Ibrance (Palbociclib)
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I was able to log into my doctor's portal this morning and see my latest tumor marker results. My CEA went down one point!
While it's not a lot, this is the first time since January that they haven't been rocketing upwards. I've only completed two cycles, so I'll take that directional shift and hope it portends a downward trend. CEA is the only one that seems to be accurate as far as progression for me. The others don't seem to change much one way or the other.
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Sandilee, that is great about your CEA. It is now moving in the right direction. Yay !
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Just read about the plane crash and caught up here. We were oblivious to the happenings outside our ship! Tragic accident. Very sad.
We made it back to Ventura late last night. I slept till 10! I never do that! Pain seems to be controlled with pain mess, so should be a good day. Wish I knew what was causing the random spikes in pain.
The talk about Medicare/Ibrance copy's is frightening. I may be faced with that at the end of the year. Scary!
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This Ibrance is so hard on me! I sure hope it works! I have been on hold due to low platelets mostly (54 last week). My MO said that they need to prescribe the 125mg twice before lowering the dose to 100 per "protocol' . What? It's no longer on study shouldn't she have more flexibility? My WBCs and ANC were marginally low, but I also had a raging UTI which would bring the count up. It would seem to me that I would do better on 100mg. Why make me go through another month like this?? I feel lousy. She said that it's the phamecuetical companies and the insurance industry stopping her and "it's not like it used to be". (My 125mg bottle was already sent) Wouldn't give me Metformin either. Said I needed to go to my Primary for that even though she admitted it would probably be helpful. Really? This s**cks!
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Great news Sandilee!
Hope you get some relief soon Vivian!
Babs
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I only did one round at 125 mg which was stopped after 2 weeks do to low white count. When I re-started it was at 100 mg so all doctors must not follow that protocol. There seems to be so much variation on Ibrance some have posted staying on 125 mg with lower counts then mine were I guess we just have to triust our doctors
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Vivian, I was switched after one round. I don't know where your MO is getting this info. Myra.
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Sandilee, wonderful news re: tumor markers
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I was also switched to 100mg after one round. Strange they would make you stay on the 125 for another month, but every doctor is different. I guess because this drug is still so new, the doctors are still figuring it out.
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I'm so sorry you feel bad, Viv, My doc switched me to 100s after the first round. It does sound like she is following the original study protocol, but I don't think that's required at this point. Maybe she doesn't trust that the drug will work as well if the dose is reduced too early.
This will be my last cycle before a liver scan. I'm actually really looking forward to knowing if it's doing the job.
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As usual, I'm so behind on this thread! Congratulations for all the wonderful reports so many of you have had! It's wonderful and also very encouraging--long may this last!
Hope, welcome home!
Newbies, welcome!
And Vivian, feel better soon! I, too, went directly to the 100mg after my WBCs tanked on 125mg, but I wonder if the difference is that yours is platelets not WBC? Maybe the protocol is different in that case (just a guess)? My onc showed me the Ibrance info for doctors when we were talking about the protocol for WBC, there's a booklet that spells out all the if>then things. Maybe you could ask your onc to show you the protocol so you're not left guessing about what happens next?
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Thanks you guys for giving your input. i really do appreciate it! I think you may be right, Roses, about the reason being my problem is platelets, not WBCs. I am going to ask to see the protocol next time I see the doctor. That is an excellent idea! I have also made an appt with a holistic doctor to balance out my medical needs. I was using a very open minded GP, but I have moved and his office is no longer convenient for me to go to (2.5 hr drive).
Sandile, good luck with your liver scan. Happy to hear about your tumor markers!
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Vivian, breaks my heart to read how difficult this protocol is on your body. Is your week "off" coming up soon? Maybe those 7 days will help your body refund its balance.
I am still on cycle 1 but the specialty pharmacy called tonight to schedule my next delivery. Evidently, UPS won't be delivering over the long weekend, and of course their office will close as well, so they are making this month's calls early. One less thing to worry about.
Not doing too badly overall. The most annoying side effect, the sore/burnt soles of my feet, seems to have taken care of itself and I am being careful to always wear the Teva style sandals I own since they have some bouncy padding.
