Treatment Completed, Next Steps

Gemma579

I finished my 6 weeks of treatment recently.  Things weren't really too bad until the end of the third week; however, that did not compare to how I would feel the 4 weeks after treatment had ended.  It was horrible!!  As I'm sure you are all familar with.  They told me, after treatment, it would get worse before it got better, and boy were they right. 

I am now 5 weeks post treatment and am finally starting to feel somewhat human again.  Not much pain, except during bowel movements, and I can tell the stomach lining is still irritated as certain foods and drinks make me feel sick, I also continue to have daily bouts of fatigue.  The doctor has told me that since the radiation targeted the entire pelvis area (to include the lymph nodes) that it may have caused damage that would prevent my blood counts from ever being normal again; thus fatigue forever??  Has anyone heard of this before?  I was also told that the lining of the anal canal may also never be the same, it could be very thin, so I could be on stool softeners for ever.  Just a few things that I wondered if anyone has experience with.

Initially, my biopsy was to be one month after the last day of treatment.  Now they are going to wait 4 months after the last day of treatment, because the chemo and/or radiation contines to work in your body during this time.  How long after your last treatment was the biopsy taken?  How long after your last treatment was the port removed?

 

 

ACinNC

Fatigue

Your doctor telling you that your blood counts may never be normal again due to radiating the entire pelvis is definitley not my understanding  of what to expect.  Blood is made in the bone marrow of multiple bones that would not have received radiation.  How low are your counts now?  Unless your counts are still suppressed from the chemo  they should slowly start to rebound.  Your fatigue could be due to the effects  of the radiation itself. I'm 5 months out and still have significant fatigue and my counts are normal. I try to exercise and get important things done in the morning while I still have energy then it's  down for a nap every day.

I just had my port removed once my followup  PET scan indicated I wouldn't need further chemo. My port was always problematic and because one could always be placed if future needs dictate, I was happy to be rid of it.  

mp327

Gemma579

I'm glad to hear you are beginning to feel better.  It takes awhile!  I'll try to answer your questions, based on my personal experience.

Blood counts:  Mine were out of whack for quite some time after treatment, especially my white blood count.  Fortunately, everything has returned to normal, or at least it was at last check.

Lining of the canal:  Yes, the radiation does damage, including thinning of the lining of the intestinal tract and anal canal.  This is why some people continue to experience occasional bleeding with BM's, including me.  The lining is easily irritated and since the blood vessels are closer to the surface, when stool passes through, the bleeding can occur.  I know it's scary, but it's quite common after this treatment. 

Radiation continues to work up to 6 months, so I'm glad your doctors are holding off on a biopsy.  Some doctors do not do them, including mine, so I've never had one routinely post-treatment just to see how things are.  I'm over 9 years post-treatment now, so I'm glad I didn't put myself through that.

My port was removed about 3 months post-treatment.  However, some people, at the advice of their physicians, keep theirs much longer.

I'm sure others will add their comments and some of what I've stated above will differ from individual to individual.  I wish you all the best as you continue down the road to recovery!

Mollymaude

Gemma

My blood counts returned to normal quickly, I have not heard of a potential for them to never return to normal. Yes your anal canal will probably never be the same due to radiation damage. I can't remember when I got my first biopsy but I think it was somewhere between 1-4 months after treatment. I had a biopsy recently at close to 2 years out and after 2-3 weeks still having more rectal pain and bleeding than normal. In the future I am going to be pretty firm about them not doing a biopsy unless absolutely needed because I've had three so far and I don't like the healing up period. It seems to start of a cycle of rectal muscle spasms that last for weeks after, plus the continued bleeding. I got the port out 3 months after treatment.

Ohmy

Gemma579.....My blood counts

Gemma579.....My blood counts returned to normal quickly and my PICC line was removed one week after treatment ended.  I am having a DRE every three months.  My PET scan  three months post treatment was NED.  I have another PET scan in December.  I am not sure biopsies are a good idea unless something shows up in the PET scan or DRE.   I am pretty much healed 7 months post treatment with no pain or bleeding during BMs.

Gemma579

Thanks everyone!

Thank you all for your comments.  I may have misunderstood the doctor about the blood counts NEVER returning to normal.  A lot of info was thrown at me that day.  Your comments about not having biopsies are interesting.  I will look into this further.  The doctor had me get a biopsy before treatments started and explained that one would be done after treatments ended, all as routine procedure.

 

Yesterday, I had achy body, leg pains, and was sleepy all day.  Just felt all around cruddy!  Then had night sweats throughout the night.  This is related to the low blood counts, right?  Or maybe menopausal symptoms.  I know radiation treatments can trigger menopause, but I thought I was done with that a few years ago.  Also, I was told I am anemic, so maybe that has something to do with it.

Ohmy

I rarely had hot flashes

I rarely had hot flashes during menopause but I get them often now postreatment.  My doctor said the radiation continues to work for six months.  I noticed a big improvement when I passed the six month mark.  Unfortunately, that is also when I noticed the hip and back pain.  Another side effect of radiation.  Exercise and ginger tea relieves the pain.  Hang in there Gamma 579!  It really does get better with time.  I did not post during treatment but I read the blogs everyday on this site.  It really helped me get through the treatment.