Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
Had my post scans follow-up with MO today. Still stable although I have mild pneumonitis (symptom free except when I first wake up) and a small lesion in kidney. Since I only have one kidney, my internist has referred me to urology. MO wants to keep me on Ibrance and anastrozole and monitor. She did order an MRI of lower lumbar area since I have increased pain. She suspects nerve impingement since bone scan is stable. She hopes the MRI will help my pain management doc with treatment recommendations. I was kind of surprised that she didn’t have me hold my Ibrance for an additional week as my WBC was 2 and my ANC was .96. No wonder I’m pooped.
Here for pocket duty for all in need.
Re: My Husband, My Life, My Love, My Family, My Cancer
@mkestrel I am so sorry about your liver progression, in your pocket supporting as you move forward and find out next steps in order to deal with it. It is hard to do for sure, one day at a time as we all know. Give yourself a chance to enjoy something today. I came across an old post with all your beautiful flowers, are there any inside you can tend to?
I slept OK, had a lot of different dreams, none bad though. Supposed to be gloomy and cloudy, no snow til the weekend and then a fair bit. Temps during the day will still be above freezing. Since I am rarely out except for appointments, I will still get melter and put together my own wee shovel to keep outside clear for me. Locate cleats and use spikes on my cane. Overkill but I can do what I need to do. No more overthink though.
I am just having some penne pasta with chicken in it, going to dispose of the rotisserie chicken, I just have no desire to process it at all. Ground chicken or the chicken in my meat pies is sufficient for me.
Wound up having just a plain frozen penne alfredo, bit of chicken in that, added a bit of salt and sour cream and onion seasoning and put a squirt of galic mayo, not too much which was good.
I am disposing of the rotisserie chicken, bones and all. I started with a large trash bag, put an elastic on then folded the trash bag, two layers of protection, took 3 white bags with febreze in them, put the chicken and first bag there and finished with another black bag, put an elastic again and double layered it. I do not believe animals can get to it when put out since it has 7 layers of protection. I have to stick to the stuff I like. When I shop again, will get the 4 pck of lean ground chicken, 1lb each and just cook it up in the pan, can be seasoned to my taste. 10 bucks from Walmart for four pounds of meat.Sw
Now unless DB decides to take me out for supper on my birthday, I am definitely not counting on it, still planning to buy a chicken dinner from a restaurant called Swiss Chalet and see what I want to get then. Also cancelled unused streaming channels as well, I mostly watch youtube stuff, can get enough shows with a vpn and streaming.
I do hope all have a good day and in pockets for everyone.
Re: How long have you been Stage IV?
@livinglifenow , @eddiej , @AJ , @tougholdcrow Hey ladies I went to my doctors appointment yesterday and she said my PET scan was ok and didn’t show any progression from the last one.. So she said I’m stable and that at the moment they would shelf the idea of surgery for right now and now I go every 8 weeks to see her or nurse practitioner and get my Xgeva shot and PET scan every 4 months. I’m thrilled and relieved. I hope everyone is doing ok. I’m always praying for everyone on here.❤️
ssales13
Re: Are you currently (or have you been) in a Clinical Trial?
So, UCLA has uncovered what could be a big step for reversing hair loss and thinning- its a topical treatment called PP405 that activates dormant hair follicle stem cells and can work on people who are either partially or, totally bald, regardless of how long they have been bald, or have alopecia from stress or genetics, or lost hair from chemotherapy, etc, etc- the whole gamut of people who would like their hair back. It turns out the stem cells for hair have not been destroyed or permanently inactivated, but rather are in a dormant state where they use mitochondria to make ATP, rather than burn glucose.
And so this is a metabolic drug which flips that switch and causes the follicles to use glucose again for growth, so the hair follicle stem cells then can move from being dormant to growing. And unlike Minoxidil, which gives like a peach fuzz, this can restore all the phases of the hair growth cycle. The drug moves them from using mitochondria to make ATP energy to burning sugar, and thats what's needed to reactivate them.
