Ibrance (Palbociclib)
Comments
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Jobur: my Fas is not really the first line tx, but prior Arimedex and Aromasin were discontinued not by reason of progression.0
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Hi all,
Had my first blood check today after 2 weeks on the Ibrance and Femara combo and WBC and ANC are low but not low enough to make any change at this point. I'm so happy because so far I am doing very well on this treatment.
Romansma- you are very welcome. And thank You for all the info you have given from your experiences. Helped me tremendously.
Good Luck everyone. Have a good weekend.
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Great news Hummingbird! I wish you continued success on Ibrance
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Has anyone else experienced their scalp itching? It is driving me crazy. I am hoping it isn't an indicator of hair loss since that's what happened when I had chemo years ago. Thanks.
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Hi everyone,
Hope you enjoying these nice summer days.
Hope, glad to hear you are feeling more energy and have decided on a new treatment - I am praying that it works for you, Good Luck!
Sandilee, Good luck to you also - praying that you do well on Xeloda.
I had my 2nd opinion on what to do next, and the onc said it is reasonable to try another round of Ibrance since it is possible that my progression occurred during the 6 weeks I was off treatments and waiting for Ibrance to be approved. I asked whether this was possible since my tumor markers were decreasing on Ibrance, but the scans showed progression in the bones, some fluid around the lungs, and new small liver spots, and they consider the scans to be much more reliable than tumor markers. Both docs agreed that I can do one more cycle of the Ibrance/letrozole and then do more scans at the end of Aug to be sure the Ibrance is not working before moving on to the next treatment. I wanted to be sure the Ibrance is not working before moving on, since the Ibrance combo has been very tolerable for me - I have been on the 125 mg for 5 cycles, so this will be my 6th, and I have not had any side effects except exhaustion and low blood counts (so far they have not stopped me from treatment, just once when there were a couple of days' delay). No hair loss is also a very good thing. So on to cycle # 6, then more scans so that I will be sure it is time to move on.
As far as the next treatment after Ibrance, I had been hoping it would be Ibrance/faslodex, but it seems that unfortunately the hormonal treatments probably aren't working for me (scans at end of Aug will confirm) So my onc has recommended I go on taxol again (was on it with adriamycin/cytosin back in 2008), and the other onc has said Xeloda is another option (probably spelled those wrong, too tired to look up the spelling). I don't like the idea of losing my hair again (taxol), but at least I know the side effects - I get stressed about unknown side effects (Xeloda). Not sure if I even want to do chemo again since QOL is very important to me.
This onc and my onc both mentioned that there are some trials going on at Mass General and Dana Farber for those of you who have PI3 mutations (they use PI3 Kinese inhibitors to target these mutations). However, I don't have that genetic marker, so I doubt I'd benefit from those, but some of you might. She also mentioned there have been some great results for ER- people who have the AKT marker (she mentioned an AKT inhibitor trial with chemo - Immu-132?) but although I have the AKT marker, I am ER+ not negative, so both she and my onc said that they would recommend Taxol or Xeloda for me (ugh). I also asked her about palliative care, and she said it is not just for those who have decided to forgo further treatment - It can be used along with chemo and other treatments, and it has been shown that people who choose to start it early have a longer and better outcome, so I am setting up an appointment after my next onc appointment to find out more about palliative care, even though I don't yet have much pain yet.
Good luck to those starting out on Ibrance, hoping everyone has great results!
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3holly, very interesting talks you have had with the two oncologists. Lots of information to digest there. Thank you for sharing.
hopeful, yes to itching/tingly scalp and I had the same thought about hair. Nope. Haven't lost any head hair, though have had some thinning of eyebrows, ear and nose hairs.
I am on my "off" week. Will have my blood drawn tomorrow to see how my body is responding. Take it from there.
*susan*
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Hopeful, no scalp itching or hair loss. Holly how did you learn of all your mutations? I know nothing about those. Some info please if you wouldn't mind. I. Have the opposite issue of you good scans, rising markers. My onc is truly perplexed and doesn't know what to make of it. He went over the scans with the radiologist very carefully.
Well, have a good day all.....Myra.
