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Ibrance (Palbociclib)

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2016

    Wow, Zarovka, would you travel to Seattle for monthly appointments, or would this be a second-opinion person? You talk about getting cutting-edge advice at a major cancer center, but I am frustrated. I don't even know if I can articulate it. OK, when I was premenopausal stage 1 ILC, I consulted two oncs at two different major cancer centers. They both told me to stay with just tamoxifen, standard of care, and not do the more aggressive ooph plus aromatase inhibitor. They were not concerned about the papers I had read about a subset of ILC being tamoxifen resistant, or that I thought I was at higher risk because of ITCs, low iron, low D, pre-meno, and palpable ILC tumor. You see, I had read all the journal articles I could find, even small studies, and tried to put together various hints in order to give myself an edge. I though these doctors would do that, too. But they don't. They just don't. Now I bring articles about ILC subtypes and they are still not discussing or trying to glean from them. I wonder if they are not allowed to speculate. These are the people, after all, who make the NCCN guidelines. They are competent and caring, but... So now I am hoping to attend the ILC symposium in Pittsburgh, in an effort to get on the cutting edge, but part of me thinks why bother.

    Artist, I was thinking about you the other day and wondering, if it turns out the 75mg Ibrance does not agree with your liver, what about a clinical trial that uses a different CDK4/6 inhibitor, one of the new ones from a different company?

    MomATT, you are working so hard for your beloved daughter and grandkids, so that they can keep life as normal as possible. There simply must be a good new plan for Dani.

  • cure-ious
    cure-ious Member Posts: 2,874
    edited July 2016

    Hey Zarovka,

    Your optimism is inspiring! Good luck at Hutch, it will be interesting to hear what they think of the new treatments coming down the pike, and if CAR-T has any future in mbc. I hope to also consult more broadly outside our local MO community before needing to consider second-line treatments. It will also be interesting to hear whether the FDA will approve Stanford's request to bring back purified stem cell transplants, which worked surprising well many years ago, though it was only tested on a small number of MBC patients (20-25% cured), but could be even better when coupled with immunotherapy with conventional checkpoint inhibitors or the new immunotherapy coming along, like anti-CD47- its hard to keep up with this stuff, so we're all hoping to hear more information and insight from the top cancer centers.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    I would not choose to travel out of state for regular treatment, but I can get treatment options and ideas.

    There is no roadmap if and when the cancer becomes resistant to ibrance and letrozol. I'd like to begin mapping the territory for myself with the people who are overseeing the clinical trials of the next generation of drugs. The trials are not done, the papers aren't out, but they are seeing the patients, talking with their colleagues. They may have a sense of what is working. I'd like get a sense of what clinical trials I should maneuver towards, what off-label drugs might work. What looks like a dead end....?

    I am vetting a couple of major centers now so I am not chasing down advice when I am already in progression. Is it worth traveling to Seattle? I don't know. I am really interested in what I hear about San Francisco. I'll be researching options there as well. It is certainly hard to keep up with this stuff. Hoping that these consultations will be an education about what is going on at the leading edge of cancer treatment and give me a sense of who I trust and respect with my particular situation.

    My New Mexico oncologists get their treatment plans from the NCI website. In this changing environment, that only really works with the first line treatment for MBC.

    >Z<

  • cure-ious
    cure-ious Member Posts: 2,874
    edited July 2016

    Z-Agreed! Pamela Munster at UCSF is involved in some interesting clinical trials, including one combining HDAC inhibitors with checkpoint inhibitors, which from pre-clinical studies should be very effective.

