Ibrance (Palbociclib)
Comments
-
PS: Some credit card companies have started including trip insurance if you pay with their credit card. I seem to recall that Hotels.com has a credit card that also includes trip insurance. I used it with the Costco card (they no longer include that) and it really worked. I will never schedule a trip without either free cancellation or trip insurance.
0 -
Great news Jen! Re travel insurance I use Insurancewith.com. Set up by a broker who had BC and was shocked by the cost of our travel insurance as cancer patients. Might be worth Mods asking for a compilation of companies who will cover us now?
0 -
Pocket duty for Jackie's MRI today. Thinking of you.
Congrats Jen!
Curious, those flowers really are beautiful. I have a thing for succulents. I even have a necklace with faux ones.
April, France sounds amazing!
Will report for Candys scans coming up soon.
Really not doing well with the scanxiety for my upcoming scans, this time around is especially bad/hard. I'm hoping I keep the barium down for the CT and my back behaves for the bone scan. Also hoping that my legs will want to move toward the scans each time, you just feel frozen, like you need an flat escalator to get you there and a wench to put you on the table.
0 -
LOVE the necklace, Rabbit!!! and best of luck with scans, when I had to fight to get one at one point, then the scan seemed more like something that was for me than against me, if that makes sense...
0 -
I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong. Stopped Ibrance/Arimidex Feb 2021 since there is progression. A week ago I started Afinitor/Exemestance. See oncologist today, will see what tumor markers are doing.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.
0 -
Blue Girl Red state,
I'm sorry that you're going through this. It sounds like craziness. When would any of us be able to get into clinical trials, or want to, unless a treatment fails?
I'm sure that some ladies more knowledgeable about all of the protocols will chime in. I'm sorry I'm just here for you and with you and wanted to respond. You're not alone.
Tanya
0 -
Blue girl/red state - it is still shocking to me (in the stage IV club for 18 months) that WE have to do so much research and advocating for ourselves....I try to lurk on the thread that is about Clinical Trials and I am astounded at how our stage IV sisters have become so knowledgeable and are have learned how to navigate and research all of this. I am sure you will get help from others on here but know that I completely understand your anger, disappointment and discouragement that you are at this point. Hoping that A/E is working and continues to work to kick back the cancer.
RRabbit - i also love succulents! That is a pretty necklace. I hear you with the scan anxiety and for me it seems to get worse every quarter (the anxiety). We are with you.
Karen, Wandering and Jen - I will look in to travel insurance. As for our France, 2023 trip - we had to jump on the ticket purchase as they sell out so fast but have some time to arrange for lodging and flights. One of our Rugby friends who lives in our community in WA state has an uncle with a winery in the South of France and he will host us for a week.
Holly - hoping you are feeling better after your treatment on Friday (lung drained of fluid - can't remember what that procedure is called).
XOXO to all!
0 -
Thank you Miss Rabbit. It was a PET that I had today. Now comes the waiting part...again.
0 -
Jen - Terrific News!
I am still here. It's been sort of a whirlwind the past week. I had my thoracentesis on 3/10. Drained 1100mL. Then this past weekend, I was feeling "off" and the shortness of breath came back, so I emailed the doctor. I was sent in for a CT on Wednesday 3/17. That afternoon, the results came back, another large pleural effusion (in just a week's time). Compared to my CT on 2/2, the pleural lining has extensive thickening and nodules. I had atelectasis in the lower left lung. A few lymph nodes are measuring bigger in my mediastinum area and upper abdomen. Doctor is switching me to carboplatin/gemzar/keytruda regimen for three cycles. He wanted to start today, but the insurance company would not approve the "urgent" request. Since the insurance company is not playing nice, they wanted to get me into chemo on Monday, but we've been planning a beach getaway for spring break and I didn't want to be sick as a dog while there. So after a flurry of messaging back and forth last night, we came to an agreement where I would start taking Lynparza again for the week and get my normal "3 week infusion" of Keytruda. That was the original plan before this past Wednesday - to stay on Lynparza and add Keytruda. So needless to say, my morale was severely beaten down on Wednesday. I am doing much better today. Just trying to keep it all in perspective. Oh, and yesterday I got another 1400mL drained from my pleural effusion.
Hello to everyone else.
0 -
Hello everyone!! It has been few months since my last login to this site. I hope everyone is doing alright.. Just wanted to share my scan results after 2 years on Ibrance. It shows up on patient portal, so will go over with MO next week. It mentioned something about lower anterior abdominal wall which made me worry. Does anyone have anything similar to this on scan report? Can it be the Eligard injection site on my belly?? Thanks in advance for your input
0 -
Hi 42young, I am not an onc. or radiation oncologist BUT i do think that is the injection site on your belly. My last 2 petscans showed inflammation or ,"very mild fdg uptake in subcutaneous tissues of bilateral gluteal regions corresponding to fat stranding likely due to inflammation at injection sites". My oncologist agreed this is from the fulvestrant injections when she saw it on my report. Let us know what your MO has to say but your scan results look good!
