Ibrance (Palbociclib)
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Sarah. I have heard that lowered immune system and stress can make all types of herpes worse. Shingles is a type of herpie and I had my outbreak right after starting my last chemo pill(afinitor) It was my first time having shingles. It started in my head and moved to around my eye. It is not fun. ...but went away really quickly with valtrex.
This sort of feels like the same thing. I do have two itchy bumps in my head. So we will see if it starts to spread. This is also the same tingly feeling I got before I lost my hair. I hope that is not the case. I'd rather it be shingles.
I have had very itchy skin since I started the afinitor and it has continued on the ibrance. I actually believe I have eczema. I had a horrible rash on my hands that is now gone. But I think I have eczema on my legs and feet. So itchy! Anyone else get this? I won't use any chemicals so I try to treat it naturally. It stops the itch for a bit.
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Argg, I've had herpes simplex on my lips since I was a teen. Since menopause they've decreased significantly however it makes sense that could make an appearance again.
Sarah I'm terribly sorry to hear about your situation and hope you recover quickly.
Amy
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Hey all. Haven't been posting on this thread much lately but wanted to let you know I am officially out of Ibrance land. I had a PET this weekend and although my bones look excellent, my liver load has substantially increased very quickly. I am moving on to Xeloda in the next few days. I have pretty aggressive disease, it shrunk immediately and substantially when I first started hormone therapy . . . . and now it has grown quickly. I did 14 + months of hormone therapy (aromasin and faslodex) and Ibrance was tacked on about 8 months ago. I am disappointed I blew through so many meds so quickly.
My tumor markers have been spot on with all this - although they always stay VERY, VERY LOW - the changes are 100% indicative. I was still within normal range of CA 15-3 at 28 when we grew suspicious a week ago - but it was a big jump for me, as I otherwise remained between 18 - 20 consistently for 8 years before mets diagnosis and after treatment started working just over a year ago. When I was first diagnosed with extensive liver and bone mets, hospitalized with uncontrollable hypercalcemia, my tumor markers were only one point above normal at 32. Regardless, they are spot on. Goes to show that we are all so different with these markers!
I hope the rest of you have better results than me. This is a good drug. I just may not have had the mutation that Ibrance impacts. It is possible that I was only responding to the hormone therapy all this time, and I eventually grew resistant to that.
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JFL, so sorry to hear you are leaving Ibranceland, but have high hopes that Xeloda will knock those liver mets into oblivion. Very interested to hear about your TMs as mine have always been very low too. Sounds like it is good to keep an eye on them anyway. Best of luck on your new tx, hope it is easy on you and tough on those damn mets. Please stop back and let us know how it is going. Sending hugs your way!
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I'm so sorry, JFL, but I'm hoping and praying Xeloda will give you a very fast response, as it seems to for so many who have gone onto it from Ibrance. Big (((HUGS))) to you, and as jobur said, please stop back and let us know how you're doing. Deanna
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Yes, JFL, hugs for you and your new tx. Prayers that it's the one that helps you for a very long time! Do check in with us.
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So sorry to see this JFL, but thank you for posting. Hoping Xeloda provides a fast response and relief. Were you on Ibrance 125 and did you have any SE's?
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Thanks for the support, ladies! I do feel pretty sad and scared today. My husband is a mess. I had to tell him to stop freaking out thisweekend. At least he expresses himself and doesn't bottle it inside.
lalady, I did one round of 125 and then moved down to 100 and stayed there during my time. I had some side effects - low white cell counts/ANC although they recovered in my off week (as long as ANC was .5 or above, my Onc doesn't move people below 100), some fatigue, puffy eyes and cheeks, runny nose, lack of oil in skin/hair, slowed hair growth on legs/increase in cold sores. However, none of it was worth complaining about - I just felt fortunate to be avoiding the tough IV chemos and continue to feel fortunate about that for now as I move on to Xeloda.
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JFL - my onc also doesn't move folks below 100 either -has kept me at 125 despite some SE's requiring a blood transfusion. Good news is round 3 is working. Rooting for you to have good results on Xeloda - it's a pill not a IV, so DH should feel some relief. Please pop in and keep us posted. Hugs to you.
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Ugh!!! I am so over wondering which pants are going to fit from day to day! Anyone else? Mbc and Ibrance have certainly done a number on my until now somewhat athletic body! Today I put on a pair of jeans that are normally quite loose, and I could hardly zip them -- in spite of no significant fluctuation in my weight. It seems like my body is shifting and everything is gravitating to my mid section, when it never did before. Ugh! I know it's nothing compared to a med failing or TMs rising or bad scans, but it's depressing, and I just need to vent!
