Mbc and 2nd line treatment

[somogil]

I have changed to my 2nd line of treatment which is Fulvestrant 2 x250mg.

No other drugs even though my scan showed new spots. Is this normal?

[jersey-jazz]

Isn't it nice just to have the one drug with the side effects of only one drug and the variables of only one drug? I am only taking one drug at a time. This is my second line of treatment and it is the same as yours; Fulvestrant I have a feeling that this one will work. Let us both hope so! I wish you good luck with it.

[Corrina97 in reply to jersey-jazz]

I'm on fulverstrant but also take Ribociclib and denosumab. All cancers are different so I guess our oncologists will put us on what's best for us. Good luck hoping it works well for you. I'm on my 22nd cycle🥰and stable x

[jersey-jazz in reply to Corrina97]

Well done, you! How many years have you survived MBC?

[somogil in reply to jersey-jazz]

33 cycles of palbo and letrozole.

[Corrina97 in reply to jersey-jazz]

I'm on my 22nd cycle of treatments. Have been on these since being diagnosed with MBC 🥰x

[somogil in reply to Corrina97]

Thank you. All the best to you x

[somogil in reply to jersey-jazz]

Yes, it is nice to look forward to just one drug!

[Corrina97 in reply to jersey-jazz]

I'm surprised that there's a few on here in fulverstrant only .I wasn't given that option. Onc told me I needed both Ribociclib and fulverstrant. Ribo to kill cancer cells and fulverstrant to block the estrogen. And also denosumab for my bones. It's great to hear some if you are doing so well on just one treatment as saves you from side effects and can keep other drugs for a future time if needed. Hope Fulverstrant .Good luck🥰 xxx

[jersey-jazz]

I I began Letrozole 12/27/2019and took it daily until a microwave ablation on 2/27/21. The oncologist prescribed for Ibrance as well to be given at the same time. I spoke to the Ibrance person and upon hearing how much the insurance company was going to have to pay the Ibrance company, (more than $15,000 - Total over $17,000 ), I cancelled it before the delivery and told the oncologist that I wanted one drug at a time. The Letrozole was completely useless for my cancer. and has given me an internal trembling thing that will not go away and wakes me up most nights. So far, the Fulvestrant is okay and I am hopeful that it will do it's job. How are you feeling?

[somogil in reply to jersey-jazz]

Hi, I get my first 2 jabs tomorrow morning.The ibrance and letrozole worked for 33 cycles so can't complain.

I live in Spain and get my healthcare via the national health. I couldn't have afforded to pay for ibrance!

I had to pay for the fulvestrant... 4,84 euro a tenth of the actual cost.

I think it's very unfair that you have to pay so much for your healthcare. I take it you're from the states? I'm english, but resident in Spain.

[jersey-jazz in reply to somogil]

I am American but was married to a Scotsman and so lived and worked in Scotland for twenty-seven years, the best time of my life because he was the exact person that was meant for me. He cited for me for twenty years.Therein lies a tale.. Where in England are you from?

[Southside25 in reply to jersey-jazz]

Can you qualify for grants or Pfizer patient assistance? I was on Ibrance for almost 4 years and fortunately had assistance to cover everything my insurance did not cover. Do you have a specialty pharmacy or social services at your hospital? They should be able to check for you. I never did a thing; my specialty pharm found all assistance.

[jersey-jazz in reply to Southside25]

The reasons I did not agree to take Ibrance were twofold. The first was that the company Ibrance was charging the insurance companies an exorbitant sum of money for every single dose. My social conscience disallows me to take part in this scandalous practice. The second is to protect me and my otherwise healthy body from unnecessary drugs being put into me. I wanted take Letrozole on its' own to find out if it was effective for the particular cancer in my body. It wasn't.The insurance companies along with the drug companies have a stranglehold on the health system, in the USA. It is quite remarkable to me that former President Obama ever got "ObamaCare" through the system with those too powerful lobbies pushing against it. In some ways, the health system in the USA is worse than some third world countries, countries with so much less money at their disposal.

[LadyKatarina in reply to jersey-jazz]

I am so proud of you for refusing Ibrance due to the exorbitant amount that Pfizer is charging for it! All of the MBC patients have been led to believe that it will save their lives--and the hype is so exaggerated. I took it for a short while--but got off it as soon as I could. I thought fulvestrant was the easiest to tolerate--so best to you!

[jersey-jazz in reply to LadyKatarina]

Thank you for understanding where I am coming from. In an ideal world, the metastatic patients would have their own big lobbyists pushing back to bring down the cost of drugs to a reasonable price. I am curious to know the cost of some of these drugs like Ibrance in other countries.

[LadyKatarina in reply to jersey-jazz]

On one of the FaceBook groups a woman in the Netherlands said her Ibrance was about $2500 per month--or per 3 week cycle. I calculated from euros at the time she told us that. Not sure if it has stayed the same price. Yes, all of us need lobbyists. Here in MN some of the MBC women from my local Metavivor group were at the state government testifying trying to get a cap on some drugs. They were working with a group of diabetics. That was all pre-pandemic so I don't know what is going on now. We have a crazy system here in the US--for sure!

[Mcangel11 in reply to Southside25]

Same here !! My specialty pharmacy got it for free.I being a nurse know all the companies have forms to fill out to see if you can get help. I just got one drug linzess that with insurance it cost 200 a month. I went on their website and got a card for a year 30 Co pay per month..I feel terrible that people don't have this knowledge because no one tells you. I can help people with where and how to find these resources if needed.GOD BLESS

[jersey-jazz]

Typo correction: He waited for me, not cited. Sorry for my bad typewriting.

[somogil in reply to jersey-jazz]

I'm from Birmingham. Met my husband in 1976 and been together ever since. He is the right one for me!😍

[Debbigbang]

I wasn't sure about that either. But apparently fulvestrant can work well on it's own. I have an appt with onocologyst on Monday for my 2nd line. First was letrozole and ibrance. I believe I will be on that one as well. I have another small leision on my liver. I know my t3 bone is no longer stable, my back is sore. BUT, this is a slow process. Some of us have to go through a few treatments to get the right fit for stabilization.

I wish you great success with fulvestrant 😁.

Deb 🙏❤

[jersey-jazz in reply to Debbigbang]

Thank you for your good wishes and I sincerely wish the same back to you.

[PJBinMI]

I got over 9 years from second line Fulvestrant! Bone mets, so bone drug only other cancer med.

[mariootsi]

Hoping this works well for you. Nice to just have fulvestrant.

[cpidacks]

I have been on Fulvestrant only as my first line of treatment for three years. My oncologist wanted me to be on Ibrance and Fulvestrant, but I have difficulty swallowing pills so decided to try Fulvestrant only. So far so good. My scans have been stable. I have a tumor in my liver. I feel good and don't mind having the shots monthly. Good luck to you and to all of us on our journey.

[fancydog]

I have been on Fulvestrant alone for over 5 yrs. I did have one lymph node become cancerous last year and it was treated successfully with radiation. I am thrilled and my Onc that we can save such treatments such as Ibrance for perhaps a later time.