Ibrance (Palbociclib)
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Hi all,
Brutersmom- my original hair and nails are super strong and thick - literally my hair was so thick my entire life I could barely fit a hair tie / hair band around it twice (one of the larger ones) for a pony tail. Now I need to use the tiny ones and can wrap it 2-3 times . It's surreal . My hair dries so fast now. My hair has always been wavy/ curly and now it's straight / fuzzy. Also weird . My mother in law recently visited and asked me why I am straightening my hair - I am not , it's a side effect of the meds that are keeping cancer away!. I dont have visible scalp areas but it's shocking to me in photos . Nails are the same as you describe . I am coming up on 4 years of Ibrance and fulvestrant in November . This is my biggest side effect from these meds so I feel fortunate . Like Chicagoan , I now keep my nails short . For a while I was getting gel nails but that seemed to thin my current nails too much so they are currently recovering from that process.
I am back from a 3 week trip to Portugal / France and Spain. It was amazing . We went with 10-12 friends and have different people at different cities (centered around World Cup Rugby games in France). Spain was the last 3.5 days and just me and my husband . We had to buy these tickets 2 years ago so during the pandemic and of course I had MBC. My oncologist at the time (she has since moved to research only) gave me a blank look and told me to buy trip insurance when I told her of this trip we were planning for 2023. Tbh we had to get the tickets far in advance but didn't book the flights until 5 months ago. Game tickets could have easily been sold. My current oncologist remembered I had this trip planned and was really happy for us which made me happy (when I had my telemed in August). I have never had a 3 week vacation! We had such a good time and I do believe I had a day or two there where I didnt think about MBC !
I hope all of y'all are feeling as good as can be right now . I'm not trying to boast about my trip when i know we experience a lot of up's and downs with MBC including progression and treatment failure. I wanted to tell you about my trip because I was afraid to plan anything farther than 3 months in advance (scan to scan ). This was a big step for me and might give some new Ibrancers hope. The struggle to live while we are in the trenches is exhausting, sad and often feels defeating.
living furiously with MBC is the only way I can describe it.
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Hi Aprilgirl So pleased that you had a great trip to Europe. While you were here in Europe my husband and I had a super trip to see family in Philly. We decamped slightly earlier than planned to Ocean City as the escaped convict was hanging out in places near us and they closed the grand children’s schools. I too had very thick hair, good nails and skin . Obviously 7 years on Ibrance and Letrozol have had an effect but I am also older and the menopause would probably have had some effect anyway. However still enjoying life, travelling and having fun and that is all I ask for - plus a cure would be nice.
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i had read about the escaped convict in PA - terrifying - relieved he was caught . I love nothing more than a trip to the coast with family. I agree menopause has an impact on our bodies, hair and nails. I was accelerated in to menopause or chemopause when I was 44. Yes, I had some hair thinning but nothing like I have experienced with Ibrance . I understand why (halting rapid cellular division I think ?) and would accept complete hair loss if it meant cancer was kept at bay but it is significant.
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Snowdrop, I'm so sorry to hear of your progression and the mixed opinions of your medical team.
Aprilgirl, I seem to recall you talking about this trip. I'm so glad you got to go and that you had a blast.
I'm still off Ibrance due to swallowing issues. At least my MRI from yesterday for my C-spine was stable. Now if I could just get an answer to my swallowing issues. More tests pending…
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Aprilgirl, I'm so happy for you that you had such a wonderful time on this trip! I do remember when you booked it and it seemed like such a long ways away... and you got to go! This is awesome. I love that there were a few days that you weren't even thinking about MBC, what a gift. Great to hear about this, it made me smile hugely.
Snowdrop, I really hope you can see another MO, that one you talked with recently sounded uninformed. The ERS1 mutation makes you eligible for a very new med, Orserdu. This particular mutation is fairly common for folks on CDK 4/6 inhibitors. I think you said you do have that one?
Sunshine, good to hear your MRI was stable! The swallowing problems you've been having, ugh, this has been going on quite long enough. Can someone please get to the bottom of this for our dear Sunshine? By someone I mean doctors, although of course of anyone here has had a similar problem, let's share our collective wisdom.
