Wondering about what to expect post treatments

RaleighMusicGuy

You know what?  I am gonna make it after all.

 

My treatment at Duke Raleigh Hospital began in December 2014.  It has involved chemotherapy by portable infusion pump with the drugs 5FU and Mitamycin (?).  Also, radiation therapy was M-F.

I finished eveything one week ago today.

I'm not feeling any relief or better in any way, certainly not energy.

I would like to hear other experiences post radiation and chemo.

Many thanks.

The dream never dies . . . .

 

mp327

Post-treatment

I fully expected to feel better the day after my treatment ended, which was a "pipe dream," if you'll excuse the pun!  However, I did feel much better after about 10 days and got back to light daily exercise at that point.  My energy level was quite low in the beginning, but the exercise helped me regain strength and endurance and soon I was back to running.  My bowels took awhile to straighten out--I would say it was about 6 months before I felt comfortable leaving the house before noon, as most of my mornings were spent running to the bathroom every half hour.  My bowels were quite unpredictable.  However, with time and tweeking of my diet, I soon had more confidence and began venturing out earlier in the day.  You are not yet at the point where you should expect to feel completely normal or 100% better, but it will come.  Just be patient!  Eat lots of protein to aid healing and drink lots of water to flush all of the chemo out of your system.  If you have issues with diarrhea or urgency, keep a food journal and see if you can identify trigger foods, so that you can avoid them.

Believe me, you will soon be feeling much better!

Martha

qv62

Raleigh

My treatment was over at the end of June, shortly after I was hospitalized for 10 days, once home I slept most of the summer away, went back to work in Sept (school system) and by mid Oct was falling on my face. I napped everyday after work and sometimes 20 min during lunch. The doctor kindly wrote me out for Wednesdays which was a BIG help, that is now coming to an end. I am now 7 months post treatment and finally getting my energy back, not 100 percent but light years from where I was. As for the bathroom, I need to know where each one is and stay close by, that has yet to get under control. I generally get up an hour earlier than I need to just to plan bathroom runs but it continues throughout the day. The doctor has me on psyllium fiber which helps a bit and they have suggested taking a half an Immodium daily but I am petrified to get backed up. Be patient it can take a while but certainly gets frustrating not knowing when you'll feel better. I surely hope it is sooner than later.

RoseC

Hi. I was lucky in that I didn't have any bowel problems right away. (They did happen some years out though.) After treatment, I felt very tired. I had been working 40 hours/week but went to 20 hrs/week around week 4 of treatment and stayed there for a few months. I had some complications due to the mitomycin so my experience is not the norm (who's is?). But I can say that for a few months after treatment, I was very tired. Had to sleep a lot. Rest all you can. Sleep when you're body tells you to. For now, you are the most important thing in the world. Try not to worry about the outside world. Rest. You're body's been through a lot.

RoseC

qv62 said:

Raleigh

My treatment was over at the end of June, shortly after I was hospitalized for 10 days, once home I slept most of the summer away, went back to work in Sept (school system) and by mid Oct was falling on my face. I napped everyday after work and sometimes 20 min during lunch. The doctor kindly wrote me out for Wednesdays which was a BIG help, that is now coming to an end. I am now 7 months post treatment and finally getting my energy back, not 100 percent but light years from where I was. As for the bathroom, I need to know where each one is and stay close by, that has yet to get under control. I generally get up an hour earlier than I need to just to plan bathroom runs but it continues throughout the day. The doctor has me on psyllium fiber which helps a bit and they have suggested taking a half an Immodium daily but I am petrified to get backed up. Be patient it can take a while but certainly gets frustrating not knowing when you'll feel better. I surely hope it is sooner than later.

Immodium

QV, don't worry too much about the Immodium stopping you up. I worried about the same thing, but it didn't happen. It slows the digestion so things don't go through too fast. Try taking 1 every other day to start. I hope it works for you - it helped me, a lot.

jcruz

post-treatment

My experience is much as the others reported.  I actually felt the most sick the week after treatment ended and then could feel myself getting better a little bit at a time.  I was beyond fatigued and in quite a lot of pain despite continuing to take oxycontin for 3 months after tx.  I didn't go back to work until 4 months after.  I definitely didn't bounce back.  But I did get better.  I'm just past 2 years, still occasionally have periods of fatigue and periods of chemo fog.  Happy to be in remission.

