I just finished treatment

oceangoer

Hello,

I'm Tim. I just finished 35 rounds of radiation and 5 rounds of chemo. Boy this took much more of a toll on my body than I thought. I still can't swallow (it's only been one month) nor drink much. I lost 40lbs through this and have no energy. I'm worried about my pet scan and overall prognosis. I'm 54 but have young kids and want to be around for them.

Tim

ProustLover

Hi Tim - it's good to hear

Hi Tim - it's good to hear from you...glad you found this spot for good info and friends.  My husband finished 33 radiations and 5 rounds chemo this week, and you seem to be on the same track recovery-wise.  He's lost around 35 pounds since October.   Swallowing was good up until this week, when mucous set in with a vengeance.  The liquid supplements he'd been using since week #3 no longer work... they combine with the mucous into "concrete".  He's resorted to the feeding PEG, which he'd hoped to avoid.  His energy is sapped, but somewhat better now that chemo is done.   We're thinking of you and wishing the best.   Try to divert your mind from future tests.  This site has helped me to focus on "not going  there until I get there," and that what you two  guys are going throuogh now is par for the course.   

oceangoer

Thank you for your reply

I am also living off of the feeding tube as I can't hardly swallow but the muccaus is by far the worst of the side effects. That and thee fact that every other dammed commercial is about steak or a burger lol. I can't sleep at night because the muccaus blocks my airway. The only thing that I've found to help is the liquid oxicodine (spelling?) that stops it for a while so I can sleep. The best to you both this isn't an easy road is it.

 

Smile

Tim

debbiel0

oceangoer said:

Thank you for your reply

I am also living off of the feeding tube as I can't hardly swallow but the muccaus is by far the worst of the side effects. That and thee fact that every other dammed commercial is about steak or a burger lol. I can't sleep at night because the muccaus blocks my airway. The only thing that I've found to help is the liquid oxicodine (spelling?) that stops it for a while so I can sleep. The best to you both this isn't an easy road is it.

 

Smile

Tim

I had to rely solely on my

I had to rely solely on my feeding tube for 10 weeks after treatment. My  advise you , to stay on top of your hydration! I ended up hospitalized twice. Once I got my hydration/nutrition schedule worked out, the healing process moved along quickly. There have been some bumps in the road, as most anyone here can attest to, but a positive attitude and an extra glass of water go along way.

My husband cooked himself three full meals a day. I think the smell of everything delicious helped me fight for wanting to eat, so go ahead, watch all those steak and burger ads, I do believe they help. . Have to admit though... I did enjoy the reprieve of not having to decide "what's for dinner"  lol  

donfoo

you are now post!

You've come a long way, crossing the finish line although it doesn't feel that way. Many have a couple more weeks of rough road ahead but you will get through it. Each person is unique so there is no standard profile how each survivor progresses but things will improve. 

 

It's going to take time before any accurate assessment can be done. Just keep your faith and trust your team did great work and at this point you need to focus on healing and gaining your strength back. Everything else will fall into place. Look at your family and be thankful for all have everyday. 

Suez39

Swallowing excersizes

Tim did you do throat excersizes during your treatments? My speech therapist told me you have to do practice swallowing no matter how much it hurts. Also even sipping little amounts of water will go a long way in the later weeks. I drink maybe less than a glass of water a day because I'm having nausea problems. But i'm going to fight and at least try to sip water several times a day. Throat excersizes hard for me cause therapist wants 10 3-4 times daily. Does'nt sound like a lot but excersizes are hard to do. I wish you good luck in getting your swallowing back. What did your rad n chemo doctors tell you? I will be praying for you and wish you the very best. Please post back to let us know how you are doing.

debbiel0

Swallowing exercises are so

Swallowing exercises are so important! I started doing them two weeks b4 treatment started. If I miss a day, my tongue and jaw tighten up. My speech therapist was very good.  It has been 10 months now, and I dont think i have ever kept an exercise routine so long! LOL

Suez39

Excersizes

Thx Debbie10. I did some b4 treatment too bit starting tomorrow will get my trusty notebook and try to do as many as I can!! I have been reading about people post treatment that can't swallos! Scares the h*** out of me!!

AlreadyOne

It does get better

Hello, I just wanted to let you know that within about two weeks of your final treatment you will start to feel better. Everyday will be a little easier. I was about a month post when I was able to eat my first almond in weeks. So good. It is a slow process but you will get there. The feeding tube helped me a lot as swollowing became almost impossible right after treatments. At least I could keep myself hydrated and fed with ensure. Your body will heal, your tongue will heal and the swelling in your neck will go down. It does take time though. Take it easy if you can and always know that you will survivee this. I am 15 months post and feeling great. You will be there too! CT scans show that I am clear.

CivilMatt

Yes, you finished treatments (good), but you have just started

Tim,

It would behoove you to open up the positive support center of your mind and get on  the Tim Life train which makes stops in:

1. I am ok

2. the treatments worked 

3. the scans will support NED

4. losing 40lbs was good for me

5. better make plans for Memorial Day with kids

6. I will try to swallow more often and sip water every day.

7. I will taste, eat, try any and everything every day (no kidding, a taste  is such a small portion)

8. Let me see, set my body clock for (painfully, depressingly, long time) slow.

9. Accept and hear what my body is saying.

10. Be happy with small improvements

     

There, I have shared my Sunday, April 15, 2018 tips.  Now take on the day.

It is raining in Oregon today.

