Ibrance (Palbociclib)
Comments
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PatG - your story of pneumonia sounds so much like mine, end of May (while on Afinitor). Including wetting the bed to cough ! I had a brand new fluffy white mattress topper ... now there's a big yellow spot ! I peed through god knows how many sets of sheets at the hospital. And the pain you describe in the ribs - it was like little devils poking me with their tridents. I hope it never happens again for either of us. I wrote this experience here The perils of Paula, if you feel like a laugh. I did not have blood clots in the port though, sounds horrible ! Glad you survived to tell the tale.
Mica, thank you so much for sharing your history with us. Please share your results, hoping for the best. I have a PET scan tomorrow, probably will have results to share by the 16th of Jan.
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Amarantha I was so glad (not really) to hear that they pay little attention to your skin mets. I have them too and little attention is paid to them. I had them so bad when I first started the letrozole and Ibrance that I was afraid that I was misdiagnosed and had some other form of cancer also. I hardly saw anyone talking about skin mets so then my wonderful brain had me thinking all sorts of crazy stuff. After my 3 round of Ibrance my skin mets almost all disappeared but I have a nasty scar and the skin feels so delicate that I was afraid if I\I pushed too hard my finger would go right inside my breast!!! LOL However they had to reduce my Ibrance to 100, I started 125 because of low counts. At my last visit the Dr. said that I should put moisturizer on the scar, I listened and in 2 days it looked like sores were breaking through so I stopped. I am wondering if this is going to be an on and off thing for the rest of my life....however, I have seen much improvement and am thankful for it. I have been on this treatment since September, 2017 and hopefully will be on it for a while. Even though I have SE, I know that other treatments can be worse so I am thankful for the little things.
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Suzymom did the skin mets leave colour changes in the skin ? I'm really happy to hear that they almost disappeared after three rounds. But it is weird that the skin lubricant made it look worse. What does that mean ? I do think mine have finally begun to diminish. Actually they are worse in one part but better in another so hopefully in another round the Ibrance and Faslodex will be more clearly victorious.
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Suzymom and Amarantha: It feels good to know, that there are other people with skin mets as well since so little information can be found on them.
Actually, my skin mets are in the 3rd layer of the skin and originate from the lymphatic system, is that normal? Thank god, they are no open wounds and I hope it will stay that way for long. They rather look like about 10-12 red-purple pimples of 1-2 mm underneath the skin. I think that is not really bad, but they are an everyday visible reminder of my mbc.
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Hi my friends! I am puzzled after a blood test. The first circle of Ibrance coased WBC and everyto go below any borders. 2 weeks break and started on a lower/100/ dose. After the first week the blood was better than when I started!!! Eaven the RBC. First thing was to ask is it possible to be mistake. Said no.
The last 2 weeks I was taken Maitake D extract . Is it possible this drops to help so much, or before to be too happy to wait until the next week test. I will post again and if this is true it would be a big help for us.
Aramata i will pray your results to be better than you think.
Leapfrog , happy to see you posting.
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Amarantha....Oh. to be French and spilling over with beautiful words! As we say down South in America, "You are a hoot!" Thanks for sharing your story of visiting the other side and making it back to life in an ironed nightgown!
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Lilliemillie, I wish they did PET/CT scans on everyone all the time. The place on my liver shows no uptake on the PET/CT and my oncologist has teasingly called it "one too many Whopper Burgers" or FAT! I pray that your scan shows the same, friend. Mine has been there since 2012.
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candy, my poor husband had fretted over me in the bed for days and I heard him in the bathroom with the plunger. He broke that one, went and searched out another which also broke, then left to buy a new one. Squishy, wet towels ankle deep all over the bathroom. He called and the plumber couldn't come until the next day. I think Mike might have PTSD!
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Patg....reading your posts about how sick you were....don't know how you made it thru. So glad you are better. New girls welcome....0
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In case anyone wondered how much the ANC can recover during a 2nd week off Ibrance: my ANC went from 0.94 after 1 week off up to 2.9 after the 2nd week off! Tomorrow, I can finally restart Ibrance.
I also talked to my MO about the seemingly increasing skin mets. He told me that a change from Letrozole to Fulvastrant would not make much of a difference since it is the Ibrance, that is mainly doing the job. We agreed to stay with Letrozole/Ibrance until the next staging. I am ok with that, because I very much believe in the Ibrance. The alternative would be a chemotherapy, because my KI67 was 32%, which is somewhat intermediate between the choices for AHT and chemotherapy. I am afraid of the SE of a chemo.
