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#47409 01-09-2007 03:38 AM
Joined: Oct 2006
Posts: 248
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Posts: 248
Pat, Minnie, and Cathy,
First let me say hello and hope all is well today. I also had XRT and everyones side effects that a typical survivor goes thru I have and they have not improved. That is O.K. with me because that is the price we unfortunately pay for survival. I was wondering if rad dr.s today give choices to newly dx. patients or do they just recommend tx. regimen and move forward. Or has IMRT proven to keep pace or increase long term survival. In a self comforting way I tell myself that all the lousy side effects we have long after tx.reminds me that radiation is a very powerful tool to DESTROY cancer cells. If I ever woke up and saw hair growing on my face where it used to I think it would scare me more. I think it is wonderful that we have choices today and Pat is right when she says 20 yrs. ago we would not have as many weopons at our disposal and Cathy and Minnea are walking and talking proof that QOL can be achieved regardless of tx. regimen. Sharing stories is one way of helping those behind us make difficult decisions and to raise awareness for a Cancr who's death rate is much to high.


Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
#47410 01-10-2007 03:52 AM
Joined: Sep 2006
Posts: 8,311
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IMRT like XRT is just a tool in the fight against cancer. Now IMPT (Intensity Modulated Proton Therepy) is being used by a few Tx centers which may be the next tool available in the cancer arsenal. I went with IMRT because my RO recommended it and he has written books on IMRT and is considered one of the country's leading authorities. Moffitt was located 40 miles one way from my home and I could have had IMRT 5 miles away but decided to go to the most knowledgeable source.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#47411 01-14-2007 12:02 PM
Joined: Jan 2006
Posts: 107
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Posts: 107
Hello Bonnie,
I just want sound off and reiterate what my fine board members have already stated. This is very doable. January 11 I had my one year anniversary. Within the past year I had a modified neck dissection, IMRT radiation x33 plus 3 rounds of chemo, a peg feeding tube for 4 months , I even had 39 HBO treatments. Simply stated Bonnie I put all 50 lbs that I lost back on, I was so worried about taste and swallowing, for the most part taste is back to normal, somethings just do not taste the same , especially sweets but I can do without those. I am always being told I am lookin' great these days people don't believe that I went through all this just a short year ago.Bonnie this will not be a picnic for your daughter but she can do this. With support of the likes of a mom like you she will do this easy. Hang in there and know that we are all here for you to lean on when needed, there are some awesome, strong, wise and humble people here for you .
Lenny

#47412 01-14-2007 02:04 PM
Joined: Nov 2002
Posts: 3,552
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Bonnie,
I'm 4 years out, had IMRT and have all of my taste and most salivary function back. It took over 18 months for the salivary function to fully return. My sweet tooth is just fine and eating is normal, no trismus either. But it was no walk in the park during and immediately after Tx but you'll get through it one day at a time. For me, it was my only Tx (with ct). I also kept all of my teeth and still have all of them.

There may be some permanent side effects from the radiation. About 2 years post Tx I started having regular muscle spasms from the radiation damage to the neck muscle. Not really a big deal - Valium and Codiene fix it up just fine when I need it, which is not all that often.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#47413 01-14-2007 03:50 PM
Joined: Nov 2005
Posts: 1,128
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I'm about one year out of XRT, have some saliva and much of my taste back -- I had Amifostine for about half of my XRTs until I became allergic to it.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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