Ibrance (Palbociclib)
Comments
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Sadie - just read your recent post and will be very interested to know the outcome re Ibrance. I'm on Fas alone but MO would prefer Ibrance with it. Fas is not funded in Quebec either. Luckily my ex-employer's medical insurance covers roughly 67% (but with no ceiling). Then I checked the AstraZeneca website and from there obtained a co-pay card from innovacare.ca which reimburses 20% of the Fas cost. Out of pocket cost for me is roughly $200.00 per month.
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Sadie~ I am so happy to hear you're moving forward with getting your ibrance through the company. The director of the trials told me specifically that was the way to go !! You're all in my daily prayers. Stay strong. Will pray you have medicine In your hands soon!! ~M~
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Dee - I got a nasty UTI that went systemic during my second cycle on Ibrance. Took horse doses of Cipro, which is nasty stuff. Never considered dropping Ibrance. It all worked out. If you have concerns, you might make an argument for lowering your Ibrance dose, any argument you think might work. But personally, I would not stop taking Ibrance if I had an infection. Wound healing is another story... the data shows it does inhibit wound healing.
Do watch your gut. I believe in following the rules of trials, but you really need probiotics when you take anti-biotics. If they are "prohibited", drink kombucha, eat kimchee and yogurt and tell them you sprinkle livd bacteria on your cereal because you like the flavor!
Sadie - great progress. I agree ... they don't collect forms from patients because they like to collect forms. There is a procedure to get the stuff and you have figured it out. Nice work.
>Z<
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Thanks >Z< I wanted them to do labs to see if my counts were really low because I just can't shake this thing. Didn't mean I would drop it altogether. I don't want to go down to 75mg, I'm at 100 right now. And the trial does allow probiotics, I already take them everyday, eat greek yogurt everyday & try to have apple cider vinegar with the mother, often.
Linda, that's interesting about Faslodex, because my last MO wouldn't even talk to me about Fas if I didn't have extra insurance. I will keep that in the back of my mind, just in case.
cheers, dee
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Dee - There is some evidence from the phase III that the 75mg dose of Ibrance is marginally less effective so, yeah, soldier through it at 100mg. At least for the first year or two. Looking forward to comparing notes on the Ibrance lifestyle after 4-5 years on this stuff, don't ya think ;-)
>Z<
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There is a discussion of the infections on ibrance on Inspire right now that might be helpful to read. (If you read the following in a few days or months, you will need to go back to the April 6th entries to find the discussion). The main point is that the kind of neutropenia you get on chemo (the kind that increases the chance of infection and prevents you from fighting them) is different from the neutropenia we get on Ibrance. The Ibrance induced neutropenia has never been associated with an increased rate of infection. Edgerider reads a lot on these topics and has some good info. He has some out of the box suggestions on how to fight infection. Useless to Dee who is on a trial, but possibly helpful to others as the issue comes up all the time.
https://www.inspire.com/groups/advanced-breast-can...
>Z<
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Thanks >Z< I read the first couple of pages but bookmarked it to check out later. Looks interesting. cheers, dee
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Z, my onc told me that about the infections also. She said they have not seen an increase in people actually getting sick with an infection despite low blood counts.
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Hi Sadiesservant,
I'm applying for patient assistance from Pfizer as well, since my COBRA insurance ends as of May 1. I just need help until late August, when I get on Medicare.
Best wishes from Texas,
Katty
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Just got a call from the cancer center and my tumor marker hasgone down 25 points in two weeks so Ibrance must be working. I think the low platelets and hemoglobin is from the Ibrance too. Will have blood checked again in Monday.
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Great news, Dianarose....congratulations!!
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Diana - enjoy the good news and your health!
>Z<
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So happy to hear your news Dianna. Its so hard to know how things are going by day/week until the next scan. I was trying to describe to friends recently how I feel and how we can tell how things are going. I related it to being pregnant and wishing there was a way to look inside and see how baby was. Whatever test I took it felt that the next day I couldn't know for sure how they are doing (both boys turned out very healthy and are now 18 and 20) So I suppose scans are what makes me transparent.
