Ibrance (Palbociclib)
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What does PAN stand for? I have the same payment schedule you do, Janet, and I'd love to know how to look for grant/foundation money.
Thanks!
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PAN is the Patient Access Network Foundation. Here's the link:
https://panfoundation.org/index.php/en/
Then there is PAF. Patient Advocate Foundation.
http://www.patientadvocate.org/
Your MO's office should have a person who deals with this stuff. There are other foundations. The PAN person I spoke to told me the name of one other that has "cancer" in the name. I forget what it is.
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Good luck in your new treatment nbnotes. Hoping they find the right treatment. Sending prayers your way
Nonahope. Sorry your bone marrow biopsy was so awful. They can learn a lot from it. Hope you get good reports.
JFV I’ve been grinding my teeth to. Never thought of that.
Janet you have given us great information about grants. I never knew that was possible. Thank you.
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Marie 67. I was surprised and actually pleased that my hearing problems dizziness, aches and pains are partly due to TMJ. I've always ground my teeth at night. ENT noted that a lot unhappy things happened to me in October. So I have probably been clenching my jaw more than normal. I'm on night 4 trying to wear a bite guard. Can't make it through the night with it on yet. Hoping Ill get used to it soon and see some improvement
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Nonahope, I'm so sorry that bone marrow biopsy was so awful for you but pray you get good results.
I saw my MO and it looks like I'm about to take a longer vacation from Ibrance than I thought. He thinks we can just use letrozole until I show some progression and then go back on the Ibrance at that time. I guess this is good news but I'm kinda scared to get off that train. My tumor markers are in normal range which is great news but there are two areas of concern that showed up on the PET scan. As PatG called it, my pain in the butt cancer is requiring me to have a sigmoidoscopy which I'm dreading on Tuesday. And the inflammation in my lung needs a closer look with a more focused CT which happens next Thursday. He doesn't believe either area is breast cancer though so that's hopeful but I'm still worried. Scanxiety goes on. I'm also going to start on Prolia for my bones so need to read up on that to see what to do for any side effects. I've heard it makes you feel like you have the flu and I still need to get my flu shot. UGH!
Sending prayers and hugs to everyone here.
Faith
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Faith, I will have my 5th subcutaneous injection of Proliain January and I have never felt a thing following it. Just another appointment twice a year along with a bone density test once a year at the same office. After my first year I had a 4.5% increase in bone density. Even though I am no longer on Anastrozole, my MO recommends I continue with it.
Marian
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I'm glad JFV. I'm hoping for you, too. I also grind my teeth and wear a splint the dentist made especially to fit my top teeth because I tried those ones you buy and then put in hot water and mould to your teeth yourself. Turned out the adult one was so much too big for me I couldn't even get it into my mouth! I tried the youth size one - also miles too big! So I tried the one for under fives - it fitted! but didn't quite reach to the back of the molars on one side. This story is turning out to be like Goldilocks and the Three Bears hahahaha except that Baby Bear's porridge wasn't even quite right! The one the dentist made is "just right" as Goldilocks would have said!
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Janet, many thanks for the information on the grants/foundations. I had no idea. I'll find someone in the MO's office to talk to about this.
Faith, hang in there! I'm betting that you'll get good news from your scans and your scanxiety will happily have been for naught! It sounds as though Marian's experience with Prolia has been a positive one with good results.
And Leapfrog...love the new photo!
Hugs to all!
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Good morning...
Faith...You have a busy week coming up. I am praying all goes well with your scans. Have you ever been on any medication to strengthen your bones? Last month my onco mentioned X-Geva if my insurance would pay for it. This month, I suppose because my appointment was focused on my biopsy, it wasn't mentioned. It makes me nervous not being on "something"...I doubt my OTC Calcium/D3 does a whole lot. I haven't had my flu shot either.
Janet...Thanks for the Foundation information. I don't know what I'm getting, but so far so good.
Maire...Thanks for your support. I'm praying a lot that my biopsy report isn't anything earth-shattering.
Wishing all a good weekend!
Hope
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Faith, like Marian, no side effects from Prolia. I was on it for about three years.
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Faith..also no SE from Prolia injection for osteoporosis. Aledronate (weekly pill) stopped working due to the AI.
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Janet, my original grant was from PAF! It got me in and out of the donut hole, but I still can't afford even 5% of Ibrance so Pfizer was sending it to me until this grant. What I found was that foundations that didn't have money would tell me about others that might which was how I found PAF. These foundations are primarily funded by big pharm.
Faith, I've been on Xgeva (same as Prolia, just more, more often) for a year now. My primary side effect has been energy! Wish I had that side effect with everything.
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Thank you all so much for the encouraging words about Prolia, I've been nervous about it along with everything else. I suppose once you have cancer, it's hard to think about anything else but cancer causing us problems. I so appreciate your thoughts and prayers and I continue to pray for all of you especially those waiting for results like Nonahope.
Hope you all have a nice weekend. It's raining and cold here. Not cheerful weather. I need some sunshine. Hope it's sunny where you are.
Hugs
Faith.
