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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 Sylvie,
I heard your story on Teal Tea a couple of weeks ago and have been thinking about you. This is my first time posting to OVdialogue, so I hope I’m doing it correctly and that my response will show up.

I’m sorry I can’t say that I’ve had any of the symptoms you’re dealing with, but I just started chemotherapy treatments for my 2nd recurrence and recognize how difficult it all can be. I was taking Zejula, a naraparib since July 2022 without too many side effects and thought I was doing well. My CT scan said something different! So disappointing.

Palliative care doesn’t sound good, but your GP may explain that it means, not a cure, but control of the symptoms.

Keep updating. It’s always good to find someone who’s going through the same things, isn’t it? Maybe someone will connect here soon.

Hi @GGail ... I was just reading back through some older posts and wanted to check in and see how you are doing. When you posted in May you mentioned you had just started chemotherapy for your 2nd recurrence. How are things going? I hope you are progressing well through the treatments. If you have a moment please let us know how you are doing. 

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Alwayslearning Thank you for reaching out. Yes, I started off with Paclitaxol and Carboplatin at the beginning of May. Before the end of the month, I responded to a post and mentioned that I’d been switched to Abraxane, after a reaction at the second treatment to Paclitaxol. Since then, I’ve either been in recovery mode after a treatment or trying to make the best of feeling ‘normal’ with my family so I haven’t been able to keep up to the dialogue very well.

At my July 4th treatment, I had a very mild reaction to Carboplatin — my palms got itchy just before the end of the infusion. For my last treatment on the 25th, Carboplatin was replaced with Cisplatin. I was not prepared for how quickly and hard the after effects hit and how long they’ve lingered. When your message arrived last week, I wouldn’t have been able to sit at the computer, let alone compose a sentence.

Usually, I’d be scheduled for the next (and last) treatment for next Friday (15th), but, thankfully, it’s been delayed so I can go to our annual family vacation. I am so looking forward to an extra week of feeling halfways normal.

Hi @GGail thank you for letting us know how you are doing. I'm sorry you've had challenges with Pac and Carbo. I had heard that Cisplatin is tough on your body (I was initially supposed to have that by my body rejected my IP ports twice so they switched me to Carbo). I'm glad that it sounds like you are getting a bit of strength back and feeling a bit better. I understand how tough it can be post chemo so give yourself lots of grace as you recover. 

Please enjoy your family vacation as best as you can. I know you won't feel 100% however I hope it will bring you some laughter and levity knowing what you are currently going through.

Please when you are able, keep us posted on your journey. Sending you continued healing thoughts. 

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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 

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 🥰

Some good news.  A little bit of what you wanted.  Glad to hear about it.

@Sylviequebecbc I was going to suggest legs could be lymphedema but looks like you already found that out.  Sorry to hear your symptoms re worsening.  Hoping those symptoms will improve soon.

@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. 

@Strongwoman   I did ask my oncologist about my prognosis, and she said "hard to say for you" , maybe because I am on this study, I don't know. I haven't had a bowel episode since last November, so I am happy with that. Not so happy that my lungs are involved, but I am taking it a day at time. Some days are better than others, and my capacity for bad news in general is diminished,  so I know I have to be kind to myself.  

I have a pretty good relationship with my oncology team. If I need anything,  I can call and leave a message, I get called back the same day (so far).  They have been really nice too! 

Wishing you peace and strength,  which you have already! Continue to beat the odds, I will too! 

@Strongwoman thank you for sharing your insight. Glad you have a great team behind you.

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

@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. 💕

@GloHo thank you for your raw honesty on your feelings. I TOTALLY understand even though I'm not in the same situation or place in this journey as you, I'm still battling the disease and it can be so frustrating when people look at you and think you look just fine. Meanwhile you are screaming inside your own head that you aren't. If they were able to declare 'remission' perhaps that would provide comfort however I've been told these words don't exist for OVCancer. I do have family members in denial at times. They just can't walk in our shoes.

We are here for you. I'm glad we are able to provide a safe forum for us to share our emotions. Sending you hugs.

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   

   

@LeslieA

Thank you so much for your support and understanding. I feel so much support on this site. 🥰

Hi @Strongwoman your voice has been missed on this site! Sorry to hear about the growth progression. I do hope that radiation is an option. As you say, there's no harm in asking and we after all our only true advocates for ourselves. 

It does sadden me that you have been feeling so poorly as I know you are so strong. I'm glad however that you have the support of your palliative doctor. It sounds like you established a great relationship there which is a good reminder for us all if we get to a similar position (I chose my words carefully there as I don't like the word 'when' - I always want to put as positive a spin on things as I can).

I also cannot believe you broke your hand and have that to deal with. Are you able to get in any support (PSW?) if needed? I know you have and continue to fight valiantly, even if some days you are exhausted. The fighting spirit is deep within you however I recognize the toll it does take. 

I wish there was more that we could do other than to be here to listen, and send positive thoughts your way. 

