Ibrance (Palbociclib)
Comments
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Hi Tinkerbell,
I know it's all so overwhelming. There is so much information out there, some conflicting. It depends on who you talk to, but some don't change their diet and take minimal supplements and they do just fine. I took it slow and started with the supplements the Neuropathic doc recommended. I added the COC protocol after I was sure I\L was working which was 6 months.
It really comes down to what makes you feel comfortable. Don't add more stress to your life. I hate researching so adding the Neuropathic doc helped me a lot. If you go that route I would make sure he\she has experience treating cancer patients.
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Candy, thank you for asking! I’ve been home a few days. It’s been quite a stretch. Not a simple story.
I started having dental pain in early September. It was clear something was going on and my dentist recommended I try a root canal. But of course the Xgeva needed to be held and I needed to wait. The pain got to the point where it was excruciating. My dentist couldn’t/wouldn’t prescribe pain meds but my oncologist prescribed Percocet. That did the trick for a while but the dose needed to be upped.
I finally was able to have the root canal but was in such a daze I tripped and fell and shattered my wrist. I needed surgery.
I’m finally mostly out of pain but am terrified that my Ibrance has needed to be held. It will be a month tomorrow
I’ve been keeping up with the board but mostly not had the wherewithal to post.
Delighted to see Mikes post and I believe Ben Jev also had good news?
Sending hugs to IntoLight and Sandibeach.
Love to all,
Penny
PS to Simone, I grimaced when I saw your dental struggles
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Sometimes this is all you can muster from the pantheon of motivational memes, my friends:
Love from PatGMC
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Penny, I'm saying special prayers for you right now....prayers for comfort and for peace. I took two months off Ibrance back when I had pneumonia. I still did well on 100mg. for a year and a half longer. You have to do what you have to do, my friend.
Love from PatGMc
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Tinkerbell...I am taking Ibrance/Fasodex/Xgeva and my MO also told me to stay away from all supplements with the exception of Vitamin D/Calcium. So that's what I'm doing.
I also try to eat organic, limit sugar, limit alcohol, limit caffeine, use organic skin care and make-up products while trying to avoid estrogenics. I wonder sometimes if all this is actually helping but I'm trying as best I can anyway. I have to add that I do have the occasional glass of wine and dessert and I have one cup of caffeine in the morning.
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Hi Penny,
Sounds like you have had one thing after another. I am getting a short break this cycle due to needing a root canal also. It's scheduled tomorrow so hopefully everything goes ok and the infection clears up.
My MO said for me not to worry, periodic short breaks should not hurt. I hope you can start ibrance soon.
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Aw thanks Pat. Your love and inspiration have lifted me from my first day on this Board.
I'm so glad you are dancing with us here and off doing the Lindy without us!
Love,
Penny
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Thanks Simone! I’ve been following your dental woes with powerful empathy!
Love, Penny
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thanks Jack5IE and Simone80 for calming words but also clarity to help place things in perspective. Just trying to get use to this new. "Normal". Lol... I want to be proactive but until my first scan perhaps Baby steps
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hi everyone! Welcome Tinkerbell 🌸 nice to “see”’ you :-)
I am waiting for the sleepiness to kick in. Tomorrow I have my monthly MO appt and Lupron injection. My blood work looks the same as always, neutrophils are 1.0 and WBCs are 2.3. My RBCs, hemoglobin and hematocrit are all low. And my MCV and MCH are all higher than normal.
Did ya know that MCV and MCH these values should increase with Ibrance use and your MO will know if you haven’t been taking it if these two are within normal limits?
Nothing major to report. Doing pretty well, life is a trip! Had some really yummy traditional southern Indian cuisine for dinner and it was soooooo good! Yum! One of my favorite kinds of foods! Nice and spicy!
I am going to request some scans tomorrow because it’s been a while and I think it would be good to have another baseline.
Hope everyone’s having a good night!
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LovefromPhilly, I had to laugh at your reference to people not taking their Ibrance and being found out.
I've had many friends through the years who secretly "forgot" to take their AIs. (I may or may not have been one of them at times!)
Other friends just outright refused because of the side effects and one oncologist told me he was going to stop prescribing them due to a lack of compliance. Instead he sent the patients hateful letters telling them they were sure to recur and he was not taking responsibility. I convinced them to dump him as a doctor and most of them have not recurred. (I add the dumping to the list of things that will help me die a peaceful woman, knowing I helped save some from him.)
Sleep tight, Philly!
Love from PatGMcRadical
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Good grief Penny !!! Root canal and a broken wrist. You sure know how to do it. Hope you are back on the mend.
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Penny so sorry for what you are going thru....hang in there0
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Thank you my wonderful friends!
Love
Penny
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Penny: I have been on Xgeva for over 6 years. About a year ago I starting having pain to my right jaw. The oncologist thought it was an infected saliva gland and prescribed antibiotic. That worked off and on for a while. Finally the pain did not go away so I went to a dentist. He took xrays and sent me to an oral surgeon. The oral surgeon determined I had dead bone and gum tissue in my jaw. The oral surgeon performed a debridement using local anesthesia. He believes he did not get all of the dead bone and tissue that needed to be removed so I think I have that to look for to at least several more times (he said it may take as much as a year). In the meantime, I have been in very high pain (am taking morphine tablets all day and part of the night and using a heating pad while I'm awake).The dentist and oncologist have taken me off xgeva permanently. To say that I am unhappy is an understatement. I feel that I am waiting for the next jolt of pain. My husband has been doing the domestic duties and everything else needing to be done. Hard to eat, sleep and/or do anything else.
Best wishes to you and yours. Feel free to send me a private e-mail with your update.
