How am I doing so far?

Curlyn

Hi All, my second time trying to post a thread, so hope both don't show up. I am in 4th wk of chemoradiation and looking at advice to carry me through the last 2.5. I have no ng tube and am this week drinking 5 boost/ensure + h2o per day. Meticulous mouth care, but a few small ulcerish areas controlled c 2% lidocaine spot treatment, tylenol, and 3-4 dilaudid per day (1mg). Sleeping well. Neck looks a bit reddened but no breakdown. Hardest part is coming off steroids after ea weekly cisplatin rx. My chemo doc saidhe really doesn't need to see me until 2 months out now because doing well. See rad doc every wk. Have 13 more rads and 2 more cisplatin. It's a tough rx and I didn't want it. But your kind advice got me this far. I found a physio to treat my shoulder, doing swallow, jaw and neck exercises plus light wts. My hair on one side along neckline gone and some falls out daily. BUT I made a stew for hubby today! Any encouragement or feedback welcome, I have to get through the next 2.5 wks. Oh, am maintaining wt so far. Thank you!

CivilMatt

A+

Curlyn,

You actually sound like everything is working with you.  The small sores are normal and yours are not too bad, great.  No tube, but you are managing.  Remember, from here forward can be the worst time, so, get those calories any way you can.  Small sips all day long is ok, just try to get enough.  And stay hydrated.  Nutrition and hydration are your biggest partners, try to stay friends.

The neck is something to watch, there are good products for neck burn, but you are not there yet.

Most importantly, how was the stew?  It paints a picture of you managing this mess very well.  Keep it up.

Best of luck.

Matt

Curlyn

Hi Matt, the stew was a great

Hi Matt, the stew was a great success! I am trying to sip something most of the time. I think when I don't feel well it is due to dehydration.

bebo12249

You’e Probably doing better

You’e Probably doing better than most of us at this intersection. Stay on course.. bill

Curlyn

Thsnk you Bill. I dreamed of

Thsnk you Bill. I dreamed of stew all night. Got up this morning and forced real food down. Soft things but froze my mouth well and took metoclopromide prior to. You people are a lifeline.

Dean54

Was wondering how you were

Was wondering how you were doing Curlyn since I hadn't seen any posts from you lately. I just finished my 3rd week of rad and have my next chemo tomorrow morning (2nd) and like you, I'm drinking Ensure everyday plus the nutrionist gave me some free samples of some stuff called liquid hope that is really good to drink down since I can't hardly eat anything solid.

I've lost a total of 16 lbs since the tonsillectomy and hope I don't lose anymore, back to exercising everyday altho that will stop for a few days after the chemo because of the nausea. Hard to believe how far we've came along but seems like an eternity left to do also. Hang in there and I'm right behind you!

caregiver wife

Managing

Wow!  This should be written up as "How To Do Everything Right!"  Ditto, everything Matt said.

Hubby really struggled with the "Roid Rage".  Doc gave him lowest dose of steroid, and the nurse and I adjusted his meds to get through those days.

Sending hugs,

Crystal

Curlyn

Hugs Crystal, hi dean. Pretty

Hugs Crystal, hi dean. Pretty sore tongue this morning but par for the course. I have been doing exercises c my home gym set up, dean. It helps. Haven't lost wt if any but I have to stay on top of it. We can see the home stretch now, dean. Good luck, I think of you when I have my treatment and send positive thoughts your way. Have a great day everyone.

Andy13460

2.5 to go

All sounds good I gave up normal foods last 3 weeks of treatment and most of the first 2 weeks after, ended up using 8 125ml shakes with everything in (2200 calories) it was just easier.

Walked evey single day that was important to me to get regular exercise. Mouth wash bread soda/salt and the exercises. Neck only got sore outside on the last 4 rads. Drink water all the time never stop it works wonders, sip sip sip. Im 16 weeks after treatment and the hair the radiation got on the neck line is now back. Once out of treatment class the next 3 weeks as if your in treatment you wont get wound up about sudden improvements then. Positive attitude goes a long way in this game an I will do attitude makes so much difference, dont listen to negative people ever. Good luck with everything. 

Sprint Car Dude

Awesome.

Sounds like you are crushing your treatment plan. That is a good thing. Just keep moving to doing your thing right up until the point that you're mind and body tell you to slow down and recoup a little. Towards the end of this course of treatment your body will be fighting so hard to protect you that you will need to repay it with lots of rest and water. Wishing you continued success.

OKCnative

You sound like you are doing

You sound like you are doing well. Keep a positive attitude and just realize that the next few weeks can be a sudden escalation of side effects. It can bring you down if you let it, but just remind yourself that thousands of other people have already experienced this exact same path and came out very well on the other side. I'm 5 weeks out from treatment and things are very good - have my taste buds, have saliva, I work everyday and my sense of humor is back (so I'm told).

The no feeding tube can be a challenge. I didn't have one and getting the Boost down was not easy for about 2 weeks, but then it got suddenly very much better. Plus, you'll be better for it when treatment is done as you're using your throat throughout this process. Good luck to you!

Curlyn

Thank you! So close....

Thank you! So close....

JNiven

Nice to meet you all

Hi, Jud up in Canada. What a great thread, I am glad I found this discussion, nice to know there are others that are there or have been there. I feel I know enough right now to be dangerous.  This is a great thread as I am just about to start chemo/radiation next Tuesday. I am going to take things a day at a time and have been keeping a positive attitude. I am however feeling slightly overwhelmed with what appears to be a long list of things you need to do on a daily basis to manage all the things that could happen.  

caregiver wife

JNiven said:

Nice to meet you all

Hi, Jud up in Canada. What a great thread, I am glad I found this discussion, nice to know there are others that are there or have been there. I feel I know enough right now to be dangerous.  This is a great thread as I am just about to start chemo/radiation next Tuesday. I am going to take things a day at a time and have been keeping a positive attitude. I am however feeling slightly overwhelmed with what appears to be a long list of things you need to do on a daily basis to manage all the things that could happen.  

Welcome..

.. Niven.  Any relation to David?  Sorry, bad joke.  Glad you have found us.  This is an excellant group.  Sounds as though you are pretty well informed.  "Overwhelmed"...Hmmm, weren't we all!  One day at a time.  Take advantage of all resources along the way, including this group.  

Wishing you all the very best as you embark on this journey,

Crystal

Klingels

One day at a time

That is exactly how my husband got through treatment and the first 7 week’s post treatment.

Curlyn

Welcome Jud, It is extremely

Welcome Jud, It is extremely overwhelming! I was scared but the people on this forum helped tremendously. You can do this. One day at a time (I fully appreciate this phrase now, as well). PS. My husband found tasty turkey and rice soup for me tonight- I ate it (soft).