Ibrance (Palbociclib)
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Lynnwood and Myra, Great news!!!!
Met with my oncologist yesterday. It was a relatively short meeting. She indicates that she is very pleased with my blood work and how my body is responding to this drug. She looked into my mouth to evaluate the tenderness and called it mucositis. I guess this is what is affecting other sensitive tissue on my body such as my nose lining and [TMI alert] my vaginal area. I am to start using a mouth wash made of baking soda and salt, but no mention of how to help the other areas. She is a bit concerned about the bottom of my feet. Anything that could affect mobility is a high priority. She says that we could add Gabapentin, marketed under the brand name Neurontin, but would prefer to hold off so we can isolate how the Ibrance and Femara are affecting me during the second cycle before adding another drug to the mix. I agreed since the discomfort is not all that great yet. She hopes that the 7 days off will give my body some energy to reverse this tenderness.
She stated that my blood work indicates that my bone marrow is still working and so she is optimistic that I could get a long time on this drug. Of course, that only matters if it is working. A very upbeat meeting. The traffic pre-4th was horrid and it took me forever to get home. A minor annoyance after such a positive meeting.
*susan*
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Myra, WONDERFUL news for you!!!! So happy for you!!! Celebrate !!!!!
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Hi all,
I'm on my first circle of ibrance and femara a nd I don't know what to expect.
I hope it works for us all. I had CT scan two weeks ago and there some little spots on my liver and my back so the Dr ordered a PET scan and I had yesterday.
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So happy for you Myrs!!!!!!
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So good to hear all the good news and reports!!!!!
theziz...keep us posted
*susan* baking soda and salt has helped me a lot. Gabapentin made me feel really super tired. Not on it any more.
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Theziz, good luck on your first cycle. I didn't have a lot of issues on these drugs, mainly fatigue. My WBC count did drop as my onc warned me and my dose was reduced to 100 mg for the second cycle. I am currently on my 3 rd cycle with fatigue being my main side effect
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Theziz, welcome and good luck. We all have had a myriad of SEs mostly fatigue and flare pain. My biggest gripe is the side pain and constantly runny nose and eyes. Sometimes I feel like a coke addict...LOL. My fatigue has been managed quite well with supplements.
Have a great 4th all the Americans out there (and non Americans) have a hot dog and beer onme. Myra.
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Myra-Fireworks tomorrow are for you! Oooh and Ahhhh!
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and....thank you all for the good wishes. Myra
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theziz- I am just starting my third week in a first cycle on Ibrance and Femara. So during the first two weeks, I have not really noticed any side effects. Maybe they will hit next week! I get blood work done just after the 21 Ibrance pills so I have nothing to report about my levels yet. I am a newbie here so maybe my input isn't worth much. Good luck.
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Myra, what supplements do you take? Welcome Ellelou
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Astralagus 2x/day between meals, Vit C 1000 mgs 2x/day, Ashwaganda 2 x/ day, Maitake drops 8-10 drops 2x/ day. This was outlined ny Pearlady and my Integrative MD.
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I'm on cycle 6 starting tomorrow Just feeling fatigue, aches and a runny nose which I didn't know was from the meds until just now. I thought I had developed allergies
Bab
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Myra, do you order these supplements or can they be purchased at any store? Very interested since I am planning on going back to work. I am a nurse and my job is very physical, I am afraid the fatigue will do me in.
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I order from Amazon. Astralagus and Ashwaganda are the Gaia brand. I take Ester C, lower in acid 1000 mgs, Solar Ray. I just started the maitake drops and can't remember the brand off the top of my head. Myra.
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Really great news, congratulations Myra!
End of 4th Ibrance/letrozole cycle, exhausted but gearing up for the fireworks tonight. Enjoy the 4th everyone!
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Myra, I am so excited about your scans. That is great news.
I start Ibrance with Faslodex next week. Have to wait for the pre authorization, then the pharmacy has to order the meds. I had been taking Xeloda for the past 6 months and it had been bringing my tumor markers down. June 2014 the CA 27-29 was 549, the CA 15-3 was 647. My onc has tried 4 other drugs before Xeloda and none of them worked. Xeloda did a great job of getting my numbers down to CA 27-29 to 307 and the CA 15-3 to 190 but the last three blood results show they are creeping back up so that is was the change to Ibrance and Faslodex. Praying the side effects will not expose their ugly heads. Hang in their ladies we can do this.
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So I was unable to get the Ibrance 100 mg before the holiday..due to needing a prior authorization..So here is what I did.
