Ibrance (Palbociclib)
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My husband thought with its cost the pills should be flavored. I want watermelon. I know it tastes nothing like watermelon, but I loved it when I was a kid.
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Miss Rabbit...I am so so happy for you! That's wonderful news! Stable Mable...I love it!
I received the result from my CT scan from my doctor. NEAD!!! I still need the bone scan result. Believe it or not the bone scan result was put into the hospital portal last night but I have yet to look at it. I want to be able to contact the doctor if need be and now it's the weekend. After finding out by the portal that I had metastatic cancer on New Year's Eve, I am hesitant now to find out anything by the portal. I'll post after I hear from my doctor.
Candy...take as much time as you need to figure all this out. It's your life and you need to do what is best for you.
I'm glad (well not really) that I am no longer alone in finding an awful taste with the new tablets. They smell pretty bad too.
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Ok. Trying to post. Having problems. This is a test.
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Candy, I see your post
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Tina2 —- that’s hilarious!! River Dance!
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I have been having trouble logging on yesterday and today. Said site not secure and wouldn't allow me to log in. Working now. Hope it continues. Miss hearing from you all.
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I had trouble logging in too. Must be BCO.
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"They call me staaaaaaaable maaaaaaable". "I'm just mad about stability and stability is just mad about me"
Yay, bc.org works today. I couldn't even get on the page the other day, kept giving me a security error like Candy experienced. Weird.
Candy, its a big decision, don't blame you for really thinking it through. I say keep mulling it around until you can confidently say one way or the other.
April, I'd like to say yes to the sunflowers but my seedlings have gotten eaten twice. My dear friend bought me a potted plant of them (smaller sunflowers) awhile back because she felt so bad ive had such rotten luck. But I'm trying a 3rd set of seedings of mammoth's but won't be mature by the 2nd. So I'm going with blush/ivory roses to go with my off white vintage floral/lace dress. Hoping a bump down will help the neutrophils to keep you dancing for along time!
I-beat-it, when its scan time for me and we make scanning plans ahead of my next monthly appointment, my TMs are never back after my regular blood work and take a couple extra days and MO will say, if TMs come back too high we can bump up a week. I did that when they made a big jump back in February. Unnecessary stress bumping up 7 days. So when this next set came up she said the same thing, if they go up we can push for sooner. I was going to decline the bump up, because already had scans scheduled and I kinda liked having that extra week to prepare for them. I think its individual based. If your comfortable just keeping your appt and having a little tiny extra time, why not?
Tina, I LOLed at the riverdance reference
On a good day I think I could do this.... Heck I'll give it a try in light of Jackie's CT results, woo hoo! 
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RadagastRabbit— loves the rendition of “mellow yellow” !!
And so happy you are a stable mable for now!
So Exciting!!
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Congratulations to the stable, and to those not there yet - wishing it for you (and for all of us.)
I'm still on Ibrance/Faslodex, for now. The last scan showed that my primary tumor (in my breast) is stable, and the mets appear to be inactive. But multiple lymph nodes have grown. Two have grown about 25%, in comparison to the scan six months earlier.
I can't face IV chemo right now. I told my oncologist I want to wait until the next scan to decide about switching to weekly Taxol. I know other members have said it's a very tolerable regimen. I live alone, unemployed, no car, and soon to be paying for my own insurance out of my savings, during a pandemic. Since the growth is happening in places where it won't be fatal, I feel safer letting my old treatment slowly fail.
On other fronts, I have walked away from my job, and gone back to my acupuncturist. I have note cards on my board that say things like "Stay on the path of higher intention." I am telling the critical voices in my head that they do not have permission to make me feel bad. I am practicing patience and forgiveness. And spending time doing things that make me feel alive. I am returning to the BCO boards for support during these lonely difficult times. So glad this community is here for all who need it.
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Jackie5IE - congratulations on the NEAD!
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NineTwelve- We are here for you.
Any other options for you but weekly Taxol? You mentioned you are on Ibrance/Faslodex now. Could they switch you to another treatment in pill form? Testing for mutations such as PIC3CA or others? Usually they move to another pill form before going IV chemo. And you have only been on I/F right? So you should have options. Being HR positive you should have some more choices.
