 
#45982 09-18-2005 11:02 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 | Dear Michael
I am sorry that you have been having such a tough time. I hope you are recovering now and will be able to complete your radiation before long.
Thankyou for posting Seth. I must be hard for you to see Michael so ill - but it must be such a comfort for him to have you there.
Love to you both from Helen
RHTonsil SCC Stage IV tx completed May 03
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#45983 09-18-2005 11:51 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Seth, thanks so much for posting. My thoughts and prayers are with you and Michael. I know it is rough for you too. I am hoping things start looking up real soon! 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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#45984 09-18-2005 12:37 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Seth, tell him to try some Epicuran Lip Balm. That's what I used and it worked pretty well on the severely chapped lips. Chap Stick and it's petroleum based cousins are just about totally worthless.
Some people have had some success with combating the nausea with peppermint drops placed under the nostrils. The standard home remdies help also, soda crackers, anti-acids, etc. I used carbonated water and that helped with the mucous a bit. Morning was the worst time. I would have to sit up for a while and get the phlegm hacked out and then I could attempt to eat something. Sleeping elevated helped somewhat also.
I was briefly hospitalized for dehydration a couple of times and I felt better immediately after being rehydrated. I had many problems with secondary infections and thrush but I kept a stash of medications for these and was aggressive in warding these off before they became a much worse event.
His experience sounds a lot like mine. Tell him to hang in there - it will pass.
He's learning what we mean, up close and personal, by the expression - "it's no walk in the park".
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)
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#45985 09-20-2005 08:33 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 for the words and advice!!
Seth read the posts to me at the bedside daily.
I'm finally OUT...I broke out earlier and am glad to be back in the noisy apartment.
It's good to be "home", and I can't wait to get to our real home!!!
ONLY 4 more treatments left!!
Seth has developed a comprehensive med plan and is better at taking care of me than the nurses.
He has each med listed, Zofran, as needed for nausea, up to every 6 hours. Zantac for heartburn, as needed every 8 hours, Reglan, Oxicodone, Attivan, and on and on....
I had to get tylenol since I am still having fevers, but the Drs have no idea why, and my guess is it's from the tissue damage by radiation.
Also, my nose has been bloody lately...Not in the sense that it drips blood, but when I sneeze, or blow my nose there is significant amounts of blood, mostly bright red, but also some dark clumps.
Anyone else have that problem? I am glad now that I refused the daily shots of heparin in the hosptial. My lips are chapped and bleed a lot too.
Well..Other than these things I am feeling better than 5 days ago, and the good news is I only 4 treatments left!!!!!!!
(Did I mention I have 4 treatments left?)
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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#45986 09-20-2005 08:52 AM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Oh, I just have chills hearing you are almost done. Well done, Michael and company. My dad have little bits of blood when he blew his nose. I hope your Tylenol is syrup for the times you just want to squirt it in and as you may recall, my father had fevers of "unknown etiology".
Hooray!
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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#45987 09-20-2005 09:29 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Michael....awesome to hear you are out of the hospital! Even better still, you are feeling better and have only 4 more to go! I am thinking of you and praying for you and Seth....Take Care, 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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#45988 09-20-2005 09:37 AM | Joined: Aug 2005 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2005 Posts: 44 | Hi Michael,
Good to hear that you are home and out of the hospital!!!! You are well on the way to recovery and it sounds like Seth and you have it worked out well.
Keep your spirits high and get well. Praying for both you and Seth.
Love
Terry
Terry | 42 female| base of tongue w/swollen lymph nodes | Dx'd-Feb 05 | Stage IVA T2N2M0 | radiation/chemo 8 weeks finished 3rd week May/05 | bilateral neck dissection 9/2/05 45 nodes all neg.
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#45989 09-20-2005 10:18 AM | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Aug 2004 Posts: 100 | Michael,
Good for you! 4 more to go!!! I think Rod had a little bleeding too. It was mostly in his throat(from radiation) but he did have a little from his nose, I think it was because everything was burnt and soooo dry. His last couple treatments were the worst but he made it & so can you!Just think after the 4 treatments are over it can only get better!God bless~Maureen
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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#45990 09-20-2005 10:35 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Go for it Michael! Barry has five more 'cause the tomo machine was down one day, otherwise you two would finish at same time. We need to party!
Hopefully the nasty problems will start to resolve in the next month, just take it easy and REST! and HEAL!
Best, 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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#45991 09-20-2005 10:35 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Go for it Michael! Barry has five more 'cause the tomo machine was down one day, otherwise you two would finish at same time. We need to party!
Hopefully the nasty problems will start to resolve in the next month, just take it easy and REST! and HEAL!
Best, 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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