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Comments

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2018

    Welcome Piggy99. A lot of our neutrophils hover around 1. I like that your doctor let you start a new cycle. Why not blame Ibrance for your lack of motivation? Better than taking the rap yourself. I'll be crossing my fingers for you, too.

  • piggy99
    piggy99 Member Posts: 183
    edited March 2018

    Thanks for the welcome - and Jaycee, you're right - maybe I'll blame all my lack of "get up and go" on the meds from now on!

    Looks like I spoke too soon - the doctor's OK to start the new cycle was based on the numbers at the end of the last. Now that they've seen the new number after the break (they're probably not refreshing the web page as often as I do) they want me to hold another week. Boo.

    IntoLight, you made me chuckle. The MO's assistant also "reassured" me that specialty pharmacies mess up all the time.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    Amarantha. I know i spelled your name wrong, sorry.

    Yes, i was happy to hear my doc say she will do another biopsy BX. But not happy :to hear

    say nothing about doing another Foundation One F1 test.

    I'll list a few more abbreviations. TX treatment, MO medical oncologist, ERS1- genomic alterations test results by Foundation One. I reAlly don't know what it stands for or how useful the report is,

    I don't think I've listed all the abbreviations i used. I'm glad they changed your treatment based on the new biopsy. That's a big change. And that you are tolerating it. Maybe they don't do Genomic Testing in Spain. They use a sample of your tumor from the BX and analyze it to see if there are any approved drugs that it is resistant to and or might respond to. Or if there are clinical trials it matches. They test for hundreds of mutations. Mine only came back with four. None of them very useful yet.

    Hope this helps


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited March 2018

    Janky, I had a couple of weeks of "weepy" before I left for NZ but this 4 weeks has been good for me. Being totally away from appointments ay have something to do with it and the only time I needed someone was for my Faslodex injections which were done by a nurse friend of my SIL. I go back to appts. ever day next week. I also know that the strength of my right hand has deteriorated so look forward to CT on Tuesday. I leave tonight for Vancouver.

  • janky
    janky Member Posts: 478
    edited March 2018

    Marianelizabeth - your 4 weeks in NZ leads me to the question 'because of the 28 day cycle of Ibrance 21 + 7 off, is 4 weeks the maximum travel we can do?' I am thinking it would be difficult to get blood work, then prescription filled, if out of country? My cancer center will not give me my next cycle of Ibrance till my neutrophils are up, probably 1 week from yesterday. I am hoping to get a proper routine going, then travel to Australia mid October (originally it was 8 weeks, then 6 to keep DH happy), now with MBC I am thinking 4 weeks? Mind you, I will take it!! I have wanted to go to Australia since I was 14 and here I am 64...it's time ;) Have a great weekend everyone!

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    Janky My MO just changed my appts to every 6 weeks. So, I start my next cycle without having labs. But, I'm on cycle 13 and I've never had labs go low enough to have to delay treatments. I've been on 125mg the whole time.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited March 2018

    Grannax2, yes, 4 weeks works out for Ibrance and I start my 8th cycle tomorrow once home. I doubt we could get Ibrance 2 months worth in advance. Faslodex I brought with me in a small cooler bx and had it done here. It was to have been done in a clinic but miscommunication occurred and my SIL found an RN friend who did it. Blood work my MO and I agreed for me to wing the blood work. have it done Monday, CT chest with contrast Tuesday, MO Wed. and RMT for lymphedema Thursday. I am 69 and with family here it was easier but we did break it into chunks with the odd rest day. Go for it!!!

    Air NZ has a bidding upgrade system. I got a really good return cost from Vancouver and both 4 weeks ago and today got an upgrade to premium economy. Yay!! Off to the airport.

    Marian

  • Leapfrog
    Leapfrog Member Posts: 406
    edited March 2018

    Janky....don't worry. If you were .7 after one week's break you will definitely be more than 1.0 after a second week. I'm in my thirteenth cycle and every cycle I need two weeks for my neutrophils to be 1.0 or more. After the one week break my level is exactly like yours, usually .67 or .72 or thereabouts. I did have one cycle (two cycles ago) when I suddenly only needed one week's break but the next cycle I went back to needing two weeks. I expect I might always be like this so I don't worry about it. I'm told it's still effective and my scans are showing stable disease.

  • janky
    janky Member Posts: 478
    edited March 2018

    Leapfrog - the first cycle neutrophils were .3, I stayed off another week, .7 so now I will be off 3 weeks in total :( - that's what I am stressed about...I too am sure they will be acceptable this next time, just seems like a long break. What is Perth like? My son lives near Brisbane.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    Amarantha. I see you were on Afinitor/aromisin at one point in your treatment. It looks like it failed you, as did Ibrance/femara. No wonder they didnt work since your cancer changed to triple negative. I use AI to abbreviate drugs like Femara and aromasin.

    I'm determined to have a better day today. It's beautiful here in Texas, I want to get out and enjoy the weather.💞

    .