Candy - in your pocket for your upcoming scans!
Jack5ie - in your pocket over this weekend while you wait for results.
Hollyli1212- that does sound like a whirlwind. Happy you are having a weekend away before you start the next lymparza. Let us know how it goes next week!
I just got back from visiting/helping my parents as my father fell and broke his hip a few weeks ago. He had surgery, went to a rehab facility and is home but it is really hard to be 85 and trying to regain walking (safely). Both my parents have had both covid vaccines but the hospital and rehab protocol was that no one could visit my Dad, who is pretty much deaf so it was a really trying few weeks. We are happy he is home. I was working on getting them more help at home, with my sister and overall it was a good visit. Times likes these I wish I lived closer to them! They are in Palm Desert and I am up in Seattle.
0 -
42young,
I'm with aprilgirl. When I have had faslodex shots close to the time that I've had a scan, the injection site is mentioned on the scan report. One time, I went to my faslodex shot and told the nurses that I was scanning next. They let out a big sigh and told me in advance not to worry if I saw something related to air or an area of concentration because it was the faslodex shot. They don't mention "abdomen" on mine, though, but as you've probably gleaned, radiologists each have their own unique wording for what they are seeing, and it can be very confusing.
0 -
Thank you Aprilgirl & BevJen. I will report back after meeting with MO next week. I hope everyone enjoy the rest of the weekend. Weather is finally getting better here in New England, so hopefully we all can get vaccinated & get out to enjoy the Spring with less fears of covid. Hugs!!
0 -
Aprilgirl1: I visited my mother when she had surgery a few years ago. She told me how much she appreciated me coming to help her. I told her I thought that was why she had so many kids "to get help when she got older and needed it". She winked at me and said "no it was because she loved my daddy". TMI Glad your parents are still around - mine are not.
0 -
Candy wishing you best of luck for tomorrow long trip, scan, MRI good results and MO visit.
0 -
Thanks Snow-drop and others--Rabbit and aprilgirl-- for the well wishes and pocket duty. CT chest and MRI abdomen at 10am. Then blood draw--- for calcium check. Then MO at 1pm and Xgeva after that. Long day. But will have scan results by end of day. 2 hour drive there and 2 hours back. I will post either tomorrow evening or Tuesday. Hoping I will be saying I will be on cycle 39 of Ibrance--- first line treatment-- still.
0 -
Aprilgirl glad you could be there for your parents!
Just getting ready to start cycle 52 of Ibrance/Faslodex!
I am cross posting here from the bone mets site. Hoping for some insight on radiation for new bone mets.
Have not posted in a while as my mets were pretty quiet up till last year. Question about radiating new sites. I have had 4 great years on ibrance/faslodex though last year had 2 spots of progression in the hips. We radiated the spots and they continue to get smaller. Just had a second PET confirming a small (SVU 7) new spot on my iliac crest. My primary Onc suggests to radiate it...second opinion says she would let it go as the cancer seems to be moving slowly and she wants to save the bone marrow for potential chemo treatments down the road. She also said with my history, people can live a long time and wants to be able to treat me for another 5-7 years....was that a estimate on how long these treatments will likely work for me? Feeling very confused and a bit anxious with the life expectancy prediction. Thanks for any thoughts on whether I should radiate now as it is "small" or wait and let it grow and start planning my next cocktail of treatment? 😶
0 -
Hi Perky congrats on such a long run on ibrance. The prediction is an educated guess but I think that since ibrance/ immunotherapy is relatively new (since 2014) I think, no one really knows. Sending you support and gentle hugs. Oh also about the radiation they do try to save it. My understanding was that you can use it a few times (2) but that depends on the time in between, area, etc. some of the heavy hitters with way more knowledge and experience will chume in soon
tanya
0 -
Holli - do they know why fluid is getting in the chest wall? I just had 1 1/2 liters removed on Friday after a CT revealed why I was experiencing shortness of breath. Probably related to the cancer, but unknown. So..... hoping it does not come back. Clots suspected, so put on blood thinner. Lots of tests on the fluid, but I don't think anything "significant" was found. Due for ultrasound to check on clots, CT image not very clear because fall the fluid. Swelling in R arm went way down. It might have been the tight compression wrap worn for several days and/or blood thinner (if clots). Taken off of Ibrance/Arimidex a little more than a month ago since there was progression. Now on Exemestane/Afinitor.
0 -
perky I received the same comment from my neuro oncologist, she said you need your bone marrow for later when I asked her opinion about radiation to T and L Mets, I already done 10 sessions of palliative rads on my fractured vertebrae plus 2 healthy bones above and below.
