Ibrance (Palbociclib)
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Jaycee, I sent you a PM with my email address earlier.
Thanks, Faith
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lynnewood - got the magic mouthwash!!! Hooray!!! So much relief!!!! I could eat a real dinner and not just ice cream!!!
Nkb: I’m so glad you listened to the podcast too!! I’m gonna check out the other ones. They really do inspire hope and optimism and it is all fascinating to be part of this entire bizarre experience. Not that I would be here on my own wishes but what a trip this is nevertheless, right?!
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Met with my oncologist today. I started my fourth cycle of Ibrance this evening. I really don't have any side effects or complaints. The issue is my tumor markers have gone up every month. If they do not go down during my next oncology appointment in a month, he wants to do a PET scan. I am just looking for some encouragement and guidance as to the experiences others have had with starting Ibrance and how long it takes for it to start working and my tumor markers start to go down. I have MBC but as far as I know only bone mets. Also on Faslodex and Xgeva. September 7 will be my 5 year anniversary of my diagnosis so I look forward to hanging in there a bit longer. Thanks in advance for your advice and encouragement.
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I still had trouble with the link, Penny, but maybe this one will work. I found the article at the Onclive site (anyone can create a sign-in). It is so encouraging! Thanks for posting it!
CDK4/6 Inhibitors Continue to Revolutionize ER+ Breast Cancer Care
Wandering, welcome! You have SO much to be encouraged about! It's a shame that you need to be here, but we're glad to have you, and things are happening every day in research and treatment. My bet is that you'll be hanging around for a very long time to come!
Hugs-
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wandering- I'm sorry about your rising markers. I have heard on other sites of something called a flare. I believe it's were your markers go up because the cancer is reacting to the medicine. I've seen women get upset over markers one month and then the next scan they are doing the happy dance. It can take ibrance up to 6 months to start working.
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Wandering- You and I are on the exact same regimen. I'm about to start my 37th cycle and all is still good. Just hang in there...better days are on the horizon!
MM
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Lovefromphilly, SO glad you got the magic mouthwash!! I know it really helped me.0
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Wandering: my TMs rose for the first months on treatment (starting value of CA 15-3 was 38 in 9/17, 149 in 11/17, 162 in 01/18, 171 in 02/18), even though the primary tumour was shrinking significantly. In 03/18, I had a first decrease to 130. My most current value in 06/18 was 71! My primary tumour is almost gone, and so have my enlarged lymph nodes. My bone mets are stable with a small sclerotic rims. My theory is that the increase was a tumour flare, because the TMs are also released when cancer cells are dying. Therefore you should not abandon Ibrance during the first months just because of TMs, it is relevant what the scans show.
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Lynnwood thank you!! I slept 12 hours last night (such relief from the pain!) and only had to get up once to do another mouth swish. I am sooo relieved. Did you find it also helps your mouth sores heal more quickly?
My MO did acknowledge that mouth sores from Ibrance affect about 30% of people. He said if it continues this badly that we may try a diff CD4/6 Kinase inhibitor...but that they all can cause mouth sores.::I just put it out into the univernse and to my body that this one had to be the last and grand finale!
Also about to take a three week Ibrance break while I am on vacation. That should help too!
Hugs!! Brenda
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Ladies: Thanks for the encouragement - that's what I love about this group. Experience. My oncologist does not usually offer much input as to cause/effect. I think he is concerned since my tumor markers have gone up consistently since I started Ibrance. I have not had a PET scan in a long time so I think that's another reason he is wanting to do that. I was awake last night worrying about the overall program. Going on vacation with my husband in three weeks and wish I didn't need to worry about what is happening. I am working on my mental attitude for the trip. I think I am fortunate that I do not have very many side effects from the meds so that's a very good thing. Anyway - thanks again.
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Wandering, my tumor markers never provided any usable information, so I can't be of much value there. However, it took 6 to 8 months before I saw real Improvement after beginning Ibrance. For now, at cycle 19, I am considered NED!
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Thanks Lynn. How did you determine you were NED?
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Brixton, there is a UTI thread on this forum with lots of good ideas. I don't have kidney stones. They bring a whole other player to the party.
