Ibrance (Palbociclib)
Comments
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I also have lots of dizziness which has gotten a little bit better since I stopped all my allergy meds but my head and sinuses feel awful. I'm also anemic but my MO never seems concerned. Blood work tomorrow so I'll see if that shows anything new to think about and then ask the MO.
JFV, I also get very breathless climbing stairs especially after a meal and if I'm carrying something. Mine seems to be from my cardiomyopathy which resulted from my Chemo treatments years ago. However, shortness of breath is a SE of both Ibrance and Letrozole as well as my BP meds. I have been trying to exercise more and that seems to help a bit.
I also have some ankle swelling at the end of the day, but Dianarose I think you should ask the MO about only one leg swelling. That seems unusual. Could it be lymphedema from any lymph node removal in the lower half of your body?
Hang in there everyone, each day is a challenge but we can do this!
Sleep well, prayers for all of us here,
Faith
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Dianarose, my MO told me to be cautious if only one leg and/or ankle is swollen. Sounds like you might want to check on it.
I don't get dizzy but I do get breathless going up stairs, and I get tired immediately when I bend over much. That is a lot in a household with a 2-year old!
Singlemom, I would love to go back! The first time we toured Italy for 10 days and then took a Mediterranean cruise for an additional week. It was absolutely marvelous! The advantage of the cruise was the option of taking it easy if I needed to!
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I am no longer anemic! The iron did work for me. I also no longer bruise if you touch my arm. I hope it works. Hugs ! ~M~
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I looked at my labs from last week and my mono was over 16. Had been normal. What the hell does that mean?
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Dianarose, I just had my blood work done today and looked at the results online and I don't know what mono you are looking at. There are several things that you might call mono but nothing listed that way so I'm afraid I'm no help. Has your MO commented on it yet? Im assuming you will at least call the office and ask.
My MO usually comments on my tests stating things look "ok" or if something's a little too high or low. He will check them tomorrow I'm sure and let me know but just looking at them on my own, they look fairly ok to me. Tumor markers are all in normal range and other things while a bit low or high are similar to past results so I'm feeling pretty good so far until I hear from him. On to rd. #19 on Thursday, so hang in there things will get better. I had a rough start in the beginning months of these drugs with lots of side effects but either I'm so used to them by now or it's just my "new normal ". Of course, I still keep looking at that 22-24 month TTP, just can't help myself. Till I hear otherwise, I'm calling this good news.:-)
M- yea on the anemia. Good for you! I'd like to take iron for the anemia but I don't even ask because I have so much trouble trying to stay regular.
Sleep well everyone!
Hugs and prayers for all.
Faith. (In the future).
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Hi Faith. Started round 19 yesterday. Here we go ...
>Z<
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Off for the dreaded three shots this morning 😖. Pain in the butt, literally lol.
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So bummed out! Each cycle of Ibrance my Ca27-29 kept coming down. Last month was 103 and today 120. The thought of going back on A/C is something I am not sure I even want to do. After 13 years I am tired. Has anyone else have this happen after just starting the 4th cycle?
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Dianarose, My CA27-29 have been going up and down a bit each month for the past several cycles after originally going down. The haven't changed more than 25 points each time, and they are currently 155. Since there has been no upward trend or big jump such as doubling, my MO was not concerned. It turns out that he was right. My recent scans showed improvement in liver and bones. I don't think that you should worry at such a small increase.
Lynne
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- 50'sgirl- thanks for sharing. Anytime it goes in the wrong direction it's stressful. Scans will be next. My scans are always difficult to tell what's going on as it's lobular and just doesn't show up well. What were you at before Ibrance? The rest of my blood work so far looked good with platelets at 275.
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Dianarose. Before I began Ibrance my tumor marker was 288. It had doubled to 288 before progression was detected and I was switched to Faslodex and Ibrance. In the past few months it has been 151, 177, 154, 133, now 155, no trend, just bouncy. Ibrance sometimes does strange things to tumor markers. Several people on these boards have reported inconsistent tumor markers in spite of stability or improvement on scans. I know how you feel TM increases make me nervous, too. You have had more than your share of issues, and I hope you see good scan results.
Hugs and prayers from, Lynne
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Hi <Z>, on we go! Let's keep this run going a long-long time!
Dianarose, I'm sure it's very stressful when you see those tumor markers going up, I know it is for me when it's even just a little but Lynn has given you some wise words. You and everyone here are always in my prayers and I truly believe prayer works.
I think it was <Z> Or someone here, who has said here that dying tumor cells can make markers go up so hang on to those good thoughts and just imagine those bad suckers dying!
Hugs, Faith.
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Faith- I have read several articles on wether or not dead cells can cause a rise in markers. Some say yes and some say no. After awhile you don't know what to believe. When I see her again in 4 weeks she will redo the tests and order some scans. If my regular blood work in between gets out of whack I am sure it will be sooner .
