Best Of

All -

This is RK2020. I’m posting on behalf of my wife. She has been placed in hospice and is receiving excellent end of life care. She said don’t fear hospice. She thanks everyone for the support over the years. Love Regina

Dear bossmom24, I am sorry you have to be here… but then again I am so blessed I found this community 7 years ago, a bunch of very (VERY!) knowledgeable and kind people who in many cases became my "second opinion", ,,second MO", and even friends…

I am not a cancer patient myself but I try as much as I can to help my beautiful wife who was diagnosed de novo in 2017 being 33 years old, with our 2 year old baby on our hands. 7 cm tumor out of the blue, and uncountable liver mets, liver was about to fail, AST/ALT/ALP and other numbers in many hundreds, doctors looking at us kindly but even unable to give chemotherapy at that time as it could have happened that my Sandra would have simply… died instantly. But we took that risk as we had nothing else to do… after 3 relapses and 3 surgeries (mastectomy, lymph node removal, cyberknife to lymphnodes), whole breast radiation, she is NED, and liver is now 63 months NED. Future is not guaranteed, in fact, we still get these "oh you poor things" looks everywhere we go, but life is okay, our boy is 9. Yes, we gave up many dreams (oh, how much we'd like to have more children!) but we're moving on and being together brings us… happiness.

If you would ask, I believe most of the people who are in these stage IV forums, have experienced same shock as you do but have moved on and made their lives rule over cancer, not otherwise. And you… you are gifted… just think of these 4 beautiful human beings you are bringing up - your love to them will give you strength to march on, heal, and maybe even become someone who can be cured, however elusive it may sound. Science is miles ahead from where it was even in 2017, when we started. Treatments that were offered are state-of-the art and I believe you'll do well with them. Biopsy will help to confirm, what I believe, will be same histology in the liver. Please also remember that faster disease tends to react better to treatments. Hugs,

Saulius

Thanks all, for your concern and my infusion went well! I had a pre-drip of saline, which was almost the whole bag. And then I had Herceptin for an hour. And NO shaking! I do realize that it could be different each time, though.

When I got home, I was very tired, but my BP was at a normal level, and my fever was only 99. My nurse did tell me that if I didn't do well, the next time I could have a steroid injection into my IV. So that is another possibility.

Speaking of bells….I was Stage 4 from dx, but my 3 liver biopsies missed the liver tumor. I had my dmx, chemo and rads, and then (back in 2003) the nurses threw confetti at me and sang (poor cleaners had to clean that all up). That was before bells.

Then, a few weeks later, my CT scan showed that my liver was filled with tumors, and I have been on chemo ever since. Several years ago, I lamented that I would never have another confetti party again, but the next time, the nurses gave me another confetti party since I was NED!!!

That sure was a teary-eyed experience and I never thought that I would still be battling this stuff after over 22 years.

Stage 4 DeNovo - 16 years. - mets to lung and spine.

Herceptin and Arimidex from Day 1.

Currently, every three weeks, herceptin and arimidex

aprilgirl, love the Stones photo of you and your hubby! Dh and I try to get to a concert at least once a year. Last week we saw the Nitty Gritty Dirt Band in a small venue in Wheeling, WV. I knew we’d like it, but the show elevated us to some kind of magical place far beyond what we ever imagined. Quite unexpected! Afterwards, I said, “I think I just had some kind of religious experience!” (and I’m not a religious person, lol!)

Brutersmom, I’m unhappy when medical professionals look at us older folks with cancer as incapable and sickly. It has made me develop a steely resolve to advocate for myself. My favorite medical professionals have shown admiration towards me for my perseverance. I don’t want to be looked at as “oh you poor thing.” Look, I’m out here living life, plugging away at doing the best for my health that I can and making a go of it. I’d like to be seen as rather competent for all that I’m dealing with.

Several years ago, I had to set a couple of my older sisters straight, too. I told them to stop treating me like I was a death’s door. (exact words). I told them, “I don’t go around feeling sorry for myself and I certainly don’t expect anyone else to feel sorry for me.” And I said “I am a very capable adult.” They were trying to frame my life in a certain way, and I was not having it!