Ibrance (Palbociclib)
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Janet...Yes! Thanks for all that info. I just got something in the mail from PAN. I haven't read it thoroughly yet. Nice that these foundations are available. I wouldn't know where to begin to apply. There must be an "angel" working at the specialty pharmacy that handles everything.
cchilders...I think you will find that the fatigue will be less with each round...I'm on round 5. At least, I'm finding that to be so. I am definitely having the hair thinning! I don't have nice, thick hair -- so this is a bummer! I had nausea in the beginning, but that's non-existent now. I am anemic, as well. I just had a bone marrow biopsy last Thursday. I will see the oncologist this Thursday to discuss the results. Not sure what to expect. I've been anemic since my first diagnosis of BC and chemo/radiation in 2010. So, I'm praying for an easy fix with whatever I'm facing.
Nancy....I hope the combination does wonders for you. Please keep us posted.
Wishing all a great day...I'm off to vote!
Hope
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Nancy, I wish you the best on the new combo.
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Cchilders I had a full hysterectomy June 2, 2017. I thought I was going to have my ovaries laparoscopic removal. I remember the nurse giving me the prep for a hysterectomy and then she said oh you don't have to do all of this prep, which was cleaning out with miralax and citrates etc. I decided when I went home that I would do the big prep for the hysterectomy just in case. Thank God I followed that intuition because when my ONC got inside the growth on my ovary was too large to come out the laparo incision.
The Ibrance I didn't start until after the hysterectomy. It made me a little tired but the thing I focused on was the healing from the major surgery. After the surgery I was on Ibrance, faslodex, penicillin, and a daily blood thinner shot.
My mouth had a funny taste and I felt a little nausea.
Take Care Best of Everything in your journey
Tanya
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nbnotes/Nancy- I also wish you the best with this new treatment. What made this the best next choice for you? I don't know much about everolimus/Afinitor other than it is a kinase inhibitor.
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nbnotes, good luck with everolimus - I just came from there (Afinitor and Aromasine), it seemed to work for one breast but not for the other. It was rough at the beginning but eventually my body got used to it and there were no more side effects. Good luck !
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Nbnotes, best of luck with the Everolimus-
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Nbnotes, I was on A/A for 4 years. Rough at first but then became predictable and manageable. I was much more tired on it than I/F. A lot skinnier too! Good luck!
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nbnotes, we wish you nothing but good things on your new medicine. Keep coming back here and letting us know how you're doing. We're all on the same path...keeping MBC in line until those individually designed immunotherapies cure us. We know it has happened already and the researchers are getting better and better at it. I will pray for you and everyone here as we live our lives the best we can until that day!
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Nbnotes Sending positive thoughts as you start the new meds. Mair
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Nbnotes, also sending good thoughts that this treatment works well for a long time.
I have some good news to share. My sigmoidoscopy today found nothing. Yea! How can something show on a PET scan and not to the naked eye? The Dr. says it could be a false positive so ladies remember that when you have a scary thing show up on a PET. It's not always bad news but it sure is scary. I'm really grateful for the good news but kinda mad I had to endure that awful prep. Not to mention the anxiety for DH and I. I'm going to believe the lung CT will also not be a cause for concern. It sure would be nice to get off the cancer scanxiety train.
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Faith, I'm thrilled for you! It's such a good lesson in not letting these scans run our lives. Since our bodies have betrayed us in the past, we assume that everything is "something" when most often it's not. I'm going to think that about your lung and look forward to your peace of mind, my friend.
Love from Pat
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Faith, such wonderful news! Sending hugs your way-
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Congratulations to Faith.
I had bad news about my last PET scan today.
I join the club.0 -
cchilders79....I'm on my ninth cycle of Letrozole and Ibrance. I think your oncologist has fairly well covered it except for possible mouth ulcers/sore gums/cold sores as your neutrophil count goes down in the second half of the cycle, along with the fatigue.
I found the fatigue fairly confronting in the beginning but I think you get used to walking around in a fog of fatigue after a few months of it. I'm told I'll be taking this combination, as long as it keeps working, for the rest of my life so I figure I might as well get used to it. It's a bit like when you have a new baby and are up half the night feeding....it's that kind of fatigue for me. There are times when I can keep going but at a lower pace and times when I have to give into it and rest up. You'll find the balance and how it suits you in time.
I take Ondansetron if I have any nausea but unless I eat rich or spicy food that isn't a real issue.
Letrozole also causes dry and thinning hair. My hair has thinned out but not in patches, just generally, so it doesn't show too much. My hairdresser layers it up, although I can still keep it at about jaw length. I don't like it too short but I'll do whatever I have to do. I use a lot of Moroccanoil and other conditioners and treatments on my hair but it's still very dry but I'm grateful that I still have hair.
I hope this is of some help to you. Good luck, lots of hugs
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Faith.....great news! I'm so happy for you. What a relief that must be.
I'm positive your lung scan will be equally rewarding....sending lots of vibes and hugs and prayers.
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Good morning...
Faith...What comforting news for you!! I had asked my onco about PET scans since I've never had one...only nuclear scans and CT's. He said that PET scans are often not reliable; however, all scans can produce false-positives and false-negatives. I guess he thinks CT's are more reliable. Something for all of us to remember with any scan we have...they can be wrong. Sending good vibes for your lung scan.
Amarantha...I am so sorry for what you are going through at this time. It's bad enough dealing with the cancer, let alone dealing with doctors who seem to be unconcerned about your issues. No one should have to deal with this...and then to have to be concerned about the consequences "if" you change docs. Just unnecessary worry.
