A place to talk death and dying issues

I agree with sadieservant, the losses seem to come in waves. It’s difficult to process for sure but I also ache for those who simply stop posting. To counterbalance that I imagine that they no longer post because they are doing well and just living their lives. This may be true but mostly I just find I need this bit of self deception to cope.

Sunshine, I’d like to know too. It was hard when I first joined BCO, I wondered about so many people and thought everyone was dying. I really appreciate those who tell us they’re taking a BCO break before dropping out for a few weeks. I’ve found myself doing some internet sleuthing for obituaries, which I sometimes feel weird about. Having been on the wondering side of it, my husband has struck instructions to notify a few key threads here, within a day or two of my death.

Me too on the obituary trolling but even that’s difficult as we often have little to go on. One of my first experiences with BCO was someone I considered a friend suddenly disappearing. She was communicating, had the flu over Christmas and then… nothing. She had co-morbidities so I imagine that may have been the problem but it was so unsettling. I don’t have a big following on BCO and also no spouse/children but plan to have a friend post when this @$&# disease finally gets me.

There is a thread from the moderators: In Memoriam of those in the BCO Community. I search it occasionally but it is long... sad

Wait--BevJen? When? We were PM friends via this forum. I knew she was investigating other sources of info and treatment, but I am in a state of shock over this news.

Please respond with whatever you know.

Tina

Seeq,

Many thanks for this response. I read Bev's obit, found more and scrolled through all of the July posts in the Liver Mets thread. I am stunned by what feels like her very sudden loss, as well as our losing Shetland and Moth almost simultaneously. As these communicative long-timers pass on, I feel more alone.

Who can I share complaints and fears with now--- and how would I dare, aging outlying survivor that I am?

Tina

Hi everyone, I last posted in April, describing the poor prognosis my onc had given me and my end of life preparations. On May 11, at my onc appt, we got the results of my genomic testing from Canexia. (I've never had a good biopsy as mets were all to bone. Then, like an answer to my prayers for a lesion to soft tissue, even an organ, last spring I grew a plum-sized lesion in muscle on my upper back that they were able to pop out like a cyst and get a great sample.) Turns out I am definitely HER2- (I was considered borderline when original breast lump was tested and was treated with HER2+ drugs), and I got genetic info that is very hopeful.

I have the PIK3CA gene mutation, which, along with my HER2- status, makes me a good candidate fora targeted chemo called PIQRAY. It is not traditional cytotoxic chemo, which I no longer will accept. It's a daily oral med, and I'm on my third month. I'm not having any problems with blood sugar, which is a common side effect. My side effects are very tolerable and I had a reduction in bone pain within the first month.

I also have a Tumor Mutational Burden score of 29, which makes me a great candidate for Immune Therapy. The TMB threshold is 10, so I qualify, and I will use Keytruda eventually as a treatment. Keytruda blocks PDL1 (which makes cancer cells "invisible" to my immune system). The side effects are few and rare, and it works slowly, but it can "teach" my immune system to kill my cancer cells. And it's fully covered by Medicare. It's an injection that I'll get every 3 weeks when Piqray stops working for me.

I've at least bought myself more months with the PIQRAY (average months without progression = 8). Hoping we can eventually get the Keytruda on board so my own body can mount a defense. I still manage pain in my skeleton, but hope is a wonderful analgesic.

I'm setting to one side the activities of 'getting my affairs in order' for now, so I have resumed traveling and having fun. I've taken each kid on a short mom+child trip to the destination of their choice, and my wife and I are going to Mexico in November and Vietnam in December. It's wonderful to feel free from the pain and malaise and nausea I was living with last winter/spring.

I know that many people here do not know Bigbhome (Claudia), but some of you have been in these boards long enough to remember her. A few years ago she and her husband sold their house in Florida and have been living their dream, traveling across the country with their horses, staying in campgrounds along the way. They bought some land to settle down in Arizona. Her health started to go downhill two weeks ago and she is not expected to live beyond the end of the week. She has been a good friend to me for 7 years. She will be missed.

pearl-girl: Thanks for posting. It lifted my spirits So glad you can travel, sounds wonderful.

I didn't know her for long but Moth was one of the few people I talked to outside of this site. Her daughter has been trying to go around and post online to let everyone know what happened, but she said Moth/Margaret had a huge online presence so I think her family is aware of how many people loved her. If you didn't see it yet they have a site set up if anybody wants to leave messages, and it also has a lovely slideshow of photos: https://www.forevermissed.com/margaret-kinga-young/about

Lynne-Thank you for letting us know. May Claudia rest in peace, or maybe riding one of her beloved horses free from pain. My condolences to you on the loss of a dear friend.

Thank you for letting us know Lynne. I’m sorry, as I know you grew close. Rest well Claudia.

50sgirl, I’m so sorry to hear the news of Bigbhome’s passing. She had a beautiful soul. One of her last posts was thanking us members for our kindness and compassion. I was just re-reading it, it was earlier in this thread, and moth was the first to reply to her. I am so sad that they are both gone now. May Claudia and Margaret both rest in peace.