Ibrance (Palbociclib)
Comments
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Gimme a month or two, I am trying!! Lol
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Met with a new MO today. Marker numbers and their relativity to current Cancers is her research specialty ... I liked that! So she said I should just put blinders on as my scans are good but markers go up. This time they jumped 30. I also am one of the ones in the group that will do 75mg 2 weeks on and one off. That is therapeutic range that my body can tolerate. I started Ibrance 10/2015 and was able to tolerate 125 for months and have been lowering since. No scans till Sept as I just had them end of May.
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Carol, I'm interested to know how long you were on the 125mg before lowering the dose? Also, was it lowered because of side effects such as fatigue and liver problems or because it was working and you would have a better quality of life on the lower dose? When you talk about being in a group on the maintenance protocol, is that a trial you are in or just a decision your MO and you made?
Faith
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Faith- I started Ibrance in Oct 2015. I completed 5 cycles at 125mg. 100mg 2 cycles with interruption. A complete 75 mg cycle. And now 2 weeks into 75 and had to stop. Blood work again Friday to see when I can start back again. Had to stop because neutro are .86. I feel great so go figure? No sickness. Usual tired but not bad. Carol
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Carol wow that works!! So happy for you! How long does she think it's safe to be on it, it's just great, I wrote to you on the bones thread, I guess scratch that.
Thank you so much for the link you sent, I would love to be part of it when they have it next time, to ask real time questions. I was just a little shocked about his comment that BC does not recur so often and that it's mostly curable, hmmm I don't know where he has been?
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MomAtt. I have his email. Since you saw podcast I want you to write to him with your questions. I will pm you later. I bet he answers. You did not have to be patient at Dana to see podcast or to ask questions. Dr Partridge is the oncologist that heads lots of this up. She sees mostly young women with BC. Carol
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WOW that's great, Carol. Thanks a million.
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Hi! Who is Dr. Partridge? I'd love whatever info you can share. TIA!
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Graciegirl-for what it's worth, I had a 5mm lung lesion the radiologist and MO believed to be mets. After 3 rounds of Ibrance, my 1st real scans since dx in March showed nothing in the lung.
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DebK.... I see you're HER2-, but you're on Herceptin? I thought that was only for HER2+ patients. What is the rationale?
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Z, the first time around with Ibrance and Femara both I got a good response but had to quit due to elevated liver enzymes. Now i am on 100mg dose Ibrance with Arimidex. get another scan in 6 weeks. I'll let you know. I hope it's very good as I bought a new car yesterday! Woo Hoo!
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eelder- my original dx was Her2-. When I was dx with bone mets in March, the IHC of the biopsy showed I moved to Her2 ++, which is inconclusive. They couldn't complete the FISH testing because the specimen was too compromised from the decalcification process histology must do to test the specimen. My DH has been a histology tech for over 25 years and said there was no guarantee a second biopsy wouldn't turn out the same way. Since I completed 3 cycles of ibrance/letrozole and still showed progression on my scans, despite some other improvements, my MO wanted to see if it would respond to the Herceptin. I'm completely ok with the addition, and figure we'll have an answer in 3 months when I repeat my scans. Arimidex and Aromasin failed to keep my 100% ER/PR + bc from returning. I'm the only and youngest patient my MO has seen this happen to, so hewants to be aggressive and so do I.
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I totally get it. I figured your status might have changed to HER2+ hence the switch to Herceptin. I hear wonderful things about Herceptin. I know 3 young BC patients all of whom responded wonderfully to it. I know you will too!
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Debk your situation seem similar to Dani. At first she was dx HER2- then it changed toHer2+++ FISH. Anyway, bcs none of the therapies for HER2+ is doing her any good, doc put her on Ibr/Letr and Herceptin, after not much improvement on Ibr/Letr alone. Now she is onto Liver spots, and some lesions in the skull that grew and will have to be radiated. She is in her early 30's so whatever it is it's not good.
Debk are you at the Univ of PA?
eelder Carol sent a link regarding a doctor in Dana Farber that explained all the different mutations, I will look for the link.
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Carol, I'm sorry the reason you were put on the lower dose was because of your counts being so low. I have heard that the lower dose still seems to work. I was also hoping that this might be a newer protocol that was in trial to see how it worked long term. While I seem to be tolerating the 125 mg so far as blood work and liver enzymes are holding up, there's still SE's like the fatigue and mouth sores and insomnia, etc.
