Ibrance (Palbociclib)
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dutchiris, if you continued to work during Big Red and Taxol, you've got this, girl!
Wisconsin makes 'em tough!
PatGMc
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Moomala- Sounds like a good plan for you ---SSD/SS issue. I pray my application goes smoothly in Sept.
Concerning the continuing-to-work issue---everyone and every situation is different. I think I am still processing MY situation in my head. I am ready to "retire" from my career. That chapter of my life is done. But I worry how others will judge me. I feel like I am "tough" also. But do others view me as a wimp. That I COULD continue to be employed but CHOOSE not to work. My finances are not great. And I will have to pinch pennies. But this is my decision and everyone has to decide this for themselves.
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Moomala YAY for the shrinking Lung tumors!!!! So happy for you!!!
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Candy678 it truly IS your choice. I can't imagine anyone would think anything different. Gosh i've had all summer off while my husband has worked more than full time to make up for the $$, and nobody has said a thing about that. You are so right - nobody knows what YOUR situation is. My retirement will not be a walk in the park for us financially either. We are both self-employed and had planned to work into our 70s but that's all changed. I'm glad you are doing what's best for YOU!
Nicole thank you!!!! I was SO hoping to have a fully excellent report like yours but I will take what I've got and hope that the scans in two months are fully stable. I mean, the meds are working on these lung tumors. Come ON bones!!!
dutchiris I'm hoping that my 2nd zometa infusion goes better than the first. It's great to hear that you didn't have a problem with it. I worked through the red devil too although needed a few days off here and there. It was not always easy. We are all made of such good stuff but I'm not from Wisconsin! I remember swallowing those first few days of ibrance and being very anxious but it was ok! You got this!!!
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I have a question... about Ibrance that I posted also in the Liver Mets thread because its more about people that Ibrance stopped working for, so I didn't know if those people would still frequent the Ibrance thread so I will cross post over there for that reason.
For those that Ibrance and Femera stopped working in less than a year or less than 6 months, how was your response after the first 3 months was it a big response, or was it slight or not at all and you gave it more time?
Thanks,
Nicole
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Moomala, I'm so happy about your response to Ibrance. My oncologist very much takes a wait and see approach to what's happening with bone mets. He has even indicated that one radiologist can read the same scan and see something slightly different. We always wait for a second look in 3 months before we make any decisions. So far, 34 months into this, that has worked out well.
You might want to consider doing what I did just so more than one doctor is keeping an eye on things. I asked for a referral to an oncology orthopedist and saw him for x-rays and a consult the first couple of years. You can even make the appointments fall halfway between your scans if that gives you more peace of mind.
My best to you!
Love from PatGMc
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PatGMc I could kiss you right about now. I have an orthopedic oncologist who follows me for a separate metabolic bone disorder and an ortho spine doc who follows me for compression fractures and all my other back issues. I will call them both to review these findings with me. You've also made me feel way less unsettled with spending the next two months in wait and see mode and I sure do thank you for that!
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Moomala,
So happy Ibrance worked on your lung mets. It makes sense the explanation your NO have you on the bone mets.
Dutchiris,
Everyone is different about continuing to work. I think it depends on several thing e.g. Money, enjoying your job, age.
I was planning to retire at 60, but my Cancer decided to wake up and start growing again. I decided to retire early at 58. My job was very stressful and I worked a lot of hours. I don't miss it at all. My husband and I love to travel and have several trips planned.
I am able to pull money out of my IRA and also was approved for SSD.
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dutchiris, I take all three, but like everyone has already said the SEs vary. I agree to drink lots of water and take Claritan if possible. I can usually handle Zometa just fine although sometimes a day later I feel a little off. If you have it done on Friday and are off on Saturday that should work. The infusion itself is no problem even now. I can drive myself fine.
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NicoleRod, I am still on Ibrance/Letrozole. It took 9 months to get to NEAD. Slow and steady. Stable is good, too!
