English Community

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello Sylvie,

  I have been thinking about you a lot since I read your post the other day. I am so sorry that you have these symptoms; it must be a huge worry for you. I don't have these symptoms but I imagine there are others here who can relate. I send you a very warm hug and hope that you get some clarity from your doctor and get the support you need. 

Leslie 

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Thank you ladies! 

Your support is dearly appreciated ❤️

I had a zoom meeting with my oncologist yesterday,  and I came out of it with a more positive attitude in a sense. My left lung is a bit fuller than 2 weeks ago, but not much different,  so no pleural drainage as of yet, we will monitor.  My right leg is still swelling up, still don't know why. It looks like a lymphatic drainage problem, so I will try a full leg compression stocking,  and she is sending me for tests (date to be determined). 

I will stay of the POG study drug for now, looks like it is "doing something " since my CA 125 has dropped from the 1700 to the 1500 in 1 month. I am tolerating the lower dose. 

I have apply for the palliative program, to have access to more support. I am on a live longer and better journey now, not a cure journey.  I am coming to term with this slowly,  although I am still fighting the battle, a glimmer of hope still exists.  

The sun is shining, big hugs to you all 🥰

Hello Sylvie,

  I have been thinking about you a lot since I read your post the other day. I am so sorry that you have these symptoms; it must be a huge worry for you. I don't have these symptoms but I imagine there are others here who can relate. I send you a very warm hug and hope that you get some clarity from your doctor and get the support you need. 

Leslie 

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Thank you ladies! 

Your support is dearly appreciated ❤️

I had a zoom meeting with my oncologist yesterday,  and I came out of it with a more positive attitude in a sense. My left lung is a bit fuller than 2 weeks ago, but not much different,  so no pleural drainage as of yet, we will monitor.  My right leg is still swelling up, still don't know why. It looks like a lymphatic drainage problem, so I will try a full leg compression stocking,  and she is sending me for tests (date to be determined). 

I will stay of the POG study drug for now, looks like it is "doing something " since my CA 125 has dropped from the 1700 to the 1500 in 1 month. I am tolerating the lower dose. 

I have apply for the palliative program, to have access to more support. I am on a live longer and better journey now, not a cure journey.  I am coming to term with this slowly,  although I am still fighting the battle, a glimmer of hope still exists.  

The sun is shining, big hugs to you all 🥰

Hello Sylvie,

  I have been thinking about you a lot since I read your post the other day. I am so sorry that you have these symptoms; it must be a huge worry for you. I don't have these symptoms but I imagine there are others here who can relate. I send you a very warm hug and hope that you get some clarity from your doctor and get the support you need. 

Leslie 

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

@Sylviequebecbc   Thank you for your post. Your original one in which you were attempting a trial sounded very promising and I was looking forward to following you. As you know, our diagnosis are similar and have had similar journeys.  I do not possess the marker you do in order to go into that trial you are on currently which is disappointing for me but I am happy for you.  

As for your new symptoms that have cropped up, I would talk to your team about them. Either call in and ask or book/wait for your next appt and ask the questions you need answers to.  I am not having similar symptoms. Mine are mainly continually dealing with partial bowel blockages and eating. As for if your prognosis is poor, only your Oncologist can answer that. I take things day by day and how I am feeling.  My prognosis is poor and was given 3 months to live late last year. So every day I am here and can do things on my own is a blessing for me. I try not to dwell on what they say and go by how I feel.  I have given over to projects I can't do on my own anymore like gardening and accepted it and have found inside activities to do instead like knitting.  I still clean the house but try to split it up so its not so taxing on me either. I don't nap during the day and watch my eating daily. I keep in contact with my Palliative Doctor when I am not feeling well and when I do feel well. We have a pretty good relationship that way. She is quick to respond when I need her to. I take an extra Dex (steroid) half way through the day on bad days and take Halidol those days too orally. Rest and relaxation help on those days too. I basically listen to my body and try to navigate through the symptoms that way.  So in answer to your question, communication goes a long way.  I would get in touch with someone and ask what you want to ask.  If you want to know your prognosis, ask. I did. I didn't like the answer but have come to accept it as is now. Perhaps sparking a good relationship with a Palliative Doctor will help you too. It may give you more piece of mind and/or options that will help with your current symptoms. I wish you well in whatever decisions you make and will look forward to your updated posts. 