@Strongwoman I appreciate you being here.  Funny you mention your husband organizing and stuff.  This was my husband at the beginning of this journey, he wanted to declutter and organized the closets, cabinets, painting walls, small Reno's to make things nice for me.  I kept telling friends I think this is his way of "helping me" because he was feeling helpless.

Hello Strongwoman,

  I have been thinking about you every day since you posted your update. I appreciate so much the unvarnished truth of what you are experiencing. This journey is so tough. The grief that I feel for you, others, and myself is massive at times. I send you loving, caring thoughts. 

Thank you @LeslieA for your kind words.  Anticipatory grief is exactly what I have been experiencing.  It comes and goes. Like yesterday was not a good day and I said out loud "Please God, not yet.  I am not ready and it isn't time."  Bargaining with my life is what I am doing. I hope my prayers get answered. Today so far is looking like it may be a good day and that my tummy has settled down.  Who knows what brought it on this time. It is anyone's guess.  I have to roll with the punches of what life throws my way on any given day and hope for the best. \

I have my Dad's Legacy gift to wrap today and that will be the final gift to do and I am done other than journaling. I have been plugging away with that as well too. It does help to fill part of my day and also helps me mentally instead of keeping it all inside. Yesterday I wrote in my parent's journals. Today I think I may do my niece and nephew's journals.

How have you been doing/managing?  I have been reading a lot lately too which helps to pass the time. Almost done the last book in the trilogy I am reading for the first time.  Thoroughly enjoying this author's writing as well and the genre which is historical fiction. So good all around. Better than watching TV all day. 

You are correct, this journey is tough for each and every one of us. Best advice I can give is take it one day at a time and try to roll with the punches the best you can. I get my splint off in 2 wks time and can hardly wait! Seems like between it and the cast that it has been long. But soon that wait will be over!  

Today is supposed to be a warm day so going to walk to grocery store before lunch and before the heat really settles in.  Do you have any plans for today?

Hello Strongwoman, 

   I am sending you a warm virtual hug. Reading stories and journaling can be nourishing food for the soul. I have read many books since this illness and really enjoyed the escape into another world. I journal a bit and began a journaling program (52 weeks of prompts from the Daily Om) about memories and reflections on my life. It offers a structure to think about my childhood, loves, friendships and life lessons. 
   Today I am going to a healing place for 3 weeks, my cabin on Hornby Island. It will be an immersive experience of sand beaches, clear ocean water, song birds, eagles, and foraging deer. I hope to ride my bike, walk a lot, eat delicious food, and do some art. There are lots of cultural happenings on this island as well They have a music festival every August, bringing in international artists. 
  I am in a good place health wise so I am taking advantage of this, knowing that this state may change over time. I am trying to have the best summer "ever" and if I get more of them in the future, I will be grateful. Life is transitory as we know so well. 

   I was interested in what you said about Legacy gifts for your family. If you are able, could you explain that? I am interested in setting up a gifting plan for some family and friends (before I near my expiry date) and was wondering how to do that. It seems more meaningful to do this directly rather than after I have passed. 

Leslie xox

@Strongwoman I, too, missed you and wonder what happened. You were the moderator when I came on this Blog 2 years ago. And I felt more calm being in this group learning that I am not alone and that the questions and fears that I had and have, have been experienced by teal sisters before me and next to me. It is a bit heartbreaking to see you down. This is probably how it is, the tumor sucks the life out of you. I felt particularly sorry when you said that you are still making dinner for your family. Do you think you can get your family to make the food for you, maybe tendering to your wishes and ability to what you can tolerate. Maybe after all this fight, you have deserved to take a more egoistic approach and voice what you need and what you want. I know, it is easier said than done, and I am actually not sure whether I, too, would still do everything for my family rather than just sit in the corner, even on the last day of my life.

You said , you have a low grade serous ovarian cancer. You may have already seen these or discussed these options with your oncologist, but just in case

https://www.oncologynewscentral.com/drug/fda-approves-first-ever-drug-combo-for-low-grade-serous-ovarian-cancer

Thank you Tanja for sharing this. I was on Trametinib 21/2 years ago if I remember correctly,  and in my case, it didn't help. There was a 50/50 chance of working.

@Strongwoman, my thoughts are with you. 

I am still on the POG study, the Afatinib i was one seamed to help a bit, but my main issues now are ascites and pleural effusion, and my hemoglobin dropped again, I am at the hospital now getting a blood transfusion, I should feel more like myself after. My last CT showed an important pleural effusion (drained 1.5 L last week), but the lesions in my abdomen were "stable", no new lesions. So I guess that is a positive! I am going to start on the 2nd meds that came through in my profile in the study, an immunotherapy. My oncologist is in the process of finding funding. I should start in the next 2 weeks (I hope). 

My appetite has been low, can't eat much each meal. I have definitely been losing muscle mass, hope that was because of the low hemoglobin.  

I would love to hear from you ❤️

@Sylviequebecb it is always good to share experience with available or new drugs, particularly if your tumor falls off the beaten track. So, thank you for sharing. Too bad it did not work, but great that you get to try immunotherapy. Cross my fingers for you.
@Alwayslearning and @GloHo Happy belated birthday!

