Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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All this talk about different drugs and combos that are working for everyone is very interesting and encouraging!It’s funny because every time I talk to my Onc about next steps, she seems surprised that I want and will try different drugs and combos (if available to me)…even if the side effects sound daunting.I’m never sure how to take it.Has she never had a patient push back or self advocate? Does she not realize that everyone reacts/tolerates these drugs differently? Or is she really telling me that I will 100% experience the side effects (from her experience)?As long as there is a drug available that I have not tried and that may work for “me,” then I am going to try it!!Of course, if side effects do become debilitating and drastically affect QOL, I would stop the drug. And, move onto the next one…🤣
I am still not certain that she is in my corner 100%. Weird cause she has done nothing but work with me, listen to me ad nauseam about current research on drug combos and discuss standard of care and clinical trials with me. I think what I’m really not sure about is if she would go to bat for me to fight for a drug that is outside standard of care. Guess we’ll cross that bridge when we come to it.I know it sounds like a terrible situation, but it really is not. Like I said, she really hasn’t let me down yet and I have no basis for what I am feeling…it’s just a gut instinct and we know we should heed those feelings. So, it will remain at the back of my mind until we reach that point.If I get into this clinical trial I think I may ask for a referral to an Onc at PMH for a second opinion on what’s next and how far they would go to support a patient with my history and current wellbeing. Something to think about for sure!!
If nothing else, I am optimistic!! 🤣2 -
I am really appreciating all this information. Right now I have what I think might be the flu. Low, sometimes no fever, nausea, but mainly migraine type constant headaches,no appetite, constipation, and a general feeling of unwellness. But perhaps the worst id the rabbit holes I go down. Its not flu, its something much worse, and I am going to die. My husband says I have the worst imagination, and he’s right. I do know that others on Gabriola have had a bad flu though. And I am supposed to be in remission. It ain’t fair!
@Strongwoman I also take long acting and short acting dilaudid, because my onc was amazed I wasn’t on it. It made such a difference. But I am on such a lot of meds I am surprised my liver has not collapsed.
luckily, my bladder problem is in abeyance, just the occasional spasm.I have lots to say about the change that cancer produces in our personalities. Or mine, at least. For later.1 -
@Hooodith
Given your many artistic and creative talents, I’m not surprised to hear you have a vivid imagination!Sounds like the flu is going around the island. I’m sure you are giving your body what it needs to overcome the flu. Hang in there, it’s just taking your body a little longer to recoup.Those rabbit holes…are you having difficulty getting out of those? Are they just an extension of how you are feeling because of the flu or do you find your mind wandering there a little too often? Maybe because you are exhausted from that general feeling of unwellness that seems to be dragging on for you? Have you spoken to your Oncologist about it? Perhaps some anti-depressants as needed for those times? Just something to give you a boost.Oddly, the time between last chemo and moving on in remission has its own challenges. Maybe that is part of what you are also dealing with?
Just seems you are experiencing all these negatives at the same time!! It does seem unfair that this would all hit you as you enter remission. So, get yourself well - mentally and physically. Start planning all the fun things you want to do now that you are treatment and disease free. That may help take your mind off some of what you’re feeling. Sending positive vibes your way.0 -
@BellaDonna1959 It is nice to see you post that you are feeling much better than you were. Happy to see that the Pregabalin has reduced that tingling in the extremities by that much of a percentage. It is very significant indeed! I would be happy with that too if I were experiencing it. It is like you have been given a gift to be able to do more than you were able to do previously as it sounded like it was very debilitating for you. Such wonderful news.BellaDonna1959 said:I have found that Claritin has really helped with my leg heaviness and aching - I take one per day (non drowsy). Also Pregabalin at the 200 mg 2 x a day dose has reduced my finger and toe tingling and numbness about 90%. Feeling so much better without the constant pain.
Thank you for sharing and contributing in your posts.
