After fruitless injections of Erythropoietin, which did nothing to raise my HB of 86, my Haemotologist has just started me on Hydroxy, as my white cell count was rising and at present is 47. I am waiting for the results of a BMB and trephine, but apparently my counts were such that we could not wait to start treatment. I am exhausted and lacking energy, and itching like mad. Can anyone suggest the best cream to use for this dreadful itch - I have tried Anthisan cream but it doesn't help that much.
I have also been told that I must not sunbathe, although I can walk about in the sun! What strength sun blocker is advisable? This all all very depressing, but I am trying to stay positive, whilst dreading what the BMB is going to show.
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skipperL
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Hi Skipper, sorry to hear you are feeling so rough, hopefully the Hydroxy will help a lot. You are right about the sun, I was told very strictly that I must not sit in the sun, must cover up at all times and always wear high factor sun cream, factor 50 being the recommended. It's a pain but worth it to stay safe. Good luck for the BMB results, best wishes, Frances.
Thanks for the advice Francesb. Off to the shops now to get my Factor 50 - as we shall be in the South of France over Easter I will just have to get used to sitting under an umbrella - perhaps I'll read a good book! I am rather hoping that I won't hear the results of the BMB until I get back.
Thanks - I have packed the Factor 50 - yuk! Ready to go next Wednesday - blood tests on Tuesday before I leave - so we shall see if the Hydro has had any effect.
Hi Skipper. I'm sorry to hear of your journey so far. I started on Hydrea in late November and leaned on the wonderful support of this group. My experience was some initial nausea but that soon went and it's been plain sailing since (he says crossing fingers etc). I live in Australia, so understand your frustration re the sun. Cover up (long sleeved shirt and hat) use a strong sun block and you will be fine. The biggest learning for me with Hydrea was keeping myself hydrated. - still a work in progress.
Thanks for the advice Kinsale - I well remember the strength of the Australian sun when holidaying there - I don't think the sun is Europe is ever that strong - however, I am going to cover up with the Factor 50.
Hi Skipper, My wife started on Hydroxy about 3 months ago, first few weeks she was drained in the afternoons and evening's, she is having her blood count checked every 4/5 weeks or so and last blood levels holding their own so Doc reduced her Hydroxy medication by 25% a week, we have also started taking long 3 to 4 mile hike's at the weekend, and there has been a marked improvement in her energy level's through the week, so much so she is chomping at the bit to get out every week-end, luckily at the present time she is having no side effects, exercise has defiantly improved her condition, best of luck, hope this help's.
Hi peharris - good to hear that your wife is doing so much better. I have been feeling really drained and can do nothing except lie around on the sofa. A three mile hike is completely out of the question - not that I have ever managed anything as strenuous as that anyway. However, today as the weather is so beautiful I am going to attempt a stroll round Kenwood House in Hampstead - where there are lots of benches to collapse on if needed! All the best to your wife for a continued improvement. I will be having new blood tests on Tuesday.
Hi Skipper, Perhaps my description of a "hike" is a little exaggerated, we take long stroll's around our local reservoirs around Woodhead, which is fairly flat, we have extended the distance a little each time with the return walk included in the three miles in a kind of "manageable chunks" thing, but eventually strung together in one, my wife is 67 yrs young and also asthmatic, so we do take little breaks as we go and as you say the weather help's, also help's to set achievable target's for each individual, bench to bench maybe? your own pace is the best pace, very best of luck with your blood results when they come back.
Glad to hear your 'hikes' are just strolls! I managed short distances this morning - not quite bench to bench, but there was a lot of sitting involved !
Hi I am newly diagnosed with E T was quite shocked. I am over 60 always been quite fit and healthy, it's good to hear your wife is feeling lots better. I have been taking hydroxycarbamide now for 4 weeks, feel tired but still play tennis. I am 500 mg what is your wife taking now, good to hear they have reduced the dosage
Hydrea increases your risk of skin cancer, so you must use sunblock religiously. Don't even get me started on the fatigue! I'm a 41 year old mom with 2 young boys and hell! Hydration and moderate regular exercise (and naps!) help. I also found a largely plant based diet to be helpful - putting living energy into your body.
And don't underestimate the depression that comes with this. Sometimes we psych meds, which can make the world of difference.
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