Thanks for answering my question. Faith
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Hi momatt- my MO is with the Univ of Pittsburgh Cancer Institute. I see him at a satellite office near the hospital where my DH worked when I was diagnosed. He was voted, along with my BS whom I love dearly, as one of the top Docs in the area. I'm very lucky.
I hope the new treatments work for Dani. I'm 46, with one 9 y/o daughter. I couldn't imagine having this as young as Dani. Praying for you both daily.
Eelder- I hope I'm positive enough for the Herceptin to make a difference. It was very easy with no noticeable SE's yet. Fingers crossed
Deb
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Hello Ladies, I'm on my 9th week on Ibrance along with Tamoxifen a study that they are doing at John Hopkins. I have fatigue like no other treatment. I was on a study for over a year of Cytoxan and Eribulin in quite high doses that study kept me stable for over a year with no new tumors and the ones in my liver, lungs, stomach, kidneys, ribs, clavicle, hips, iliums medullary canal of femur and femur along with C1-3, T7,T8, T11 & 12, L1 through 4 S1 to the bottom of my tail bone and about 12 lymph glands throughout my body light up like Christmas lights. So having stability was wonderful then in April I had new tumors form and most of all doubled in size so quickly.
So I was switched over to this new study. My hands peeled the first four weeks then stopped and things are fine now. Nausea was so much that I had to make sure I took three different medicines staggered throughout the day to keep things down, now that too has let up. However my bones ache in my feet and lower spine to the point where I can't walk across a room this is from the Tomxifen which brings my arthritis and Ehlers Danlos into full blown flairs.
Now with all that being said here is what is interesting and was wondering if anyone else is having such. My cancer makers went from being around 354 to 3,168. So I had a PET scan last week and I had amazing response to this treatment. Three of the tumors in my lungs shrunk by 6mm, all the rest were stable, but the gastric ligament and two lymph glands going into the stomach aorta is free of any disease. I cried, this caused me so much pain in the past that I could not wear anything across my stomach. I knew there was changes because the pain had no longer exists but to read "no evidence of disease anywhere anytime to me is a miracle. So with that said my cancer markers have gone up again by hundreds of points. Could this be the Ibrance killing off the cancer? I would like any response if anyone else knows anything regarding such.
Thank You, M
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Every thread I peruse seems to have someone who says there HER status changed. When I asked my two differnet Onc's about this they both shake it off saying it is very rare? I hope when we get to the point that nothing is working for me they will recheck or I guess I need to insist they do!
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M.... I am definitely not a doctor, but my oncologist said that sometimes tumor markers can be higher because of dead cancer cells (like you stated). That is why they look at both scans and TM to try to understand exactly what is happening. So, it's totally possible that you have lots of dead cancer cells (yay!) and that's inflating the TM result.
My oncologist also said that while on ibrance tumors can sometimes get bigger before they get smaller which is why she isn't scanning me for 3 months. She said sometimes people get scanned sooner than 3 months, but she prefers not to because of this natural pattern of tumors enlarging before shrinking. This concept might also explain your raised TM.
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Question for you all on ibrance... my tumor is in my right breast. Hasn't been surgically removed yet because I presented as Stage IV. Anyways, since being on ibrance I feel tingling in my right breast periodically throughout the day. It doesn't hurt; it just feels "funny." Anyways, I asked my oncologist and she said the school of thought is this feeling comes from my body ridding itself of dead cancer cells. Wondering if anyone else feels this sensation? And if your doc had a reason for why this happens.
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eelder how about asking for an MRI if you are concerned, or at least ask a gyno onco to ck it, it seems weird what she said, but like you said i am not a doctor.
Aritst, hmm i don't think it's so strange, I think it's quite normal, like you said, if you read here many ladies' have changed status. i am upset that it took so much nagging from Onco to do a biopsy, i think she did not wanna believe, but when there was much progression she should have acted on that alone.
M360 my daughter's #s were also more elevated, they were never crazy to begin with, but, she is not showing such great response so I can't figure out what's what. Too bad, when the #s concur with the scans, it's such a relief and help.