Take care of you
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@Lorraine5845 My girlfriend from my group has just gone through the same thing with the Gastrofil. It was very debilitating for her. I went and sat with her one afternoon when she was experiencing symptoms. It was through our chat that she figured out that it was the Gastrofil causing the symptoms she was feeling. I kept asking her to describe what she was feeling to me as she was experiencing it and it was through that conversation that we figured it out together. She felt such a relief to know it was that as she thought there was much more going on. No one told her about the Claritin either which is interesting in and of itself. Now I will know if she has to have it again what to suggest thanks to both yourself and @BellaDonna1959Lorraine5845 said:@BellaDonna1959 4 years ago during my first set of chemo my neutrophils were low which obliged me to inject myself with gastrofil. That medication was giving me aches in my bones mostly leg and my family dr told me to take Claritin.
Thank you ladies for sharing 1 -
@GloHo I have read and re-read your post from this morning. I have taken a step back to view it in a different lens. I am not so sure that your Onc is surprised in a way that is not supportive but perhaps one of disbelief that she has a patient that is actually wanting and willing to try anything and everything despite the side effects. Not every patient would do that and I would say that I am in with that cohort. One has to convince why I want or need to take it and what type of quality of life I will have with doing so.GloHo said:All this talk about different drugs and combos that are working for everyone is very interesting and encouraging!It’s funny because every time I talk to my Onc about next steps, she seems surprised that I want and will try different drugs and combos (if available to me)…even if the side effects sound daunting.I’m never sure how to take it.Has she never had a patient push back or self advocate? Does she not realize that everyone reacts/tolerates these drugs differently? Or is she really telling me that I will 100% experience the side effects (from her experience)?As long as there is a drug available that I have not tried and that may work for “me,” then I am going to try it!!Of course, if side effects do become debilitating and drastically affect QOL, I would stop the drug. And, move onto the next one…🤣
I am still not certain that she is in my corner 100%. Weird cause she has done nothing but work with me, listen to me ad nauseam about current research on drug combos and discuss standard of care and clinical trials with me. I think what I’m really not sure about is if she would go to bat for me to fight for a drug that is outside standard of care. Guess we’ll cross that bridge when we come to it.I know it sounds like a terrible situation, but it really is not. Like I said, she really hasn’t let me down yet and I have no basis for what I am feeling…it’s just a gut instinct and we know we should heed those feelings. So, it will remain at the back of my mind until we reach that point.If I get into this clinical trial I think I may ask for a referral to an Onc at PMH for a second opinion on what’s next and how far they would go to support a patient with my history and current wellbeing. Something to think about for sure!!
If nothing else, I am optimistic!! 🤣
In saying that, I would like to think that she is actually supportive and amazed that she has a patient that is so forthright and open minded to try anything at her disposal in order to help their own case. It is not a common thing they see daily is my take on it. By all means, if you feel the Onc is not supporting you and you want a second opinion, ask for it. Get referred to PMH and see what they have to say and what they may recommend for you.
You are so forward thinking and ahead of game when it comes to your journey and treatment/trials that it is utterly amazing. The research you do and the feedback you provide to the group is invaluable. Your outlook goes right along with it.
Whatever you decide to do, is your decision and yours alone. I thought I would provide a different side so to speak to think about. I hope it helps but if your gut is right, and you feel strongly about the 2nd opinion, ask for it, like I know you can and will. You are amazing. 0 -
@Hooodith When we feel unwell it is difficult to not go down rabbit holes (or has been in my experience). We get feeling low and our minds wander and we are so conditioned to be on alert for our own signs and symptoms to report back that it is hard to not do otherwise. Even when we are declared NED, it is difficult to believe at times that it is actually true. We wonder when "the other shoe will drop" and "how long it will last". We can, at times, forget to live in the moment and "enjoy". It is normal, all of it. This disease and living with it, does that to us and our mindset. We have all had to self advocate for so long it is hard to decondition some of that wiring. It may very well be that the flu is going around and you may have it. Your symptoms may hit a bit different due to the previous chemo treatments you have had and your body still recovering from them. As you know I say to many, "BE KIND TO YOURSELF".Hooodith said:I am really appreciating all this information. Right now I have what I think might be the flu. Low, sometimes no fever, nausea, but mainly migraine type constant headaches,no appetite, constipation, and a general feeling of unwellness. But perhaps the worst id the rabbit holes I go down. Its not flu, its something much worse, and I am going to die. My husband says I have the worst imagination, and he’s right. I do know that others on Gabriola have had a bad flu though. And I am supposed to be in remission. It ain’t fair!
