Ibrance (Palbociclib)
Comments
-
Good Morning All,
I'm new to this discussion and having a hard time logging in. I have to reset my password every time. Ideas?
Hope, I had a Zometa treatment 2 weeks ago and am having intense bone pain. had to take OXY last night which I really really hate to do. I'll asks my onc next time....maybe he has some suggestions for dealing with the pain. My calcium levels are ok.
I'm just starting Ibrance. Do I call Pfizer to get the co-pay card?
Myra ( that was my mom's name ) Keep focusing on August and your new granddaughter. Does your onc have suggestions?
Lastly, I had a new genetic test done. PALB2 My sister and mother and grandmother all died from breast cancer, so we clearly have something genetic going on. I am BRCA1&2 negative. I should have results in about 3 weeks. I will let you all know more as I find out results etc.
0 -
Hi Myra - I don't know as much about all of this as most of you all do, but isn't is possible that this is just a spike - I read that you have been on Ibrance/Femara since March - so maybe still early on???f and spikes possible? I read the Ibrance thread because I thought that would be the next step for me. Last scan 3 weeks ago showed major progression of liver mets and my onc feels that Navelbine is a better next step right now - she did give me a choice but I have so much faith in her I am going with Navelbine for time being. Will continue to keep up with you ladies as I see Ibrance in my future.
I hope you are feeling a bit better today - my thoughts and prayers are with you. Susie
0 -
Thank you all for your love. I may be jumping the gun, have not spoken to onc yet. PET scan on July 2. This stress is just becoming so much to bear. I am usually so strong, this disease is knocking the wind out of me. Myra.
0 -
Myra, many of us know exactly how you feel. You build yourself up to fight this fight, feel you really are doing everything you can, and then things like rising tumor markers land like body blows. I agree with apackoftwo that it could be a spike, seems like the numbers are up and down for a lot of us. I know your nerves will be rattled until the PET but stay determined. Focus on August. Focus on August. Focus on August and beyond.
Susan I've been having stomach issues too after Round 3. All the radioactive crap they make you drink to do the PET made things worse. Nerves don't help either. Been trying to keep it really bland as far as food goes these days. Just feeling really unsettled in general. Time to pull out the meditation files.
0 -
Kaydeesmiles, unsettled is the perfect term. Susan, have a smaller appetite, but very little nausea. I take the meds after a full dinner, protein carbs and vegs. Myra
0 -
Thinking of you, Myra. (((hugs)))
-Vivian
0 -
Myra, I'm so sorry you are feeling anxious and scared. We all have to be so strong, and sometimes we just can't do it. Sometimes we have to feel the fear and sadness that goes along with our diagnosis. Try to hold on until the PET when you will get some, hopefully good, answers
The waiting is the freakin' worst.
Lindalou, go to Pfizer on line to get the co pay card.
Stefanie
0 -
I've been on Ibrance/Femara since March. WBC count went down but not significantly. I do find that I am very fatigued. But I also commute 1 1/2 hours each way to work. I'm also getting bad cramps in my legs some nights (I take the meds in the AM after breakfast).
Just had my Pet/CT scan on Friday to see if this combo is working on reducing or stopping my recurrence. I won't get the results for a few days. I'm really going crazy waiting.
On Friday I also found out that after being told that I was on the Pfizer $10 co-pay program I just received a bill for over $3000 for co-pays.($500+ per 21 day period) from CVS Caremark specialty. Seems Pfizer reversed their original decision because I'm on Medicare D and nobody thought to notify me. All I can say is that the stress of having to deal with an unexpected bill of this kind together with my recurrence etc makes me want to scream!!! What kind of co-pays or special payment programs are others on Medicare D on? I need help find out how to reduce this co-pay so I can afford to stay on the Ibrance!
Babs
0 -
Babs,
I had a friend who had a similar problem with Pfizer. She called them and spoke to a patient rep who ended up giving her the medication after all under compassionate care. This is the phone number she gave me. 1-866-706-2400 at Pfizer. I hope you get some good results with that.
I get leg cramps too at night and I found drinking lots of water during the day helped.
Linda
0 -
Babs,
There is some miscommunication between Pifzer and your plan. How are you getting the drug? Is it coming from Pifzer directly or is Caremark Speciality? Call your MO office for assistance on this issue. Many have an insurance counselor who directly talks with Pifzer reps and would be able to help you to remove the $3,000.00 bill. You may need an experienced rep to handle this issue and advise you going forward to stay on the 10.00 co-pay plan.
I do occasionally get leg cramps but I start moving or doing a simple exercise and they go away rather quickly.0 -
Generally, patient assistance programs are not available to anyone on government health insurance. From this page: https://www.pfizercopayone.com
This statement indicates that Medicare and Medicaid patients might not be eligible.- The offer is not valid for prescriptions that are eligible to be reimbursed, in whole or in part, by Medicaid, Medicare, or other federal or state healthcare programs (including any state prescription drug assistance programs and the Government Health Insurance Plan available in Puerto Rico [formerly known as "La Reforma de Salud"]).
*susan*0 -
Babs,
I am on Medicare part D and receiving assistance, so again I emphasize speaking with an experienced rep who works with Pfizer to help with the co-pay. There are alternatives and hopefully the financial coordinator from the oncologist's office would be able to assist you.
The co-pay of 500.00 is the 5% on catastrophic coverage under Part D, however that is a large sum for most people in their budgets which can be consider by Pfizer.
