Ibrance (Palbociclib)
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Thank you Z and Shetland! I am going to discuss these options with my onc this week.
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I started taking Ibrance and Femara one year ago. The only side effect I have is fatigue, but that could also be from the pain meds I take. My first PET scan after taking these two drugs showed marked shrinking of my 5 tumors, as did the second PET scan. The third PET scan showed a plateau; no shrinking or growth, which my doctor says is good. Next PET scan is next month.
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Carol.... what do they mean by an uptake? Were the mets not seen before on the skull? Or were they not communicated to you? I know this is so frustrating. I believe this will work for you though! I do believe!!!!!
dcjoslin.... where are your mets? How much shrinkage did you see? Were the tumors large to begin with? Or small?
Sending healing vibes to all tonight!
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ekoza-1969- To answer your question regarding the cost of Ibrance, it is about $10,000.00 per month. If your are uninsured/under-insured, you should qualify for Pfizer's Patient Assistance Program. Do not lose hope, there is help if your MO prescribes the Ibrance for you.
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Hi everyone. I just wanted to chime in on some of the recent topics. I switched my Ibrance dose timing to after dinner. I remembered reading on this thread a while back that it helps absorption with a higher calorie meal, and I'm not much of a breakfast eater. I love breakfast foods, just not first thing in the morning. I now sleep better at night and don't seem to have the midday crash I used to have when I took it in the morning, often requiring a nap in the middle of the afternoon. I was able to paddle a canoe with my DH for over an hour last weekend, and have managed to return to the gym every other day. My energy levels are great and I just completed my 4th cycle. Blood counts have been lower, but stable. I have been switched to Faslodex too, but I still secretly take my letrozole until I have completed my loading doses in 2 weeks.
Carol- I was also told on my last scan there was increased uptake in my skull, but my MO doesn't include my head on the CT order. I want that changed for my next scans in September. I don't have any idea what's going on there. He didn't seem concerned at all. He sits with the radiologist who interprets the scans to see for himself the bone scan and CT for comparison.
Well, I need to sit with my compression pump for my arm before bed. Lymphedema seems like a little issue compared to a spine and hips full of mets right now, but the arm swelling is annoying today.
Wishing a pain-free restful night of sleep for everyone.
Debie
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Carol - I think my knees would have collapsed when I got that news about skull? mets. After all this time, could this please end?
Sometimes, I feel like there had to be an end to the bad news but it just does not come. I have a lump. It's cancer. Actually there are several lumps. And it's in my lymph nodes, and its in my sternum. No, its not in my sternum but it's in my liver. The liver mets are small. Well, they are small, but there are lots of them. And oh, maybe I do have a met to my sternum. And also, my throid is hypermetabolic, which is maybe a second primary cancer. Maybe. We won't know unless we remove my thyroid. AHHHHHHHHH. Could this please end? Apparently not. I am pretty numb at this point, but your post shook me up.
In any case, there is a solution coming either in Ibrance or in some other treatment. Wish I knew what it was, but no one can say. You have to keep going to find it ...
dcjoslin56 - awesome. can you complete/update your diagnosis and treatment summary in your profile? it helps a lot to understand the context for your posts. looking forward to hearing about your next pet scan.
Go DebK227. Nice workout routine.
>Z<
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Oh Z.... I hear you. I too want the bad news to end. I believe Ibrance is the answer for many of us. I also know that Eli Lilly and Novartis are both coming out with something similar to ibrance. Both drugs have shown promise (much like ibrance did a couple of years ago). We have options now and we will have more options in the coming years. My oncologist says we know SO much and every year we know more. We can do this.
