Question about recovery after radiation / what is normal

Hey guys,  I just joined to tonight but have been following you all for a bit now.  I was wondering if I could get some thoughts from you guys who have been through this.  

My Dad was diagnosed with stage 3/4 in July.  2 1/2 inch tumor (yes inch not cm ;-), everyone asks that) that extended to his stomach.  Some stuff 'lit up' on liver (but dr's have been vague at best) and had traveled to at least 2 local lymph nodes and looked like a few in his neck.

Initially surgery was an option, then (with no other info. then same pet-scan) it wasn't.  We did Chemo, which he responded very well to!  He finished radiation a month ago and it has totally beat him up. He is a month out but seems to be getting much worse 'side effect' wise.  Still not eating, down to 113 (this is a 200 lb man, only 60), lost all feeling in his feet, can barley walk - just not doing well.  

The dr's keep saying it is normal - and yes we knew there would be side effects but this is crazy.  

So for those who have done radiation for this cancer, is this normal?  I'm very concerned because he can't seem to swallow (sometimes even water).  It is even worse then it was when he was diagnosed.  

I'm affraid this is a sign of something - not good -

Anyway, sorry for my rambling - I'm just at a loss.  Any help would be awesome! 

Jamie 

Hi Jamie, My situation was different because I had surgery first followed by chemo and 5 weeks of radiation.  I don't know if the situation you describe is normal, but I can say that recovering from the effects of radiation is very slow, and in my case the effects were worst in the weeks just after the end of radiation treatments, but in time I recovered.  Of more immediate concern is whether the troubles with your dad are related to dehydration.  If he can't take in enough fluids and gets dehydrated, this really affects how a person feels and makes it harder to eat.  By the fourth week of radiation I was getting so nauseous and dehydrated, I started getting saline injections at the infusion center three times a week, and this continued for several weeks after the end of radiation until I was able to eat and drink better on my own.  For me this was a life saver, and I would feel better right away.  So if this hasn't come up in discussions with the doctors, I would get them to explain either why it isn't necessary in this case and try saline injections to see if it helps get through this hardest period.  Best wishes, Rick

I am not sure what to tell you.  I had chemo/radiation simultaneously.  By 3 weeks out from finishing the treatment I was feeling much better and went to surgery on the 4th week. Radiation builds up in the system so it is possible he could feel worse, but it does seem like he should be getting some relief by now.  Is he drinking enough water to flush it out?  I had a feeding tube also and got plenty of fluids that way.   I did experience neuropathy (soreness/pain) in the feet and ankles, etc.  In the beginning it is difficult and I experienced a lot of trouble with it.  Even after 8 years when I first get out of bed in the morning my feet don't want to work too well.  Thankfully after a trip across the bedroom my feet work very well now.

Best wishes to your Dad and you.  I hope others give you some insight.

I don't think there is a normal since everyone responds differently to these procedures.

In my son's case, he had chemo and radiation at the same time.  The radiation made his throat completely raw and almost impossible to swallow anything.  Between the two, his body was ravaged and he, too, lost lots of weight.  After surgery he was doing somewhat better.  Two months later, just as he was beginning to get back on his feet, he was diagnosed with a recurrance.  More chemo and this time they were able to radiate a different area.  Although he was still sick from the chemo, the radiation didn't seem to be as big of an issue as the first round.  He didn't have any numbness, but he was sore in all his joints for quite some time.  He kept his feeding tube in place for a year and a half but the last six months he didn't feel he still needed it.

It's such a long healing process.  I hope your dad starts feeling better soon and is able to start swallowing.  My best to your dad as well as you and your family.

On Jan 26, 2012 5:00 AM jamiegag wrote:

Hey guys,  I just joined to tonight but have been following you all for a bit now.  I was wondering if I could get some thoughts from you guys who have been through this.  