If you need more info, look at some of my previous posts.
Kathy0 -
Kathy,
This is really interesting to me. I am not yet on Medicare, but I know that there will be many like me who want to understand how Ibrance [and other non-chemo treatments] is covered under this program. Is it being covered like chemo, or through one of the supplemental plans? Do you know if the rules are the same from state to state, or are they state-specific?
Did you talk with someone at your medical practice or Pfizer? Do you think it matters? Just thinking some private practices might now have an experienced rep on staff. And my last question, did you receive assistance due to low income or just because it wasn't covered under your Part D?
Thank you for tolerating my curiosity. For some reason, I am just not able to get my head around how all of these programs work.
*susan*
0 -
Just saw this rebroadcast on 60 minutes. Nothing has changed in the law since it was first aired last year.
I am on Medicare. And beginning to despair-- for all of us.
http://www.cbsnews.com/news/cost-of-cancer-drugs-6...
Tina
0 -
Linda, Susan, Lathy & Tina
Thanks for your input. I already put a call into my MO's office for some help and they will try from their end. I will try calling Pfizer tomorrow. I really didn't realize that when I went on Humana it was as a part d of Medicare. It's hard enough dealing with a reoccurrence of BC and waiting for the resuls of PET/CT scans. But, then to have to deal with the extra stress of being able to afford the drug that your MO says will give you the best chance of survival really seems cruel and inhumane.
I just don't understand why if we're on Medicare there is this restriction. It's crazy!!!!!
I will keep you all posted on what happens!
Babs
0 -
Susan,
When you go on medicare there are many plans to choose from and it is wise to spend time reading the various plans so your choice is a good fit. In my particular case I have a high end medigap plan with a separate drug plan. Ibrance is a drug and therefore covered in part D. However, there are plans which include drugs as part of their plan and I am not familiar with their rules.
As far as income, I am not low income, other considerations came into play,
0 -
So, this sounds as though the insurance companies get to decide if this is a drug or a treatment? My insurance company considers ibrance a treatment, so the RX co-pay doesn't apply. Very confusing stuff!
*susan*
0 -
Susan, very interesting indeed.
Tina
0 -
-
Here's timely news from today's New York Times:
http://www.nytimes.com/2015/06/23/business/cancer-...
Tina
0 -
Folks, I need your help. My 81-year-old mother has estrogen-receptive breast cancer with extensive metastasis to the bones, lungs, and now liver and right shoulder lymph nodes. She was first diagnosed in Sep 2012.She has been on many estrogen inhibitors since then, and while some worked longer than others, we are now once again being advised to change medicines, this time to letrozole and Ibrance. My mother is adamant that she will not take any medicine that causes hair loss, even if it means that her cancer continues to spread. She knows about wigs, hats, scarves, etc, and insists that she worked to hard for her white hair, and intends to be buried with it. I realize some of you ladies who have been on this letrozole/Ibrance protocol for a while already had hair loss from prior chemo, but of those of you who had a full head of hair when you started these drugs, please let me know if any of you have had hair loss or hair thinning sine then. The drug is due to be shipped Thursday June 25, so if she's not going to take it, I need to cancel the shipment before it goes out. Any feedback would be appreciated.
0 -
Fingerscrossed, I am just starting my 3rd cycle of this combo of Ibrance/Letrozloe and I have had absolutely no hair loss or thinning. I have even colored my hair on these meds with no problem. I can only speak for myself...hope this helps in some small way
0 -
Fingerscrossed, I am just starting my 3rd cycle of these drugs and have had absolutely no hair loss or thinning whatsoever. Hope this helps in some small way
0 -
No hair loss here, early in the game. Just half of one cycle.
*susan*
0 -
I was worried about hair loss, too, but I have completed three cycles of Ibrance plus letrozole and my hair is thick (even though it started out having to recover from chemo).
0 -
I am on my third cycle and haven't had any thinning or hair loss I am taking biotin which I started after radiation on my jaw it seems to have really helped with hair growth where it came out plus overall it is growing faster than normal
0 -
You can add me to the chorus, fingerscrossed, I'm just starting my 3rd cycle tonight (my white bloodcells are finally recovered enough for that) and no hair thinning or loss here.
0 -
Roses,
Congratulations [or whatever we say when our body does what we want] on the increased blood numbers!
*susan*
0 -
I haven't yet heard anyone complain about hair loss (knock on wood). Tell your mom not to worry about that.
Ok, I have a question. I think this has been chatted about earlier in this thread, but hard to find so...
When do you take your Ibrance combo? I take mine with dinner because it's my most consistent meal. However, I have really bad insomnia. My hubby suggested I take it in the morning. I'm not sure of the relationship between the insomnia and the time I take the med. Does anyone have any input onthat? Thanks!
Stefanie
0 -
Stefanie,
I am doing it with dinner. This is the only meal that feels consistent to me. I am generally at home. It is my largest meal of the day. It tends to be the meal that I have at a consistent time. So far, knocking on that same piece of wood, I have not had any insomnia on this drug. When I first started aromasin back in 2005, I spent a lot of energy figuring out what time of day to take the drug. But back then, I thought that there would be an end date at 5 years, and had plenty of time to investigate. For me, the evening was the best time to avoid the insomnia.
I am way too early in this process to be a resource I fear.
*susan*
0