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Dutchiris – My first Zometa infusion was fairly benign, until about 6 hours after. That's when I started to feel awful. I got flu-like symptoms with no fever. I had chills and felt just miserable. It lasted for about 24 hours. Please be prepared for that. It usually happens the first treatment. After that, I was fine. I was only on Ibrance for 3 months before it failed for me (I became TNBC), but I just felt fatigue. The first month was fine. It was months 2 and 3 that I started to feel the effects. The other ladies will be better to answer your questions about SE. Oh, about working full-time. I work full time still (I am only 42 and not near retirement). I am active on my daughters' school's PTA. It's a matter of pacing yourself. But everyone reacts differently to medication. I worked full time during my first go around with BC. And I was working about 50 hours a week. Feel free to PM me if you have any questions.
Moomla – Sorry about your mixed results. But I would take it as a win. Things aren't progressing (fast). And yes, it makes sense. Please give the treatment a little more time.
Nicole – Ibrance stopped working for me after most likely the first month. I think it killed all the HR+ cancer cells, leaving all the cells that weren't HR+… as now I am TNBC. So I wish I could tell you I had a HUGE positive response to treatment. And can I borrow your dog – need to know if the cancer is gone… maybe save myself some money and won't have to get another CT scan!!
Ciaci – Just going back through the old posts… to answer your question about differences between off/on weeks. I felt worse on my Off week. I felt better the first week I was on Ibrance.
Pat – Glad your luncheon speech went well! You sure rocked it! Love the picture of your granddaughter and your frosted/candled head! My MO and I talked about off-brand non-standard care drugs… and he's going to put me on Keytruda. I asked him which immunotherapy drug he was thinking of. So there you go!
Philly – How is the foot pain?
Gumdoctor – How are you feeling?
Intothelight – Asher, is so cute!
Lauren – thanks for sharing that blog and the app. So interesting, as I am now TNBC and will perhaps be starting immunotherapy soon. And I'll have to look at that app.
Novagirl – That's great news on your scan! Hurray for LTD!
Faith – how are you doing?
Candy – So sorry about your MO. That's just plain crummy that she doesn't have time to talk to you. You are paying for her services and you should get your due time. If it were me, I would be shopping for a new MO. This is your life that she has in your hands and if she isn't taking it seriously, then it's time to find someone new. You should be able to talk to her about new studies. And she should take the information you give her and research it for the next time you come in for an appointment if she doesn't have the answers. And then to say she only treats your cancer!?! She must have been having a bad day. The doctors should be synergizing with each other. At my appointments, most of the time is for my questions. He knows that I am a researcher. I bring up studies. He answers them to the best of his knowledge at the time, but I think he enjoys the challenge. He is a research doctor, so I think I got lucky to get him (fourth MO). My previous MO… she was good. She was up to date on current research studies, but I don't think she was as knowledgeable, nor a go-getter. I would have to bring it to her attention and ask. But she always took time with me. The MO before that (when I was stable) was also a researcher – but I didn't have active BC with him. He is now researching at UCSF. And my original MO just treated me and then left about two months after I finished original BC treatment. He was "on loan" from the VA Hospital. LOL. But back to my current MO, he is great. He knows I like to research and ask questions. If you do shop for a new MO, I would make sure they are researchers. Look up his/her bio on the hospital website and see if they are active in any studies. BTW, glad your CT scan was stable. Hurray!
NKB – chocolates! I totally forgot to bring my MO a special treat today!
Airlinegal – Sorry about the scanxiety. I will be thinking only positive thoughts as the date grows closer!
Divine – take it easy. Usually the fatigue and lack of stamina is due to lower red blood cells, hemoglobin. You may be slightly anemic, which can happen on Ibrance.
Daniel – I have not heard of devils claw. Do I need to sell my soul to the Devil in order for it to work? HAHA
Karen – yea for retirement!