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Faith and Z, It looks like you are both beginning your 19th cycle of Ibrance and Femara. Woohoo! Don't for a minute fear that you are getting close to the end of its effectiveness. Look at the real meaning of the stats from the trials. That 22-24 month number that you are seeing is not the maximum progression-free period. It is the median, so half fall below and half fall above that number. That means that half the participants in the trial were on the treatment for more than that time without seeing any progression. There are some people who continue on it even today, so no one has any idea how long it can work. You are both doing doing great. I choose to believe that you two, and many others on this thread, will exceed that median. 19 cycles? You are just beginning, ladies, so keep on going! Here's to many more years!
Lynne
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Lynn, thank you for you kind words of encouragement. I want to believe we will all be on this for a long, long time but it's sometimes hard not to let those little doubts creep in.
Dianarose, we'll pray the blood work is showing dead cells. I read recently maybe here or on another thread that having hope helps you live longer.
There is also another thread called "Thin slices of Joy" that I follow started by Serenity Stat. The premise is that finding little slices of Joy in your day boost your immune system and the more you look the more you find. It's a great little thread, check it out. I had a big slice of joy today having a two hr. lunch with old girlfriends I don't see often enough. It makes me feel very lucky to have friends to share with and not talk about cancer all the time. They know some of the stuff we go through but not all and that's okay.
Hugs to all, here's to hope and joy in our lives.
Faith (in the future).
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Faith- thanks. I try to have hope. Will admit I do have bad days here and there.
I don't have much experience with vitamins and never took supplements or had my levels checked. Recently they put me on vitamin D because my level was low. My primary just checked my B12. The normal range is 200-800, mine came back at 1357. She said when she checked it in November they were over 19 thousand! She never told me. I was on a liquid diet at that time so it makes no sense at all. Wasn't because I was eating Prime rib every night. Has anyone experienced crazy numbers like this
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hello all
I am just wondering if any of you ladies live in Ontario Canada that can assist me on how I can get funding for this drug. I am 63 and plan on retiring soon. I do have a group health insurance plan that only covers imbrance up to a maximum of $10,000.00 per year.
We simply do not have 7500.00 per month to put out of our own pocket to pay for this drug.
Thank you
Cathy
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Cathy, I hope someone from Canada will weigh in soon but if I remember right, I believe there are a few getting it from the manufacturer or through a drug trial. Here in the US, I qualify for free Ibrance direct form Pfizer. It has to do with being on Medicare and being below a certain level of fixed income. There are also charities who will provide help. It's a matter of finding the right help. Can your doctors office help?
Dianarose, I have never heard of crazy numbers like that. I also have never had my B-12 level checked but I did have my D checked and it was low but I don't remember what the number was. I do take extra D3 though. Sounds to me like you need to find someone to,help you make sense of those numbers.
Dianarose, we all have bad days sometimes more than on occasion. How can we not? We just can't let those days stay in our heads too long. Let's all hang on to hope.
Hugs and prayers for all,
Faith (in the future).
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thank you Faith. I am pretty anxious here. I thought I would pass the clinical trial for ribociclib but it looks like I will not. I had no idea there drugs cost so much money.
Cathy
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Hi Cathy,
I'm from BC so unfortunately can't be much help. I am fortunate that my extended health covers the cost, at least for now. At the price I will burn through my lifetime maximum in pretty short order. But I know Pfizer is trying to get it covered under the Canadian MSP plan. I hope with good solid results and the competition nipping at Pfizer's heals the price will come down soon.
Hope you are able to find some support.
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thank u Sadie. I a man terrified of my recent stage 4 dx and getting on something. All so overwhelming. How are you feeling on the medication? Good results thus far? I wish u all the best
Cath
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Hopefulgirl, please contact Pfizer headquarters and explain your situation. There is every reason to be hopeful you can get Ibrance free. Please go back and read posts from some of our Canadian sisters here. There are many of us with bone mets who are doing extremely well and we want you to join this Ibrance success club. Don't give up until you get what you need....You're worth it! Love and a hug!
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thanks lynne. I asked my primary care practitioner today to do a breast exam. my oncologist has stopped doing them and i was curious because my breast burns and aches at a low level right in the areas where the cancer developed ... left side of left breast into armpit. practitioner felt nothing at all... which is pretty cool because I had monster lumps in that breast ... both cancerous and benign 18 months ago.
my last scan was a pet scan that didn't address whether there were any non-hypermetabolic tumors in my breast ... in any case, i pass a professional breast exam with flying colors these days ... without surgery. that felt good.
i also want to put out there that i have definite pain in my breast where the cancer was, but it seems to be the breast just dealing with getting rid of all these lumps. it can be disconcerting but it's apparently a good thing. i thought i would share my experience in case anyone else has this going on.
hugs everyone. hope you are staying cool.
