FAILING TREATMENTS WHAT IS NEXT!!!!!!!!

Imagine

Hello Stage IV’s

I am having a real hard time getting any mileage out of treatments, so far Ibrance/Falsodex and Xeloda, I am only 11 months in this new world of MBC. I am getting a port tomorrow to start IV chemo and a biopsy of some new subcutaneous nodules, Praying for Her 2+. I know that is a long shot but it seems to have so many treatments. I was 12 years out of early stage and highly ER + Her2- but my ONC says my response to Endocrine therapies are not going to work and my cancer is acting like triple negative at this point, my Mets are in the pleural area of right lung.

I guess what I need is to hear from some of you if you have gone through treatments fast and still had some longevity when you found the right treatment to slow progression. I have no illusions of getting NED or becoming an outlier at this point. I would just like to know if I should cash in my 401K and go get that BMW I have always wanted. I would take some trips but because of Covid that is a no go and being on IV chemo for 3 weeks with 1 week off that will be a challenge.

I really would love to hear if some of you got response after failing on your first treatments. I have a small Pleural effusion also and if you look that up on Dr. Google it gives you really sad statistics.

Thank you in advance for any input, I may have that BMW by the end of the week.

nopink2019

1st sign of my problem was pleural effusion, leading to repeat thorascentises, every 10 days for 5 times. My 1st 2 attempts at MBC tx failed. (Doesn't matter which ones, we're all different.) 3 months of failure and recovery time took a toll mentally. Switched MO when 1st one didn't have another concoction to try. Been on current tx for 1 yr. Took 3 months to get in groove with this tx and think there was some hope. Lexapro has helped with that. Lungs almost clear. Then COVID has really complicated how to make the most of what we with MBC get out of life. Keep trying. Hope some good news is coming your way. I look forward to your results and plans forward as I know mine won't be good news forever.

Sadiesservant

Hi Karen,

I know how concerning it is when you struggle to find the right treatment but I am unclear how your MO can be sure that you will not respond to hormone therapy. What about an AI (Femara, Arimidex or Aromasin) or Tamoxifen? There are several treatments available and failure on one does not guarantee failure on another. It's good that you have having a biopsy as that may provide some clarity in terms of the hormone status.

I totally get where you are coming from. There is a lot of similarities in our experience. I too was many years out when I was diagnosed with a right pleural effusion almost four years ago and I also blew through several treatments in the first year. I started on Taxol as my MO wanted to see if he could get the pleural mets under control quickly (I had about 3.5 litres of fluid in that lung!). No dice. We then switched to Arimidex, adding in Ibrance. My body wouldn't tolerate the Ibrance (severe anemia) and then the Arimidex quickly failed. We switched to Xeloda and while there was no clear evidence of progression, we didn't feel it was doing the job. Then in January 2018 we switched to Faslodex and for me it has been a god send. I'm coming up to three years on it. We did layer in Verzenio a year ago but that was more of a strategic decision on my part as I suspected that I would have trouble accessing the drug if and when Faslodex fails. So far every scan has come back stable. More recently I did have some issues with what is likely some small progression in my bones but we have decided to stay the course in terms of treatment. Scans again in three months.

As I mentioned in an early post (I think on the lung thread), you shouldn't give credence to the scary stuff that Dr. Google says about pleural mets. It's very dated and there are several women on this site who have been doing well for many years after being diagnosed with pleural effusion. Bestbird is a shining example. The fact that your bones and liver are clear is a good sign. You also need to keep in mind that we are all very individual in our responses to treatment. A treatment that is great for one might have no impact on someone else's cancer although they look to be quite similar. It's really hard to know which treatment will give us the longevity we all hope for.

I hope your next treatment is golden!

Imagine

thanks so much for all the encouragement. I’m at the hospital now getting the port put in and biopsy of the new lesions. As you know when a treatment works you feel hopeful but when it doesn’t it just feels kinda “why bother “? Hopefully I will get some response from the Gemzar /Carboplatin.

moth

hi Karen, I hope all your procedures today go well and your new carbo/gemzar do the trick. I think most recently NicoleRod was chewing up treatments so quickly ... but she's now on something that's working well! Don't give up hope, just kick the can down the road a bit. You never know when a new drug or treatment will be approved.