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Myra,
I had a genetic test done at Dana Farber, and these types of genetic tests are offered at many hospitals (very big one being done at Sloan Kittering, I've heard). It was free of charge (paid for by the drug company, I think), and it an "oncopanel" genetic test using my original tumor sample from back in 2008, so I didn't have to get a biopsy. Although my cancer is not genetic, the doctor suggested I have the study done since genes can predict how the cancer might mutate to avoid treatment (and therefore they thought the test might help me find a more targeted treatment). Although I was not allowed to have a copy of the test (I asked for it at the last appointment, but they don't give it out), the onc said I have AKT and CDK mutations (he thought Ibrance might help me since Ibrance actually is supposed to target one of those 2 mutations - CDK I think, and there are other trials targeting AKT).
Doctors were puzzled that there was progression since my TM's were decreasing - strange also that your TM's were doing the opposite - increasing while you had good scans (apparently TM's are very unreliable, but I am doing scans again end of August to be sure the Ibrance isn't working before moving on).
I hope you and everyone continue to have good results on Ibrance. Good Luck!
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Hope good luck with your new drug Xtandi. I have been asking my onc about the Androgen blocking drugs since I know they are still in trial. But they seem to hold so much promise. Did you have to get another bone biopsy? So happy for you and hoping that this is the one that gives you a very long run with minimal side effects.
Holly I had both Xeloda and Abraxane (which is a newer form of Taxol). Other than the hair loss on Abraxane it was really not difficult. The Xeloda was difficult for me in the beginning withGI side effects,but after about a month, it became very tolerable. Very little fatigue You do have to make sure that you watch for the hand/foot symdrome. My onc cut the dose to one week on and one week off when that became an issue and things improved greatly. Overall not that difficult a drug. But really hoping that the Ibrance will kick in. Very strange that you TMs went down with the progression.
Sandilee good luck to you on Xeloda. For some women it works for a very long time.0 -
Thanks Myra and Ibrancers,,
I took my first dose this morning (1500) and will take the second this evening. So far so good. No nausea. I know the hand/foot thing comes later, so I'll be on the lookout for that. I just hope the damn pills work.
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So much going on on this thread! Wishing all of you on new pills the best of luck. I'd never heard of using Androgen blockers before your thread, Hope, but sounds interesting. And my onc said Xeloda is probably the next step if Ibrance/Letrozole fails me, so I'm interested in how that's going, too.
Interesting about the new trials and their targets. I especially like that there are some promising things on the horizon. I keep telling myself I don't need to cure cancer, I just need to keep going long enough for there to still be options. I got a brochure in the mail from Pfizer yesterday that used the word "pause" as in "Ibrance can pause your cancer"--I hadn't heard that before but I think it's a good way to describe things.
I got my mid cycle blood tests for the 75mg Ibrance yesterday and for the first time ever while still taking the pills, my neutrophils are *up*! They were 1080 when I finally was able to start the cycle and now they're at 1400, so relieved! Now I just need to get some good scans.
Also, I'll ask my onc about the left over pills and let you all know what she says. I think I might be reluctant to take someone's left overs because the quality degrades if they're stored improperly (like over 77 degrees, and the temps here are in the 90's right now), but on the other hand, still probably better than no pills at all. I'll see what she says, though.
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Sandilee hope that the Xeloda does a great job for you and that its not too difficult.
RosesToeses I feel the same way that you do. I am not going to cure this, but I want to be around long enough that there continue to be more options. And there are which is so encouraging.
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Pearlady, thank you for sharing your experience with Xeloda and Taxol, it is very helpful to hear about your experience with these drugs. You are amazingly strong, and I'm sure that better more targeted drugs are coming along soon(so I agree, Roses, that just stopping the progression is the goal till then).
Sandilee, glad you are off to a good start with the Xeloda!
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Have lurked for awhile, I am to start Ibrance and letrozole as soon as insurance approves, feeling a little nervous. Marilyn
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Marilyn, Welcome ! You will learn a lot of great information here! I am just finishing my 4th cycle and feeling well. I have found this treatment very tolerable.
