1 week post treatment

frokker68

Well, I did it.  Made it through 7 weeks of hell, but hell continues for me. I know it takes a few weeks to start feeling better, but I seem to be getting worse.  1 day after treatment I needed a blood transfusion due to some low blood counts. My throat and tongue are as sore as ever.  Then today, I had yet another blood transfusion!! 

Being told by Doc and some nurses that the cisplatin is the reason for the blood and should improve any day now.   As for the mouth, I guess I'm still "cooking" from the rads.  Should start showing improvement in a week or two.   Ugh, its so sore that it brings tears to my eyes just to take a tiny sip of water.   So I am going through magic mouthwash like crazy!  Pain meds still in full force.   

But looking at the good in all the bad,  the tumor is no longer visible and the lymph nodes on either side can no longer be felt.  Certianly the goal I was after.   My first post PET scan won't be for about 3 months so until then, I continue the journey.  Thanks for letting me vent.

Keith

CajunEagle

Keith

 After my treatment, which ended 6-6-2009 for stage IV left tonsil and back of neck area, I actually began to feel human about the 1st week of Sept of that year.  Progress was determined by how few times I threw up on a given day.  Everybody goes through this crap differently, and I really hope you get over it much sooner than I.  You will get over it.  Just keep climbing that mountain....one day at a time.  Continue to sip, sleep, and get some movement.

Larry

soonermom

Hang in there

We are 11 weeks post treatment.  The two weeks after treatment were harder for my husband than anytime during treatment.  Having said that he has made steady though slow improvement every week since that horrible two week period after treatment.  He has his voice back, has returned to work and ate part of a hot dog today! Eggs and meatballs yesterday.  He is still mostly PEG dependent but if we get a good report from his 3 month PET, we will work toward getting the PEG out.  Victory over the beast that invaded our life may be near.  Don't give up.  You will get through it.  

Engelsa

You are almost to the "it stops getting worse" line

Keith

Have your caregiver tie a big knot and help you hang on. The two weeks after treatment were by far the most severe for my husband. He required IV Fluids for three weeks after treatment and couldn't even speak for ten days. Pain meds were at their highest level the first three weeks after treatment. 

He rang the bell on May 25th, completing 7 rounds of chemo and 33 radiation treatments. He was treated for Thrush three weeks post treatment. 

My husband has been off the pain meds completely since June 24th. He is able to eat his calories most days. He had steak, medium rare, mashed potatoes, and watermelon on July 4th.

What I am trying to say is this: it truly does get easier and you will have less pain/discomfort. Hang on and when you are ready, press forward to your new normal.

All of these cancers are somewhat different and treatments are specific to each case. My husband was treated for NPC Stage IV with two lymph nodes involved. 

You made it through this horrific treatment. You will soon be looking forward to you cancer free NED!

Sara

CivilMatt

1 week post

Keith,

For you, it has been a difficult battle, it seemed you could not get a break, but all early signs are good and these seemingly nonstop side effects will soon leave you (I can almost bet on it).

Relax, and be confident in your treatment.  I don’t know where you live, but maybe you could take a walk or a sit outside and smell the roses.

Best of luck.

Matt

tbret

I got worse, too.

Keith, when I left the radiation treatment center after my 35th treatment I had not spoken to anyone for about two weeks.  I was writing notes and letting a text-to-speech program speak for me.  The staff all signed a nice note card about me being a stellar patient and all that jazz (nice touch I thought), and at the time the Radio-Oncologist said to me, "Now you can go home and curse me for the next two weeks."

I didn't understand that, then, and I couldn't (or wouldn't) speak, so I could not press her for an explanation.  I was thinking that once you quit trying to kill me with Cisplatin and stop zapping me with enough ionizing radiation to kill a smaller animal, I should get better almost immediately!  

Uh...no.  That's not how that works. 

My last treatment was the day before Thanksgiving 2016.  I was told, "You might actually want some mashed potatoes by Christmas."

No, I really didn't.

Then, later a miraculous thing happened.  Not only did I want food, but some things didn't smell or taste bad anymore.   But *most* of my calories were coming from Ensure "Enlive" for months.  I could eat, but not enough.

Yes, there are other ways to get nutrition that I did not do and I should have and I am a bad man and a lousy example and do not do what I did.

I just wanted to jump in and say that my experience was that the two weeks after the radiation stopped were the worst two weeks of my entire journey and it wasn't as though two weeks went by and I suddenly wanted to eat a horse and dance a jig.  Progress for me was slow, but the two weeks after radiation were the worst.

Hang in there.

Andy13460

Day 9 from treatment 7-7-2017

Hi Keith

Sounds like they got your bloods sorted ok after the Cisplatin and you managed to finish the Cisplatin which is great

Kepp sipping that water its worth it every sip's a swallow, getting there Keith

burns on the outside of my neck just about cleared up, stopped morphine based pain meds 3 days ago sick of them making me tired and constipated, using magic mouthwash and paracetamol. Most calories with shakes but eating soft food and drinking ok. some taste starting to come back slightly and mouth is only dry waking up on a morning, main sore areas are back of the throat and sides of the tongue (gets worse during the day). Still using baking soda/water to rinse regularly through the day. I cold never see my tumour to far back but I cant feel it anymore and my lymph nodes are flat round the jaw cant feel them either.