I saw my MO today… and it's been good news. He can't feel the lymph node in my supraclav area. He said he can't hear any fluid in my lungs, so the pleural effusion has resolved itself. I will go in for a 3 month CT scan after labor day. I see him a few days after that. At that point we'll discuss immunotherapy, which will be off label – Keytruda. He is really happy that I am responding well to Lynparza. He said my CEA tumor marker has fallen. Apparently it was 16 last month and now it is 4. I never ask about those test results. I guess "normal" for a non-smoker is 2.5 or less. So I am getting closer! Woo hoo! I don't know what it was before that. Hope everyone is well. I hope to be seeing more good news!
Sorry for the long post - I hadn't checked in awhile.
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Holly, wow, I never thought of the fatigue being a resukt of lower red blood cells. Thanks for mentioning that it may be a possibility.
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Holli you said that it probably stopped working for you after 1 month...do you think that because at your 3 month scan you all knew it didn't do anything? Was your first scan at 3 months?
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Holly, you win the Word Count Award for the week! How lovely that you went through and responded to so many folks. I always intend to do that and don't. Thank you for your kindness!
I'm so happy about the great Lynparza results and the coming Keytruda!
I'll be praying for nothing but good things from that September scan. I'll be getting one then too.
Love from PatGMc
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Divine - yes, I asked my old and new MO about why I was getting tired and pooping out so early. When I got my CBC results back, by RBCs were slightly low. In addition my hemoglobin was slightly low. Take into account my red blood cells were becoming more misshapen and aren't as effective transporting oxygen around thing that is the red blood cell morphology. Worth a look to see what your counts are and to ask.
Nicole - I think it was working at first. My initial biopsy showed 70% ER+. My second biopsy after my 3 month scan in June came back HR-. My BC turned heterogeneous. My MO said it most likely worked at first and got all the HR+ cells and left the tumor cells that didn't respond to multiply. Also my new MO says depending on where the biopsy is taken, you can get different results. Yes, my first scan was 3 months after I started treatment.
Pat - thanks for the award! I had a little time on my hands tonight. Husband got home early and was entertaining the kids. MO says he will put me on Keytruda because the Tecentriq is only FDA approved with chemo. With Keytruda, he knows the insurance will deny it a couple of times, but then the hospital will kick in and pay for it - or something like that. Hopefully I can pioneer something for you gals! Especially with that new PARP study that shows it can be good for more than just BRCA+ patients.
Jaycee - I am so happy the PE is gone. Thanks for all your advice! Hope you're doing well.
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Holly, I've looked up symptoms of low red blood cell count/anemia and voilá! I have numerous symptoms and had not been able to determine what the cause was until now, realizing it may very well be anemia. Symptoms include fatigue, as you said, as well as weakness, which I definitely feel. Sometimes when I go to stand up, my thighs feel like they want to give out on me, although they haven't.
Other anemia symptoms include shortness of breath, which I get after climbing stairs, and heart palpitations, and I've observed my heart beating faster than normal.
I get bloodwork done next Monday before I start the next bottle of Ibrance, so I'll be checking those numbers. I do take a multivitamin, but also will try eating a few more foods that are supposed to help with anemia like beans, strawberries, tuna, ect.
I feel some relief learning about anemia and its symptoms rather than thinking bizarre thoughts like why is my body so out of it, what is the matter.
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Hi all,
Catching up since I usually only check the boards once or twice a week. Glad for those with good news!
I've been on Ibrance with letrozole since the end of March 2018. TMs went down and scans good.
Now, however, TMs are rapidly rising. My doctor is going to keep Ibrance for now and change me to Faslodex and stop the letrozole. Have any of you had this combination in this order? If so, how did it work?
I think he was going to ditch the Ibrance too but I told him he would have to pry it out of my hands LOL. So, we're making this change until Oct. Scans again at the end of Aug, as usual. Fingers crossed.
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Muddling- You are changing treatment based on the TM's alone?? -- Scans due end of August. I ask because I thought several on here have posted that scans override TM levels. And we change treatments based on scans NOT just TM's. My TM's have slightly risen in the last 2 months. My MO commented on that fact. But she also said my insurance would not scan any sooner than the 3 month protocol EVEN IF the TM's doubled in a month. She even suggested we stop running the TM's monthly (out of site out of mind thing). If I were you, I would want to SEE progression based on the scan results. And how about testing to see if ER/PR/HER2 has changed. See this is all so confusing on how each MO handles possible progression. How are you feeling??? Any symptoms something is going south?
