Calling all TNs

not defined, if melatonin works for you, take that. I am a great sleeper but I am taking it for the anti cancer properties. If you google Metformin TNBC the studies will come up. My naturopath has me on 20 mg per night which is a very high dose you would need to work up to. Because of the gallbladder issue, you may want to check all the tips you get here to make sure they are suitable.

oops I said metformin above - I am taking both of these drugs for anti cancer effects

I just started Monday! Are you being treated at ProCure, by any chance?

So far, so good-- I love the facility and staff. It's very smooth... People are very on top of it. As one example, when I arrived on Monday, the man at the reception desk greeted me by name. (OK, he had my photo ID for me, so he could see I was me, but still!)

I am not sure if I mentioned it in this thread but my daughter lives in NYC, and a bunch of old friends too (I lived here in the 80's and I went to college on the east coast). So I thought the month would pass more quickly if I had people to hang out with a bit. The two proton centers in CA are located in 'friend deserts'... I came last weekend w my kittens and am staying at a hotel nearby and feel great about the decision.

My RO said that if I experience SEs it generally would be after 2-3 weeks. I have 5.5 weeks, I am being really careful about skin care and crossing my fingers....

Hi Notdefined, I missed your post the other night. I have boy/boy twins. They can certainly be a handful but I love having them be best friends! That's awesome that your son is doing so well, now. I have 2 nephews on the spectrum. One nephew is doing great but the other has not progressed and probably won't improve without a breakthrough. My SIL has spent many, many nights up worrying about him. I've spent a good number of nights worrying about our future, so I can imagine the parallel you must feel. When I was going through treatment, one of my sons found having other moms pick them up and changes to our schedule very stressful. He likes a routine so I hired a college student to pick them up and handle after school for me and it was worth every penny. I drove myself to Taxol/Carboplatin. For my 4 AC I did have somebody drive b/c I did got a lot of antihistamines and I was drowsy. I also was in a clinical trial and drove myself then. My DH would come to the 1^st of each treatment and then we saw how I did. Twice I got calls during infusions from school- about a sick child and a head bump so I told my MO, I wanted as few premeds as possible. On really bad nights, I used half a Xanax to fall asleep. On many other nights I did Tylenol PM which was recommended by my MO. It has an antihistamine that makes you drowsy and is not habit forming. You might like a chemo group but I'm also happy to offer suggestions! I didn't end up joining a group myself- I started with a clinical trial that nobody else was doing and I felt like I didn't fit in. Hope you're doing ok today.

Flynn-I am doing AC right now, and I was quite drowsy last night at my first one.  I was completely out of it, but today I feel close to normal. Having kids during this journey is hard.  I definitely don't want my kids to feel like their life is going to change, but I know that some things will need to be modified.  

Thanks for the warning, Flynn; I was not aware that skin worsens after completion -- it will help me, to plan for that... my boob is pinking up already in one week, so fingers crossed.

Yes, only 22 Proton centers in the country right now. Many at teaching hospitals. Mine is freestanding. All they do is proton rads. (Reminds me of that SNL skit: cheeseburger cheeseburger pepsi pepsi.) I love this center. It's very efficient. I consistently am in and out in 30 mins. The systems they have are very smooth, very easy, and very patient-friendly. Nearly a spa experience. t's probably dumb to conflate the two but when everything is organized, clean, and on time, you feel like "they must know what they are doing!"

On intake, they made a mold out of a hardening foam which I lie in every time, to get me in the same position. Then they scanned me in that position so the computer could determine the best angles, etc to cover whole breast plus lymph nodes. In the 2 weeks between my intake and beginning rads, they made three amoeba-shaped cutouts (also via computer) - that go over the thing that delivers the beam, and direct it to where it is supposed to go and block it from washing over nearby tissue.

There are four brief zaps, each w a different set up. The zaps take a few seconds and the new setup takes a few minutes.

Many people here to get protons for unresectable tumors. I asked my techs, and they said they do have quite a few BC patients like me, getting standard post operative rads too.

I was surprised that insurance covered me for protons but being left sided and TNBC is enough to qualify I guess. And the center capped my co-pay to my out-of-pocket max under my plan, which I would surely have met this year anyhow. I encourage interested people to explore this option. I know UMD also does protons and they have a subsidized hotel/residence which patients can stay in. Probably other centers do too. Mine does not but there are plenty of cheap extended stay hotels close by.

Amen, sister.

My CA antigen tests were never elevated, so it isn’t a definitive means of testing.

Wow, i just got my blood testing info and they want me to do CEA and CA.. i dont understand why look for markers after chemo/surgery/ rads?? Is this normal?

urdrago71, my oncologist performs the CA test at each visit, but made it clear that the test is NOT definitive. A single elevated result may well be a fluke, but she noted that two in a row after a history of low numbers might warrant further testing.

On a related note, if my exam and lab results look good next month, I get "promoted" from oncology visits every four months to every six months.

Lyn

LoveMyVizsla, Valstim52, AnotherNYCGirl....

Hey Guys....good to see you on the site and good NOT to see you often on here. I’m a little past three years since surgery ( that’s how my MO counts). I have no lingering side effects from chemo or radiation. We’re all traveling along the same time period, and it’s SO GREAT that we’re still doing well. Wishing you (and all our BC sisters) exactly what I wish for myself....many more healthy years living a full life. Keep in touch through PM, if you would like. Would love to hear from you. ❤️❤️

Great news on escaping long-term side effects from treatment, Cathytoo!

Lyn

Hi,

I hope all here are having a good day (week, month, year, etc!)

Val, - I wish you relief from your arthritis!

Cathy, - thank you for thinking of me. I am so happy to read that you are happy and traveling and enjoying life!

To those in treatment, - I wish you an easy and speedy time of it!

I'm catching up on posts and although I try to remember who I want to say what to, my chemo brain (or maybe just being in my 60's?) doesnt help me keep track! ugh (In my 60's is still hard for me to believe! yikes!)

BE WELL my friends!

thank you for posting!

HI, I'm new to the forum and have been diagnosed with TNBC. I'very done 4 rounds of epirubicin/cyclophosphamid and 5 rounds out of 12 of paclitaxel. I've noticed that the tumor seems to grow, soften, and then get smaller. Has anyone else experienced this?

Hi Kat1479!

Sorry you have to come here, but this is definitely a place to ask questions and get good information.

My diagnosis and treatment so far have been almost identical to yours, and I'm only three years older than you are. I was initially diagnosed with IDC in mid-November after mammogram, ultrasound and biopsy, had a lumpectomy 12/10 which removed a 8mm triple negative tumor, clean margins, 0/7 lymph node involvement. Without too much in the way of research on the subject, I have merely followed my medical oncologist's (MO) recommendation of four rounds of TC (taxotere and cytoxan), three weeks apart, followed by radiation. I have my third chemo treatment tomorrow. So far I have had very minimal side effects. They've loaded me up with anti-nausea meds and other "support" drugs, both infused and in pill form. I'd be happy to go into more detail if you'd like.

As for the radiation, I have not met yet with the oncologist recommended by my MO, so in the meantime I have been researching proton therapy for breast cancer. Here in Atlanta we have a brand new proton therapy center, and it's very easy to get an appointment for a consultation. That appointment is March 7. I'll let you know what I find out if you're interested.

In the meantime, from what I read in a recent study, whatever you decide, you should make it your mission to start your chemo treatments no more than 30 days after surgery for the best chances to avoid relapse. Take a look at it here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60060...

Good luck!

Anne