@Strongwoman I also take long acting and short acting dilaudid, because my onc was amazed I wasn’t on it. It made such a difference. But I am on such a lot of meds I am surprised my liver has not collapsed.
luckily, my bladder problem is in abeyance, just the occasional spasm.I have lots to say about the change that cancer produces in our personalities. Or mine, at least. For later.
I don't want to get into the "ifs" here and want to remain as positive as I can for you. Let what I say sink in and see what the next few days bring. Rest, recover and hydrate. Eat smaller meals that are easily digestible which will help with the constipation.
Glad to hear the bladder has decided to agree with you and not add to your current symptoms. I hear you on the meds and what it does to our insides. I have surrendered to that and go with what makes me comfortable. It is the least of my worries is how I look at it.
As for the change cancer has on our own selves and personalities, ya, I think we could all write novels about it! LOL0 -
@Hooodith What do you have in mind for the future? Any plans or trips or anything? Spring sounds like it is well underway in BC which is so nice. Today we have warning out for snow and blowing snow this afternoon. My mini irises and crocuses are up and are now covered in a layer of snow. I know they will be okay but they were nice to see. Same with opening windows when we had temps of 17 degrees. It is refreshing to soul, body and mind. Have you been writing or writing any more poems? Plans with the girlfriends for something? I am always interested in what everyone is up to when they feel well. One never knows if it will inspire or invoke an idea or excursion for myself sometime. Whatever you end up doing, I am sure it will interesting.GloHo said:@Hooodith
Given your many artistic and creative talents, I’m not surprised to hear you have a vivid imagination!Sounds like the flu is going around the island. I’m sure you are giving your body what it needs to overcome the flu. Hang in there, it’s just taking your body a little longer to recoup.Those rabbit holes…are you having difficulty getting out of those? Are they just an extension of how you are feeling because of the flu or do you find your mind wandering there a little too often? Maybe because you are exhausted from that general feeling of unwellness that seems to be dragging on for you? Have you spoken to your Oncologist about it? Perhaps some anti-depressants as needed for those times? Just something to give you a boost.Oddly, the time between last chemo and moving on in remission has its own challenges. Maybe that is part of what you are also dealing with?
Just seems you are experiencing all these negatives at the same time!! It does seem unfair that this would all hit you as you enter remission. So, get yourself well - mentally and physically. Start planning all the fun things you want to do now that you are treatment and disease free. That may help take your mind off some of what you’re feeling. Sending positive vibes your way.