I have just returned from a wonderful trip back to my home town of Bristol in England. Whilst I did see family and friends, I avoided the usual round of continual visiting and moving from bed to bed by staying with a very close friend in the center of town near to where we lived before moving to the US. I recreated my walking life accessing cafes, bakeries, delis and the lovely little shops and restaurants that Clifton Village (a Georgian/Victorian district of Bristol) brings. I am getting used to trying to enjoy every day and to plan things that I want to do and not feel stuck on the treadmill of life! Today my DH and I agreed we would get our garden (back yard to in the US) plan sorted and finally refurbish the pool and sort out all those areas that have been neglected in the California dry weather. My engineer DH has always tried to be a practical help. He's getting used to my feelings whenever we plan more than 1-2 years out, and I'm trying to stop that instant feeling of sadness (He's discovered not to mention putting more into our pennons plans!)
Back to Ibrance, I am in the middle of my second month and so far haven't had too many side effects. My blood counts were down at the 14 day initial check - but not enough to stop our travel plans. I am still cautiously watching for those pesky side effects, but feel I am tolerating it well.
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Scwilly- I first thought the chills were from the Ibrance but after getting those two wonderful shots in the butt yesterday I now know it's from that. Had chills Thirty minutes later. MO said the same thing. So fat side effects are minimal other then blood counts. White count was good though
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Dianarose, that's great news to hear. May we all have good news on this treatment. I'm getting scanxiety now, as I have a PET/CT next Wednesday and just praying for good news. I'm in the middle of rd.#16 and as time goes on, I wonder when it will start to fail.
Z, I like your idea of discussing this lifestyle in 4-5 years. Not sure, I'm happy with this lifestyle but I guess it beats a lot of other things. I'm just so tired of being tired and the major muscle pains in my legs. Has anyone found anything that helps that? The turmeric helps the joints but not the calf pain I have.
Have a good day everyone, we finally have some sunshine here so I'm going to try and look on the sunny side of things. 😊
Faith (in the future)
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Dianarose, if you are able, try taking Claritin (Loratadin) 2 days before the Faslodex shots through 2 days after (I use the generic Loratadin). I did that, and at least for me, it dramatically reduced the pain from the shots. Someone on this site recommended that, and several agreed. Though maybe I was just lucky this third time I had the shots, it was very different having taken the Loratadin. Thank goodness for the suggestions made on this site!
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Just hopping on for a minute to wish you Dancers a wonderful week-end. I logged on to my email account this morning and had an unsolicited ad from BURIALINSURANCE.COM! I guess they know this Ibrance is going to keep me going for decades!
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Faith, my calf muscles have gotten very tight as well and that can cause pain. What I find most helpful is doing yoga several times a week and I am always careful to stretch the calves. It is hard for me to describe the stretches in writing but if you are anywhere near me I would be happy to show you. I have taught yoga for many years. Otherwise you might want to check out a stretch class or gentle yoga class in your town, or even Google "calf stretches" on YouTube.
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Dianarose- great news on your counts going down!
Has anyone else find they are having more muscle pain in the back, shoulder or neck area? This started a few months ago. I have been on letrozole and ibrance since 10/15. Getting nervous that it may be the cancer spreading to my bones. It feels like muscle pain but it has come and gone for couple months now. Seeing MO in 2 weeks.
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Hi All,
Well, Pfizer submitted the paperwork to my insurance company so nothing more I can do but wait and see on whether or not they will cover the treatment (or a portion of it - not sure how that works as I actually opted for zero deductible and 100% cost coverage when I renewed my policy last year). It seems there are so many positive stories about Ibrance that I hope I can work something out.
I have been wondering about scans, etc but my oncologist has not suggested anything. He doesn't appear to track tumor markers and there may be issues with scans as the bulk of my disease is in the pleural lining of my right lung. There might be a nodule in my lung but it was unclear as my lung was partially collapsed at the time of the scan. He really wanted to use a reduction in fluid to assess effectiveness of treatment but so far the fluid shows no sign of abating (which is why it was decided that I was not responding to chemo after three rounds of Taxol). I will raise the issue the next time I see him but felt there is no panic given that the Arimidex takes time to kick in and I am not on Ibrance yet.
I know what you mean Scwilly about planning too far out. At the moment I feel a bit caught in the middle in terms of enjoying each day. There are many things I would like to do including planning some trips abroad but it's darn difficult when you have to have your lung drained twice a week! Here's hoping Ibrance is approved for me and I can get rid of this catheter!
Have a good weekend everyone.
