Three years out from treatment.

frokker68

Been a long while since I've posted here.  Lots of new names here.  Sorry for what you all are going through our have gone through. 

May is 3 years since my treatment.  S4 BOT. Left side. 1 node each side of neck.   7 weekly  cisplatin, 35 daily rads. No surgery.

Other than a laundry list of side effects, I'm well.  

Good luck with your treatment and recovery everyone!  

 

Keith 

MarineE5

Thank you for the update

Keith,

Thank you for stopping by and updating us. I am sorry to read about the laundry list of side effects, I hope they are manageable and not causing any real discomfort. 

Take care, stay healthy and safe. My Best to You and Everyone Here

PipLily

Hello!

Just wanted to say thanks for posting! My husband is only a week and a half into treatment, for BOT also (T1N1M0); and it’s so encouraging to hear from others who have made it through treatment! Continued good luck to you!

Elizabeth

Dean54

I'm getting close to my 3

I'm getting close to my 3 year start of this terrible journey also and have at least half my saliva and taste back but also have the dreaded side effects like tinnitus. Also, the side of my neck where the cancerous lymph nodes are/were is getting larger so now I have to get a CT scan to see what's up with that. Hope it doesn't involve a neck dissection that I figured was coming sooner or later..UGH. Can't let your gaurd down for a minute can we?

wbcgaruss

Hang in There

I congratulate you on being close to 3 years out. the further out the better. As you are dealing with the usual side effects don't think that the neck swelling is cancer again as it could be something else. It has always been said on here "It's not cancer till they say it's cancer" verified with proper testing and biopsies. Wishing you the best-Take Care-God Bless

Dean54

Thanks for the kind words and

Thanks for the kind words and being positive as I'm far from it for some reason but you are right, it's not cancer yet.

BZBZ

PipLily said:

Hello!

Just wanted to say thanks for posting! My husband is only a week and a half into treatment, for BOT also (T1N1M0); and it’s so encouraging to hear from others who have made it through treatment! Continued good luck to you!

Elizabeth

Hello Pip

I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

big G

Dean54 said:

Thanks for the kind words and

Thanks for the kind words and being positive as I'm far from it for some reason but you are right, it's not cancer yet.

3 years

Congrats on the 3 years. some side effects will always be reminders of the experience but we learn to live with them. Wishing you contiued success.

big G

BZBZ said:

Hello Pip

I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

BZBZ

I also had TORS, you can read my csn space if you like. Are you having neck dissection? Sounds like you are in the very early stage which is great and the TORS is very successful with early stage treatments. 

paintmatt

Starting treatment

I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

 

PipLily

BZBZ said:

Hello Pip

I'm new to this site and will be getting BOT using TORS on 07/06/20.  I'm also T1N1 and of course am wondering what to expect.  Is there a way I can view your posts or experience on this site?  Your consideration is appreciated and I hope your husband is doing well.

Good morning!

Hello BZBZ.......First, I’m sorry you have to be here, but you have found an excellent resource in this forum. This was my sanity in the early days. I gained so much knowledge from everyone. I actually need to build the profile under my log in that would give details about my husband’s experience. Thank you for the reminder. Please do get on the Superthread at the top of the forum page. Lots of great information. 

First, as many people told and encouraged me for my husband, YOU CAN DO THIS, AND YOU WILL GET THROUGH THIS!! It is difficult, but very very doable. Just take one day, sometimes on hour, at a time!! Are you also having a neck dissection with the TORS? My husband had  bilateral neck dissection- there was a small spot on the PET scan seen, on the opposite right side, that they wanted to assess. The right side was negative, thank goodness. He had 2 positive nodes on the left, so ended up needing radiation to the left side only. Also, pathology returned showing one of the nodes positive for extracapsular extension- thus, chemo was also required. He finished all treatment June 3, and is doing amazing!!! 

Im guessing they are waiting to determine if more treatment is required until after your TORS? My husband ended up having the tonsillar bed resected, and base of tongue. The very small tumor was found BOT. Just being honest with you....the post op pain was the most difficult for him, even compared to the radiation treatment pain. I would encourage you to please please just keep up with all your pain meds. And make high calorie, high protein smoothies to get the most bang for your swallow buck! But also know, that just when he thought things would never feel normal, around day 14 post op, like clockwork almost, the pain plummeted, and he started to improve very much. It followed the path everyone told us would happen. 

I wish you the very very best. It’s a difficult time, but you will get through it. Use this site. Let us know what to follow after TORS. Praying for strength for you!

Elizabeth

PipLily

paintmatt said:

Starting treatment

I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

 

Wishing you the best on Monday!

Use this site, and ask all kinds of questions! You can do this!!! 

Elizabeth

wbcgaruss

paintmatt said:

Starting treatment

I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

 

Paintmatt Wishing You

Great encouragement as you begin your treatment regimen. Stay strong as there will be hard parts to get through but as you've said you have the knowledge of people on here you have read about treating this terrible disease and they have come out on the other side and conquered it and you will too-Prayers Your Way-Take Care-God Bless-Russ

paintmatt

wbcgaruss said:

Paintmatt Wishing You

Great encouragement as you begin your treatment regimen. Stay strong as there will be hard parts to get through but as you've said you have the knowledge of people on here you have read about treating this terrible disease and they have come out on the other side and conquered it and you will too-Prayers Your Way-Take Care-God Bless-Russ

Thank you Russ for the

Thank you Russ for the encouraging word 

 

motorcycleguy

paintmatt said:

Starting treatment

I start treatment  monday it is good to see people that have a gone through this  and are better in a few years   wish me luck

 

paint,

You're in the right place. Let us know how you're doing, and you'll have a LOT of help and support come your way!

I wish you the best possible outcome, from your treatment. It can be challenging at times, for sure - but the people on here are proof that you will make it through!

mg