Ibrance (Palbociclib)
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Roses, sorry to hear Ibrance isn't the right one for you. I know it's so disappointing when we have to move on to another treatment. Hope you have a long success on A/A, with minimal side effects. Good Luck!
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So sorry Roses to hear that Ibrance did not work for you. I pray the next drugis YOURS! Best wishes!
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Hi Sarah
I am about to start my 8th round of Ibrance/Letrozole. In the beginning I was very fatigued-but I was also commuting 3 hrs per day to work. Two months ago I moved closer to my job and what a difference!!! I've had some SEs that come and go-runny nose and achy limbs- but all in all it's been relatively easy. I hope you do well on the combo!!!!
Babs
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Yes, my doctor is a bit of a rainy fellow.
A few months ago he told me to get my POA on file and my will in order, as I only have two years left to live. He said that breast cancer spreads from the breast to the spine to the lungs (all of which have happened to me), and then to the liver, kidneys and brain.
So I freaked out a little when last week's scan showed a cyst on my liver, since that's "the next step".
He also said that as the cancer spread to my pelvis, if I couldn't walk by December, I would never be able to walk again and would be in a wheelchair forever. That was very upsetting also.
I can't decide if my doctor's honesty is refreshing or soul-crushing. For all his Debbie Downer habits, though, he is a good doctor. Certainly the best where I live. If I wanted to change, I'd have to change hospitals as well, which I am reluctant to do at this point.
Thanks for the moral support! After the long verbal disclaimer, I've been stressed for the past two days. My first dose was this morning. I hope all goes well and all will be well with my scans and all. Time will tell.
Enjoy the sunshine, friends!
Sarah
PS: if you have severe neuropathy like I do, consider soaking in magnesium (1/2 c epsom salt in 1 tub of bathwater) for a half hour a day. I'm finding it a relief. Will see over time if it regenerates nerves the way it's supposed to.
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Sarah, we each have to make our own decisions about our docs, but if I were in your situation, I would run to someone else and never look back, unless you want to be dragged into his self fulfilling prophecy. From what you've told us, he's a total downer with no comprehension of the mind-body connection. He's also telling you he doesn't have high expectations for you or himself. You need only to read more here on BCO to find many women outliving by many years those outdated statistics and ridiculous predictions. IMO, shame on him!!!
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Sarah, I am really sorry to think that your onc would be so pessimistic! My onc is very optimistic that people with bone mets can live for a very long time. She says that even though we are not curable, we can "knock it back " for quite awhile. She is very excited about Ibrance and the results they have been seeing
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Sarah,
Ditto to what the others have said. MBC can be controlled. There are plenty of success stories on this board!
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Sarah, I would heed the advice of these last 3 women's comments. They have been through a lot and are very smart, very well informed women. Deanna's faith in the mind body connection has especially impacted how I am trying to navigate through this ordeal and I agree with her philosophy. I do not believe that anyone can say with certainty how things are going to unfold. Give yourself every benefit of hope and belief that you can persevere through these rough times. You may be very surprised.
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Sarah,
Just to add a little personal experience. I was diagnosed 2 years ago. All bone mets (still only bone mets). I could not walk for a few weeks initially. I even went to my first radiation treatments by medical transfer on a gurney. Two years later some mets have reduced and I'm taking yoga. Everyone is different, but please don't give up.
I read a blog by a man with metastatic colorectal cancer which he labels "currently incurable." And he's a cancer researcher. Ibrance is new. New treatments all the time.
Hope
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Sorry Ibrance isn't working for you Roses... I hope your next treatment plan is more successful.
Sarah... Your oncologist seems to be someone who sees the glass half empty instead of half full. I don't think I could tolerate such a pessimistic onc... I hope you aren't taking everything he says to heart. I have mets in the spine and my onc has said nothing to me about it spreading to the lungs or anywhere else because the truth is they really can't predict where it will go or if it will at all. It is an unpredictable disease yes, but it's also a take it one day at a time disease.
On the topic of Side effects: I have had extreme fatigue from Ibrance. No nausea though... my appetite hasn't really changed. Same as everyone else my platelet counts dropped pretty low but not dangerously low. I am pleased with the low number of side effects and hope I will be able to stay on it. Scan day is on Friday... hoping it shows good results.
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Best wishes Chatty, We will be thinking of you! I'm so sorry this one isn't for you Roses. Wishing you the best on the next.
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Roses - Good luck with your new treatment. Hope it gives you a great response.
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Hi friends - Just found some info on Oncolink that may be of interest. Myra - I know you mentioned a few pages back that your tumor markers had been up before down, and you ended up with a good scan. Linked info below indicates that up to 30% of us will still have elevated markers for 30-90 days after a particular treatment--even if the treatment is being effective.
Although tumor markers are not reliable for all of us, if they are for you, you may fall into the 30% mentioned in this info. Both CA 15-3 and CA 27.29 tests have this disclaimer in the last column.
Scroll down to the particular test your onc uses. I know not everyone follows TM's, but if your onc does, you could be part of the 30%. Wishing everyone a good week!
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Hi all,
I was stage IV at diagnosis and recently reached an NED state (ACT, liver ablation, mastectomy). I have started on letrozole and we are considering adding pablociclib. I am curious if there are others have used this combination when in an NED state to prevent recurrence.
Lisa
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Not actually a reply. Stage IV Met bc.
Original diag and aggressive treatments 2004.
