Sam had a list of questions for Dr. C:
? Why does my jaw hurt when I chew more solid foods, like chicken? Is that because those muscles haven't been used in a while?
Answer: Sounds right.
? My G.I. tube is beginning to have an odor. Should I see the gastroenterologist?
Answer: I think that's a good idea. Maybe you can work toward replacing the formula with food and come off altogether. That might take a while depending on how much food you can eat by mouth and how much you gain.
Note: Sam gained two (2) pounds in a month's time. He now weighs 134#. At 5'11", 154 would be the lower range of normal weight for his height.
? My fingers and toes feel numb. Is that from the drug I'm taking to help generate saliva or because I have a heart murmur?
Answer: My guess is neither. It's probably a side effect from the Cisplatin chemo drug. You can try going off the saliva med for a few days and see if that changes; but my guess is that it's from the chemo.
Of course, the first thing I looked up is Cisplatin side effects. Yep, that's a side effect for 10-29% of patients who are treated with this drug. It's called neuropathy and it is most likely irreversible. This means more doctor visits. There are some drugs that can be given for neuropathy (Amitriptyline). There might be side effects from that drug that would be a contraindication for Sam's condition (example: dry mouth). That's something we can ask the Primary care doctor.
Sam is now scheduled to see his Primary care doctor in a couple of weeks; the Gastroenterologist in February; the Oncologist in mid-February; the E/N/T at the end of February and possibly a Neuropathologist. The PET/CT scan will be in March with a follow-up doctor visit about a week later. Oh, yes, possibly even a dietitian if he doesn't gain enough weight. Whew. We're gonna be busy.
How can you pray for us?
Wisdom for us and for the medical care givers. It's easy to fall between the cracks when you misdiagnose yourself. It pays to ask questions. We are writing our questions out before each doctor visit.
Pray that Sam will gain weight and be able to come off the formula. Patience and perspective is hard to have when you are tired of being ill, but we are a work-in-progress.
Deanna: This picture is for you.
It's cold here!
7 degrees on Friday. Burr!!!
4 comments:
Hi Maddy:
It's the cisplatin. And the drugs to fight peripheral neuropathy can have lots of crazy side effects. Jim has received mega doses of cisplatin. He's numb, all the way from his toes to his chest. He can't even pick up things or button some cloths because of the numbness.
Roll of thumb that some docs go by is if the numbness is past your second nuckle, you'll always have some numbness. And yet some doctors say that the neuropathy can totally go away. I have no way of knowing, but based on the amount of cisplatin that Sam has received, I would feel encouraged that Sam's neuropathy would 100 percent reverse itself.
You sometimes can't even touch Jim's feet or legs and hands, he's so sensitive. What they suggest is massage, and desensitization. Slowly and deeply massage Sam's hands and feets (in your free time....lol, my new fave joke) and then have Sam take a cloth and rubs his hands, and rubs them across like the corner of a counter, on a rough rug, all kinds of different tectures. It does something with the nerves to help feeling come back more quickly. This is what the pros at the NIH say. I would have e-mailed all of this to you or called, but I just got home, and well, I just ran out of "free time."
I'm so happy to hear of your favorable report. May it continue.
Um, that's from me, Maddy, Gloria. I guess you know that, huh?
I miss you. I miss everybody.
Thanks Gloria. I should have just emailed your instead of going online. You are the new google. I just call you glooria from now on.
Welcome back home. We are still praying for you both every night at about 11 pm.
Love, you.
I am happy the news is pretty good. I will keep praying. It does seem a little rude that Sam would get the neuropathy, but then that does seem to be the waay things go often. It sounds pretty good if Sam could get of the gi tube. I am sure it seems like it has been forever but you are headed in the right direction. I always think a year or two is a long time but Moses always got 40 year chunks of time. We were studying some of Einsteins theory of relativity in my class and time can theoretically slow down or stop while going on as we know it in another place. Kind of sounds like God huh. No shock there. Phil and I are going to look for a good seafood soup. Do you like seafood? If we find a good one we will try it out on you two. Maybe it will be as good as the minestrone:) May God bless your day.
Nancy
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