Fulvestrant and Kisquali

[Jg1960]

Hi All,

I've recently found out I have a regional recurrence of my BC and my oncologist is recommending switching me to Fulvestrant and Kisquali . I was diagnosed 4 years ago with Stage 3 ,due to the size of the tumor and lymph node involvement, HR+ Her2-. I had a bilateral mastectomy with an axillary lymph node dissection. I did chemo after surgery and have been on exemestane since. I did not have radiation.

A recent pet scan showed an enlarged axillary lymph node that a biopsy showed as cancer. (apparently the surgeon missed one!) This is considered a regional metastasis and does not put me into Stage 4, yet.

I'm told a regional recurrence is not common and I'm still not sure if it is a good or a bad thing. Obviously any recurrence is bad.

I'm wondering what others experience has been on Fulvestrant and Kisquali, I do not like the idea of having to go to the hospital to get a monthly injection and have heard about issues with sciatica, lumps at the injection site. I have gastro issues so my oncologist is going with Kisquali instead of Verzenio because of the severe diarrhea. I'm not thrilled with the side effects of either proposed drug.

I'm interested in hearing what others think of this course of treatment as I am weighing quality of life vs quantity of life. Thanks in advance.

[Katatonia]

I am so sorry you are going through this. I, like you, had a regional recurrence which my doctor said is "good news" since it is localized - not that any recurrence is good but one that is local is better than the alternative. I know it does not feel like good news. I am on Verzenio with Anastrzole and I can confirm that the diarrhea on Verzenio can be brutal. I wish I could say something to make this better because it stinks. I also had to do 16 rounds of chemo and radiation, so the treatment consumed most of the last year. It's so hard. You are in my thoughts!!!

[Jg1960 in reply to Katatonia]

Hi Katatonia,

Thank you for your response and your kind thoughts.

Did you do chemo and radiation for the recurrence? My oncologist didn't think chemo was a good option for this. She has consulted with a surgeon and radiation oncologist and both think treatment with meds should be first to try to shrink the lymph nodes - there are 2, an axillary lymph node and a sub-pectoral lymph node - and then they would try either surgery and radiation. She feels radiation is the most important tool this time around as she feels it offers the best chance for a cure. I refused radiation the first time after surgery because they were doing is only as a precaution and I felt the risks outweighed the benefits. They fought me on it but I stuck to my guns. Maybe that is why I have a recurrence, I took a gamble and apparently lost, and if that is the case I can accept it. I always said I would consider radiation in the event of a recurrence. But maybe it is more because the surgery did not get all of my axillary lymph nodes, which was supposedly the case. Anyway...it is something I will never fully know.

I think having to go to the hospital monthly is very restricting and would prefer the ability to take a pill. I understand the FDA just approved an oral SERD, but my oncologist said it is for distant recurrence - Stage 4 metastasis to other areas with a specific mutation. When I read about it it said advanced or metastatic breast cancer ESR1-mutated. Worth investigating I think!

I am reaching out here hoping to hear from others who are on Fulvestrant and Kisquali and what their experience has been. I'm more interested in quality of life over quantity of life. Not that I have a death wish or anything, but I do want to be able to live a reasonably normal life.

Thanks again, I hope you are staying healthy!

[Katatonia in reply to Jg1960]

I did chemo both times but also think the fact that I did not do radiation the first time may be why mine came back. The oncologist I had at the time did not push radiation because I have the ATM genetic mutation and some studies indicated that it could result in some negative side effects. Four years later, they insisted on radiation but the chemo was also required due to the oncotyping. Sadly, my cancer is the type that requires chemo. Because it was a recurrence, they were as aggressive as possible with the chemo, so I had weekly infusions and it was not fun. I can't speak from my own experience, but one of my cancer buddies (support group locally) has the monthly infusions and she does not seem negatively impacted. She is back to work and seems okay with it. I know each person's experience is different, but at least for her it's not bad at all. Good luck and stay healthy!!

[Jg1960 in reply to Katatonia]

Thanks for the info! Take care.

[Multigravida1956]

Hi, I’m on Abemaciclib ( which is Verzenio) . I’m on my 3rd cycle and the side effects are not too bad. I found the first cycle the worst but loperamide has been very effective in controlling the symptoms. The Monarch E trial suggests that this drug reduces the risk of recurrence in early breast cancer in high risk women by 7% in the treated group at 5 years, I believe it has better results than other CD K inhibitors in this setting.

I try to understand as much as I can about my cancer and treatment but I realise this isn’t for everyone. I am sorry that you are having to make these decisions and wishing you well.

[Jg1960 in reply to Multigravida1956]

Hi Multiravida1956,

Thanks for the reply. I also try to understand as much as possible, I want to know everything I possibly can so I am able to make an informed decision. Are you also on Fulvestrant?

I just found out that my insurance does not cover the drugs being recommended for me at this time and if I have to pay out of pocket it will be in excess of $8000.00 a month. I will be going on Medicare in about 6 months so I will need to see if these drugs will be covered then. Fingers crossed! It appears my options are to decide to try to find alternative treatment or bleed money until I am destitute! It's always something, right?

Thanks again and take care!

[Cu4281 in reply to Jg1960]

So sorry 🤝

[macor]

I had recurrent breast cancer in 2021 and at that time had a mastectomy. Originally in 2017 I had a lumpectomy as well as chemo for 8X and 33 radiation treatments. This last time I couldn't get radiation again as it was the same area, but they started me on fulvestrant and Ibrance, I go monthly for the fulvestrant shots and the only side effect I have noticed is a strong odor to my urine for a day or so. The Ibrance is a pill I take for 21 days on each month and that does give me a few side effects....such as diarrhea and hair loss....but it seems to be working as tests have come back good. It is super expensive but you should check out the drug company as depending on your income they can help with the payments. Good luck to you!

[Jg1960 in reply to macor]

Hi Macor,

Thanks for your reply. I'm glad to hear that the treatment is working for you. I have gastro issues which is why the recommendation is for Kisquali, but I'm not all that impressed with the side effects it has either. I am in the process of switching insurance companies and have found out the none of the ones I am considering cover either drug! I'm told by the insurance companies that the doctors and hospitals have a way of getting the drug approved, but the doctor and hospital acted like they didn't know what I was talking about when I inquired! I was told that the drug company could help but it was based on income, I'm no social security but do have retirement accounts and no one could answer if those would be taken into consideration. I found out that if I had to direct pay for the fulvestrant shot it would be almost $8000.00 per month! So even if the doctor can get a waiver for it I'm probably looking at about $1,000 per month. I have asked about the Kisquali but could not get a straight answer from anyone. How are you to make an informed decision when you can not get any information??? This is so frustrating.

[macor]

I did not receive any good info from the insurance company at the time either,,,but was advised by my friends who are nurses, to have the social worker at the hospital where I go for the fulvestrant injections look into any help I could receive...as that is part of their jobs. I explained that I was totally stressed out from it and if I had to pay myself I could never afford it. She did look into it ( for the Ibrance) and I did get the help. I had to provide the 1st pages of my previous years tax return.....the doctor had to fill out some paperwork and I had to fill out a little bit of paperwork. I am on social security also, and do have a small retirement account but they didn't ask for the latter info. My insurance pays for the majority of the fulvestrant as I understand it as it is considered a chemo med and is done at the hospital. Hope this info helps and you get some help.