In the meantime, rest yourself and will chat soon. 0 -
@Strongwoman
Thanks for the new perspective! It is very possible that’s it!As is true for most of us, this health stuff is all new to me…add to that my personality…and you have a very unsure but determined patient. I also find it difficult to accept the status quo when there seem to be so many options that may be available. My Onc has actually offered referral to PMH for me a couple of times…probably during my self-advocating times where I tend to ask a LOT of questions about why this and not that 🤣🤣. I’m sure I leave her feeling like I don’t trust her…when in reality I do. She always consults with others before my appts to see if appropriate next steps are being offered or to find out if there are any trials available. I just want to be certain that it is the right thing for me.Given where I’m at in my journey, I will probably ask for a referral. Can’t hurt to get another perspective.Thanks for your support putting some thought to this.0 -
@GloHo I can really relate to your instinct and concerns about your oncologist. When I talk to mine (and I am always full of research and questions too) he seems much more about 'quality of life' whereas I am all about 'quantity of life'. I would endure a lot to have more time with my family (more months of life) and I'm nowhere near giving up treatment. When I was suffering a lot he suggested taking a break from chemo and resuming WHEN (!!!!!) the tumors start to grow and spread. I was horrified and told him there is no way I'm doing anything to let the tumors do that! He seems so laid back about it all not seeming to understand I'm fighting for my LIFE. He did mention another drug we could try and then trials through PMH if my cocktail stops working when I asked. He often tells me nobody has been on my cocktail as long as me in all his years (I haven't asked if they all died, got better or had to try another combo). He did say we will keep doing what we are doing until it stops working (not if, but when is implied). He is a more negative person than I am. On the other hand, he does listen to me and he did fight for OHIP to cover my Avastin even though I was slightly outside the approved parameters. My friend at Juravinski has a much more positive oncologist (with a we will do anything and everything attitude) and I wish I had her oncologist but I can't deal with the drive to Hamilton. Her oncologist reminded me when I went for a 2nd opinion on surgery, that I'm doing great on my cocktail and she told me one of her stage 3C ovarian cancer patients lasted 20 years after her diagnosis - I wish I got more of that sort of news, positive attitude and encouragement from my oncologist. Also we always have to be careful when requesting changes because we can't always get approval from OHIP to go back to what worked before. I don't really get that but I hear about it often, especially with Avastin. I also found that my oncologist wasn't aware of Avastin being pared with certain other drugs - he seemed to think certain combos are not approved in Ontario for Ovarian cancer, but I've read here that some of you have been on these other combos. It bothers me and makes me feel he's not keeping up with all the latest developments.0
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We have to be our own advocates all the time. As much as a doctor may come off as caring, empathetic or whatever we want to call it I'm starting to realize that only we can make sure we get the treatment we deserve.
The reality is for the majority of doctors they are overworked to say the least and cannot provide stellar care 24/7. I feel for the people who do not know how to speak up and ask for what they need as they " fall through the cracks"
I just had to leave a voicemail to try and trick one of my doctors into ordering my 6 month scan which will be in May. As I mentioned last time, the head of the department had the wonderful idea that I don't need the 6 month mark scan, but 2 other of my once said I did. Don't ask me why I've seen 3 oncs... It seems at my hospital they all share patients from time to time. Which, can have its benefits. 2 out of the 3 said because ca125 wasn't elevated I need scans.. so fingers crossed I managed to trick them lol1 -
Thank you ladies for your engagement today and all the conversations. Tomorrow, I am going to talk about Quality of Life Vs Quantity of Life in the Teal Thursday chat. All of this conversation indicates to me that it means different things for everyone here on this site. I will pull together some resources etc and we can have a good chat about it.
