Ibrance (Palbociclib)
Comments
-
Wandering...I know you trust your MO and that's great, but I'm with Cure-ious. My MO also doesn't like to go by TM's alone. Maybe another repeat PET or a CT scan in a month or so before starting chemo. It doesn't hurt to ask. We don't know all of your details but I would ask to see how he feels about another scan first. Also, remember, you are not alone. We all know and understand what you're feeling.
BlueGirlRedState...I have noticed a little more dehydration as well (wrinkly fingers, drier skin). I have also noticed my hair seems a little more thin.
PatgMc...wonderful wonderful news!!!
0 -
I used to be on ibrance = it made me tired
0 -
Cross posting!
For anyone who might be interested in immunotherapy, I'm passing along this link to the Cancer Research Institute's virtual patient program on Oct 2-3. I attended a live version of this last year, and it was EXCELLENT. Also, they have a company with which they are affiliated that will match you with immunotherapy trials. This is also extraordinarily useful.
0 -
Candy, I'm glad to hear Dr. Previous has been kicked to the curb! We want doctors who trust their instincts but know our belief in the treatment matters. Why would any oncologist not choose to tweak the available treatments for a disease that vacillates as much as MBC? Shoot, my cancer morphed herself into a whole new thing!
I wonder if doctors who refuse to be creative with treatments would be as stuck if the patient was a loved one or themselves. Ya' think?
Here's to unstuck doctors and patients who go to the trouble of finding them!
Love from PatGMc
0 -
PatgMc - great news on the newest results, many hopes and wishes that you stay on that path.
Judy - fatigue is very real with Ibrance. It was worse for me during the first several cycles. It seems like it has subsided some. Sometimes getting up is still hard (maybe it is just the shorter days?), but it doesn't seem to come on during the day. Try to stay as active as you can, eat healthy, stay hydrated.
0 -
For those of you interested in the immunotherapy program, I think I posted the link to my email account -- here is the direct link for registration:
https://www.cancerresearch.org/virtual-immunothera...
Judy, my Ibrance fatigue comes and goes. Some days it is very bad -- so a bit unpredictable. Other days I have normal energy. But it's a definite side effect for most of us, I think.
0 -
BevJen thanks for the immunotherapy programme link. Although I know that immunotherapy is a way off for us ER+ Her- gals I feel that knowledge ispower. I look forward to joining in even though as I live in the UK it will be a late or early watch for me.
0 -
Chico,
I fully agree about knowledge. It's always useful for us to know what's going on. Here in the US, keytruda, an immunotherapy drug, has now been approved by our FDA for use with all solid tumors that have what's known as a high tumor mutational burden -- and as a single agent. I'm ER/PR+, HER2-, so the times are changing. My MO has it on our "list" for upcoming treatments right now.
0 -
PatGMc congratulations on your good news, it is really joyful for me to read your post, I hope you share more and more good news about yourself. and thanks for sharing those info about taking vacation from ibrance and revisiting it, it is good to know this option is also doable.
0 -
Yes BevJen this is very exciting but I understand that you need all your ‘ducks in a row’ re mutations and that Keytruda is combined with chemo?? Does one need to have had a number of treatment lines do you know and also if there is any clue to the PF or OS benefits for Er+ Her-? So pleased that your MO has this lined up for you. I have a ct scan in September and obviously hope that my extensive bone mets are stable and that nothing else rears it’s ugly head. I had a blood biopsy a couple of years ago and it showed no mutations but I wonder if I should have another one anyway. I have done over 50 cycles on Ibrance, Letrozole & Xgeva and would like to keep with that combo for a bit longer but I’m always prepared for the worst and hoping for the best. Keep safe.0
-
Chico,
The recent FDA approval was for keytruda as a stand alone treatment -- no chemo. This particular approval only required high tumor mutation burden -- I have over 25 mutations, which is very unusual. I believe it's also been approved as a stand alone for micro satellite instability, which I do not have. At about the same time as the approval for high TMB, the FDA approved dosing of keytruda which would provide for an every six week dosage, instead of the usual 3 weeks with some other drugs (and with keytruda previously.) There was reference in the approval that keytruda could be prescribed if other methods had failed, but I don't think there was a particular number. I have not had chemo while I've had MBC -- letrozole for 13 years and now Ibrance/faslodex for a little over a year. My MO presented my info to my center's molecular tumor board and they came up with a series of "what's next" drugs for me, based upon my molecular/genomic profile.
Re the blood biopsy -- I posted on one of these threads (don't remember which one) that I recently sat in on a conference call with a popular MO in Washington DC. Her position was that you should be re-biopsied (tissue or blood) every time there is a progression, but also she was talking about every 6 months or so if you can bc things can go on in the interim. When I consulted with a doc at Northwestern, he also referenced that they use blood biopsies periodically to see what's going on with patients. So I guess how often should be determined by your particular doc(s) and what your insurance will cover.