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Regarding unused drugs:
In my oncology office, leftover drugs are accepted and are distributed in charitable clinics.
In my opinion, this drug is so new that I would recommend holding on to the pills for up to six months in case they come up with some other usage or combination. Regarding whether it is a chemo drug or not: my advice is to pierce a pill and shake out some of the powder. Yikes it is a brilliant yellow powder that looks definitely like a chemical. So maybe we are all correct but for me I am grateful to have it in the fight against this terrible disease. P. S. for those on the 100 mg pills but have 125 mg left, it might be worth asking at a compounding pharmacy if they can be recycled with the lower mg. That sounds desperate but there are some ladies who are paying a very high deductible and it seems horrific to discard such valuable resources. Carolyn in Music City
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Hope
Wishing you great success on the new drug!!!!!
Babs
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Thanks to everyone for responding about the itchy scalp. I got my first set of lab results yesterday and so far everything is within normal limits, so hopefully they stay that way.
Prayers for all of you who are having scans or having bad side effects.
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My blood work [which autocorrect keeps trying to make bloodworm] is back. The "essential" numbers are normal, but my red blood cell counts are elevated. Dr. Google indicates that I might be on a strong drug! Surprise! I see my oncologist tomorrow, and will be interested in her opinion. Still waiting for the all important tumor marker. That is the number that will give me some real feedback on how this drug and my tumors are getting along.
This off week I have not gotten the boost of energy that I had last month. I just hit a wall around 7pm, as we are sitting down to dinner. I am used to being able to get about 3 hrs of work done after dinner and that isn't happening these days. I am almost too tired to chew. This type of fatigue, a kind I can't just push through, is new to me, and to be honest, I don't much care for it. I have three huge and complex projects on my desk right now, and not enough energy to do good work on them each day.
I am trying to remember to take a bit of time before starting dinner preparations to sit in the garden, admire the tomato plants and all the herbs, but some days even that feels like too much and/or a waste of time.
My little vent.... *susan*
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Phew. Last month's major jump in the CA27.29 was reversed! Now, I would like to see some more downward motion next month.
*susan*
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All right, Susan!
Tina
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Great news Susan! My CA 27/29 has gone from 203 to 156 to 106 since starting Ibrance in April. Will have them done again next week. My onc is very happy with these numbers
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Susan, that's wonderful, congratuations!
Edited because I was a little dimwitted last night: congratulations to you, too, Lynwood!
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Lynn... so great! I hope to have such success too; one blood draw at a time. *susan*
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Good news for susan and Lynnwood! I'd love to see this drug have some success on this board! You gals go!
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Yeah Susan and Lynwood!!!!! Just what we all want to hear!!!!!
Babs
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HI ladies! I'm joining here as I should start Ibrance in the next few days. I started the Faslodex today. I will add this to my favorites and do some reading on side effects. I'm 38 with 2 young kids, a 3 y/o boy and 7 y/o girl. I still work full time as a social worker.
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Welcome and good luck with Ibrance, CJanet!
Susan and Lynwood, great to hear you got positive news! Susan, I think the garden may help you with the work stress, so don't give up the garden, it's therapeutic!
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Congrats to Susan and Lynnwood. Keep up the good stats. Welcome to this thread Cristina. Read the beginning posts. There is a ton of info on SEs.
Have a wonderful day all...Myra.
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VLT. Dx 11/98 - IDC stage 2b 2.5 cm 0/15 node ER+/ PT+/ HER2-
Surgery - Partial MX -15 nodes resected
Chemo 5months AC- FEC
Radiation -Left upper quadrant 7weeks
DX- 4/12 Advanced metastatic disease to bone
Scans showed 70% coverage of bone including scull & face
Extensive damage to hips, lower spine, lumbar & ilium
Femera- 32 months
Exgeva. -30 months
Faslodex - last 7 months
I was told by my last onc that I didn't meet protocol for Ibrance because I failed on letrozole.
Currently the faslodex is just holding. No improvement. Any help would be greatly appreciated.
My current onc is gen oncology, not a BC specialist. Maybe a big mistake. Close to home. Hard to transport 2.5 hrs to cancer center.
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