I have just completed the third course of chemo and am waiting for side effects. In order to pre-empt these I have made some changes. Most importantly, I have reduced the dose of dexamethasone from 8, 6, 6, 2, 2 on successive days to 4, 4, 2, 2. The dex was there as an anti-emetic, but I was not sick and the side effects were fluid retention, constipation, hypertension, 5 pounds weight gain, psychiatric symptoms (high as a kite), and sleeplessness. Of these only sleeplessness has remained with the lower dose, but I have been able to rise at 5 am and get on with some work.
I have also purchased some lightweight linen gloves to wear inside to avoid the cold-induced pins and needles caused by the oxaliplatin. I am even typing with them on right now. It's a little bit clumsier and I have to make more use of spellcheck.
I am also conscious this time of acid reflux and have recourse to the Gaviscon. That is perhaps because I have switched back to ranitidine from lanzoperazole. I was worried that a PPI would leave me more at risk from c difficile. I will try switching back while I am on the steroids.
I am having a lie down after meals to try an catch up on sleep. Even 20 minutes seems to help
I find it difficult to read, which is probably the steroids. Instead I am following the narrative for several TV shows including Damages, Lost, ER, 24 and The Wire. I am not sure that I could defend my watching any of these, but for my illness, but at least they pass the time while I'm feeling too unwell to work.
Diane and I have also started a 1000 piece jigsaw puzzle. To do it on, we went out and bought a picnic table with 4 plastic seats attached. The first time we used it a small piece of plastic that was holding it stable snapped and we ended up on our backs (luckily without any of the spars inserted into our anatomy) surrounded by jigsaw pieces. The shop replaced it as faulty and now we are about halfway through the puzzle.
6 comments:
Dr. H,
There is no evidence that either PPIs such as lansoprazole nor H2 blockers such as ranitidine increse the frequency of C. diff infections.
Gaviscon is most effective at bedtime because of its coating action, but i would suggest that you reconsider bid lansoprazole (on arising and 30 min before the evening meal) as H2 blockers rapidly cause tachyphylaxis. In a pinch, addition of hs doses of H2 blockers may help the symptoms if PPIs alone are insufficient.
Avoid lying down after eating and try not to eat for at least 1 hour before going to sleep.
I hope that you soon feel better,
DWCLL
It must be quite strange to know so much about the drugs you are taking and maybe good that you know what to expect and how to adjust the dose.
The jigsaw puzzle story could have been nasty but sounds like you escaped serious side effects of jigsaws too! It would have been really irritating if you had nearly completed it.
We usually do them on the dining room table but if you need to lay the table it's a work of art to put the cloth on without destroying it!
24 as a guilty pleasure? Yep. Boy, it's violent but even my wife decided she liked it.
I've had the first season of The Wire on order from the library for months now. Hasn't come yet. Lost, I just can't get into, really.
Forced to watch The Wire? Probably one of the few upsides of your situation. Unequivocally the finest drama on TV or film that I have ever seen
Dr. Hamblin, I was adviced to eitheer contact you or one of your collegues by someone on an American v good site; CLL Topics.
Have had very bad experience re being diagnosed w CLL eventually, from Breast Cancer screening. Has bee traumatic and deneaning and terrifying. I live in Macclesfield/Cheshire and ended up being referred to a Dr. Hudson, at a Christie outreach locally. Would be v grateful for any advice and where to look, maybe whom to see. Have been told am Stage A. Had NO idea anything wrong, would probably still not have known. Probably fell "foul of" NHS targets, 14 days etc. Did not know that being diagnosed was considered Cancer treatment. Could have done without it all. This also has nasty psychiatric effects, the stress is good slimming method! The lady who runs CLL Topics, Chaya Venekat seems very human, Sorry to see you have been/are unwell. Camcer? I am also 1943 vintage. 43 years married to a Brit, Am Norwegian myself. Thanks.
Mette Esbensen-Kramer (Mrs) e-mail mette.esb_kra@btinternet.comnosesue
Hi Mette
Prof. Andrew Pettitt at the Royal Liverpool is your local CLL expert. I recommend going to the beginning of my blog where I lay down some of the principles for newly diagnosed patients. http://mutated-unmuated.blogspot.com/2005/12/what-is-chronic-lymphocytic-leukemia.html is where to start and work forwards from there. I realise that this is 4 years ago now, but not much has changed.
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