Ibrance (Palbociclib)
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I just came from my MO. It was a regular visit after month 15. I had to tell him that on Monday this week, my primary care person dx vaginal yeast and a UTI. He wants me to take a month off of Ibrance. I have a very long and varied history with yeast and UTI's. They have always been very hard for me to shake. He "recommended" the month off because we have a somewhat strained relationship (I'll write about that sometime if you want to read a book) and he never just tells me what to do. I guess the question for you guys is, should I be worried about a month off? I took an extra few weeks off when I went to my son's wedding (another book) and had no adverse outcome. I know I didn't introduce myself properly and just jumped into this thread but you guys are awesome. I knew you wouldn't mind.
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Jaycee, I have had to take a few breaks from Ibrance ranging from 2 weeks to 4 weeks. My recent scans were good, and I still feel great, so I don't think that you need to worry about taking one month off. You will still be taking Femera, and that is a strong medication even by itself, so you will still be receiving treatment during your break. UTI's can be tricky, and you should do what is necessary to get rid of it. If your immune system will be strengthened by taking a break from Ibrance, you should probably take it. My 4 week break was taken when I had surgery because my MO felt that I would be less susceptible to infection and would heal more quickly.
Lynne
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Hello ladies, I had a call from MO just before 5. Because of my left bundle branch block (heart issue). I am no longer eligible to go the clinical trial. So I will be starting imbrance next week. I am covered with my insurance plan for july and august but no coverage for the rest of the yearwith the exception of pfizers 20 percent kick in monthly on each prescription. I will then have to pay the 80 percent for sept octnov and dec at 6000.00 per month. I am in Ontario does anyone from Ontario have any other ideas. The social worker at hospital is still working on it but thus far this is where we are. I am going to try not to worry about it and hopefully the funding will come through. Thank you ladies. I guess after next week I will also be on imb
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Hi ladies. A funny thing happened to me today while I was in the process of receiving my Zometa infusion. The very friendly and helpful nurse informed me I was due for my annual mammogram...what? I explained to her I would be getting a PET scan in August for the cancer. I hope she was new!!! Thought you could all use a laugh (cancer humor)!
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Have heard of a lot of people taking breaks from Ibrance a lot of times. Sometimes it's unpreventable and your body has to have the break. I have never heard of any bad results from it. Usually it's blood work related. I can imagine an infection of any kind would warrant that also. Can't take chances. Hope you kick the infection to the curb soon. ~M~
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Hopeful girl - I am in Ontario and I know that Ibrance is being offered on "compassionate" grounds (free) from the drug company - I am in the GTA and I believe you just have to talk to your doctor - I am not on it yet but was told a couple of months ago if I need it they will get it for me - I don't have any supplemental insurance I wonder if that makes a difference - anyway Good Luck!
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thank u sandy. I spoke directly to Pfizer today and unfortunately the compassionate bridging is not cut off as May 31st 2017. I live in Barrie. I really hope that the EAP Program funding is approved by the end of July. The financial navigator at RVH in Barrie advises she think this is a possibility. I sure hope so. :
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I'm wrapping up my first cycle of Ibrance. Thanks to all of the great stories here, I haven't had any surprises. Some mouth sores in the first 2 weeks - these were handled by Biotene. Increased joint pain - not much to be done with that except keep on with the (recently controversial) Curcumin and Claritin, and suck it up! I can't tell if my hair is affected since I only have 1/4 inch, thanks to the big guns chemo. I seem really dehydrated. Anything less than 1 gal. of water each day results in a headache. No need for Tylenol, though. Just a 12 oz. glass of water does the trick.
Overall, my first cycle went rather well. My only big issue is week #4. Boy, oh boy! You ladies weren't kidding about the fatigue in the off week. I've needed a few midday naps this week. While the naps have been helpful, this doesn't sit well with my employer. I've needed to tap out early more than once this week. Should I expect this fatigue to continue? Will next week be better? Is every cycle like this, or just the first 2 - 3 while my body adjusts?
I do feel that Ibrance is working. The primary tumor is definitely softer and the edges are less defined. I would even say that the tumor is a tiny bit smaller (but that may be hopeful thinking). I met with my MO today, and he feels that we are moving in the right direction. (I'm not always sure what to think of his exams. How can he possibly remember the subtle details about my tumor from one month to the next when he has so many patients to see?)
