Hello... quick history... my dad started treatment for StageIV SCC (tonsil) on September 8th. He gets chemo one day a week and was able to complete 5 weeks of radiation (out of 8). He was doing OK - with normal side effects, especially nausea. THEN last Monday I took him for chemo and the nurse took one look at him and knew there was trouble. He was hospitalized with low WBC count, very bad mouth infections, and a 102 fever. Treatment was suspended.

Finally in the last couple days things were looking better and he was suppose to be released tomorrow (Tues.) Then things took a turn for the worst...

At eleven this morning his radiation resumed... he was doing fine (a little nauseous) until about 5 PM - he could not breathe and was trembling... turns out his heartbeat was extremely high and fever spiked again (102), also his body has swelling. They have him on oxygen and have done another chest x-ray as well as blood cultures.

Has anyone else experienced this or know of someone who has? What scares me, is that the doctors and nurses seem to be at a lose as to why he is having all these problems. (We had other problems prior to this with regards drug reactions). I'm worried he will not be able to make it through the remaining 3 weeks of treatment! He just turned 68 last week and was in great health (besides the cancer dx)before this treatment started. My 28 yr. old boyfriend could not keep up with him on the golf course! He has never been sick and would have thought his good condition prior to treatment would have made it a little easier for him. I guess I was wrong... this can knock anyone regardless. Sorry for rambling... I (we) just do not know what is going wrong. Thanks for listening!

Diana

Hi Diana,
I don't know if this will help you any but I also had some problems towards the end of treatment. I missed a few days of radiation because of nausea. I had problems with hot and cold, constipation, weight loss, dehydration, mouth sores, malnutrician, fatigue, thrush and an infection that required antibiotics (making the thrush 20x worse). I had low WBC, RBC, etc. My heart rate was elevated. My impression was that these were more or less "normal" side effects. I was also in excellent health before treatment started.
My body didn't swell up however, so that one I can't comment on.
This is a highly toxic treatment protocol. Side effects are almost inevitable.

I also never had a temperature higher than 100.5 which was the number that they told me to go to the ER if I ever reached it.

The last 2 or 3 weeks of treatment and several weeks beyond it were the worst part. It gets better after that.

Diana, to some extent,I had similar experience as your dad when I had finished 4 rounds of chemo plus 5 weeks of radiation (concurrent treatment). My WBC count was very low, high fever (over 102), weight loss, dehydration, mouth sore,... many more symptoms you can name. I was admitted to hospital on 10/12/01 for blood transfusion and antibiotic to combat pneumonia. I did not have my radiation suspended since my high fever usually disappeared early in the morning and when the nurse took my temperature, it was Ok for the radiation. So from 1/11/01 to 19/12/01, I had radiation every day except Saturday and Sunday and in the last two weeks, I had it twice a day. A very tough road for me but I managed to go through it. A delay of treatment may not be a bad thing for your dad to take a break but if the treatment is suspended for a long time, it may affect the effect but the team of doctors looking after your dad should know the best. By the way, I did not experience heart problem or short of breath mentioned in the latter half of your post and I don't think it is normal. Everyone is different and I only share my own view which is by no means professional.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks Gary and Karen for your replies. I feel a little bit better knowing he is not the only one having a tougher time with this.

I have mainly been the one taking my father in for treatment and it has been a little discouraging seeing that he looks 10 times worse than the other patients (who are also head and neck patients). Maybe the rest of them are a lucky bunch! (as far as treatment side effects. One of the radiation nurses even told us that Dad is the "worst" case she has seen, as far as nausea goes. I find this hard to believe after reading some people's experiences on this board. (Another great reason for this website!!!)

I just spoke with my mother and she said dad's fever spiked to 102.8 last night. However, his breathing was normal. She does not know yet if radiation will continue today. A resident came into his room this morning and said the heart problem was a reaction to the radiation.

Thanks again!

Diana,
I was never sick once while actually at the hospital or during actual chemo or radiation treatments. I was always sickest at home.