  • cs0600
    cs0600 Member Posts: 11
    edited July 2016

    Shetland Pony,

    Nice to meet you too! I have a really long story but will try to shorten it. I had GI issues, bowel changes and bloating for a few months and got 1. Colonoscopy/negative, 2. Endoscopy - showed gastritis. Went for physical and said I had pain in pelvic area when urinating. She ordered a CT. It showed a thickened bladder wall on right side. Got a bladder biopsy - negative. All this took about 9 months. As a last resort, I asked my ob/gym for a Ca-125 blood test because I wanted to rule out ovarian cancer. He did ultrasound on my ovaries and they were fine but I had fluid in my pelvic area. CA-125 was highly elevated. Sent to ob/gym oncologist who did another pelvic CT and by this time I had nodules and stranding along with fluid so everyone assumed I had ovarian cancer. Had surgery to remove ovaries and "debulk" meaning my tubes, nodules and part of my omentum removed. All pathology came back ILC grade 3 stage 4. De novo/unknown primary. Now I'm seeing MO and have just completed my 3rd cycle of Ibrance/letrozole combowith great results so far. Just had CT that showed no progression and my ca15-3 has gone from 1968 to 863 in 2.5 months! I am keeping my fingers crossed! How was yours determined? Similar story?

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2016

    Thank you to whoever posted about the co-payment card you can get online. A real big help financially. Pfizer sent me a package with a pill box, info and a journal. I have to have a kidney stent put in on 8/12 before I can start. There is so much feedback here! Thanks

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    So I made it 10 whole days before I had to stop Ibrance. Low WBC of .67, feeling so terrible, I'm now on 2 different antibiotics. Does it get better? Or is this how it's going to be? I'm on 125mg. 2 weeks ago I felt great, was on anastrozole, now I feel like crap.

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016

    Dee,

    This is so unusual. Do you have an infection? Was your neutrophils .67 and not your white cell? If not what were your neutrophils ? Let me tell you that my white cells went to 1.6 and Nuetrophis were .60 and I felt nothing wrong but a little tired with no fever. I wonder if you got sick and being your immune system is compromised that this happened? Do you have a copy of your CBC? If you do we can help you with reading it.

    Hugs, Carol

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    Hi Carol,

    I don't have a copy of CBC, it was done at the hospital & results weren't available when I finally fled there. I will go to my Dr's office today & see if I can get it. The trial nurse told me it was my WBC that was .67 that I had neutropenia so maybe it is neutrophils? She said because of the fever that somewhere I have an infection. They will be changing me over to 100mg 21 days out of 28. I'll be back to let you know if I can get my hands on my labs. thanks, dee

  • HLB
    HLB Member Posts: 740
    edited July 2016

    Shetland that is so frustrating and does not seem right that you have to do so much toward your own care lest you get run of the mill. I get frustrated by standAard of care when the onc refused to even consider deviating. I think it's hard to find those oncs who really try to think about each unique situation and what to do about it. It would be great to have someone like that so we could relax and let them do the work! I recently noticed in one of my progress reports that he said "we didn't discuss any trials due to her strong opinions in the past". I don't know what that means excvept that I refused to take afinitor. That was the only one I refused to take and I am certainly interested in hearing about every trial he wants to mention! So I will have to remind him oif that.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    HLB - that comment about affinitor is hilarious. so declining this FDA approved drug is the same as declining a risky clinical trial in his mind. I think i would go with a clinical trial over afinitor from what I have heard. Definitely pull that string ...

    Wouldn't it be nice to kick back and relax and let someone take over ... but even with pretty good medical care, it hasn't been an option for me so far.

    That said, CS0600 and Shetland Pony have certainly done more than their fair share of managing their own care. OMG. Nice job ladies ... clearly you are a couple of survivors.

    Dee - hang in there, still a lot of information missing on what is going on. the WBC count doesn't tell you about neutropenia. People metabolize Ibrance differently. For those who metabolize it slowly, 125 is a wallop. That said I would make sure you look at infection and your other drugs. Some of what you experienced is not typical of a bad day on Ibrance. Neutropenia, even if you have it, is often asymptomatic.

