Ibrance (Palbociclib)
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Candy, I’m with you! I don’t smoke or drink alcohol.. I eat! I told my onc that that’s not about to change. I am a huge sweet lover and I’m gonna keep eating whatever I want. I’m already overweight but honestly don’t care, if my time on earth is numbered, I’m going out fat and happy.0
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Lynnwood1960-
Amen to that !!!!!
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Noblica, dobrodošli na forum. Da li govorite ili čitate engleski? Bilo bi lakše dobiti odgovore. Mislim da je većina nas Amerikanci ili Kanadčani, a nisu upoznati sa mnogim jezicima Evrope. Srećno, Google prevod je ovdje da pomogne
.Noblica, welcome to the forums.Do you speak or read English? It would make it easier to get responses.I think most of us are Americans or Canadians and we are not very familiar with the many languages of Europe.Fortunately, Google translate is here to help :-)
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Ciaci- What you probably have are paresthesias (abnormal skin sensations like tingling, numb feeling, itching, burning etc) from the chemo- usually taxol. I have that and it is worse when lying down, I do think that Ibrance has made it worse. I can feel a pin prick- although my sensation is that it is numb. It is from peripheral nerve damage. I don't have the burning which is good- I do notice that many of my nerves are more sensitive to positions esp when lying down.
As far as Shortness of breath goes- I think many of the doctors don't ask about side effects, so don't know about them. ie- a talk I listened to said his patients complain of runny nose- and the consultant doctor said that is very rare- are you asking people if they have runny nose or SOB etc- if you don't ask- you don't know how often they happen. I'm a little anemic, that may contribute to SOB, Im not overweight and I do exercise- so my sense it that it is the drug causing it-makes me worry a little- then I push fluids and try to keep going. You probably know way more about your cancer and your meds than your primary care doctor- it is not their specialty- keep advocating for yourself-
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LovefromPhilly, I'm a pretty good baker, so we'll have some great cookies together! 🍪🍪
It's funny you mentioned compliance. Generally I'm not! However, since this dx even my husband agrees that I've been "surprisingly compliant" ha ha.
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oh yes!!! You've just got yourself a friend forever
😋 my nickname in grad school was “Cookie Monster" cause I love cookies so much!And yeah - with regards to compliance. Isn't it funny? I had no idea if I was or wasn’t a compliant patient until this all happened. Now I have all my friends and family telling me how proud they are of me with regards to how compliant of a patient I am! My dad keeps saying: “whatever you're doing, it's working. So keep it up!" I've only half-missed one dose of Ibrance in 16 months. I am amazed with myself!
Here's a pic of me in my happy place, in my element (nature!) while here in the PNW. Hope it brings smiles and laughter 🤗
Hugs! Brenda
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LovefromPhilly, that's an amazing photo. Did you gingerly hug your way all around?
"Hugging and chalking" (old, old song recorded by Jerry Reed)
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lol I did!!!! Hahahaa! Now I have to google that song :
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Love your happy place.💞
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I attribute my SOB (during exertion..usually anything vertical, like steps or intense cardio) to Ibrance.
I make sure I am hydrated and adjust my exercise pattern.
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Noblica, can you translate to English? Do not want you to think we do not care about you.
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Love the tree, Brenda! I think that we all know that SOB is an actual SE of Ibrance. We should educate our doctors, at least those who are educable. Mine typically is.
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Getting ready to start round 8 of Ibrance with Faslodex tomorrow and feeling much better. It took about 6 months of having various side effects each month before we figured out a solution to help. I experienced dry skin, diarrhea, low electrolytes, fatigue, stomach discomfort and horrible gas, itchiness, red watery eyes, etc. Not all at once, of course! LOL No matter how much water I drank or how many electrolyte drinks I swallowed, I remained very dehydrated with very low electrolyte levels. The doctors decided to try hydrating me at the beginning of each cycle and that did the trick! No more side effects! My electrolytes are still a little low but climbing. Such a simple thing to do and such great results! Best news of all, my last scan shows a decrease in mets! Yay!