Take care of you. 

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

@Sylviequebecbc   Thank you for your post. Your original one in which you were attempting a trial sounded very promising and I was looking forward to following you. As you know, our diagnosis are similar and have had similar journeys.  I do not possess the marker you do in order to go into that trial you are on currently which is disappointing for me but I am happy for you.  

As for your new symptoms that have cropped up, I would talk to your team about them. Either call in and ask or book/wait for your next appt and ask the questions you need answers to.  I am not having similar symptoms. Mine are mainly continually dealing with partial bowel blockages and eating. As for if your prognosis is poor, only your Oncologist can answer that. I take things day by day and how I am feeling.  My prognosis is poor and was given 3 months to live late last year. So every day I am here and can do things on my own is a blessing for me. I try not to dwell on what they say and go by how I feel.  I have given over to projects I can't do on my own anymore like gardening and accepted it and have found inside activities to do instead like knitting.  I still clean the house but try to split it up so its not so taxing on me either. I don't nap during the day and watch my eating daily. I keep in contact with my Palliative Doctor when I am not feeling well and when I do feel well. We have a pretty good relationship that way. She is quick to respond when I need her to. I take an extra Dex (steroid) half way through the day on bad days and take Halidol those days too orally. Rest and relaxation help on those days too. I basically listen to my body and try to navigate through the symptoms that way.  So in answer to your question, communication goes a long way.  I would get in touch with someone and ask what you want to ask.  If you want to know your prognosis, ask. I did. I didn't like the answer but have come to accept it as is now. Perhaps sparking a good relationship with a Palliative Doctor will help you too. It may give you more piece of mind and/or options that will help with your current symptoms. I wish you well in whatever decisions you make and will look forward to your updated posts. 

Take care of you. 

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

@Strongwoman

Hi!! Thank you for taking the time to share your update with us. I miss your words of wisdom and insights into the physical and mental aspects we deal with constantly. I think of you daily 🥰.

As I move along my journey path, I find myself wanting to cocoon…to detach from everything. Lately, I have been thinking about how lonely this journey is. Even with the love and support of family and friends. It is something that only we deal with on a daily basis. I don't mean that my family and friends are not concerned, worried, or sad, just that we are the ones that have to feel our bodies changing, think of what's next (or not), and make decisions that we feel are best for us. I am able to share a lot of things with a lot of different people but I keep it to what I think their tolerance level is. Not one person knows exactly what all of my daily struggles or thoughts are.

Since I have had good quality of life over the last six years, I think people forget that I am dying. Geez…sometimes I do too. Not a bad thing. But…sometimes this makes me angry and I start a little pity party with myself. However, I have never wanted to dwell on it…I have wanted to maintain the norm as much as possible. Perhaps they just understand that…I hope they appreciate it because if anyone could bitch and complain about where they have landed in life…I could! 🤣 

My husband would rather not talk about the nitty gritty things (funeral planning, etc.). My oldest son gets it and is probably the most open about it. My youngest son will not take my update calls without his girlfriend present because he can't retain what I'm telling him. He does ask questions which is good. Although I do not burden them with my daily struggles, I told them from the outset that they would get the truth from me. So, when there is a shift in my health or treatment plan, they hear from me.

These thoughts are not with me all the time but sometimes they get stuck in my brain longer than I'd like. I am a positive person 99% of the time and remain hopeful that options remain open for me. It keeps me uplifted and moving forward.

OK…I feel better now. Thanks for listening everyone. 💕

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

@Strongwoman

Hi!! Thank you for taking the time to share your update with us. I miss your words of wisdom and insights into the physical and mental aspects we deal with constantly. I think of you daily 🥰.