And congrats on 50 cycles on Ibrance. I hope that I will be able to go that long, and not have to worry about my next treatment at all.
0 -
Wow BevJen that is a lot of mutations. It must make it very difficult to get a handle on the right future treatment but on the other hand it gives you choices the lack of which of course trips up some many people as they career from one treatment to the next. You have confirmed what I was thinking that another blood biopsy is probably the way to go. I was first diagnosed in 2004 with bc and did 5 years of Tamoxifen. I have always said that I won’t do chemo however I have a friend who was at deaths door last Christmas and she is now on X & is feeling and looking fab. She is lobular like you as is another mbc friend of mine and it certainly can be a slow moving beast which is very good. Thank goodness for people like you and Cure-ious who understand and get the science out to our group. Here’s to a cure - after all there has to be magic in believing x0
-
Chico,
When my original F1 tumor biopsy came back, my MO was giddy that I had so many mutations. Not all of them are actionable, of course, and they didn't even list all of them on my original report. But she was giddy bc she said that enabled them to look at a lot of different treatments with respect to my cancer.
Thank goodness for Cure-ious -- she really understands the science. I only understand some of it because I constantly read -- I am a trained attorney, not a scientist. In fact, I think the first (and last) science course I took in college was Physics for non-majors bc all of the guys from the sports teams were in the class! But I do think that my professional training has enabled me to do a lot of research, and I'm happy to share what I've found out in case it helps someone else.
0 -
hi everyone,
Im looking for some advice and encouragement. I have been on ibrance for nearly 5 yrs, letrozole for approximately 4 years then switched to exemestane. A few weeks ago my blood counts would not rebound after a weeks break. Then my tumor marker doubled in one month. I had a bone scan and then an mri. Several new spots showed in the bony areas in my body. Spine, hips, ribs and sternum. One time before i had a few spine mets and they were treated with radiation but now there are many more. Does anyone have ideas or experiences they could share about how their similar situations were handled. Honestly im terrified of being on iv chemo. Good wishes to everyone.
Melissa
0 -
Lissalou,
One thing you can do is to send a message to Best Bird and see if you can get a free download of her book which describes lots of the current treatments for MBC. That will let you be armed with some information that you can discuss with your doctor. Also, if you have had progression, you might want to push for either a tissue biopsy (tough if all you have are bone mets) or a blood biopsy to see if your cancer has morphed at all. But, since you've been on Ibrance for a very long time, your cancer may not have morphed. It's important, though, to find out.
I'm sure other people will chime in, but you may not need to go to IV chemo just yet. There are other treatments available for most of us.
Good luck!
0 -
lissalou- I have not had progression yet, so I cannot advise you on the next option for you-- possible IV chemo. Hopefully someone will chime in to give you the advise you need.
What struck me about your post was your comment "a few weeks ago my blood counts would not rebound after a weeks break". And then you had progression of bone mets. I have been having issues the last 4 months of my counts not rebounding after a week off Ibrance. I am currently on cycle 33. My mets is located in bone and liver. My tumor markers are about the same, but I do not think they are very accurate for me. I have not had scans since I have had this issue with my white counts.
Just wondering about your blood counts. Was it your white cells/ ANC or red cells or platelets or all of them that you had trouble with.
I have wondered if my bone marrow is struggling because maybe the bone mets is getting worse, or traveled to my bone marrow. My MO thinks it is the Ibrance and we are tweeking Ibrance schedule to see if that helps.
Wish you well.
0 -
lissalou - My MO said that although I tested negative for the PIK3CA mutation, there are still several lines of treatment before I would have to start IV chemo. You may find the guide below helpful. It sounds like you have HR+, HER2- cancer. If so, find yourself in the section starting on page 37. Hugs
https://www.nccn.org/patients/guidelines/content/PDF/stage_iv_breast-patient.pdf
0 -
Hi candy-678
Thanks for responding. I will give you the full run down. I have been on ibrance 125mg for nearly 5 years with only one set back of a met on my spine which was treated with radiation. A few weeks later my scans were clear. Then my blood counts wouldnt come back after the usual 2 weeks. So the mo gave me an extra week off and still no improvement. My white and red blood cells were very low. My anc was very low. My hemoglobin and hematocrit were low as well. Platelets were normal. So the mo dropped my dose to 75mg and still my blood counts would not rebound. Then ca 15 3 doubled. Scans found many malignant sites. Just wondering if anyone had any similar situations and what the solution is. Somedays i could honestly give up.
Melissa
0 -
Dr. PatGMc here, Lissalou! Slap that man upside the head and say, "How about some Faslodex with that Ibrance?!" Drop the Aromasin, maybe take a break from Ibrance while you get the Faslodex loading shots, then add back the 75 mg Ibrance. Also I don't see XGeva on your list. I'd insist on that too.
I'm only kidding about the slapping part. I hope you'll consider this before you jump into IV chemo. Pray lots of prayers and you'll know what to do. I'll be here praying for you too.
