Genomics

[muzzatron]

HI all,

After a progression 2 years on Arimadex, Ibrance my dear partner has had a liver biopsy and we are doing genomics testing, around $3.3k. 500 gene plate? Awaiting results but after a second opinion , (lady Onc, more caring, smart) Fulvescant has been prescribed. The other prescribed Tamoxifen. Arimadex caused a lot of joint pain, cramps horrible I am told.

In Australia if progression CDK4/6 inhibitors are no longer funded so trial after ‘holiday’ is not funded . Has anyone had success after a break or another CDK4/6 inhibitor ?

No data but it has been reported but a switch, break can be effective.

Has anyone done genomics testing?

The US surgeons are now supporting but not yet in the standard of care.

Only because targeted therapy is in its infancy, trials required to identify best treatments.

biospace.com/article/releas...

🙏🏻

[TammyCross]

I had the opposite experience. Fulvestrant and Ibrance first, really effective for two years, and subsequently Arimidex and Verzenio. Arimidex was difficult for me -- a lot of pain. I thought it was joint but have been told it was muscle. My oncologist in the US is conservative -- follows standard of care -- but she and my second opinion at MSK said it works to switch CDK4/6 inhibitors; they don't know why, but it does. I got very little out of Verzenio, caused major fatigue, and it is ridiculously expensive. I have been trying to get my oncologist to go back to Ibrance after a vacation. She doesn't consider it a vacation to go from one CDK4/6 to another, but only if going back to one used before. She refuses to do that.

I found Fulvestrant miraculous. I had one large tumor and many mets when first diagnosed. All gone within a month of starting fulvestrant. The Ibrance might have helped some, but it was really the fulvestrant that was driving the elimination of tumors. For me, the side effects were minor. So I say go for that first. If she needs a bump from a CDK4/6....I don't know. They are all ridiculously expensive. I received both Ibrance and Verzenio through the pharmaceutical gratis.

In between those two, I was in a clinical trial for an oral SERD. It also wiped out all evidence of cancer, but failed after one year. It was a great year. That trial was discontinued because the pharm. had another cancer treatment for a different kind of cancer that it decided to focus on. They never published the results. I don't know of trials for other oral SERDs. (The one approved for the US works best if one has mutations. I don't -- or I have one for which there is no treatment.)

The genomic test will tell you more about which direction to go. It may suggest a different treatment altogether. Good for you for doing that. (I had that covered by insurance, too, but it didn't help me.)

[muzzatron in reply to TammyCross]

My heart goes out to all and thank you for sharing. My takeaway on my journey of discovery is a positive mental attitude, diet and exercise gives the best chance of success. That’s all you can ask of yourself.

Also tumour markers not that reliable as they did not detect the progression, from a very low base trended up marginally.

The Arimadex, Ibrance combination is believed to have the better side effects profile but in our case Arimadex was bad. The standard of care here is both as works in synergy but once progression authorities no longer fund CDK 4/6. Our new Oncologist may have a work around and a few scripts left. The conservative Oncologists adhere to the standard of care as this protects them however they are influenced by big pharma, study trips etc. We prefer the integrative approach. Anecdotally a switch, CDK 4/6 holiday may work. The dilemma is it can delay a more effective treatment. I think I heard there can be variations, mutations within the same cancer so to some extent can be trial and error. Hence we are awaiting the latest biopsy and going down the genomics path. Starting Fulvestrant soon 🙏

[TammyCross in reply to muzzatron]

Good to hear that. Fulvestrant is a good one, and it is the heavy lifter, more important than the targeted (the CDK4/6). Like your partner, I had a rough time on Armidex --but I didn't on fulvestrant. Also fulvestrant was much more effective for me.

[Figletf]

My Oncologist did the testing and then I was approved for Enhertu infusions.I have been on several other treatments in the past six years.

[Merma]

I’m in limbo right now too. I was on Ibrance and anastrozole for nearly 6 years for recurrent endometrial cancer. The cancer came back in the vaginal cuff (the scar tissue where the uterus was, and possibly in a lung nodule (awaiting biopsy after brachytherapy).

Got to wait for all the biopsies to see if the cancer mutationschanged. But since August, I’ve had two three breaks and my blood no longer fully recovers. I think I need a real break. There is just not enough supportive research any which way and even less for endometrial cancer. There actual is almost no funding in this area for endometrial cancer.

[Hazelgreen]

My cancer markers came back down to close to normal range (0 to 30 in Canada) when I took double tamoxifen for a year (2020/2021). However, my oncologist refused to prescribe double (he said it was not in his practice guidelines, so I regretted telling him as he had not noticed I took double), and the cancer markers quickly rose when I only took single tamoxifen. A CT scan confirmed progression so I was then started on ribociclib which I'm still on, over four years later.

Taxes pay for all my meds so the cost is not my issue. However, I was informed the government's cost for tamoxifen is $35 per month, compared to $6250 monthly for ribociclib. As far as I can tell, I tolerated tamoxifen better than ribociclib so it seems my oncologist was really foolish in not leaving me on double tamoxifen for as long as it might work.

[HopeinNJ]

After six years on Letrozole and Ibrance my cancer mutated. Fortunately a new medication was just fast tracked and approved for this specific mutation. The mutation occurs because of cancer developing a resistance to the estrogen blocking drugs commonly used.

I just started Orserdu the first oral medication developed in 20 years. It blocks the estrogen pathway. Right now it's only approved as a mono therapy but clinical trials are underway with it being used in conjunction with other meds.

I'm on my second month (one pill, once daily) and am tolerating it very well. It's very expensive but there are a lot of plans and financial support to help with affording it.

Best wishes and I hope this may be an option for your partner.

[13plus]

Hi, fellow Aussie! I HATED Arimidex, was on it for a year, years before I got my mets dx. I told the doctor I couldnt take it any longer and switched drugs. After mets dx I had ibrance and Fulvestrant for 2 1/2 years before progression. I couldn't say which really worked for me but there are many people here who are given fulvestrant alone initially (I think depending on treatments prior to mets dx), so I would say that's a great option to try (and side effects-wise I found it a breeze, just read up in this group on hints about dealing with itchiness (Claritin helps!) and dealing with the hard lumps at injection site.

Genomics testing can be very helpful for treatment choices if never been done before. That said, after ibrance I had lynparza, said to be a great option for my specific make-up, but it only worked a year AND spread to my liver.

After that I went on a trial for 6 months combining those 3 drugs together, but it didn't really help at all, I just slowly progressed over that time. And so I'm off the CDK 4/6 options and now I am on Afinitor and tamoxifen for about 3 months, scans coming up in a few weeks! but I feel good, and besides my still high TM my bloodwork is very good