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NMJanet, yay for good scans and yay for fewer side effects! I'm in the off week after round 5; SE's worse this time so I'm interested in the hydration. Keep us posted how you're doing.
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It's been a while since I've been here....so much good stuff going on with you ladies!
PatG - Thank you for the post on 8/4. Good stuff. I've found the conversations about cancer markers helpful. My cancer marker went UP 1.8 points this month. This after an 18.3 DROP last month. I hear it can fluctuate up and down a little. I was glad to learn about marker flares.
LovefromPhilly - I loved your tree picture!
NMJanet - good to hear from you! Glad to hear about your scans...I have my first scan since starting Ibrance on August 31. Oh boy!
Been sad about my hair. It seems to be thinning really quickly...I lose a lot of hair everyday. Keep trying new things on it. Sigh.
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Hi all, I haven't been on for a long time now. I'm still processing the news that my tumour marker is going sky high, although my CT showed my organs are still clear. Normally we take no notice of tumour markers as mine have always been high and used to zig zag on the way up but now they're jumping by more than 100 each cycle. I've having a bone scan again tomorrow, although the last one was only 3 months ago. My pain has worsened and my mobility is ...well.... almost immobile, despite no change in my normal daily routine. I'm taking so many pain meds that I'm almost incoherent when I try to write in the afternoon which is why I'm writing this in the morning.
At my last appointment my oncologist told me that the Letrozole/Ibrance combo has been failing me for some time, which I knew from the figures and the way I feel. As I'm on a trial for that combo we have to prove progression so that I can be removed from the trial and then he's thinking of putting me on Exemestane as an AI with Everolimus as a targeted therapy. My worry about that is that they have to start me on Exemestane as an AI but Everolimus cannot be given till progression is proven. Further, even though I've known that I'm just buying time with all these treatments, these treatments can only buy me a few more months. After that I can have chemo if I choose but it will only buy me a further 6 to 12 months. Personally, I can't see the point in using chemo to buy time unless it's quality time so I'd give that a big miss. I'd rather go out feeling something like I do now and have people remember me as a cheerful, happy soul. I'm told I have somewhere around a year to eighteen months to live and I am at peace with that. I just don't like the thought of leaving my beautiful son but he's an adult, fully able to look after himself now.
This seems to have come along rather quickly but I was diagnosed de novo with my bones already loaded with mets so my surgeon estimated that i'd had it for at least 2 years before I was diagnosed. Those of you who know me know I'm an eternal optimist who doesn't give up easily so I'm still positive that this prognosis won't beat me!
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dear leapfrog,
When I first started reading and posting on here, you were one of the first names that stuck with me and I’ve always felt some kind of sweet kinship with you and from reading your posts.
I’m sure what you are going through is really scary and I hear ya about the chemo. I fully support you and whatever choices you make. I trust that you do and will decide what is right for you and your QOL.
I haven’t had any chemo infusions yet so I can’t soeak to it except all I know from reading on these boards is that for some people, it lets them live for many more years and others maybe not as long. I’m sure many others on here can comment much better than I can.
I also know that some people do extremely well on chemo with some fatigue and maybe acid reflux while others seem to get quite sick.
I don’t know what the right answer is. Remember to breathe laugh get fresh air cry and vent as much as you need to. Big hugs, brenda
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Hi All,
I was really feeling down and decided to come here to see how you all are doing. Thanks for making me think and smile as usual. Joyner - I was born in Milwaukee and love Sturgeon Bay and Lake Michigan... enjoy, enjoy
LeapFrog - I haven't posted for a long time either, but I lurk and I've missed your sweet, supportive posts. Sending warm and uplifting thoughts your way as you struggle with decisions that are best for you. I SO get your reluctance about the chemo. Hugs
I'm still on 100 Ibrance and faslodex, and this is my 11th month on the treatment. I have appreciated the talk about shortness of breath, because it's something that has really bothered me, but I have mets to my right lung. My tumor marker keeps going up and onc wants to scan and then change treatments... ugh
Just wanted to peak in and say thanks for being here all of you!