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Here is the same post I did in Bone Thread for anyone that isn't following there--
Z,
I was diagnosed finally in October/2015 after my local MO dropped the ball on me. As a matter of fact, I had a bone scan a year ago this month that showed abnormal uptake in ribs, femur, and pubic bone. That was done because of a routine MRI for degenerate disease (had sciatica) and was getting an epidural steroid shot- MRI picked up weighted signals and radiologist recommended bone scan because of my history. Well, after bone scan results they went after my breast and tore that apart looking for the BC. NONE. From there they took X-rays of my hips and legs.. and found a good size lytic lesion in my lilac. I have no clue other than the local MO I was seeing never in her 25 years of practice saw BC come back after 18 years so she dragged her feet. I went from having an MRI in June till October before they finally biopsied the bone. Ready for this ? It took over 3 weeks for results- At this point, I couldn't walk as the met in my left femur was almost through the cortisol bone. That pain started in September. I fell through the cracks of the system -
With that being said my daughter's are from North Shore Boston and insisted I get a second opinion at Dana Farber. My bone biopsy results were triple neg.. but my original bc was not. Unless there was a new BC primary ( there was not) Dana felt this still had to be positive and the rest is history for now-
Dana Farber did their own bone scan in Feb that showed abnormal uptake in the cranial. I never had cranial done as part of the bone scan a year ago, and to be honest I don't know how many are getting bone scans that include your head. When you compared my bone scan from local MO in July/2015 to Dana Farber bone scan 2/2016 there was progression but because I went without treatment from June-Oct. Every scan since I have stable and healing.
I was told and also have dissected my reports and flipped out when I saw that abnormal uptake in cranial in Feb. MO (who is out on maternity leave now) love love her.. said to me that she reviewed this with radiologist and it was nothing to worry about. So, I guess noting to worry about and yes you have breast cancer in your skull mean the same thing, which is don't worry about it.
If I am concerned or worried at all, it is that the Ibrance at the higher doses were effective. I wish I could have stayed there. I was able to do 125 for 5 rounds. Then started having problems and it progressed to where I am now. 2 on 2 off at lowest dose. Scans again at the end of the summer will tell a better tale. I asked MO yesterday about the two sister drugs. They are still in trial and they think of nothing next until there is progression that they can biopsy and weigh out.
Lesson for today: Let Dana Farber worry about it, the twitch in my eye resolved on its own so it probably is absolutely nothing to do with skull.
Carol
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Loves Maltese - You have Dana Farber on your side, so your in good shape. I expect your next scans will be good.
However, I don't see that DF has a plan for you if you can't stay on Ibrance. This could happen without progression. Can you ask your team for a plan? Mentally it should help. Compassionate use takes some time to obtain if you want to try abemaciclib. Seems to me that you have a strong case for getting it. Make DF work ever harder for you ...
eelder - I do think we are the generation that will make it for all the reason you say. Just wish I knew how, but that's the interesting part ... as long as we can keep our spirits up and our bodies healthy.
keep going ladies ... off to my yoga and lymphatic drainage. ah the BC lifestyle.
>Z<
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Oh Z I hear you.... if only we knew what the journey looked like! That definitely contributes to my anxiety
Sigh. But my heart tells me we have many more options on the way. The uncertainty is just so hard.0 -
Z, Here is Dana's plan....
The 2 on 2 off was decided by the MO that heads up the Ibrance trial not the MO that called me yesterday. She explained that before she even told me what the plan was. She went to the expert in Ibrance . My numbers weren't the greatest for starting a cycle . I think neut- were 1.26 and white count was 2.6- I asked what if I can't be on it cause of my counts? They won't even go down that road because we are not there yet. she wouldn't even discuss the sister drugs I asked about, she said they are in clinical trial and I have not failed anything yet. So I take the free pass card with me for now.
I have asked what would be next if there is progression?? I was told they would first biopsy progression. Then after the findings it is brought before their tumor board for a decision. And that's Dana Farber... The MO I have is a perfect match for me- she comes back sometime in late Sept-
I went for my walk today and my phone rings and it's a social worker from Dana that wanted to know how I was doing. So, after I hung with absolute anxiety yesterday, MO had someone follow up with me. I couldn't ask for more. This is not my problem anymore it is their problem on what drugs they have to pick. In the interim, I am going to beat this MF BC and live to die of old age.
Carol
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Good for you Carol!!!! Sending tons of support! You got this!!
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Oh Lovesmaltes, I am so hoping that is not the case. I had abnormal uptake in my thyroid and it turned out to be nothing. I hope that is the case with you too. Maybe just some inflammation from meds or something? Sending good thoughts your way....I will be starting 75 mg next week as well and hope the SE's I get go away as it seems to work on the mets.
