hopeful

Just thought I would post an update. My husband is now on Hospice care. Our last visit with our oncologist was a difficult one. Scans showed that the massive tumor in and on his liver grew, also the mets in lungs and lymph nodes grew. Two very strong chemo regimens over a 6 month time frame has not accomplished what we were hoping for. His ascites has become a problem so he had to get pleurX catheter which has helped. He has it drained about every other day. Since discontinuing chemo in August his quality of life has improved. He is still skeletal looking since he has no muscle mass left, but his appetite has improved and he can actually eat a little bit more than before. We know he won’t be getting any muscle mass back because the cancer is so aggressive and using all of his nutrients to feed itself, but at least he is able to enjoy his food. We have been enjoying visits with family and friends and trying to live each day like we’re in vacation! Someone once said “having a positive outlook may not add years to your life, but it surely will add life to your years!” We are trying to enjoy each day, for we know that he could turn the corner and decline very quickly. We were told he has about two months left.

Thank you, Karen for the informative links. I read through them and yes, while they are sensitive in nature, it helped me to understand more of my husbands condition.

We had a consultation today with our oncologist and he canceled today’s chemo treatment. He talked to us about the cachexia and what is happening. He ordered paracentisis for tomorrow, another scan to be scheduled after Labor Day and then another consultation on sept. 12.

It almost sounds like our oncologist is leaning toward no more treatment but won’t make that decision until after scan results. The Y90 procedure is now off the table because of the progression of the cachexia. My husband is literally skin and bones except for his huge stomach. He eats almost nothing, sleeps a lot, is having double vision and some occasional confusion.

We are trying to stay positive. We’ll be having lots of visits with family and try to enjoy each day that is given to us.
I’m thankful for this support group!!

Hopeful

Hello to everyone. It’s been awhile since posting an update, partly because it’s been a crazy hectic month. My husband has been on the Folfox/5FU since beginning of May. Had a scan at end of June which showed no shrinkage of tumors. We are continuing with the same chemo regimen through August with another scan after that. He has lost 22 more pounds since May. We are learning more about cancer cachexia which is the main reason for his weight loss, not only weight loss but almost all his muscle mass. Extreme fatigue is also a constant. He sleeps a lot and eats very little. From what I’ve been reading about cachexia it does not sound very encouraging. Any helpful hints or info would be greatly appreciated. We’re ready for the hard facts, I’m thinking this is the beginning of the end stages, especially since this is the first time that our oncologist seemed very somber. We need to know reality since we have much business to attend to. We’re trying to keep a positive outlook but………it’s hard.

Hopeful

Hi everyone. This is Hopeful (Linda) posting. Today my husband goes for routine lab work. Monday he goes for scan. He’s made up his mind that if the scan shows no improvement or shrinkage of his huge tumor then he wants to quit chemo. His quality of life is , well, let’s just say there is no good quality at all. He can hardly eat anything, continues to lose weight, sleeps a lot and is nauseous almost constantly. If you read my June 15 post I talked about the type of chemo he is on right now. I want to ask about immunotherapy…..if that might be an option for him. And we are still hoping for the Y90. I hope the oncologist will be totally honest with us about what he will see in the upcoming scan. If Y90 would not help at this point, then don’t give us false hope.
We’ll see how his labs come back today and what the scan results will be next week. While we wait are there any thoughts from anyone about immunotherapy options?
Would appreciate any input…..
Thank you,
Remaining hopeful!

It’s been some time since I’ve posted an update. Today my husband completed round 4 of the Folfox/5-FU regimen. This has been a rough regimen. Lots of nausea and each round leaves him weaker and less able to bounce back. He’s lost a lot of weight, no food tastes good, not hungry, sleeps a lot. Our oncologist wanted to complete 6 rounds and then have a scan, but decided to have a scan on June 26, to see if this chemo is helping or not. If we find that this regimen isn’t helping then it will count as a fail and that makes 2 failed chemo attempts which qualifies us for clinical trials, if there’s one available. My husbands abdomen seems to be swelling more, he might have to have it drained if it gets to be much worse. I want to get a second opinion about our treatment. Husband is not so willing to go that route……it takes time, energy, and action that he just isn’t up to right now. We are hoping for a good scan so they may be able to do the Y90if the tumor had shrunk enough. I always questioned the team of doctors decision to skip the Y90 and go straight to chemo when they found out that the tumor had metastasized to lungs and lymph nodes. They said the Y90 only treats the tumor but the chemo treats the everything. However, after 3 months of gem/cis they found that the bile duct tumor actually grew as well as the other tumors, I would have thought that they would have attacked the monster tumor in the liver with the Y90, and then go back to chemo for the rest of the tumors. Getting a little frantic knowing we are on borrowed time, and I see the wasting away of a once healthy , hard working man. It’s hard to watch…..thanks for letting me rant.
Hopeful

Marion, thank you for the info. We’ll see if this is a possibility for us.

I don’t know of any study name or ID number, or if his tissue sample has been analyzed for molecular alterations. We’ve just I started talking about this with the oncologist and reps for the clinical trials. These are questions that we can ask about. Thank you!

We were told that in order to qualify for clinical trials we would have to have two failed treatment plans. We have one, and he strarted his new chemo regimen on Tuesday. They want to do 6 treatments. Treating every other week which brings us to beginning July. They will then do another scan to see if there was progress or failure. There’s so much waiting time! We haven’t sought out a second opinion because it’s not just one doctor involved, but a team of doctors at St. Lukes in Milwaukee. We go in tomorrow to get him unhooked from the chemo pump. This chemo treatment plan seems to really put him down. He sleeps most of the time.
Thank you for any input you can give. It’s much appreciated!