1. < Head & Neck Cancer

Post Treatment Questions: low RBC and dealing with throat pain

Posted by rakga @rakga, Jun 2 4:34pm

Hi everyone,

My husband completed 7 weeks of Cisplatin and radiation on April 5th. As expected the first several weeks after were the worst but he has been steadily improving since. His first ENT appt went well and there was no visable signs of remaining issues and his PET scan is scheduled for the 24th.

There are two items that I would love your experiences with, please:

His white blood cell counts have improved dramatically and are consistently in the normal range now. However, his red blood cell counts are still low and are not rebounding quickly. His oncologist doesn't seem overly concerned and just said that it will take time. How long did it take you or your loved ones to begin to see improvement there?

The main item that he is worried about is that he is still having quite a bit of throat pain when eating. Thankfully he has been able to move away from his PEG feedings to fully eating and drinking by mouth again but after 8-10 bites of food, his throat is extremely painful. The pain passes after 15-20 minutes but has been consistent and not improving. Again, the doctor says it takes time but I think the fact that he isn't seeing any type of improvement week over week is concerning him quite a bit. What has your experience been?

Otherwise, he seems to be doing well. He has regained 2-3 pounds so far (he is down about 45 from the treatment) and his color is returning. He is now able to taste most foods to some degree with chocolate and things like BBQ sauce still not working yet. He is having some pretty profound hearing loss from the cisplatin even though the doctor was extremely aggressive with fluids throughout. We have an appt tomorrow with another audiologist to see which hearing aids may work best for him.

What a journey this has been and continues to be. Praying for good news for my birthday on the 24th which is when his PET scan is. Thank you for your thoughts!

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 21 2:54pm
In reply to @cris2 "My husband’s pet scan was good , now have an appointment with ent. He still didn’t..." + (show)
@cris2

My husband’s pet scan was good , now have an appointment with ent. He still didn’t gain any weight and he’s eating good and in between too. The dr said to see a GI specialist maybe there’s a reason he’s not absorbing nutrition. Have you heard of that? You seem to know a lot so thought I’d ask. Thanks.

Jump to this post

I'm not a doctor, just a patient. I know of patients that were slow to gain weight, myself included. In my case my thyroid was bruised by the radiation, which throws off the TSH levels and causes all sorts of angst with the endocrine system. Your husband will likely get a blood panel to see where the issues lie. Keep at it. We are our own best care advocates. We really don't want to learn what is wrong with us at the autopsy.
P.S. I was 99.9% sure his scan was nothing to worry about. It's that gosh darn 0.1% that dogs us for years and years.

REPLY
1 reply
cris2 | @cris2 | Jun 21 3:22pm

That’s for sure, thanks!

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davehutsell | @davehutsell | Jun 22 8:46am

I am a year out of the same treatment your husband had. Your description brings back memories. My advice is to consume what works for him. For me it was another 3 months of Hi Calorie Vanilla boost. I worked my way into mixing mashed navy beans into cream of chicken soup thin enough to drink. From there I worked my way to well steamed veggies covered with olive oil. I still crave zucchini squash that way. To this day, olive oil is my best friend in swallowing. As I said I am a year out and am very happy with my progress. I think just stay at it and be patient and he will get much better in the not too distant future.

REPLY
cris2 | @cris2 | Jun 23 4:54pm

Did anyone take any supplements after treatments? The oncologist here said just get what you need from food( as long as you’re eating everything) I thought maybe some supplements would help my husband some.

REPLY
1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 24 7:22am
In reply to @cris2 "Did anyone take any supplements after treatments? The oncologist here said just get what you need..." + (show)
@cris2

Did anyone take any supplements after treatments? The oncologist here said just get what you need from food( as long as you’re eating everything) I thought maybe some supplements would help my husband some.

Jump to this post

If you think supplements would help, there are a few multivitamins out there which are easier to swallow as they are in a dosage of two tablets and/or twice a day. This makes the physical size roughly half the standard size primarily in diameter.
Many Phyicians and pharmacists often tell us to simply cut a large pill in half (usually with a pill cutter) however, doing so does not decrease the diameter, only the length. The diameter is the swallowing issue.
Search for these smaller multivitamins by either dosage or by sound when the opaque container is shaken, as small pills have a higher pitch sound than big clunky tablets do.

REPLY
1 reply
cris2 | @cris2 | Jun 24 12:43pm
In reply to @hrhwilliam "I'm not a doctor, just a patient. I know of patients that were slow to gain..." + (show)
@hrhwilliam

I'm not a doctor, just a patient. I know of patients that were slow to gain weight, myself included. In my case my thyroid was bruised by the radiation, which throws off the TSH levels and causes all sorts of angst with the endocrine system. Your husband will likely get a blood panel to see where the issues lie. Keep at it. We are our own best care advocates. We really don't want to learn what is wrong with us at the autopsy.
P.S. I was 99.9% sure his scan was nothing to worry about. It's that gosh darn 0.1% that dogs us for years and years.

Jump to this post

He’s going on four months after treatments and still don’t have energy back, is that normal? He feels he’s not getting better. They been checking bloodwork and thyroid is normal.

REPLY
1 reply
roblem | @roblem | Jun 24 1:35pm
In reply to @hrhwilliam "If you think supplements would help, there are a few multivitamins out there which are easier..." + (show)
@hrhwilliam

If you think supplements would help, there are a few multivitamins out there which are easier to swallow as they are in a dosage of two tablets and/or twice a day. This makes the physical size roughly half the standard size primarily in diameter.
Many Phyicians and pharmacists often tell us to simply cut a large pill in half (usually with a pill cutter) however, doing so does not decrease the diameter, only the length. The diameter is the swallowing issue.
Search for these smaller multivitamins by either dosage or by sound when the opaque container is shaken, as small pills have a higher pitch sound than big clunky tablets do.

Jump to this post

When I take my pills for a couple of the ones that always seem to get stuck in back of my throat or esophagus, I take a couple bits of a banana after to help push it down. Also, taking you pill with apple sauce too might help it slide it down. Been golden for me, it was offered by my speech/swallowing therapist.

Hope this helps.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 24 8:40pm
In reply to @cris2 "He’s going on four months after treatments and still don’t have energy back, is that normal?..." + (show)
@cris2

He’s going on four months after treatments and still don’t have energy back, is that normal? He feels he’s not getting better. They been checking bloodwork and thyroid is normal.

Jump to this post

It took me about two years to where I felt I was recovered as well as I could be. Even at six months I had limited energy but I began to put weight back on.
Radiation recovery is very slow.

REPLY
cris2 | @cris2 | Jun 25 7:45am

How was his pet scan, hopefully everything went good.

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