HER2 Support Group Forums - Shaysmom (Kelly)

Kelly hasn't been on here in a while and since I thought some may be wondering about her, she said I could post on her behalf.

She's been fighting Stage 4 ILC her2+ for about 11 years now. Lately it's been getting worse. As most of you know, ILC likes odd places to settle. She's been through a lot of treatments and clinical trials but still keeps the faith. Here is a copy of her last message to me:

"...Not sure exactly what's going on Bc bilirubin is still too high. I really need tx. Tonight could tell the omental mets are bigger, similar to ascities it's like walking around carrying extra weight and I cannot stand up straight. Unlike ascities which at least could be drained just need tx to debulk them. Scary that it's 10 days and I still look a little yellow.

Been sitting with Shay (Kelly's son) at night. Trying to lay groundwork a little that I may not get much better. Pallative care from Holy Reedemer comes Tuesday...Nurse checking in, social work. Maybe even help with house stuff.

My insurance has been giving us a hard time with my drugs. Chuck (Kelly's husband) is fighting trying to get hours at work. The demotion thing isn't really working out but like he said is this best time to switch even if he could find something. So he is busy with that . Last week he was 2 hours away. I have advocated for myself forever and I just don't have it in me to deal with insurance. So they can help with that stuff too.

I'm pretty much done with last oncologist except for the procedure again (Kelly had a stent put in her bile duct) if I can have it done. I am so upset with my treatment there. In hindsight my CT scans show progression in OCT. Should of been off trial then. I asked about liver MRI in OCT. Was told to ignore it. Only time anyone talked to me was when I sent threatening emails. Doctor admits she may of 'under appreciated' aspects of my disease. She ignored my liver for three weeks until I sent email that said, I could be dead, no one is addressing this except research nurse who said think positive. I'm telling her how bad I feel and she is like so your breathing is better. No it's worse. Having issues on steps. So if I cannot put better in chart can I put the same. I'm like I guess you are going to put whatever you want down despite what I say. ITS WORSE. Then I swore I was in twilight zone. In dec, tell trial nurse the pills really aggravate my reflux. She says absolutely not. That isn't possible and it must be something else. Then in jan she asks if my reflux is worse weeks on pills and Herceptin . I saw no it's bad in general but you said pills don't do that, she is like I never said of course they can. Chuck is like no you said exact opposite and the there was the "bad batch" of taxol I got that caused the rash. If they didn't almost kill me it would be funny.

But I'm where I am Bc I didn't listen enough to my inner voice. I trusted wrong people. But it's not in my hands.

I grateful and thank God for each day. Mets to so many many places. Not a lot of mbcers are still waking up with these mets. God has blessed us.

I have havelen and navelelbine left. I didn't tolerate perjeta well but besides yourself I know two others that did the p/h with navelbline. So plan is if I can get liver to normal and have tx. Try havelen and then have p/h/n left. I just don't think I have the strength right now to do perjeta. I stopped it Bc of side effects cancer was stable. Exactly the same.

Share my story anywhere. I always say, If I had to go through and something I did or went through helps someone out, maybe gets them out of dark place or helps with tx or se . I'm all for it.

Last year a lady in FB was told she had stomach nets. Nothing to do and should go home and die. I said , have you tried TPN. How about some other things. She was where I was in 2012 with gastroparesis and bowel obstruction. Etc....She found new doc, went on TPN and has pretty good quality of life now. 9 months later. I feel like whole experience I went through really helped someone else out.

Love
Kelly"