Hope you all tune in and join the conversation. 1 -
@BellaDonna1959
Sorry to hear you are not that happy with your oncologist. It is positive news that you have had such success with your cocktail!!Unfortunately, it is true that there are restrictions on drugs and specified times when they can be used and combinations that can be used in order to be funded by the government. So, your Oncologist is correct when he tells you that. This information is available in the drug monograph that I look up in the drug formulary found on the Cancer Care Ontario website. The drug formulary consists of drugs approved by the government based on research findings from clinical trials.It is also true that while you may get a certain drug regimen at a specific time in your treatment (ie, first line, second line, etc), I may receive different drugs at that same point. I’m not sure that one is better than the other, rather decisions are made based on you specifically. There is not a one size fits all formula for us. Does that make sense?I think you have to be especially careful with what you read because we do not all have the same type of ovarian cancer nor are we at the same stage of our journeys and different drugs work better for some than others, even with the same cancer. I do find some of the combos mentioned on this site interesting and will often research and ask my Onc about them. 😁
I am currently applying for my second trial. This one is at PMH and I should know by Monday whether or not I have met all criteria and can move ahead with treatment. 🤞 It’s a lot of work for a drug you’re not sure will work but if it doesn’t work for me, maybe the research they gather from my participation will help someone in the future. I just try to stay positive and, like you, will try drugs if there is potential for improvement or even stabilization of my cancer.Sending positive vibes for continued success on your current cocktail!!1 -
@Strongwoman
I will be in transit tomorrow…heading to Toronto for a whack of testing on Friday to determine my eligibility for the trial.I will catch up when we get to the hotel. I look forward to reading tomorrow’s discussions.For me, right now, I feel like both are moving targets. Something to think about for sure!!0 -
Welcome Ladies to Today's TEAL THURSDAY. Today I am putting up resources and discussions around
Quality vs Quantity of Life
This means something different for everyone and we all depict or decipher it differently. Here is what the Canadian Cancer Society has to say about it and here is the link to it (Quality of life | Canadian Cancer Society)
"Before having cancer, you may not have thought a lot about your quality of life versus your quantity of life. You were just living it. Now, as you go through treatment or recover from treatment, quality of life may become a balancing act with quantity of life. Your healthcare team may use these terms when they talk to you and your loved ones.
In the simplest of terms, quality of life is your ability to do and enjoy the things in your life that mean the most to you while feeling as well as possible. It means different things to different people. Quantity of life is the amount of time that you live.
Even if you have a good prognosis, cancer may make you think about what is important to you and what you want to do with whatever time you have left, whether it is short or long. You may also discover what isn’t important to you or realize that there are things you don’t want to have in your life.
For some people living with cancer, the amount of time they have is very important. Your reason for wanting this time may be different from someone else’s – after all, everyone’s life goals or bucket list is different. You may want to travel somewhere new or go back to a favourite place. Perhaps you want to complete a project at home or learn a new skill. Or maybe seeing your children finish school, get married or have children is the most important thing to you. To be able to have this time, you may be willing to put up with treatment side effects that are very unpleasant or that last a long time. You may be willing to have as many treatments as possible or take part in a clinical trial that could give you more time.
Or you may find that your priority is to feel well enough to do what is most important for you for as long as you can. Some people do not want to continue treatments for a long time, especially when the side effects stop them from enjoying life. You may feel that after several different treatments, you would rather have some time to enjoy your life without being in treatment.
What quality of life means to you may change over time."
This information from CCS gives us all food for thought. What does either one of these mean for you, as an individual in your unique journey? If you have not stopped to think about this before, it may be time now. Write down what your thoughts are, if it helps or talk to a health professional like your Oncologist or Psychologist about it.
I listened to this webinar on Wellspring.ca on Navigating a Cancer Diagnosis. Now you may have thoughts that pop up that say, well "I am already doing that" or "I know how to do that". This webinar brings to light a lot of issues that come up starting from the beginning of our journeys or for some mid or late. It may also make you feel that you have been "heard" or "understood". It may also give you some food for thought with some gentle guidance as to how to navigate these different keys involved with our disease. Here is the link to the video: Navigating a Cancer Diagnosis: 7 Keys for More Choice and Control - Wellspring
Based on the chats for the past couple of days, it is very evident that these words mean different things for each and every one of us. It does NOT mean we all need to be on the same page or path. It means that we support each other through our own unique journeys. That we all have ups and downs along the way which include interacting with Health Professionals. Some we may align with and others we may not. What we need to remember is that yes, we are the patient, but we are all humans. We want to inherently to connect with one another, with our physician, oncologist or palliative doctors. We want to be understood and heard and to feel that our team "is on our side". We can at times feel "lost in the system" or that our team "doesn't get me". Some clinicians/physicians can have less personal skills but be very brilliant in the area of health care they excel at. It is why we should look at our own care as a "team" approach and would urge anyone who is experiencing this disease to seek out what is known as "Hope for the best, Plan for the rest" approach to care. This is the key to finding what I feel is the "missing link" in our care teams. I have felt since having a Palliative Doctor on my team that my choices remain my choices and that I am heard from all on my team. It is what we all want. If you currently aren't experiencing it, listen to this webinar and find out how you can get that integrated into your care and care team.