Leapfrog...I'm so fortunate to have avoided the mouth sores at this point (on round 5)...I do make sure to rinse with salt water after each meal - maybe, that is the secret weapon. My fatigue is nothing like yours. I do try to take a nap during the day, but it only lasts about 20 minutes...if that! I'm up around 6:30 every morning and go to bed about 11:30 and sleep fairly well, except for getting up to go to the bathroom a couple times throughout the night.
My onco said the same thing...I will be on this combo for the rest of my life or until it stops working. My hair is like yours...just thinning all over - no patches. I feel like I could make Barbie doll wigs with the hair in my brush! My hair dresser used a product from Redken -- Stay High 18. It's costly, but I do find it helps bulk up the strands and it does make your hair shiny! It was $24.00 at the beauty shop, but I found it on Amazon for $16.00. It will last a long time -- you use very little.Wishing all a very good day and looking forward to hearing more "happy" results. I see my onco tomorrow to discuss the bone marrow biopsy results....I hope I can report "happy" news.
Hope
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Thanks Hope...you wouldn't believe the things I do to try to avoid the mouth sores! I rinse my mouth with non alcohol mouth wash after each meal, then before bed I rinse with bi-carb soda (I think you call it baking soda in the US; it's a white powder) in warm water, followed by warm salty water, then I use Gelclair, recommended by my oncologist!! Perhaps I'll exchange the mouth wash for salt after meals. I don't know whether the fatigue is exacerbated by the fact that I was seriously ill by the time I was diagnosed Stage IV de novo with bone mets. I'd been very ill for at least four years yet nothing showed up on tests. I was actually at the point where I was unable to get out of bed and we had bought a wheel chair for me to at least get up to eat meals. I don't want to sound dramatic but I honestly think I didn't have long and, if I hadn't discovered the second lump, I might not be here now. I really felt that I was slipping away. That DOES sound dramatic! and not like me at all but I think it could help some of the newbies to Ibrance to know that perhaps the fatigue needn't be as bad as mine. It just occurred to me when I read your post. I'll definitely look into the Redken product. I use volumising shampoo and conditioner but if something will help, i'll try it.
Good luck with your bone marrow results. I'll be praying for you and thinking of you
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Well...I was hoping to send some "happy" news...but, my onco just called to inform me that there are cancer cells in my bone marrow which accounts for my low blood counts. I will have to go back on chemo....Taxol....JOY!!! NOT!!
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Nonahope-So sorry to hear your news. Here's hoping the taxol does the trick to take out those cancer cells.
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I've gotten bad news about my PET/ CT scan. My Oncologist says my bone mets have spread. They are even in my shins which is very unusual. So, it's time to say goodbye to Ibrance. She wants me to consider Xeloda or anothe cdk4/6 inhibitor. Or look at a trial. So many decisions to make. I will also be getting packed RBC to help with my anemia. Goodbye ladies ! Be welk
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JFV...I am so sorry. Seems today is the day for bad news. Best we can do is "hang in there"....!!
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My heart hurts from all of the sad news lately. From Texas to the dear pink ladies in this thread: Faith, Nonahope, and Jfv, I am praying for special peace for you today. Our battles just seem to wage on! I see my Onc next week for a "routine" visit but hope she will order a scan since I can't lift anything without pain in my right arm. This would have been the first time going 6 months instead of 3 between scans so maybe I am just being a nervous Nellie!
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JFV- so sorry to hear about your progression. I wouldn't even know if the cancer was in my shins-the PET stops mid thigh. Interesting choice about a different CDK4/6 inhibitor vs xeloda. I hope you will let us know how you are doing on bone mets thread. The transfusion will make you feel much better!
Nonahope- Sorry to hear about your bone marrow. My marrow was heavily packed with breast cancer cells which led to severe anemia-the Ibrance has cleared most of that away- I'm hoping that the Taxol clears that up and the marrow starts churning out all the good cells again. It will be interesting to see if changing CDK4/6 inhibitors does the trick in the future.
Hope for good news with your appointment Intothelight.
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So sorry to hear that some of us have gotten discouraging news... prayers and good thoughts to you all.
My onco has never said I'll be on this regimen (Ibrance and letrozole, with monthly Xgeva shots) "for the rest of my life" OR "until it stops working" - she says "until there's a real cure". I like her optimism!
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We need some good news today, right? I went to MO today and the Pet/CT I had last Tuesday is clean. No new anything. Lung nodules smaller, PE smaller (it was actually called a trace), shoulder lesion smaller. It says I MOVED so with the neck, she could't tell from the Pet and had to look at the CT. I did NOT move. I do feel guilty when others have progression. nonahope, JFV, I'm sorry. Faith, great news. I told MO how anxious I was, this scan being after my 19th cycle. He said don't pay any attention to statistics. They don't have anything to do with your individual case. That's the first real encouragement he has ever given me. And he referred me to a new PCP which I asked him to do because I need one. I'm having pretty bad back pain and was worried it was cancer in my spine. Now that I know it is not, I need to see someone else about it. I'll start with a new PCP.
MO seems to think I will be on this combo for a lot longer. I hope that encourages everyone.
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Jaycee, hooray! Yes, we always love good news. I am happy for you. Maybe now we can all jump on the good news wagon with success for a long time.
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Janet...Wonderful news!!!!
Hope
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Nonahope and JFV, I am sad to hear about your discouraging news. Wishing you well going on whatever meds. you must. Hoping you get good results with the next treatment. Lots of prayers going to you both.
Nice to hear your good news Jaycee and Faith.We sure can b e happy for you. Waiting on scan. Thinking no news is good news. Mair
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Jaycee and Faith-So happy to hear the good news. Lifts my spirits!
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Good news for me today also. Just got TMs back and they continue to fall (still stratospheric however) but, going in a good direction. Hope they correspond with Scans as I move forward. They have come down 30% in 5 months.
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