Ibrance (Palbociclib)
Comments
-
Jen - My brain and my nerves haven't been on the same page since my scan last week. Can't focus on anything. And it was a good scan. I think your TM's don't mean much but the brain can get the information, the nerves do their own thing. Hugs. Doing something positive is the only way out of this head game ... swim, eat well, show up for work, hangout with your son.
Hoping to jog and get to the sauna tomorrow, yoga while my daughter is in swimming.
>Z<
0 -
I love that movie!!! "Just keep swimming,just keep swimming". That is kinda how this cancer thing is, you just gotta keep moving. No matter what Jen you're not alone at all, we all have those same feelings, some days are just plain better than others. I send prayers to everyone here and thank you for sharing things here to make sure every woman (And a few men) knowthat we are not alone. I am wishing everyone a pain free Monday and a wonderful week. Gentle hugs. ~M~
0 -
Trying to get a vacation override with the insurance to get my Ibrance one day early. They said it could take 7-10 days. Would have it for my regular start up time before then. Lesson learned. Plan a vacation around your Ibrance. Very frustrating
0 -
Dianarose, that's interesting. I spoke with my specialty pharmacy (CVS), who called to check on any new side effects and she said that if I had any broken or damaged capsules to call and they would send me a replacement capsule. CVS sends me a text to reorder every 21 days. I told her that I am experiencing sun sensitivity and she informed me that they have received several complaints about this. Just 10 minutes in the sun and I break out in a rash with welts on any portion on my skin that is not covered.0
-
Cheryl- the sun hasn't been out long enough in Maine to know if I will be effected by the sun. It's always cold and rainy 😡. I got a blistering rash on both of my feet when I was on the Taxol and A/C I fusions. Still have it. MO has given me two different prescriptions and neither are working. Looks like I have shingles's on my feet.
The insurance company is the one giving me a hard time about getting my Ibrance one day early. They act like they we take these drugs for fun, not
0 -
Dianarose, Is the specialty pharmacy willing to send your Ibrance to your hotel or wherever you will be staying on vacation so you are assured of getting it on time? My SP was willing to do that last fall when my DH and I went to Hawaii. As it turned out, my blood counts were still too low, so I didn't need it sent anywhere, but they were definitely willing to do it. I had also checked with the hotel to make sure they would accept and sign for the package, and they were. This might not be acceptable under your circumstances, but I thought I should mention it anyway.
Lynne
0 -
Dianarose, another thought might be to have your onc give you a sample or two to compensate for the days you'd be late receiving the shipment.
0 -
My nurse friend retrieved the results early for me, and she got me copy of the results. So I wouldn't worry. The results said the spot on my back has shrunk and there is no additional soft tissue lesions in my chest or in my liver or abdomen at all. I am considered stable with no new areas showing. Thank god. Thank you all for helping me with through My scanxiety! Such a horrible thing for all of us to have to go through. Continually praying for everyone and some great results for us all. 💜 ~M~0
-
Such great news Michel. Must be a great weight of your mind.
Sarah
0 -
Oh, Micmel....hallelujah!!!
0 -
Micmel - How wonderful! That is the kind of response we want to see at this stage ... shows we have a good treatment match for your cancer. Should work for some time.
Cheryl - Sun sensitivity is an interesting side effect, and not surprising. Ibrance does seem to do all kinds of things to the skin. Something to be aware of coming into the summer on this stuff.
Hugs everyone.
>Z<
0 -
Micmel, what wonderful news! I'm thankful our prayers have been answered for you and that the cancer is shrinking even more right this minute! Have a wonderful week celebrating.
0 -
Great news Micmel!!
0 -
Lynne- having them sent to Pennsylvania is our next thought.
Joy- I am not sure if my cancer center has any samples but I can ask.
Micmel- hurray for good news 👍
0 -
Great news Micmel. So happy for you.
