Husband’s Case

My husband received a port and it has been incredibly helpful…both for regular chemotherapy and even with the clinical trials where they tend to do a lot of blood draws monitoring the I medication as it is dispersed into his body. It was put in before he started chemo and was an easy enough procedure.

We met with my husbands support team yesterday. I’ve been concerned because he has grown so weak and short of breath in the last month. His abdomen has also become very bloated. They told us yesterday that he may have fluid leaking into his abdominal region. He will be getting scans as I mentioned on the 21st. The doctor said that if the scans indicate the fluid is there, they will likely drain it and watch to see if and how quickly it refills and in some cases a catheter is inserted to keep the fluid from collecting. Excess fluid would definitely be compressing everything and contributing to his shortness of breath, constipation…etc. I am hoping that it is the case and that draining it will provide some welcome relief. Anyone else had experience with this?

Thanks Darla…both Robert and I graduated from UT Austin and our older daughter will start there this Fall. Small world!

With clinical trials we are at MD Anderson pretty much weekly to check in. Dr. Janku called it turning downhill. ( his English!) which indicated that at best current drug would at best slow the growth. He does keep Robert in mind for all studies because he tolerates treatment well and he is a model patient with showing up for appointments and keeping pill diaries. This downturn has been pretty disheartening for Robert and I am trying to raise his spirits. Right now he hardly wants to get out of bed. He has always been a very active man and when you get winded going from one end of house to the other it frustrates him. He sleeps a lot because then he isn’t in pain or feeling the nausea.

We go back to Houston on the 8th for what I refer to as the Guinea pig tests. He has blood draw and then takes pill in front of them and they observe him for a few hours. On the 21st they will do full scans and labs and determine whether he continues or they change course. Prayers for a clear direction at that point!

Thanks for the responses to me. I’m not very skilled in the art of discussion boards. Can’t even figure out how to post an introduction.. Only responses! The study that My husband is currently participating in is a pill form of targeted chemo called IG 881. He has done two other very similar ones. Essentially they have just slowed the growth of tumors. He was in great physical shape when first diagnosed and he has always tolerated treatment well. This last couple of months he has become very winded and has no energy so I anticipate that when he goes back to MD Anderson for scans on July 21 they will find cancer is progressing. They may keep him on drug or take him off to try another treatment (although the dr. Doesn’t really have one in mind). I read here about other treatments that they haven’t even mentioned to him. They have not tried any kind of radiation therapies at all. Of course when you are at MD Anderson, you assume they are doing best and latest of what is available and you take their recommendations. I am wondering at this point with his physical condition declining if we need to look into palliative care/home hospice care. We are blessed that I was able to retire from teaching in June so that I can be home with him. I am just looking ahead and wanting to be ready to provide what he needs.

Dear Rachael, welcome to our remarkable family and so elated to hear the good news about your husband! We DO have MIRACLES on our site and your husband is one of them. Your post is important as it gives everyone so much hope. I would really like all to see what you wrote and wondered if you would mind copying it and reposting it under Introductions so all the world can see! There is never too much hope! Please keep us updated on your husband’s progress as we truly care. Prayers and cyber hugs sailing out to you and your family.

Hi googily..I am brand new to the group(first post!)..but I wanted to reply because I was in similar shoes 20 months ago. My husband’s doctors identified a cancerous lesion on his liver but scans showed no other traces of cancer so he was scheduled for a liver resection that was expected to take care of the problem. We went into the surgery confident that it would take care of the problem. Unfortunately when they went in, the surgeon found the CC and it was inoperable because of its proximity to major blood sources in liver. This meant that this very painful surgery that was not able to solve the problem now had to heal before he could start any cancer treatment. Because we are in Texas, we are blessed to have MD Anderson, but we had to wait a month from his surgery and diagnosis to get in there. His doctor there told us that 50% of her patients made it a year and 50% did not. And got him started on chemo therapy. That’s how we went into Christmas that year. Happily we have been in the group of her patients that exceeded the year. The one thing that has made the biggest difference for us was that MD Anderson did a genetic screen (even though most insurance doesn’t cover it) to identify mutations. This allowed them to move my husband into clinical trials of targeted therapies.

I know how overwhelmed you must be feeling. The only thing that has kept me afloat in this battle has been my faith in God. I turned everything over to Him. We have had so much support from family and friends. It has been and continues to be a life altering journey. Use resources like this discussion board to help find others. Take care of yourself so you can take care of him. i will be praying for you and everyone else on this site. Hang in there!