I took a capsule from the few 125 mg Ibrance that was left over when they took me off that dosage. I took the 125 mg capsule and took a sterile needle and cracked the outside of the capsule. I shook out some of the yellow powder until I thought I had approximated a 100 mg left inside the capsule. Then I took it with water. I did not want to lose these few holiday days without meds since my doctor had restarted me. Anyway, that is my new idea to not miss any days. Of course I expect to get the 100 mg tabs delivered on Tuesday so it was an idea whose time made sense. Happy 4th everyone. Carolyn from Music City
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Carolyn:
I understand your desire to keep taking the Ibrance but compromising the capsule integrity is not a good idea. There are lots of warnings in the drug literature not to swallow a capsule that appears.cracked, broken or damaged in any way. We need to remember there is a very potent chemotherapy drug in that pinkish capsule and it should be handled carefully. Try to be patient and just think of the wait time for the 100 mg as your off week. I totally sympathize with any frustration the pre-authorization is causing you.
Celeste
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Hey all. Really disappointed today. After two months of waiting to start Ibrance due to insurance denial issues (which are still unresolved), I finally started Ibrance two weeks ago on a free month sample from Pfizer. Had labs today and my absolute neutrophil count (ANC) was so low I had to stop the Ibrance after just two weeks. I can't resume it until my levels go up and at that point, will be put on a lower dose. I have no noticeable symptoms and otherwise feel great. My white blood cell counts were low to begin with (I believe from the Aromasin I am taking), so I wasn't going into this with great levels. But I feel so strong and full of energy. It is hard to understand that I have such a critical issue going on in my body with no side effects. This is depressing. I felt such an added peace of mind being on Ibrance.
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JFL,
How disappointing! I have never heard of aromasin affecting blood counts that way, but doesn't mean it doesn't. How often will you have your counts drawn? What number do they want to see in order for you to restart the Ibrance?
Really sorry that this has happened.
*susan*
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JFL, that happened to me first round. Stopped on day 15. Platelets and ANC awful. Waited 10 days and restarted on 100 mgs and have been fine. I have thought the same about my body. Sometimes I feel just fine and my CBC doesn't agree. Stay tough. Myra
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JFL, don't be too discouraged by the wait. Look at Myra. Her recent scan was great! Yay Myra! And she had a break on the drug. I actually started my Ibrance a month late, Due to a previous scheduled surgery, so my markers were up on the first go round of blood tests. Well, had second cycle blood work and markers already showing signs of improvement. Yay me! And I was also dropped to 100 after that first cycle to to low WBC. Hang in there.
Now if I could just get a grip on this darned insomnia.
Stefanie
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Hope, happy fourth ! I can't wait to hearhow your scans look. You had asked me about the pain that my Onc had commented on. I didn't get into great detail with him about it but it was something about the breaking down of the cancer clusters that caused the pain flares. Ask your doc, but I'm hoping a good scan may confirm that. Enjoy your family today.
Stefanie
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Thanks for the encouragement, all. I don't know where my levels need to be to resume treatment. I should ask. I am on a schedule of labs every 2 weeks for Ibrance but will go back in 1 week due to current status. I know that the issue was my ANC was .9 (needed to be at 1.1 or higher). My WBC was low but still okay.
I am also nervous because I am still waiting to hear back on my insurance appeal. The cancer center has spare 125mg pills for me to use until insurance goes through (due to all the patients needing to lower their doses). Not sure about 100s.
I hadn't heard of aromasin causing low WBC either but mine dropped when I began my Stage 4 treatment. The oncologist never mentioned it, as they were only slightly below normal range and sometimes would be at the low end of normal. My husband and I noticed on the lab results and I researched all the drugs I was taking and the only one that mentioned that it could cause lower WBC was aromasin.
Happy Fourth, all! Glad to hear about some positive scans and hope they continue for everyone.
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JFL, my ANC is also .9. My WBC about 2.0. My Onc consulted a Dr Finn at UCLA who is supposedly one of the experts in Palbo (Ibrance). He told my Onc not to lower my dose beyond 100 unless my ANC drops to .5. I also asked him about traveling with low WBCs and he said he isn't worried about anything (as far as my being extra susceptible to picking up illnesses) and that his only concern with low WBC is if I was having a surgery, due to possible infection.
Good luck with your insurance. It took my appeal a whole month, then we started making phone calls and putting pressure on them, until they finally came through.
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JFL
Get our MO involved in working with the insurance co to get the Ibrance approved. Mine did and then it was approved on appeal thanks to her.
Wishing everyone a great 4th!!!!!
Babs
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JFL, try not to worry -your neutrophils should rebound with a short break. Mine were at .49 early on, but they came up quickly (still on the low side, but fine) after a few days break and I am still on the 125 dose (just finished 4 rounds of Ibrance/letrozole). Good luck resolving the insurance, make sure you ask your doctor's office for help on that.
Enjoy the holiday, everyone!
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Seems like many of us have been lowered to the 100mg dose. I wonder why they don't start at this dose and then increase to 125mg if the counts are good. My onc is very satisfied with the 100mg dose and said this is the dose for me. Counts drop but rebound very well on my off week.
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I'm on the 125 dosage. My counts dropped just slightly but not enough to make a difference or a change.
Babs
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