    >Z<

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    couldn't get any info on labs today. unfortunately my regular Dr's MOA is away just like he is, so I probably won't get a copy until next Tuesday.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2016

    Cs0600, so your first CT showed only a thickened bladder, but nine months later an ultrasound showed fluid and a CT showed nodules, stranding, and fluid; which correlated with high CA-125. Was this CT with or without contrast? And only the path report identified it as ILC breast cancer because they did not find a breast primary. Correct? It's so great that your CT and TMs are coming back better now. I asked about your imaging because I'm interested to know what type is successful at detecting ILC mets. My story is not so complicated in that mammogram, breast MRI, ultrasound of liver and breast, and ultimately PET-CT showed everything. I had an abdominal ultrasound because of upper right quadrant pain. I expected to hear I had gallstones. Not even the doctors suspected liver mets. (Edited to say this was when I was still having imaging at the old place closer to home.) The same week, I was getting the suspicious breast area evaluated after moving from bi-RADs 3 to bi-RADs 4 after waiting six months. Went to my new onc, who ordered CA 27-29, and when it came back high, she said we would find cancer somewhere and not just in the breast. She ordered a PET-CT, and it showed extensive liver mets and also retroperitoneal nodes and the breast tumor. Breast biopsy showed ILC, same as before. Onc thinks the breast area was metastatic disease, although it could have been a missed second primary (biopsy in 2011 said benign) or a new primary. I have regular PET-CTs now, which for the most part show the shapes of (dead) liver tumors but no hypermetabolic activity. Actually the last two scans have been a little ambiguous, but nothing that can be called progression. TMs popped out of normal range once but went back down. I guess that is a little complicated after all.

    GG27, so sorry you are feeling rotten. I will say that I feel much better on a lower Ibrance dose. Lowering it made a big difference.

    HLB, it is so strange. I feel like my current onc knows more than I do (unlike my first onc), cares about me, has a lot of experience, and is good at her job. So far she has made the right calls. But I still feel that I would like to have an onc who would approach my case more like a detective, especially since it is ILC, which is understudied. I am already at an NCCN center! Nobody talks to me about the leading edge and the next generation of drugs as Zarovka mentions. So I guess I have to spend money I don't have to go to the ILC Symposium in Pittsburgh. HLB, what if you hadn't read those clinic notes to find out your onc wasn't planning on discussing trials?! My old onc had some mistakes in his notes as well, one of them being "She is afraid of hot flashes." What the heck? I never even hinted that I had any concerns about hot flashes.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2016

    Thanks, Zarovka. I have to say that witnessing your involvement in your care has encouraged me to stay on track. Sometimes there is some patient burnout. During those times, I feel I can let my onc fly the plane for a while because she is a good onc. It's one of those quality of life balance things for me. I also feel that I should do my research now before I need a treatment switch. When I was stage 1 and finished with surgery and rads and on to tamoxifen, I sought two second opinions. I switched to one of those oncs, knowing I would be well-placed should anything come up in the future. So when I had that bad liver ultrasound, I was already a patient at a good place and I was seen and treated quickly and wisely.

  • LovesMaltese
    LovesMaltese Member Posts: 551
    edited July 2016
    Dee, I think the number you reported was the number that determines that you have neutropeina which is a SE of Ibrance. The drug is designed to do this to work it has to lower your counts. BUT.... it is not suppose to go under 1000 before you can finish a cycle where you have a week off to rebound. I believe you were at 670 (.67) and I am not sure again where in your cycle you were. I'm hoping you were at least 2 weeks plus into your cycle. The way it is explained to me is that it works just as well on a lower dose if you achieve your number above 1000 by the end of the cycle. The trial here in the states has a protocol that they follow when this happens. I know because I have been on it and moved around since October. So I am sure they are going to lower your dose and give you extra time off.