I know others were talking about pain for bone mets, my experience has been that the mildest, least potent Rx pain med available (tramadol) works pretty well. I only need one of the lowest dose pills per day now. I do also use a very small amount of THC/CBD tincture at night that helps with sleep (I live in CA where it's legal), so it's possible that could also be helping.
Oh, and my hair... it's basically hilarious, or should I say hilHAIRious? I keep it Judi Dench short now, and try to be grateful that I have some. Some. If I try to let it grow longer, I basically look like gollum from Lord of the Rings, so no thank you, short hair for me!
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Snowdrop, I am sorry to hear about your progression and also hope you can switch MO's. I know that can be stressful. Keep us posted !
Sunshine99, I am so sorry you have had this issue with esophagus spasms . It sounds awful. I don't blame you for feeling nervous about starting Ibrance again and fingers crossed, everything stays calm.
SFCakes - Judi Dench is gorgeous ! Always great to hear from you - great advice on the pain meds and cbd/THC.
I don't have bone Mets but do have some joint pain from fulvestrant. Based on info I read on here from Cure-ious I asked my MO for an rx for celebrex and it helps with my joint pain and is a P13KCA inhibitor. I did PT for a couple of months before my trip and had a cortisone injection 2 weeks before I left , hip felt good - I continued with yoga and pt exercises while I was out of town .
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Aprilgirl. Sounds like you had a great trip. My MO is all-in favor of living life. He encourages it and works my meds around it. I am glad you had the opportunity.
Thanks everyone for Shaing your experiences about nails. I have notice changes in my hair. My hair dresser suggested massaging my scalp with a light oil and leaving it on over night. My hair definitely looks healthier. I have been using coconut oil.
Chico. Glad you had a great visit with your family inspire of all the excitement. I live in a 20 mile radius of the last confirmed place he was seen. It is so wooded around me. Was glad when they finally caught him. But no sooner did they catch him them they had a riot Saturday night at a juvile center for sex offenders and multiple offender juveniles 6 miles from me. 9 boys escaped. 4 turned them selves in early the next morning and the other 6 were caught Monday Morning about 2 miles from my house. Sever schools were close Monday and interesting 4 boys were from the the Lemoyne/Harrisburg area and the shut a shopping mall down where they were known to hang out. They thought at one point they had stolen a car.
Sf-cakes. I have mine short as well. It was horribly buzzed in April but it has finally grown long enough for a nice short style.
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Sunshine99 did they ever figure out what the tree in buds nodes were for you?
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Aprilgirl-We must have had the same kind of hair. Ever since puberty, my hair was extremely thick and somewhat curly. Now it is like my pre-puberty hair (except for being gray 😁). I kind of like it b/c now I can sometimes get away without heat styling it which was almost impossible before-it was an uncontrollable bush.
I'm glad you had a great time on your trip and you posted it. Lately I've been reluctant to post on BCO b/c my life has been good. I know it can change but it is good now and I think it upsets other people if some are doing well when they are not. For me, it is very encouraging to know that others are doing well with this disease. I had my 7 year cancerversary this week but didn't do a celebratory post so here it is now. I am extremely grateful to have been given these 7 years. I would like many more but know that may not be in the cards for me. I just try to "live furiously" each day. I don't feel any guilt about spending money or having fun b/c I know I might not even be alive next year. I wish I had lived this way my whole life. Today was beautiful in Chicago. I did a charity walk for ALS with a friend who lost her husband to that beast, then snuck off to a Cubs game. Now I need to do a little work this evening but thank God for work to do and the strength to do it.
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@chicagoan I am so grateful when folks like yourself post that you are doing well. It gives hope to those that are struggling and frankly, makes me smile!
@snow-drop Hope that you find a different MO. I am sorry that you have had such progression and that MO is not taking your health concerns as seriously as she should be.
@aprilgirl1 OH your trip sounds fabulous. Good for you throwing caution to the wind and enjoying friends and family and a good sporting event, too.
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Chicagoan. My hair has always been stick straight, baby fine, and lots of it. Lately I have been turning gray and losing more then in the past.