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Carol! You've got this! You ABSOLUTELY do!!! As horrible as our situations are, we DO have a cancer that they know lots about and they DO have options for us.... and MANY more coming soon! Stay strong Carol! You've got wonderful medical care. They will figure it out.
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Carol. I just have to echo what others here are saying. You can do this and let the MO worry about any next step. We are going to beat this thing. Like you, mine came back after many, many years, 25 to be exact. Nobody said to me they hadn't heard of it. I'm kinda mad that my PCP or cardiologist didn't order a chest X-ray when I complained of shortness of breath and coughing. It took a visit to a new allergist to order the X-Ray that found the tumor in my lung. My MO did say that the cancer is slow growing because it took so long to come back so I'm guessing yours is also.
What I'm having a hard time with now is that this is my week off the Ibrance and I still feel lousy. I had my blood work today after 7 days off and my WBC were actually a little lower than last month when I was at day 20 of Ibrance. Why don't we feel better in the week off? I shouldn't complain because my MO's comment on lab report said labs were good. I didn't see him this month. He said I was doing good so I could wait till August to see him. No scan until Sept. I guess that's a good thing, no news is good news, right.
Of course, now I'm concerned that when we go on a family beach vacation in August and it's my week off, I'm still going to feel lousy. I thought it would be good timing. So much for making plans with this thing hanging around. I just have to think positive and exercise.
Faith ( in the future )
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Carol - got it. you have it covered! kick back and have a great summer.
Faith - I had a horrible week off Ibrance between cycle 5 and 6. It was mentally difficulty because I was expecting to get a break. however the first week of cycle 6 was good. second is fine so far.
i tried taking loratadine (claritin) daily this cycle after reading that it helps with fatigue and ibrance on another channel. i am cleared to take it because i took it during cycles 2 and 3 for allergies. and i felt better those cycles. we'll see how this cycle goes.
>Z<
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Faith, yes it is slow growing.. so my plan is that it took 18 years to come back, I will make it 18 years again before it goes away. As for Ibrance, white cells are not as important as your neutrophils - They have to be above 1000 (1.0) to finish. So on day 13 mine were .86 so I had to stop. That was on a Monday, they wanted me to retest on Friday and on Friday they were .60! So it does continue to work on days off as my counts went even lower. It took me 2 weeks to recover back to what they think I can get 2 weeks out of it again. I started Ibrance in Oct/2015 and did great for awhile. One thing MO said to me.. for what its worth, is that the drug is designed to lower your counts that is how it works and targets... she said I accomplish it quicker in two weeks instead of 3 week. I love to imagine that my cancer cells are weak and the minute Ibrance circulates they scatter all over and can't attach to anything. I like to make things up!
On Ibrance I have really achy bones.. burning feeling in some areas. It's the combo of the two meds with me because on second week off I had none of that pain. Took one pill today and can feel it already. I call it happy killing pain-
Hope you feel better... my fatigue isn't bad as much as the burning neuropathy I get from it.
Carol
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Z, I'm taking Claritin too! Just started!
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Hi everyone i read your posts and pray for your se's to subside. Ivebeen lucky I have no pain only fatigue and some nausea. My off week does not. Improve. My tumor markers are at normal range and on the 20th I'll have a PET scan to confirm its working. I haven't had a PET scan in two years so it'll be interesting to spee what does it show. Fingers crossed.
Aurora
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Love to hear how the Claritin works for you guys!
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Carol, looks like my neutrophils are good. Today, they were 1.96 but last month when I was still on the Ibrance they were up to 2.56 and I was feeling pretty good. I sure would like to know what's different this month. I'm also more nauseous this month. I wonder how much stress plays with these numbers. For some unknown reason, I've been feeling very stressed lately even though I'm trying to walk outside more. I think I'm going to give hypnotism a try. I like the way you make things up, like the cancer cells scattering. Good image!