He also told me that I woulb be a great candidate for a study, but I believe that in Germany there are currently no good studies ongoing for mbc with ER+/PR+ and HER2- without BRCA. Additionally, I would want to be in an open study to be sure that I actually receive the new treatment being tested.
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Welcome to all the new people. I've been away for a while dealing with nasty MO issues. You will be happy to know the nasty MO is no longer. I have a new MO in the same practice which is good because all the support people are great. The switch was incredibly easy considering the process. Just a few phone calls and my next appointment is with my new MO. My oncology nurse smoothed the process considerably. What would we do without them?
I took the month of Dec. off of BOTH Ibrance and Letrozole. I felt so good. My son and his wife were here for Christmas and we had a great time (when they were not staring at their iPads). I took the time off due to recurring UTI symptoms. Opinions differ as to the cause. That was the main reason for changing MOs. He said I did not have a UTI based on cultures but I know I did. Antibiotics made the symptoms go away. I've been reading a lot of studies on UTIs and found that cultures are extremely inaccurate and the threshold of >100,000 CFU is way too high. Especially for recurring UTIs, the threshold needs to be more like 1000. Most labs wouldn't even think of looking at that low a number. They need to.
So on Jan. 3, I started my 21st cycle of I/L. Still doing fine. It is the Letrozole that has more side effects for me. I'm sitting here right now with a very hot face. I'm 68. Hot flashes? It may take a while to get used to the whole mess again.
The whole story of the MO change I posted in the steam room. This thread is just too positive to bring in so much negative stuff. I was angry and had to let it out. I mean, what do you do when your MO says, not once but twice, "I think you WANT to have an infection." That was the last straw. He had to go. I assume my new one will be better. How could she be worse? I'm looking forward to seeing her Jan. 31. She even wants to see me for LONGER than the usual appointment time. Seems like a good sign to me.
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Thank goodness Jaycee !! I am so glad you managed to change MO. I felt a vicarious thrill at your change, have been feeling same to my oncologist for so long. But then she left the service ! I'm so glad you are feeling better !
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I hope everyone is managing ok into 2018 thus far... And that those facing flu bugs recover swiftly with minimal issues.
I'm 10 days into cycle 3 and have a few symptom related questions...
• Anyone experience GI issues? Stomach pains on Ibrance? I'm not bloated but have been having wretched abdominal cramping most afternoons/evenings for the past 4-5 days.
• Are others having to rely on (G-CSF) neupogen/neluasta or grastofil to make it through cycles? My bone marrow is not happy even at 100mg. By day 7 on this cycle my neutrophils went to 0.6 (started at 1.5). MO has me doing the G-CSF shots now every other day to carry me through my entire third cycle. HELLO bone pain!
• Anyone else experience a slight heaviness / breathlessness in the chest when their counts are low? Seems to be a thing for me whenever my neutrophils are under 1.0. It is accompanied by a deep deep exhaustion.
I don't wish others to have these same issues but of course it's comforting when you're not the only person facing it.
Much love to all. xo
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Ashlyn, yes ... I've got a crackling in my lungs at the bottom of the exhale. GI issues too. Hmmm. My neutrophils are low, but not alarming... yet.
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Ashlyn: I feel almost the same. I am on my 2nd cycle on I/ L and had to wait 2 weeks my blood counts to come back to normal and start the second one. I feel short of breath, my skin is pale, but what choice do we have.? Maybe lower dose? I am on 100 and there is one more step back - 75 mg. I wrote earlier that I am taking Maitake d exstrat and the last blood test was surprisingly good. If the next is relatively good, it means those drops are helping.
While on the 2 weeks off I felt sooo normal....
..I wish you less SE and good result
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Here is some January reading, nothing really action-able for us, but it is encouragement that the research continues at rapid speed:
A paper in Science shows that immune system macrophages can help cancer cells metastasize before a tumor mass even develops"
(This may explain why early diagnosis and treatment is not always a cure)
https://www.sciencedaily.com/releases/2018/01/1801...
Two papers in Science show that mutations affecting a regulator of chromatin and gene expression, BAF180 (also goes by other names) makes cancers more sensitive to immunotherapy:
https://www.sciencedaily.com/releases/2018/01/1801...