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JFL- please keep us posted on how Xeloda is treating you. I pray that it kicks cancer's butt
Deanna- going through the same thing with weight gain. I rapidly put on 7 lbs in three weeks and an additional 5 lbs since Thanksgiving. I have completely changed my diet, so I know the meds are the culprit. I had to buy numerous pairs of pants to wear. I have pants I bought right before the weight gain with tags on them. It is frustrating! I also get periodic bloating where my stomach is distended to look like I am 5 months pregnant. While I know 160 lbs is not morbidly obese, but prior to all this 145lbs was my heaviest. I wish I had the energy to workout consistently. Joint pain and fatigue from work hinder that most days. It is depressing! I don't feel like myself. I feel your pain, while ever so thankful that I am still able to wake up and curse out the mirror every morning, lol
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JFL-sorry to hear that Ibrance isn't working for you. I was on Ibrance/Femara and am now on Xeloda-having great results thus far! I'm hoping the same for you
Babs
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Oh my! first off JFL so sorry- it's so hard to make the changes. The ast/alt was not showing a change? Were they taking these BT's for you? I am just wondering how it took everyone by surprise like this?
Deanna. Mdillard - agh i could so understand. We all know that you would take the healing over bloating, but really? It's very uncomfortable. Dani is like 000 she always was petite maybe 0, she just finished 2nd round, she will go bonkers if this happen to her. She has no idea what's like to be even a bit heavy. Yes, she got fuller in pregnancy but proportional. It's gonna bother her. I could tell you that.
Mdillard whatever you decided with the rest of your treatment?
Dani is having mouth sores now, at the end of 2nd cycle. She is taking clairegel, what's the opinion our there? Is it better than magic mouthwash? Any other good pointers, I remembered reading back when, but cannot recall now who mentioned it, and what?
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momallthetime... No surgery for me... Seems unecessary at this point. I did tell my MO that he and my nurse need to get on the same page. Tired of the two them telling me different stuff!
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JFL- I'm sorry to hear that you have to transition treatment. But so glad to see that Xeloda has been working well for women who have used it after Ibrance. Sending a hug your way and all of our best wishes.
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Mdillard there you go. We had to make a decision too. First BS was scheduling a visit with plastic surgeon, but then I called him and asked if he really thinks it's necessary and then he said you know what it's not. She does not need it. That's it. She did have an oophorectomy. Unfortunately only after she had mets already. It was not easy she was in her 20's, 2 babies at home, it was heartbreaking, but it turned out easier in being able to have access to certain treatments that are only given for postmenopausal women. We try, what can I tell you. Tomorrow is blood time results, I hope it's ok. How often you have your blood drawn for WBC? She has it every week. Take care,
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I need a place to unload, and you guys are all so reassuring. I recently discussed my rising TM. The PET scan is next Monday. But, last Friday I had a brain MRI. I wasn't at all worried. I'd just had some vision issues (which some of us have shared as possible se) and my MO was just being careful as we hadn't done this for a very long time well, yesterday my PCP called (he called-not just his nurse-always a sign of something). I do have a severe sinus infection, which showed up and is complicated by the fact that I'm allergic to most antibiotics. He's referring me to an ENT for that- just a nuisance as my symptoms aren't really terrible.
But, he also mentioned a lesion was seen on my skull on the left side. Thank God the brain itself was clear. Thing is, I don't know if this is new or not. A quick read tells me a skull met is no more serious than any other bone met True? Should be hearing from my MO ASAP. Just feeling like *sighing* a lot! Thanks for listening.
Added note: MO nurse just called. Met on the skull is just another bone met. Monday's scan will look at overall uptake as far as treatment plan. To be continued...
By the way, I've also gained about 3 pounds and it's all around my hips! Not cool
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Kaption my daughter has a lot of lesions on her skull. the seriousness is that it could reach the brain, of course it's worrisome. Unfortunately, and realistically Kaption, the docs work with statistics and you are thinking of YOUR brain. that's why it's less of a big deal to the, with all due respect. Yes, mets getting closer to the inner spine, closer to organs, for me it's more worrisome. It does not mean the worse it does not mean something is gonna happen, it's just mean i'd get a closer watch. Not wait 6 mos.for retesting. Hers was progressing and it was pushing into the Dura, there were a few, so she had Gamma Knife (type of radiation very precise) and it's a one time deal. You do understand this is just my experience and advice, it's not a medical advice it's an emotional advice.
