Immunotherapy

[Topaz_77]

I’ve been on Ibrance since October 2018. I have possibly had some progression so my oncologist is considering trying me on Immunotherapy, which has recently been approved, depending on the results of my CT, which I will be doing on Tuesday. Has anyone done Immunotherapy, specifically for breast cancer, or know anyone who has? What were your and/or there experiences?

Overall, I feel pretty positive as I wanted to try Immunotherapy when I was first diagnosed but my oncologist said I wasn’t there yet. She hasn’t decided if she’s going to try Immunotherapy or if I’m even eligible for it but I still want to hear other’s experiences with it.

[SoCalLady]

Let us know when you have your appt next Tuesday with your onc. I too am interested in immunotherapy, and what he would have you on.

[Topaz_77 in reply to SoCalLady]

I will do that.

[Livinthedream]

Can i ask what type of mbc you have?

[Topaz_77 in reply to Livinthedream]

I have ER+, HER2-

[Livinthedream in reply to Topaz_77]

Will you please post what immunotherapy treatment your dr is putting you on? Im kind of in the same boat

[Topaz_77 in reply to Livinthedream]

She won’t say yet. She just said she’s considering it if I’ve had progression, which, on the surface, she said it looks like I have. I am going for a CT scan on Tuesday and then we’ll be discussing my results and future plans the following Thursday. I’ll definitely post an update.

[Livinthedream in reply to Topaz_77]

Good luck with your ct! Ibrance failed for me after 7 cycles, i am only on faslodex currently but if it doesn’t work my onco mentioned chemo. I too am ER+ Her2- so I am interested if you have immunotherapy and what kind.

[Topaz_77 in reply to Livinthedream]

Thank you very much! So you’re still fighting cancer with just the Faslodex? I’ve been on Ibrance for 11 months so I guess it might be time for a change. My oncologist plans to keep me on the Faslodex and Lupron. I thought I read on here that someone was NED after about 16 months on Ibrance. Different results for everybody I suppose.

[Livinthedream in reply to Topaz_77]

Well my onco started me on faslodex in August after ibrance failed and I struggled badly with fatigue while on it. So she said that faslodex ‘could’ work for 6-12 months but she also said that if it doesn’t work, my next step maybe chemo 😭 soIm trying to figure out another path if at all possible.

[Topaz_77 in reply to Livinthedream]

Oh okay. Yeah, I’ve been on all of that, Ibrance, Faslodex, and Lupron, together since November 2018. It’s only the Ibrance she’s considering changing. I pray you don’t have to move on to chemo but we do what we need to do to keep fighting this battle, yes? I know I will. 🙂

[Topaz_77 in reply to Livinthedream]

Could be another oral chemo, too. 🙂

[Livinthedream in reply to Topaz_77]

I will take that any day. Better than a port in our chests though!

[Bubbles001]

I have been on immunotherapy for 6 months in a clinical trial along with a PARP inhibitor. The combo is working for me and my tumors are stable and shrinking slightly. I’ve had few side effects. Most people do well on it, but some do not, especially those with autoimmune disorders. I’m hoping to stay on it a long time. My tumors are both ER+ and TN and the Onc says it works on both. Best of luck to you!

[Topaz_77 in reply to Bubbles001]

Yeah, I was thinking because of what Immunotherapy is designed to do those with autoimmune disorders wouldn’t do well. Fortunately, I don’t have an autoimmune disorder. Thank you for sharing your experience! May I ask what side effects you have experienced and, from you may have heard in the clinical trial, do you think it’s possible I may have to put traveling on hold? I’m already planning to buy travel insurance for the trips I’ve booked. Just curious. Also, do you exercise? I wonder if this treatment affects exercise. Sorry for all of the questions but thank you in advance. 🙂

[Bubbles001 in reply to Topaz_77]

Side effects for me are a little fatigue and some hair thinning, although that has mostly stopped. I do some light exercises and would like to do more. I am not restricted from physical activity. I took 5 trips this summer, so travel is not an issue, I just work around the infusion schedule, which is every three weeks. It’s been a lot easier for me than I branch as my white blood cell count has stayed normal.

[oilermama]

Topaz_77 --

Best of luck with the immunotherapy. I am still on Ibrance - on month 14. So far so good. Will look forward to hearing how things go for you.

[Topaz_77 in reply to oilermama]

Thank you! Yeah, I’ll know after my CT scan if I’ll be able to stay on Ibrance or have to come off. I’m glad you’re doing well on it though! My oncologist said she has another patient who’s been on Ibrance for 5 years.

[oilermama in reply to Topaz_77]

my oncologist says she has one patient approaching 3 years... but she reminded me last week that 24 months is AVERAGE and she had two patients that were only on it 6 months. Welcome to the real life lottery!

[Topaz_77 in reply to oilermama]

Woot! 🤪 I guess every med affects everyone differently. I heard of on lady on an Immunotherapy clinical trial whose breast cancer was completely wiped out while others died. That particular clinical trial didn’t get approved per my oncologist. I guess we just have to keep fighting while we can because you just never know if you’ll come across that treatment that turns out to be just what you needed. That’s why I’m willing to try as long as my body is willing.

[Sister3nkc]

Following! Alao on Ibrance. Onc has mentioned immunotherapy would be next line of defense.

[Topaz_77 in reply to Sister3nkc]

You, too, huh? Please keep me updated. I guess I might change treatment before you though. We’ll see after next week!

[mariootsi]

Haven't tried it yet but seems to be the future of cancer treatment.

I would think there may be guidelines to be eligible for it.

[Topaz_77 in reply to mariootsi]

Absolutely. I have my CT scan on Tuesday so I guess we’ll see what happens after that. I was already ineligible for one particular treatment because I didn’t have the mutation needed. I hope I’m eligible for this one though!

[mariootsi in reply to Topaz_77]

Good luck!

[Topaz_77 in reply to mariootsi]

Thank you! 😁

[Pbsoup]

Interesting. My oncologist, who is a researcher and professor, said to me that “immunotherapy is not yet an option for breast cancer”. Are you all in the UK?

[Topaz_77 in reply to Pbsoup]

I’m in the US. Two treatments were recently approved though what I read said triple negative breast cancer and I don’t have that. Apparently ER positive people are getting it, too, though. One of the ladies in my offline breast cancer support group was doing an Immunotherapy clinical trial. Here’s an article about it though: google.com/amp/s/health.usn...

[lynnhbtb]

Yes, I'm on immunotherapy and was on taxol and now taxotere now for Stage IV MBC triple negative. It has shrank the tumors and I am tolerating it well. Well, I have side effects, but they have been tolerable. My dr. got me approved through the Keytruda pharma co. Merck although it wasn't indicated for breast cancer and this was in Jan. before the FDA approved Tecentriq. One of the indicators is a higher PD-L1 expression, which I don't necessarily have, but hey, it's seemingly working. Hope this info helps.

[Topaz_77 in reply to lynnhbtb]

That is a great help. Thank you! 😁

[mariootsi]

All I have heard is that if you are eligible it is an effective treatment. I wish you well! Keep us updated please.

[Topaz_77 in reply to mariootsi]

That’s great to read. I pray that I am eligible and I will definitely post an update.