Oct 8, 2020 08:05PM Wanderingneedle wrote:

I’m due to start my third cycle on Tuesday. I haven’t had the problem with steroids keeping me awake for some reason. I take a 2-3 hour in the afternoon after treatment and still sleep all night. I do take morphine at night so maybe that helps. I take a low dose of prednisone daily for an autoimmune issue I got from tecentriq but don’t need them for two days after treatment. This last cycle was better than the first as far as the diarrhea/constipation issues but the fatigue is still hard. Does anyone notice that they “settle in” to side effects and they become easier and more predictable?

Sharon, great news on the MRI! For whatever reason, brain mets sounds really scary to me even though I know there are good treatments for them. 🤷🏻♀️ I don’t know when my next scan is since I haven’t been on this treatment or with my doctor for long.

Shay, I was wondering about how many treatments there will be after this stops working. After mutating to TNBC I had two lines of treatment that failed and made me feel like nothing would work. My oncologist did not recommend this treatment and I went for a second opinion and she recommended it and she is now my doctor. She specializes in TNBC so I’m glad I found her. She has a great team which makes it even better.

Everyone have a great weekend!

Oct 9, 2020 09:58AM anornurse wrote:

Wanderingneedle, Steroids make me sleep well too! The side effects are manageable. I think you will start to see a pattern and then prepare for it. I think it does become easier, just because you know what to expect. I have been taking a daily probiotic sine I started the trodelvy. When I was on tecentriq from 4/19 to 11/19, I was hospitalized twice during the summer with side effects from what they thought was tecentriq related, but no one was really sure. The cons outweighed the pros, so they switched me to ixempra and xeloda til trodelvy was approved in April. I have been on it for about 5 months. The week off is the best I feel. I find that if I stay as active as possible even if I don't feel that well, I start to feel better. Patch Adams said, "help other people and you forget about your problems." He is right. I am a nurse by profession and it's my nature to help others, which helps me to forget about myself. This whole tnbc business is very scary! It' so wonderful that they have come out with a drug that works! The Ascent clinical trials are very impressive! You can see them online. I'm glad you went for a second opinion and that you really like this doctor and her team! I hope this drug never stops working especially for Shay and her liver! We all have to believe and never stop hoping! Sharon

Oct 9, 2020 10:40AM Momerath wrote:

it's so great to read about all your experiences, especially Shay's!

I have had 3 treatments with pretty minimal side effects, except that my hair is falling out. Maybe it is because of my age (75), or maybe I am just in the unlucky 38%. Otherwise some diarrhea and fatigue, but very manageable.

I was really happy to receive this treatment because I thought I did not qualify. This is my first treatment for breast cancer metatasticized to thoracic spine and lungs. My doctor said my lungs sound much better which is worth whatever I have to put up with. She will have a preliminary cat scan at the end of the month just before my 3rd cycle, so we can get some idea of what is happening.

Please keep posting your findings so we can get a clearer picture of the efficacy and toxicity of this new drug! Let's hope it really is a lifesaver! TNBC is a rather depressing diagnosis. As an aside, Trodelvy has already been lucky for me. After I read about it, I bought the stock which increased nicely and then doubled when Gilead bought it for a nice windfall!

Oct 10, 2020 02:43AM norcals wrote:

I asked MO about trodelvy and in her limited experience, she felt that it had more side effects than keytruda or tecentriq. I had heard from my oncology nurses that keytruda and tecentriq can cause very serious side effects, so I would like to know from those that have had trodelvy and keytruda or tecentriq whether the side effects are less or worse

Oct 10, 2020 08:29AM bevjen wrote:

WanderingNeedle,

Since you just posted about this, what was it that prompted your docs to put you on tecentriq? I see that you are hormone positive and HER2 negative. Did you have a specific mutation or mutations that caused your MO to think of this?

I ask because I am looking at immunotherapy clinical trials. Tecentriq showed up on my Foundation One report as a possible treatment for me.

Thanks much.