There are times that we can feel that we are navigating this ourselves or steering the team in a certain direction. What is important is to know that they are listening and understand what we are saying and what are views are on what quality vs quantity mean to us, personally. This as has been suggested, may change over time and is a balancing act. What it looks like in the beginning, middle and end can vary or stay the same. It all depends on your unique journey. The balancing is the crucial part of it all because we all want more time but what that picture looks like for you and how you spend it differs for all of us and changes with time. Look at the beginning and when you found out you had cancer and where you sit now. How much of your "normal" self/life from then remains the same now? A lot has changed and those changes are not only physical but mental and emotional. Our family and friends around us have changed as well. How could it all not?
The take away I want you to leave with today and to ponder on is this: What does this mean to you? What does that journey you want to take currently look like and do you have the team in place you need? This is also a gentle reminder that Wellspring.ca has a wealth of information there and quite a few webinars for viewing at your leisure. There is one on one peer support if you feel you need it. There are also online courses should you so choose to join. Consider them the sister to our site and an extension of our Ovarian Cancer Journeys.
I hope you found this information useful and kindly join in and tell us where you are at and what you are doing along the way. This is your site for you to express in a safe environment the ups and downs of your journey with support along the way.
As always "Take care of YOU!"
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Well put @GloHoGloHo said:@BellaDonna1959
Sorry to hear you are not that happy with your oncologist. It is positive news that you have had such success with your cocktail!!Unfortunately, it is true that there are restrictions on drugs and specified times when they can be used and combinations that can be used in order to be funded by the government. So, your Oncologist is correct when he tells you that. This information is available in the drug monograph that I look up in the drug formulary found on the Cancer Care Ontario website. The drug formulary consists of drugs approved by the government based on research findings from clinical trials.It is also true that while you may get a certain drug regimen at a specific time in your treatment (ie, first line, second line, etc), I may receive different drugs at that same point. I’m not sure that one is better than the other, rather decisions are made based on you specifically. There is not a one size fits all formula for us. Does that make sense?I think you have to be especially careful with what you read because we do not all have the same type of ovarian cancer nor are we at the same stage of our journeys and different drugs work better for some than others, even with the same cancer. I do find some of the combos mentioned on this site interesting and will often research and ask my Onc about them. 😁
I am currently applying for my second trial. This one is at PMH and I should know by Monday whether or not I have met all criteria and can move ahead with treatment. 🤞 It’s a lot of work for a drug you’re not sure will work but if it doesn’t work for me, maybe the research they gather from my participation will help someone in the future. I just try to stay positive and, like you, will try drugs if there is potential for improvement or even stabilization of my cancer.Sending positive vibes for continued success on your current cocktail!!
Thank you for your input of information that you have found over time. It is invaluable to all.
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A very apt topic for today @Strongwoman. Speaking for myself I have not quite figured out where I draw the line when it comes to quality vs quantity for myself.
After working in the hospital for years I have certainly been an advocate for quality of life over quantity after watching numerous people essentially wasting away in bed all day. Seeing things like that I've told myself I do not want to live like that regardless of diagnosis.
Having said this, I will always respect a person's will to live despite a dismal prognosis. Who am I to say?
For myself having recently gone through first line I can say that I without a doubt would go through 2nd line without hesitation should cancer ever rear it's hideous head again. Another factor that I think goes into debating quality over quantity is how much suffering comes along with it. Right now, I can say I have not suffered any physical symptoms or complications which, for me makes it easy to say I can go through treatment again.
At this point in time I do not feel I can decide for myself since I feel good.
