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After two weeks of treatment -

mohawk66
Posts: 15
Joined: Apr 2013

I'm feeling more tired today than I expected. I was hoping I would "bounce back" this weekend more than I have. I finished 2 weeks plus a day of radiation on Friday. My mouth is drier and my throat has periods of pain, but not too bad so far. I'm already tired of being sick and tired and still 5 weeks to go.  

I'm getting treatment on my vocal cords because the left cord is involved with the tumor and my voice is strained and raspy day to day. I saw the ENT on Friday and he said the tumor is definitely shrinking, the treatment is working. He said the tumor is no longer visable around the vocal chord.

A few days before treatment started I had an incident of difficulty in breathing which resulted in a trip to the emergency room and an overnight stay for observation and treatment with steroids. Half the treatment team recommended a trach and the others said no, go ahead with treatment and get the trach later if necessary. Ultimately that was our decision. Otherwise treatment would have been delayed 2-3 weeks to allow the trach to heal and get simulated again.

I'm hoping the fact that the tumor has shrunk and is no longer visable relative to the left vocal cord is a good sign that there won't be swelling there. This week will be tell the tale and I'm hoping and praying to get through without the trach.

Otherwise the week has been a success. I'm staying well hydrated and kept my weight up, might have even gained a pound or two. Last night I tried out the feeding pump and it worked great. Having heard some stories of difficulties in eating later in the process, I'm really happy to have the feeding tube available. 

You all really helped me get focused last week. I still find myself projecting out about possible outcomes by am getting better about reeling myself back to today.

Thanks for all your presense and support!

Marty

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Like the movie...same thing, day, after day, after day, after day.....

Hang in there Marty..., it's going to get better, just in a long boring stretch where you are right now...

Keep pushing the fluids, calories, and positive thoughts..., the rest will follow.

Best,

John

mohawk66
Posts: 15
Joined: Apr 2013

Thanks John. Love the Groundhog Day thought! THis morning at rads I was hearing Sonny and Cher singing "Babe"!

Marty

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Babe...., LOL...

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

You got to take it just one day at a time.  I'm sorry to tell you that you are entering the phase of your treatment where "bouncing back" might not be realistic; at least it wasn't for me.  Fatigue is just part of the package.  Just go with the flow and remember this is a short term, big bump in the road you just have to get through.  

We are here if you need some help or just hit a day that you need to vent.  I did it all the time and I felt better every time because of the folks here.

Joe

phrannie51's picture
phrannie51
Posts: 3638
Joined: Mar 2012

fatigue is just part of the package....it's hard for many of us to just relax, and accept that (I kept thinking I was being lazy...and beating myself up for it)....but I finally accepted that yes, this is a real illness....that my body was being wrung thru a wringer, and how I felt was just how I felt....no apologies.

I love John's "groundhog days".....cuz that just what they were.....I had favorite parts of every day...mainly haing rads behind me for another 24 hours....weekend were wonderful, with 2 days off.  Be kind to yourself, do what you body tells you, and remember this ain't a cold or the flu.....you've got a number of weeks still to go.....one foot in front of the other, one day at a time (tho you sound like you're really catching on to that one Smile....good job!!).

p

mohawk66
Posts: 15
Joined: Apr 2013

Thanks for the affirmation. Today I'm starting an energy management plan to try to stay busy but not burn out. I'll let you know how it goes!

Marty

HobbsDoggy
Posts: 165
Joined: Feb 2013

Some go though treatment without much more problems than you are having now.  Still most of us got fairly beat up so at least be prepared.  It could be very rough, but it can be done and is worth the grief.   For me it was very helpful to ask any and all question I had on here to keep my hope up. 

Fatigue was a real problem, and to some degree, 4.5 + months out still is an issue.  Gets a little better each week, slow but sure.

MarineE5
Posts: 747
Joined: Dec 2005

Marty,

I can understand the frustration of being tired from the treatments. I played my own little mind game on myself. I was warned that the Radiation would work on me and cause fatigue, so I made it a point to drive myself the 30 miles each way daily. Once I got home, I went outside and chopped wood until I was even more tired, that only took about 10-15 minutes.  Now I had a real reason in my mind to take a nap, not the cancer or treatments, but chores made me tired.

My Best to You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 2873
Joined: May 2012

Marty,

Nice to hear you are doing well.  Bouncing back over the week-end, I tried that too.  Your fatigue is a good indicator and how hard treatments are on your body.  I did a lot of sleeping in the afternoons. 

Stay upbeat and take the side effects (if) they come.