Let.us know how it goes today!

Hugs

buttonsmachine

Imagine, I could have written those same words about feeling hopeful and then feeling why bother. I had really significant progression on Faslodex/Ibrance in only a three month period - those drugs just didn't work for me AT ALL. But then there are the people out there who get years out of those drugs. I guess the only way to know is to try. I'm on Xeloda now, but who knows if that will work for me either. I hope you have a good response to Gemzar/Carbo, and that you have minimal side effects.

elenas401

Imagine: I had lung plueral mers when I was diagnosed almost four years ago. I was frightened by what I read online about that, thought I had only a few months left. Taxol, then Ibrance cleared them up. I'm now trying Xeloda and probably radiation to the breast tumor, but my lungs look good now. We never know what will be successful till we try, but those pleura issues can respond. Hope your treatment works well for you.

S3K5

Karen, others have already responded to you about not giving up hope.

I'd like to add my experience - I have been stage IV since 2013, with bone mets and then in early 2019 the liver mets showed up. Since then I have been on a few chemo regimens and endocrine therapy but the liver mets continued to grow and became diffuse. My oncologist referred me to the IR who did a microwave ablation on one of the growing liver lesion. The biopsy report says that it is triple negative, which is a mutation from earlier ER/PR+ve. My oncologist is planning to start me on Tecentriq + Abraxane, which is a typical treatment for triple negative.

Have you had a biopsy after you were diagnosed with mets? If not, is this something your oncologist would recommend? Maybe your tumor cells have mutated and they are not ER/PR+ve anymore? It may be worth exploring. Mutation from hormone positive to negative is more common than once believed.

Imagine

they just biopsied the subcutaneous lesions and added a port for next weeks IV chemo of Gemzar/Carboplatin last ct scan showing progression. I will know something next week, also sending to foundation one for genomic testing to see if there are any changes in mutations.

nopink2019

Imagine, After receiving fluvestrant, I walk around the parking lot rubbing injection sites to distribute the "syrup" away from the muscle. Last week as I walked I passed a BMW Z4 Roadster. What a hot car! Maybe you should rush out and get one. Good luck with new meds.

dorimak

Hi, I know we are all different but I'm coming up on five years since DX with ER+/PR+/HER2-. Not sure if you have done other lines of treatment other than you mentioned but there are sev real oral lines for ER+/PR+/HER2- before moving to IV Chemo. In my case I started wtith I think Femara and it was still growing and IBRANCE was added. After that failed I did like three other lines. I was on Xeloda for two years and just recently had progression. You may consider getting a second opinion. I have moved MOs multiple times more because of moving of job and home and I found different approaches. It just doesn't sound like your MO has exhausted the standard lines and maybe the pleural effusion is a different factor. Either way I am away sin favor of a second opinion. In the case of the brain mets the RO where I was going said I had to do WBR. i went for a second opinion and did s tereotactic radiation. Huge qauality of life difference. Blessings to you on your journey.

movingsoccermom

It is nice to see these posts, since I just found out that Ibrance/Fulvestrant is failing (mm progression in several areas).

As a long time BMW driver I would encourage that experience! I am currently driving a 325d, which most people would say is not an advert since she starts out slow, but normal driving gives tremendous mileage. My hubby has a Z4 from 2012 and it is simply a dream.

Thank you for posting this topic, since I literally hopped on tonight looking for this very information.

Cheers

Movingsoccermom

7of9

imagine...I bought a boat ( used) after 1st diagnosis, the a brand new F150 sonic blue crew cab after recurrence. That was 5 yrs ago. Also pulled enough from retirement to remodel kitchen. Granite baby. Go for the granite.. and get that damn car!!! Post road trip pics please. We are headed to Vegas and Zion with our 11 yr old come hell or high water in April.