RaleighMusicGuy

mp327 said:

Post-treatment

I fully expected to feel better the day after my treatment ended, which was a "pipe dream," if you'll excuse the pun!  However, I did feel much better after about 10 days and got back to light daily exercise at that point.  My energy level was quite low in the beginning, but the exercise helped me regain strength and endurance and soon I was back to running.  My bowels took awhile to straighten out--I would say it was about 6 months before I felt comfortable leaving the house before noon, as most of my mornings were spent running to the bathroom every half hour.  My bowels were quite unpredictable.  However, with time and tweeking of my diet, I soon had more confidence and began venturing out earlier in the day.  You are not yet at the point where you should expect to feel completely normal or 100% better, but it will come.  Just be patient!  Eat lots of protein to aid healing and drink lots of water to flush all of the chemo out of your system.  If you have issues with diarrhea or urgency, keep a food journal and see if you can identify trigger foods, so that you can avoid them.

Believe me, you will soon be feeling much better!

Martha

Many thanks

Martha,

 

Thank you for your encouraging and informational words. 

 

(I don't know what is going on with the font.)

TraceyUSA

RaleighMusicGuy

I am almost 2 years post treatment.  I seemed to rebound fairly quickly as soon the the treatments ended but keep in mind that the radiation is still working in your body for months after the treatments stop.  I did not have the long-term fatigue that others experienced but the frequent and urgent BM's still bother me.  It has improved immencely but I think it's something will always be.  I had some neurophathy in my legs and tightness in the hip and thigh muscles for quite a few months post treatment and it took a while for my hair to start coming back.  I think you should start feeling better this week or next, it's a slow process but you'll be back to the new "normal" before you know it.  Congrats on finishing treatment!

qv62

RoseC said:

Immodium

QV, don't worry too much about the Immodium stopping you up. I worried about the same thing, but it didn't happen. It slows the digestion so things don't go through too fast. Try taking 1 every other day to start. I hope it works for you - it helped me, a lot.

RoseC

Thanks I will give it a try, thanks for the encouragement

RaleighMusicGuy

TraceyUSA said:

RaleighMusicGuy

I am almost 2 years post treatment.  I seemed to rebound fairly quickly as soon the the treatments ended but keep in mind that the radiation is still working in your body for months after the treatments stop.  I did not have the long-term fatigue that others experienced but the frequent and urgent BM's still bother me.  It has improved immencely but I think it's something will always be.  I had some neurophathy in my legs and tightness in the hip and thigh muscles for quite a few months post treatment and it took a while for my hair to start coming back.  I think you should start feeling better this week or next, it's a slow process but you'll be back to the new "normal" before you know it.  Congrats on finishing treatment!

Many thanks

Tracey,

 

Thank you for your encouraging words. Feces has leaked from my rectum literally all day.  I have been through about 15 Depends today alone.

My stomach is still churching, so I'm guessing this is not over.  I sure wish it was.  I am exhausted and this had been a very long, tiring day.

 

Thanks again.

judyv3

RaleighMusicGuy said:

Many thanks

Tracey,

 

Thank you for your encouraging words. Feces has leaked from my rectum literally all day.  I have been through about 15 Depends today alone.

My stomach is still churching, so I'm guessing this is not over.  I sure wish it was.  I am exhausted and this had been a very long, tiring day.

 

Thanks again.

RMG

Wish I could give you a gentle hug.  The two weeks after treatment ended were terrible for me.  But once I started feeling better I improved pretty quickly.  You WILL feel better.  I am sending positive healing vibes to you.

 

Judy

0626june

RaleighMusicGuy said:

Many thanks

Tracey,

 

Thank you for your encouraging words. Feces has leaked from my rectum literally all day.  I have been through about 15 Depends today alone.

My stomach is still churching, so I'm guessing this is not over.  I sure wish it was.  I am exhausted and this had been a very long, tiring day.

 

Thanks again.

Music Guy

when I had that "leaking" experience, it was caused by the opposite of what I would have thought....I was actually constipated, and the leakage was the only stuff that could get around the blockage so I had to do some enemas in the ER during treatment.  That stopped that, though 7 months post-treatment, I still have to locate bathrooms and stay close, no matter what I'm doing. 

RaleighMusicGuy

judyv3 said:

RMG

Wish I could give you a gentle hug.  The two weeks after treatment ended were terrible for me.  But once I started feeling better I improved pretty quickly.  You WILL feel better.  I am sending positive healing vibes to you.

 

Judy

Judy

Judy, a hug woud be nice.  I am touch deprived.  Thank you for sharing your experiences and sending positive healing vibes my way.

 

Michael