Candy please update us when you can.
0 -
Thanks guys for all your concern and well wishes.
Well, I think I have had progression. I posted a long post on the Liver Met Thead. https://community.breastcancer.org/forum/8/topics/809420 No new liver lesions, but the 4 have all grown some. My MO says "small, but steady increases". We are going to do Guardant 360 testing and she is going to talk to the liver tumor board.
I asked about changing from Ibrance/Letrozole to Verzenio/ Faslodex. She said if she puts down "progression" then insurance will not do Verzenio. ???? I guess progression on a CDK???
So, right now, still on same treatment and get Guardant results and meet back in 1 month to discuss.
0 -
Candy,
I responded on the liver mets thread to most of your questions there.
One I didn't answer -- is this progression? Based on what you posted on liver mets, I would probably say that docs might consider that progression. Of course, you could ask your MO if she can have the radiologist re-read the three scans together and re-measure the lesions. That's the first thing I would probably do just to ease your own mind.
Also -- another thought -- what about Ibrance with faslodex? I'd ask her about that one too, and see what she says. Taking two drugs, I don't know if they ever figure out which one isn't working.
Thinking of you.
0 -
Candy, did you mention to your MO that you’ve been off ibrance for Covid vaccine recently?
0 -
Candy,
Sorry to hear about this possible progression.
BevJen and I are thinking alike. Why not try Ibrance with Faslodex for a few months? I'd also consider upping the Ibrance to 100mg. I have never gotten to .5 ANC as you did but I've had many readings between .6 and .9. I am usually in Grade 3 neutropenia but neither my MO nor I are concerned because I rarely am sick and am not getting infections such as UTI's. My MO is of the thought that Grade 3 neutropenia on Ibrance is not the same as Grade 3 on chemo based on what she has seen these past 5 years that Ibrance has been out.
Between you, your MO and the tumor board, I am confident you'll come up with a good plan.
0 -
BevJen- I will ask about Ibrance/Faslodex combo. Seems with "progression" on paperwork that the insurance balks about changes in meds. If we say "progression" and need to switch up hormone meds, then insurance would balk about staying on Ibrance with "progression". Seems my MO thinks the insurance company makes the determination on what we use.
Snow-drop--- I forgot to remind MO about being off Ibrance for vaccines. But I messaged MO nurse this morning. She messaged back that that could have been a factor, but I needed the vaccine so we had to do what we had to do.
Chicagoan- MO was going to up the dose to 100mg then saw the current labs and said NO.
0 -
Candy, It looks like you have been on Ibrance-Femara for four years? That's a great response and it seems like rather minor growth of the mets? so its quite endocrine-sensitive and moving to Faslodex makes sense. I don't understand what you say about insurance not approving Verzenio for progression? do you mean you would have to stay on Ibrance? Regardless, if that is an issue somehow, your MO could say the change to Verzenio is due to problems with low neutrophils on Ibrance... Or is the problem that if she marks it as progression then they won't allow you to combine the Faslodex with any CDK4,6 inhibitor? But quite a few people do try exactly this, so its maybe a more common practice now and insurance might not balk at doing that anymore. Anyway, one can justify a change to Verzenio at any point (now or later) just by saying its due to side effects with Ibrance.And for the question of whether this actually progression, one standard is if its more than 20% growth in existing mets
0 -
Here is a new clinical trial where Pfizer is testing a new CDK4 inhibitor together with Faslodex, following progression on prior CDK4,6-AI therapy:
https://clinicaltrials.gov/ct2/show/NCT04557449#el...
0 -
Candy,
I don't think faslodex falls into the "insurance won't cover bc of meds" category. I've not seen anyone say that when they switched from an oral AI to faslodex that it caused any payment problem. I have seen people say that their docs have told them that you can't switch from one CDK4/6 drug to another without issues. But, as Cure-ious stated, that may be outdated. If I'm not mistaken, there are new studies out that say that Verzenio, which is a newer, stronger CDK 4/6 drug, can be effective after use of Ibrance. In fact, I mentioned it to my doc as a possible treatment at some point, and she said yes, that could be possible. (Caveat: I don't think my MO has any idea at all about charges for drugs, etc.)
Moral of the story: I think that faslodex should be covered in substitution for letrozole. But your doc's office can confirm.
0 -
Cure-ious--- yes Ibrance-Femara since 2017. I need to clarify what my MO meant. She did say if we put "progression" on the wording of the paperwork, then insurance may balk. She said something about changing from AI to Faslodex and insurance may have qualms about it. IDK. I need to clarify. But seemed to mean that insurance makes the decisions.
0 -
That trial is not in my area. But she did mention a trial being done at my center that may work for me. She did not elaborate.
0
