My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

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RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Dlynn1210 on Sun Nov 18, 2018 05:45 AM

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On Nov 18, 2018 3:10 AM torehb wrote:

hi are u still available to help ?

I’m not sure who you are asking but felt compelled to,resold after I read a previous post. I was diagnosed in June 2007 with tonsil cancer (squamous cell carcinoma) Stage IV. I am/was not HPV positive. I underwent a tonsillectomy the following week, had dental work completed (teeth removed), and as soon as healed underwent chemo and radiation. I had my first clear scan in Dec 2007 and am still cancer free. So to answer an earlier question, head and neck cancers are treatable ‘and’ cureable! Diana

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Sdurnell on Mon Nov 19, 2018 02:41 AM

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Diana is a good source of information, especially on tonsil cancer.  I was diagnosed 9 years ago this month, and surgery and radiation cured me.  There were and are a lot of the usual side effects, but the thing that I'm really concerned about is the cure that gave me back my life after radiation.

There are lots of folks here to help.  You may get better answers to your own questions if you post a new message with your particular concerns.

All the best,

Susan

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Proxielocks on Wed Nov 28, 2018 10:08 PM

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Can I ask you a question? Was he HPV or not?

RE: My Husband Was Just Diagnosed With Squamous Cell Carcinoma Of The Head And Neck Stage 4

by Diamond_David on Thu Nov 29, 2018 05:20 PM

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get a second opinion. With checmo + radiation most of these have a 90% cure rate

Most

I've spoken to many and many doctors and hospitals do different things. I'm in Atlanta, great care but my radialogist had one choice and there were two

One guy I spoke to told me a doctor told him to have all of his teeth removed before treatment.

For head & neck cancer radiation is the go to treatment.

My story of what you'll go thru is below, its been 11 years

You've come to the right place. Diana started the site and she's one of the few women who had this. I had Tonsil cancer in 2007 so I'll tell you stuff and some stuff you won't be told.

1. With chemo & radiation it's 90% curable.

2. it's one of the WORST treatments for cancer you can get, but he'll make it

3. Feeding tube is a must. Easily 5 months with one. You'll still need to drink water, keep your throat open/working. Do so. See if NOW he can drink milk shakes. They have 700 calories. I was told after treatment to do so by my doctor, helped a lot, soothes the throat.

4. If he has disability policy, apply for benefits now. I have it, they paid 4 months of income for me. Your brain just doesn't work well.

5. The Radiation will burn his neck. Aquafore works well on it.

6. The tongue will get sores on it, they will recommend "Magic Mouthwash" (concoction the pharmacist makes), gargle with it, swish it and swallow it. Does work, for a while. There's not much you can do to eliminate tongue discomfort. Sorry.

7. Feeding tube. Go to a sports store buy 2 whistles with string. (If you can buy only the string around the neck only, buy 2). Tape a large safety pin on the tube end out of his chest. Attach it to the lariette so it doesn't pull on his chest. Wear it in the shower (I know they said to pin it to their short, you're shirtless in the shower.) After teh shower swap the wet one for teh dry one. Life is good.

8. Best to get tube removed within 90 days after treatment is over, don't be dependant on it. After removal drink milkshakes and smaller bites. Don't worry about calories.

9. It's a terrible treatment. It will be WORSE 2 weeks after its over. 

10. 4th week he'll start to feel better. 6 months later almost a new man. 1 year after treatment started he'll be as agood as new.

11. I had one lymph node cancerous; they took it out and did treatment. Other people I knew took ALL of them out on one side. I see no reason for that, some doctors have said "We're going to radiate that area any way, why go thru surgery""  I'm no doctor but other opions are a good thing. I have a sore neck at times because of that removal.

12. There are two types of Radiation:
   IMRT
   TOMO

Difference? IMRT is like spray a weed with a wide angle water hose. Water goes everywhere

TOMO radiation is like a flask light, or water hose with stream going just to ONE individual weed,

I had IMRT, sprayed radiation all over my neck . My neck is stiff, killed half of my saliva glands (I have to carry a bottle of water with me everywhere-drymouth and have it at night)
   It also ruined somewhat my thyroid gland, I take a pill nightly.
  I ad IMRT because thats the only machine the hospital had. My cousin had TOMO, directly pointed to the tonsil, throat area and he has no neck pains, rarely used his feeding tube and doesn't carry water bottle. I wish I knew.

13. For 3-4 years you'll see the dentist every 3 months rather than 6 months. Your jaw has less blood flow, hygiene is important.

14. Treatment is once a week for chemo, daily for radiation for 7 weeks. I drove myself for firt 4-5 weeks, couldn't after that.

15. He'll have scans every 4-6 months for 5 years. 

Others here will post things to help, I forget most of it.

Google "Chemo Brain". Its real. You get foggy at times. It's been 8 years for me, I don't remmeber well. I work with numbers and it's a struggle to do some math in my head (not 20% on a restaurant bill) but I gravitate to a calculator more now.

5 Months after treatment my eyesight decreased a bit. I wear glasses, in 8 years had to get new prescriptions 3 times. Radiation affected my low hearing a tad, not much.

before radiation I had my arteries in my neck (caraotic?) and were 100% open, now they are 40% blocked from radiation. Not a problem I'm told until 80% blocked. (difference in IMRT and TOMO)

I'm 67 years old, this January will be 9 years and have been pretty damn good 12-18 months after it was all over. But I did ask a nurse once about "if it comes back". She said half of people if it comes back opt to not go thru treatment because it's so rough. But again 90% cure rate. 

He will need lost of your support. YOU WILL need time off as well. Let him know from time to time you'll have other do things for "ya'll". I didn't know until after it was over how hard it was for my wife and she's just terrific. She's go to a friends house to cry. Make sure you have some YOU time and don't feel bashful about.

Oh, the most important topic

SEX

For me, not for 3-4 months and that was the only time for another 2. Got this at 59 years old and have always enjoyed a sexual relationship. After treatment its' just not happening without Viagra. At almost $40 a pill!

Lastly (Oh no, there's more???)

After tube was out I couldn't gain weight, didn't have an appetite (milk shakes help a lot!)

The doctor gave me a prescription to increase my appetite. At age 59 I almost ALWAYS slept thru the night, never got up to go to the bathroom. I didn't find out until later that this appetite helper pill makes you go urinate more. Now I wasn't getting a good night sleep. So I stopped it but the go to the bathroom problem never went away (and it didn't help my appetite)

To this day I have to take a pill nightly to reduce bathroom trips and I don't sleep well. 

But I am still above ground!

Hopefully others here will share where I missed. Good Luck
David 

 

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