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M- Tumor markers do (sometimes) go up in response to dying cancer cells. Mine doubled in the the first two months on ibrance and have held there. Nothing as spectacular as your increase, but you had a spectacular and critical decrease. Wow. The decrease is amazing. But so is the stability. Not all tumors deconstruct and go away. Some become dormant or necrotic and, in that case, clinically there isn't any difference with being NED. So you just had a totally fabutastic response. And fast. You were certainly over due for good news.
Eelder - I have a funny feeling in the areas of my tumors in my breast and armpit that becomes a burning ache and then goes away and comes back as a funny feeling. It's quite intense sometimes. I got my first scan early due to the pain and it came back showing a strong response to my protocol. So I've decided its my body attacking the tumor and dealing with the consequences.
I originally had multiple tumors in my left breast ranging from 1 cm to 4 cm. They way I see it, that is a major chunk of tissue that my body has to attack and then cart away. And all the plumbing is not working well because lymph nodes in that area are impacted ... one can imagine things getting stopped up and inflamed. This is why I asked for, and got, manual lymphatic drainage - to help the lymph and everything else move in and out and support the healing process. This is not a standard thing to do, but I asked for it and it made enough sense to my onc that she wrote me an order for it. The burning is less and at least mentally I feel like I am dealing with it. I am so glad I am improving but that funny feeling is a constant nagging message - you've got cancer in your breast! Over here!
That kind of pain can be a bad thing, like the tumor growing fast, but in the context of improving scans it's obviously some consequence of the healing process.
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eelder, the tingling or funny feeling you're describing sounds like tumor flare, which can also cause burning pain or aching depending on where it is. It's actually the tumor(s) reacting to the meds. It can be scary when it happens b'cuz it's natural to think things are worsening or progressing. But it's a known phenomenon and a good thing because it means the meds are working.
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Question: Could elevated MCV number be related to taking Ibrance? Mine have been steadily increasing. Ruled out folate and B=12 deficiencies and hypothyroidism. I don't drink alcohol so it can't be due to that. I don't want to have to stop the Ibrance. Thank you for sharing your experiences and knowledge with me!
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eelder - I occasionally feel discomfort/pain in the tumor in my left breast. It is definitely more than a tingling sensation. It's more like waves of shooting pain. I'll feel it for a couple of days and then nothing for weeks or even longer. I felt it when I was on Tamoxifen and I continue to feel it while on Ibrance/letrozole but less often. It used to upset me to the point that I have met with my BS and MO several times to discuss removing it. But it has gotten better and less frequent and the tumor itself is pretty smushy now with just one little rubbery area under the skin. The tumor originally felt hard like a ruler under my skin so this is great improvement. Also - before diagnoses I NEVER felt pain in my breast so the pain has to be from the treatment. I'm in my 6th cycle of Ibrance/letrozole now and stable so I just deal with it when it crops up.
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Oh thank you everyone!!! I feel better hearing from everyone. Sounds like you all are saying pretty much what my oncologist was saying. I choose to *think* it's the ibrance "attacking" the tumor, but those waves of fear swoop in too and you start to worry....
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eelder, Just to add one more response, I too get tingling and sometime little stabbing pains from my right rib cage, then it goes away for weeks. I had this since the very beginning and have had a great scan and a not so great scan...
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I too get a shooting stabbing pain in the area where cancer was in the breast. It could be scar tissue I guess, or maybe there are some cancer cells left over, who knows. Pretty sure the neds are working so I don't worry about it.
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hi ladies. I had a visit with my BS today. She works closely with my MO and wanted to see me after I was diagnosed in March. We have a close relationship and are not far apart in age. She explained to me today that my new ibrance/Faslodex combo might actually cause an aggravation of my tumor cells. I might see a jump in TM's and possibly activity on my next scans because Faslodex, like Tamoxifen, stimulate the cancer before it kills it. I'm trying to mentally prepare for this to occur. I also have continued to take my letrozole until I receive my 3rd pair of Faslodex injections. I'm just afraid to not have a back-up for the ibrance until the full effect of Faslodex takes place. Am I crazy?
Hoping all of you are enjoying some sunshine today! It is just beautiful in SW PA!
Deb
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I spoke with my ONC today regarding the Keytruda Ibrance trial at COH. They are currently enrolling. He doesn't recommend it for me because I have so few Mets and am very stable. He said it's better for someone who has more diffused mets, is stable, but the stability may be more precarious because of the sheer number of them. Perhaps some of you lovely ladies here might want to check that out.
Stefanie
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