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I started my Ibrance / letrozole therapy this week, i'm 3 days in and it's Saturday... and I have no motivation. My stomach is a touch query but besides that i'm good. Is this no motivation a side effect of the vibrance?
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Faith, I am praying for you. That sigmoidoscopy will be over and done in 15 minutes. I sing hymns when I have things like that. That test should be good for about 8 rounds of How Great thou Art! You can do this!
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Tina Marie...My guess it's the meds causing that "no motivation" feeling or "fatigue". I had the queasy stomach a few times. After the first completed round, things calmed down quite a bit. I'm on round 5 and my side effects are practically nil. Hang in there!
Hope
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leapfrog Thanks for the bite sizing info. I guess I'm a big mouth because the one I bought seems small. I need to tAke another trip to the drug store to see if I can find a bigger one.
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JoynerL...It's a photo from about ten years ago before I started to become ill. I thought it would be nice to have that as a profile pic to remind myself of happier times when I post....and thanks.
JFV....I'm glad if it helped but it probably depends on the brand. I do have small, delicate features though, and not a lot of teeth since I had to have two iffy molars removed before I could start on Denosumab.
Tina Marie.....yes, it could be the Ibrance. Usually though the lethargy happens at the end of the cycle but it can make you fatigued and unmotivated at any time. You need time for your body to adjust to it. Strangely, although this is my ninth cycle, I'm feeling more tired than usual and I'm only on day 12 of the cycle so it also depends on other factors like stress or doing a bit too much as to how fatigued you can feel.
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Don't we wish it was Vibrance!
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Faith, I've been on prolia for a few years and only SE I experience is hot flashes.. but only on occassion.. the injection is also not difficult.. I have it in my stomach... sending you encouragement this week.
I think my mix of Ibrance and faslodex are working.. too soon to tell after only one cycle.. my white blood count is very low and so onc is trying to decide to keep dosage at 100 mg or lower to 75 mg. Tumor marker finally going back down and symptoms improved so I hate to lower it...
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Pat, thanks for your prayers! Since I sing in the church choir, I'll have to try that "How Great Thou Art". Very appropriate.
I have a question for those of you using Medicare Part D for your drugs and also on Prolia. Does your Prolia get billed to your Part D insurance or directly to Medicare and it doesn't cost you anything except the copay of 20% or in some cases nothing if you have a supplement plan which we do.
The reason for my question is as you all probably know it's time once again to look at our drug plans for next year. Every year, I think no problem since no changes in meds. Wrong, it's always something. Prolia looks expensive.
Faith
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Faith, Prolia does NOT get billed to drug insurance. It is like anything else you get in a doctor's office. (chemo, etc.)
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Thanks Jaycee for the quick answer, that saves me a phone call and another worry.
Faith
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Faith, I take XGeva in the chemo room. The drug price + the injection cost are over $5500 and I have never paid a penny. 100% paid by Medicare + Supplement, thank goodness! I would think Prolia would be the same.
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It would be so cool if these weird snapping sensations I feel in the skin mets on my ex-breast were the last screams of these cancer cells dying ...
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Amarantha. Beautifully said, perfect visual. I have two ex breasts but no skin mets, thankfully. I do have lung, chest and liver mets. Liver mets got zapped by y90, others are getting better with Ibrance/femara.
Since I started back on TX after 3 week break, I continue to have SE like I did back at the beginning of my TX back in January. I'm ready for this newness to wear off and go back to where I was before the break. In fact, I missed an important event because of it. My grandson, age 6, had his first gymnastics meet and I wasn't able to go. Grrr that's unacceptable. I did get to see video and he did great.👦
I am taking the antiviral for the lip sores but I think I need an antibiotic, too. The congestion seems to have turned into a sinus infection with headache and bloody discharge. The joint and muscle pain will get better with time but I don't want to miss anymore grandchildren events. My granddaughter will be in a play at her new school. You know I will not miss that! 👧
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Another source of funds for meds:
https://www.cancercare.org/financial
Shoulda looked first. They have no money for BC or MBC right now. I'm just saving the link for future reference.
They also do this:
"Helps with treatment-related costs, such as transportation, home care and child care. View available assistance and eligibility guidelines."
And helps with this:
"Pain and anti-nausea medication, oral hormonal medication, lymphedema supplies and durable medical equipment"
(Mods, there should be a place on the site for this stuff. Is there already?)
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PatMcG and Jaycee, thanks for that info. One less thing to worry about. I am very fortunate to have a good supplement to back up our Medicare and worry about those who have to fight this disease without sufficient resources. It's tough enough just fighting this battle without the additional worry of insurance to cover us.
Faith
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I am on week two of my first of Ibrance/letrozole. I have been on Letrozole with the zoladex (until I have my ovary removal surgery in Dec) I am also on Gabapentin for the hot flashes which have been terrible. I am getting pretty bad fatigue. Any tips or advice? I know the low blood counts and I try and help it out mainly taking and eating foods rich in iron because I am also anemic. The only other thing my oncologist told me was hair thinning and it could make me nauseated. Other than that was it.
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The exemestane/ everolimus combo was the new choice for me after a small progression. I wanted to wish all of you the best on your Ibrance combo!
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