New here - want to share and looking for hope

suelee20

Hi, I’m new here and just looking for a place. My husband (52yo) was diagnosed in Sep 2018 with stage 4 Mets to liver and has in the last year spread to lung.

He had surgery in Oct 2018 in the colon and then started chemo in dec, followed up with radiation, and then tried ablation in the liver to remove the liver spots. They weren’t able to get everything so continued chemo and tried laser knife radiation. Was steadily moving along trying to contain the cancer but new spots on scans would pop up and we’d try a different concoction and things would shrink.

In august 2020, a new spot at original site and has been downhill since. He is on his 4th line of treatment and the cancer has become unstable where the tumor in rectum had caused a blockage. He had a stent inserted in July 2022 but he still goes to the bathroom every 30 min-1hr. I can’t keep track anymore of the combo of various chemo. He’s in pain, angry, exhausted and is basically stuck at home with a depressing outlook on life. The tumor at his original site is considered inoperable which is what causes him the most pain because of where the placement of the stent is located.

I am scared, lonely, and sad for my kids. we have 3 kids aged 14, 12 and 9 which are his reasons to live. I feel lonely because I fake it at work because who wants to listen to me or watch me cry. But It’s also my place to escape. And then I feel guilty that I want to escape. I see him becoming more angry, on edge about everything, watches the news all day because he’s worried about then state of the world and what our kids will have to grow up and what I’ll likely have to navigate on my own.

At this point, I scour the trials website every day and just pray that something will pop up. There is phase 3 randomized trial that may open in Jan here in Seattle which I hope he’s eligible. Our oncologist is supporting us in this path between trying to continue the soc to try control. I don’t want to force him as I feel many days very selfish but I do feel like he wants to continue the fight. he’s willing to listen to his dr and me and is he thankful that I try to find options for us to all discuss but just so hard to keep up the hope.

NewHere

I am so sorry to see that you had to join the board, but it is a good place to be.

I updated some information on my profile last week and somehow broke the formatting, so need to fix it up. But please read this:

csn.cancer.org/profile/discussions/NewHere

(Please put http:// for some reason I am getting a message that something is being blocked)

The long story short - I am starting 9th year, Stage 4. Mets to lungs (over 80) and spine. Was told inoperable and incurable in late 2017. Prior to this year (2022), two major surgeries including part of lung removed in 2016, 3 rounds of radiation, 61 rounds of chemo, two drug trials. Started 3rd drug trial beginning 2022. But did not work. And cancer had a growth spurt. Incredible pain, turns out spine Mets grew and another back tumor radiated in 2018 also grew after stopping.

The plan was to have spine surgery, then radiation, then go back to 2015 chemo (FOLFOX) to see if it would work since I had no options left. A phase I trial opened up right before surgery, so plan changed to surgery, radiation and the drug trial (an immunotherapy trial, which was going to be my fourth). I had to have the surgery and radiation because the pain was astronomical and there was a high risk for other issues due to location of tumors. So even though the lungs were really bad, the other things had to be done first. I found out in the fall that the doctors were not sure I would make it past the summer.

But this Phase I trial is actually working. Tumors shrunk, no more coughing up blood, was back to swimming, biking, running in mid-October, including 3 hour bike rides on trainer and hour and a half runs. (I am not an athlete, but started triathlon training in 2017 to try to keep as healthy as possible. This helped my body compensate for all the cancer in my lungs and doctors believe it is one of the reasons I am not on a couch on oxygen, or worse.). I had a set-back in October, back pain, but it is now back under control and I am starting to run/bike again.

Continue to keep an eye on the trials like you are doing (https://clinicaltrials.gov/ I am guessing is the place or the NIH link). Continue to ask the doctors. Try to contact places directly. I am at Memorial Sloan Kettering and when they had no options, that is what they recommended. Dana Farber, Yale, MSK are worthwhile to try. I had a bad experience with MD Anderson when trying to get a second opinion, so not a fan. But it is one to check. Also try https://www.foundationmedicine.com/test/foundationone-cdx. They do a comprehensive report of mutations and other things in the cancer. Includes what drugs are known to work or not work, plus current trials.

Look into support options for YOU that are available through where your husband is being treated, the American Cancer society or other places. Being a caregiver/family member in this is not easy and that may help. Being here or on other forums may help with the support you need.

When I was diagnosed, Lonsurf was not approved for my cancer. In 2020 it helped shrink my tumors a bit for awhile. (Started May 2020, August 2020 showed reductions, and I was on it until early 2021 when tumors started growing.)

In 2017 when I went for a second opinion when I was told inoperable/incurable immunotherapy really was not an option due to my mutations and the research at that point. My current drug trial is an immunotherapy trial.

It is not easy at times. But, as mentioned, I am starting my 9th year.

suelee20

Thank you newhere! Your journey gives me hope and to not give up on this ride. Your active lifestyle is amazing. I would like to help him with that as I know his qualify of life and sense of purpose has diminished since he had to stop working this past summer. He wants to be more active but his incontinence, blockage issues, and the pain from his stent has been very debilitating these last few months. He has to go to the bathroom every 15-30 min so he feels so trapped at home. I will do my best to be supportive as I want to be strong during his darkest moments.

I will also update my profile to help give an idea what my husband has gone through these last 4.5 years. I’ve also asked his oncologist for a more comprehensive genetic test so thank you for passing on the foundation one info. I’m also reaching out to a couple surgeons in ca and tx to get a 2nd opinion.

I am sending you positive thoughts in 2023 and success with this clinical trial! I’m so encouraged by others who are taking on this fight so boldly. I know I don’t know any of you all but I hope to be able to share and read other future successes this new year.