Okay, I know it's important not to panic but I am extremely worried about John's symptoms right now. He's about 7 weeks post chemo/radiation and he seems to be doing a lot worse- especially in the last 2 weeks.

Immediately after treatment he was very sick for about three weeks, however, by week 4 and 5 - his energy was steadily improving. He was strong enough to go visit friends for an hour each week and do some driving without being especially tired.

Suddenly, halfway through week 5, post-treatment, he became exhausted, his face started swelling overnight ( although people here and his doctor has explained that symptom)and his voice became significantly lower and stratchy. He saw the RO last week who said all this was normal.

But this past week he has complained of pain in his middle left-side back upon waking ( not every day but most days) and this morning he said the pain was in left chest, under his arm and in his middle back. As usual, when he gets up and walks around the pain subsides and he only has it when he wakes up.

These last few days he's mostly been exhausted(one good day in a week), having a new series of mucous attacks - similar to post chemo times- and has a small light frequent cough which he says is from the mucous. He also has stopped eating much by mouth because he feels queasy so often. He was up to about 1/3 of his nutrition by mouth by week 5 post treatment.

John has a 7 week post treatment CT scan on Wednesday with an appointment to discuss scan results a few days later.

He doesn't want to bother any of his doctors at this point because we'll be meeting with both the RO and MO in a week. But I am worried that he might have an infection. If it's something a lot worse I guess waiting wouldn't matter at this point.

Any thoughts or comments?

Mary
Bother the doctors...if for no other reason than to alleviate your fears. I know exactly what you are feeling...terror... The symptoms you are describing sound so familiar and can be caused by a multitude of reasons. Unfortunately the after effects of radiation do tend to get worse before they get better.
Call the Doc`s Mary....you know you won`t sleep for a week otherwise!

Marica

Has he had any temperature evelvation? (You should be taking it every day). I ask because Barry had a post-treatment pneumonia which put him into the hospital and he had chest pain (right side) wehen breathing, also lots of mucous (suddenly, after it had been gone for a while). It was diagnosed by xray -- a few days of antibiotics and he was ready to go home but it took several weeks to fully clear and some scarring in right pulmonary area showed up when he got the PET/CT scan.

Post-treatment infections are not uncommon, we were told, and should be treated vigorously.

Gail

Mary,
He actually sounds kind of typical at this stage but as Marica and Gail said don't leave anything to chance, infections and thrush are very common as well as a lot of nausea and nastyness. Always keep the oncologist in the loop. Constipation can cause nausea issues as well. That should get better once he's weaned off of the narcotics. It was about at 8 weeks post Tx that I started to turn the corner where I could actually feel the slightest bit of improvement. In early post Tx, progress is measured in 3 week increments. I didn't have any swelling (I did have a pretty good dewlap or turkey wattle but that has since gone away) but I lost my voice for a time and had many other issues like fluid build up in the ears. The dry mouth and mucositus are a major part of it, and can cause thrush because of the altered pH in the mouth. This treatment can really beat the crap out of you, although some have fared better than others. The techs kept telling me I was doing really well. My wife thought I was going to die!

It takes 18 months for salivary function to return after IMRT radiation. I had lots of weird pains also, mainly from muscle atrophy from all of the fatigue.

Cancer fatigue, by the way, is the basis for SSDI claims as it is a well known side effect of the treatment.

It took almost 2 years to get back to where I was in strength and function.

It takes a lot of patience at this point.

Thanks Marica, Gail and Gary. All your insightful and thoughtful comments are so helpful.

It's an understatement to say that this disease is complicated. Similar symptoms can be part of the normal healing/recovery process or they can be something more dire.

My main concern is how the last 2 weeks have been dramatically worse compared to the previous 5 so- because your good advice- John will check in with the doctor today.

Thanks again.
Mary

I'm glad he's checking with the doctor! I just wanted to second what everyone else said about not being afraid to pester the doctors, especially with symptoms that could be pneumonia. But if he turns out to not have an infection, it could also be the normal signs of recovery--there have been other people who felt better then worse for a while and it didn't turn out to be anything.

Nelie

Hi Mary
Good..glad you are seeing Doc...let us know how he is doing.
Marica

Just a follow-up because so many of you were kind enough to post to my question.

John went to the doctor today and they found what they called a "pretty bad yeast infection" in his throat. I guess this is similar to what some people here have had although most of what I have read on this site is about thrush on the tongue.

After 10 days of declining energy, he actually woke up feeling more energetic today and now has a prescription for meds for the yeast infection which should also help things. The radiation oncologist told him the yeast infection could make him feel pretty sick, given he is still only 7 weeks post-treatment. The early morning mid-back pain on left side was attributed to coughing from the extra mucous brought on by the yeast infection.

Always takes me a while to get used to these reasons given by the doctors for particular symptoms, but I do feel relieved.

Thanks so much to everyone who shared experiences and information. You are truly wonderful.

Mary

Mary, Recently, I had thrush on the mouth and in the back of my throat. It was pretty awful and I am 7 *months* away from radiation. My sympathies to John but I'm glad that it wasn't anything worse.

Nelie

Yeahhh Mary
Thats great news!

Cheers
Marica