Stomach mets

[Nocillo]

Anyone else have bone mets for years and then advanced to stomach mets too?

[blms]

I do not currently have stomach mets but do have mets, ascites in my abdomen, so as of date, not sure what other organs there may be affected. My abdomen has now gotten quite large with cancer and fluid from cancer but my scans are supposed to be after my next round of taxol in about a month so all bets are off until then. Keep me informed.Bonnie

[Nocillo in reply to blms]

Good luck to you! I do not have ascites. A lot of small tumors in the stomach lining. I never knew there were so many variations of cancer. What a horrible disease!

[blms in reply to Nocillo]

Yes, that is what I had but then it progressed to this after about 5 months. What are you currently on?

[Nocillo in reply to blms]

I have had one cycle of Ibrance and now have to wait until my white blood cells rebuild. Also taking Tamoxifen. I was on Anastrozole and Faslodex for 6 years with bone mets, but they obviously lost effectiveness. I’m having a lot of trouble with anemia besides the white cells. Of course wishing this would all even out! Can’t they at least drain the fluid?

[blms in reply to Nocillo]

I am waiting as we write to hear back from them. My doc may see me earlier than next Tuesday as I think that is way too long as of todays events. I need to lay down and off my feet. It is so hard for me to do nothing!! that is the worst part for me. How old are you?

[Nocillo in reply to blms]

65 It does get frustrating doing nothing but I try and use the time to become more and more accustomed to the ultimate end of life situation. I would rather deal with it early and then not be so shocked if things take a turn for the worst. My daughter is raised, we’re retired, I’ve lived my dreams thankfully. Im certainly not checking out yet, but trying to be practical. Still have things I’d like to do! How old are you?

[blms in reply to Nocillo]

Im 71 and live outside of DC. We have 4 children and they are all great and very close to one another and all live near by. So, i am blessed. My oldest is 41, then 31, 29,25. I was 45 when I had my last son. i have two girls and two boys. It took me the past 4 and half months to come to a comfort of my leaving this world for new experiences. As you have a child, you understand that the most difficult thing here is thinking of the pain our children are going through watching their mother during these times. I know that well as my mother died of MBC when she was 52 and I helped nurse her until she died at home. So, I understand their pain a bit too much. That has been the tough part but I must look at how amazing individuals each one is and what a positive influence in the world that they have because they are all hard working, compassionate and loving people so their contribution to this world, especially during these times of such ugliness everywhere, gives me a sense of accomplishment and peace knowing they will all be fine without me and continue to support one another. Waiting now to see when the onco can see me early--whenever they call! Where are you being treated?

[Nocillo in reply to blms]

I go to the Levine cancer institute in Charlotte, NC. We moved here at retirement to be near our daughter. I started treatment in Seattle with a doctor who had 40 years of experience, would call you day or night, was completely dedicated to his patients. Saved a lot of people with stage 4. I’m still struggling a bit here with my doctor. As you say, knowing that our children are raised and thriving helps a lot. We lived in Europe for a long time and I have wonderful memories to lean on. I don’t find too much interesting in Charlotte, but since the pandemic, don’t go anywhere anyway! I hope they call you soon!

[blms in reply to Nocillo]

same here with new doc

[Bettybuckets in reply to Nocillo]

My dr thought it was in my stomach lining so I had the tests- it was ulcers from the pain meds(NSAIDs) I was so happy!

[Nocillo in reply to Bettybuckets]

My doctor thought it was ulcers and it turned out to be mets. Shocked me and all the docs!!

[Bettybuckets in reply to Nocillo]

Oh dear so that means I am not out of the woods. I hope that they did take a biopsy but it was so rushed! Csn you please share your symptoms so I can be on the lookout?