Did you post about being denied for SSD? I was thinking that was the case, but I do not want to lose my place here trying to review your posts. What about the SSD issue? That way you have some money coming in.
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NineTwelve, I also remember you being denied SSDI. I hope you have pursued the appeal. I’m sorry you’re having to deal with paying for your insurance and having to think about changing treatments.
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LO Tina !😂😂
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Nine Twelve. My husband had colon cancer and they denied him the first time around. I appealed and told the woman that I know that she doesn’t make the final decision these things but if they denied him again, then “I think we may need a lawyer”. Don’t know if the last part helped or not but he did get approved and with back pay! Hope you try again!
PS. I don’t think they should be asking if it’s fatal....stage 4 is enough!0 -
It doesn't have to be fatal (unless rules have changed) it just has to last 1 year. I would call medicare and call again until y ou find that one person that truly cares about you. That's what I did, well, she was pissed that I was denied and went to her supervisor. The supervisor was on my side too. She went up higher until I won the appeal.
You need to go to your state programs, where you can get food stamps, and an income. (It's a small amount). You can get free rides through them etc. It's called SSI and if you can't work you qualify.
Oh please keep trying, you qualify.
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CT Scan...No evidence of interval metastatic disease of the chest, abdomen or pelvis as described above.
Bone scan...No scintigraphic evidence of osseous metastatic disease.
Thank you Miss Rabbit and BlueGirlRedState!!!
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Great report Jack5ie!! Congrats 😊😊😊
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Congrats Jackie!
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NineTwelve: My SSDI was approved immediately after a long phone interview. I thought it was automatic if you're stage 4. It's been a blessing these last 3 years. You can also work and make up to 1200 a month and still qualify. The only thing, it forces you onto Medicare after two years, which for me, wasn't better than the Medicaid for breast or cervical cancer or , which here in Minnesota had no income or asset limits. I was also very appreciative for the time I had that. Hope any attempts to retry are successful.
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Great news, Jackie!
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Rabbit I am sooooo beyond happy for you!!!!! I sent you a message.
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Woohoo Jackie!!!!
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Thank you everyone!
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Great news, Jackie!
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Woo hoo Jackie!!
I'm dancin'! 
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ninetwelve, I used to take ibrance and faslodex before progression a couple of months ago. I am going to be starting xeloda at the end of this week a tablet you take twice a day, in 13/7 or 7days on 7days off. I do not know whether it would be suitable for you, but there are other options available other than iv chemo, as i have discussed with my oncologist my reluctance to ever have that again.
look after yourself, there are lots of lovely supportive people on this thread to help you.
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Ok, I have made my decision. I am moving to new MO. I am getting labs done locally. I will do Lupron injection and Port flush locally--- order from new MO sent to PCP for co-sign and then done locally under local PCP name. Scans and office visits- will drive the 2 hours one way.
I do not see talking face to face with my current MO--my next appt not scheduled until after next scan (Sept) and she is sooo busy (she tells me) so I decided to type a letter to her. I can drop it off with the receptionist. And I asked for it to be placed in my chart as part of my records. I explained that I am not upset, that we just see things differently. And that I would like the opportunity to come back to her when I get too sick to travel. And I even asked if I could stay as a patient and be seen periodically-- as my local MO and I would still be an established patient.
I weighed the pros and cons--- tumor board access when need opinions, access to clinical trials if that could be in my future, academic center - NCI and NCCN accredited. But 4 hour trip to see doc. Good and bad.
I hope I made the right decision. One never knows what the future holds, how long I will stay stable. I hope I didn't burn the local bridge.
Thanks to all for the support I have found here.
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Thank you Serenity and Miss Rabbit!
Candy...I'm glad you made your decision. I hope you feel a big weight off your shoulders. Don't second guess yourself. This is the right decision for you right now.
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Candy, I’m glad you have a decision. You thought about it over some time and considered what’s best for you. You made a good compromise with still having some local treatment and making the drive when needed. I hope you’re breathing a little easier now that you’ve decided. 😊.
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