July 15, 2016 at 5:15 am #92632
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?July 12, 2016 at 11:31 pm #92631
googily……I hope for others to chime in on the port question, but know that it has been discussed frequently.
MarionJuly 12, 2016 at 11:05 pm #92630
No port discussed, but we are still doing a little bit of coordinating about where the chemo will be done. I asked about it in general, but will ask again when we hit the final location. Is a port preferred?July 12, 2016 at 9:28 pm #92601
googily……At last you have conclusive answers from which a clinical treatment plan has emerged and the molecular test will provide additional information. From what I have learned the IDH-1 mutation appear in 40% of all intrahepatic patients and we have seen some excellent responses to immunotherapy targeted drugs.
Regarding gemcitabine and cisplatin (first line of treatment) has a port been discussed?
MarionJuly 12, 2016 at 6:12 pm #92606
Just wanted to update (I’m the one who started this thread). My husband has now been seen by the Hopkins Liver Tumor Team, who confirmed the diagnosis of intrahepatic CC, with numerous metastases in the liver and local lymph nodes, making surgery not an option right now.
We were visited by four different doctors, and there was agreement between the team to start Bill on gem/cis, then after three rounds or so give him two Y90 treatments. The interventional radiologist said that the main tumor (about 8 cm) is highly vascular, so he feels good about the “road” for the spheres. The surgeon did say that if the chemo and Y90 response is good, he and the team would evaluate again whether surgery could be possible.
The oncologist also will be giving us a referral for genomic testing, and specifically talked about the IDH1 mutation as one to be looking for.
So, thanks to having buried myself in this message board for the past few weeks, these were the things I was hoping to hear (knowing that we were probably well past the hope of them coming in and saying it was resectable), so now we will get the chemo started and see what comes.
We may still get some second opinions (though right now we are worn out just from the waiting), but won’t let that delay starting the chemo.July 5, 2016 at 8:10 pm #92629darlaParticipant
Small world indeed. I’m not positive, but think he will be teaching Poly Sci.July 5, 2016 at 5:10 am #92628
Thanks Darla…both Robert and I graduated from UT Austin and our older daughter will start there this Fall. Small world!July 4, 2016 at 12:30 am #92627darlaParticipant
Thanks for joining us and for your positive post. So happy to hear of your husbands success with his treatment. It gives hope to others here.
Just an interesting coincidence. My nephew and his family just completed their move from Silver Spring. MD to Austin. Arrived there a few hours ago. He was offered a job as a professor at UT Austin. I’m sure he and his family will be very happy there.
Hoping to hear more positive news from you in the future.
Take care. My best wishes to you and your husband.
DarlaJuly 3, 2016 at 7:51 pm #92626
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!July 3, 2016 at 6:04 pm #92625
You are doing just fine with this board, dear wife4life. I believe the clinical trial mentioned is targeting the BRAF mutation.
As you know, only surgery can provide a cure; presently all other treatment options are palliative in nature; there are of course, the exceptional responders for which researchers are searching for answers. Given the current climate of cancer research, I believe that this cancer resembles that of a chronic disease. Based on the numerous postings, patients are able to benefit from further treatments without impeding too much on their overall quality of life.
Have you reported to the physician your husband’s present health condition? It’s important to know that communicating this type of information is important for whenever it may occur.
MarionJuly 3, 2016 at 5:15 pm #92624
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.July 3, 2016 at 4:51 pm #92623
wife4life…hello and thank you for sharing your journey while joining in. The purpose of this board is to connect all touched by this cancer wherever in the world they may reside. In doing so, we are able to eliminate the feeling of isolation inherent to to a rare cancer diagnosis. You are a perfect example of the power of personal interaction and the value it brings to all.
If I may ask: which research study is your husband participating in?
It is thrilling to know of his success.
MarionJuly 3, 2016 at 4:42 pm #92622lainyParticipant
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.July 3, 2016 at 4:14 pm #92621
Hi wife4life, thanks for your post and your story. It helped me a lot this morning–your strength shows through! I hope to see more posts and updates from you!July 3, 2016 at 2:51 pm #92620
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!
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