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Wandering, my tumor makers are not useful, either. I've had no new spots and no uptake on old lung nodules since about cycle 10. I'm on cycle 27 with six months of skipping the drugs for various reasons. That's 33 28-day "months" of no progression. My MO does not say NED. She says NEAD (no evidence of active disease) because my lung nodules are still there but not growing.
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Lovefromphilly, yes the magic mouthwash has definitely helped with the healing. In fact, I haven’t had any in months now. I was astonished at how painful those things are!!! I couldn’t even drink water without pain. So happy that you are getting some relief!!0
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Hi everyone! Question...when one is deemed NED or NEAD (assume verifed by scans) is there protocol of being able to stop taking (in our case) Ibrance? Or does this confirm that the cancer is responding and the treatment continues?
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The treatment continues. I would be petrified to stop treatment. There has been some discussion on another group I’m in, where some oncs are saying it’s ok to stop Ibrance but stay on Letrazole. For me personally, I’m sticking with what works.0
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Wow....for me personally, I'm sticking with the program. We all know that this regimen is not healing us of the cancer but rather defeating it for now. I'm grateful for what it's doing and pray that it will continue for a long time. Meanwhile, the researchers are scrambling to come up with the next big thing that will either cure us or keep us going until a cure is found.
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Wandering I am on the same regime, I just started Ibrance on the 18th. Today I notice my scalp is sore, For the ladies with Fasoldex injections, they always warm it up ahead of time, and I totally relax the leg of the side they are injecting. The nurses are really good, I am a little stiff that nite by the next day I am good. I am wondering what has made my tumor markers rise since March and I hope this is the trick to bring them down.
So happy to see the ladies who are NEAD.......that is my goal.
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I agree with sticking with the program. My onc recommends it since I can tolerate it. No protocol to stop that I know of
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Thank you all for responding! 💕I would agree, stick with what works. I was curious what NED/NEAD, never knew that term existed until I read many of the postings on this wonderful board, but I sure would like to hear my onc say it to me. I just started my 2nd cycle, so far, so good. I remain positive and hopeful a cure is right around the corner.
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I have to give you my thoughts tonight about "sticking with the program ". It's fine if you can tolerate it but in my case, my QOL was not great. There are a lot of new people here since I was more active on this thread so many do not know me. I took my last Ibrance on July 31st last year to feel better for a trip to Italy, fully expecting to go back on it when I returned. My MO said I could use just the letrozole for awhile so that's what I'm doing. I also took a longish break from this thread. Tonight I was reading back over some earlier posts from May (I believe on about pg. 423) when I came across a link to an article saying the letrozole alone after a long disease free interval seems to work well and can keep us stable again for a long time. In my case, my cancer returned after about 25 years so it's apparently very slow growing and that's what my MO based this decision on. So, if you've had a long time between bouts of cancer, it may be a not unreasonable option for you if you have trouble tolerating the Ibrance. My problem was not the blood work but the overall fatigue with several other SE's that was hard. All that being said, letrozole is no walk in the park either. I think we all believe Ibrance is causing our issues but it could be the letrozole. Just some food for thought. Oh, and in case you missed my post of a couple of nights ago, I'm still stable after a year of no Ibrance.
Prayers for all,
Faith (in the future).
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Faith - I took letrozole only for 7 months, and I had achy bones, fatigue etc,. when diagnosed stage 4, ibrance was added, and maybe I am more fatigued, definitely have lower neutrophil counts, so I agree the letrozole could certainly be the culprit 😉. I didn’t have much time off between original dx and mbc, but pray I stay around for a long time😁! Wishing us all better health and QOL, Janice
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Neuropathy. Right hand, my dominant hand. Thumb, ring finger, and little finger numb along with karate chop edge. All fingers stiff. Often there are sharp, shooting pains that are off the charts. Can't really use this hand, certainly not for any fine motor skill. I read this is a possible SE of Ibrance. However I did have some of this just before dx, although milder and it was there during Taxol. It just seems worse now. I had lymphedema in that arm too which is mostly better except for the wrist being slightly swollen and stiff. Truly, this pain is my worst pain. I am almost whimpering with it by evening and sometimes go into Lamaze breathing, lol. I am using a stress ball for gentle exercise and doing some other hand exercises I've found. I take tylenol and it helps a bit. Last week my onc offered a med, gaberpentin (sp?). I said no, for now. Today I read that Lyrica helps. I'm reluctant to start taking yet another med with more possible SE's. If you've had neuropathy please tell me how you've dealt with it. Thanks!