They have worked for years to develop powerful anti-emetic drugs (which have limited effectiveness and only work at about 60% of the time at best). So I don't know what those nurses are talking about. And they should NEVER be telling you sh*t about "..he's the sickest person I have ever seen". I'm at a loss why the nurses are at a loss. Did they just fall off the turnip truck or what?!?! Or are they recent graduates from Western Career College.

And the other "healthy" looking patients - they must be early in treatment... Give 'em time. I looked like a Nazi death camp survivor when I finished treatment but I look fine now.

I don't mean to minimize what your dad is going through. Certainly, shortness of breath, breathing difficulties and fever are serious side effects that must be monitored closely, but are not unusual.

Chest x-rays and bloodwork are SOP.

It is definitely in his favor to be able to complete treatment in a timely manner.

Hi Diana:

First off, let me apologize for my fellow professionals (or lack thereof according to your experience) in the nursing world.Most nurses have no idea the impact their words (positive and negative) have on clients and their families. Next time a nurse or other medical team member tells you "they are at a loss" or "your dad looks worse than I have ever seen", stop the person cold and tell him/her that is an upsetting comment. Sometimes, the routine of working in the radiation department makes it hard for health care workers to remember that every treatment day is a traumatic experience for patients and that's just in the waiting room!

As for the nausea, there is an arsenal of very effective medicines out there that can used alone or in combination given by mouth, patch, or by IV. The same is true for pain medications.

If your dad is being treated in a large cancer center, you can check and see if the radiation department has its own nurse practitioner and/or ask if there is a pain service and/or oncology nurse practitioner who can consult on the case. Often, these nurses are an untapped resources with alot of tricks in their bags that are helpful.

Did your dad have any blood cultures to see if he had any bacteria in his body? This condition is also called sepsis and it is a common effect of chemotherapy.

Kim

Hi Kim,

Thanks for your advice! I will check into whether they have checked for sepsis. They have been doing blood cultures quite frequently. Is that something that they test for routinely?

His latest results came back this morning with the WBC finally almost normal... however now the hemoglobin level is low. The doctor said something about a possible blood transfusion.

He is resuming radiation again today. His team really wants him to complete his treatment (and so do we!). Hopefully there will be no other heart problems. Fingers crossed!

One thing that I found odd, was that before treatment started my father weighed 170 lbs. Then during the past 6 weeks his weight dropped to a steady 157-8 (after PEG tube in place). My mom told me that they weighed him in at *175* yesterday!!! Could that be from all the fluids? We all had a good time making jokes about it, "Wow Dad, have you been sneaking out and hitting the gym again?"

Anyway, I'm off to the hospital now. Thanks everyone for your replies! I share them with Dad and they make him feel better!

Hi Diana

Hang in there - My mom had the worst case of pneumonia some of her nurses ever saw and she is coming out of it - She is now off the respirator and doing well - I hate to say all is good some of the time because we've had so many setbacks (I'm afraid things will turn bad whenever I get too happy) I'm trying to enjoy the good news this time - My mom had two blood transfusions in the past three weeks - Also, she is a bit bloated from all of the fluids - Her face actually looks fuller these days - I'll take it! You and your family have a fight ahead of you but believe it or not you can and will get through it - My thoughts are with you - Let us know how he is doing

Sue

Diana,
low RBC is normal. The radiation zaps the blood cells passing through the carotid during treatment. The red blood cells replace themselves every 120 days so the levels will return to normal eventually. If they get low enough, then sometimes a transfusion is warranted. Transfusions have their own risks. Make sure he really needs one and its not just a marginal issue.

In all fairness to the nursing profession, I doubt would have made it without the fine care I received from my advice and infusion nurses.

It still doesn't sound like he's out of the norm for this kind of treatment. Nobody ever said that radiation and chemotherapy are a walk in the park.

Are you sure they are doing blood cultures? I had many blood chemistry tests but I never had a blood culture test. They can usually infer bacterial loading via elevated WBC levels.