Ibrance (Palbociclib)
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Micmel, thanks for letting us know. I just read some of her last posts. I'm so glad she's home now, and will be praying for peace for her family
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Yes Jaylea, she is home now. Our Lord gave her the ultimate healing and took her to live with Him in His House.
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Micmel and other friends of DianaRose, I'm so sorry. She was a lovely person and I know she'll be missed. Every time I lose a friend I'm reminded that God knew how many days we each had before we got here. He doesn't ask a lot of us on this earth, just that we love others as He has loved us. That's what we do here on this thread. It's our job. DianaRose did her job well and now she gets to live in complete comfort and peace. What an amazing plan even though we're left grieving.
I love each of you so very much,
PatGMc
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It is so sad to lose yet another sweet lovely lady that was Dianarose. She’s actually been on my mind a lot lately, almost as if I had a feeling her time here was coming to an end. I’m so sorry for you, Micmel and her other friends here. I pray you and her family can find comfort in knowing she is free of pain and resting in the arms of our Lord.
Love and prayers,
Faith (in the future).
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my deepest condolences to those that knew and loved Dianarose. Especially Micmel. I am so sad to hear about her passing. I also saw how much discomfort she expressed being in the last couple of months so I am glad that her spirit is now at peace. Lots of love to everyone 💜
Thank you to everyone who held me in their thoughts today. I had my bone scan this morning/afternoon and got a call right away from my MO (per my request to let me know the results ASAP) and amazingly, the MRI abnormal results showing metastasis was a fluke! The bone scan showed no new metastasis and I can stay on Ibrance and current line of therapies. I am SO relieved and utterly wiped out now. I came home and slept for two hours and now am back in bed again. Many hugs and gratitude to everyone on these boards and for your love and support!! It truly makes the hugest difference to have you all to “talk" to everyday. Love ❤️ and hugs 🤗 !!
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I too am sad to hear of the loss of Dianarose. She will be missed. Sounds like she had a good support group of friends here.
Philly, so happy for you to hear your good news! I understand about the emotional fatigue. I had a PET scan yesterday and am impatiently waiting for my results. My MO usually calls / emails me with the results after a couple of days so I need to wait another day or two.
In the meantime, I am surrounding all of you with love and prayers.
Chris
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Philly; I'm so happy for your results. I was thinking of you today and praying for the best results and this couldn't be better. Yahoo
IntoLight; Yes, the fatigue of waiting. I'll be thinking of you and hoping you hear very soon.
I am so sorry to hear of Dianarose and my sympathy to all of her friends and family. Over the years so many of our friends have passed. I often think of those I knew 15 years ago when I started this journey....and so many others since. They had wonderful life stories and all were taken far too soon. Prayers for them all....never forgotten.
Cathy
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What a mix of good and bad news as I check in today. Micmel and all who loved Dianarose - please know you have my prayers for comfort and peace. It is so sad to lose yet another of our sisters.
LovefromPhilly - YAY! It is absolutely exhausting to go through these fearful moments but I’m so happy to hear your news.
IntoLight - nice to see you... praying for you as you await your results.
Love to all and may dianarose Rest In Peace.
Lauren
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LovefromPhilly, I love any sentence that contains metastasis and fluke! Yay for you!
I promise to catch up on everybody's posts soon. I had my PET/CT and it's pretty stable after returning for 3 months to the regular schedule with 100mg Ibrance. One very tiny bit of uptake in a different spot. All the rest are the same. All treatment stays as-is. I do have to get an Echocardiogram tomorrow (my first) due to racing heart at my appointment Monday. Bummer. So I'll be 2 and a half years on IbranceArimidex/XGeva at the end of March. Metastatic 7 years. 25 years out from first BC diagnosis next week. I imagine the people at AFLAC rue the day they ever sold me a policy!
Love from PatGMc
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Peace and love, DianaRose, all this just has to stop, let it be soon...
Pat, Excellent scan,I'm surprised that you can be seven years mets and still on anti-estrogen therapies?! amazing..