A new test was developed that can predict response to immunotherapy (but is not yet available commercially):
https://www.sciencedaily.com/releases/2018/01/1801...
An older drug affecting the protein REV-ERBb was found to kill cancer cells, but not normal cells, by preventing 'recycling' of molecules and therefore starving them of nutrients - because this is a process used in all cancer cells, new derivatives of these older drugs could be used to fight all types of cancers:
https://www.sciencedaily.com/releases/2018/01/1801...
... and we are not even halfway through the month!!
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If your eyes roll back in your head when you read this, I won't be surprised but I have to tell you in case it might help just one of you. In 2012, when I was taking Taxol/Carboplatin every 3 weeks, I drank large amounts of Welch's Grape Juice (the purple one) on 5 of the 6 cycles. On those cycles> 1, 2, 3, 4 and 6 my red counts stayed in the normal range. Just to see what would happen, I didn't drink the grape juice in the weeks after cycle 5 and guess what? My red counts dropped a bunch. After #6 with the juice, the counts were back to normal! My oncologist just grinned when I told him but he wrote it down. Anyway, I still drink it to this day. It may help and it may not but, since I like it, it's all good.
Different story when it came to freshly made Kale juice> I tried for months to drink that, paying a ridiculous $7.00 for the small servings at Whole Foods....Hated it! It finally came down to wondering whether I was going to live longer or it was just going to SEEM longer! I'm happy for those of you who drink it and thrive but it's not for me.
Have a great week-end, everyone! Memphis is closing down at the prospect of a little ice during tomorrow's rush hour. We love it because our granddaughter gets a super long week-end with Friday off and then Monday's MLK holiday.
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We are so fortunate to have "writers" on this string....Amarantha, you write like an angel. Wow! I'm envious. Your description of your hospital stay was amazing and uproariously funny (if hellish). The creative streak obviously goes in many directions for you!
Patg, I'm so glad you survived the onslaught and glad that you're back among us. I love to see your name jump up, as your post is usually interesting, informative, and funny! I thought about you yesterday...I was listening to Prime Country radio, and a song called (I guess) "Living on the Wrong Side of Memphis" was playing!! But....she was apparently headed not to the "right" side but rather to Nashville!
Hugs to all and apologies for getting off topic.....:) and welcome to all of our new ones-
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hi friends
I just wanted to say .me too I am hoping to change my oncologist soon.
Last appointment I felt so upset and just angry i relaized I dot néed that right now .
I will ask my other dr to recommend someone else and I will switch as soon as I can .
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I am new to this and so thankful for the wealth of information that I am able to obtain here. Unfortunately, I will be going through this journey of treatment and healing with you all.
I will be starting Ibrance in the next week or so. I am not post menaupsal yet and have been getting the Zoladex injection to shut down the ovaries. Hopefully it will work soon (had 2 injections so far) and I can start on the letrozole and Ibrance combo shortly.
Aside from all the treatments, side effects etc, really want to know if I will still be able to enjoy life once treatment starts. I am 41 and would love to spend many more years with my family. Wehad plans to go away in March before all these happened just before the Christmas holidays.
What have your experiences been after treatment in terms of traveling? I am afraid that we all th possible side effects especially low white blood count, wouldn’t it be risky to go vacation?
Thanks for your kind support
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Thereishope, we're sorry that you have to join us but glad to welcome you among us. I suspect that you may be pleasantly surprised at the side effects. At least on my part (and I'm on cycle 12 of Ibrance/Faslodex and Xgeva), they are very few. I have experienced a bit of hair thinning (just a bit), and I'm more tired than I was, but I'm [a frisky] 71. Other than that, I feel (and look) normal, and for that and for this medicine, I am so very grateful. I have traveled and have had no issues. Our son's wedding was in New England (we're in VA), and we drove up and spent 10 days away as well as having a vacation for another 10 days on a lake in New Hampshire this past October. You will want to stick to your medication schedule, I think, so you'll need to sort that out if medications need to be delivered to you at a distant location, etc. You'll also need to have blood work done before starting cycles, but you should be able to figure all of that out with your onc. Forge ahead and plan to live your life fully! Miraculous developments are happening every month!
