Clinical trials

[Dianne417]

Hi, all! I was wondering if any of you have participated in, or explored participating in, a clinical trial, and how you made the decision to move forward with the trial or not.

[Hidden]

I am being screened for a trial but I will only be accepted if my Ibrance stops working. I figure if the trial is open when or if this happens then it would be worth a shot.

[Dianne417 in reply to Hidden]

Thank you for getting back to me, Sarcie! I have the option of doing a standard treatment next, (Faslodex), and will need to evaluate how entering a trial would be better for me than pursuing a standard line of treatment.

I wish you luck!

[Hidden in reply to Dianne417]

It’s a tough decision. I know that the one I was given the info for said I could pull out at anytime so that is a good option.

[Dianne417 in reply to Hidden]

Thank you, Sarcie! I just want to make sure I'm doing the right thing for myself. There are a lot of factors to consider, including that the hospital where I would be receiving my treatment for a trial is 40 miles away in Boston, which is a major schlep with our Boston metro traffic.

I'm thinking that I may wait on a trial until my only next standard treatment option is infusion chemo, which is something that I never want to have to do. At that point, I think my risk tolerance for a trial would go way up.

[Jerseygirl45 in reply to Dianne417]

I was so afraid of going for the IV Chemo also. But when all regular treatments still had my petscan she showing progression since last January. And tumor marker kept going up. I was put on Afinitor and believe me those side effects were really bad.

I am now going for my7 th chemo out of 12.

I was expecting to be nauseous sick not eat lose hair. I was petrified to start. But felt it was time to just do it since it may give me a few years remission.

It is not bad. I have chemo on thursdays, I feel great Thur fri sat. Sunday I am tired some leg or body pain. I sleep a lot. Start feeling better on tues. My hair is on my head but very thin. Will start using wig outside this week. But not losing weight vomiting nauseous.

I now plan my week around this.so house and laundry are done on good days bad days I sit and relax.

So glad I went for it as I woke up last night surprised I was not in any kind of pain. I could roll over move legs nopain at all.

Praying it is a sign that something is working for me. Will see.

Good luck to you hope meds work for a long time and you do not need to make the call on IV Chemo but if you dodo the be afraid go for it if it will help you.

Barbara

[Dianne417 in reply to Jerseygirl45]

Thank you, Barbara! I appreciate you sharing your story with me and am so glad that you're doing better.

[Jerseygirl45 in reply to Dianne417]

You are welcome. Just wanted you to know the thing we deed the most is not so bad since they seem to treat the side effects with the treatment.

Good luck hope you improve without it.

Barbara

[Dianne417 in reply to Jerseygirl45]

Thank you, Barbara! You may be right. I know they have good drugs now to treat the side effects, but I still want to keep infusion chemo as my very last option, if possible.

[PLASEM in reply to Jerseygirl45]

That is really good that the side effects are not too bad what is the name of your Chemo take care

[Jerseygirl45 in reply to PLASEM]

I am on Taxol, they also give you Benadryl, Pepcid and a steroid so it stops side effects before you start. A lot better than I thought it would be.

[PLASEM in reply to Jerseygirl45]

Good less side effects

[Dianne417]

Thank you, Sandra! I appreciate you taking the time to reply. I was hoping to take a page out of your book, but according to my medical oncologist, my first line of drugs has officially failed. She told me that I could stop taking them because they aren't doing anything for me anymore. She also said that you need to be off your former drugs for a month before you can start a trial.

If I had been experiencing slow progression, continuing with Ibrance and Letrozole might have been an option, but my tumor marker number has ramped up to its highest point in two years, and my scans are showing moderate progression, both with new lesions and increased metabolic activity and size of former lesions, so it is time for me to do something different.

[Snowcone16]

I’m in one now. MATCH. I considered one at NCI. The one that cured Judy Perkins but they declined me for a preexisting autoimmune disease of bile ducts 😕. I learned though when you enroll in a trial that you transfer all of your care to the clinical trial. I’m okay with that for the right trial.

After molecular testing, the results said I was eligible for 81 trials 😲. Two were at my cancer center. I was open to either but my oncologist encouraged me to join the one she leads. I reviewed the info and it seemed like a good recommendation.

🤗

[Snowcone16]

Timing for a trial was right for me as 3 hormone therapies in a row failed to work. I was open to chemo. Oncologist said to go with trial and we always had chemo to fall back on...

[Dianne417]

Interesting! Thank you so much Snowcone16! I appreciate the feedback. I'm curious to see what I'll learn next Tuesday. Yes, my oncologist told me that for the time I'm in a trial, she would need to step back from being my doctor. I'll have to explore more what that means next week, i.e., does this pertain just to my cancer care, would it affect the care I get from my PCP, etc.

[Nursewithcancer in reply to Dianne417]

Hi Dianne

I was just diagnosed in December with er or positive her 2 negative with diffuse bone Mets and started ibrance and letrazole. I had second opinion in Boston at Dana Farber and everyone agreed that at progression Faslodex would be a good option with ibrance. I am a nurse and have done a lot if work in research. I trust research but I think I would go to next line of standard therapy. Hoerever if it was a stage 3 trial I might consider it. Do you know what the trial is. What drugs are they using?

If you do go on trial it does not effect your primary care but only your cancer care and you could go back to your local oncologist if you cone off the trial also must oncologists will continue to see you if you you need supportive care I wish you the best.

[Dianne417]

Hi, Sandra! It looks like my reply yesterday didn't go through. Sorry about that! My medical oncologist has suggested Faslodex next. I know that some of the trials combine the standard treatment with a drug that they're testing.

[Dianne417]

Thank you for all of this, Nursewithcancer, and I am so sorry about your diagnosis. I wish you didn't have to be a part of our group, but I appreciate you taking the time to respond. At the moment, I'm inclined to go with the Faslodex, because it will probably be the simplest option for me, but I'd like to learn a bit more about the world of clinical trials. The study my local med onc identified was a Stage 2 trial, which I know is less optimal from the participant perspective than a Stage 3 trial. The drugs involved are Faslodex, Ibrance, and Avelumab. I have read that many trials include the standard treatment, but with an experimental drug thrown in, but we'll see. The D-F med onc said there are several trials I could consider.

My local med onc has already applied for approval on Faslodex for me, so if I decide not to do a trial, she can get me started on this drug on Feb. 28.

Thank you, again!

Dianne

[SoCalLady in reply to Dianne417]

Dianne, have you started on the Faslodex and did you find out what your costs would be? Are you on Medicare or private insurance? If you're on Faslodex, are you also on anything else?

[Dianne417 in reply to SoCalLady]

Hi, SoCalLady! I'm currently being screened for a trial at Dana-Farber. I have been out of the country, so I'll resume screening this week. I'll let you all know what the outcome is. Thank you for asking!

Dianne

[Cshipley123]

I did a clinical trial. My advice is to read the fine print. I was told the trial would cover all tests and treatments but not doctors appointments. Well that wasn’t true as everything has been run through my insurance and I’m left with a huge bill for the 20% not covered. Lesson learned.

[Dianne417]

Thank you for the heads up, Cshipley123! I know that I would have to run everything by my insurance company to see what they would cover, which is another reason to stick with the standard second line of treatment for now.

I'm sorry about what happened to you, and I appreciate you sharing your story with me.

All best,

Dianne