I heard back from U of M today. They got the film and reports from MDA this morning and the tumor board met this afternoon. They said I should get some answer by tommorow. Lets hope thay have a good plan for me.

I am a bit worried that AMD "punted" and sent a highly difficult case back off to michigan. I know this is not their MO just get those "bad thoughts" come through every once in a while.

Lets hope fot the best tommorow

Kelly,
I am fairly sure they sensed you were comfortable at Michigan, they thought you could get great care there. My RO there (at MDA) would never give me any odds, which I was not asking for, just a general idea of what he thought. Smart man.
After my first check up, my ENT oncologist volunteered that he thought I would be "fine", despite what any odds you might find in this study or that, but never did he say anything before this point.
The thing is even if the odds are not in your favor, SOMEONE has to survive, and it might as well be you, Kelly! Again, stay strong.
Best,
Anne

U of M called back today and let me know they want me in on Friday for a consult. I will be going to the Radiation Oncology department and the doctor I spoke to said they are planning daily radiation plus chemo.

Having been radiated before I know this is going to be a tricky proposition but I think I am in the best of hands so I'll just have to wait and see what the details of this approach is on Friday.

I hope the technology has moved forward enough with re-radiating tumor areas that I won't have to much additional damage done to my neck and throat. I'll check in with Charm on this as he may know something about the latest advances.

I'll try and post an update after the meeting on Friday.

Best to all and thanks again for all the good wishes.

Hi Kelly,

I was thinking about you today. Hope your surgery went well and wish you a speedy recovery. Keep us updated when you are able to.

Best Regards,
Chetan

You are in my thoughts today Kelly.
Praying and hoping you make a full recovery.

Sending you lot of strength and positive energy.

If you do not subscribe to the free OCF news feed, this came up this week about re radiation. Knowledge is power.

http://oralcancernews.org/wp/new-guidelines-for-reirradiation-of-head-and-neck-cancer/

Brian

You are Johnny on the spot. Kelly did PM me but my studies were old so all I could share was my general sense that re-radiation was becoming more common plus the ancedotal evidence that it has worked for me so far. My research was limited in that the newest full articles were all behind "pay walls" of professional organizations. Yet a little digging into the links in the OCF news article did let me find a full PDF version of a 2010 American College of Radiology: Appropriateness Criteria paper. I love the OCF news feed

Kelly
This may be a case of TMI but here is the link that I found thru the OCF news feed article.
ACR reirradiation criteria
The tough part is figuring out how many GY. I got 5 GY a day for one week my second time around (compared to first time of about 2GY a day for 40 visits)
Charm
Keep the Faith

Thanks Brian,

I subscribe to the RSS news feed from OCF and it is at the top of my Google home page so I did see the article.
Charm,
Thanks for the new report. It gives me some hope as it does get into the issue of recurrence not at primary sites. My primary (soft palet) is fine. The recurrence is in a Lymph node below that site and is most likely due to one or two immature cells that existed there and did not react to the lower dosage I got to my lymph nodes. It may also be the result of the initial targeting of the radiation and a spot was missed.
I was able to get a CD from the hospital that did my first round of IMRT that covers all the ISODOSE lines that I was treated with and this has been forwarded to U of M. This will give them a precise picture of all the areas in my head and neck in regard to how much each area received in gy�s. Hopefully this may help solve the mystery of why I got a recurrence and will definitely help U of M in the new targeting as they will have a precise knowledge of how much radiation was received throughout my head and neck.

Just an update,

U of M said I will be doing chemo weekly (carboplatin + Taxol) as I have a prior hearing problem. They are planning 7 weeks of radiation with a full 70 gy to the tumor. They have some new targeting data that they feel will minimize radiation damage, but as the tumor is wrapped around my carotid we have no choice. Doctor gave me 33% - 50% chance of long term survival. Said worst problem they have had in last 82 cases was �carotid blow-out� on two occasions.
Of course that pretty much kills you where you stand. Funny thing is; I would rather that and a quick end against a third occurrence, hospice and a slow painful end.

So..let me get this right...2 out of 82 had a cartoid blowout so that is like......2.4% chance???? I'll take those odds - I'm not sure my odds of safely taking a 500 mile car trip are that good. Glad to hear they are progressing with an aggressive treatment plan.

Please do not dwell on their numbers. The only number that matters is what happens to you. My Surgeon (a very wise man) told me "Either you will die from this cancer.......... or .......you will die from something else". Taken in THAT light all oral cancer patients are 50/50.

Enjoy each day. That is all any of us have.

You have a rigorous treatment program planned, but try to find something special in each and every day.

Many hugs

Donna