*susan*
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Romansma - I saw my oncologist today and asked her the medicare question re: Ibrance - I have just started Naelbine (Xeloda failed) but Ibrance will be the next step for me so I watch this thread - she said she has patients who are on medicare with supplemental part D that are getting it covered - she said she would look into which insurers they used and which part D plan they had - I am learning there is a huge difference between plans and companies - I will let you all know what I learn. So glad you are safely home and had a good holiday. Susie
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Susan, Thanks for the concern. I think part of the reason I've been feeling lousy is from the- indirect effects of Ibrance. For example. My suppressed immune system laid way for a urinary tract infection complete with the symptoms and an antibiotic that made me very nauseous. My hemoglobin is 9.0. Although this is "acceptable" for us, it is too low for normal ppl and its making me still feel SO tired!. The general stress on my body has caused an outbreak of generalized ecxema (itchy!) and cold sores on my face - never mind the major bruising! To top it off! I am having awful pain in my lower back and hips. Can't tell if it is from the Ibrance or my mets in that area.
Hope this did not come out like a rant! I think these side problems are the nature of the beast. Can I deal with them? Sure! But as we all know that does not always prevent that lousy feeling. I get my labs tomorrow and.am hoping for an improvement.
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Hi Susan,
I'm struggling with sore burning soles as well. Tonight my feet seem a bit swollen too. I've also been getting an odd prickly/tingly sensation in my arms that comes and goes. The weather has been very warm here so maybe that's playing a part. I have felt lousy the last couple of days, tired and achy and not able to sleep well. I'm looking forward to my first "off" week.
Celeste
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Good Morning All,
I am unable to start Ibrance yet because my WBC is too low to begin with. I've had 4 separate rounds of high dose radiation to my spine (twice) and ribs (twice) so low WBC will always be an issue for me. DId most of you start out with WBC closer to 9 or 10?
And one more question....are most of you on Letrozole in addition to Ibrance? Anybody on Faslodex and Ibrance?
Addressing the bone pain spikes.....I get those a lot and my MO said they can be due to flare ups from the Faslodex or AI's. But I have a lot of bone mets which are now in my hip as well so hard to tell sometimes. I couldn't walk very well for the past 3 weeks but that was a direct side effect of Zometa.
Viv, Celeste, sorry about the side effects. It's good that we can share what we are going through. I know it helps me. Linda
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cenglish,
Not to be alarmist, but swelling in my feet was one of the things that my oncologist insisted that I call her about. Have no idea why, but thought that I should pass that along.
*susan*
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Vivian, I am so sorry to hear about the problems you are having. I know that stress can be a real horror. DH and I were just discussing that last nite. Do you have someone to talk to? A therapist? I am so grateful for mine. I decided the stress of the constant blood work and numbers games is making my stress explode. Having my scan Thursday, so I will know if pain spikes are from the femara or not. Can't see MO til Monday because of the holiday. More stress, but I decided I was not going for bloodwork but once per month. I can't handle this anymore.
I never started with WBC at 10. That's why I told Susan I would be dancing in the streets. I think I started at 5. There you go, more numbers.
Cenglish, I agree with Susan about feet swelling. It has to do with blood clots. Please call today.
To the rest of you, hugs and good wishes for a great day. Myra.
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Feeling better this morning. Amazing what sleep can do for your mind and body. No swelling in my feet this AM so I'm sure it was the heat, but I see my Dr tomorrow and will definitely bring it up first thing. I'm so grateful for this thread. Having MBC can be very lonely. I stopped going to my young survivors group several months ago, I know I was their worst nightmares come true. It's great to be able to share with others who are on this @$#! journey with me.
Celeste
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Celeste, I get the arm tingling/prickly feeling too. My doc wants me to try gabapenti
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Susie, thanks for checking on the Medicare question. I'm not on Medicare yet, but will probably sign up towards the end of the year. I think it would be good to have info here about the differences in the plans for those on Medicare and those about to begin their coverage.
lindalou, if you are at 9 or 10 for WBC now, you should do well. I've had a lot of radiation too, but I started around 2.8. I hang around 1.1-1.8 now depending on where I am in the cycle.
Vivian, sorry you are having a hard time. Maybe it's just a rough start and things will even out. I, too, am very fatigued much of the time. Hemoglobin isn't in need of a transfusion, but it's on the low end and probably the cause of my sluggishness. I had a copy of the protocol at one point. I will look to see if I still have it.