They are just finishing up an early phase 2 trial, where about one- third of the people they tested re-grewy ca at least 20% new hair in just 8 weeks (compared to zero taking placebo). So its seems to work well and relatively fast. I'm not clear if one would have to take this the rest of their life, as is the case with minoxidil.
They are no longer recruiting people into this trial as they wrap things up and will presumably open the next one fairly soon, probably a larger phase 2 but maybe even phase 3. Importantly, there were no side effects, and the drug is a serum applied to the scalp which does not get into the bloodstream, so doesn;'t interfere with organ function, or other meds people take, nor affect hormone levels. So I hope it turns out to be a big deal, and maybe can move quickly through the various trials, as they can quickly determine whether hair growth happened, to what extent, how stable it was in the longer term, etc
Here is a link to the trial:
https://clinicaltrials.gov/study/NCT06393452
And here is a description from YouTube:
Re: Are you currently (or have you been) in a Clinical Trial?
For those of us with ESR1 and PI3KCA mutations, there is currently a Phase One trial of a new KAT6 inhibitor that is being tested +/- Elascestrant. Finally, a trial that doesn't just use Faslodex!!!
Re: Immediate reconstruction vs. going flat now and possible reconstruction later
Hi @melissa_s
First I should again qualify that my delayed recon was 22 years ago as I noted, so what was done then and what is done today may be different. No, I did not have an expander. As i recall, the skin sparing mx just ended up with excess skin in the area. It's not really formed into a breast. This is why I said if you do this and later decide to just stay flat, you might want another surgery to remove the excess skin.
I should also note that I don't know anything about keeping nipples. The first mx it was something that was rarely done. The 2nd mx, my tumor was too close to the nipple to be able to keep it.
So, on your options list, for me, the 1st time was delayed flap reconstruction (no expander).
Best of luck to you.
mandy23
Re: Latissimus myocutaneous flap
Hi @sandyk1 -
Sorry you have had to join this not so exclusive 'club', but glad you have found us.
I had a lat dorsi flap as recon on one side. I had to google lat myocutaneous flap as I had not hear of that. It sounds like myocutanous flap is a SUBSET of the lat dorsi flap.
In your case, as I understand it, they would be doing the flap to repair damage done by radiation and you would still be flat? It sounds like the type of flap you are doing was kind of a predecessor to ps realizing they could use this for breast recon. I found this article in case it helps:
In my case, I was happy with the procedure and haven't had any lasting problems. My breast surgeon did set me up with some PT as soon as my PS cleared it just to be sure my muscles got completely healed.
I have heard of several people with issues as a result of their lat flap. Often, I think this is related to how experienced the ps is at doing flaps. So, the most important thing is to be sure that is the case.
Good luck to you.
mandy23
Re: how about drinking?
wow NM. Great view. Thanks for sharing. I think Mom will be happy once she settles in. And maybe you can drop back on the visits to twice a week. I know you must be ready for some "ME TIME".
minustwo
Re: Can we have a forum for "older" people with bc?
Cindy - sending prayers for your niece. If it is pancreatitis that is nothing to fool around with. My brother developed it after gallstones and it took several months to clear up. Of course, he waited a very long time before he finally went to the ED. Hopefully your niece can be treated quickly.
Betrayal - welcome home! Where are you off to next?
Sandy - I hope Bob is doing okay. That sounds like a nasty fall.
Chris - I hope you get your SNAP benefits soon. Wishing you good luck with the thumbs.
Our pool is being removed this week. When the liner was removed we discovered the metal panels behind the liner are rusting and the PoolCrete floor is cracked. We are not surprised but it reinforces our decision to remove the pool. The cement patio on the bottom right of the picture below is cracked and crumbling. It is also being removed. They expect to finish by Thursday.
Waving hello to all.
harley07