Ibrance (Palbociclib)
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Good news 3Holly, I was delayed with my first round too. Pearlady, my appetite has decreased as well especially at dinner time. Can eat half of what I used to eat then.
Have a good day all. Sitting on a heating pad soon, pulled a muscle in my side yesterday. Ugh, anything else? Myra.
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3Holly I would be interested to hear what your onc says about Neupogen. I always used it when on other chemos and never had any negative side effects. My onc think its okay on Ibrance, but I know that other oncs say no. I tried contacting Pfizer hoping that I could get some clarity there and they referred me to my onc. Very frustrating. So I told my onc's nurse that I would hold off on Neupogen and try to get my white counts up naturally with supplements. And the good news is it sees to be working.
Amber so sorry about your dad. Hope that he continues to do better and that you are taking the time to take care of you. I've never had or heard of mouth sores on Ibrance. There are prescription mouthwashes that you can get.
Going for acupuncture today after work. Not sure its helping my neuropathy, but it certainly helps me to de-stress and sleep better afterwards.Its a beautiful day here in NYC. Going to Tommy Bahama for lunch. Hope every has a great day.
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Has anyone tried or had success with insurance coverage for Ibrance with Faslodex yet? I was prescribed this based on the preliminary research findings published in April but it is not yet FDA approved in this combo. My insurance company denied the request, which is now being appealed. The denial was based on numerous factual errors because the nurse screwed up the application - he had me listed as Stage 2, premenopausal and failed to list my ER+/HER2- status. However, the denial also stated that Ibrance was not approved with Faslodex. When my doctor prescribed it, he said he had already prescribed it for one other woman in combination with Faslodex and her insurance covered it. I am praying this will be covered but do not believe it will due to cost/pre-FDA approval status.
I am in a unique situation as I am taking Aromasin and Faslodex in combination as a first line therapy. (I was dx'd while pregnant with super high hormone levels. Doc didn't believe an AI would be sufficient for me because it would not block the estrogen circulating in my cells, only new conversion of androgens to estrogen. Faslodex was added to address the circulating estrogen in my cells.) My doc initially prescribed me Femara and Faslodex but changed his mind at the last minute. I viewed the drugs as interchangeable so didn't ask why. I wonder if Ibrance would have been approved if I were taking Femara and Faslodex.
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JFL - Have you had progression on the Aromasin/Faslodex combo? If not, why not stay with that and save the Ibrance with Femara for later?
I'm a Faslodex fan, as it kept me stable for 31/2 years, alone. Best part- no side effects. With Ibrance, we are all dealing with low blood counts. It's a much bigger hassle, imo
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Sandilee, I have not had progression and have responded very well and very quickly to Aromasin/Faslodex. If Ibrance is denied, I will end up saving it for later which would not be the end of the world and who knows, may be better. My personal risk tolerance/treatment outlook is to give me the most aggressive care and cut off the cancer at the pass on all fronts and give it no chance to mutate, rather than plug through different treatments. My doctor and I are on the same page with this. I know that many (probably most) view this differently and try to "save" treatments in the arsenal. My husband would prefer that approach as he is concerned about the low WBC counts. Right now, I am back working full time, working out and living a normal life. He doesn't want that to change. However, I am young, with very aggressive and extensive mets and a newborn. I don't mind managing the side effects of targeted treatments as I simply feel fortunate not to be on chemo. Since Ibrance has been shown to double the time to progression, I view it as prolonging my time before chemo is necessary. If I had less liver or bone involvement or less aggressive cancer, I would likely feel differently.
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JFL- I'm glad to hear that Faslodex/Aromasin is working! It's wonderful that you have a doctor you trust and has similar views. I hope whatever treatment you wind up with kicks the beast to the curb.
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Hey all you Ibranceland dwellers! Just got back from MO. Blood counts still low. WBC at 1.4. Lowest so far. ANC at .6 and RBC up just over 10. It appears I'm anemic still, but not necessarily due to iron deficiency. MO seems to think my extensive bone mets are adding to the low counts. Marrow is not working at full capacity. My tumor markers have gone back up higher than when I started Ibrance. Not crazy increase, but up about 18 puts this time. I have a swollen lymph node in my neck that is worrisome, as well as some fullness in my abdomen. Sooooooooo. I think the plan is to stay the course for one more cycle (4) then do some scans and see what we have going on. I'm in no hurry to do much. I'm tired, and I have no need to move on to chemo anytime soon! Feeling a little melancholy. Guess I was hoping to hear my tumor markers were going down and soon I'd be pulling back on pain meds and talking about riding my bike and being normal again. As I type this, I feel the emotion welling in me. Not sure I've experienced a single drug that has truly worked for whatever this beast is in me! I'm not giving up on Ibrance yet, just feeling a little disappointed today. I had such high hopes!