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Leapfrog;
I'm so sad that you are going through this pain. After my ovarian cancer I was having the tumour marker CA125 regularly and it was going up. This is an ovarian cancer TM and my CT's were clear. It was only when they expanded the CT's to include my chest that they found the tumours in my lungs. Just a heads up in case they should expand the search area of your scans. I'm praying you find a solution for this problem. Also, my oncologist has had my tumour genetically tested at Invitae Laboratory in the US. The tumour has of course some mutations and all drugs which could fight these mutations will be offered to my onc if Ibrance fails through a program here in Ontario. Perhaps this sort of thing might work for you without the need for chemo. I have had quite powerful chemo twice. There is fatigue throughout but I found the other se's doable and was prepared for them the second time around......for example I had my tylenol 4's ready for a few days with taxol. But I would want to be quite certain it would work to go through it again. If it would work for you it might lessen the pain?
God bless, Cathy
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Leapfrog: People withdraw from clinical trials all the time. They withdraw because they don't like the side effects, or they have moved and don't want to travel, or just because they are tired. Why do you have to wait for evidence of progression? That doesn't make sense. You should be able to switch to something that will hopefully be more effective now. Your cancer was difficult to diagnose and so it may be difficult to prove progression. You don't owe the drug company providing the clinical trial or the physicians running the clinical trial anything. Will the OZ health care fund estimane and erevolimus? Something is fishy here.
Hobbes
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Leapfrog, I'm sending you a big hug as you decide what happens next. I wondered the same thing as Hobbes - why can't you stop the trial on your own? About chemo, I have a friend who is taking Halaven and it's working quite well without lots of side effects. I will keep you in my prayers, friend.
Love from PatG
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Leapfrog. Sending lots of good vibes and hope that you can find peace with your decisions. I did chemo my first time around. AC was a bear but Taxotere was ok for me but I was 13 years younger than I am now. I feel for you as you face these decisions and send prayers for peace and a relief from pain. You are an amazing woman and you have given me so much positive energy over this last. year. Sending hugs and prayers. Maire0
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Leapfrog--sorry to hear the news. Hopefully they will find it and knock it out!
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Girls, thanks so much for your thoughts, hugs, advice and wise words. They are so much appreciated and I'm sure you know that. I might not have expressed my post very well, I think. Firstly, I haven't yet seen the consultant who is the trial manager. He's actually my oncologist. I saw his senior registrar with whom I have a good rapport and I've seen him a number of times but Tim, the registrar, isn't the one who discusses with me what we'll do about the big decisions. I know I can pull out of the trial but until now it hasn't been obvious what's happening with my TM as it's been bouncing up and down (but in an upwards direction). Until now I think we weren't prepared to see that Letrozole was failing....at least I think that...but I'm guessing. My son, who always comes with me because, sadly, my husband has bailed out of helping with the adult decision making, asked Tim about Fulvestrant/Fasiodex as we half expected that came next but Tim said, no, not in your case and said he felt the two drugs, Exemestane and Elverolimus (I'm not too sure of the spelling yet) would be the best two for my subgroup, but that he would discuss it with Andy as Andy is my consultant and is the one to help me make decisions. At the time this made sense to me. I felt we shouldn't give up on the Letrozole/Ibrance combo until we're sure as I don't want to run through all my options too quickly. My main line of thought lies in waiting to see my next tumour marker in two weeks' time and comparing todays scan results with my last one.
As for chemo, if I were to be told it would give me a good quality of life along with a longer life span, of course I'd go for it but Tim said that it would only prolong my life by six to twelve months. I know I'm repeating myself and I'm doing so because you're all such a mine of information and it might help me clarify what's happening in my thoughts. I need to speak to Andy, the Senior Consultant before I can come to a decision, obviously, because of the fact that Tim is a registrar, not a consultant. If I were to have chemo, it would be my son who would have to look after me if it made me very ill. I don't want him to have to do that.
