Best Of
Re: Just diagnosed with ILC mets
Kris, thank you for sharing. It gives me a lot of motivation to fight for my survival. Looking at the damage done to my body I understand it was there way before May 2024. And I didn’t know. All this time I was doing Prolia twice a year to control osteoporosis under onc observation. But apparently doctors finding cancer by accident. There is no established protocol to follow up on cancer patients. We have certain markers in our blood, like CEA. It can tell you something is wrong rather sooner than later. But doctors go by symptoms and insurance. With cancer when you have symptoms it’s too late.
My problem - I cannot sleep more than 5 hours. Have to take pills. Now pills are piling up. I take Gas-X to help my damaged liver digest food. Started Letrozole last night. Taking Levothyroxine in the morning etc. Back in May after my diagnosis I had a feeling that I am looking at this world through the glass wall. I see everybody smiling and happy, only I am not in the picture. But now I am slowly coming back through that wall to take advantage of what I have left. Life is so beautiful
Please keep in touch. Hugs and kisses
Lana
laguna24
Re: My Husband, My Life, My Love, My Family, My Cancer
Quiet weekend for me. Just waiting for mayo and peanut butter from Amazon, already robot vacced the living room, will still need duster in the hidey holes, charging for now and will put away, Tigger loves to follow it around, Ava stayed in my room but has come out now. Laundry up next and some floor mopping, just using the broom I covered with a sock mop and spraying the floor with the enzyme and deorizer mix, smells pleasant.
I slept decently last night, adjusting myself for the morning appointment on Wednesday.
I decided to try the Great Value frozen spaghetti but I did chop up cheese with croutons and added some beefless ground to the top, cooked all of it from frozen spaghetti for 4 mins, plated and seasoned with sour cream and onion seasoning, salt and garlic, added some wheat bran, mixed together. It was quite good, beans or lentils will feature later on in meals since I used up the beans and forgot about opening new ones.
Hoping you all a good afternoon and evening and in pockets for those who need it.
Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove "A crow jumped into the birdbath and gulped the water down." I meant to tell you that I had come by for a visit.
Re: My Husband, My Life, My Love, My Family, My Cancer
Here for pocket duty. Praying for good results🙏🏻🙏🏻.
Another baseball weekend. Oldest GS made it to the championship game which ended up being a nail biter. Sad to say they were on the losing end but it was a great game to watch except for the fact that the clouds came in, the temps dropped and the winds started to howl. I was freezing in a long sleeved shirt, heavy sweater and blanket wrapped around me. Teeth were almost chattering.
I wish we could share our rain. We are 7” above normal. Our grass is ankle high as it’s too wet to mow.
Sending wishes for painfree, peaceful days. HUGS!
Re: Are you currently (or have you been) in a Clinical Trial?
Hi everyone,
Welp, it's official: I progressed on Halaven - the existing liver tumors didn't grow, but slightly more popped up. Next step is a clinical trial.
I am ER+ PR- and HER 2- (0). I have no mutations (dang it). I don't think immunology is an option for me (HR+, low TMB (5) and PD-L1 negative.
I've been down the rabbit hole looking at three different facilities.
NEXT Oncology:
APR-1051 | NEXT | WEE KINASE INHIB | |
|---|---|---|---|
NUV-1511 | NEXT | DD CONJUGATE | |
TAC-101 | NEXT | SYNTHETIC RETINOID | |
CLN-418 | NEXT | IMMUNE ACTIVATOR | |
MD Anderson Houston:
SON-DP | MDA | CELL CONVERTING | |
|---|---|---|---|
Mary Crowley Cancer Research:
JAB2485 | CROWLEY | AURORA A | |
|---|---|---|---|
KT-253 | CROWLEY | MDM2 DEGRADER |
I'm very interested in the SON-DP trial because according to the write up, they had a 3-year response with rodents. I don't know exactly what that means, or if it's a good response, but it sure sounds good to me. There are probably a ton at MDA, but I'll just have to do research when they give me something to consider.
I've also had drug-related pneumonitis which disqualifies me for a lot of studies. My cancer is growing fast so I can't be without drugs too much longer, so time is of the essence. Whoever can get me on a good non-immunotherapy trial first will be where I go. My oncologist suggested if it's too long a wait we can do a bridge chemo, but I'd rather not have to mess with it.
If anyone's interested, I uploaded my caris report. It has a crapton of information, but I don't think any of it will really help me. I am curious though why my BRCA 2 is 95% and it's never been mentioned as something to target. I'll ask her on Wednesday.
Anyway, my question is does anyone have an opinion on which way I should go on these trials? I would love to trust the trial doctors to tell me the best one out of all of these, but I'm concerned they're just looking for bodies to put in their studies. Is that too cynical?
If you made it this far, thanks for reading. I'll update when I know more. Hopefully, I'll be on one by next week. My liver is twinge-y and I don't think that I have much time to mess around.
Lauren
Re: Starting Chemo May and June 2024 Support Thread
@sarahjunefox I went today. I explained to them my situation. They were very thorough & compassionate! I feel they went the extra mile! I'm having a tooth pulled today and afterwards will be "cleared" for treatment. I'm sorry your teeth are so sore and keeping you up at night. I hope you are able to go when your white blood cells are up. It's never fun going to a Dentist but I feel very important for us!
dw0330
Re: Starting Chemo April 2024 Support Thread
Thanks @bailey.boo and @lbn2222 for further explanations. I just found out that they will schedule another PET scan when I go for my 4th treatment to see the progress and another ECHO in July. I'm already nervous that the PET will show up something else and/or the tumor not responding. Got to get a grip and pray about this and stop worrying.
I don't seem to be as educated on my scans and biopsies as you guys. I was so overwhelmed at diagnosis that I just barely absorbed what they explained to me. I need to review those reports and write down questions for the surgeon and oncologists.
You ladies are so together! I am just focusing on chemo and that's about it.
grammie2
Re: Starting Chemo April 2024 Support Thread
@bailey.boo and @lbn2222 I've not spoken with a radiologist yet. The surgeon discussed it and stated no matter what I do breast wise, because of the nodes I will receive radiation. If you don't mind me asking, can you tell me how the decision was made for mastectomy? My surgeon said with the disappearance of the tumor I could opt for lumpectomy. I'm now thinking maybe I should get a second surgical opinion. With being HER2+ I have concerns about spread and reoccurrence.
And please include me to whatever thread you guys go to. Thank you !!!
grammie2
Re: Starting Chemo May and June 2024 Support Thread
That is an amazing poster that gets right to the heart of it. Thinking of you today, @sarahjunefox❣️ Hope all goes very well for you.
I have my second appt with my main oncologist this afternoon. I’m compiling my list of questions.
Re: Starting Chemo May and June 2024 Support Thread
I'm starting to get anxious. Today, I'm visiting the dentist. I'm very frustrated because I wasn't aware I needed to take care of any dental issues before treatment. When I asked my Oncologist about it she didn't seem very concerned. However, when I started reading about it seems it is a pretty big deal. I believe the doctors do this all the time so they are a bit desensitized but this is my first time with breast cancer. Almost everything I am learning is from this forum, which I most grateful to you all!
DX 5/16/2024 IDC Stage11 HER2+ ER+ PR -
dw0330