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I have very bad neuropathy in my feet. I've just endured it so far. My PCP wrote me a script for Neurontin (the long g word I can't remember) at 300 mg three times a day. That was way too much. I took one 300 mg at bedtime once and got very unsteady and almost fell going to the bathroom in the middle of the night. My MS people (nice having extra people), who commonly take it, told me to try 100 mg. I haven't gotten around to getting that yet. Been too busy with UTI's. I think Lyrica is very expensive and I have enough trouble figuring out how to get Ibrance paid for. I did start taking extra vitamins B6 and B12 per Dr. Google. Don't notice any difference from that. The numbness, burning and shooting pain are bad, especially when supine. It feels like I am wearing a pair of shoes that is two sizes too small and, of course, I can't take them off. Sorry you are having this and sorry I couldn't be of more help. I suppose you are right handed. Of course you are.
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Jaycee I had a lot of pain in my feet when I was on Xeloda. At time, when I was tired I would get shooting pains in my feet. What helped was soaking my feet in room temperature water I tried ice water first but couldn't tolerate the temperature difference. I then tried room temp water with the idea that I would gradually add ice to bring the temp down. However the difference between body temp and room temp was enough. It usually gave relief in about 5 minutes. The theory is that Xeloda causes the capillaries in your feet to leak into the interstitial tissue causing pain. The suggested drop in temp causes the capillaries to contract and stop leaking. I know that you are not on Xeloda, but It is worth a try Its cheap and no side effects. Just dry your feet well afterwards and apply lotion.
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Muddling through Have you tried hot wax on your hands? Revlon sells a reservoir and wax that you can buy at the drug store. You might also try going to manicurist and having her wax your hands. I used to work in a clinic for handicapped kids, many of whom had spasticity in their hands. The occupational therapists used this technique and it often helped.
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Jaycee and Hobbes, thanks for your replies. I'm sorry you have this pain too. I take a B complex vitamin but haven't noticed any improvement. Yes, I'm right-handed. You should see my so-called handwriting. It looks like a toddler's first attempts at writing their ABC's.
Of course g makes one unsteady and Lyrica is very expensive, drat! Maybe I'll ask for a sample next time. Thanks for the water idea. Also the wax. I used to get manicures where they did that and it was soothing to my arthritic hands.
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Muddlingthrough and Jaycee, I suffered so much with such joint and muscle pain. My quality of life was really affected. I went to a pain management doctor and she offered me Gabapentin ( NEURONTIN). I was very hesitant because I didn’t want to feel drugged or loopy. She suggested a low dose and increasing slowly. I took 100 mg at bedtime for a week then 200 mg at bedtime for a week and now on 300 mg at bedtime and I see her next week for my follow up. This medicine has given me my life back!!! I can’t believe how much better I feel. I still have pain but it is SO much easier to manage. I was taking 6 Tramadol a day with little relief and now am down to 1 or 2 and a couple of Tylenol. The pain management doctor says if I was tolerating the Gabapentin she would continue to increase slowly until I was on 300 mg three times a day. Maybe worth trying for you guys if your doctor does it slowly.0
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I'm now one year into the Ibrance dance, and got my results from my recent PET scan - even better than the last one! No evidence of disease at all - no FDG uptake, nothing. Onc said they couldn't even see where the bone met was, and if it weren't for "surgical changes", they wouldn't have known where the original tumor was. Hooray!
She told me to keep taking the Ibrance/letrozole, and wants to see me for bloodwork in four months. Until then, nothing needs to be monitored. My numbers have been consistent through this whole year, so she sees no reason for monthly checks anymore. On the one hand, I'm thrilled. On the other, I'm nervous!! Of course, I got the standard, "If you notice any changes, or feel anything out of the ordinary, call!"
Is anyone else not doing routine bloodwork?
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