 
#46002 09-26-2005 12:45 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Good luck tomorrow Michael (last one, eh?)!! YAY YAY YAY!!
From our end, Barry is still waiting -- today went down and pieces of the tomo machine were all over the floor. The engineer gave me a short "tour" of the innards of the beast (*very* complicated) and showed me the little piece of metal that sent the whole thing down (sort of a rachet-like gear) -- found out why it wasn't fixed, the guy with the equipment needed to align the beam was in Houston Friday and got captured by Hurricane Rita, and hadn't been able to get to Baltimore until today. Engineer said they'd work all night to get it "up" -- we shall see...
Anyway, you have a well-deserved light at the end of the tunnel -- best wishes to you and Seth and the crew for seeing it through...
Gail and Barry
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46003 09-27-2005 08:03 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Sorry about the technical issues so close to the end :-)
I explored Tomo enthusiastically(sp?) early on you may recall, and am anxious to hear more from others about it over time.
Give Barry a thumbs up from me, hard to believe we made it to the end of the bumpy radiation road.
Speaking of Houston, I very nearly went there instead, imagine what those patients went through?!
Anyway, I just got back from the last burn and am recouperating on the sofa.
Trying to figure out how soon I'll feel like traveling so that we can go HOME!!!
Right now, we have reservations for the 4th of Oct., and sometimes that seems doable, othertimes, like at 3:45 AM when I'm throwing up and coughing with the chills it seems crazy.
Haven't decided on 3rd round of chemo, we meet with the MO doc on Thurs. We'll see...
I MAY do it (if at all) back at UCSF.
That's it for now...thank you for everyone who helped us get through this.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#46004 09-27-2005 10:24 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Congratulations Michael!
I know you are desparate to get home, I would be too.
Onward and Upward...
Cheers
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#46005 09-27-2005 10:31 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Congratulations Michael, Seth and the team
You have DONE it and you now deserve lots of rest and TLC at home. I wish you good health as you recover from the treatment.
Lots of love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#46006 09-28-2005 01:45 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Michael (and company)
Congratulations on the END! Now -- you have to heal!
(Barry came home yesterday, they typed his staph and it responds to an oral med so they sprung him -- he was about to walk out anyway as the food was so awful and they wake you up every 3 hours to make sure you haven't died, I guess... <gr>)
Again, wonderful news, be good, be safe, and keep in touch...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#46007 09-28-2005 06:20 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Michael and Seth,
I am so glad this is over for you. What a rough time you had. What are their plans for your follow up treatment if you have problems with the side effects? Are they referring you to someone good in CA? Hopefully you don't have to fly back to NY for checkups every 3 months.
Hope you are able to fly home soon. Recuperating at home by the sea should improve your spirits immensely. Give Zach a pet for me.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#46008 09-28-2005 06:28 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Well done Michael!!! You just kick back and try to rest now....Keep us posted, Love Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#46009 09-28-2005 10:48 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | thank you all!!
Gail, is Barry done now too?
Today, my biggest problem is phelgm.
How long does this go on????
It's driving me crazy now too.
In fact, nothing bothers me as much as the seemingly gallons of spit I seem to produce.
I have to wake every 30 to 45 minutes to cough up a bucket of snot!
(Gross huh...sorry)
Any suggestions..?
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#46010 09-28-2005 11:05 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Hang in there? Patience.
Michael, I'm not going to discourage you by telling you how long it took for the phlegm to go away for me because I seem to be really on the long end of average recovery time from radiation in all sorts of ways.
But maybe it will help to hear that I completely understand how frustrating the waking every 40 mins and constant spitting of mouth-gunk is. Yes, it IS gross--but we've all been there I think so its OK to talk and moan and groan about it if you need to.
As you know already I think, many people here have found a suciton machine helped--it irritated my mouth too much to use at the power of suction it needed to have to get significant amounts of thick phlegm it was also sucking my gums and cheeks and that hurt. But I'd recommend trying it.
I also did get SOME relief from the Mucinex/guafensin. If you can't swallow the big Mucinex tablets (I couldn't--and you can't grind them down to flush through the PEG), you can buy generic "Tussin" cough syrup that has nothing but guafenesin in it and put that through your PEG (you have to do it every 3-4 hours). It helped make the phlegm a little less viscous--so when I did swallow it I was less likely to vomit--it didn't make it go away entirely by any means. though.
I relly am sorry you are feeling so awful. I rememebr very clearly how ycuky the weeks immediately following rad were for me. Just rememebr time passes and this will pass and you will heal.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#46011 09-28-2005 11:35 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Nellie, did you say "weeks"..? UUUgh! 
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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