Hi to All....Haven't checked in with you all for some time, but for anyone interested, I thought I would give you the latest scoop so far. As I mentioned some time ago - Johnny had a setback when he broke his ankle back in late June...well, finally the cast is off...but he has P.T. until mid-October to go through yet. As far as his health in relation to the SCC at the base of the tongue, which he is now almost 10 months post radiation treatment, and 7 months post surgery...he seems to be doing pretty well all n' all. He went for his annual 3-month checkup, and the ENT surgeon said that all looks well visually (he put that infamous camera-thingy up his nose again, etc.) and did the usual "poking and prodding". He said everything looked good so far, which is always a good thing to hear! But he did order him to go for some blood work to test for Hypothyroidism, and also a chest x-ray (ABN) - pa & lat. which John is going to have done tomorrow. Does anyone know what the (ABN) stands for on the test for the chest x-ray? And are these standard tests that are done routinely after so many months post-treatment? I do recall the doc mentioning that John would have to wait 5 or 6 months post surgery before getting tested for Hypothyroidism - but when he went to see the doc today, he didn't "ask" for the test or even mention any particular problem - the doc just gave him a paper to take to radiology to have this and the chest x-ray done. Do you think the doc sees something there he didn't mention during the physical exam and wants to check it out first?? The doc asked my husband what kind of things he's been eating - and he said although he manages to eat solids, he still prefers soft-type foods (like baked catfish, soups, etc.) and that other foods are still hard to eat at times w/out choking on them or coughing it up, etc. The doc was adament about him "chewing" or eating solid foods of all varities - sayin that it was crucial to keep the back of the throat from "hardening up" and causing further difficulties down the road. So for the most part - my husband has been managing - but with the eating problems, the hardened throat and with the recent broken ankle injury - things haven't been easy - but thank God things seem to be good as far as the cancer treatment is concerned. Sorry to harp so long on this, but I just thought I'd give the latest. Best wishes to everyone for health now and years to come!

DonnaJean,

I can't answer your questions (with any knowledge)but wanted to say I was thinking of you and Johnny the other day and hoping you were well. It's good to hear from you. Please keep us posted and keep well yourself!!!!

(when I had a doctor visit after radiation and complained of my cold hands I was sent for thyroid tests)

Take care,
Dinah

Thank you Dinah, for your concern. I kind of learned to take things one day at a time..although I must admit, I am easily spooked when things aren't going by the new "norm" as life is for us now. Hopefully, we will get the results of the test back soon. John went to see the radiation oncologist today..and from what he has observed, things look OK so far. This doctor pretty much just wanted to know what the oral surgeon had to say, that John went to see yesterday. So he goes back every 4th month to see this guy...and every 3 months on the surgeon. I really, really dread these things...but I know that it has to be done. Anyways - thanks for listening, and I hope all is OK with you. You had better still be reporting good news on your treatment!

Hi DonnaJean, In my experience these tests are a normal course. My ENT says annual chest x-rays are going to be part of my life. The Thyroid test also is normal and it is good he has ordered that for John. about 1 year post radiation is when Thyroid problems seem to start (if there is going to be one) The test is a simple blood test and I have to do it monthly because it takes a while to adjust the dosage (I am on synthroid now myself). ABN? Could that be abdomen?

Take care and remember the stress before a Dr. visit is smaller than the relief when you hear "everything is fine" :p

DonnaJean, glad to hear that things are going well with John. During scan visit last week radiaton doc also ordered thyroid test, I guess, CBC and Chem 20, after my complaining about still not putting on weight much. Not sure what component of the test shows thyroid activity though.

Can't answer the ABN part, but at our age chest x-rays are an inexpensive way to check a lot of things apparently. Routine test, cancer or not for some docs.

As far as the eating, almost immediatly post-surgery the ent surgeons wanted me to start with the soft food, and harder food by the time I left the hospital. Also talking as much as I could, excersizing the shoulder, etc. They really don't want the scar tissue to start "freezing up" parts of the body. Maybe have Johnny to try smaller bites of harder food, then slowly larger, etc. I still take fairly small bites, mostly because of mouth sores, and it's hard to manipulate large amounts of food in the mouth when you're missing a chunk of tongue.

Bob

Mark and Bob - thanks for the helpful info. I would have to say overall - eating is much better for Johnny now, then it was just a few months ago. But he is way too embarrased to go out to a restaurant and eat in public, since he hates the coughing up/re-swallowing food thing that still happens. When I think back right after his radiation, when the only thing he was managing without too much difficulty was Mrs. Weiss' noodle soup, Rice Krispies cereal and glasses of Ovaltine and Ice cream - he HAS come a long way! He went to see a dermatologist today to see if there's anything he could recommend for the tight/hard neck..and unfortunately he said there was "nothing" out there that would help. He did however, inject him with a steroid to help reduce a puffy scar he has on his chest where the drainage tube was after his neck dissection. He said he can also have that removed by a lasar procedure as well. But thanks for the info. once again - I will pass it on to Johnny. So far he hasn't heard about the test results. Keeping my fingers crossed that everything is OK.

Donnna, Unfortunatly I have a feeling that there isn't much to be done with the tight feeling. I'm still dealing with that myself on the side of the first surgery, and it's been almost a year now. Notice it feels worse when I'm more active, getting more active as going from the state of rest to moving about.

Startig excersizes to start building back upper body muscles, and notice they aggravate it also. I had also asked my doctors about it and I have this sense they don't really know what to do about it also.

Sorry I can't be a big help on this other than to say others have the same issue too.
Bob

I hear ya Bob. I'm getting the same distinct feeling that this is going to be fact-of-life to deal with. Maybe (more) time is all that is needed - I just don't know. I hope for everyone who is dealing with this issue - that things will get better, or at least easier to handle as time goes by. A friend of Johnny's recommended using this stuff called "Mederma" for scars - at least the one that is raised and bumpy - to reduce it. I think I'll give it a try. Too bad there just isn't anything out there for the tight, hardened neck thing. Oh well. Take care and thanks for replying.

Dear Donna Jean,
Have you tried hot packs for the hard neck? I had the neck dissection a month ago and am trying that. Also got some Vitamin E oil for scar....I think it is helping. The puffy areas are going to need something stronger in time.
Praying for you both,
Judy U