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@melissa Speaking from my own experience, some of that will come with time. As you go through your journey and as the information posted today suggests, this will be a fluid decision. It will not remain the same. I know that currently, I don't like the side effects of my new medication and am speaking to my team about either switching back to my old one or trying something different. That is a quality of life thing for me and I want to feel good not worse especially when faced with a possible surgery that I currently don't know what they will do. When I was in hospital in January and was in the Emerg Dept, I was next to someone who had a trach in. Well it kind of wasn't in where it should be and they were having much difficulty getting it back in place. The person was non-verbal for the most part. Listening to it all brought tears to my eyes and in my head "that was not living". So, I decided then that it is also not something I want to experience. For me, these are learned or lived experiences that one comes upon and may make decisions on based on what you experience. There are many stories on Wellspring.ca that speak about this very topic and how some even come off all treatment, do experiences with the family while they feel well and for them, that is their quality of life. For others, that would horrify them and they would not even consider having no treatment. It is so individual isn't it?
I am sure, you have seen a lot in your career and may have had thoughts about certain situations and what you may or may not want. It may come down to being "in" the situation before you decide as well. That is okay too.
Again, I posted it so that it is food for thought as we all continue on our journeys.
I have signed up for a local event that is based on the webinar I posted that is put on by our local Hospice. I will post anything meaningful from that evening next week after I have gone to it. Interesting how the universe brings you the things you put out there.0 -
@Strongwoman that's disappointing that your new treatment is giving you unpleasant side effects. It hasn't been that long has it? A few weeks? Is it possible they will subside, or are they that unpleasant for you? Either way, I can imagine.
Perhaps a dosage decrease?0 -
I was diagnosed with stage3a OC in September 2010. Had full Hysterectomy...often say "gutted like a trout". Post surgery, Dr came in said tumor was worse than thought. "You'll need chemo" and left the room . Gobsmacked, I asked for someone to come explain what comes next. Social worker came in explained so much... and demanded the the Dr come back to clarify and apologize. Had 6 months chemo. Simultaneously, my 2 eldest discovered they were preggers with my first grandbabies. Voila, my reason d'etre presented itself. Many complications, over a dozen surgeries later...I'm still standing. (Sort of) Life got very complex. Autoimmune diseases, Had to retire early due to disabilities, Mother passed from cancer within a month of her diagnosis in 2015. Simultaneously, Father went into care for dementia for last 9 years. Had to retire from work in 2013 due to disabilities acquired .Here I am 14 years later, 6 grand kids...a couple of well planned vacations. Friends who were afraid to watch me die ,have come back into my life. I use a walker now (2 years). I have learned "let go" ..not sweat the small stuff. So many meds for so many organs being compromised. I take one day at a time . I had sequestered during the pandemic...and avoid crowds, still. I say I love you every chance to those I cherish. I judge energy levels on a day to day basis. I may not be the adventurer ,wild and crazy woman I once was...but I have grown to become lovingly content and in charge of what I can and cannot take on day to day.
I have been lurking on this page for a few years. Sometimes I cannot get thru some posts, as the empathy I feel for you teal sisters can be overwhelming. I do not want to spook some of you just starting your survival track. I care and appreciate this place for the kindness, caring, and suggestions and advice. But I AM STILL here to give and get the love from those who stuck in there with me. I have a good quality, low stress existance. Life is a different pace. But the calm I have of accepting whatever comes have given me both quantity and quality of life I did not consider possible at the time of diagnosis. Chin up, try to stay positive..feel everything you have to feel and then shuck the bad stuff as much as possible and keep on keepin' on. I am a survivor.
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Yes it is a bit disappointing. It has been 8 days. After checking with the pharmacist, is what prompted the call to my team. I, also, thought they may subside but alas they are not. Not sleeping well is not one I am willing to play with. I also want to be at my best self when I head into surgery (if that is what is decided) so that hopefully recovery isn't as rough.melissa said:@Strongwoman that's disappointing that your new treatment is giving you unpleasant side effects. It hasn't been that long has it? A few weeks? Is it possible they will subside, or are they that unpleasant for you? Either way, I can imagine.