0 -
Here in Manitoba, Canada, the end of eligibility for Ibrance on a compassionate patient basis is the end of this month, May. So if anyone is sitting on the fence about this, their oncologist must get approval before the end of this month. That doesn't mean the drug isn't available any longer after the end of this month, nor that you have to start taking it before the end of this month. Merely that Pfizer will no longer be taking applications for accessability on a compassionate basis after the end of the month in Manitoba, and possibly all of Canada.
0 -
micmel so happy for you. Stable is our new favorite word! So seventeen months,on Ibrance got this result for you. Z was your scan stable, too?
0 -
Z is the 17 months. I am on month six. Hoping for a heck of a lot longer. This is scary stuff. I hate the idea of it all. None of us should have to deal with this!! Hugs and prayers goodnight ladies ~M~. If I am correct her scans were also good! Hopefully she will chime in as well.
Thank you everyone for the well wishes and prayers. You truly all helped me through this scanxiety part of this scan. I thank you for welcoming me and being part of my hope and my posse! The BC posse!! Hugs for all! Prayers as always for everyone ~M~
0 -
Micmel- Excellent news!!! MJH
0 -
micmel, that's great news! I'm so pleased to hear good news.
I'm on day 11. I have had no major side effects at all thankfully (ibrance and faslodex). Only dry lips really. I'm feeling very guilty as on Friday night i joined friends for a wonderful engagement celebration. I had a couple of drinks, okay maybe more than I should have. I'm not a big drinker at all although I do have the odd glass of wine with food and if I'm out with friends. I think I just needed to feel like my other friends and have a cancer free night. I was frantically googling if alcohol interferes the pathway of this drug but they only mention grapefruit. I'm aware alcohol is not a healthy choice. I do eat well and excerise (mainly walking) but feel lately I am comfort eating and reaching for sweet stuff instead of my normal healthy options. Maybe I'm not feeling hopeful about this treatment or I've just been having a couple of bad weeks and then I feel guilty as I know I'm very lucky to have this drug. It hard as i beautiful 6 year old son and husband to live for but somehow I'm feeling I'm being rather wreck less. Going for bloods tomorrow and extra faslodex booster shot halfway into cycle. Sorry for the ramble...but if you guys don't understand no one will!
0 -
Mae~ i understand how you feel. My problem is i am not very hungry. This a lot to go through, try to give yourself a break. No one has a blue print on how to go through something like this. I know we all are thankful for this medicine but it doesn't take away how we feel everyday. Just try to make good decisions most of the time answers allow a few treats and rewards for all the hard work you're putting in walking and fighting for you lovely family and precious six year old. I am always praying that someday soon we are able to to hear. Cured and never need to worry again. Hugs ~M~
0 -
Have to head to the hospital this morning to have my naphostomy tube changed out. Not looking forward to all the shots in my back. They really hurt. There has to be something they can do to get rid of this dam thing. Going to talk to MO to see if she thinks it's possible to go in and remove the cancer in the area causing the problem.
0 -
Diana~ enough for you already my dear!! Geeze!! I hope that you hear what you would like to hear, and they remove that crappie painful area causing the pain. Sending prayers!! Hugs ~M~
0 -
Dianarose, I hope your MO comes up with a good plan for you. I know how uncomfortable you are and how difficult it must be to go through the procedure to change your naphostomy tube every month. I am thinking about you.
Michel, Congratulations on your scan results. I join you in the prayer that a cure will be found soon.
Lynne
0 -
Just got back from blood work results and feeling down. This is the second time I have to go another week without Ibrance due to low Absolute Neut counts. Sorry I just don't know all the technical terms...but it was 0.90. Do you think I am not going to be able to take the Ibrance. Have been on exactly one year. The first two months at 125 and the rest of the time 100. Minimum side effects...been lucky there (of course have lost most of my hair). I read your blogs and admire you all so much for your bravery and how encouraging you are with each other. Has anyone else experienced. Sorry to be a worrywort.0
-
Airlinegal - I know there are doctors at the Mayo Clinic, one of the main centers for the Ibrance trial, who continue on Ibrance even if ANC is .5. It's not the pfizer recommendation, but we're not really seeing serious effects from a low neutrophil count. You may have other things going on, but it something to ask about.
