Ibrance (Palbociclib)
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Rk2020, thanks. I’m on 125 mg; this is my fourth cycle and I haven’t had any side effects until now. My bottom molars hit this sore any time I move my tongue, so it’s constantly irritated. It’s been about a week. I’ve been swishing with salt water, but haven’t tried anything else. What eventually worked to heal yours?
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li77 - I tried salt water, baking soda with water and an l-glutamine swish and swallow without success although these help many. I finally found relief miraculously fast after just one night of using a canker cover made by Dentemp. These are a bit difficult to place but melt into a blob of goop that protects your sore. These are different then the DenTek cancer covers which are more like a band-aide for your sore. The DenTek are easier to place but I have found them to be less effective. The Dentemp covers were recommended to me by someone on this thread so that’s a second testimonial. I hope you find something that works for you.
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Hi li77. Just wanted to share what's worked for me. I started getting sores as an SE almost every month starting around cycle #12 (I'm on #20). I started eating Greek yogurt a couple of months ago (as suggested by a few people on here) and I haven't had one since then. Someone also suggested rinsing with Colgate Peroxyl, which worked for me only if it's just starting out. Like RK2020, I've also used DenTek mostly to cover a sore when eating so it doesn't get irritated but these don't stay on too long. I had a really bad one several months ago and my NP wrote a prescription for Clobetasol ointment that worked within two days (but it's a steroid and shouldn't be used frequently). Hope you find something that works.
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li77, many people get mouth sores while in chemo. That led to a prescription rinse called "Magic Mouthwash." It's equal parts benedryl, maalox, and lidocaine. It works really well for most people. Ask you MO for a prescription.
Thanks for pocket duty, RK2020.
Ann
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I notice a lot of people are writing about insomnia. I found that letrozole alone made me very sensitive to caffeine. I had been a caffeine addict for over 50 years but I kicked the habit. Now I drink decaf. When I have the occasional diet coke I can feel it but I had no further problems with insomnia. It is worth trying and I say this as a former caffeine junky!
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rk2020, smallmoments, and anntop, thank you for all of the suggestions. I've ordered the Dentemp covers, I will definitely try greek yogurt (I have a new four pack in the fridge), and I will ask my MO about the magic mouthwash when I see her on Friday. I appreciate the help, because this is miserable!
Chicagoan, I only drink one (sometimes two) cups of coffee when I wake up, but I need them to feel human! I'm not sure if I can do it! I do have a pet scan tomorrow morning, which means no coffee for me tomorrow (I'm already sensitive to caffeine, so I don't ever drink it after noon), so if I actually get some sleep tomorrow night, I may actually try to go without caffeine.
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Ibrance gave me sores too and I knew if I got one that my neutrophils were low and I would be delayed. Colgate Peroxyl was my wash of choice and at least managed things so I could eat, but I tended to get them in the corner of my mouth for some reason.
About insomnia - I still have it even though Im off the Ibrance, but still on the letrozole. I think its a meno side effect and I too only drink a single cup of coffee in the morning (gotta get the brain in gear!) and never anything like tea or soda after noon. Ive tried cutting out the coffee and it didn't really help, what did help was light weight lifting exercises, so I try to make sure I do short workouts with handweights every day. I also found that when I wasn't mentally challenged enough I had more problems so I found a side project to work on and a new direction at work and that seems to have helped a lot too. Also not focusing on OMG ITS INSOMNIA - I reframed it as my sleep patterns have changed a bit but that doesnt mean I cant go back to sleep after the 3am cat tap dance and the 5am bathroom call.
But I will totally own that oh yeah, there are some nights where you wake up at 4am ready to almost go for the day and cant get back to sleep. At that point I read a book (no phone) until I feel sleepy again. Sometimes it takes an hour but eventually I get there. MO wants to know about sleep issues and they tried me on mirtazapine but that gave me sleep paralysis instead and was way too foggy in the head all day.
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Sad news ladies. I read on the liver mets thread that ShetlandPony passed away on July 16. She hasn’t posted on this thread in the past 9 months but many wil remember her sweet support. May she Rest In Peace.
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Regarding the mouth sores, I found that Orajel Mouth Sores Rinse works wonders me.
I'm so sorry to hear about Shetland Pony. May she rest in peace.
