Dad diagnosed last week, stage iv with innumerable mets

[brandon10]

Hello all,
Glad to have found something to look up previous conversations and to join new ones.

My dad was diagnosed on 6/15/2020 with stage 4 rectal adenocarcinoma with innumerable metastases to the liver. The entire right lobe of the liver is covered, and the medial segment of his left lobe also has lesions. The primary mass is just above the anus and has caused what is estimated to be a 90% obstruction or the colon. He also developed ascites which I am assuming is coming from the liver. There is no peritoneal invasion or spread to lungs, bones, or brain.

As of Tuesday he has started his chemotherapy regimen, which is FOLFOX for 6 months every 2 weeks. Then the plan is radiation and hopefully surgery. The worst part of all this is, he has no insurance currently. My dad has always been financially unwise and could not afford to have ACA health insurance. I am trying to get him on Medicaid, but with his unemployment benefits (from the pandemic) he is making $962/week before taxes are taken out, so he may not qualify.

The rest of his remaining family is too old or too lazy to help out. I live 4 hours from him and am trying to juggle my work, my live-in relationship, and his treatment. I feel extremely overwhelmed as I am taking care of every aspect of his life for right now.

I'm extremely hopeful that the chemo shrinks his tumors down to where it is operable, but my energy keeps going into the negative. He may have to have ascites drained before he is released from the hospital tomorrow. They drained 2.25L from him after he was admitted last Monday. He is very tired. I am scared and I think he is too, although he remains positive in his demeanor.

Thanks for listening.
Brandon

[Lee]

Hi Brandon, Welcome and sorry for the reason you are here. Yes please be there for your dad.

How old is he? What do you think is overall health is like? Is your dad at a local hospital or a bigger type hospital. There should be some type of a social worker at the hospital who can help set us your dad with Medicaid.

I am not an expert dealing with liver mets, hopefully other will chime in. Please know there are many people who have survived this cancer with liver mets. Yes, the chemo will help shrink the tumors. Am I correct to assume he has rectal cancer vs colon cancer? They tend to do radiation on rectal cancer. I had radiation about 16 yrs ago.

Feel free to vent her at any time, we do get what you are going through. It can be especially rough in the beginning. There is a wealth of information here. Know that you are not alone here.

Keep us posted.

Lee

[stu]

Hi Brandon ,
Welcome and I am glad you reached out . Can I just say it’s ok to have negative thoughts as this is a horrible situation to navigate , the good news is the success of the treatment is determined by his response to chemo and not our thought patterns and I found that helpful when enduring those hard to shift moments. And also to embrace the more positive ones . I think we all bounce around there for a bit but it gets easier if you see chemo achieving something and it gives you some energy and direction . Hang in there .
Also it’s great to see you helping out even although others seem to step back . I don’t think you can underestimate just how powerful support can be right now to people enduring treatment .
My mum had a well established spread to her liver . She had two years worth of chemo and surgeries to endure but she ended up getting 73% of her liver removed . She is still doing well and she was diagnosed back in 2009 ! Her tumour markers are a bit elevated just now . She has had many good times since diagnosis . I used to find it encouraging to read of other people who had managed to come through treatment to find some quality of life .
Look after yourself too . This is a bit of a journey for carers too and you do need to find balance .
Take care ,
Stu

[kandj]

I am sorry you are here, but welcome you! My husband also had innumerable mets to his colon (but no ascites). After getting a bad review of possible surgery from a surgeon at MD Anderson we sought out Dr. Nancy Kemeny at Memorial Sloan Kettering. MSK is in NYC, which I know with all that is going on is a little daunting. I am not even sure if she is taking on new patients in the current climate. But, she was our best hope and has remained it. DH got the device she has basically pioneered for use in metastatic colon cancer to the liver implanted in Dec of 2015. It is called the HAI (hepatic arterial Infusion) pump and it pumps a certain kind of chemo directly into your liver. Because of the hepatic artery and its function, the chemo mostly stays in the liver. They also do a systemic chemo (through a port) at the same time to target all areas. After 5 rounds of this HAI chemo DH was able to have a liver resection. They removed several tumors, ablated a few big ones and many many small ones. DH did have a recurrence in the liver the following year, but a smaller tumor load. They did radiation on those and for almost three years (knock on wood) his liver has been clear of mets. He has had a few lung things pop up, but those have been dealt with as they come. He is coming up on 5 years of surviving this beast. If you can, and your dad is willing, reach out to MSK and see what they can do. Get his scans and any treatments to Dr. K's team and then try and see if a social worker can get the rest handled with you. Best of luck!

[Hopepray]

Hang in there brandon10, and so good to see you got your dad's back.
I know it's tough, but try to be positive For me meditating and praying have always helped. Remember more positive you are the more confident your dad will be and that's good for his recovery.

I pray you will get out of this soon and healthy.