So just from our experience first get the report, and ask the doctor that in whatever few weeks you decide (in our case was about 6-8 wks) they redid the MRI in 6 wks and then bcs of progression and being so close to the brain it was decided for her to have this radiation. She still has the lesions, but it's a bit smaller, i saw the scan and it was very obvious, if you like you could ask to see it with them, or get a copy in a CD from the place you had it done, and see it for yourself.
I always get a copy of any scan she has immediately, and the report. Also from the BT's every wk, I called the doctor's to fax it to me. You are entitled to all your paperwork.First off, i like to see it for myself, many times docs could overlook something. Also, if and we did go for a 2nd opinion, I had the stuff with me, and needed less favors from the first party. The way you look after yourself, no one else does. They have many ppl in mind, and you have yourself. That's what I learned. (and I am talking about the good doctors
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I do have a question - Dani'a WBC is 2.0 and Neut Abs 1.1 and Lymph Abs 0.6 - doc said not to take the last Ibr today and she does not need the Neupogen. Could I ask you ladies, at what level does your Onco recommend Neupogen. I would think it's a good help, but they seem to want it only at extreme. Please let me know. I want to call them
Also, any other advice for mouth sores, she is on Clairgel. Anyone taking that? Thank you in advance.
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Thanks, Mom. I do have access to all bt and scan reports on my online link to KU Med charts. I can ask for copies of actual scans anytime I want. I will certainly be asking follow up questions on this after the Monday scan. My understanding, through all of this, is that my cancer is a slow progression one. I just need to finding that treatment that will last more than than 6 months😏.
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Awww, Kaption, I'm so sorry about the skull met, but very grateful, as I know you are, that your brain is clear. Try not to let it throw you. Chances are it's responding well to your current regimen, and I'm going to pray that your scan on Monday shows that. But, of course, we all get that it's upsetting and worrisome until you get those scan results and more definitive info.
As far as the sinus infection -- even though your symptoms aren't bad, it's probably impacting your immune function, so taking care of it should give your overall health a boost, as well as just make you feel much better. So I'm glad they found it, and I hope the ENT can come up with an antibiotic you can tolerate, if that's what it needs. (((Hugs)))
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Thanks, Deanna. I'm sure you are right. I think explains my overall extra fatigue this round- even after the week off.
And hubby and I were just saying we need to celebrate the brain-is- clear news instead of focusing on one more bone met! (Btw, what does DH mean on our board shorthand mean?I get by context it's husband...but what does it stand for?😏)
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Dear (or darling) Husband. Same for DS, DD.
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Hi ladies,
My TM went up about 90 points. Will have the scan results tomorrow. I haven't told my husband yet.
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ah, thanks. I was guessing "dear."
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Not sure if we've talked about it here or on FB, but last night I forgot to take my Ibrance until bedtime, and as I was about to brush my teeth a few minutes later, I coughed and a puff of white "smoke" came out! Even having heard others mention it happening, it kind of freaked me out! So thought I'd share, in case it happens to you and you aren't aware it can happen! It was pretty bizarre!
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Wow, Deanna. That is strange. Hadn't heard that.
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Deanna - WHAT THE HECK???
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Deanna that's scary stuff. Did you check with Pfizer? Or called the doc? How are you today? So you took last night, and then back to to your regular schedule?
I am reposting something I posted earlier, in case someone could help with info. Thanks
I do have a question - Dani'a WBC is 2.0 and Neut Abs 1.1 and Lymph Abs 0.6 - doc said not to take the last Ibr today and she does not need the Neupogen. Could I ask you ladies, at what level does your Onco recommend Neupogen. I would think it's a good help, but they seem to want it only at extreme levels. Please let me know. I want to call them
Also, any other advice for mouth sores, she is on Clairgel. Anyone taking that? Thank you in advance.
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Kaption - sorry to hear about scull met. Let's get that medicine working soon for your cruise. DH is dear husband as Deanna explained above (also explaining my tight pants). Some of the nomenclature takes getting used to. I'd like to send you the book "When Breath Becomes Air". Please PM me your address in KS. It's uplifting and sounds like you need some good reading. You must stay positive. Just got home from work and found out I'm supposed to moderate a webinar at AFCI in April. Well at least they won't see my thinning hair.
Momall - wow you are amazing. Keep those Drs on their toes and make sure all tests and scans are explained. I questioned a bill while I was kept waiting at UCLA ER in January, and they knocked it down to just $250 copay. We must be our own best advocates. Love the ladies on this thread.
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