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Hope so sorry that you didn't get the news that we are all looking for. I know how you feel as I feel like I'm living day to day with this and hoping for positive news with the tumor markers, know it can change any day. Hoping that your scans reveal no progression. I note that you are Her2nu negative. Has your onc ever mentioned testing again for Her2nu? I have known two women who were originally tested as negative change to positive after mets. I actually had my mets tested several years ago because my onc wanted to see if Her2nu, ER/PR were all still positive.
My main concern on the Ibrance is that since I've had Femara previously that it may not work as well. My onc told me that if we didn't get the results that we wanted with the Ibrance/Femara combo he wouldn't take me off of Ibrance, but figure out what else to give in combo with Ibrance. I hope that I don't have explore that, but you never know.
I hope that your next Tumor Markers are lower or at least stable.
Also has your
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Hope, so sorry to hear about your counts and exam. Were the counts on your week off? Don't give up yet, try to stay positive! Easier said than done, we are all hoping beyond hope that these meds will work. Sending you as many healing hugs as I can. Myra.
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Oh, crum, Romansma. What a disappointment. But maybe it's just too early to see improvement. The rising markers could be a die-off, and the swollen node could also be acting up because of your white counts. I'm glad your doctor isn't giving up yet! Is he going to have you wait to start the next cycle, or do you start right away? Those of us with marrow mets ( I have plenty) have a harder time getting making blood- it's been that way for me all along, too. I go in Friday for blood work for my first cycle, as this is my week off. I expect my counts are low, if bruising and bloody nose are any indication. But, like you, I can take it if it does the job.
I really hope next month holds better news!
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Sandilee I will drink to that. I hope next month holds better news for all of us.
Yes I'm happy that my counts are good, but that's not the real issue. I'm much more concerned with my Tumor Markers. Mine actually went down initially and then up slightly with the second cycle and then down again at the start of my third cycle. My onc said he is not paying attention to slight swings, so I feel I'm constantly on a roller coaster ride and am now nervous for the results at the beginning of my fourth cycle next week.
Praying for all of us that this drugs works and continues to work.
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Sandilee, thanks for your response.
Romansma, sorry to hear the news. Sending you a hug.
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Thank you for the kindness, everyone. Had myself a little cry and now I'm eating a bowl of corn pops and almond milk. That at should do it! Things could still turn around, I was just hoping to see the beginnings of it. I am on my week off and will start 4th cycle soon. My brain tells me that we should start seeing a trend at this point. I'm trying to be patient. Wondering what your MO would add to the Ibrance if it doesn't work with Femara, Pearl? I know Faslodex has been used in trials successfully, but it's not approved so not sure we could get insurance to cover it. I've also failed Faslodex, though. I've pretty much exhausted everything but IV chemo.
On the question about bio markers, yes, I have seen a few women go Her2 + after progressing. I had a biopsy with my stage IV diagnosis and it did change to Pr negative, but the Her2 was still technically negative. I wanted to send it out for genome testing, but bone biopsies are not great for that. I have suspicion on the Her2 because I've been so refractory on so many of the hormone and targeted treatments. The minute I can get a soft tissue biopsy, I will, and send it off for testing again. Not in a hurry to have it show up in soft tissue, though.
Anyone know of any good immunotherapy trials right now? In California?
Ok, my youngest is getting home from school. Pity party over! Enjoy your afternoon, everyone!
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Aw, Romansma, so sorry it's not showing you good number right now. That stinks. Big time. I wonder if Ibrance is something that can take a while to make a dent? I know some of you have talked about tumor flares, which makes me think maybe, but I guess that's really an oncologist question.
Wishing all of you better numbers (markers, blood counts, etc.) and great numbers.
I'm waiting for my CBC numbers (went in for blood work yesterday). So far I do have the metabolic profile report and all those numbers (gulclose, sodium, etc) are taking a dive but still on the very edge of the normal range, so I'm hopeful for the other numbers, too. I think I've finally ditched the great undending head cold, too, so nothing concrete, but maybe a good sign for those 1st cycle, mid-cycle sort of numbers?
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Hope I recall now when I had my bone biopsy a few years ago that it still came back ER/PR+ but the Her2nu came back negative . My oncologist told me that he was certain I was still positive but that bone Mets were not reliable in testing for Her2nu. I know he's right because I was on Perjeta after that for almost a year and it kept me stable and was still working when I asked to be switched due to the awful GI issues. Of course you don't want to have a soft ttissue biopsy.