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Candy, the scans at the end of Aug are on the regular schedule. Also, TMs for me are indicative. They have *never* gone up, not once, from my first taxol in Jan of last year until June of this year when they doubled, then tripled at July blood work, then doubled again this last month. I am confident that my doctor is right.
Edited to add that I asked about testing the cancer to see if it has changed status and he said we may need to look at that this fall if this slight change in treatment doesn't help. I think he's humoring me to keep on trying the Ibrance and I like him for that.
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good advice from Candy!!! I'd say show me the data!!
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Cure-ious, the data is that TMs went from 112 in April to over 1,200 at this week's blood work when my TMs had never gone up, not even a tiny bit during monthly tests. The first increase or two we were just "watching" as possibly being just odd blips. Unfortunately it's a real trend.
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Thank you Cure-ious for the pat on the back!!! I take that in high regard because I know you are very knowledgeable and I trust you. So, I am asking you your advise about why MO's do things differently in regards to possible progression. When I progress, do I insist that we retest for ER/PR/HER2 status or just go with next "standard" step- my MO has said change to Ibrance/Faslodex next. ????
Muddling- That is a BIG jump in TM's!!!!!! And I can see your MO wants to change treatment NOW rather than wait for scan in another 2-3 weeks. Will your insurance agree to scan a little early??? My doc says mine won't but I have not asked the insurance company myself. One would thing that large of a jump in labs would warrant an early scan. Good grief, insurance companies.
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Candy, I think that testing for changes in ER/PR/HER2 status requires a biopsy and that may not be possible or safe or worth it. That's just my tiny piece of knowledge for your consideration until Cure-ious gets here.
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Candy, the scans for later this month ARE on the regular schedule. I am fine waiting just a couple of weeks for scans. If we were trying to get them early it would take that long anyway to get approval.
After scans, if there is something to see, we might have to take a biopsy. I'm not too worried about that yet because....please don't take this the wrong way, especially the newbies....but there's no way I'm getting out of this alive so I'm not going to chase every little thing unless we get a spectacular fail with the new plan. Even then, I might not. Who knows until I get there?
I see some of you with Ibrance and Faslodex in your treatment histories. Have any of you gone from I/L to I/F ?
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Muddling- I am sorry if I said the wrong thing. I guess I thought you were posting and kind of seeking advise. I didn't understand that you are ok with the plan and was just informing us of the changes. I guess I was reflecting MY concerns and questions on your situation and you don't feel the same way I do. Sorry. I hope others will chime in and answer your question about going to I/F.
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Muddling, Never mind I see you have scans scheduled!! just checked and ESMO 2019 doesn't start till Sept 27; it seems like such a long time since we've had any major (good) news from the ongoing trials to give us some direction on what to do next.
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Do MO's generally schedule scans PET/CT every three months once Ibrance is started?
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Nicole,
I think it depends on your TMs, tumor load, etc. Mine are scheduled every 4 months. I've read some people state 3 months and some women (NED) 6 months.
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I roll with an let’s just call him “an out-of-box” thinking MO. We are in agreement to scan “if there’s any new lumps, bumps, concerning symptoms, or oddities in my bloodwork.”
So, because of this agreement, I have had the following scans:
April 2017
October 2017
May 2018
October 2018
May 2019
So seems like we have formed a pattern here. I made this choice because I feel that possibly on the future I may need lots more scans and pokes and proddings (which I really don’t enjoy!) and so I’m doing my best to avoid this as much as is practical, until the need arises.
Love
Ohilly
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But Nicole. Its nothing to do with ibrance but just that were stage 4.
Standard is 3 - 4 moths. Maybe 6 if stable. Gotta check that any of your meds are helping and there is no surer way to check.
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