What to do -- husband getting obstructions

[cheryl9850]

Hi! This past year has been a nightmare. My husband was diagnosed with stage IV cancer, probably appendiceal but not confirmed, a year ago. Went in for routine gallbladder removal and came out with this diagnosis. On CT scan, no other organs affected, BUT peritoneal spread. Two doctors have said inoperable because the cancer is covering his intestines and has tethered them together.

At one point he was off chemo about 2 months waiting for foundation one testing and a clinical trial. Results came back inconclusive due to specimen quality so we are now waiting for results tomorrow from OSU from Precision Medicine after a new needle biopsy and better specimen hopefully.

Problem is my husband is getting obstructions/blockages every other week from cancer/chemo/oxycodone. The surgical oncologist here in our local hospital has said he will try to operate to remove section by appendix with the biggest mass to help with blockages. Other than the laparoscopic attempt at gallbladder removal and the needle biopsy, he has had no surgeries on this.

I keep wondering that since no one has been able to confirm type of cancer and we are getting to the end of our rope here, maybe we should consider the surgery. We keep waiting for something to shrink the cancer but it just isn't happening. He has had FOLFOX/Erbitux and 2nd and 3rd rounds now of FOLFIRI/Avastin. The only things we know for sure about the cancer are it is kras wild and mss. Can anybody please pass on some/any wisdom to me? We are feeling very lost. I am scared, so very scared, that I am losing him and fast. Thank you.

[Hapa]

Hi there-I have some thoughts. Please PM me.

[jhocno197]

Can they do an ostomy of some sort & bypass the areas of blockage? Or is he getting blockages in the upper small intestine as well?

I'm sorry.

[rwightman]

I do not have any advice other than my team at UCSD specializes in appendix cancers. Not sure where you are located, but if you want their information please PM me. I have a surgeon and an oncologist - the majority of their patients are colon and appendix. Maybe a second opinion would be in order.

[cheryl9850]

I am so sorry that I forgot I posted this. Things have been so crazy. On November 13th, my husband had emergency surgery because his bowel was completely obstructed and was unable to be cleared with conservative measures. Not only did the surgeon take out the area of obstruction but 50% of his small bowel, some large intestine, gallbladder, and omentum. Doctor felt he removed 95% of the cancer. He actually did pretty well after the surgery for the first few days. On November 19th, he was having horrendous pain, and we ended up taking him into the ER. He still had his drains and one of them was draining dark green matter. Turns out he had a bowel leak where he had an anastomosis because the tissue was not very good to begin with (had chemo only 2 weeks prior to the surgery on the 13th). Doctor fixed the leak and my husband has a temporary ileostomy. So we came home from this 2nd surgery. He was so uncomfortable...kept burping all the time. He could not sleep. Long story short, had CT scan which showed that the intestines and stomach were swollen. Ostomy was working (very liquid and green). He has been unable to eat or drink anything due to the multiple obstructions and then the burping and is very malnourished.

Now tonight they did another CT scan. This scan shows the stomach and intestines even more swollen. Our oncologist came in and said radiologist felt now obstruction at jejunum. She feels that his bowels aren't working right (the burping and bringing up bile) even through the ostomy is working. She said this is probably because there is probably still spots of cancer that we are not able to see on his bowels that aren't allowing them to work right. He has so much against him right now...malnourished, 2 big surgeries, metastatic appendix cancer. She offered (after speaking with the surgeon) another surgery to try to unblock the jejunum. She mentioned the use of a G tube to drain bile contents from stomach also. And then the dreaded words that make me want to throw up...."comfort care".

I am so scared. I can't imagine my life without him, not even for one second. I keep hoping and praying that it is something like a kink or twist in the intestine that happened during the 2nd surgery. I just can't think anymore....the pain is unbearable.

[Steph20021]

I don't have any answers but I'm holding you both in my thoughts. I'm sure someone will have an idea.

[jhocno197]

I am so sorry.

[Hapa]

My DH had surgery for bowel blockage in May 2014. 3 days after surgery he began leaking. It's all a long story. He has been living on TPN (off & on) since May 2014. If you would like more info feel free to PM me. At least with TPN your DH could get proper nutrition.

[Scaredoutofmind]

My DH had same issue. He just got a g tube last Friday. Feels immediate relief. They also gave him a picc line in arm for TPN nutrition. Both are temporary until nodules shrink.