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#185554 09-29-2014 05:54 PM
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6 years ago today my beautiful daughter, mother of 3, lost her battle to this evil disease. Just received a phone call from my cousin saying that her son (same age, father of 3) has stage 4 tonsil cancer. He is being fitted with his mask tomorrow & will start his radiation (35) next Mon & 3 chemos the following week. However he is having Tomo radiation as opposed to the IMRT my daughter had. Of course I will be the go-to person as I've walked this road before. Hoping the Tomo will work better for him. As I'm just returning to this journey after 6 yrs, any advice if the Tomo will work better than the IMRT?

Caregiver daughter Teri, age 43, mother of three, non-smoker, non-drinker, aerobics instructor, SCC 4/06 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 35 IMRT; metastatic return 4/08 to lung, bone, kidney. 10 additional radiation to lung, 3 Docetaxel + Carbo, lost her battle on 9/29

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hi, my name is Wendell rhoe,and i am a tongue cancer survivor,may i ask how old your loved one is??only because i was experimented on,because of my age and the type of cancer i had, (Herbitux),was a new kind of chemo, that worked on me, at age 38,but it calls for some of the highest amounts of radiation,wich older patients 50yrs and up,didn't fair so well,but i did. ask the onchologist,if it might be an option for your loved one, let me know either way,i will pray for you and yours.

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HI there... Paul B here I believe has Tomo therapy so he might be able to answer your questions.

IMRT is still the gold standard, but a few hospitals are trying Tomo. Sorry to hear about your daughter. It's a bizarre disease.

I do think the cause of your daughter's disease is different than for your nephew. traditionally tonsil cancer is HPV related. Because it is caused by a virus it responds better to radiation and chemo.

I'd be willing to bet your daughter's cancer (same as mine) was not HPV related. Usually the first line of treatment is surgery as you describe followed by radiation and chemo. Unfortunately this cancer can be highly aggressive, and a whole host of factors come into play when looking at outcome.

skill of the surgeon, hospital, overall health, are just a few.

Hugs and blessings to you. I don't envy you going through this again.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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There is a recent thread with info about tomotherapy. This would be helpful to you in learning about that type of rads. Best wishes with your cousin.

Tomotherapy thread


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I had Proton Therapy, as one of my radiation treatments, and just responded to the above Tomo thread. Tomotherapy is a CT guided form of IMRT.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Wendell, he is 43, the same age my daughter was

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Cheryl, you're right, my daughters was not HPV. I'll have to ask if my cousin's is. The scary thing is that it's stage 4A.

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I'm sorry that your family has another member dealing with a Head and Neck cancer. There are many here who have Stage 4a. Due to the insidious nature of this disease, many diagnosed with Oropharyngeal - throat cancer - are Stage 4 already when diagnosed.
My husband was stage 4a. His tumour was huge already. He was only diagnosed when he started to slur his speech as a lymph node pressed on the Hypoglossal nerve. That was 4 years ago this month. Kris is alive and well as are very many others here who were also Stage 4.
So, have hope. Surprisingly, many who are only stage 1 at diagnosis don't make it. You really can't tell. I too thought Stage 4 was a death sentence . It is not. There are many factors that come in to play. So, be hopeful.
Keep coming here, we will all help as much as we can. Also encourage your cousin or her son and his family to join. I did not find this forum until we were just finishing radiation/chemo. So wish I had found the boards from the beginning.
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Stage 4A has a bit of a different meaning if it's HPV related. There are a lot of stage 4 HPV cancer survivors here on this forum because it responds so well to rads and chemo. Hopefully, the outcome will be the same for your nephew. A stage 4 for non HPV - is terrifying because it is a harder cancer to treat. To be honest even a stage 1 non HPV is scary if the drs don't move on it quickly and do it right the first time.

Hugs and hang in there. I'd be willing to bet his is HPV.

take care


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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