    I bet the aches fever are from something you picked up because of your low numbers. I got sick in March (upper respiratory) and it took me 2 weeks off to rebound and I had to lower the dose as well. The Ibrance cycle I am on is 75mg 2 weeks on and 2 weeks off. After I finish my 2 weeks on I want to guess that my numbers are close to the 1000 mark. I had blood work this past Friday and I still had 4 more doses to go and my number was 1.27 and Ibrance still works on week off that is why I have to go an extra week off to rebound. Everyone is different in how this drug works. What ever dose can take those numbers down but not under 1000 is the right dose that works. My white cell count has always been 2.0 or above except for once. I really have no SE to tell me how they are. I seem to be always tired but do know that my scalp gets very tender as I near end of cycle and Ibrance will cause me some burning sensations in my back. After second week off SE are completely gone.

    Hope you feel better soon.

    Hugs Carol
  • DebK227
    DebK227 Member Posts: 48
    edited July 2016

    Hi Shetland! I live just south of Pittsburgh and spoke with my oncologist regarding the Univ of Pitt Cancer Institute symposium. He was not aware, but I gave him all of the information for registration. I will see him 2 more times before the end of September to see if he will attend. He is a Univ of Pgh Medical Center Onc, so I'm sure he will have access to the information provided. I cannot attend. My daughter (age 9) still does not know about my stage 4 dx and wouldn't understsnd why I would have to drive to the city for a meeting. I will keep you, and all of our ILC family posted.

    Debie

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    hi Carol, I was only 10 days in on the cycle. The trial nurse says I will be switched to 100mg 21/28 starting on Aug 9 as long as my numbers are up, but they will be checking everything again on Tuesday, so every week at this point. thanks for explaining it to me, dee

  • dancingdiva
    dancingdiva Member Posts: 317
    edited July 2016

    u ladies amaze me with all your knowledge. Truly wow. Like I've said a million times, these forums teach me everything I know about bc.

    I saw my onc today, I've had redness on my right boob for over a year after my BMX. So had it biopsied since be was found on right side and low and behold it's pos. So I have IDC IBC and it's been there for awhile. I'm pretty down. It's always bad news. Doesn't seem to change my tx. Onc insists on doing Ibrance Femera and maybe rads later.

    Tried adding stuff to my dx etc. I can't seem to write what I want to write but have to pick multiple choice. Didn't work. Down.

    dd

  • cs0600
    cs0600 Member Posts: 11
    edited July 2016

    Shetland Pony -Yup, you got it! Both CT's were with contrast but done at 2 different hospitals. Obviously I became frustrated when everyone at the one hospital said I had nothing wrong when I knew I had something serious. I know my body. I did have Tubular Carcinoma (IDC) in my left Breast in 1998 but nothing is showing in either breast right now. And because now this is ILC, the new hospital ordered the slides from my Tubular Carcinoma to see if any cells were mixed or missed and they found nothing there but tubular cells. Apparently there are no good ways to pick up ILC on any scans unless a nodule, stranding or tumors become large enough, which is rare for ILC because it grows in strands or sheets and often not picked up. I've not had a PET scan and wonder if I would benefit from one. I'm thrilled for you to have gained stability from the Ibrance for such a long time. It gives me hope.

    Zarovka - It is sad, but we know our bodies better than the docs and if you feel something isn't right you have to take charge of your own care. That goes for all of us! What I've learned from this experience is that each specialist only looks at what they specialize in, not your whole body and all of your symptoms. If you add up all my issues it really pointed to something wrong in my pelvic area but it seems like doctors don't want to or don't have the time to add it all up and do some research. So I feel for all of us trying to determine the best way to manage our care. It appears as though you are thinking about what the future looks like for you and have a good handle and positive attitude towards your care. You are one step ahead.

    Best wishes to you all and great job on the fight! I am learning so much on this thread!


  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited July 2016

    Hi Dee - glad they found the problem and you can expect to be feeling better soon! I'm so sorry you had such a tough time with your first cycle on ibrance. Everyone responds so differently to these medications and combinations of medications.

    Hope you are feeling better already!