I could only get the Ibrance with Femara. My insurance would not approve it any other way. I've not had Faslodex so my oncologist wants to save it but I have a sense it would work better. My oncologist did say that the Ibrance could take a while to work.
Hang in there. It's only your third cycle and 20 points is not very much.
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Hi Pearlady & Romansma, I too am on my 1st round of Ibrance/Femara. I'm praying it works with new bone mets in Feb. Pearlady, I read that you are able to get your WBC counts up on your own and I was wondering what the "secret sauce" to that is. I've been on thiss protocol for just over 2 weeks and I'm starting to get super tired. Would love to know.
My Her2 test has gone back and forth from pos to neg as well. I had a bone biopsy done that confirmed er+ pr- but HEr2 was 2 and they cant do a FISH on bone I guess.
Anyway, nice to be a part of this group...oh one more question. How do you get notifications if someone has replied to a thread you are a part of?
XOXO
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Romansma, one other thought on the HER2 issue. It is pretty common for people who switch to PR - to turn HER2 positive. Apparently, the turn to growth factor pathways such as HER2 shuts down the PR piece.
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Welcome Christine, sorry you have to be here, though it is a group of caring, knowledgeable women. If you look back to around page 16 or 17 you will see a lot of info on supplements and diet for blood counts. Good luck on Ibrance.
You ladies are so up on the markers. When I was dx'd in 1998, markers were just becoming used. I believe at that time I was PR/ER+, HER2+, but I can't be sure since no one still has my records. I should know better, but at that time I was completely shell shocked and was looking at myself as a clinical case. It was not really happening to me.
Well, everyone have a happy, pain free day. Off to learn canasta today, I need something to keep me occupied and mind off this disease. Myra.
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Hi Christine. Sorry you have to be here, but hopefully the Ibrance will do a great drug for you. For the WBCs I take Maitake Mushroom drops. I started with 6 drops twice daily and increased after a week to 6 drops three times daily. Also Astragalus twice a day between meals. The maitake is also said to help with the RBC and Hemoglobin. I also take Chagra mushroom twice a day with meals. Not sure if it directly helps the WBC but it is great for energy and anti-cancer. All of the mushroom supplements are said to be anti-cancer. I just started taking Reishi mushroom also since it is said to be anti-cancer and help with sleeping, which I definitely need.
Myra I have a similar story about no one having my records. When I was retested in 2011 and my Her2nu came back as negative it was a challenge since my onc thought I was still Her2nu+. But their office had lost my original records with my original diagnosis from 1997. When my onc wanted to prescribe Perjeta I had to go to NYU, where I had my surgery, and get my original diagnosis in order to get Perjeta. Not easy as they had lost a lot of their records with hurricane Sandy and had also just discarded records prior to 1997. Luckily after being transferred to many different people I was able to get the original diagnosis. Of course I am now saving copies of everything.
Have a great day everyone.
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Christine forgot to mention that you only need to make this one of your Favorite Topics and then you will receive notice that someone has posted on this board.
Also wanted to mention that my holistic pharmacist just advised me that the black strap molasses that was recommended for helping with the RBCs also helps with the WBC.
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Pearlady, where did you find a holistic pharmacist?! I want one.
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Thanks for sharing your experience with the biopsies and Her2 diagnosises. I've had a hunch for some time now that my original biology may have changed, but since I'm Lobular and mostly bone mets, I haven't been able to get a good biopsy for pathology. I have discussed this with my MO and she thinks it may be the case, as well, but needs proof to be able to give me treatment. Frustrating, but as usual, I must be patient!
Feeling a little better today. My 4th cycle meds arrived today. Oh yeah! Took some Re-Vita this morning that a friend swears by. Hoping I start getting some energy back. Having a hard time sticking with all the separate supplements at different times of day. I'm still taking my digestive enzymes with meals and magnesium at night, but all the rest are sitting in a cabinet. Time to get motivated!
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JFL the holistic pharmacist works with my onc who is an integrative oncologist and believes very strongly in supplments and diet. My onc recommends certain supplements for the cancer specifically, but the pharmacist is so helpful with recommending the proper supplements for things like blood counts, helping my hair to grow and to help the neuropathy.
Romansma I know it is frustrating and you certainly don't want have to have a soft tissue met to biopsy. Bone mets do not usually show Her2nu even if you express it. So a catch 22 situation. My onc has said that once you have Her2nu it doesn't go away, but that it can change from negative to positive with progression.