Love from PatGMc
0 -
Curious ,have you or anyone else seen anything recently about TTC-352? It sounds like it just found safe and effective in a Phase I trial for HR+ MBC that has progressed on hormone treatments? How long does it take after that to become available?
0 -
Hi Elenas,
That's part of the new drugs trying to modulate estrogen receptor activity- there are SERDs that degrade ER (oral equivalents of Faslodex); SERMs that inhibit ER activity and then this new drug which weakly stimulates the ER and in that way competes off the stronger estrogen. The thing with this whole class of drugs is that compounds have been out in trials FOREVER and we have nothing new. Maybe this one will work out, but a whole ream of SERDs have been dropped on or before phase 3 trials, and we don't get any information about what was wrong with them (presumably did not work as well as Faslodex). There are a couple of SERDs in phase 3 and some jumping up that seem now like they might really be good.
An important point is that some of the SERDs and one tamoxifen-like drug, Lasofoxifene, seem to work much better than Faslodex on the ESR1 mutation of the estrogen receptor, which commonly pops up as cancer becomes resistant to I-F or AIs. We really need a drug for this situation, and Lasofoxifene was approved for an expedited review last year by FDA, so hopefully that drug comes out soon. It's worth to check up on the other SERDs because some may be getting close to FDA consideration as well.The new one just finishing phase 1 you would probably only find in clinical trial for the next sevral years.
0 -
SERDs are oral equivalents of Faslodex. Elacestrant was furthest alone, nearly finished enrolling the phase 3 trial when the maker said they would finish the trial (called EMERALD) but will not pursue the drug further- no explanation given. It's like the whole field is jinxed.
But maybe they knew the competition would do better? Now there are three leaders left: RG6171 (Roche) which is just starting phase 3 in combo with CDK inhibitor and being tested for first-line; and SAR43869 (Sanofi) in phase 2, with data expected end of this year, and AZD9833 (Astrazeneca) also in phase 2- it seems these phase two trials are just monotherapy and so phase 3 would probably be in combination with a CDK inhibitor. And that's it, everybody else is just phase 1.
0 -
Sounds like several of us are dealing with progression conversations. My thoughts are with you all and thanks to those who chip in with possible avenues to explore.
Great news for you Pat!
I’m due a scan now but not had an appointment through, so will chase up on Wed at clinic. Assume there’s a backlog. Main issue for me just now is the new drug Rivaroxaban, apart from now bruising at the slightest touch (arnica cream seems to be my new body lotion 🙄), I thought I was doing ok until.....Nightmares!!!😱Horrible, gory, frightening stuff which makes you scared to go to sleep.
Although I’ve always had vivid dreams and the usual recurring scary ones, nothing like this and I’m fairly sure the drug combo is messing with my brain chemistry somehow as it’s too much of a coincidence. I could really do without becoming even more of a basket case......Any thoughts anyone?
0 -
Cureious: Thanks for the information on the new drugs possibly on the horizon.You make so much of this easier to understand for many of us. Just wondering how common a ESR1 mutation is when there is progression in HR+ MBC? When these drugs are in trial, how early can someone access them if there is Expanded Access or Right to Try use.
Karenfizdbo: So sorry about the bad dreams. You need your restful sleep when dealing with MBC,certainly not scary dreams.. i know Melatonin seems to contribute to dreams, but not nightmares for me. I'm keeping all those in mind who have anxiety over progression and treatment changes. There has to be another Judy Perkins someday.
0 -
I asked Dr Google now long it took to get fda approval and it said 6-12 months after a successful phase III. I wish they would streamline that process, it seems to take so long.
0 -
Elenas,
That Asparaginase inhibitor drug will not be available any time soon except through a clinical trial, and I don't know what the rules are for compassionate use- but I did read that its actions overlap with those of metformin, both are acting on the metabolic state of the cancer cell...
0 -
Karen, I'm so sorry you're dealing with upsetting side effects. This info from Mayo Clinic may be helpful as it has a long list of meds that may not be compatible with Rivaroxaban.
My prayers are with you.
Love from PatGMc
https://www.mayoclinic.org/drugs-supplements/rivaroxaban-oral-route/side-effects/drg-20075013?p=1
0 -
Thanks Pat very much appreciate that!
Found that info too.... no mention of the nightmares though, so will chat with my team this week and see what they say... if anything beyond shrugging will post it here. Wish me luck!0 -
Thanks Pat, i guess we will find out what his plan is tomorrow. Im so nervous i cant eat drink or think. I have had mets come up here and there but this time there are at least 10. So i dont know how that changes the treatment. I will update asap. Thank you for all your help.
Melissa
0 -
Melissa, most of us here probably have way more than 10 even on a good scan! The best advice I've ever received or given is to "Just be". The great thing is that God knows the plan, knows how it's going to go all the way through.
You relax in a hot bathtub and leave the worrying to me for a little while. I'll take over and you just be.
Love from PatGMcGettin-In-Yer-Business!
0