    Cathy

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    thanks Cathy, feeling a bit p.o'd at the moment because I was feeling so good on anastrozole, but I'm sure that will pass. I was so happy to be accepted into the trial & now I'm not so sure. The antibiotics are leaving me feeling a bit cruddy but hopefully they will do their job.... soon! :) cheers, dee

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Dancing Diva - Welcome to Tribe Ibrance! Cancer is so complicated. The diagnosis sort of spills out over time and changes depending on who decides to do what test and who reads which scan. It is one of the roughest parts because every twist and turn comes with emotions. I am speechless reading about Shetland Pony and cs6000. I went through a fraction of that and I am pretty numb to any news at this point. Mentally that must have been really tough.

    My bone scan and CT scan are over. I passed out when the put in the IV for the contrast. I have a medical phobia which is so deeply subconscious that I cannot tell it's going on until I am on the floor.

    I asked to lie down while they put in the IV but they had no bed handy. Since I didn't feel like I was freaking out I said fine. Then halfway through the procedure I am on the floor. I am thinking about hypnosis or something to deal with this. My heart slowed down dangerously during my liver biopsy. Any procedure that invades my body, even minor things, can have this effect. Even in the most hopeful scenarios, I will be dealing with these procedures. Curious if anyone has dealt with this.

    I feel pretty good now that the procedure is over, just physically and emotionally exhausted. I get results tomorrow or thursday. Relatively calm about that but still waiting is no fun.

    Pleasantly tired. Glad it is over. Resting in bed. Hope everyone found at least a moment of peace today.

    >Z<

  • eelder
    eelder Member Posts: 152
    edited July 2016

    Oh Z.... I'm so sorry about that. As if these scans don't cause us enough anxiety. Glad to know these scans are behind you.... now for the other "fun" part. The waiting. Sending you LIGHT and POSITIVITY. I know these scans will bring you good news!

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2016

    Carol, you said, "...it is not suppose to go under 1000 before you can finish a cycle where you have a week off to rebound." Just to clarify, mine has been as low as 700 on Day 21, and has been 900 on Day 28. What I've been told is that you can't restart until it's at least 1000, which is why I now just always wait a few extra days before restarting -- just to be sure it's gotten back to 1,000+. (I no longer get tested on Day 21 or 28 b'cuz I'm out of sync with my Faslodex shots, and that's the only day I go in, to get those.) Anyway, I'm pretty sure we're saying the same thing, but on first read, it sounded like you might be saying it shouldn't go under 1000 until Day 21, and I'm pretty sure mine must at times have been below 1000 prior to Day 21 -- just not as low as Dee's got when it did.

    Dee, for what it's worth, I agree with Carol that it would be most unusual if everything you're going through is due to Ibrance. Not saying it's not, because I'm sure it could happen. But getting so sick, while that may be related to your low counts and picking up something, is not a normal reaction to Ibrance. I guess what I'm trying to say is, try not to fear that Ibrance will do anything like that to you when you restart.

    Shetland, interesting observation about the two oncs you saw not caring about ILC as a subtype, no less subtypes within ILC. I've mentioned elsewhere that I had once asked my UCLA onc if it mattered in terms of possible drug resistance if my recurrence was IDC or ILC, because I had both initially. She said the only way it could help her is in spotting possible future mets early b'cuz IDC and ILC tend to travel to different organs, as CS0600's post confirms. But she said it would make no difference in tx recommendations. I've tried to be comfortable with that answer, even though I don't understand it, especially seeing how drug resistant some ILC gals are. Thankfully, that hasn't happened yet to me, so I'm not going to borrow trouble, but it's certainly something I'd like to pin down -- why some of the best oncs in the country (as mine is, and I'm sure yours were) don't put more emphasis on potential differences between IDC mets and ILC mets. Do you think maybe it's just that it's much more complex and individual than simply IDC vs. ILC, so separating us out based on that doesn't accomplish anything?

    CS, so happy to hear you are getting such great results quickly from Ibrance + Letrozole! Boy, you sure were put through the wringer with your dx!