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Sadie - Your doctor is not alone in not tracking TM's. It seems 50/50 whether doctors use them. I don't think they mean much unless they have been proven, in a specific individual, to correlate with scans over a period of years. For some people here they are very accurate, for others, meaningless. Basically other processes can produce these antigens, it depends on the individual whether that is happening.
I do track mine, but I don't rely on them. So far they have risen when I was losing tumor mass and then dropped as I stayed stable. And they are only varying by +/- 30% at this point. Some doctors do use them, but only if they go up or down by 2X or 10X. It will take a while to figure out what they mean for me. I am only 15 months into this thing, which is too early to come to any conclusion about what they mean.
It is an interesting conversation to learn your doctors perspective. But if he says they are worthless for you, that is a reasonable response.
>Z<
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Sadie- I have a naphostomy tube and bag that I am hoping to get rid of. I have had it since last August. Let's hope Ibrance does the magic we need
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Hi Singlemom,
Yes I have been experiencing quite a bit of neck, shoulder and back pain. I had an MRI of my spine last June and saw a neurosurgeon who specializes in metastatic tumors of the spine. He gave me a glowing report. Nothing related to the tumors in my spine were causing me the pain. The tumors are all very small and none are anywhere near an area that would cause me pain. He thought my spine looked great and told me to just keep on doing what I'm doing. Swell but I'm still in pain. Granted it is not debilitating pain and usually a couple of advil takes care of it. Now it may just be from sitting at my computer all day. I work full time and spend most of my day at the computer and I don't get any exercise (YES I HEAR YOU Z! I need to get back to excising. I used to be a gym rat for most of my life). But the pain in my neck and shoulders has become increasingly more consistent. I have been reporting it to my MO and she offered to send me for another MRI and also suggested including my neck in my upcoming scans so I'm going to go that route for now. She said as long as I'm not feeling tingling or numbness in my arms, hands, legs or feet it's probably not a compression issue or even related to the mets in my spine but she is willing to have me checked out in any way I want. We can't help but worry about progression in our spines when we have mets there. It's scary stuff. As for the muscle pain being related to the Ibrance and Letrozole - I don't think they are the culprit. I do get occasional joint pain in both of my shoulders which I do attribute to the letrozole but not the muscle pains.
Ok so after re-reading that I don't think I helped you at all Singlemom.... sorry.
Cathy
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Oh Geez singlemom I just realized you don't even have bone mets. sorry for that long winded post. I bounce back and forth between the Ibrance thread and Bone Mets thread and lot of the same people are on both so I made a poor assumption. sorry.
Cathy
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Grannex, on the Y90, there is some feared interaction of xeloda and any radiation treatment. They worry xeloda is a radiosensitizer. They typically won't do Y90 on anyone who has used xeloda, nor do they recommend you use xeloda afterwards. Not saying that makes any sense, as the drug should clear after some time. Just relating something I read when I was looking into Y90 for my wife.
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Hello Dianrose. My platelets continued to fall on the 4th week (Ibrance off week) for the first 3 months of Ibrance125/Letrozole. I never felt bad..just easy bruising. My MO reduced me to 100..so we will see. WBC and RBC, although low, were fine. You have this! Congrats on reduced TMs.
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Sandi-they are at 118 which isn't too bad considering in November they were 34. Hemoglobin was not as bad as I thought. They were 11.2 and white are 3.2. A nurse practitioner told me folic acid can help with platelets so I started taking them again. Hopefully I can stay on the 125 as it seems to be working.
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Hi Cathy, no reason to apologize! I appreciate your feedback. I am going to see what my MO has to say and see if she feels an MRI is needed at this point. As you said, the pain is not severe but it has been a couple of months now. It really feels muscular in nature but i dont want to miss anything more serious. I am glad your mri did not show any concerns and I hope it is just a muscle thing for you as well!
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Cathy - I am going to say it. You need to exercise. But you know that.
What I really want to say is that super fit people who have exercised a lot in the past have a hard time seeing the value of a 20 minute walk. The difference between doing nothing and doing a 20 minute walk is huge. Many studies show that level of exercise provides 80% of the benefits. Everything else is gravy.
This is great news because, given what we all having going on, a short walk is often the reasonable choice.
>Z<
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Lucky for me I have no choice on the walking. Sadie requires her 'walkies'. As a result, I get at least 90 minutes a day, rain or shine, fluid on the lung or not!
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