My Dad was diagnosed with stage 3/4 in July.  2 1/2 inch tumor (yes inch not cm ;-), everyone asks that) that extended to his stomach.  Some stuff 'lit up' on liver (but dr's have been vague at best) and had traveled to at least 2 local lymph nodes and looked like a few in his neck.

Initially surgery was an option, then (with no other info. then same pet-scan) it wasn't.  We did Chemo, which he responded very well to!  He finished radiation a month ago and it has totally beat him up. He is a month out but seems to be getting much worse 'side effect' wise.  Still not eating, down to 113 (this is a 200 lb man, only 60), lost all feeling in his feet, can barley walk - just not doing well.  

The dr's keep saying it is normal - and yes we knew there would be side effects but this is crazy.  

So for those who have done radiation for this cancer, is this normal?  I'm very concerned because he can't seem to swallow (sometimes even water).  It is even worse then it was when he was diagnosed.  

I'm affraid this is a sign of something - not good -

Anyway, sorry for my rambling - I'm just at a loss.  Any help would be awesome! 

Jamie 

 Jamie, Thankfully cancer did NOT kill me but I thought the radiation would! Like your dad, I lose 60 lbs. in 7 weeks. Couldn't down a tablespoon of water without throwing it up. No energy to do anything at all. No taste. Tons of mucous. I was awful. I finished radiation in August 2010, and I remember going on a mini vacay with friends about two months later still feeling awful (and mad about it!)  Still couldn't eat much. No energy. No tastebuds. Everything tasted like dry card board. You improve ever so slowly from radiation. It was exactly as I was told. One day out of no where you realize, "Hey, I am starting to feel human again." So give him time. That is alot of weight to lose in a short amount of time, and his body simply has to catch back up. Long, slow, healing. Hard to be patient, but I will pray for you that it comes to him. 

Four years out of radiation this month. Last month I had a cat-scan that finally showed a little improvement w/ saliva glands. Dry mouth, jaw pain, tooth aches. All are still here, but being alive makes these things not such a big deal. I lost 60 pounds which was 40 more than I had to lose. But now I have put it all back on and actually have to diet. lol.

It is a long process and there is no normal. Just go w/ the flow.

Hi Jamie, I am one week out from last of 35 rad treatments and three rounds of chemo simultaneously.  The radiation builds up and keeps on giving even after you stop treatments.  This past couple weeks have been more severe than others.

I was diagnosed with Squamous-cell carcinoma of the tonsil and the pain from radiation to my throat is incredible. I had surgery to remove tonsils then started treatment. My pain meds reduce the pain but do not eliminate.

I lost taste at 10 days into radiation. I have lost about 30 pounds. I have a PEG and do not use it enough. The fluids fill me/bloat me and I can only take in so much fluids. I try to do at least 3 cans of ensure and add a scoop of protein (27 grams). I probably do not get enough fluids.

After my last chemo Doc began saline via IV two times a week. It’s a godsend!!

Again, since last week, I have been VERY fatigued. I sleep a couple hours in the morning, 3-4 in the afternoon and have no trouble sleeping 8 hours overnight. Sleep is when the body recovers. Sleep is good. I will pray for your dad and your family.

On Jan 26, 2012 5:00 AM jamiegag wrote:

Hey guys,  I just joined to tonight but have been following you all for a bit now.  I was wondering if I could get some thoughts from you guys who have been through this.  

My Dad was diagnosed with stage 3/4 in July.  2 1/2 inch tumor (yes inch not cm ;-), everyone asks that) that extended to his stomach.  Some stuff 'lit up' on liver (but dr's have been vague at best) and had traveled to at least 2 local lymph nodes and looked like a few in his neck.

Initially surgery was an option, then (with no other info. then same pet-scan) it wasn't.  We did Chemo, which he responded very well to!  He finished radiation a month ago and it has totally beat him up. He is a month out but seems to be getting much worse 'side effect' wise.  Still not eating, down to 113 (this is a 200 lb man, only 60), lost all feeling in his feet, can barley walk - just not doing well.  