Last month I wrote about a bit of anxiety over starting Ibrance before my scheduled oophorectomy on July 14th. My MO has planned that I only take 2 weeks of Ibrance for this next cycle, then take 2 weeks off (the week off before and the week after the surgery). Then we can get back on schedule. I like the plan of staying at 125 mg to keep some progress going. I also like hanging on to the leftover 1 week of the expensive drug for future reference. (Again, thanks to you ladies for the occasional scenarios in which you needed just a few extra Ibrance laying around to handle vacations and lost / stolen meds.)
So, cycle 1 is behind me. I hope that some day I can be like so many of you, and celebrate cycle 20 and even cycle 30.
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Hooray for you, Laura! Ibrance is working and that oophorectomy is going to cut off lots of estrogen to make you better faster! I'm looking forward to celebrating those first scan results with you! Don't try to plan the side effects as Ibrance has a mind of her own. Your big fatigue weeks may vary and, if you can make yourself take some walks, that can be better. The great thing is that you're getting the best new medicine for your kind of cancer and if you hang around here enough you'll read of very long time survivors, some who did it with Ibrance and some who did it with old-fashioned chemo. Statistics mean nothing to us! You go, girl!
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Midwest Laura- When I had my BSO two summers ago (after my first 6 weeks of Ibrance) I took only 2 weeks of Ibrance before my surgery, then stayed off 10 days before re-starting a full cycle...I had no problems in terms of effectiveness doing that. I am just finishing cycle 27....Here's to an easy surgery and a great recovery for you, and then you can go full steam ahead on Ibrance for months and months and months to come.
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Micmel and 50sgirl, thanks for the calming words about taking a break. Cycle 16 should have started last night and I didn't take it. It was harder than I thought it would be. I need to take the three in my pill box out so I'm not constantly reminded. My scans have been fine and I'm a little embarrassed to tell you about my CA 27-29. It's never even been out of the normal range. Some of you struggle with so much more than I do but that inspires me.
IntoLight, I've been asked about mammos, too, but the best one was when my primary care person dx the yeast and UTI. She asked if I'd ever tried estrogen. I guess she hadn't looked at my records in a while. My MO is adamant about not using estrogen. My urologist thought I should consider it but that was before the stage IV dx. I don't go near the stuff.
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intoLight - popping in for story kinda like yours? a few months ago I went for a chest X-ray ( cancer related)and the guy hands me theses stickers, and says, "place these over your nipples" I just looked at him and handed them back...said, "I don't have those..."
awkward!
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Here's info on Pfizer's assistance programs:
https://www.ibrance.com/financial-assistance
It looks like if you have commercial insurance,live in the US, and are over 18, you can qualify for a low co-pay automatically (?) or more easily. I called on behalf of my friend's mom, who initially got denied while on Medicare. They have this other program,
Pfizer Oncology Together
I just called, didn't have to wait to talk to someone, and the person was professional and nice. In addition to Pfizer's discounts, they also search for other funding sources. Eligibility is related to household size and income. She said that a patient or advocate can call and do a pre-screen prior to the application process.
FWIW, while I was researching this, my friend's mom got approved for 2 months. A start!
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Thanks, Peggy!!
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Jaycee, if you are ER+ then your tumors feed off of estrogen so of course you don't want any. I thought that was the purpose of Femara! I don't always understand some of the conflicting things I read so I am cautious with my comments.
The good news is the fair was amazing! and I did fine for the 5 hours we were there. I walked some, and rode the scooter some (my DH and I trade off). I am exhausted and a little achy, but not bad. Here is a picture of the Grandbaby which is why we went of course!
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Midwest-Laura, I think that the Ibrance starts out differently for all of us. I had a lot of side effects in the beginning with mouth sores, nausea, and lots of stomach issues. I felt fatigue hit me in weeks 2 & 3 like a blanket would press me down but on the off week I had lots of energy. It took a long time for most of the side effects to ease and I still have fatigue a lot but I don't notice much difference in how I feel on my off week except the freedom of not being tied to the regimen of the pill box. That's a big thing for me, it almost helps me forget for a few moments that I have stage IV cancer. I'm two days into rd. #19 and actually beginning to believe I'll be one of the lucky 50% who go a much longer time to progression. I pray that's true for all of us here.