  • amarantha
    amarantha Member Posts: 330
    edited March 2018

    Yes, Grannax, that is right ! The Afinitor worked for a while, I was on it a good long time (ten months) - horrible drug. Ibrance was a walk in the park and a relief after Afinitor. But sadly not for triple negative. Thank you so much for explaining all the abreviations. I was soooo tired that day, and funny how it is, looking them up seemed like lifting an elephant. Much better today !

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2018

    janky, October is a long ways away. Your Ibrance schedule will probably stabilize by then and you can work around it. I took an extra week and a half off to travel to my son's wedding. An extra two weeks off by then will be doable. If you end up with the fatigue side effect (or anything else, I hope you don't) then extra time off to feel good for a trip like that would be worth it. You would still be taking the Letrozole and be fine.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    I just found the AA thread. I saw lots of posts from you on it. After reading all the posts on that thread and listening to my own gut instincts, I'm going to refuse AA. It makes no sense to me, the lung issues are ridiculous for someone like me who has lung mets, neither drug matches to any of my mutations on F1 report, it's old in comparison to other drugs.

    I think this decision will help me not worry as much as I have been for the past few days. My instincts have been right too many times to ignore them.

    There are plenty of newer drugs out there to explore. Maybe she'll even mention one of them next time I see her. Anyway, I'm already sighing with relief that I don't need to dwell on what she said any longer, I can move on to more pleasant thoughts that don't bring panic.

    Thanks Amarantha💞

  • cure-ious
    cure-ious Member Posts: 2,897
    edited March 2018

    Amarantha- An MO at Dana-Farber commented that their best results for checkpoint inhibitors (immunotherapy) have been in women who had ER-positive MBC that mutated to triple negative...

  • janky
    janky Member Posts: 478
    edited March 2018

    Thank you for encouraging words (need lots lately)! I guess until I am cleared to start cycle 2 my imagination will run away on me, reading all the great info here helps, thank you so much!

  • cure-ious
    cure-ious Member Posts: 2,897
    edited March 2018

    Amarantha- Also here is a link to an MO who is hopefully for IO-chemo combos:


    http://www.onclive.com/conference-coverage/mbcc-20...


  • cchilders79
    cchilders79 Member Posts: 38
    edited March 2018

    Hi everyone! Sorry been hiding well been super crazy busy. We have a lot going on over here luckily we did get somethings move around in my little studio apartment (I live with my father we constructed this a few years back the kitchen is super small). But I go wed for labs and followup with my mo. I will know if I am starting round six. Will let y’all know!

    I have had dry skin especially my hands and feet but I treated myself last week to a mani and pedi and cut my hair. It looks better and I dyed it since that was looking bad too.

    I have discussed travel once this month is over and my mo told me we will work out a gameplan. I think I will limit to at least two weeks to visit (wanting to see my sister) oh yeah my sister had her baby she was almost one week late with baby no 4. He is adorable and I wanna go see him! His name is Matthew. My niece Arabella (she is the oldest) loves to hold him. My sister has been busy with the two middle boys James (who’s 4) and Thomas (who’s 2) as they are driving her crazy. Plus I am engaged been for over a year so now working on our wedding for next spring!

    Oh I love hearing all the great news and scans I am so hopeful and I hope my scan in May will really hit home!

    So yeah sorry for the delay just been bananas over here!


    Chani

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2018

    Has anyone heard from Tarheelmichelle? Maybe she is taking a break from posting?

  • Leapfrog
    Leapfrog Member Posts: 406
    edited March 2018

    Janky....sorry, I misread your post and thought it was after one week. Yes, I'd be a bit concerned as well as it does seem like a long break. You don't have your meds showing. Are you taking an aromatase inhibitor like Letrozole? I'd imagine you are because that's the norm. If so, that will keep your cancer under control while you wait for your body to adjust to Ibrance. Before Ibrance came along, so I've been told, Letrozole et al kept women alive "for many years" with metastatic cancer. That's what my first oncologist told me and I've read articles that confirm this. I hope this helps a little bit.

    You probably know that Brisbane is on the east coast and is subtropical in climate. Perth is on the west coast and has a temperate climate like California. Perth is quite similar to parts of California. I'm going by what I see in movies having never been in California! Perth is much further south than Brisbane and not as green as we only have our rainfall in winter, between May and November and next to no rain at all in summer. Brisbane is lush and green but when I was there for a holiday I found the climate trying in November as it was very humid. I guess you're hoping to visit your son. How fantastic. I hope you can pull it off. Keep us posted!

  • amarantha
    amarantha Member Posts: 330
    edited March 2018

    Cure-ious, manifold thanks for your link to the handsome French doctor. Now to find a version of the same in French that I can take to my oncologist on Friday. Is there a glimmer of hope ? I'm secretly terrified. It would be fantastic if all these things said by Docteur Andre prove true, and if I could somehow get access to him, and/or his treatment. I have not have as far as I know any kind of genetic testing. Pray-hoping desperately ...