@Sylviequebecbc   Yes you were on Trametinib about 2 yrs ago cuz that is when I was on it too and had my severe reaction to it. Definitely can't take that drug or any derivitive of it again. Oncologist said it was the worst case he has seen yet from someone taking it.  

Good to hear that you still have options on the table and are exploring them.  I would be too if they were an options for me.  

My latest CT scan showed 2 new growths of relatively large size and also growth on the one by my spleen. So, I had bloodwork done last week and kidney function is still good and the rest of the bloodwork too. I called in for my CA 125 levels and in 6 months time it has increased by 1000 points. So from 994 to 1995. To be expected with what was found on the CT scan. I go back for more blood work in 3 months time.  I asked for a prognosis and the Oncologist said 6 months this time. We will see how I am and how my symptoms progress. I am hoping they stay status quo and that the prognosis is incorrect and I beat the odds of it again. Still have living to do with hubby, boys and family/friends.  Not ready to leave this earth yet.

Like you, I am finding eating more and more difficult. I eat more often, less each time and spread out throughout the day. Finding the Starbuck's refreshers are good to sip on during the afternoon while I read. Satisfies my thirst and also fills me up some. I found out I can eat Crispie minis. They are 1 mg of fibre for every 8 eaten. What a treat from having soda crackers. Rice Krispie squares have 0mg of fibre too. I have been finding this stuff at the dollar store which is good. I get up during the night and am snacking for some reason. I try not too but my body is hungry so I feed it. I try not to get down during the day and dwell on the fact that there is no cure or treatment left for me. I am slowly ticking things off my bucket list and making sure financial stuff is up to date so hubby doesn't have to deal with it when it comes time.  I do my best to go out on little outings with him on the weekend. He seems to enjoy this and finds that it is spending time together.  What he is trying to do is get me out of the house.  I could care less if we left it or not. I would rather stay home and read most of the time, nodding off now and then in the afternoon as I read.  

Good news for me is that there is no pleural effusions so I am thankful for that. I also haven't had to increase my meds or pain meds. Those are positive signs to me that the symptoms still remain manageable.  I have been open and honest with the family about the results of CT scan and bloodwork and they seem to be taking it ok.  Everyone walks on eggshells and worries when I don't feel well as they keep wondering if the episode I am in, will be the one that takes me to  Hospice and I end up in Palliative sedation unable to speak to them. I cross my fingers that we aren't there yet but one does worry when one does not feel well.  Keeping in touch with my Palliative doctor helps a lot and she is really good at getting back to me and the crisis at the time. She has been great and I am so thankful to have her on my team.  When my symptoms are great so is my urinary incontinence.  It seems to increase for some reason. Maybe all that pressure inside that builds up?  I manage the best I can and have resigned myself to the fact that normal underwear is not in my wardrobe anymore. I would rather that then leaking and having people stare at me.  If they only knew the battle that rages on inside out of my control. But they don't so remain ignorant. Same with the "you look great" comments.  Little do they know I fake most of it and just nod and agree when they say something like that. 

Eating is becoming harder and harder. I eat more often and less at each sitting.  The tummy seems to like that better and it passes better too.  I try to eat what I like and chew is slowly and well to help it pass through the digestive system. Best I can do to help with eating. I keep looking for foods to try that are low fibre to increase what I can eat while maintaining the same ol same ol that the family gets bored of.

I had to have a chat with the oldest son last week about myself because I keep telling him I have dinner covered when I really don't care what they eat at the time. So I am learning to say I can't cook today, can you before you go to work? And then letting him cook for everyone instead.  It is working out better this way. I have been to the market as well and bought them fresh veggies and fruit so that they have variety in their diet. Just because I can't eat it doesn't mean they should be denied having it.  It is working so far and hope it continues like that too.  I know there will come a time that I can't do any of it and they will have to figure it out on their own and they will. In the meantime, I have to ask for help when I need it and go from there. 

Not sure if any of my info is helping you but thought I would drop you a line today to check in.  I read the posts as they come in but don't feel compelled to answer back right away. It is not that I am not interested in what everyone is saying, it is finding the energy to respond to the posts and being empathetic at the same time.  It is a delicate balance and one does have to be in the right frame of mind to respond.  

Well my Teal Sisters, It is time for me to go find something to eat for breakie, make my bed and put in a load of laundry. I tend to wear the same thing over again as I really don't go anywhere. Saves on doing a ton of laundry too. It was great hearing from you, @Sylviequebecbc   Since our diagnosis is quite similar it is always great to get caught up with you. So thankful that your team has found some options for you and that you are trying them. I hope they work for you and give you more quality of life for a long while.  Please keep in touch and we will chat later. 

@Strongwoman this is for you…

Awww thanks! 

Take care and have an awesome day!

@Strongwoman@Sylviequebecbc. Stay strong ladies.  Just wanting to send hugs to you both.😘