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Cosmo254
2 Posts
Hi, just want to introduce myself to the communities. I had triple negative breast cancer of the left breast in 1998. I had lumpectomy, chemo and radiation. Now 23 years later I have triple negative breast cancer on the right side. I’m undergoing chemo first this time. I’ve had 2 of 4 treatments with 21 days between treatments. I’m thinking I need to stop chemo and have the lumpectomy and radiation as the chemo is killing my immune system. My white blood cells dropped to a critical 1.1 and my doctor wanted me in the hospital until the shots they gave me brought the cells up. I refused because I think I would be more apt to pick up bugs in the hospital then in my home. Any suggestions would be appreciated.
8 Replies
DMT
67 Posts
Cosmo254‍ Welcome to this great forum. Sorry that you find yourself here though. Hopefully someone will chime in with some guidance on your specific question. I’ve had several types of cancer over the last 43 years, the most recent being breast cancer, but not triple negative so I don’t have the knowledge to help on this. Hope you feel better soon so you can resume your treatments.
Runner Girl
1688 Posts
Hello Cosmo254

I'm sorry that you have had a recurrence and that you are having a hard time with chemo. It would seem that this discussion is best had with your oncologist. Typically they do chemo first to shrink the tumor to a size that they can then remove surgically.

The shot they gave you must be similar to the one I had every time I had chemo. Mine was called Neulasta. It was to force my bone marrow to make white cells. It caused my bones to hurt, but it did a great job of boosting my white cell counts.

I'm going to tag a couple of the TNBC ladies for their comments Essjayashcon

When do you see your oncologist next?

Runner Girl
Cosmo254
2 Posts
Runner Girl, I get 2 shots after chemo. The first one the next day and the 2nd one 24 hours after that. FYI: If you take Claritin every day it stops the bone pain from the shots, or at least it stopped mine.
ashcon
1886 Posts
Hi Cosmo254
Wow, glad you have come here though I wish it was not for another bout of TNBC especially after so many years. And I wish you had not lost so many family members to this stupid disease.
I was diagnosed with stage 3 TNBC 4 years ago this month. I had Surgery #1, chemo, surgery #2, then 25 rounds of radiation. I'm hanging onto NED status right now and am stretching and straining to hit that 5 year mark where likelihood of mets or recurrence is greatly reduced. So your story is an inspiration to me.
How crappy that it came back for you again 23 years later, though.

Sitting here on the sidelines and not knowing the full details of your situation and other comorbidity factors, I think a key factor in your situation may be this: how much has the cancer spread this time? Regionally or locally advanced? The only reason I ask is because if there is some spread, surgery may not be the solution to remove it all. And because TNBC tends to be aggressive, any microscopic cancer cells may spread quickly while you recover from surgery.

It sounds like those white blood cell boosting shots are not as effective for you as they could be. Is it possible to switch to another more effective shot or shots? To help keep you out of the hospital?

Covid aside, what have you noticed is different this time around in your treatment (drugs, protocols, support systems + resources) compared to 23 years ago?
Essjay
1484 Posts
Hi Cosmo254‍ Im sorry you are going through this again….

It’s a tough decision just now - are you better in hospital or at home, and I can’t advise.

I’m glad you checked in here - it’s an awesome community.

I hope the cell counts rise very quickly and you can get back to chemo. I never had any issues with this when I was on chemo, but I have friends who did and they did end up getting admitted for treatment and delays in chemo, but they got back on track and completed treatment.

How are you feeling today?

best wishes Essjay
JustJan
617 Posts
Cosmo254‍ welcome to our group. I am sorry you have been diagnosed with cancer yet again after all that time.

Like Essjay‍ I can’t comment on whether you should be in hospital or not.

In January 2019, I was diagnosed with TNBC and also ovarian cancer 4 months later. Although I declined chemo for the breast cancer, I did have it for the ovarian cancer.

I did not have the shots as I was very lucky that my counts always rebounded well. I did google what to eat to help bring your white counts up. There is quite an array of food that can help. The week my counts dropped, I ate a lot of spinach salad and added many of the items into it. I really enjoyed eating them too. I found them extremely tasty and refreshing. This might be something you could try in conjunction with your shots.

I hope you can get sorted out soon and start to feel better.
freebird
7 Posts
Hi. It feels to me like you have been very brave.... This journey with breast cancer is a very personal one. We get a lot of input from doctor's, nurses and Dr. Google. My sister was recently diagnosed with triple negative breast cancer after she found a lump while checking her breasts. I helped her do some research (am in Toronto, she is in northern Australia). What I found out is that the reason for chemo is to reduce the tumor size. The doctor's want to "preserve the breast", in the assumption that every woman feels the same way about her breasts. I was arguing with an oncologist and ask, If a woman does not identify with her breasts and has no interest in "breast preservation", why won't you start with a mastectomy since triple negative is an aggressive for of breast cancer? The doctor did not get it. He kept saying, "this is the science", this is what they do.... My sister opted, (against medical advice) to start with a bilateral mastectomy (lump was only in one breast) and is now just completing her last round of chemotherapy (12 weeks single dose + 8 weeks double dose of chemo). The physician, oncologist actually told her she made the right decision (but only after the fact) since there were slight changes in the lymph nodes in the other arm (but no spread). She was able to join a worldwide trial of an imunotherapy treatment which lasts 1 year. The reason she did the mastectomy was that she said she does not identify her femininity with her breasts (she was small breasted) and she said her breasts served her well when she was breast feeding her two children. She is now in her mid 50's. I'm not sure what I would do, because i have large breasts and they form a big part of my identity as a woman. However, seeing how brave my sister was, and her attitude of just doing what had to be done... has given me a lot of courage. In the end, my only suggestion is to do thorough research but then follow your gut. As a woman, we might "feel something" that differs with what the medical model says, and we have a right to question. Often digging a bit deeper and asking why x,y,z is not being offered, will get interesting answers. In my own case (I have hormone positive, HERS-ve) II asked why I could not get targeted therapy (which they mainly do for HERS +ve). The doctor referred me to two trials and said they had opposing results, so they are awaiting the result of a third trial, which will then tip the evidence in one direction or other. Had I not asked about this, I would not have known that the final decision was still hanging! As well, I am currently signed up for a radiation trial, where they are testing whether women with a low reoccurrence risk, need radiation of the lymph nodes or not. So one group of women are getting breast only radiated, and the other are getting breast and lymph nodes radiated. It really made me realize that we do have a choice to question our treatment options. Hope this helped. Claudia
Dauntless
71 Posts
Hi ladies, I get first shot next day after chemo and 9 more for a total of ten. It does keep my neutrophils up so I can get chemo. Soon be starting maintenance chemo so don't think that drops wbc count. I take claritin and ave not found pain too bad. I am terminal, so have a Palliative Care Dr who helps me with the pain. Tis a rough ride for sure.
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