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Hi, I am no longer on the IBRANCE but I have a question for IBRANCE folks may on Medicare. i’m starting Medicare in January. I’m only 62 but qualify based on disability. I’m struggling to pick a part D plan. Sounds like each plan may or may not cover a drug especially the specialty drugs. I called one company about their plan and I used IBRANCE as an example, and they said they did cover it but it would be like $900 a month! Who can pay that amd what if I’m prescribed a drug that isn’t on my plan? We are in the situation where we don’t know what drugs were going to be on. Is anyone on Medicare and how was your IBRANCE covered?
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dorimak, my answer is probably not going to help you, but my employer made a special agreement with Medicare so the same HMO I was on while employed could be the Part D when I went on Medicare. It was Kaiser. They actually cover my medicine better now than when I wasn't on Medicare, and I have almost no co-pay on other services. I said that to give you hope that perhaps the Benefits office of your employer has a good solution for you. Can't hurt to check.
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dorimak, I'm on Medicare and took Ibrance, now take Lynparza which is the same price. Between co-pay assistance foundations and free meds from the pharm. company, I have not paid anything for either. My hospital pharmacy completely took care of applying for and confirming the Lynparza. (The pharmacist apologized that I would have to pick it up instead of it being shipped to me! As if that mattered. It's $14,000!)
My Part D plan is United Healthcare and I do recommend it. Part B is Mutual of Omaha. Again, I have paid zero on anything! I've had MBC (off and on) since 2012.
My best to you. Don't worry for a minute. Someone at your oncology clinic should be on this. If not, people here can give you contact info when you need it.
Love from PatGMc
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Wandering, you are in my prayers tonight. I'm praying for comfort and for peace, my friend.
Love from PatGMc
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Wandering- Sending virtual hugs and hope you get relief soon. That is miserable stuff.
Even good Medicare plans have expensive gaps in coverage. I paid $5K out of pocket that first year and then applied for Pfizer’s patient assistance program with help from my Onc office. It’s a lot of paperwork but worth the time. It is rare to have Ibrance completely covered by insurance plans. My Xgeva is covered by Medicare.
I met with a Senior Health Insurance Program Counselor (SHIP) to find outs the best Medicare and prescription drug program. There may be a similar agency where you live.
Question for the group...have you started having thyroid issues while on Ibrance? My thyroid used to be one of my good “parts” and now weird things are showing up. Wondered if this is another SE for long time users. 4 year cancerversary this month...
Thanks for any info
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After a recent bone scan, CT and MRI, my wife continues on Ibrance / Letrozole. She has been on it now for 30 months and it continues to work. Thank God.
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Husband11.
That is GREAT news.
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Wonderful news,Husband11!
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Great news, Husband11! And thanks for spreading hope for all of us.
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My wife is very fortunate that she was able to get Ibrance in Canada, having previously been treated for a year with xeloda. As the drug was trialed and approved as a first line treatment, and her treatment was as a second line, it would not fall under the approved category. However, at the time she started on the drug, it was not yet approved in Canada, and she instead got it on a compassionate basis direct from Bayshore, being Pfizer's Canadian pharmacy. Now, the drug is approved and available in Canada, but not as second line therapy against metastatic breast cancer. We were so fortunate for the timing that permitted her to get it.
Unfortunately, as these targeted therapies are so expensive, and medicine is socialized in Canada, the treatment with Ibrance and other targeted therapies like everolimus, are strictly limited to first line.
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Hugs and Congratulations to Husband and Wife! Gotta' love teamwork!
Love from PatGMc
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Wandering I was thinking a lot about you during my struggles. It’s so horrible and frightening. At the moment I’m starting to feel more optimistic I’ll be spared the very worst but still quite shaky. Thank you for your friendship and support!
Husbabd11 I couldn’t be more thrilled!0 -
Husband great news on your wife’s scans and continuing in Ibrance!
I was shocked about these targeted therapies and the socialized medicine in Canada.
I was talking with a woman at a breast cancer event who was Canadian. She said she couldn’t get Ibrance with faslodex only Ibrance with an AI. I didn’t quit get what she was explaining. The first line vs the second line thing. Now, your explanation makes more sense.
That gives me some pause for abolishing private insurance and having the government put us all on Medicare. Canada has 35 million citizens and the US has 325 million citizens.
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Countries like Australia, Great Britain and Canada have a national board that approves of a cancer drug based not on just FDA approval, but also on cost vs benefit. If a drug is deemed too expensive for the months it adds to cancer patients life, or is too expensive and isn't an improvement over an existing cheaper therapy (even if the existing therapy is harsher and has more side effects), it won't be approved. So the national board negotiates with the drug companies for a better deal, typically cheaper than it sells for in the states, and if they get the right price, they deem it cost effective and approved. That means that after a drug FDA approved, may take years to become available in Canada while that negotiation process takes place, or perhaps may never become available, if its too expensive.
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Husband11, great news! So happy your wife gets to continue with ibrance.
Wandering, your dental issues are my worse nightmare! I will continue to pray for you.
I met with my onc today and she is guardedly optimistic the Ibrance is still working although she wants to make sure I get my next scan no later than three months. The bone mets are still gone but there is some small new activity in the liver area she wants to check. She is also watching my blood work as it is gradually creeping lower and she is considering reducing my Ibrance strength to 100mg if things continue to slide downward. She also wanted to remind me I had the last scan taken at a new place, with a different machine and different techs than the last 3 1/2 years so the minimal change could just be that. The hospital where I used to get my scan is building a new building to house a new scanner so the change is temporary (they were leasing a portable scanner that was parked in the parking lot). I am just happy that she feels I can stay on Ibrance. Her reasoning (and her experience) is that no other medicine reportedly works as well for as long and they have harsher side effects. She wants to get as much out of this one as I possibly can with as high a quality of life as possible.
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