I'm seeing a breast care counsellor on Friday. They're provided free here in Oz to help at times like this because I know my thoughts are muddied up by my marriage problems. I found out last year that my husband has had another woman in his life for the last ten years (supposedly platonic), which is what contributed to the reason my cancer wasn't discovered earlier. Any caring husband would have been at the appointments I attended ten years ago when I was told I had calcifications. He's a doctor for goodness' sake! The breast surgeon I saw didn't tell me that calcifications can lead to cancer. I had no idea, but my husband tells me now that they should have been closely watched. But they weren't. I was given two yearly mammograms like any other patient and there was nothing on my file to indicate that I was an at risk patient. Sorry to rabbit on but I think it might help you to understand the underlying story. If it weren't for my son, I wouldn't be here now. It's been my son who has taken me to every appointment for the last two years and has sat with me to receive whatever news we were given. My son has been at breaking point many times at the thought of losing me because we're soul mates but also because he has SO MUCH physical and mental work to do in caring for me. The thought that my husband could keep such a huge secret from me without my ever guessing (and I'm not stupid!) fills me with dismay and the thought that he is still doing only the minimum to help us breaks my heart. I've moved out of home for the second time and am living alone in an apartment close to my son's apartment because I really don't want to see my husband but I want to spend as much time as I can with my son.
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Leapfrog-
I am so sorry about your marriage. Thank God for your son.
Have you had scans yet? What kind? CT of chest and abd, PET, MRI? I thought tumor markers were only one part of the equation and a person needs scans to show progression, that we don't change treatments with TM's alone. How do and your doc know that you are progressing and the meds aren't working?
Do not give up. Keep us informed of your scan results and new options. I am praying for you.
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leapfrog. I'm glad you explained. I remember the first time you moved out. Sorry, but I'm just gonna say it, your husband is a jerk. Your son, on the other hand, is not following his father's example, PTL. I know you don't want him doing too much for you at this stage in his life but it's admirable that he is.
My MO does not do tumor markers and I'm glad she doesn't. I think I would get all mixed up with the up and down of it. It's true that even a doctor cannot make a prognosis without having a scan and BX results. How can he he tell you 6 months to a year without the mandatory facts needed. That's not what scientists do. So, try to remember you don't have all the facts yet.
What are your symptoms? When was your last scan? How much longer do you have to wait? It sounds like you are not able to drive and stairs are hard for you too. I'm hoping you'll get the answers you need to all the unanswered questions you have. But, remember answers are not useful if they aren't based on facts. And you don't have facts yet.
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Leapfrog;
Your husband is an ass. Plus a poor doctor as he should have told you about the calcification regardless of his relationship with you. They do have an oath. I suspect it's harder for your son to know what an ass he is than any effort he makes to care for his beloved mother.
I can't help but think that doing chemo while having your tumour genetically tested for mutations and a further treatment is lined up would be reasonable. Chemo could really knock back the cancer and then you would have time and more information for other treatments. We none of us are really looking for a cure (well of course we are deep down but have been told not to) but longevity with QOL to enjoy those we hold dear. I only know that chemo has been very effective in my case....both times. And I do believe lessening the tumour load would relieve your pain. God bless
Cathy
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Leapfrog, I wish that I had fabulous advice to give. I'm holding you in my heart and prayers. Thank God for your son.
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Leap frog: Do consider radiation for bone pain. It can be very helpful and will stabilize your mets. I had extensive rads last year from my neck to my femur and it helped so much. I was using a wheelchair for long distances then and now walk everywhere. It always concerned me that the clinical trial you described forbade radiation. It doesn't sound like a trial that would get ethics approval in North America. As a psychologist, I have participated in several clinical trials for paediatric cancers and none would forbid palliative pain radiation. If your bone mets are getting worse, your current meds aren't working, so you need something else. BTW Havalen is the patent name of estamane.
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Back again to catch up on the last few days. So many stories and situations. My best to all of you. At whatpoint is surgery needed to remove parts of spine? That sounds so scary. I have a lesion on T11 and also one just below it. Uptake throughout pelvis and spine. No pain yet. On my first break week from Ibrance and awaiting blood work this Thursday to see if I can start again. WBC was at 1.6 last Thursday. At what count do they allow you to continue? What are your best suggestions for insomnia? It seems worse this week. Thanks and blessings to all.
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