My parents live in NY and I in Chicago. He is being treated at Strong Memorial Hospital (Rochester, NY) and his physicians are Dr. Tijani (spelling?), and Dr. Peters. (FYI- my father is 74 years old, until this has been in good health, other than the fact that he is a lifetime smoker)
The past several months have been a roller coaster. My dad has been through countless tests, scans, scopes, etc. He was initially diagnosed at the end of November of last year. It took time to determine that he was Stage 4 with some EC that had spread to his lungs. He went through a series of radiation and chemo where he went daily for radiation and weekly for Chemo. He did this for 6 weeks or so. He was unable to get his last chemo session in because his platelet count dropped too low. This brings us to the beginning of last April. Once the chemo and radiation was completed they had to wait a certain amount of time before new scans could be done. When the new scans came back the outlook was very positive. The cancer in his lung was gone and the scope came back negative. At this point he was doing very well. He even came to Chicago to be with us for my son's First Communion in April. He then traveled to Florida to visit with my brother in May. He seemed to finally be able to eat again. Things were looking up.
My family visited my parents in NY for the first week of July. I saw a notable difference in my dad during this visit. I could tell that he continued to lose weight, and he had a very difficult time swallowing. He would often run for the bathroom during meals and all that would come up would be stomach acid. My parents had said that the doctor had encouraged a stint in the event that the swallowing difficulty increased. My husband and I encouraged him to see if he could get that stint. It seemed like a good idea. It was painful to see my dad struggle so much. The following week my dad spoke to his physician and he had a stint placed shortly thereafter. Life has become increasingly more difficult since. Apparently, the cancer is at the junction of the stomach and esophagus. The stint was placed in a way to hold the esophagus open and to open the path to the stomach. This sounds good in theory, but now anything my dad eats causes a terrible burning sensation from his stomach all the way up to the base of his throat. There is no longer a valve available to close the stomach acid from coming up his esophagus. The food will now go down (sometimes), but he doesn't want to eat for fear of the repercussions. At other times anything that he tries to eat gets "stuck". My dad always weighed in the ballpark of 200 lbs. He has now reached 144 lbs. The doctor fears that the tumor has grown and that is why he is having the increased difficulty. Apparently now, with the stint they usual PET and CAT scans will not show the tumor growth. It can only be done with a scope. This was not made clear to them before the stint was placed, because perhaps those scans should have been done before the placement. My dad has received no "official" treatment since that initial round of chemo and radiation that ended last March. Finally, his platelets are at an acceptable level, but now the doctor fears that he would not be able to tolerate chemo because he is too weak (based on his weight). My parents have asked if the stint could be removed to alleviate the reflux problem. The physician that they met with today said that he would have to think about that over the weekend. They are strongly encouraging a feeding tube. It seems that he has 2 choices: 1) get a feeding tube, increase his body weight, and start a round of chemo with hope that things will improve, or 2) do not accept treatment. Neither alternative seems very positive. Not to mention that it seems that no further decision will be made until their next appointment in 2 weeks! UGH!
Another issue that has come up is with a supplement. My dad has been drinking Mighty Shakes Plus (Made by Hormel). They are not readily available. My mom, works at a nursing home and was purchasing them at cost from the kitchen there. She was just told that they can no longer sell them to her. Does anyone know where these can be purchased? Does anyone have a suggestion for a substitution?
Does anyone have a suggestion for a medication that would help with the reflux issue that my dad is experiencing? I believe that he has been on Previcid and Paxil- neither of which seem to be helping much
My dad has also been put THC to stimulate his appetite, he's on an antidepressant, and now he is on a pain killer.
Has anyone heard of removing a stint once it is placed? My husband brought up a concern that the tumor has probably grown around it and that moving it may be unsafe. Does anyone have thoughts on this?
Another unusual thing is that for my dad the reflux is worst during the day when he is up and around. At night, when lying down it seems to get better. Is that normal?
It is really bothering me that my dad has not received more treatment. It feels like so much time goes by and we just wait and wait for another appointment, where very little is learned. Is it common to wait so long between rounds of treatment? Is it true that the only thing that can increase a platelet level is time?
Based on your experiences does this scenario offer a lot of hope still? At the beginning of this all, surgery was the big hope. Now that has pretty much been removed as an option. He is really suffering. I hate to see this! I live so far away and have 3 young children. I am unable to be there as much as I'd like, and all of my information is 3rd hand. I feel for my mom, who is trying to be upbeat, positive, and supportive, but she is also really struggling with the whole situation. Is it better for him to get the feeding tube, try to gain weight, and attempt more chemo to try to "control" the cancer, or is it better to attempt to stay comfortable for as long as possible? I once thought that the answer to that question was obvious... now I'm not so sure. The final question I have is one that physicians do not seem to give an answer to anymore.... can anyone, based on their experience, guess on how long my dad has to live? I know
there are so many variables to consider, but things just feel like they are bad...
Any words of advice or suggestions would be so very much appreciated,