Matt

oceangoer

Thank you

Thank you all for your support, it's good to hear that I'm not alone in what I'm going through. I agree the flem was some of the worst. I still have it to some drgree but you're right for a while I couldn't sleep. The only thing that helped me sleep was the liquid oxicodone. That does two things it helped dry my mouth and it helps you sleep. I'm now going through swallow therapy boy that's fun lol. I have to say something about my wife though she has gone above and beyond to help me through this even when I haven't been the easiest and I couldn't ask for more. I just need to get some strength back

ProustLover

Tim - you are far from alone

Tim - you are far from alone       For me it's been a rare chance to rise to the occasion and show in action, not just words, how much I care.... not everyone has that chance, and it's a gift. Your wife knows what I mean.

oceangoer

Thank you

You are right it is a gift and I wish I was hallf the person my wife is. Her love and devotion has made me a better person I just hope it's enough

Sprint Car Dude

Sound about right.

Ocean, It sounds as like you are hitting all the great or not so great milestones. I had 37 Rads and 7 Cisplastin Tx. I am alive and feeling better every day. It took me an honest 5-6 months to start to feel like a human again. Now at about 1 1/2yrs out, I need to go on a diet. I hit the gym every day for weight training and bit of cardio. My taste changes from day to day. My salvia is starting return a little each day as well. Keep on fighting, there is a end game eventually.  It will take a few months then you can begin to find your new normal.  Good luck..

OKCnative

oceangoer said:

Thank you for your reply

I am also living off of the feeding tube as I can't hardly swallow but the muccaus is by far the worst of the side effects. That and thee fact that every other dammed commercial is about steak or a burger lol. I can't sleep at night because the muccaus blocks my airway. The only thing that I've found to help is the liquid oxicodine (spelling?) that stops it for a while so I can sleep. The best to you both this isn't an easy road is it.

 

Smile

Tim

Our's seems pretty similar. I

Our's seems pretty similar. I'm 47 and finished treatment about 6 months ago. I had SCC HPV+ BOT Stage 3. I did 35 rads and 3 big doses of chemo. I did not do the feeding tube or chemo port or any surgery.

I remember the mucous and swallowing were indeed the worst of it for me. Mucous so bad I literally could not sleep for at least a week because I had to spit every 30 seconds or so and the taste was horrible. What worked best for me (besides time) was 20+ gargles of baking soda and salt every day, this two part mix I was given by the radiation team (it's a powder in a tall and short bottle and you mix it with water and gargle - lasts about a week in the bottle). I also ordered those disposable mouth swabs from Amazon and would dip them in medicated mouth wash and really clean my mouth good. Warm salt water in the WaterPik was good too.

Swallowing was so painful my wife had to step outside when I took in calories (mostly Boost VHC) because I literally cried when I swallowed and then I'd cough up bits of bloody throat tissue. I only went through it because I didn't want any throat or swallowing issues post treatment and didn't want the issues that come with a PEG tube.

The food commercials were the worst. I literally ordered an outdoor pizza oven from Amazon in the middle of treatment. My wife just looked at me all puzzled when it arrived and said, "You can' even eat and you ordered a PIZZA OVEN?!!?" I smiled and said "I need goals!" Then we both laughed. Within weeks of treatment ending I was eating pizza from that oven though! 

I'm about 6 months post treatment and back to 100%. I was actually at 100% within a couple of months and I went through neuropathy, skin sensitivity, fatigue, turkey neck, you name it. But, they all went away within about a week or two.

Good luck to you!

Shortcut56

Esophagus Problems

I am five weeks since my last treatment and still can't swallow. Had the swallow analysis done and, sure enough, Mine doens't work. It just pushes the liquid donwn a bit and then it squirts back into my mouth. It just can't push it all the way down. Anyone else have this?? I am getting more tests  hopefully next week. Someone mentioned balloons.

 

Tallkidsmom

Hang in there .

Tim, I couldn’t agree with Civil Matt more. The next few weeks will be indescribably challenging, but will soon be behind you. I’m a year ahead of you, having completed radiation therapy March 3, 2017.  Like many things in life, there’s ebb and flow. Not every day willl be better, but over the next few weeks you’ll notice definite improvement. 

nancytc

Hi Tim,

Hi Tim,

Another one who went though the same side effects...no fun. I used a Peg Tube exclusively by week 2.(33 rads and 2 of 3 megadoses of Cisplatin). My weight went from 109 to 89 lbs. I slept sitting up with a horseshoe neck pillow to stabilize my head, and a sling around my head to keep my jaw from opening and creating dry mouth. I kept a throw up bowl, clear water, baking soda water, and salt water next to me in the bedat all times, as if the phlem built up on the back of my tongue I would throw up. I remember about 3 weeks of spitting every couple minutes/24-7 and gagging the phlem out. It was definitely the worst side effect of the treatment. Sleeping was in 15-30 minute increments. I was so scared that it would never go away. My world got VERY SMALL during this period. But in time, it did SLOWLY get better. I got my Peg out 5 months after treatment ended. It was very hard to eat and took a lot of dedication and smoothies to get me back on track. I am now a year out, still NED and eating most foods again. Taste and Saliva maybe 50-60%. Im back to the gym trying to pack on muscle and back to my normal weight. I heard someone describe the healing progress as a glaciers pace...about right! Hang in there! It does get better!!!

Nancy

oceangoer

Thank you all

As if the treatments and side effects weren't enough I've been through two episodes of having the flu, one put me in the hospital for a week right in the middle of treatments. I also had Pnumonia that time the second was this past week. I had gaind a couple pounds and poof... lost 6. I do feel like I'll never be better right now and it hurts to feel that way. Nacny I was just like you described at night throwing up and gagging constantly. This is awfull. I just want to scream but even that would hurt