I slept better last night. Fell asleep with not much trouble and woke up just once at around 2:50 am. Went back to sleep. The difference last night was that I ate some carbs at around 6:30 pm. I had a bag of what my DS calls "Skinny Bitch" popcorn. It's actually called Skinny Girl and I like the Lime and Sea Salt version. I've not been intentionally limiting carbs, but I think I've been eating less of them since I began intermittent fasting. Hopefully I can continue this sleep trend. I was starting to get a little, shall we say, "pissy-pants?"
Carol
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I hope ShetlandPony was at peace and in no pain in her last moments. She was active in these boards when I first started reading during the early days of my diagnosis.
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I didn't "know" ShetlandPony because I'm relatively new here, but I hope that she knew that she touched so many people, and I hope that she found peace. I hate this disease.
I got some unexpectedly awesome news today at my appointment. My brain MRI was normal, CA 15-30 is 38, nothing lighting up on PET scan, bones healing, primary tumor has shrunk so much I can barely feel it. My MO used the words "no active disease," and said that this was the best-case scenario. I am so thankful to be responding to treatment this quickly.
I hope everyone has a fantastic weekend! Happy Friday!
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li-77, That’s awesome news!!! I don’t thinks there’s any better news you could get!? 😁
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li77, I’m so happy for you. What awesome news. Woot!
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li77 - Yahoo! Celebrate!
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li77-Fantastic!
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li77, great news!
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Thanks for sharing good news, li77!
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I love hearing good news!
Re the hair discussion, I did have lots in my comb each morning at first. I now use baby shampoo and not very often. The meds are so drying that if I put dry shampoo in on day 3, I need to remember to wash my hair at some point!
Had my bloods on Thursday for my new schedule. ANC still too low at 800. I took only 18 days of Ibrance (75) and was off for 7 before the draw. So staying off until Monday and will do more bloods. Hopefully the 18 days on/10 days off might work for me. (damn, I wish the tourists would get it that this zip code has a 7 day rate of 482/100k! What does it hurt to mask up in air-conditioned public transportation?!!!!! You might not care, but I need to travel to the cancer center somehow!)
Happy Friday!
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Li77 - awesome news! Congratulations on fantastic news!
Anntop - hope your scans were fine and you felt us in your pocket! Report back when you have a minute.
Cathywh59 - sorry you joined us but you will find great support here. I am so happy that your first scans are good and show significant improvement! That is great:) Thanks for the Chiacurls recommendation.
malebreastc - sorry you had covid but I am happy you got through it.
ShetlandPony - really sad news. She was a great support to me and many others. May she rest in peace.
DanceMom - I hear you on the masks. Sorry about your low white count, I know that gets very frustrating!
I think the last time I posted was after I was seriously exposed (2 work days in a tiny office 2 feet from my co-worker who tested positive). I did not come down with covid and didn't test postive. Even though I was in my last week of Ibrance cycle so my WBC should have been on the low side? This virus is a mystery to me. I am thankful I didn't get, or haven't had it, yet.
Hope you are all doing ok and enjoy the weekend!
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RIP, Shetland Pony. When I first was diagnosed with MBC in July 2021 and found out I'd be on Ibrance, I read this discussion thread from page 1 forward. She was so helpful to so many. She'll be missed.
Li77, congratulations on your awesome news!
I had my PET on July 22, but didn't get my results until yesterday, the 26th. And from a new doctor at that. (He replaced my just retired MO.) Just to recap, I had Stage 2B IDC diagnosed in November 2011. Then I was diagnosed with 2B HGS ovarian cancer in February 2020. As follow up for the OVC, I had a CT scan last July that picked up a bone met on my sternum, which proved to be a recurrence of breast cancer. That was followed by a PET which showed hypermetabolic activity in the bone met plus 2 lymph nodes -- mediastinal and right hilar.
I got very good news! The new PET showed that that the "previously identified hypermetabolic uptake within the sternum has resolved..." and the two lymph nodes have resolved too. There was no evidence of metastatic disease seen between the base of my skull to mid-thigh. 10 cycles of Ibrance, anastrozole, and some major lifestyle changes seem to be working. Just for the record, I also did 10 weeks of 2x a week IV infusions of high dose (50 grams) Vitamin C -- which was recommended by my OVC oncologist, who is also an integrative oncologist -- and I added a number of supplements such as berberine and melatonin for metabolic impact. I know I'm not cured, but I'll be keeping on my meds and my new lifestyle. My hope is for a long-term stable remission, if not a true cure.
Thank you Aprilgirl, RK2020, and others who were in my pocket. I'm here for pocket duty for anyone with scans coming up.