>Z<
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Cathy, your oncologist office should know of all the programs that are available. Also, your hospital should have a. Social worker associated with the helping the diagnosed patients find the medicine that their patients needs. Call them immediately, it takes a long time to get the paper work through. Also, I believe I read in the paper work that the open application for ibrance has passed since it's so overwhelmingly in demand. Pfizer has closed the help program, but there are other charities that your hospital social workers only have access too. Sometimes Pfizer has hardship programs as well. Start with your hospital and also call Pfizer directly. They sometimes have those $10 co pay cards!! Sending prayers this will go easy for you. ~M~
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<Z>. Thanks for sharing the great news on your breast exam. While I don't have that issue, it gives me hope that the Ibrance is doing the same thing on my lung and nodes where the cancer "was".
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Zarovka - I'm getting weird pains where the lump is, I've been taking Ibrance for three months and will have my first scan next month (the lump has definitely shrunk a bit). Anyway, my onco mentioned that he would consider a mastectomy if the scan results were good. When I was diagnosed in January all I wanted was to get it out of me, was so disappointed that surgery wasn't the procedure with MBC - now I'm not so sure. Your post gives me hope that maybe maybe Ibrance would take care of it in the long run. Thanks everyone that posts regularly. It's a lifeline. x Lucia
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Thank PATG and MIcmel. I am on a roll now with getting paperwork completed from hospital and 20 percent of cost from Pfizer - the navigator at the cancer centre is pulling up other programs in Ontario that maybe able to assist. You ladies are awesome and I am so much more hopeful.
Do either of you know about ribociclib? This is a clinical trial that i was initially to go with but there is an ECG component that the clinical trial nurse feels I will fail which will exclude me from the clinical trial. Thus imbrance is our backup plan.
If the funding for imbrance comes through 100 percent for me I am gently considering opting out of the clinical trial and trying to start imbrance immediately. I asked my MO which drug was more effective imbrance or ribociclib and she said they are the same.
Your thoughts are appreciated
Thank u Cathy
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Hopeful~ I have been on Ibrance for 7 full months. Each month I feel better and stronger, I went through traditional chemo and my butt was whooped. This medicine for me has been very easy. There are many trials that are up and coming that we don't even know about. The drugs are very similar and since I have been on ibrance have been considered very stable, there are women here who have been on it for 19 months or more. Others will chime in on their opinions of the drugs. Personally I don't see much difference in what I have read. You will get the assistance for the Ibrance. Hospitals social workers are there for that reason. Mine is my hidden angel in all of this. She's been amazing for so many reasons. Good resource for information about everything. I am going to ride my ibrance wave until I can no longer get on the surf board!!! Take a deep breath and relax. You're certainly not alone and I can say the longer I am on it, the better I feel. Fatigue comes and goes. But Ritilan has been amazing in helping me get over my 230 nappy time during the days,and I am trying to keep active. Last week only clocked in 17 miles jog/walk. But am slowly working towards that. One day at a time is how i approach everything. I am now thinking about actually taking a trip for the first time in over a year and a half. So I am hopeful this will work for a long time. My pallative care doctor has three women on this medicine. (Not including me) and they have one who has 65 months and still going the others are around the 35 to 40 month and still stable and or they have shrinkage. At first it was a little hard to adjust, I have good weeks and bad weeks. It's not a magic pill but I feel lucky to have the chance to take it. Prayers all around ~M~
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Dear MIcmel - wow is all I can say as I breath a sigh of the relief since June 15th. I am so happy to hear your good news!!! I don't even know what to expect when I am in a clinical trial. I signed up, this week for the clinical trial, only to learn that it looks like I might fail the ECG portion. I immediately thought even if I am close. Do I want to take that chance with my possible heart problem which was likely caused by AC AND Taxol chemo on first dx in 2004. So imbrance was my backup plan and now it is starting to look like I might get close to 100 percent coverage on imbrance.
So I am now thinking why not relieve some stress and not go for the ecg next week etc and just meet with my MO and start imbrance immediately. The navigator from the cancer centre is to call me back before 5 today or tomorrow and advise whether she definetly has coverage for the imbrance for me. I feel there is light at the end of this very dark tunnel. Prayers and hugs sister
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Hopefulgirl, not to get in your business but I think the decision for Ibrance over the trial is a no-brainer. Back in the Fall when I mentioned a trial, my oncologist said, "Ibrance + an AI are showing amazing results. Why would you not try that first and expect great things?" So I did and I've had great things happen with almost all bone mets looking like scar tissue after 9 cycles. I've gone from widespread mets to only two places with uptake on the PET. I've not heard of anyone with heart issues and mostly, after the initial phase of odd side effects, we settle into incorporating fatigue into our daily lives. I would suggest that you ask for 100mg. I've been doing that from the beginning and have had no delays caused by low blood counts. My oncologist gives 100mg to everyone and they've all done well.
I pray that you will find peace in reading of all the long-term successes here, Hopefulgirl. We all were once scared to death of the MBC diagnosis because of the stories we heard in the past. Now we know we are pioneers in a new way of looking at the disease. People with diabetes and kidney disease don't start picking out their funeral songs and neither should we! You will get your Ibrance and you will join us in this dance of life, my friend!
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