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Joined: Dec 2012
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ALK,

There are many people here who are wondering how your recent doctors appointments went. If you are up to it, please let us know how you are doing. Once you become a member of our family we always remember you and care how you are. Even if you don't feel like sharing details, please check in. You are not alone.



"I have always depended on the kindness of strangers."

Blanche, Tennessee Williams' "A Streetcar Named Desire"
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I feel exactly what you do. It's a bit hard sometimes to trust the docs. Are they just in this for money? Ever notice that both of the only AMA approved cancer treatments CAUSE cancer?? Anyway, that being said, I am on my 3rd of 30 radiation treatments for salivary gland cancer and I have done a TON of research on head and neck cancers. I do believe that the only thing to do if we want to live, is to follow the doc's advice and as much as it sucks, follow their recommendations to the letter. I don't trust the system and I am not even sure if I trust my team of professionals totally yet, but I do know that I need to go through with this treatment, despite hating it. I wish you the best and a smooth treatment!!


1/11/16 Parotid Tumor Removal
1/14/16 Mucoepidermoid Carcinoma Dx Stage 2, Low grade
1/29/16 Tumor Board agrees 30 IMRT RAD
2/12/16 PET says no MET, but "bilateral tonsils reactive"
2/17/16 RAD treatment began
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Discovering you have cancer is like a roller coaster. There is so much information to understand and decisions to make. Who do you like, how comfortable are you with them, do they have the experience to take care of you properly. My roller coaster was two very different recommendations. One Dr. wanted to remove half my tongue and give me a tracheotomy and the cancer board at another hospital said, I need 6 weeks of accelerated radiation only. Of course I took the radiation path it was basically 6 Drs over 1 surgeon's opinion. Now that radiation completed tis past Friday the 19th of February, I still have the fear of not knowing if the one Dr. was correct. I won't know for at least a month. This is just scary stuff, I hope you are on the road to a good decision with people you trust.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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Thank you all for your replies. I was certainly quite angry about the whole situation. It's no one's fault that they were able to make a better diagnosis based on more accurate information. It was just incredibly frustrating going through that process of figuring out just how bad it really is.

I had surgery about a month ago. They removed the tumor on my tongue with clean margins and 3 of 20 lymph nodes were cancerous. I just had a port and feeding tube put in yesterday (Has anyone else had this? Is that a normal thing? The tube is painful...) and I'll be starting chemo-radiation on the 23rd. I'm soo ready to get started and get it over with!

I am also apprehensive about putting my body through all of that because there are no guarantees and there's always a chance that it doesn't get rid of it completely. However, I understand that it's better to hit it hard the first go around and if it does come back, well, that's for another day.

Thank you all for your encouragement and support!


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Jan 2016
Posts: 14
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It's good to hear that I'm not the only suspicious one! I suppose it's just the fear of blindly following instructions about something that I don't understand. And the fact that I've never had any medical problems in my past and now I'm in the thick of it.
I hope your treatment is going well with little side effects!


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Jan 2016
Posts: 14
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Wishing you a quick recovery and some peace!


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Jan 2016
Posts: 14
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Posts: 14
Thank you! It's certainly been a roller coaster. I'm feeling pretty great now, recovering from surgery but will start chemo-radiation in about two weeks. I'm hoping for the best and trying to stay positive and keep my mind distracted smile but also trying to gain as much information as possible.


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
Joined: Jun 2007
Posts: 10,507
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I had both a port and feeding tube. Yes, those things can be painful at first then just uncomfortable the next couple days. After about the first week they kinda settle and its just a bit strangle having them there. Try to think of them as both a temporary tool to help you to get thru this. Unfortunately its alot to absorb and not enough follow up instruction with the tube. If you need help with it I can give you all kinds of tips.

Chemo and rads for many patients isnt easy. The hardest thing is to keep your intake high enough. If you can start now getting used to taking in at least 2500 calories and 48-64 oz of water daily then you will be ahead of the game when you start. Your doc can also write an open prescription for you to get extra hydration in the chemo lab. It will instantly perk you right up when you know you are not meeting your daily water goals. Some patients will make it a habit to go a few times a week. I know the calories sound excessive and as a young person you may be hesitant to gain weight. If you are slim, gaining a few pounds going into this would be a good idea. Your body is going thru incredible changes right now and burning up calories much faster than normal trying to fight off the cancer and rebuild itself. This is why its so important to keep your intake at least 2500 calories daily, more is even better and will make the next few weeks/months much easier to get past. This will need to continue until at the very least you hit the first year after finishing rads. Also, even with a feeding tube its very important to keep swallowing water every single day even if your throat is sore.

We are here to lean on and we will help get you thru everything.

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: Apr 2016
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Hi moona11! I see you recently went through surgery? How are you feeling? Any words of wisdom for me? I am scheduled for surgery 4/14/16. I'm super nervous but I'm hoping this will save me! I hope you are recovering well! I would love to be in touch!


CA patient age 30
Stage 3 OC
Surgery Partial glossectomy 4/14/16
Surgery on neck 1 lymph infected
Pathology tests show intermediate risk
Radiation starts soon
Chemo suggested but not mandatory
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Posts: 16
ALK, I'm glad to hear your surgery went well and I hope your radiation and recovery afterwards go well! Your optimism is inspiring since I am scheduled for surgery in about 1.5 weeks. I'm super nervous but I am confident in my medical team. Please keep me updated on your prohress. We can journey through this together!


CA patient age 30
Stage 3 OC
Surgery Partial glossectomy 4/14/16
Surgery on neck 1 lymph infected
Pathology tests show intermediate risk
Radiation starts soon
Chemo suggested but not mandatory
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