Starzzy

Hi Keith, it took me about a

Hi Keith, it took me about a month after radiation till I felt improvement. It does get better everyone is different. I wish you a speedy recovery. 

frokker68

Thanks everyone above.  I

Thanks everyone above.  I know I am expecting too much too soon.  Its nice to read your stories.  It puts it in prospective.  The first thing I want to do...... "Chug" a glass of ice water!!!!  Tired of tiny sips. Hahaha.  

tmchale

soonermom said:

Hang in there

We are 11 weeks post treatment.  The two weeks after treatment were harder for my husband than anytime during treatment.  Having said that he has made steady though slow improvement every week since that horrible two week period after treatment.  He has his voice back, has returned to work and ate part of a hot dog today! Eggs and meatballs yesterday.  He is still mostly PEG dependent but if we get a good report from his 3 month PET, we will work toward getting the PEG out.  Victory over the beast that invaded our life may be near.  Don't give up.  You will get through it.  

I'm with you!

My husband is also 11 weeks out! We have been through the wringer!! Ups and downs....I wish I could talk to you.

He is very hesitant to talk to anyone or even read these posts. He talks a little to our neighbors and our sons but I am his "everything"

caregiver, companion, cheerleader.... I just want him to talk to someone who has been through this!

mapdan

Good luck Keith

It will happen, give it time. Sucks right now as we all know this stage. Sounds like prognosis is good so think of that. It is miserable right now but we all know it gets better. Hell I even think I should be better after 8 months of radiation treatments

 so it takes time. Listen to these folks. I wished I had found this site at your stage. I sat and wondered what was happening and never really knew of these terrible side effects. This is the best info you can get sir. Stay focused and we are behind you!!

soonermom

tmchale said:

I'm with you!

My husband is also 11 weeks out! We have been through the wringer!! Ups and downs....I wish I could talk to you.

He is very hesitant to talk to anyone or even read these posts. He talks a little to our neighbors and our sons but I am his "everything"

caregiver, companion, cheerleader.... I just want him to talk to someone who has been through this!

PM

Send me a PM with any questions you have or he has.  You can print off our PM messages and talk about them together.  Patients and caregivers on another site suggeted that for us because we had no local support group.  Their messages/info got us through a lot of hard days.  There is nothing like talking to someone who has been there.  They gave me info to share with my husband.  He absolutely had any energy or interest in the sites.  He was and is focused on his physical recovery and basic things like eating, sleeping, self care, returning to work.  He is trying to get his life back.  Just trying to pay it forward, what others did for us.  It is a hard road.  

soonermom

tbret said:

I got worse, too.

Keith, when I left the radiation treatment center after my 35th treatment I had not spoken to anyone for about two weeks.  I was writing notes and letting a text-to-speech program speak for me.  The staff all signed a nice note card about me being a stellar patient and all that jazz (nice touch I thought), and at the time the Radio-Oncologist said to me, "Now you can go home and curse me for the next two weeks."

I didn't understand that, then, and I couldn't (or wouldn't) speak, so I could not press her for an explanation.  I was thinking that once you quit trying to kill me with Cisplatin and stop zapping me with enough ionizing radiation to kill a smaller animal, I should get better almost immediately!  

Uh...no.  That's not how that works. 

My last treatment was the day before Thanksgiving 2016.  I was told, "You might actually want some mashed potatoes by Christmas."

No, I really didn't.

Then, later a miraculous thing happened.  Not only did I want food, but some things didn't smell or taste bad anymore.   But *most* of my calories were coming from Ensure "Enlive" for months.  I could eat, but not enough.

Yes, there are other ways to get nutrition that I did not do and I should have and I am a bad man and a lousy example and do not do what I did.

I just wanted to jump in and say that my experience was that the two weeks after the radiation stopped were the worst two weeks of my entire journey and it wasn't as though two weeks went by and I suddenly wanted to eat a horse and dance a jig.  Progress for me was slow, but the two weeks after radiation were the worst.

Hang in there.

AMEN

I can only say preach it brother.  Wished we had been more aware.

MissBlueEyes4Life

This next week is my week 7

This next week is my week 7 of rad, plus i have chemo mon-wed. Also this is considered a 'boost' week for radiation, meaning they zoom in on the area.  Oh boy this is gonna be a fun week.

Gotta. Keep. Pushing. Through.

Klingels

CajunEagle said:

Keith

 After my treatment, which ended 6-6-2009 for stage IV left tonsil and back of neck area, I actually began to feel human about the 1st week of Sept of that year.  Progress was determined by how few times I threw up on a given day.  Everybody goes through this crap differently, and I really hope you get over it much sooner than I.  You will get over it.  Just keep climbing that mountain....one day at a time.  Continue to sip, sleep, and get some movement.

Larry

vomiting

Did you struggle with vomiting in the weeks post treatment? My husband is 2 weeks post treatment and still struggling to keep food down.