Regarding the new doctor, he's probably the age of my son (37), but he was very attentive. We spent about 30 minutes together, so he could get to know me. And he's open to integrative oncology, to my relief. I like him, but then again, he did deliver good news.
My best to you all!
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AnnTop - awesome news! So happy for you both on clear scans and on the new oncologist. It is so important to me to trust and know my oncologist hears me and is willing to think outside the box. Personally, I was randomly assigned to my current oncologist who I have grown to love and was also randomly assigned to my first oncolgist back in 2008 when I was stage 1 and completed all the treatment. She eventually retired and I was transitioned to the "wellness group" as Seatlle Cancer Care Alliance (which is a top rated NCI Cancer Center ) told me that at 7 years post stage 1 with surgery, chemo, radiation, 7 years of femara my recurrence risk WAS SO LOW I was in good hands with their wellness ctr and annual mammograms. Jokes on....me I guess:/
I would love to hear your opinions on something and I apologize in advance for the length of my question but you need the background info.
My current onc is on medical leave and it's unknown if she is coming back. I was assigned a temporary onc who seemed good when I met her in 6/22 for my petscan review (which was clear so of course she seemed upbeat!). However, this temp. onc is retiring in October.UGH. I had my blood work and fulvestrant injections early monday and a telemed with my onc. NP who I really like yesterday at 8am. I am concerned about my oncologist and of course they aren't telling me why she's on medical leave. Not sure if she is coming back. I asked the NP should I switch docs now? Do I have choices? Makes me nervous. NP told me she was to meet with the director of the dept today and has a short list of patients that she would like to continue their case/care and I am on this list. She asked I wanted to continue with her. If so, she would recommend the onc. when they tell her who she will be assigned to work for. I really like this NP, she's smart and upbeat which is important to me. She also said it's possible my MO will come back but 1/2 time with a smaller caseload. Is is good for me to have care with a 1/2 time MO and full time NP at a large cancer center? This is a lot for me to think about. I am relieved that I am doing well on first line tx / NED but we all know that it can turn on a dime. I need to know if that happens my MO team will immediately react. There are other cancer centers in Seattle I could go to but this is the top one in Seattle. It also has a small clinic I can drive to /close to me that I can go for fulvestrant and blood work 2 months out of 3, with scans and in person MO meeting in Seattle in the 3rd month. This is really helpful for me since I work/ live on an island so the trip to the Seattle Cancer Center takes me almost all day and includes a ferry ride (which is beautiful!). The other cancer centers don't have the option of a small clinic near me.
Here are my immediate choices....
A) stick with NP and take her recommendation for new onc when the time comes
ask for a new onc at SCCA which means I will not work with my NP who I am attached to and trustC) change cancer centers which I am reluctant to do as this new appt protocol with local blood work/fulvestrant is super convenient and it is the only NCI locally.
I am not going to worry about my MO coming back part time right now because I have a feeling she will come back full-time or just come back doing research p/t. She is in her mid 40's and has a 14 year old. Whatever is happening, she needs to focus on herself and her family.
I know I have PTSD /anger from the fight I had to get seen when I started having concerns in 2019 due to "standard of care" for stage 1 patients 11 years post treatment. I do NOT want to be lost in the shuffle since I am "stable" and have no real concerns besides....still stage IV! I guess I am concerned that if I am not a squeaky wheel, I will get whatever is left which won't be the best.
Thank you for anyone who has the patience to read all that and comment:)
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AnnTop-Congrats on the great news!
Aprilgirl-Here's my 2 cents: for now I would wait and see if your MO comes back before making any other commitment. I would definitely not want an NP to be my primary contact. I have found there is a big difference in knowledge between MO's and NP's and it seems weird she was almost "hustling" you to be on her list. Would also stay at the top cancer center-that too seems to make a big difference.
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Anntop - I’m so happy to hear your good news!
Aprilgirl - I’d go with option A. If you don’t like your NPs new MO, you can always switch them. And if you find the NCI facility convenient, I wouldn’t move from there.
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AprilGirl, I would go with option A as well, at least for the next few months. It still leaves options B & C open.
I was struck by your being told 7 years post Stage 1 that your risk was so low just do the wellness center. In May 2021, 9 1/2 years post Stage 2 BC, my MO told me the same thing -- that my BC was essentially cured. In late July 2021 I found myself calling him to say the BC had recurred. If it weren't for a "routine" CT scan as a follow up for my ovarian cancer that caught the small met on my sternum, I wonder how long my BC might have advanced before I had any symptoms.