Z, I guess misery loves company but it's good to know I'm not the only one feeling bad in my off week. I remember reading here about the Claritin and I just bought some to try this cycle. I do have bad allergies and use Flonase everyday. I think I might have to give that up if I use the Claritin, I'm going to check the interactions on google and see what I can find. I'm also starting to take the letrozole later in the evening because I read some where here, that it seemed to cause less side effects like joint pain. I've been slowly moving the time back. I think I've noticed a difference since I've stopped taking it at the same time as the Ibrance which the nurse said was fine to do.
Aurora, thanks for the prayers, we all need them and I also pray for all of us here and that someday, they find a permanent cure for this nasty disease. I have three daughters and six granddaughters i worry about even though I don't have the BRCA genes, it's still a worry.
Faith (in the future)
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I've been on Ibrance and Femara for about 5 months and tumor markers are going down significantly. I am also much better physically and have little pain. Prior to this I was having such bad pain in my back and legs that I could hardly walk. My side effects are mouth sores every month, no matter what I do. I also get a shot of Xgevia each month as long as my Calcium levels are in the normal range. I started taking Wellbutrin last month to help with the depression and crying. I work everyday which helps so much. I have some hair thinning too and it seems as if my hair is not growing like it used to--which bums me out too. I'm thankful for feeling better and my overall improvement. I am also glad to find these support forums which helps me feel like I'm not alone.
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I'm nearing the end of my 3rd cycle of ibrance and letrozole. This cycle I noticed my hair thinning considerably. Question: does the thinning eventually slow down? Or will it continue until I have no hair? People say they don't notice, and I believe them. But I definitely notice it and am wondering if this will ever let up. Obviously my LIFE is more important than hair. But if I will be on this treatment potentially for years (fingers crossed), I'm wondering if there's anything I can do to preserve my hair.
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Welcome to Tribe Ibrance, Brody2103, where we complain about our mouth sores while thanking the heavens for kinase inhibitors.
It sounds like you have bone mets. I think you can thank the Xgeva for the improvement. Recent research has show that it both prevents and heals bone mets. Try the bone mets thread to get more info about Xgeva and how it works and how to manage bone pain. Those ladies are on top of these things.
Good job taking care of the depression!
If you fill out the diagnosis and treatment details in your profile AND make them public, we can have better sense of where you are coming from.
>Z<
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Hi brody2013, welcome to Breastcancer.org! You're right, you're not alone in this wonderful community. We're sorry that you have to be here, we're so glad you've found us!
If it helps here is some information on What to do if you have a sore mouth from our main site. Please keep us posted on how your doing, and feel free to private message if you need something from us.
Hugs,
The Mods
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Hi Brody- Just want to tell you that it is awesome that you have had such a great response from Ibrance!! I have not had any mouth sores so I have no advice but there are many topics here in BCO that suggest different rinses.
Carol
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Hi Dee, welcome to the world of Ibrance/Let! I am in a trial too .. it's called "The Carol Trial" (neurotic trial)
This is what I have learned after being on Ibrance since Oct. Every single person reacts different with one thing in common for sure and that is your white blood cells and neutrophils drop because that is how the drug is designed to work. I do well with red cells and platelets-
"The Carol Trial" is based on being neurotic and my symptoms that are the hardest for me to deal with is neuropathy. I was off of Ibrance for 15 days and what I found out was that after day 11 every single symptom I had while on Ibrance went away. Which is.. burning pain where my mets are and sometimes other places too. I also get very tender scalp - that too went away, but Ibrance still works on week off. I am a morning pill taker-- and it really shows up around 6pm- I wanted to share that when I was first diagnosed with bone mets I was shocked as I had no pain, but after 3 months of no treatment I couldn't walk. The pain from Ibrance that I get is not the pain I had when I couldn't walk- I have not had mouth sores, I get tired but I walk everyday about 1-2 miles (although I didn't walk today) and exercise helps the lack of estrogen. The first couple of months was a piece of cake- I also have hair thinning..most do.
Have a great week!
Hugs, Carol
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thanks for your experience Carol. I'm hoping for not too many SE's, fingers crossed. cheers, de
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Hi, just found this thread. My question is if Ibrance is shrinking tumors is is actually killing the cancer? I have something on the outside of my ureter that is collapsing it and restricting urine flow. MO thinks it is Mets and suggested Ibrance. Just doing a little research first. The info everyone is providing is giving me hope.
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