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Cure-ous, not still....again! I took 6 rounds of Taxol/Carboplatin and achieved NED after the chest wall mets showed up. I took Femara for 18 months and it didn't agree with me. Lots of terrible side effects so I decided since I was still NED to just take my chances. (I retired and spent my time making art and grandmothering.) I stopped treatment and opted not to have scans unless something hurt. Finally, something hurt in the Fall of 2016, and I had the scan that showed widespread bone mets. Interestingly enough, the thing that hurt wasn't the bone mets, but arthritis. I have no regrets about any of it. When I started Ibrance with Arimidex, I added Turmeric and haven't had the extreme side effects the Femara caused.
I have a friend with bone mets who has been on Faslodex alone for 9 years!
Love from PatGMc
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Pat - you are so brave to go without through periods of “remission” and wait until something pops up. Its clearly working for you! I wonder if that becomes a future protocol when our disease moves from terminal to chronic - which for many it already is chronic... So happy about your scan
Jaycee - I just went back and read your post. That result sounds stable to me and I’m so glad you feel good about it. Happy for you!
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Philly, so glad about your news. So it WAS an artifact. Gotta love those.
I hate that it takes something like Dianarose's passing to get all my old buddies back here but I'm so glad to see you all.
Lauren, thank you so much for noticing my stable scan. When my MO walked into the exam room, the first thing she said was, "your scan was stable." Then, since she knows I want to hear it, she goes into all the details. I put all the numbers in my post and the stability gets lost. My scan was stable and I am not changing meds. That is the bottom line.
Pat, I'm glad you are back on Ibrance and "pretty stable." I guess I am pretty stable, too. Is that the same as "just a little progression?" I like pretty stable better. Hope we both stay there.
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Good morning all from Illinois. 60 degrees today with rain and thunder (thundering now as I sit at my computer) then in the teens tonight. That is Illinois for you !!!!
Snooky---Prayers for you and your change in treatment. You WILL stay on this thread even though you will be off Ibrance. We want to continue hearing from you. PM me anytime also.
DianaRose--- My sympathy to her family and friends.
LoveFromPhilly---Yey. Glad for the good news. Don't ya love the fatigue, though. The other day I had errands all day--banking, bills, stores, pharmacy, laundry. I was wiped out. Used to that type of day would have been no big deal.
Sorry if I forgot to mention anyone. I love you all and catch up on posts when I get a free moment.
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Pat, I forgot to ask. Why did you go back on 100 mg. after being on 75 mg. before? And how are the GI side effects this time? I hope they're better.
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I am sorry for the loss of a friend of yours!!!
I also want to tell that I got my PET results today...all clear...NED !! I just finished cycle 12...
So... either my liverlesions are something else that just dissapeared...or they are livermets and the Ibrance started to work!
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Anna-33, NED is great! Glad for your good news.
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Anna...hooray for the great news!
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I haven't posted for awhile. So sorry for the loss of good friends and happy for the good results others have had. It has been a very difficult month. My Dad, who is 85, but very active (just put a beautiful deck on the house this summer) just found out that his worsening back pain is due to metastatic prostate cancer. While in the hospital the past couple weeks he had a small stroke. He's recovering from the stroke and started treatment for the cancer. Another blow for him and our family last week was the death of his son in law, my sister's husband after a long illness. My poor sister is grieving her husband while trying to cope with what's happened to Dad. My scan will be coming up in a couple weeks and hopefully I'll be able to continue on this treatment as I've been caring for my parents. I know many others on this forum are coping with difficult circumstances too.
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Anna - yay!! NED is an awesome place to be!
Elena / wow - that a whole lot of stuff for one family to deal with. I’m amazed that your father out a deck on his house at 85! He sounds like an amazingly strong person. I wish you and your family well as you deal with all of this trauma. Hopefully your scans will bring some good news to your family!
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I'm so sad to hear of DianaRose, thanks Mel for letting us all know. Heartbreaking.