    Z, I love the paragraph you wrote on why a second opinion at an NCI-designated cancer center is important! Again, I've probably shared this elsewhere, but there have been multiple times I've been put on a tx @ UCLA that was not yet FDA approved. In 2008, I got TC (over AC+T which had been recommended locally), because my UCLA onc knew and could reel off TC's superior stats. Within a year, TC, was commonplace. Last year, I got switched to Faslodex w/Ibrance, again before it was FDA approved and I had to constantly explain to my pharmacy that no, I was not on Letrozole, the only one that was approved at the time with Ibrance. Also in 2008, I had Diep recon when UCLA and NOLA were about the only places doing it. When asked about recon, my local PS's first question had been, what kind of insurance did I have, while UCLA's PS knew all about my dx and the fact that RT was recommended for me from the get-go (with an mx) due to extracapsular extension. So he knew Diep was the best choice for me. So Z, your excellent explanation totally resonated with me!

    And I just now read the post you added as I've been writing this and trying to cook dinner. Gosh, I'm glad you're okay! What a horrible experience and stressful fear to have! (((Hugs)))







  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Deanna, eelder - thank you for your kind thoughts. Looking forward to a cancer free day tomorrow, at least as far as procedures go. In all honesty, I am having a great summer. Overall things are good. My thoughts are with momallthetime and Dee who have yet to settle into a groove with their treatment plan.

    Shetland - I hear you on burnout. I am hoping for good scans so I can coast a bit. I happened to be in Seattle in August anyway so I made an appointment at SCCA to scope things out. I wish I could have a vacation with no cancer component, but I do worry about what i am going to do living in the boondocks if the cancer becomes resistant to Ibrance.

    As far as I can tell the new ASCO guidelines for second line treatment of hormone receptor positive breast cancer is Faslodex/Ibrance or Affinitor/Aromasin. I am not really exited about Afinitor and Faslodex and Ibrance seem awfully similar to letrazol and Ibrance.

    Cure-ious - I had never even heard of HDAC inhibitors. Entinostat looks very interesting. It cheers me up every time I hear about new major lines of research.

    May we all have lots of time to ponder and discuss what's coming down the pipeline.

    >Z<


  • faith-840
    faith-840 Member Posts: 926
    edited July 2016

    Hello everyone, I've been reading all your posts but haven't posted in awhile as sometimes I just don't have the energy to engage here. I'm overwhelmed with everything you all are going through. When I was diagnosed this time around with a return of the cancer after 25 years, my onc said I was lucky bc there were so many treatments coming along. I sure didn't feel lucky. But after reading the last few pages I do feel lucky that I have what seems to be an ordinary ER+ breast cancer and that I've been able so far to tolerate 125mg dose of Ibrance. My first scan after 3 rounds showed reduction of the lung mass andthe nodes disappeared. My next scan isn't until September, so I'm very hopeful that will be good as well. I write this not to brag but to give hope to those who are newly diagnosed and coming here for the first time.

    As dancing diva has said you ladies amaze me with your knowledge and your research. You do have to be your own advocate and 25 years ago at age 50 I had the energy to do some of what you are doing but not the advantage of the Internet. Now, I'm grateful to be able to learn more from all you younger stronger women and I admire and pray for you all. I am just ending the second week of my 7th round and the fatigue seems a little better. I have also started taking the Claritin. Not sure if that's it or just getting used to the drug makes a difference. My sleep has been terrible lately and my hair is still thinning, my mouth and gums are sore and tender a lot. However, most things are tolerable and some days I think OK I can do this and others my mood is so low and I think I want to be done doing this. I think the letrozole plays havoc with my emotions.

    Dee, I'm sorry you had such a rough start but hopefully things will improve. MomATT, you are an amazing and strong woman to do all you do, I know we do what we have to for our kids. Z, I'm sorry about you fainting at the scan. I rarely faint but I did the day the doctor told me I had a lung tumor over the phone. Then a few weeks later after just starting the Ibrance/let I stood up after eating breakfast and with no warning just fainted dead away and was out long enough for the rescue squad to arrive after my DH called again as he did the first time. Scared us both! Now, I really worry about fainting and being seriously injured with a hip fracture or something. I sure hope the next time you ask to lie down, they take you seriously. After all that, sending prayers you get great results back. Good luck with your trip to Seattle, I'm sure all of us will be very interested to hear what you find out.