  • Ashlyn
    Ashlyn Member Posts: 93
    edited March 2018

    janky: my situation after cycle 1 was similar and really had me worried. 0.3 after first week and a half break. 0.6 after second week. 0.9 after three week. In total I had to take just over a full month to get over 1.0. It was ridiculous! Dropped me to 100mg right away and Grastofil carried me through cycle 2-3 when my counts dipped too low. I know that’s not the norm though.

    After Cycle 3 my scans were good. Regression and resolved cancer areas in lungs. My MO said cycle 1 may no not have counted for me. I am now Day 6 of cycle 5 and know I’m probably hovering between 0.3-0.9. I’m only doing 14 days of this cycle and then two weeks off.

    I take Vitamin A emulsion drops to try to increase counts. Ordering maitake D as well to try out. I will be dropping to 75mg next cycle as my bone marrow just doesn’t like this. I go under 1.0 after 7 days every time. It’s super frustrating and worries me. Hope that the 75s will help. And it’s comforting to see others here stable on 75s.

  • janky
    janky Member Posts: 478
    edited March 2018

    Thank you for that! I am looking into the shot (neulasta) if counts don't go up and will see about a lower dose...is maitake a mushroom supplement? Hugs...Jan

  • wallaby715
    wallaby715 Member Posts: 183
    edited March 2018

    Although I have not posted much on here, I have read a lot! However, I will be bidding you all goodbye on this thread to move over to discussions of Affinitor. I have been on Ibrance, along with Letrozole first, then Faslodex, since April 1, 2016. Just finished my last course of Ibrance on Friday. It's apparent with rising TMs that the Ibrance/Faslodex is no longer working so time to try something else. I've been on Ibrance so long it's like bidding goodbye to an old friend! I have Pfizer to thank for providing me with Ibrance for $0 co-pay, on my part, for almost 2 years!

    I thank all of you for the discussions, from which I have learned much. I think I might be seeing some of you on the Affinitor thread also. I wish all of you luck in beating this monster, no matter what treatment course you are on at the moment!


    Cindy O'

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited March 2018

    janky, my MO says we (BC) are not using neulasta or neupogen because it is unknown when our neutrophils and WBC tank, unlike during dose dense chemo. Just saying as I did ask when mine were too low. But now into cycle 8 and I seem always to be able 1.0.

  • janky
    janky Member Posts: 478
    edited March 2018

    marianelizabeth - Hmmm that makes some sense I guess, let's see what Thursday blood work brings :) This (mbc) is so frustrating, so many unknowns...

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2018

    Cindy, you and I were dx within a week of each other in October 2006. I remember saying something to my surgeon about it being breast cancer month. She replied dryly "every month is breast cancer month." You got a great run out of Ibrance and I hope you experience the same thing on Affinitor.

    Chani, great to hear things are busy for you in such a good way. Good luck with labs and being able to continue the treatment.

    Praying for Patty and all of us as we navigate our winding paths. I'm so glad I have you all.

  • Leapfrog
    Leapfrog Member Posts: 406
    edited March 2018

    Cindy...I hope Affinitor works well for you. Perhaps you'll pop in some time and let us know?

    Jaylea....Patty is constantly on my mind and I feel the same way you do. You girls are my greatest support. To read your stories and get to know you is one of the joys in my life, despite the low points when we know one of us is suffering Hug

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2018

    Good luck, Wallaby, and Chris, I'm with you..... onward to the rest of us!

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2018

    The PAN Foundation MBC fund just reopened if anyone needs help with co-pays.

    https://panfoundation.org/index.php/en/

    The PAF MBC fund is closed but it's BC fund is open.

    http://www.patientadvocate.org/help.php?p=905

    If anyone needs help with foundation grants, PM me, although asking questions on this thread could help others, too. Either way.

  • chowdog
    chowdog Member Posts: 190
    edited March 2018

    Hi ladies,

    I just want to introduce myself as a new member of the Ibrance group. I was originally diagnosed in 2007 with Stage IIA cancer and found out cancer has returned in Feb with mets to bone/spine, lung and brain. I am scheduled to start SRS/cyber knife on 3/19 and then begin the Femera/Ibrance regime on 4/9. I want to say seeing tons of ladies stay on Ibrance for so many years gives me a lot of hope.

    I have gone through quite a few pages of this thread, but I am looking for tips to keep my absolute neutrophils in check during the Ibrance regime. My ANC has always leaned towards the low end of the range (1500 is normal for me). I really struggled during the 12 weekly taxol treatment back in 2007. While I didn't get any infections, my MO had to delay taxol by 3 weeks.

    Since the mets diagnose, I have revamped my diet : low fat, high protein (mostly white meat with occasion lean red meat), lots of veggies and fruits and high quality snacks (like cashews, greek yugart) . I have also lost quite a bit weight since the diagnose (underweight now) and am looking to gain back some weight and get back to excising as well. I am wondering if there are more I can do in terms of nutrition, supplements and activities to maintain my ANC.

    Much appreciated,

    L/Chowdog


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