More on my ulcers and sore mouth

I found this link that shows that one of the drugs I take as part of the chemotherapy is the cause of my ulcers. Cyclophosphamide.
Read about it here
http://clltopics.org/Complications/RealPain.htm
The condition is called oral mucositis. Cyclophosphamide targets fast growing cells in the body. Cancer cells are fast growing, but so is the lining of the mouth and gastroentiral tract- your guts. So the drug attacks the lining of your mouth.
I won't go into the details. You can read them yourself. Suffice it to say that I didn't feel much like eating over the last week.

So what can be done? My doctor has prescribed a different mouthwash. I must brush my teeth after every meal and every few hours as well. I must use a mouthwash regularly. Will it make a difference?
Sadly, the evidence suggests that it doesn't
From the article:
"90 patients took part in this study. Roughly half rinsed 3 times a day with a chlorhexidine product, an antiseptic. The other half did not. The antiseptic rinse did its job, there were fewer bacteria in the mouth after rinsing. But to the disappointment of the researchers, not only did this not reduce the number of patients who got severe mucositis, there was an increased risk of mucositis in the experimental group! They concluded, this antiseptic mouthwash seemed to enhance the risk of mucositis, and its nasty side effects. Think about that as you swish away with the latest Listerine type of mouthwash.

Every oncologist and cancer hospital seems to have its own version of a "magic mouthwash". The second abstract below compared three mouthwashes, plain old salt + baking soda, the infamous chlorhexidine discussed above, and a "magic" mouthwash consisting of lidocaine, Benadryl and Maalox. Guess what, in this large group of 200 patients, there was no difference between the three mouthwashes. The researchers concluded the old wives' remedy of gargling with salt and soda water was just as good, and a whole lot cheaper."

So it seems that we're between a rock and hard place. There is a drug that offers some relief. It's called palifermin and I don't know if it's available or suitable. Other than that, the best advice on offer is to suck ice.

Tuesday August 24th

It's a week since my last post and my mouth hasn't improved so I rang the hospital yesterday and was called in for a blood test today.
I was squeezed on to the end of a very busy clinic and luckily didn't haveto wait too long before I was called.
I explained that I was going on holiday at the weekend and needed assurance that I wasn't carrying an infection that could cause problems. The doctor looked at my blood test results which were generally good, although the neutrafils were a bit low. This apparently explains why I'm getting a sore mouth. I've had a look on t'internet and there's quite a lot on the forums, so I'm going to have to read up.

He prescribed me some green mouthwash which has an analgesic effect. I have to use it four times a day for the next four weeks. I will also have to brush my teeth more often and avoid cutting my gums if I floss.
All in all it's a whole new oral hygeine regime change.

On holiday in a few days. Can't wait!
Chris is supervising the new kitchen installation while we're gone.

Tuesday 17th August

It's two weeks since I started my last bout of chemo and surprise surprise, my mouth is breaking out in ulcers again. I checked back on this blog and found that I had a sore throat/ear infection and mouth ulcers a few weeks after the last round.
I've also got a couple of saliva glands swollen up inside my mouth, under my tongue.
I'll have to keep an eye on them.

Other than that, my temperatures are good, but I'm still more tired than I expect to be. I just nod off without warning.
Part of the symptoms or just getting old?

We go away for a few days in just over a week's time. I'm looking forward to a change of scenery.

I'm looking forward to sitting on this clifftop looking out over the sea.

I wrote the lyrics to the song just before I started the first session of chemotherapy last autumn. It's on my list of songs to record once I get back to fitness.

Tuesday 3rd August

It's almost a year since I was bitten by a sheep tick, which started this whole new phase of my life. I was diagnosed with CLL last September and I was due to have six courses of chemotherapy over the following six months.
In the event (you can read all about it on this blog) I've only yesterday begun the sixth and final course.

I had a blood test which confirmed the current status of my blood cells, which have improved over the last month or so. I had my Rituximab via a drip yesterday and I've taken the first dose of the other two drugs today. I expect to be a bit low for the next week or so (although last time in May I sailed through, so who knows?)

We go on holiday a couple of weeks after that. I've been booked for another bone marrow test and CT scan in October, with another consultation in November.
The doctor seems quite optomistic about the length of remission I can expect.

In the next few months I will have to decide whether to go back to work full time or part time. This will depend on whether I can get any benefits. We will also have to look at other financial matters.

But in the meantime I can look back on a fun tour with Nicki. It was hard work at times but I wouldn't have missed it for the world. I should point out that I never received any payment at all for my services, as I considered it to be part of my rehabilitation.

The next week or two may be uncomfortable, but then I have a holiday to look forward to.