I dont know if I have shared that my scan at the beginning of the month showed no evidence of cancer. I felt bad sharing it because many people are not and are dealing with progression. It has been hard over the last 7 months just adjusting to having stage 4 cancer. What is even harder which surprises me is I was finally told I could go ahead and schedule knee surgery which was scheduled fornlater in January the same month I was diagnosed stage 4 and had to be cancelled. I am looking forward to being able to walk without pain but I keeps playing the what if game with cancer. I want to be excited but I am afraid to be excited.
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Brutersmom-That's fantastic news about being NEAD! Getting the knee surgery should improve your quality of life.
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Thanks Chicgoan. I am always exhausted. I feel like the knee pain is half the issue. It just wears me down some days.
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I’m playing catchup again with the posts. I hope I don’t miss anyone.
Sf-cakes, thank you. I’m able to swallow soft foods but haven’t tried any pills bigger than my Arimidex. At least my weight is stable. I have a motility study next week and another endoscopy in November.
Brutersmom, I did see the pulmonologist and he is concerned about the new developments, but I told him my cough was better and he agreed to wait until my next CT scan at the end of November to decide if we need to test further. The consensus is that it may be related to aspiration. He said that if he continues to see the opacities and the tree-in-bud nodules on my next scan, he’ll “insist” on a pulmonary lavage. I’m fine with that. I have new rib pain, but it feels like a pulled muscle. Maybe from coughing? Who knows?
I hope everyone is having a decent Sunday. We’re heading back to San Diego today after visiting my dad in the desert. Temps are nice here. Low to mid 90s. Better than 115!
Carol
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Sunshine99 is your tree in bud in the upper or lower half of the lung?
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Brutersmom, the latest report read,
Again demonstrated are faint groundglass opacities in the right lung apex. There is a new cluster or tree-in-bud nodules in the right middle lobe. These findings are likely postinfectious.
Again demonstrated is circumferential thickening of the mid and distal esophagus with patulous appearance of the proximal esophagus.
Enhancing nodule in the proximal duodenum measures 10 mm, similar to the prior. Correlation with endoscopy may be warranted.
Multifocal osseous metastatic disease again demonstrated, similar to the prior study.
That's the latest.
Carol
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I was just curious. Mine is in he upper left lobe but nothing else was really found. The radiologist made no other comments. Groundglass often is seen in some type of infiction so it sounds like may be an infection.
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So I got my labs today. Last month with an extra 3 days off due to vacation my neutrophils were. 1.6. Today after 7 days they were 9.6. So close. Our agreement was if it was over one I could just start. .96 is so close but I have really been dragging the last 2 weeks. I called to see what is suggested. I feel like I should just go to 10 days off maybe 14. I am 75mg and my neutrophils still drop below 1.
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brutersmom, it's frustrating to be close to that magic number but not there. I hope it comes up enough to start the Ibrance again.
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Sunshine99. I suspect that I might be up after 10 days. I am at 9 days and I notice during my work out that today I did not get as out of breath. This is not the first time I have seen significant changes at the 9 or 10 day mark when I have taken 2 weeks off. I have been googling alternative dosing. A couple of people said they are doing some alternative dosing on another site. 5 days on 2or 3 days off and not hitting stage 3 or 4 Neutropenia any more. It looks like this may be an alternative for people like me who need that two week break. It is showing a longer median time period before progression then 3 weeks on and 2 weeks of. Going to talk to my oncologist about it.
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brutersmom, it will be interesting to see what my bloodwork numbers are next month after being off the Ibrance since July. I had the bad reaction on 7/8, tried again on the 28th, and haven't taken it since then.
I was coughing again last night. Not bad, but it was the loose cough again. Ribs still hurt in the same spot on the right side. I need to look back and see how long it's been. I'm trying to convince myself it's just a pulled muscle and that it will get better.
I'll be interested to hear what your MO says about your dosing schedule.
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Sunshine99 I also found another study today that was 2 weeks on one week off. The more I read and hear from people in my FB group the more covinced I am that that one of these to is a better choice then 3 on 2 off.
Did you have radiation on the right side. Ever since radiation I had radiation on my right side whenever I cough a lot or move the wrong way, I get what feels like me an aching rib. Sure hope your numbers stay down until they figure out whatbis wrong.