Perhaps a dosage decrease?
This medication was suggested by PMH to try and not a necessity to switch. Tumour markers are up slightly (between 6-10 increments) so no big jumps that would warrant not staying on Letrozole.
For me, I feel it is the right decision for now. I will keep the Tamoxifen for a few months and if I don't need it, will return it to the pharmacy. All good. As I said to my hubby "Life is too short to feel unwell when we can control some of it."0 -
@Coko Thank you for joining in on the conversation and forum. It will be inspiring for many on this site to read about your own personal journey.Coko said:I was diagnosed with stage3a OC in September 2010. Had full Hysterectomy...often say "gutted like a trout". Post surgery, Dr came in said tumor was worse than thought. "You'll need chemo" and left the room . Gobsmacked, I asked for someone to come explain what comes next. Social worker came in explained so much... and demanded the the Dr come back to clarify and apologize. Had 6 months chemo. Simultaneously, my 2 eldest discovered they were preggers with my first grandbabies. Voila, my reason d'etre presented itself. Many complications, over a dozen surgeries later...I'm still standing. (Sort of) Life got very complex. Autoimmune diseases, Had to retire early due to disabilities, Mother passed from cancer within a month of her diagnosis in 2015. Simultaneously, Father went into care for dementia for last 9 years. Had to retire from work in 2013 due to disabilities acquired .Here I am 14 years later, 6 grand kids...a couple of well planned vacations. Friends who were afraid to watch me die ,have come back into my life. I use a walker now (2 years). I have learned "let go" ..not sweat the small stuff. So many meds for so many organs being compromised. I take one day at a time . I had sequestered during the pandemic...and avoid crowds, still. I say I love you every chance to those I cherish. I judge energy levels on a day to day basis. I may not be the adventurer ,wild and crazy woman I once was...but I have grown to become lovingly content and in charge of what I can and cannot take on day to day.
I have been lurking on this page for a few years. Sometimes I cannot get thru some posts, as the empathy I feel for you teal sisters can be overwhelming. I do not want to spook some of you just starting your survival track. I care and appreciate this place for the kindness, caring, and suggestions and advice. But I AM STILL here to give and get the love from those who stuck in there with me. I have a good quality, low stress existance. Life is a different pace. But the calm I have of accepting whatever comes have given me both quantity and quality of life I did not consider possible at the time of diagnosis. Chin up, try to stay positive..feel everything you have to feel and then shuck the bad stuff as much as possible and keep on keepin' on. I am a survivor.
It sounds like your surgeon did not have any bedside manner at all. I am sorry you had to go through that especially after such a big surgery. A dozen surgeries eh? I can't imagine having that many currently, myself but again, one day at a time and make decisions as one goes along. That is what I feel is resonating in your post. I, too, had to retire earlier than I wanted but am thankful I did now. Grateful to have the time with family and friends and time for myself too.
Was it hard to watch friends "leave your life"? I found some of them surprising as to who they were. When they returned, was it more of a "don't talk about it and let it be" or were there discussions around it? Curious is all. I am not sure what I would do. I know one I have seen and welcomed them back and stated "I was in a different frame of mind and person then than I am now and to reach out again". As of yet, they have not.
You do have what I would consider a good handle on your life and outlook. It prolly comes with time a lot of it.
I appreciate you being open and honest about some of the topics that are discussed on this forum and how you responded to them. Some are very hard and dark topics that I don't want to shun on the forum. Hoping to meet everyone at "where they are at" and allow free conversation. I hope that comes through, anyways.
You have given some sage advice and I, for one, hope to see you a bit more on the site. When you are up to it, of course.
In the meantime, thank you and take care of you. 0