I also know that pajim runs up and down the stairs immediately before getting her neutrophil blood test because exercise raises neutrophil counts. You may want to PM her for details. She is in a trial where the rules are strict, but all they seem to care about is the test results and not how they were achieved
. It shows you how loosey goosey this stuff is. Finally, it's better to drop to 75mg than alter the schedule according to the research groups that work on this protocol. I can't find the reference quickly, but if your doctor needs convincing, I will. We all metabolize this stuff differently and it is possible that you are getting a very effective dose because you metabolize it slowly.
I don't think you should be off ibrance, especially if you are uncomfortable. That said, I have skipped a week or two for one reason or another and I am doing well.
Dianarose - I do not want to even know what a naphostomy tube is as I am likely to pass out at the thought. But I send you warm waves of hugs and healing.
>Z<
0 -
Diane I hope they will come up with a better plan for you than that tube. Argue for a better quality existence
Micmel congrats
Well I havent been able ti get my ibrance yet. Between orders going to wrong place and insurance not preauthorizung it or something like that. In the meantime im reading up on it and scaring myself. Neutropenia doesnt work well since I work around sick people and my biggest fear is the pulmonary emboli. How commin is that and what can you do to prevent blood clots. Thanks for any tips. Gentle hugs to al
0 -
melmcbee - Ibrance is, relative to other cancer treatment protocols, a walk in the park a far as immune suppression goes. They did not find a relationship between the neutropenia and an increased rate of infection and, speaking for myself, I haven't seen it. I have young children who bring home every manner of cold and I have not been getting sick. The general rule is wash your hands, eat and sleep well and wear a mask if you are really concerned about a particular situation. IMO I don't think that people get sick more frequently on Ibrance, but dealing with the symptoms of being sick on top of the side effects of Ibrance is tough. I find when I do get sick, I am down for the count. In the past I would power through most bugs.
I do have a weird hematoma in my thigh from a fall while trail running in december. I've never had anything like it and I suspect Ibrance. But I am not knowledgeable about the blood clotting issues with Ibrance ... I am interested in that question as well.
>Z<
0 -
I have 3 days left on my first cycle and the fatigue has really hit hard the past few days. I'm suspecting that I've dropped below the 1.2 ANC that I was last Friday. I get labs again after I have been off a week. Is that the normal routine? No fever but getting hard to do much of anything at all.
Great news Micmel
Melanie, Hope it all gets straightened out soon for you.
0 -
Air~ I am pretty sure the blood work i just got back said neutrophil level lowest should be 1.00 so you're not that far away from that. A week at most and it should recover nicely, I wouldn't worry too much about two weeks. You don't want any bleeding problems, or additional deep bruising or non healing bruises, I believe if they thought the risk was too great they wouldn't allow you to Be off treatment for a tenth of a point, they will most likely take more blood in a week or so. You're all always in my prayers.
Mel~ Ibrance has been pretty mild. Washing your hands is key and close close contact with a mask if someone is sick and you can hear it, because it does bring down your WBC counts as well as red blood counts. Its better to be safe than sorry. I caught my DH horrible cold and it was going round the house. I got it again. Because my resistance was low. It kicked my rear end. Like Z said. I have been down for two weeks. Today was the first day I've felt better. I have never heard of anyone having a blot clot and when I worked for the distribution company and with the ibrance project manager, it was a very low rated and reported side effect and I mean rare. Hair loss was also mentioned less, way over fatigue and low WBC counts were the most prevalent, easy bruising, thick white mucous, some muscle pains, and some GI upset when taken alone without food as a base for absorption. Those were the ones I saw on the reactions listing that came through with the billings for the Paloma trial phases specifically phase three as it was ending and the data was pretty solid and finalized for release to the public, which is why it was being packaged at some of our locations before I left for being sick with breast cancer. Who would have ever known I would be handling the account and Pfizer, that would release this medicine that would make me stable from cancer. Talk about full circle. Ibrance Is amild oral chemo. We are blessed to have this chance. Don't be afraid of it , please welcome it. Hugs ~M~
0
