Got firm diagnosis, has anyone had similar diagnosis?

Skiffin16 said:

PEG
Hi Lynette,

I was generously nourished also and the feeding tube was mentioned in my initial treatment plan. But only as a resort to not being able to take in any calories. That option was always out there and on the table.

But unlike many here, I didn't have a PEG inserted as the medical professionals on my team didn't feel it was necessary. I lost maybe a total of 40 or 45# during the entire process.

I'm 6' and started at 275# so I went down to about 235#. At the worse there was a period of about 4 weeks into the concurrent chemo/radiation and lasting until 3 - 4 weeks posts rads that I didn't take much in. I mainly survived off of Ensure Plus, water and a few soft foods like the DelMonte jarred peaches, cream of wheat, mac-n-cheese.

My doctors were continually monitoring me and my weight and at no time did they feel that I was in jeaporady of losing too much weight, LOL....so for once it was a good thing to be a little heavy.

The Ensure Plus has a bout 350 calories per can if I remember correctly. So I mainly used those several times a day as my main source of calorie intake. I liked the Strawberry (they come in several flavors), but I could barely taste anything at the time anyways. I mean during that time even water tasted like sweat, kinda salty saline taste.

Anyways, I'm almost a year out, everything is looking good, and I have back around 80% or so of my taste and have regained nearly the same for saliva, other than night which is a bit dry still....

John

One heck of a weight loss plan
Well this is certainly not the weight loss diet that Roger wanted, but thankfully he also has a fair amount he can spare. He is also 6.1 and about 245 lbs, so he is truly hoping to avoid the PEG. I read him your's as well as all the other responses here and it has given him much needed encouragement after todays fiasco. I will be hitting the phones again tomorrow, trying to locate an Oral surgeon with a heart and not just pockets to fill with cash.

Lyn

ratface said:

Totally deplorable and unacceaptable
Lynette right now isn't the time to get litigious but you should certainly contemplate it after you get to a stable point in the treatment. What happened 3 1/2 years ago shouldn't happen. They were clearly wrong and you have documentation. I am not an advocate of sueing doctors but my God they were wrong and risked his life without hesitation. This cancer although survivable results in fewer than 30% of us returning to work because there are complications and issues years after treatment. Right now you have your priorities but it's burning me up that they did that. Don't let them get away with it less they do it to another unsuspecting poor **** among us. I get copies of everything and almost always get little resistance.

Deplorable and unacceptable, YES
Hi Ratface, (How did you come up with a name like that ) :-)

You are right that something needs to be done and yes, I have the documentation to produce and pursue when we get on a more even keel here. What is even worse, is that he mentions it in an October 2006 report and then in a November 2006 follow up report, he states that he did an oral cavity inspection and everything "including the tonge was normal! I think he must have been taking drugs he was supposed to prescribe for someone else !!!

We went back to our previous County and spent the day collecting Roger's records from the ENT, Primary care, Heart, hospital and lab, so there is no way that he had time to misplace or otherwise alter any documents. I am sure that he is unaware that we have all the pieces to the puzzle.

I am not one to sue either, but him and the primary Dr put my husbands life in danger and that warrants the wrath of an angry wife!!!

Pumakitty said:

Hi
Hi,

This sounds like the diagnosis my dad got in March. He is almost half way through is treatment and doing great He is eating better now then he did before because of the pain in his tongue (that pain is gone and he now has side effects from rads). He is also drinking the ensure and the boost for extra nutrtion. It tool about 2 months for him to get started. I wish you both all the best and please read all you can on this site it has been a blessing for our family.

Hi Pumakitty
I am going to stock up on "Boost and "ensure" when I see it on sale. It is unbelievable that they cost so much. I will say a prayer for your dad, as well as all the others that frequent this website. Thank you for writng and for your kind thoughts,
Lynette

Skiffin16 said:

Ensure
Sometimes you can also find $2.00 OFF coupons, but usually the Publix brand was still always less expensive.

I preferred the Strawberry, it had a hint of taste for me, but it was mainly just for calorie intake anyways. I liked the DelMonte Jarred Peaches at Publix also, not sure why but I ate a lot of those, and canned spinach, LOL....

JG

Peaches n spinach in the same sentence, YUK :-)
Good morning,

Roger loves peaches and does eat spinach from time to time. He will be having all of his teeth out tomorrow, and is worried that he won't be able to eat anything. I told him that his tongue can pulverize a lot of those kind of foods, and he will be surprised at what he will be able to mangle into a liquid type food, when he wants to eat it bad enough. I can understand the strawberry being the strongest of the flavors as it has the tartness that vanilla and chocolate don't.

Lyn