Myra, hang in there. I am sooooo with you. The pain spikes are very confusing and worrisome. I think I am starting to cave on holding out without a scan. I had 3 intense days on vacation that really had me wondering what could be wrong. They were not consecutive days which is even more bewildering. It seems others are having increased back and hip pain too. Maybe there is something more to the side effects, or even a drug combination. Who else is having increased pain? What other drugs are you taking, ie. Xgeva? Also, the pain is concentrated in my back and hips, but by the end of a spike day I ache all over and feel almost feverish. Anyone else feel that at times?
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Yes Hope sometimes I feel feverish around 4 or 5, take temp and it is normal. My pain also is limited to hip and side. Sleep well though and sometimes get numbness in leg. Xgeva is my only other med. just got the call from tech reminding me about PET scan (like I could forget). Thank you for all the love and support. Myra.
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Romansma and Myra, i hope you find relief soon. I have a lot of pain in my hips and spine and ribs but mine are due to mets and Zometa. I know what you mean when the pain is intense. It's hard to breathe. I try very hard not to take Vicodin but when I do, it helps a little. Xgeva gave me intense bone pain too, so I tried Zometa. Actually worse on Zometa. I get aches and moderate pain on Faslodex, which I've been on 4 years now. I finally caved in and took a Vicodin yesterday which did little. Tried an OXY which helped quite a bit, but I hate taking those opiates, so I only take them when I truly can't stand it. I also have fractures in my ribs and vertebrae so a lot of my pain stems from that.
My WBC is 3.8 right now and that is without starting Ibrance so I'm a bit worried about that. I will get new counts next week.
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Interesting to know you get that achey, feverish feeling late in the day too, Myra. It isn't every day, but usually after a long day of intense pain.
I am on Oxy around the clock and on the high pain days I am taking it every 4-5 hours to little effect. I use dilaudid, but rarely because it knocks me out.
Just called my MO office to talk about all this. Will see if she has any ideas
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I am at 3.4 on day 9 of my 3rd cycle. My onc is happy with that. I started with blood work every week for the first cycle, then every 10 days for the second cycle. Onc told me today that I "graduated" now to blood work every 2 weeks and will probably stay on that. She just raves about how excited she is about this drug, I will have a scan in July and we will see if it's done its job. Had tumor markers drawn today, last month they dropped 50 points, hoping for another drop. This stage 4 is still so new and scary to me but I have learned so much from reading all of your posts here and also in the bone mets thread.
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Great news Lynwood! Hope this works for you for a very long time!
My MO had a nurse call me today and scheduled 3 MRIs. I already had one tonight. Two more tomorrow. I guess she thought it was time to figure this out too! I already feel that familiar uneasiness about scans and their potential to send me on a roller coaster of emotion.
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Sandilee and Lynnwood - great news about your counts!
Celeste - I'm another one who gets that prickly tingly feeling. It just seems to come out of nowhere sometimes.
Romansma and Myra - wishing you very best and hope everything goes well with the scans.
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Saw my MO yesterday to discuss my PEt scan results. She says the uptick in activity in the 2 areas on my spine are not definitively BC. She wants me to stay on the Ibrance/ letrozole for 3 more months in the hope that it will be effective for me. Feels 3 mos on it isn't enough time. But my bc blood markers have increased every month!!!! Doesn't make me feel very confident. I'm trying to stay strong and positive but!!!!! This bc is a major roller coaster ride!!!!!
Re Medicare part d and ibrance. Yes they do recognize and cover the ibrance. It's just that the copayment can be ridiculously high. And if you're on part d then you are NOT eligible for the Pfizer $10 co pay program. You can be eligible for pfizers need based program where they pay the entire copayment if your gross pay for a family of 2 is under 79000.
Romania and Myra good luck with your scans!
Babs
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Hope, I hope all goes well for you. A lot of things happening around here lately. Hello and welcome to all the new women on this thread.
Scanxiety is kicking in quickly. Yes this Ibranceland is a roller coaster of immense proportions. This dx is also a major roller coaster of numbers, markers and scans.
Good luck to all having scans and bloodwork. I am so grateful to have you all. Myra.
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