Happy to hear of good news for others. Stable scans are such great news; scans showing no active disease are wonderful too! I join the good scan crew and will try hard to wait 6 months for the next round. I got too nervous this last time since I had been the 3 month plan - I was able to make it to 4 months but then caved. Also, my blood clots seem to have resolved, thank goodness.
Hugs to all as we cry for the good news and the sad.
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Super happy for your news, Jen! I went 6 months for this last scan and now my onc says he wants to wait 9 months!! Yikes!
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just wanted to drop by and give some love to everyone who is here and lurking here. I feel so grateful to know you are all out there while I negotiate the ever ominous thoughts of having this a very isolating diagnosis.
Jaycee totally an artifact!! Perfect word!! A sclerotic lesion - an ancient fossil from another lifetime, which offers future explorers more to the story of my life!
Love and hugs to all on this wintry Friday night!
Philly
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What is the recommended type of scan and time interval for MBC? I get a CT scan every 3-4 months, but wonder if a MRI or PET scan might be better (even if my insurance doesn't cover them). Also, what usually comes after letrozole/Ibrance stops working? Thanks everyone.0
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Hi polemonium
Every onc has different protocols for testing and then insurance company approval. My Dr uses Pet scans and Mri depending on PET results. Usually every 4 months unless I have pain.
I’m sure someone will chime in here but the next treatment depends on where progression is found and what type positive or negative.
Tanya
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jensgotthis, good scans and resolved blood clots. ✔ Good report indeed.
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Hi all - I have a low-priority hair question. I know how unimportant this is relative to those dealing with pain and progression, but I'm just looking to compare notes. I still work full time in a demanding job and this is impacting my every day life.
My hair has thinned about 40~50 percent. It seems to have fallen out evenly all over my head, as I have no ultra thin or bald spots. Thankfully I started with thick hair.
When I had chemo the first time, my poker straight hair came back in ringlets. Over time, it went back to its original texture and just slightly wavy.
So it seems my hair continues to grow back where it fell out and then new stuff falls out. So now my shoulder length hair is much thicker at the crown and then get scraggly at the ends. So I find I'm getting it cut more often.
The strange thing is, it's once again regrowing curly so the new stuff - some of which has reached a couple inches has strange bends all over, while the rest is quite straight. I straighten the 'roots' but it doesn't comply and it just seems really time consuming to deal with.
Does anyone else have this phenomenon going on with their hair?
Here's a picture of my normal hair before Ibrance. I am also posting a pic from when my early stage chemo hair grew back so you can see how crazy curly it was.
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Lauren, my hair is very much acting like when it came back after A/C + T. For the first 4 months on I/L, everything was normal and I thought I'd skate on that particular SE. But no, it just took that long to present itself. I always had thin and straight hair, but lots of it. Now it's wavy and thinning, but there's enough of it that I don't worry too much about it. But with a demanding job, I could see where it might be an issue.
Polemonium, I had one PET/CT at dx, then no more PET's. My MO says they can be fussy and, being on treatment, it can pick up healing as uptake. So I get a CT and bone scan every 3 months. If I was more stable, we would go longer. As to next line treatment, it depends on what kind of progression you're facing. More of what you already have would be treated different from a brand new organ being involved.
Jens, so glad your blood clots resolved.
Tanya, always good to see your posts.
I'm off to Maui tomorrow in search of warm beaches, cool drinks, and soul-filling sunsets.
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Lauren, I never had "chemo" so I have nothing to compare, but mine has thinned a great deal all over and is curly. But after almost 3 years, there is still enough of it to cover. Not nearly as thick as yours, but it passes.
Jaylea, I hope you hit warm weather. The weather news says Hawaii is in the path of a cold front. The next 7 days shows from 58 - 60 for a high here in San Diego--still cold for us! I pray the rest of you stay safe and warm in this unusually cold winter.
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Lauren-You are really fortunate-you look great with both straight and curly hair! I had thick, wavy hair. Now with I/L it is much thinner and straighter. I miss my old hair but my new hair is a lot quicker to wash and style. I feel blessed to still have hair at this point!
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