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Anyone on Ibrance suffer hearing loss and or tinnitus?
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I have had it for a while not new.
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brutersmom, "they" always ask me about radiation, but the only radiation I had was to my hip, L-spine and femur. I'm starting to cough again, yuck. My ribs are really sore on the right side, unless it's just a pulled muscle.
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@snow-drop- how's it going? I think you switched to a new onc?
@Sf-cakes - I read somewhere that you had stable scans, awesome news!
Brutersmom- I am so happy that your scans are nead AND can have your knee surgery. I agree with Chicagoan that the knee replacement will improve your quality of life. Regarding Anc levels on day 28 Ibrance. I have an agreement with my onc that i can restart my Ibrance if my anc is above .80 , because I have not had an infection due to low anc in the 4 years that I have been on Ibrance. On 125mg Ibrance my anc went as low as .60 once or twice. SF-Cakes was hospitalized due to low anc high fevers from Ibrance so can be a serious situation to have our anc go low. I am on 75 mg (for 3 years ) and have not had it dip below .80 on 75 mg Ibrance.
Sunshine99 - I am so sorry your cough is starting up again. I know this has to be so frustrating and scary. Keep us posted.
@Irishlove - in the summer of 2019 (leading up to my stage IV dx) I had 3 unusual symptoms, all on the left side of my neck to temple. Left ear tinnitus is one of the first symptoms I noticed. ENT exam showed nothing. I contribute it to nerve issues/damage from cancer filled left side superclavical lymph nodes which eventually paralyzed my left vocal cord. Vocal cord resolved after 5 months on fulvestrant/Ibrance but the tinnitus has stayed. Like Brutersmom, I have tinnitus but it started before these meds. I've learned to live with it. It bothered me most at night (when it is quiet) so I use white noise to go to sleep which works well.
Neutrophils (ANC): I went in for my fulvestrant injections and bloodwork on 9/25. This was a week late due to my travels (oncologist said it was ok ). My ANC was 2.25! I don't think it has been this high ever in the almost 4 years I have been on Ibrance. I should start an excel spreadsheet like Sunshine99 :) Sunshine, yes - I remember Lotus 123 and some of the crazy codes we had to memorize! I sure do love excel.
Enjoy the last day of September ! My dog's 10th birthday was yesterday so we are making a special dog cake for him:)
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Sunshine99. Yuck for the cough. My cough has been getting worse but I have allergies and post nasal drip. Is it possible you damage some cartridge from coughing. That might not show up on a ct scan or xray. It would probably require an MRI. This disease is a real challenge sometimes.
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Aprilgirl1. I am on 75mg. Based on past history, if I don't start at 1.5 or higher next month will be even worse. It seems I am quick to drop and slow to come up. Each month gets lower. Monday I have to go for another blood test. Fingers crossed it is up over 1.5 or next month will be even more challenging if I follow my normal pattern.last month I started 75 mg and had an extra 4 days off and I was 1.6. No issue there even that number I did not make it back up to 1. At first he wasn't to concerned but now that I have an established pattern wants me over 1 before I start the next cycle. Some time I feel like 3 weeks is to much for my body. That is why I am leaning toward 2 on 1 off. This combo seems to have worked so I am not sure I want to switch.
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Dear all, thank you so much for your support and kind words. I have transferred to a new clinic and established with a new MO. I have started Elacestrant which is relatively new and has questionable efficacy, but I am hopeful that I can stay on it for a long time. my liver biopsy is scheduled for mid October and I am nervous about what the results will be.
a piece of information I leaned from my new MO is that for those on hormonal therapy and CDK inhibitors, it's beneficial to measure hormone levels frequently. I guess this can help understand when the treatment is becoming less effective before progression happens. I hope this information can be helpful and all the best in getting more time with Ibrance.
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My right ear has 60% hearing loss and severe tinnitus, courtesy of MS attack 7 years ago. The left ear closed in June and was blamed on depression. My poor head just rattles and this affects my balance. I was hoping it was an eustachion tube problem that could be repaired. The only appt. I could get for a referral was an audiologist, so I'll take it and hope they listen to my concerns before fitting me for a hearing aide.
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