Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Sandy177 #141660 10-17-2011 03:29 PM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #141666 10-17-2011 06:03 PM
Joined: Dec 2010
Posts: 291
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 291
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


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
AnneO #141681 10-18-2011 09:03 AM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #141705 10-18-2011 09:27 PM
Joined: May 2011
Posts: 62
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: May 2011
Posts: 62
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


Chetan
SCC, lateral tongue, age 53, Tongue resection & neck dissection 5/6/11; T1N2BM0, RTX (35 sessions starting 6/8/11)/chemo (3x starting 6/10/11) Last cisplatin 7/22. RTX complete 7/27. PEG in 6/9/11, out 8/31/11
Sandy177 #141751 10-19-2011 08:01 PM
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Feb 2007
Posts: 790
You are in my thoughts today Kelly.
Praying and hoping you make a full recovery.

Sending you lot of strength and positive energy.


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #141752 10-19-2011 09:46 PM
Joined: Mar 2002
Posts: 4,826
Likes: 19
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,826
Likes: 19
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, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #141766 10-20-2011 06:41 AM
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #141772 10-20-2011 09:08 AM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #142176 10-28-2011 11:28 AM
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
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.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #142179 10-28-2011 01:09 PM
Joined: Sep 2006
Posts: 1,338
"OCF Canuck"
Patient Advocate (1000+ posts)
Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,338
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


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
Page 2 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,826
Newest Members
Gilliland23, mricheryl, Pamj63, Sally_Canada, Al Z
12,897 Registered Users
Forum Statistics
Forums23
Topics18,044
Posts196,287
Members12,898
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5