[Nocillo in reply to Bettybuckets]

My appetite dropped off in September of 2020. I thought I was just getting older and tired of the same old food being in lockdown from the pandemic. I lost 19 lbs by end of November. Beginning of January I started vomiting and kept down about 1/3 of what I ate. I also became extremely weak and couldn’t get out of bed. I was losing a lb. a day. Finally after CTs for gall bladder etc., they did endoscopy and discovered small tumors in my stomach lining. Had to stop all previous meds and get my red blood count high enough to start Ibrance. I only got one cycle of that done and am on hold again. They have me on anti nausea which has stopped the vomiting very well thank goodness. Having another transfusion on Friday because I keep losing blood. I’m not feeling as weak as I did before at least. I think that covers it in a nutshell. Let me know if you have any questions. Lost 40 lbs. total.

[Bettybuckets in reply to Nocillo]

Thanks that was helpful... I too feel like I’m falling apart from the inside. Hang in there! Hope you have more good days than bad.

[KMBL_]

I have stomach mets through my whole stomach. Long story, but my bone mets were missed for over six years, so no treatment. Once it spread to my stomach, I had symptoms and found it through endoscopy. Symptoms started October 2018, endoscopy in April 2019, diagnosed May 1.

[Nocillo in reply to KMBL_]

What is your treatment plan? Any improvement on current endoscopy? Sounds like we’re in the same boat.

[KMBL_ in reply to Nocillo]

After almost two years on Ibrance and Letrozole, I may have progression to my bladder. I am suffering with bilateral hydronephrosis, diagnosed after an emergency room visit this past weekend. I have a urology appointment first thing tomorrow. I have never been no evidence of disease, and my cancer doesn’t show in PET, CT, or bone scan.

[KMBL_ in reply to Nocillo]

I don’t think I ever came back to let you know I did not have hydronephrosis. After the kidney scan, the radiologist looked again and figured out when my bladder is full, it makes my kidneys look like they did. All is well with my kidneys and bladder, as far as I know. In the last month, I’m losing weight again and having the nausea. I’m at a loss. I know the mets are all still in my stomach because I had my fourth endoscopy a few months back. All of my cancer is still everywhere, so I have no clue if the drugs are starting to fail. I had an FES PET scan in a clinical trial. It saw the mets in my stomach finally, and I also found I have two micro mets under my arm, as well as all bones and bone marrow from skull to femurs.

[Nocillo in reply to KMBL_]

I hope if the drugs are failing that something else is found that will work for you! Such a hideous disease, as I suppose they all are. Good luck to you!

[KMBL_ in reply to Nocillo]

Thank you. I e been on them just over two years.

[Georgiamjb]

Hello- this is my first post and I am so thankful for this community. I was first diagnosed with ILC 10 years ago. In August 2020 I was diagnosed stage 4 with cancer in breast and a tumor in my abdomen. I recently learned that I now have stomach Mets. I’ve had 4 months of Ibrance and Letrozole and my last scan showed cancer is stable but didn’t pick up the stomach Mets. We found that by endoscopy as I’ve been struggling with low hemoglobin and have had several transfusions. The GI put me on lots of reflux meds and I’m hopeful that will calm things down. Pleases keep me posted!

[Bettybuckets in reply to Georgiamjb]

I just had the endoscopy cuz of low hemoglobin... they didn’t find stomach Mets but found ulcers instead... I am still worried that they will be getting biopsy results and telling me it is still stomach Mets.

[KMBL_]

Sandra, I love how knowledgeable you are and I hope it’s something simple and fixable. I’d rather not be No. 51. My case has been a shit show from the beginning. They never even found it in my breasts. And mine is lobular. I’ll let you know when I find out, but it may be a little while. You know how long biopsies take.

[Haneen2012]

My mom moved from NED to peritoneal cancer with ascites It was devastating to us her daughters.

She was put into 3-4 cycles of taxol.

She finished 2 cycles and the ascites were dissolved. Her mets are still there. She will be having another assessment after the next two cycles. Then the plan is for her to be put on ribociclib( Kisqali) for as long as she can endure.

I pray and hope she lives many many more years ahead. We need her, and our kids need her too.

Mom has been always active, she still is active thank god. And I am happy she is as this is the thing I care for the most.