The dr's keep saying it is normal - and yes we knew there would be side effects but this is crazy.  

So for those who have done radiation for this cancer, is this normal?  I'm very concerned because he can't seem to swallow (sometimes even water).  It is even worse then it was when he was diagnosed.  

I'm affraid this is a sign of something - not good -

Anyway, sorry for my rambling - I'm just at a loss.  Any help would be awesome! 

Jamie 

Hi Jamie, I am on this post board as "Loving Mummy" as my son is going through the same phase. You can read about his case when you get a chance and today I was rather more disturbed as he is having pain on his right side abdomen and feels pain all over his body too.

   I  read about your dad's case and felt sorry to find that he is in more pain. I wish him ease in pain as well as sure cure after the treatment.

  My son has taken the chemoradiation therapy very well. He started loosing his hair after his 3rd round of chemo...he did suffer mouth rash, no taste of food, not being able to gulp even water without pain forget about solid food but eventually he could eat off an on...I don't undertand how that can happen, i.e. at one time he can not seep water and at times he can eat normally though he could not stand tinginess of yogurt, black paper even a light sprinkle on his food, he would eat food with just a little salt or sweetetness. He loved sweet dishes but lost that taste too! Anyway, so I was searching causes what might be causing him such pain.

On Jan 24th, I just came home to AZ after 3 months with him at Atlanta.  GA. When we left Atlanta,  he was not having this complaint, so am feeling so frustrated not being near him.

He will be going for surgery after the 6 weeks of recovery period and we (parents) will attend over there during and after surgery.

   Your dad finding more difficult to dring water after radiation  I can very well relate as my son also complained the same. The radiologist gave explanation that when radiation is given the inner linning of esophagus is literally bruised and causes inflamation just as we get a cut or wound would cause inflamation. The passage becomes narrower and swallowing becomes painful.

Having MORE pain in swallowing after the radiation treatment can be considered normal , I hope my explanation makes some clarification to you.

Love and regards,

Loving mummy

On Jan 26, 2012 5:00 AM jamiegag wrote:

Hey guys,  I just joined to tonight but have been following you all for a bit now.  I was wondering if I could get some thoughts from you guys who have been through this.  

My Dad was diagnosed with stage 3/4 in July.  2 1/2 inch tumor (yes inch not cm ;-), everyone asks that) that extended to his stomach.  Some stuff 'lit up' on liver (but dr's have been vague at best) and had traveled to at least 2 local lymph nodes and looked like a few in his neck.

Initially surgery was an option, then (with no other info. then same pet-scan) it wasn't.  We did Chemo, which he responded very well to!  He finished radiation a month ago and it has totally beat him up. He is a month out but seems to be getting much worse 'side effect' wise.  Still not eating, down to 113 (this is a 200 lb man, only 60), lost all feeling in his feet, can barley walk - just not doing well.  

The dr's keep saying it is normal - and yes we knew there would be side effects but this is crazy.  

So for those who have done radiation for this cancer, is this normal?  I'm very concerned because he can't seem to swallow (sometimes even water).  It is even worse then it was when he was diagnosed.  

I'm affraid this is a sign of something - not good -

Anyway, sorry for my rambling - I'm just at a loss.  Any help would be awesome! 

Jamie 

Hi Jamie, If you think it not normal, keep asking the drs, the questions or get another opinion. The chemo (hated with a passion) lost 70 kilos, with radio on top of it, had problems with eating and swallowing (even liquids) so used a thickener to thicken my water or liquids, which worked for me, normal liquids just sent me into coughing fits. My diet consisted of anything that could be thickened and had to be smooth e.g custard, jellies etc.. Radio for me was was okay, except for redness, (like really really bad sunburn) Swelling in my hands and feet went down after two months of radio and chemo finished. But 4years later I have numbness in my toes and fingertips and 40 percent loss of hearing on one ear. Hope all goes well with the rest of his recovery. Positive thinking,