annes
Forum Replies Created
-
Posts
-
Hello Everyone,
It has been a long couple of months,but I wanted to give you all an update on Mike, my husband. Shortly after my last post, his tumor invaded his stomach and blocked it off totally. He went into the hospital for 2 weeks,and ended up with a J-G Tube for feeding. He has lost a lot of weight,and we have been trying to get that resolved. Other than the feeding tube(which is big) he hasn’t had any pain at all the last couple of months.He was almost 6 wks without a treatment as we got him stable with the feeding tube.We went back and had treatment 4,and the dr wanted a CAT scan to see if the immunotherapy was working-The good news is that it is!!! His tumor has shrunk 25% after 4 treatments. They hope to see 30% reduction after 6 treatments,so we are on our way. I expect any day his stomach will reopen,and he will be able to eat again.
This trial Mike is on has been doing great for people with MSI tumors(Micro Sattelite Instability). They actually published the initial results in the New England Journal of Medicine, the results are so promising.
I look forward to the day when Mike can say he is NED, and he is able to eat food again. He is hoping to go back to work next Friday-after being off for 12 weeks. We believe this has been a life saving miracle for him!Thank you for sharing your story! I thought you did great, the pictures, and seeing your family and what you went through added to the story. I am so glad you are doing well today! Thank you for your courage in participating in this trial.
Hello again,
As mentioned above it is possible that the Lynch Syndrome genetic mismatch is in part a reason for the fantastic response to the treatment. I did read that there is very encouraging news for MSI tumors(micro satellite instability).The news of the day is that my husband has had no pain medication since last Thursday,and ate his first cheeseburger in 2 months for lunch today! We have figured out that the welts he has on his body were from the Fentanyl patch. He got it when he was in the hospital on March 17th because they could no longer control his pain with the Oxy. The patch worked miracles in terms of pain,but the side effects and withdrawls are terrible.
He had the welts that are going away now,and kept him up at night scratching.The withdrawls after only having the patch for a month have been terrible. Restlessness,anxiety, sleeplessness are just a few.
Other than that, he is feeling great! He is looking forward to his CAT Scan,and going back to work.Believe it or not, he only went on disability 4 weeks ago when the pain was so bad,and he couldn’t eat food. Two hospitalizations in a month to no pain meds,and feeling great!Thank you very much Iowagirl for the warm welcome. I will come back to update you. I know that there are others out there looking for information on immunotherapy. It does seem to be working for him, we believe it is even though the dr has cautioned us to wait for the CAT scan. The fact that my husband went from an obstructed stomach, throwing up and NG tube, to eating 2 eggs this morning,BACON,and toast in under 2 months with no chemo is nothing short of a miracle!
Hello, I saw your post asking for other responses to the clinical trials for Keytruda. My husband is in a Level 2 trial for Keytruda at the University of Pittsburgh. He has cholangiocarcinoma,but what makes him eligible for this trial is that he has Lynch Syndrome,specifically a genetic mismatch in his DNA code.
His results in only 6 weeks are unbelievable! My husband is only 46,and survived pancreatic cancer in 1999, he had a full whipple procedure then. He had been told that his care for Bile Duct cancer would only be palliative.We found this trial,and we believe the drug is working. On February 20th he was hospitalized with a fully obstructed stomach from the tumor. We knew we were starting this trial,so the dr put him on a fully liquid diet and he got out of the hospital without the surgery that all drs were pushing for to divert his stomach.
He started the trial, and has had 3 treatments timed 2 weeks apart. He cannot get a CAT scan until he has been on the trial for 12 weeks. We are fully convinced the trial is working. In the last week he has started eating food again.Real food. If the tumor (the size of a grapefruit) hadn’t shrunk, he would be in the hospital again unable to digest the food. Also, for the first time in literally months, he took off the pain patch he was wearing and has had no pain medication for over 24 hours!
He has periods of intense fatigue,and welts all over his arms and trunks.These welts itch him intensely, and he gets up at night to put non steroid lotion on them every 4 hours. He has had some joint pain, but the itching and fatigue are the worst so far.
We believe that this drug which stimulates your own bodies immune system to fight cancer is a miracle drug. My husband has had no chemo since Feb 4th, no drug treatment other than these 3 infusions! This tumor was aggressively growing,and as I said blocking his stomach.
I am blogging about my husbands trial at http://www.Mooreaboutthis.com if you want to know in more detail about this drug.