As I move along my journey path, I find myself wanting to cocoon…to detach from everything. Lately, I have been thinking about how lonely this journey is. Even with the love and support of family and friends. It is something that only we deal with on a daily basis. I don't mean that my family and friends are not concerned, worried, or sad, just that we are the ones that have to feel our bodies changing, think of what's next (or not), and make decisions that we feel are best for us. I am able to share a lot of things with a lot of different people but I keep it to what I think their tolerance level is. Not one person knows exactly what all of my daily struggles or thoughts are.

Since I have had good quality of life over the last six years, I think people forget that I am dying. Geez…sometimes I do too. Not a bad thing. But…sometimes this makes me angry and I start a little pity party with myself. However, I have never wanted to dwell on it…I have wanted to maintain the norm as much as possible. Perhaps they just understand that…I hope they appreciate it because if anyone could bitch and complain about where they have landed in life…I could! 🤣 

My husband would rather not talk about the nitty gritty things (funeral planning, etc.). My oldest son gets it and is probably the most open about it. My youngest son will not take my update calls without his girlfriend present because he can't retain what I'm telling him. He does ask questions which is good. Although I do not burden them with my daily struggles, I told them from the outset that they would get the truth from me. So, when there is a shift in my health or treatment plan, they hear from me.

These thoughts are not with me all the time but sometimes they get stuck in my brain longer than I'd like. I am a positive person 99% of the time and remain hopeful that options remain open for me. It keeps me uplifted and moving forward.

OK…I feel better now. Thanks for listening everyone. 💕

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Glo Ho,

   I really appreciate your frank update about how things are for you. We are all at different stages of this illness, and it can be a reflective process that is  so deeply personal. For me it feels like climbing an insurmountable mountain at times, followed by coasting to the land of feeling okay, possibly even good. I am glad that you have enjoyed a relatively long period of some quality of life. I also hope that things get better health wise and hope regenerates. 

Warmly,
Leslie   

@Strongwoman

Hi!! Thank you for taking the time to share your update with us. I miss your words of wisdom and insights into the physical and mental aspects we deal with constantly. I think of you daily 🥰.

As I move along my journey path, I find myself wanting to cocoon…to detach from everything. Lately, I have been thinking about how lonely this journey is. Even with the love and support of family and friends. It is something that only we deal with on a daily basis. I don't mean that my family and friends are not concerned, worried, or sad, just that we are the ones that have to feel our bodies changing, think of what's next (or not), and make decisions that we feel are best for us. I am able to share a lot of things with a lot of different people but I keep it to what I think their tolerance level is. Not one person knows exactly what all of my daily struggles or thoughts are.

Since I have had good quality of life over the last six years, I think people forget that I am dying. Geez…sometimes I do too. Not a bad thing. But…sometimes this makes me angry and I start a little pity party with myself. However, I have never wanted to dwell on it…I have wanted to maintain the norm as much as possible. Perhaps they just understand that…I hope they appreciate it because if anyone could bitch and complain about where they have landed in life…I could! 🤣 

My husband would rather not talk about the nitty gritty things (funeral planning, etc.). My oldest son gets it and is probably the most open about it. My youngest son will not take my update calls without his girlfriend present because he can't retain what I'm telling him. He does ask questions which is good. Although I do not burden them with my daily struggles, I told them from the outset that they would get the truth from me. So, when there is a shift in my health or treatment plan, they hear from me.

These thoughts are not with me all the time but sometimes they get stuck in my brain longer than I'd like. I am a positive person 99% of the time and remain hopeful that options remain open for me. It keeps me uplifted and moving forward.

OK…I feel better now. Thanks for listening everyone. 💕

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...

Hello 

  Ya I have been MIA.  I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do.  Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too.  It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV.  I got my cast off last week and now have a splint on for 4 wks.  Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.

Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask. 

Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better.  He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more.  Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time.  I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day.  I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done. 

I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them. 

This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask.  I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will  I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!

Chat soon 

Strongwoman

Hi everyone, 

I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism,  so I am on an anti-coagulant, and my left leg swells up everyday,  they checked for a blood clot but didn't find any. 

Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...