Matt

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Sounds like you are weathering the storm pretty well. I also thought there might be a feeling of bouncing back on a weekend but Saturday and Sunday just didn't seem enough. In the middle of tx, I probably slept 20 out of 24 hours. It was a sound sleep too, maybe the pain meds. Six weeks post tx, I had all of my energy back. Wishing you an uneventful week.

Candi

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Just look at it like you are only five weeks from kicking "c" to the curb and meeting NED!!!  :)  Wether it gets worse or not (prayers your side affects are minimal) ...just keep pluggin along as you are, stay hydrated and stay busy (or sleeping which is what I did a lot of) to keep your mind off all the negatives! 

I think it's great you may have gained a pound.  Don't use that feeding tube unless you need to and even if you do end up using it, keep up the swallowing exercises my friend!

Best,

Tim

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I can so relate to you in many ways. My SCC was vocal cord also except mine was on the right side and I had node involvement too. My voice was very hoarse and 9 months out I'm still raspy. I've been going to speech for quite sometime and it does help.
I can also relate with the groundhog day treatment. I actually used to check each day off on the calendar and I'm not sure if that made it better or worse??
I'm glad you can still eat by mouth but I'm happy you have the PEG just in case. Due to the swelling in my throat I needed mine and was so happy when I got it because I'm thin to begin with so the losing of weight was freaking me out!
Try and stay hydrated, keep swallowing and get rest!
Billie

mohawk66
Posts: 15
Joined: Apr 2013

Thanks, Billie. I'm still eating fairly easily, if I keep the food soft and take with liberal amounts of liquid. Even so, the activity of eating is a huge focus because my appetite is no what it was before. Like you I'm pretty skinny already so the PEG tube is a huge comfort knowing I can take nutrition that way when the time comes.

Marty

mohawk66
Posts: 15
Joined: Apr 2013

Hi Tim: 

Thanks so much for the positive thoughts! I'm eating 2,000+ calories a day just to keep my weight up. It's hard because things don't taste right andall the water I need to get the food down fills me up fast.  I'm thinking of using the PEG to augment even though I"m still able to eat, because I'm thin already and the demands of eating wear on me.

 

Regards,

Marty

debbiejeanne's picture
debbiejeanne
Posts: 2305
Joined: Jan 2010

tim, what is ur new pic of?  i can't make it out.  it could just b my bad eyes tho  Cool

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

Hi Marty,

 

I'm just  a week ahead of you, finished 3 weeks of rads and chemo last Friday, heading into week 3 of rads. I had induction chemo for 9 weeks preceeding the CRT and had that time between infusions to catch up and my body did do that - got weight back and recovered from fatigue, mouth sores, and such.

As was mentioned before, I am finding there is not periods to catch up as radiation is a constant daily deliverer of injury to your neck and throat. If you receive chemo weekly, then there is little time to recover between infusions. If you are on a 3week cycle, then maybe your body can heal some from the chemo. I know I could recover during the 3 week infusions cycle. It may be different with chemo infusions with rads; I have heard multuiple times that chemo mixed along with rads do create more side effects than if delivered along.

I'm posting each week or two so you can keep up on my progress but I suspect the storyline is going to be quite similar to many of those having crossed this battlefield before. Good luck, don

mohawk66
Posts: 15
Joined: Apr 2013

Don, thanks I look forward to sharing you experience. I admire your positive outlook and wish you the best.

Marty

yensid683
Posts: 225
Joined: Apr 2012

...in the 'not so bad' zone, but I recall being in a similar state about 2 weeks in.  I was starting to feel it, my throat felt sore but not all that bad, saliva was reduced and I was still able to eat, but now softer and wetter foods.

For me it got worse as treatments progressed.  Thoat pain came on stronger after the next two treatments and I had to start using the pain meds that my RO had prescribed, so no more driving for me (buzzed driving is still 'drunk' driving) and fatigue started to hit pretty hard.  After each treatment it fell like I'd fall asleep in my recliner just by sitting down in it.  I started scheduling an hour's nap after each one and it helped.  I was talking (emailing is a better word) with a friend who had rads for prostate cancer and he had the same fatigue, but found that a daily walk helped a great deal.  I'd walk a block or so with my wife, she the ever fearful one, but it helped.

So, here's hoping it does not get worse, but be prepared for the typical radiation side effects

mohawk66
Posts: 15
Joined: Apr 2013

Thanks a lot for the information. I've been trying doing a daily walk but some days I go a little too far. Before my my diagnosis I was running 3-4 miles a day so it's a little disheartening being limited to a walk around the block.  But for now I think you're right, that's the place I need to be. 

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