    To all of you, I don't want to mention names for fear I will forget someone, but I really do keep you all in my prayers and wish you God's healing mercy. Sleep well tonight.

    Faith (in the future)

  • GG27
    GG27 Member Posts: 1,308
    edited July 2016

    Deanna, thx for clarifying what Carol said & for trying to reassure me that this may have been an anomaly, but I got the impression from the trial nurse that they felt the low neutrophils were from the Ibrance which I think is why they are changing the dosage but not the duration for next cycle, but that I picked up an infection because my WBC were low.... vicious circle!

    I will try again. I don't ever want to be sick like this again though. heading to bed, thanks for the advice all,

    cheers, dee

  • HLB
    HLB Member Posts: 740
    edited July 2016

    A question for you guys who are knowledgeable about the way the blood counts go down on this drug. I read that post but it was a bit confusing to me and sometimes I can't concentrate. Some of my counts have been down in that they show up blue on the chart as an alert, but not down by very much. After the first round my onc said "you counts are not down yet". After the 2nd month of ibtance/faslodex, they look almost the same; down a bit but now much. Does that correlate with whether or not this drug is working? What I mean is do I have to wait for them to go to a certain low point before I can expect to see results?

    I will be getting pet before my next round/onc appt due to the ca27-29 going up since I started. My last one was only about 3 months ago.

    Thanks everyone. I too am impressed with the knowledge. I try to do my research but I'm in a phase of being sick of it. I tend to spend hours every night reading about it to the point I get tired of it and stop completely for awhile!

  • HLB
    HLB Member Posts: 740
    edited July 2016

    Also, deanna, I screen shotted that post where you told me that it can take many months to start working, and I sent it to my parents. They were SO RELIEVED and feeling so much better! I really appreciate that. They worry and get down about it, more than I do I think. So thank you so much for that!

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited July 2016

    I've been dealing with a rash on my face (around my nose, laugh lines and chin - like a muzzle) for the last 4 months. I have posted about it a couple of times. I thought it may be a reaction to either Ibrance and/or Letrozole. After a lot of trial and error and internet research I thought I had found the cure (topical 1% hydrocortisone cream) and it practically disappeared. I had already made an appointment with a dermatologist but almost didn't go because it was SOOOO much better. I thought they would look at me and say "why are you here??" But I'm glad I went. Even though the rash was nearly unnoticeable to me she recognized it immediately and diagnosed me with periorificial dermatitis. The first thing she said was "STOP using the hydrocortisone cream". It does improve the look but it won't cure it and will eventually damage the skin. She prescribed a two month course of antibiotics (minocycline HCL) and said that should take care of it. She didn't think it was a reaction to the ibrance\letrozole but I'm not convinced there is no connection which is why I'm posting about it. Here are some of the reasons I think there could be a connection. I'm using PD to mean periorificial dermatitis.

    1. PD mainly (90%) affects adult women aged 15 to 45 years - (I'm 54)
    2. PD may be related to activation of the innate immune system - (possibly due to low WBC from ibrance?)
    3. PD may be induced by hormonal changes and/or oral contraceptives - (estrogen suppression from letrozole?)

    I may be grasping at straws here and perhaps there is no connection but I thought it was worth noting as a possibility.

    So I've been on the antibiotics for a week. As I was warned the rash flared up but seems to be calming down again now. I'm washing my face with just warm water, not using any moisturizer or cosmetics on the area and stopped using toothpaste with flouride which I read could be a contributing factor to this condition. So I'll let you know if I'm all clear in a couple of months.

    Thanks for reading about my stupid rash. In the scheme of things it is nothing more than an annoyance.

    Cathy