Best Of

Hello girls, how are you? Did you have a good August? Did you go on vacation anywhere? I went traveling around Scandinavia and am back to normal life.

@shorty123 I’m sorry you’re going through this again and I wish you the best of luck. Any further developments?

I’ve been feeling better, although still with the awful menopause symptoms. I had a terrible scare a few weeks ago when a large lump appeared on my arm in the operated side, near the armpit. I was seen by a doctor who wanted to do a biopsy if it didn’t improve within a week. Fortunately, it disappeared, and the conclusion was that it was from me overusing my arm (I exercise at home with weights and sometimes overdid it, until this happened).

I had more bad news. I went to a trichologist because my hair was never growing at a speed comparable to other people I know and was very thin at the top. It seems I am one of the rare cases with permanent chemotherapy-induced alopecia. The doctor said the only thing that can help me, without any miracle guarantee but just some improvement, is minoxidil—both the spray twice a day and in pills (apparently the spray alone does little). The problem is that it’s a lifelong treatment, because the hair falls out again as soon as minoxidil is stopped. The medication also causes hirsutism, and the doctor immediately said I’ll need laser hair removal on my whole body to try to control the excess hair. Additionally, since it’s a vasodilator, it can cause fluid retention and even heart problems when taken orally. I still don’t know what to do. This is devastating—I’m still young, and I loved my long, strong hair :( On one hand, I really want to have hair again because I can’t stand the wig anymore, but on the other, I’m very afraid of the side effects of minoxidil.

I haven’t decided what to do yet, and I need to make a quick decision because I’m going back to work and need to decide whether to keep wearing a wig (which is already in very bad condition and very uncomfortable), take minoxidil with its horrible side effects, or go bald on the top of my head. Maybe I'll use a scarf. I don't know what to do…

And how are you? any news?

@shorty123 sorry that u have to go through this again! I was stage 1a (high grade DCIS w single focus 1.3 mm invasive). I underwent BMX but no chemo or radiation - that was the recommendation that I got. I'm 2 years out. I've noticed some intermittent pins/needles sensation at my mastectomy site (side tumor was on).. still trying to figure out if it's just due to exercise or something else. My MO appointment is in November. I'll probably just keep an eye on it till then.

@shorty123 welcome and sorry to have to meet under these circumstances. This is a great group for support. I am 6 months out from my total treatment which included chemotherapy, lumpectomy, radiation and immunotherapy. Not super fun but totally doable. I had lots of side effects but most are gone (my feet still hurt). Please ask any questions, come here often, you will get help. A big hug to you. Donna.

shorty - sorry for your new diagnosis. The same thing happened to me. Double mastectomy with no further treatment necessary. Then two years later - IDC in the residual lymph nodes on one side. Since I was diagnosed ER/PR neg and HER2 positive, my doc was very proactive. TCHP chemo, then surgery, then AC chemo since there were still some nodes that lit up, then radiation, then herceptin. It is certainly doable. I drove myself to each of the 6 hour infusion treatment and all the radiation treatments. If you're still working, I would recommend infusions on Thursday or Friday. I was always tired, but back to work by Mondays. The last treatments were now 11 years ago and I have been fine since. Bi-annual breast ultrasounds show no problems. Good luck.