Faith (in the future).
P.S. I also meant to add that any exercise you can do really helps with fatigue. I know it's hard to imagine even walking a few blocks sometimes but it really does help to "get up off the couch". One of the best things my MO told me was to push myself. I felt like he didn't know what the h--- he was talking about because he didn't know how bad I felt. But, he was right!
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My garden after the rain. The angel is watching over all of us. Sleep wel
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Hopefulgirl, such a beautiful garden to lift all our hearts! Thank you for sharing it. Are those Peonies?
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yes the pink are peonies;light mauve climbing clematis; dark purple behind is a sweet pea variety. Thank you Pat.
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Hopefulgirl, gorgeous garden! What gardening zone are you in? Must not be too far south for your peonies to be so happy, but above VA, as mine are long since blooming! I'm in 7b. My daylilies are going crazy now. Thanks for the uplifting photo...so nice to think of something other than combating illness all of the time!
IntoLight, your baby is GORGEOUS! And I love the composition of the photo, too. Someone should send that in for a competition of some sort.
Back to BC...my onc presented my case this past Wednesday at their "Tumor Conference" (such a grim title for a meeting). They found me of enormous interest because 1) my BC came back after 27 years, and 2) I'm on round 5 of Ibrance/Faslodex with no side effects of note, thank the good Lord. Girls, I feel guilty saying this, but at the moment, I'm Julie-esque. I've been quiet about that. And no pain with extensive bone mets (but no others). They have expressed the opinion that my cancer is very slow growing because of the length of time it took to return and thus that I may have a good and lengthy response. On the other hand, my first scans in mid-May after the first 3 months of treatment showed no progression but no regression, either. Pat, who always makes us feel better, encouraged me by noting that Progression-Free Survival is what we want, but that does make me nervous when I note (with jubilation) that some see healing and RE-gression reasonably early on this treatment. Almost all of my mets are sclerotic with only a few lytic (spinal). I think that I understand that it is harder to visually identify type of changes (progression or healing, as the scans show "increased activity") with sclerotic mets. Do lytic mets fill back in when healing? Or just fail to get larger?
Z, any thoughts?
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JoynerL -- I just finished day 21 of my 5th month on ibrance as well, and like you, I have virtually no side effects. I mostly lurk here and don't post much, but I am on my 3rd trip of the summer and feel/look pretty Juliesque as well. I don't think we need to feel bad about that as most/all on these boards are happy for those that are doing well. I can't answer your other questions, but I always think every day stable or with no progression adds a day or more to my timeline; so I try to be thankful for that.
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Thanks, nbnotes....I'm so glad to hear that you're on a similar track. And excellent advice about the timeline!
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LuluB, a question. Some time ago, you posted something about a blood pressure cuff and drawing blood. I kept a post, by someone else, noting your suggestion, but I cannot find the complete suggestion from you. Would you mind posting or sending to me in a private message? I'm a hard stick, too.
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Joyner,
I can definitely relate to your post. Like you, I was many years out from the original diagnosis (almost16 years) when I had pleural effusion in my right lung. There are no clear indications of other cancer - possibly a couple of sclerotic lesions in my hips but this may be arthritic changes. I have just finished three months of an Aromitase Inhibitor and started round three of Ibrance this morning.
My oncologist and I had a discussion yesterday regarding my status. Other than the fatigue from the Ibrance I feel great. The difficulty is determining how well I am responding to treatment as the cancer in the pleura does not show up in scans. We had hoped to use the volume of fluid in my lung as a measure of response but it seems to be very inconsistent. I have a couple of low drainage days and then it charges back up again. I suspect the problem is that I am quite sensitive to the irritation from the process of draining the lung. I have quite a bit of pain and discomfort when we reach the end of the fluid - cough quite a bit and have a rattle in my lungs for the rest of the day. And, of course, the body's response to irritation is to create fluid. So, it makes it hard to predict if the fluid is from the cancer or the PleurX. I do have a red spot/bump on my left chest which appeared about 4 months ago that has not changed.
I do feel I am responding to the drugs but perhaps with our slower growing cancers the reduction in tumour load will be equally slow. While it is a bit frustrating I do feel fortunate that I am in a situation where it is difficult to detect the cancer. Not really a bad problem to have!