What is Re-Vita? I go off and on sometimes with the supplements also, but have been on recently. They do help me so much with energy and the blood counts, and I'm hoping that some are also helping with the cancer. I have two vitamin boxes with dividers that I keep on the table. Usually in the morning while having my coffee I fill my lunch and dinner vitamin baggies. Makes it much easier.
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Yes, I was using a pill sorter for my supplements too. Think that last big progression affected me more than I realize. I stopped taking them as regularly as I was. My diet went a bit sideways, and exercise fell off the charts. So! I'm going to make a plan. I'm going to get my husband on board so he holds me accountable. Need to do this! Need to feel better!
On the Re-Vita, it's new to me, so I'm still researching. I just know I need nutritional support for my low energy levels. It was developed by Dr Meltzer in Del Mar, Ca. It's a spirulina algae based liquid that was mainly developed to restore energy levels. Here's a video of Dr. Meltzer
https://m.youtube.com/watch?v=exQubv6h5n0
I will let you all know if I have more energy in the next few weeks. Hopeful!
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Oh, shoot, think I just saw something about multilevel marketing on Re-vita......yikes, hope not. Really not a fan of stuff that is sold that way. I know Meltzer has a clinic in Del Mar and you buy it online. Better learn more about this....
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Hope thank you for the info. Yes I am not a fan of multi-level marketing either. Will read more about it.
I wanted to mention that the Maitake drops come in a very small bottle that you can keep in your handbag. I always carry mine with me, so even if I forget to bring the other supplements, I always have that. I think it's helped me with energy.
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ladies, I thought I was the only one who was going crazy with all the pills and spacing them out. I went from 0 pills to 10/day. I think the vitamins have been helping tremendously. I go for my mid cycle blood work tomorrow and TMS too. I think he does them too much, it has only been 2weeks and too much stress, too many numbers, now that makes me tired and dizzy. I am going to try the pill sorter.
I too have an Integrative MD who works with my onc. The anti-inflammatory diet has helped tremendously also. I don't want to lose weight, but I am because there is very little sugar and no processed food. DH and I are cooking in a lot, which is helping our bottom line and the time we spend together.
Take care all, Myra
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If you don't mind me asking, Myra, what goes into an anti-inflammatory diet? And does it help with AI stiffness and that sort of thing or is it more to keep the cancer itself at bay?
I went to a great lecture by a dietitian from Dana Farber (Stacy Kennedy who was also in "Fat, Sick, and Nearly Dead"), who mentioned that too much dairy causes inflammation, so I've cut back some on that. She was also talking about phytonutrients in a plant-based diet and eating 10 servings of fruits and vegetables a day which also had anti-inflammatory benefits, if I recall correctly--very, very interesting stuff, and it sounds like the science really supports preventing inflammation, at least as part of preventing cancer (the talk was sponsored by Komen for the general public, I felt a bit like a stage iv spy sneaking in to see what the rest of the world talks about when they talk about cancer!).
I don't take any vitamins but the D and Calcium my doctors told me to, but Iended up getting a "4 times a day" pill sorter for the letrazole and Ibrance because it has 28 compartments--it was the easiest way I could think of to keep track of the 21 on/7 off Ibrance schedule (it seemed like something I was just bound to screw up otherwise!). How does everyone else keep track of that without a pill sorter?
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RosesToeses, the Dr Andrew Weil diet is easy to get off the internet. More and more, inflammation and sugar is being promoted as a reason for pain and the growth of cancer cells and then starving them. I have found it very helpful, but in the last 10 days I have been on it, I have pulled 2 muscles. I don't know if this is a coincidence or not. As for keeping track of the Ibrance, my bottle only comes with 21 pills, like the old birth control pills...LOL.
I hope that helps, Myra
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Regarding keeping track of pills, I've used seven-day pill box for the past few years. It's the only way for me to avoid wondering, "Did I take that pill today already, or am I remembering yesterday?" However, I am afraid to store the Ibrance pill in the clear pill sorter because it comes in an opaque bottle; what if it is sensitive to light? I called and asked someone at Pfizer about that, and he said he had to advise me to store it in the original container, and I could talk to my local pharmacist, which sounded sort of ambiguous. So, since I take two D3 pills each day, I just store the Ibrance in its original bottle, and take it with breakfast at the same time as my morning D3. If one D3 pill is gone, it means I remembered the Ibrance. (Then it's letrozole with dinner, and aspirin and D3 with nighttime snack.) I write notes in my planner showing the start of each Ibrance cycle and the week off.
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