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Good1 #95173 05-09-2009 06:20 PM
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I had Amifostine for about half my treatments but sadly developed an allergic reaction to it, so they stopped.

While I was taking it, I had to show up early for a weigh-in (The nurses were adamant about not losing weight while taking it, plus drinking lots of water before coming in), then have the shot and wait around for it to work before getting nuked.

After my reaction, I just came in and was nuked.


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.
Joined: Jul 2008
Posts: 507
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Posts: 507
Sandy,
I am sure your doctor doesn't want to over promise, but I doubt you will permanently lose a salivary gland - that would be very unusual for BOT treatment on Tomo.

As the doctor said, "no guarantees", but I was treated as if my primary was BOT (along with other possibilities).

I had several levels of nodes on both sides nuked from 50 to 70gy and my saliva is usually just fine and all my glands are pumping.

My bottom right salivary gland on the side of my Selective Neck Dissection is still somewhat swollen. It took the most hits, and my monthly ENT tells me "it is not a very happy camper, but it is dealing with the situation, working pretty well and getting over it".

Most Tomo patients get back good salivary function quite quickly. Mine was at its worst the month following Tx. My salivary flow tested in the normal range at my last month CCC visit.

I still have occasional but short dry mouth spells (an hour or less) and have noticeable dry mouth at night.

Last month everything in my mouth had healed to the point that both my monthly ENT and quarterly RO said if they didn't know, they would never suspect I had ever had radiation.

Also last month the lymph-edema went down by about 40% and is no longer noticeable.

I was told at the CCC that everything looks right on track for "perfect Tomo".

Now lets just hope my up coming PET results will be as good.

Hope for the best smile



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

Pete D #95186 05-10-2009 06:14 AM
Joined: Apr 2009
Posts: 128
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Pete D,

What was your reaction, and how is your saliva now?

WFC

Last edited by wfc; 05-10-2009 06:16 AM.

Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
DonB #95196 05-10-2009 02:43 PM
Joined: Jan 2009
Posts: 253
Gold Member (200+ posts)
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Posts: 253
Don:
Thank you for all your help. Your email gives me great comfort.
To use a kids' term, I was kinda "freaking out." This will help be stay positive through this mess!!!

Take Care
Sandy


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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My allergic reaction was a skin rash on my sides and back (They inspected me every time after my shots just before my nuking session, which were conventional XRT, not IMRT). Two years out, some of my saliva was coming back, but nothing like the original, but now I can't tell because I have so many secretions still happening from my most recent surgery and in fact am taking medicine to dry me out a bit.


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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