Somewhere last year I read about different types of BC cancer cells, including one they referred to as smoldering -- very slow growing cells that can hang out for years before causing any recurrence. You and I seem to fall into that category. Like you, despite good scans, I'm looking over my shoulder. But I'd rather have smolderers that firebrands.
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Anntop, I completely agree with you! I was also naive to think that if I had a recurrence it would start in breast tissue so mammograms gave me a false sense of security. Beautifully clear mammograms. I was node negative (obviously as stage 1).. I also had a bilateral breast reduction that took 30-40 % of my breast tissue after chemotherapy was completed but before radiation. No remaining cells were detected as they put all that tissue through pathology (I was way too busty so a reduction was something I had wanted for years and I am still a D cup, LORD help me). UGH. Clearly, a few smoldering cells sneaked out beyond the breast and set up shop.
Chicagoan, RK2020 and Anntop, thanks for your opinions. I agree. Stay the course!
Sad news about BevJen. She was such a great support to me when I was first dx stage IV and started Ibrance. Rest in peace BevJen. You were a dynamo, I loved reading about your accomplishments. Love and prayers sent to her family and friends.
I appreciate you all and hope everyone is doing well. Seattle has a heat wave and it is kicking my butt but I think it is moving on;)
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Aprilgirl, sorry I missed your question about what to do re: your MO! I would encourage you to stay with that Top Cancer Center, and see if your MO does indeed come back. I think being connected to a medical center that has many docs and is very aware of current research is important. I don't want you lost in the shuffle, either, given just how hard you had to advocate for yourself when you knew something was wrong. I'm also hoping the heat up there calms down for you, that is not weather that Seattle knows what to do with!
I had a low ANC recently and delayed my next ibrance cycle by a week. Also slightly anemic, and feel very very tired. Pharmacist let me know that iron from animal products is easier for the body to absorb, so I asked her if she was telling me to eat a hamburger? She laughed. Then I ordered a very delicious hamburger from a restaurant here in the city. Scrumptious. And, apparently, good for me!
Love to everyone here ❤️
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Just popping in here to add to the discussion on recurrence - a few days ago I was on another forum for BC and this issue came up about how to tell if its come back and I had to clarify for people that MBC isnt some linear process. Its not like its breast -> lymph -> distant, especially if youve already had BC. That the chemo is a systemic thing to try and catch the cancer before it sets up shop somewhere and grows and that often it works, sometimes it doesn't because not all cancer cells are the same, etc. Several of the women in the thread hadn't even been told at treatment discharge what signs to look out for that meant mets recurrence and when to contact an onc.
I dont know, maybe its a subset of toxic positivity in a way. For some women they really are cured but you cant know until someone dies of something else. Or maybe its a way to manage numbers of patients coming back for anxiety scanning of every ache and pain. I dont know, but I would think for at least high risk of recurrence women there would be some sort of educational approach provided and a risk assessment score added to their file to flag for future checks.
Aprilgirl - I had a reduction at 22. The damn things regrew in the 20 years to my diagnosis, so I dunno, maybe Im just a champ at growing breast tissue :P
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SondraF- you are preaching to the choir ! It is not a linear disease at all. I have had many people tell me (unsolicited) if Ihad a mastectomy back in 2008 I would not have had this progression . Nope . Never came back in my breast tissue! I've been thinking about you in the heatwave that London was experiencing and hope it's over . We have a heatwave in Seattle and it's not pleasant .
SF cakes - sorry you have low ANC and anemia. Your burger sounds like a necessary and delicious rx. Where did you get it ? SF has so many amazing cafes and restaurants ! August and September are so beautiful where you live. Honestly , it's always beautiful in SF , even when foggy
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I had a mastectomy - it came back. I was part of the TayloRx Study. Low to mid OncoType score and was randomized to get chemo (for which I was actually thankful.) Study now shows that low to mid OncoType (or whatever the number is) does NOT benefit from chemo. I did get chemo and the cancer still came back.
I'm still glad I had chemo the first time, or I'd probably be playing the blame-game about all the things I didn't do. It's a crapshoot. Some of us have a recurrence and some of us don't. Both times, the lump was found by me. Both times, I had a great PCP who listened to me, sent me for an US, et voila! First Stage II, now Stage IV. It happens.
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Sunshine99- I totally agree it's a crapshoot . I'm glad I did chemo and rads and years on femara so I know I did all I could at the time .
Thankful for Ibrance / fulvestrant now, and for all of you who share and support .
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