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#48386 06-22-2007 03:50 PM
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Hi everyone,

Thanks again for all the information and support in this forum. Sam completed his 35th radiation treatment today and his 7th Cisplatin dose on Wednesday. His white cells were down quite a bit so that prescribed a shot of Neulasta (stimulates the bone marrow). The mucous is pretty bad but otherwise the oncologist is relatively happy with Sam's mouth and skin compared to similar patients. What an incredible group of people at the BC Cancer Agency - will be weird not seeing those reassuring faces daily!

Elaine


Caregiver to husband 43, non-smoker, social drinker diagnosed Mar07 SCC tongue lymph node involvement. Started treatment May 2/07 35 radiation tx with 7 Cisplatin boosters completed June 22/07. Clear PETScan Oct 07
#48387 06-22-2007 04:52 PM
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Elaine,
That is great news that your husband is finished with his treatments. You sound like you have had your hands full with 2 small children. I hope things continue to go well for you and your husband.
I was wondering what stage your husband was.

My brother 41yrs old will be starting his journey this Monday 6/25th. He is stage 4 cancer on tongue and lymph node. Scheduled for 35 IMRT treatments and cisplatin/5FU 1st and 4th week of treatment.
He already has peg which have not used yet.
He can't swallow food at this point but liquids only and he hasn't even started treatment yet.
I ordered him the carnation 560cal drinks on line and he likes them.
I am very nervous but glad he is starting treatment this next week. He will be admitted for one week to get his chemo, using vein.
Treatment center is over 1 hr away.

We are so ready to fight this cancer and beat it.
My mother just passed away 11/06 from tongue cancer at age 71,(non-smoker) so my whole family is in a state of shock that now my brother has been diagnosed. The docs say not hereditiary, but who really knows.
He never smoked, chewed years ago but quit. Recently been drinking alcohol from loss of my mother, I think this is how he coped. I also found out he had a spot removed on tongue about 8yrs ago which showed focal dysplasia. Never had it followed up on. I just found this out recently, so I was shocked.
Can't go back and change the past, only move forward.
So I think will all these factors above and some family history put him at risk.

I am trying to stay strong, but it is very hard.
All I can do is take one day at a time.

congrats again on end of husbands treatment.
It must be a great feeling for you both.

I remember a quote someone on this forum stated before that I tell my brother.

Positive thinking prepares the mind to work miracles, the rest of the body follows.


Take care
Michelle

#48388 06-23-2007 12:32 AM
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Elaine,

That's a great milestone but I'm sure you've heard this before, hang on for a few more tough weeks.


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.
#48389 06-23-2007 05:13 AM
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One step of the journey done. Great! like David says hang in there. We are 8wks past our last rad and the mucus is still heavy. So one day at a time. But the worst is behind you. Good luck. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
#48390 06-23-2007 10:01 AM
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Gotta disagree a little with w/ what LJ said. I don't think the worst is over because my 2 weeks post Tx were my worst by far but at least the TX part is over and that is a great thing to finish.


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.
#48391 06-24-2007 03:20 AM
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So far there's more to deal with since Sam's throat started hurting (was not an issue during tx)and his skin around the neck is starting to flake and is more itchy than before. I guess so early into the "recovery" stage I have to agree with David (accountants have to stick together on the numbers part, huh?). Stopped using Magic Mouthwash as he finds it really stings.


Caregiver to husband 43, non-smoker, social drinker diagnosed Mar07 SCC tongue lymph node involvement. Started treatment May 2/07 35 radiation tx with 7 Cisplatin boosters completed June 22/07. Clear PETScan Oct 07
#48392 06-24-2007 04:20 AM
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I'm not an accountant...I'm a lawyer. Is it OK to agree with the number crunchers? I was far sicker during the three weeks post radiation than I was at any point...even the days immediatley after surgery.

And I had a LOT of surgery, plus respiratory arrest, followed by cardiac arrest, defibrillation and coma for nearly a week. When the RO told me that I would be a lot sicker after radiation, I told him he was crazy...there were days that I felt too sick to die after surgery.

He was right, and I apologized for doubting him. I was in bed 23 1/2 hours a day for oer a week after radiaiton ended. The only "vertical time" I had was to go to the washroom.

I developed some rather nasty burns on my neck from treatment too, but they really "ripened" about 4 days post the last Tx. They healed quickly, and that was the first real step of progress that we saw. After that, it was all....slow.

Slow, but steady. Can't ask for more than that!
Wyane


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#48393 06-24-2007 07:09 AM
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I am having the same problem here too. They had to do a tracheostomy and my neck was already burned and flaky and now it seems worse under the trach neckband. I have also developed a rash that started right at my shoulders on my back and is moving down my back. I put Eucerin creme on it and it relieves it for awhile and then its like it starts itching like crazy. Who would be the best person to see about this, a dermotologist. My wife says she thinks I have developed an allergic reaction to the antibiotics and told me not to take any today and call the doc tomorrow.

I also have to agree with david here in the sense that the 3 weeks post Tx for me have been the worse. I have been in the hospital twice and cant seem to get it all together. I sleep alot and cant stand that either. They have yet to find a sleeping pill or combination of two that will put me right to sleep. It usually takes me anywhere from 1-3 hours to fall asleep.


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
#48394 06-24-2007 07:52 AM
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Billy, if the rash persists, ask your Doc if you can possibly take some Benedryl. When John's skin got irritated under the trach neckband, we put some folded soft gauze pads inside neckband, sometimes with a light coat of lydocaine on his skin. Don't know what pain meds you are on, but Hydrocodone was John's favorite. He would fall asleep shortly after taking it. It also helped dry up the mucous. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#48395 06-25-2007 08:00 AM
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It's great that you made and Sam have made it through treatments. Hang in there. Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#48396 06-25-2007 09:23 AM
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I used aquaphor from eucerin on my skin and it helps a lot. You might want to try it. I would just cake it on.

#48397 06-25-2007 10:48 AM
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I used Biafine and it was wonderful but it can't be used on an open wound. It did clear up the redness from radiation better than Aquaphor or anything else they gave me. It was also prescription.

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
#48398 06-27-2007 04:17 AM
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Congrads on getting though the treatment. But I agree with several others. The worst maybe yet to come. Marvin has just started to really improve in several areas this week. We are 9 weeks out. I think that thick mucus is finally past us(which was a big problem for him)he is starting to have a small amount of energy. He has set a time in his mind that he hopes to get back to work which is Aug 1. I think setting a goal has help him. Good luck.


Barb
CG for Marvin.
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