Ibrance/palbociclib + Letrozole since April 2015 5-mos now. Changed from Denosumaub + Anastozole + Xgeva
The side effects have become intolerable. I believe they are from the Letrozole--daily dose nearly 3 times the Anastrozole. But, I am not positive. All side effects increasing.
Depression, lethargy, inability to think, extreme weight gain, chronic insomnia, neuropathy big toes and big toe nails, hair loss and brittle/breakage, mood changes. In the past month, my pressure and pulse have gone through the roof. I have aged 10 years on 5 months--from super woman to old lady.
My blood tests re the Ibrance are all great
Again, I believe my problem is the Letrozole.
A deal breaker for me
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Elle,
Has your doctor considered the monthly shot of Faslodex instead of the letrazole? I found Faslodex much easier to tolerate than the AI's.
*susan*
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Ibocken, that's me. NEAD with normal TMs after taxol and remaining so for seven cycles of Ibrance + letrozole so far. It feels like a long time but I guess it isn't really. My onc and I are hopeful. I hinted at dropping the Ibrance (fatigue) but she and dh vetoed that idea quick. Ok I will adapt.
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elle777, welcome to BCO, and so sorry for all you are going through. Have you looked for alternatives?
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Susan
You Rock!
I was on the Faslodex until the change in April.
Along with Xgeva and Anastrozole. They were fantastic. No side effects. 20 lb weight gain, hair loss, depression etc since that change 5 months ago. I asked about changing back to The Faslodex and Anastrozole in an email and was told it could he discussed at my next appointment That appointment, finally, is next Wednesday. It feels like I am swimming upstream. The "depression and lack of sleep" makes driving the 100 miles each way seem futile, and dangerous. Bad mental state.
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I am almost halfway through cycle 4 and my fatigue is serious. I am still working full time as a high school assistant principal and I am having a hard time keeping up and am super anxious for kid germs. I also am noticing that I am very forgetful now which worries me. While Ibrance seems to be working for me, I have very little energy to the things I used to love to do. I honestly could sleep all day I am so tired. Starting to look into options with regards to work.
Monika
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Moissy, thank you so much for thinking of me. This month I finally had a very modest drop in TMs.
Elle777, so sorry for the awful SEs you are experiencing. I had a lot of fatigue, but I am on my 7th cycle and I am having a lot of my energy back. Platelets are good and I have graduated to blood counts once per month. I have found the generic femara by Teva has made a huge difference in SEs. See if your pharmacy will allow you to request that generic and see if it helps I also take a huge amt of supplements:
Astralagus Root, Ashwaganda, Ester Vit C, Vit D, Maitake Drops and just added Pumpkin seed oil which seems to also be helping with energy.
I was able to shop for 3 hrs 3 days in a row. Hope this helps. Myra.
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God Bless, Myra
Actually, I guess I have finished 6 cycles? Brain mush. How did you determine that amazing info re Teva? I stopped the Letrozole a week ago, and despite changing nothing else have lost 6 lbs.
I question that no dosing adjustments are made regardless of "size" (with Letrozole)
You are an amazing lady! My treatments mirror yours, except my journey began in 2004.
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God Bless, Myra
Actually, I guess I have finished 6 cycles? Brain mush. How did you determine that amazing info re Teva? I stopped the Letrozole a week ago, and despite changing nothing else have lost 6 lbs.
I question that no dosing adjustments are made regardless of "size" (with Letrozole)
You are an amazing lady! My treatments mirror yours, except my journey began in 2004.
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Elle, I had heard Teva was the premier generic drug and a friend of mine confirmed it who is a pharmacist. I asked my CVS pharma to order it for me and they did since it is still a generic and I could not believe the difference. He told me that each generic drug has different fillers in them and you may be allergic or susceptible to one or the other.
Good luck, Myra
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Myra
Again, Thank you.
I am dumb founded. My side effects have heen so bad, from day 1, that I discontinued the medication a week ago, and canceled my Wednesday appt at my world famous medical institution.
I am equally as dumb founded that this information would not be primary with my physician. I checked since your last message and learned that my "letrozole" is Sun Pharmaceuticals, filled at the Parmacy on-site at the medical institution.
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Elle I had a similar very bad experience with a generic from Sun Pharmaceuticals with a different drug. I was taking Metformin that was by Sun Pharmaceuticals from India. I also had to discontinue taking it my side effects were so bad. I am still on Metformin, but another brand and I have NO problems.
So yes, I agree with Myra, Teva is one of the best for generic drugs. I learned that for generic drugs the active ingredient has to be within a certain standard (even there a small variation is allowed) but that the inactive ingredients can vary widely from different manufacturers.
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Pearlady
Thank you, also!
The ingredients in Sun Pharm include 3 items not in the Teva. Again, dumb founded.
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Yes Elle it was a learning experience for me also. I have been fortunate enough to take Femara and not a generic. But when I do take generics I try to get the Teva whenever possible.
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Wow, the learning just goes on and on. Who would've thought about the fillers of the drug variating????......You ladies ROCK! Great information for the future.
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Will be having my scans Thursday am. These will determine if the Ibrance/letrozole is working for me or not and if my ca has spread more. I'm on cycle #8 My TMs went up for 6 mos and then finally started going down. Last scans were not definite-ca areas slightly larger and 2 hot spots on my spine which were inconclusive for ca. Also when I was hospitalized last month for cellulitis an MRI showed a mass in my left breast. I am a nervous wreck. These scans will determine so much!!!!! Wish they were over and that I had the results already- bad or good I rather know what I'm dealing with. Sorry for the rant just so anxious!!!
Babs
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