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#195495 12-10-2017 12:02 PM
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Hamguy Offline OP
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I've been saying that medical problems are just a penalty for living too long. I never expected to get diagnosed with cancer at age 81. There is no family history so I thought I dodged that bullet. Now I'm told that heavy use of alcohol and tobacco is the cause. Well, even though I gave it up in the 80's, It has come back to bite me.
I have five wonderful kids and a lot of support. That's my reason for trying to beat this thing. I took care of my wife during her battle until she died in 1998. My Dr. tells me that I should be self-sufficient through the radiation and chemo. Not comfortable, just 'self-sufficient.'
I had a PET scan last Wednesday and saw the Dr. on Friday. He told me the cancer has not spread. I will start Radiation on the 20th and I'll find out about the chemo next Tuesday when I see another Dr.
I'm sure this will not be any fun. It has already taken my Ham Radio hobby away from me. My voice is very fragile. I hope it comes back okay.
Very best wishes to all.

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Welcome to OCF, hamguy! Im so glad you have joined our online "family"!!! Going thru rads with chemo is not easy at all. Many patients have some pretty intense side effects. Stick with us and we will help you get thru this as easy as possible.

You are very fortunate to have lots of support! I dont know if you are used to driving yourself but you might want to consider lining up family and friends to help drive you back and forth to your treatments. Most of us (myself included) who thought we'd be ok ended up needing help with our transportation. The American Cancer Society has a driver program to help get patients back and forth to their appointments. I became a driver after using the program a few times during my treatments. Sometimes its nice to have someone who has gone thru treatments to talk with. Its pretty common for patients to lose their voice towards the end of their radiation treatments. Radiation is cumulative so the further along you get, the more you will notice the side effect, aches and pains. It continues to keep working after your finish your treatments.

Hopefully you will be one of the lucky 10% or so who sails right thru their treatments with hardly any of the side effects. The better you do with your intake, the easier time you will have. Hang around here and you will soon notice I can be a nag about intake. I try to help patients who are struggling to get thru it as easy as possible. I wasnt that good with pushing myself to take in enough and I suffered greatly, much more than I should have. I had a few hospitalizations due to dehydration and malnutrition. I dont want to see this happen to anyone else when I know what it takes to avoid those pitfalls. Every single day from right now until you hit your first year post rads (at the very least), you need to take in at least 2500 calories and 48-64 oz of water. If you are slim and/or want to put on a couple pounds before treatments begin, bump it up to 3000 or more calories daily. It sounds like alot but its not! When fighting cancer, your body burns up calories at an incredible rate. You do not want to lose weight during rads and chemo. Even if you are seriously overweight, your doctors will still not want to see you lose weight during rads. Prior to starting on the 20th, make sure you eat all your favorite foods, desserts too. Your sense of taste will likely change and you may struggle with your ability to swallow. Better to eat your favorites now than to get 1/2 way thru and get cravings.

Your doc should order a full blood test including testosterone and thyroid. Its easy to get these baseline numbers now before rads and chemo. But once you begin you cant go backwards and get those important numbers. Many of us have had our thyroid affected by rads and need to take a tiny pill everyday. You should also see your dentist and if you have any teeth that need to be removed, they should be taken care of before starting treatments.

Often people close to the cancer patient dont know what they can do to help. If you write down their names and contact info, down the road when you need help they can be contacted. Dont be shy! When going thru treatments, some days you may feel pretty lousy and will need help. Theres a million small things others can do that add up to being a huge help to patients. You could need a feeding tube for a short time. Its just another tool to get you thru your treatments and recovery.

Read about oral cancer, treatments and absorb as much as you can. An informed patient makes for a strong advocate. We'll be in your corner with you every step of the way. Best wishes with everything!


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
Joined: Dec 2017
Posts: 7
Hamguy Offline OP
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Thanks, Christine. I'll try to follow your tips! Have feeding tube scheduled for 19th. Doctors haven't sugar-coated my journey! Eating and drinking is going to be the hardest, I believe. They tell me I need to keep swallowing, too.
Thanks again.
Hamguy

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Im just checking in to see how you're making out. Please give us an update when you are able to.


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
Joined: Jan 2018
Posts: 3
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Joined: Jan 2018
Posts: 3
Hope you're doing well with your treatments! Things improve with time though, I must admit, the struggle can remain. Wishing you the best! I had base of the tongue cancer so I get where you're coming from. Am here if you need anything...


I'm so thankful to be alive! I want others to know there is always hope, even in the direst circumstances. My tongue cancer was agressive and ⅔ of my tongue was removed. I was told I'd never talk or eat again and, I am able to do both. Yes, it is difficult, but doable! So, always have hope! 😊
Joined: Dec 2017
Posts: 7
Hamguy Offline OP
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Posts: 7
Lost four weeks due to blood infections at hospital. They moved me to ICU with a DNR bracelet. I managed to get transfer to another hospital that pulled me through. I've had 1 chemo and 8 rads. So far, so good. Only one bad, "down" day- last Thursday. Chemo and rad tomorrow.

Joined: Dec 2017
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Hamguy Offline OP
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Thanks to all for your concern. I've had a real 'experience.' After all the time in the hospital fighting blood infections,I was really too weak to go ahead with chemo and radiation. I did have about two weeks to recover but in reality it wasn't enough. In spite of my weakness, the doctors wanted to proceed and they did what was necessary to keep me going. My daughter was available to drive me to treatments every day. Some days, I needed a wheelchair at the hospital to get to the treatment room.

Not that I'm not grateful for the treatment– but I'm even more grateful that it's over. In spite of the difficulties, I completed the 7 weeks on March 6. So, it has been 7 weeks and I'm just beginning to feel 'human' again. I'm having "swallowing" therapy now. I'll see the radiation doctor this week and he'll probably want a PET scan to see where I stand. The chemo doctor was glad to release me and said that they (doctors) had not expected me to complete the series after the "rocky" start that I had. I confessed that there were times that I didn't want to 'take it' any more. Thank God for my daughter. She was my greatest blessing through the process.

On the positive side, I think I was very lucky to not have so many bad side affects. The worst problem was a very sore throat for about a week and a half. The next was the incredible fatigue and weakness, which is finally improving.

Thanks again for your support!

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Thank you for posting an update!!! Its been a long time since we have seen you. Im so glad you have gotten thru your treatments and are finally past the hardest part of the recovery cycle. Keep a close eye on watching your intake thru at least the first year after finishing rads. Its a very long road to get you back on your feet and it takes lots of extra calories and nutrition to repair your body.

Best wishes for an easy recovery!!!


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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