Hugs to you and your precious family-
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thereishope - Stick with us! These women are world travelers! I can't tell you how many times Babs had been to Paris! And will continues to go as her Dd just had a lovely baby boy! There is Photogirl, who has been to Africa and there are others who have traveled to Japan, Italy, the Galapagos, Hawaii, just to name a few. I have not gone overseas in years but I have been to Yosemite national park, Yellowstone, Glacier national park and lots of lesser known National and State Parks. My Dh and I take our horses camping and riding as much as we can. We also took our Motor home out west a couple of summers ago for two and a half months! I go to NC to see my Dr and grandsons at least seven times a year. We are going with a group of riders to a State Park here in Florida for a week. We leave on the 22nd. This time of year is our prime time to camp and ride.
So yes, you can travel! Hugs and prayers,
Claudia
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Enerva, I don't want to jinx myself as I have not had an appointment with my new MO yet, but I feel like a weight has been lifted off of me with this change. I was always very upset after my visits with my old MO and didn't sleep for a week. You should consider it carefully (I did for three years, too long) and do it if you feel it is the best choice.
Ashlyn, I had GI issues (abdominal cramping and diarrhea) the first two months on 125 mg and went directly to 75 mg. No more after that change.
Thereishope, like Joyner, I traveled to my son's wedding and then spent five days at the beach afterward. (It was n FL.) It takes a little extra planning but it can be done. (Don't want $11,000 worth of a drug lost in luggage.) I took an extra week and a half off of Ibrance on that trip. I have other health issues and I'm 68 but do pretty much what I did before.
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Thereishope, Welcome to out little part of the world although we are all sad you have to be here. Yes, yes, yes...you can travel. Joyner is correct that you just have to work out the meds and labs, but I have cruised, flown across the country (CA to NY) and travelled by car all successfully. Take precautions. Wear a mask if on a plane near someone coughing, and sanitize the tray when you sit down. Just be diligent in a hotel and don't over do it. I am on cycle 20 and plan on flying to New Orleans in a couple of weeks. (My DH is going for a conference and I have never been so I am tagging along.) Several of the ladies here have flown to Europe and the Far East. Have a great time and enjoy life.
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This directly relates to people on Ibrance/Letrozole.
http://www.scripps.edu/news/press/2018/20170111siu...
About xenoestrogens:
https://womeninbalance.org/2012/10/26/xenoestrogens-what-are-they-how-to-avoid-them/
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I'm not getting too hopped up.about this study. Two definitive paragraphs are below. The first gives a rather vague delineation of the foods that MAY affect I/L efficacy. The second says there are many other types of things that could POTENTIALLY have the same effect. They are laying the groundwork for future grant applications IMHO.
"Zearalenone is produced by fungi that colonize maize, barley, wheat and other grains. It has been linked to birth defects and abnormal sexual development in pigs and other livestock, and is suspected of having caused an outbreak of early breast development among girls in Puerto Rico in the 1970s. Genistein is produced in certain plants including soybeans and is often highly concentrated in phytoestrogen-rich food supplements."
"The results indicate that these dietary xenoestrogens do have the potential to affect cancer therapy outcomes—and genistein and zearalenone are just two of the many xenoestrogens commonly found in the human diet. "There's a high likelihood that other xenoestrogens would counteract the therapy in a similar way," Siuzdak says."
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My skin mets had progressed from a red rash that turned into yellowish thick scabs and it was open wound under that. That is what fooled my diagnosis so long. My mammogram said I had no growths so they treated me for shingles, then another skin disorder then impetigo then finally did a biopsy. Right now I have a large scar on half my breast and the skin is very thin, however, now I have two places where scabs have formed and it is tender underneath but it is nothing compared to what is was a couple of months ago. I am sorry to gross anyone out but I don't know of another way to describe it.
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Suzymom: I keep my fingers crossed that you will experience some more healing of your skin mets. I find this visual reminder of our disease very mean. It is bad enough to know about the foreign tissue inside and feel the pain, but dealing with open wounds is really bad.
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I am looking for articles and data about Ibrance, dose reduction and improved PFS/ability to stay on the drug longer. I found a slide from Bestbird's summary of San Antonio BCS but want to read studies. I am contemplating a dose reduction. Although my blood counts look good, I am tired of feeling awful. Something has to change.
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Joyner et al- Only here among us are the 'younger' ones jealous of the 'older' ones! Can I get to live to a frisky 71 too?! now that's become my new goal- modern medicine has got to make it happen!!
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