NED!

vickyd123

My husband's had his first PET scan on the 2cnd of this month. NED!!! We were so happy and relieved. The rad onc says that it's the only one he'll have. He said that he'll go in every 3 months for a scope for 2 years, and then every 6 months from 3-5 years.

As happy as this news was, the side effects from everything are really starting to take a toll. My husband did so well through the treatment and it seems even though his throat has healed there are other problems that are really depressing him. I personally think considering he's only 3 months out he's actually doing quite well. He was back full time to work ( he worked part time all the way through) one week after he was done rads. He has dry mouth and it's driving him nuts. He can't eat without a gallon of water every time he eats. It takes him forever to get through a meal. He doesn't even want to eat anymore because he says there is no enjoyment. He has a big fluid filled neck which he just hates too. His voice also sounds really weird which is the least of his concerns. He hates having to talk too long because his mouth dries out so bad. He has tried everything for dry mouth but nothing works. He can taste almost everything but he just can't stand the process of eating anymore. I would love to hear how long it can take for the dry mouth to go away. I know it might not but it does sometimes right? How long can it last before the saliva comes back?

 

As soon as he gets home from work he goes right to bed and sleeps for 2 hours too. I told him to think about what the doctor told him....he won't feel like himself for at least 6 months. He told me yesterday that he feels like he should be better that what he is by now. It's frustrating to see him so down on himself...

 

Thanks for letting me vent. NED though and THAT is something to be thankful for.

wmc

That is why we are here..............

I never had to have chemo or the radiation, but do understand so much of what he is going through. First let me say it usually will take some time, and it so different for everyone. Some it can be a few months and others it can be some time. I only had surgert to remove my SCC tumor, and 86 lymph glands, and my larynx. My swelling went down fast but I will always be numb on the left side from my ear to my chin. You get used to it, you just have to be very carful when you shave as you can cut yourself and not know it. Now when they took my larynx you also have no air going through your nose or mouth, onle through the hole in your neck so you can't smell. It took some time to get used to all the hot air I exhaled right undre my chin. I thought I was going to go crazy. Even cryed when I was alone and would think I can't do this. Well I did and it slowley got better, it takes two things. First, you have to accept it. you are still alive and would not be otherwise. Second, it can take time and some things take a long time. A good part of eating is smell. Oh that smells so good. For me, that is only a memory and smell is one you can not recreat in the mind. I can't remember how a peach smelled. So I made a divice that goes from my neck to my mouth so when I inhale it goes through my nose then out my mouth then in my neck and I can smell. I will not go outside with it, but I can smell if I think out of the box.

He is pushing his body a lot and he will get very tired. When they do blood work ask for a thyroid and vitaminD test also. They get over looked and can do so much to you.

You make sure YOU get rest as well as you worry about him which is also hard on you. Please never feel bad about venting. It does you good and at times the only way to stay sane dealing with this disease. Know ypo both are in my thoughts and prayers. It takes time and Never Give Up..

Bill

MrsBD

Questions

"Vicky123", I've been thinking about you both and praying you're doing well. As frustrating as the recovery process is, your hubby's complaints are not unusual.  I'll try calling you tonight. Beth 

avisemi

CONGRATS! Awesome

CONGRATS! Awesome news!!!!

I'm amazed he worked through treatment and was back full time after a week. WOW.

My husband is 3 and a half months out of treatment. He is getting better and better but has some of the issues you mention. He was completely out of commision for the last month of treatment and was out of work for another month before returning to work. When he gets frustrated about where he is right now in his recovery, I remind him of where he was before. It is easy to see the big difference and this helps him feel better. This might not work with your husband since he seems to have done very well during treatment.

 

 

Hondo

Hi Vicky
Vent on all you

Hi Vicky

Vent on all you need

He sounds normal for all he been through and being able to work all the way through treatment is a God sent. It showed how strong he is on the inside and how determine he is to get better and get back to life again. But the treatment is not fully over just yet the side effects are all part of it and it will show what our new normal is. The best news right now is being NED, as Bill said you are in the right place for help on how to cope with the side effects and all of us are here to help you both.

PS: Thank you for being a wonderful caretaker

Tim

yensid683

It does get better!

it takes a while, but it does get there, just so slowly that it's maddeningly frustrating.

I was in a similar place, (stage IVa, base of tongue, SCC with left nodes involved) and had induction chemo and concurrent radiation and chemo.  After treatments ended I was shot, fatigue like you can't believe, a mouth drier than a dog biscuit, no ability to taste anything, and swallowing even water was an experience and a half.

It was just about 3 months before I was able to even attempt eating real food.  it had to be soft and wetter foods worked better.  It was a struggle to eat anything and yes, I had to have water with me to eat, and would take so long to even finish a bowl of soup that I had to put it back in the microwave to reheat it (more than once too). 

It was a very slow process but I did recover the ability to eat and enjoy food again.  An added bonus was that once I was able to tolerate real food, the fatigue seems to fall away.  I spent the month of September struggling with food and crushing fatigue, but it all but disappeared as October moved to November!

