Topic: update on Gordon, my husband and I needs some answers IMRT

Hey guys,

I don't get on here much, but I do check in occasionally. Gordon had a spacer put in in January and is now almost finished with radiation treatments (IMRT) He is getting 100gy in the middle of the tumor and like 90 something around it..we are being told it will kill it. He was doing xylota with it but he started getting a fever so they decided to just stop it since he was almost done. So my questions are...

If you have had this IMRT treatment, is it normal to have a low grade temp, to be so tired that your in bed more than out? and to be nauseous?

The reason I'm asking on here is because the dr said he shouldn't be having many side effects, it is really frustrating. Please don't send me links to side effects because I have looked. I am baffled because the doc said that and I have talked to one patient but I want to see if there are anymore of yall out there.

Also if anyone else has had IMRT I would like to know your story. The only way my husband could have this done is by the spacer they put in to protect the stomach.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: update on Gordon, my husband and I needs some answers IMRT

We are getting ready to start IMRT with chemo at the same time of 5FU plus interferon injections three times weekly. We were told that the radiation alone could cause some nausea since the area where they are irradiating is so close to the stomach. In my husband's case it probably will be part of his stomach since everything shifted a little with his liver resection. My husband also had radiation 37 years ago with his Hodgkin's lymphoma and he said he was pretty tired through it and he could only eat just before he had his treatment.
Also when I deal with my patients who have or having radiation, fatigue can be a problem with the radiation. To me is just seems to be part of it....I mean it is radiation.
The temp I am not so sure about. I would make sure his is drinking plenty of fluids since dehydration will make you run a low-grade temp. Also can increase the fatigue levels. For the nausea if you don't have meds for nausea then I would ask for some, something like Zofran (ondansetron) or prochlorperazine that he can take. Lastly, how long has it been since his lab work has been checked such as his white count, red count and all that. He may have a low grade infection or be anemic.
If the radiation ONC doesn't want to be helpful go back to your medical Onc.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: update on Gordon, my husband and I needs some answers IMRT

Thanks, yes he has three different nausea pills and he gets his blood work done every week. They did blood cultures too so all of that is great! Were at the end of the treatment so maybe its just accumulating. Gordon is a "special case" they just rule things out. So when the drain is changed out on Tuesday and his temp doesn't go away then I sure hope it is just from the radiation because that would really scare me if we can't get this temp under control. He is 45 and was diagnosed a little over a year ago. He would get a temp from chemo but it would never get to 101. He has been on two different antibiotics this time...just weird.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: update on Gordon, my husband and I needs some answers IMRT

And yes as much radiation as he is getting near his stomach and his stomach is getting a little that makes a lot of sense.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: update on Gordon, my husband and I needs some answers IMRT

Silly, question but is he taking his nausea medications. My husband is really bad about the whole I am just a little nauseous but I don't need any meds....we battled it until I just stuck them in his pill box and he took them without question.
I understand about the "special case" that has kind of what we have been and then we also have been the if anything can go wrong it will. We battled blood infection three times after his resection. It was ugly.
Also for the temp if you aren't taking Tylenol for the temp, you may want to see if that knocks it down some. Or ibuprofen (Advil) if he can take it. It may make him feel a little better to keep the temp down.

Hope the drain change fixes things for you both.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: update on Gordon, my husband and I needs some answers IMRT

Oh yeah he takes it, I make sure. Now today we were all off and we do the Tylenol and ibuprofen regularly too. I appreciate you helping....I think all cc patients are "special cases" because there is so much Unknown still. I need to just realize that...grrr

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

7 (edited by middlesister1 Mon, 03 Mar 2014 05:03:24)

Re: update on Gordon, my husband and I needs some answers IMRT

Hi Heather-  Mom just had a radiation treatment (different- SIRT), but one thing they did state was no Tylenol.  Instead they told her to take Aleve twice a day since the Tylenol is rough on the liver.  Has anyone else been told they should avoid over-the-counter pain meds?

Re: update on Gordon, my husband and I needs some answers IMRT

Hi Heather,

My wife is finishing up her last 3 IMRT (out of 28) treatments this week.  Her main symptoms were fatigue and nausea.  The nausea was the worst however.  After the first week, she became unable to keep anything down.  She took meds and ate small meals, but it did not help much.

The only thing that ended up helping was to change to a completely bland and mostly liquid diet:  broth, popsicles, jello, crackers, and bagels.  She also had to alternate liquids and solids since combining them seemed to make things worse.  She has not been able to eat much, but it is at least staying down.  She has lost about 12 pounds over the last 3 weeks, but hopefully that is slowing down.

Anyway, I wanted you to know that Andrea has easily spent more time in bed than out, and that she is experiencing terrible nausea.  To my knowledge, she has not had any low grade fever.  I don't think fatigue and nausea are at all uncommon with IMRT.

Best of luck to you and Gordon,

Jason