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For me if I am honest, my problem is emotional trauma. Like PTSD, and fear of any problems or progression sends me into a worm hole. Losing my family and leaving them puts me into a dark scary place. Physically I agree I seem to be doing better each month I am on the ibrance.(going on 8 months) But that Julie person looks so care free and easy trotting along side of her dog And DH. I cant even look over at him without my entire heart on the floor in front of me beating in sheer agony and pain. I can't get past the worry of how long i can get out of the medicine and treatments. But then I realize in some ways that is a long ass journey filed with heart ache and worry and scans and fear each and everyday. Although some days are worse than others. I have been lucky so far with very stable scans. And I can tell it's working because I have less and less pain. But I can't seem to get that into my skull. The worst thought in my heart and mind would be MY precious DH, even being near someone else. Ever. It crushes me in a way I've never known. I am not a selfish person, but this one thing is like movie of fear in My mind. Then throw in my children and the possibility of not being a grand mother, and I become helpless in a fetal position. I have talked to someone. And I am sick of hearing that you take one day at a time. I already know all that. It still doesn't take away this awful feeling that lives inside of me everyday. That awful feeling is knowing, for sure that I won't be growing old on that porch with my DH like we planned. How in the hell is that fair? It just plain sucks. Have a good weekend everyone. I enjoy hearing everyone doing well. Please keep it coming. It makes me smile and know. I certainly realize I am not going anywhere tomorrow, it's just so hard. ~M~
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JoynerL - In theory sclerotic lesions are areas where the bone back fills in after a lytic lesion has been eaten out by cancer. Sclerotic lesions are easier to pick up in a scan. In my case, I never presented with lytic lesions ... my lesions presented as sclerotic after I started Ibrance ... probably when they were treated and healing. In this way of thinking about things, doesn't seem they were visible when they were lytic.
Of course this is all great simplification as the reading of scans is very difficult. My "sclerotic" lesions are slightly hyper-metabolic in a PET scan which means ... what? The bone is growing back in causing an increase in metabolic activity? Or I have sclerotic lesions that are actually cancer? This does occur.
I would be cancer free except for one mildly hyper-metabolic (2.9 SUV) sclerotic lesion in my sternum. It actually increased in SUV in my last scan, from 2.5 to 2.9). I don't know what to make of it ... healing, not healing. I have my doubts it is even a met ...
The short answer to your questions is that you can't get all the answers you want from scans and especially with bone mets.
I am considering hyperthermia treatment on this one location to get rid of it. Because it is close to the surface, this "met" is ideal for hyperthermia. But not for a while. I am going to enjoy the summer.
So I guess I am simply there with you, wondering what is going on with my bone met, wondering what it means but in the end just going on with my life. There is not going to be a definitive answer.
The other thing to keep in mind is that Ibrance takes a while to work. 6,9,12,15 months. Bone mets move slowly so they may aslo take a while to respond.
>Z<
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My DH told me last night that he was "Lonely in Advance". That broke my heart.
So come on Ibrance/Letrozole..keep me going for a long time.
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Micmel - I hear so much of how I used to feel in my heart and I am saddened. But I want to tell you, for me, at the 2 year mark I suddenly realized that I am alive and going to be here for a good long time! I felt all those things and more. Please start to realize that this is you too. Sure, we hate the unknown but you can look forward with hope and joy!
At 5years, I expect at least a good 5 more!
I so want to give you a big hug and tell you, I have felt exactly as you, but there is hope for you and there is joy. So tell that Ibrance to work hard to keep you around for a good long time!
SandiBeach57 - go Ibrance/Letrozole...we as natural nurturers find things like this so hard and they as men, who want to fix it, cannot. Difficult for both.
I feel I am not saying this well, but I truly feel both of your pain.
Hugs and prayers everyone
C
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Hopefulgirl, I love your flowers. Makes me long for my gardening days. I can barely bend over long enough to tend patio pots, but I am going to push myself to try....
Sandibeach, you made me cry because your DH expressed amazing love. Hang in there. My mets are resolved now and I am on my 13th cycle, so there is a lot of hope. Share the hope this medicine is offering us with your DH, and plan a cruise. We are amazed each day at what I can still do so we plan together, and enjoy our life together. Cancer has brought us closer and made our love stronger.
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