He will recover, let him know it gets better and encourage him to try, but don't obsess over it and don't push, if he is anything like me he'll push back and resent even trying, letting alone wanting too.

I had my last rad in July of 2012 and am largely back to normal, I can eat just about anything, though the extremely dry food items like bread, chips, pretzels, and over cooked chicken are challenges, I've mastered the water balance, sipping the right amount of water so I can enjoy these dry items.  I miss being able to simply pick up a handful of Doritos, but I get to eat them, just in a new way.

 

Peter

CivilMatt

better NED's ahead

The 123,

congratulations to your hubby, he really deserves it.  Tell him to not let the three months, six-month, or one year window bother him.  For many it does get much better.

I did not eat seriously for seven months but tonight I had barbecued pork and coleslaw with 2 gallons of water and it was so good I went back for seconds.

Every night at bedtime I take two Xylimelt tablets for my dry mouth. If the dry mouth bothers me during the day I take another one, no biggie.

For my swollen neck, the edema, I received neck massage and then learned how to do it for myself, it is esay and it  worked for me.

I went through speech therapy and with a little bit of work I received a lot of improvement.

The old me is 3+ years gone and the new me is all I have, I’m going to make the most of it.

Now for your good old NED, for me it trumps all the lasting side effects of treatment. I hope you feel better soon.

Matt

vickyd123

CivilMatt said:

better NED's ahead

The 123,

congratulations to your hubby, he really deserves it.  Tell him to not let the three months, six-month, or one year window bother him.  For many it does get much better.

I did not eat seriously for seven months but tonight I had barbecued pork and coleslaw with 2 gallons of water and it was so good I went back for seconds.

Every night at bedtime I take two Xylimelt tablets for my dry mouth. If the dry mouth bothers me during the day I take another one, no biggie.

For my swollen neck, the edema, I received neck massage and then learned how to do it for myself, it is esay and it  worked for me.

I went through speech therapy and with a little bit of work I received a lot of improvement.

The old me is 3+ years gone and the new me is all I have, I’m going to make the most of it.

Now for your good old NED, for me it trumps all the lasting side effects of treatment. I hope you feel better soon.

Matt

Thanks

Thanks for the support everyone, it really makes such a HUGE difference. Seems like it won't ever get better but when I look back there have been major changes. I guess because it happens so slowly you don't realize that things are getting better. I'm going to look in to the Xylimelt Matt. And Beth, thank you so much for everything, you helped more than you'll ever know! I am not the one with Cancer but I can tell you from the other side, this has been life changing for me too. I spend 90% of my time trying to "fix" my husband and I know I can't but I keep thinking if I just look hard enough and do enough research I'll find the magic cure for all the side effects.....doesn't happen, but I can't seem to stop; it's exhausting.

I don't know what I would have done had I not found this group. Somehow knowing that everything he's dealing with is "normal" seems to take some of the stress away. Thanks again!

mart62

vickyd123 said:

Thanks

Thanks for the support everyone, it really makes such a HUGE difference. Seems like it won't ever get better but when I look back there have been major changes. I guess because it happens so slowly you don't realize that things are getting better. I'm going to look in to the Xylimelt Matt. And Beth, thank you so much for everything, you helped more than you'll ever know! I am not the one with Cancer but I can tell you from the other side, this has been life changing for me too. I spend 90% of my time trying to "fix" my husband and I know I can't but I keep thinking if I just look hard enough and do enough research I'll find the magic cure for all the side effects.....doesn't happen, but I can't seem to stop; it's exhausting.

I don't know what I would have done had I not found this group. Somehow knowing that everything he's dealing with is "normal" seems to take some of the stress away. Thanks again!

Dry Mouth

I am 10 months out and my mouth still burns and my salivary glands do not work.(NED) Went to a local support group and they let me know this was completely normal. My dr was like " most of my pts are over this by 6mo out". This is not true and those words contributed to my depression because I started thinking I wasnt recovering like most, something must be wrong. Everyone in the group had the same problems. One girl got her salivary glands back after 14 mo. I know there is hope. The Xylimelts work great, ordered mint free from the company oracoat.com. I probably use 3-4 during the day and one at night. Cant say enough good things about them .Found out from the support group.

tomb247

Swollen Neck

Vicky, I too have Lymphedema in the neck and have found the self massage helpful in controlling and reducing the swelling by getting the Lymphatic system moving again. All of the other things your husband has gone through, we all have experienced to some degree. They do get better. I am almost 4 months out from radiation and eating pretty much whatever. Still have some choking issues and have to drink a bunch of water but managing. Taste is improving slowly but is better.

Here is the link to the youtube video: https://www.youtube.com/watch?v=Q9FP6AHj9Eo 

Let me know if you all have any questions. I emailed the thereapist in the video and it is ok to do 2 to 4 times daily as long as no soreness arrises or skin is not affected.

Good luck and God Bless,

Tom in NW Missouri