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Concerned after haemo. consultation

I spoke to my haemo. Yesterday and she said that HU appears detrimental to my bone maaqrrow. To stop Hydroxy for a week. White cells are high. She thinks it could be because of this nasty virus a lot of us have had. Also, I'm anaemia - maybe post virus.MY previous platelet count was 430 but are now 232 She wants another BT and will ring me next Monday. Told her of my fatigue and loss of weight and appetite and can walk T best 300 yards but she didn't respond to that. Should I be concerned? Yes I am and am running on the spot. Any comments or thoughts would be very welcome. I hope you are all doing well - or the best you can and send my very best wishes to you all. Mary

I have

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Hi Mary, the viruses going round are really nasty so your body probably needs time to recover from that first. Try not to worry (I know that’s nearly impossible when you are in that situation) but you will make yourself worse if you tear yourself up with anxieties beyond your control.

I had a nasty virus which has hastened my blood getting thicker so I’ve got a venesection this week plus the doc wasn’t sure for a start if it was a virus or appendicitis - it really was a nasty one which resulted in me getting emergency blood and urine tests and I’ve to get more follow up blood tests too. I’m anaemic just now and with a venesection looming, I’m going to be worse soon.

Sending you a load of E hugs. Thinking of you, try to take one step at a time , soon everything will be back to normal. Keep in touch Aime xx😺😺

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Sending Prayers

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Aime ,sorry you too are unwell, hope you soon are back to your always so positive self. e hugs and the very best for recovery.xxxSally

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Thank you Sally. Hopefully I’ll feel better after a venesection this Friday. At least that will take away the fatigue, the headaches and ocular migraines which I think are making me feel a bit nauseous. Hope you are feeling ok yourself. Kind regards Aime xx😺😺😻😻

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Oh no Aime, hope the venesection does the trick. Sending you healing e-hugs.

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Thank you.xx hope you're ok.xx Aime

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Hi there, you are having a rough time, when the staff who see you dont know about all the potential symptoms it makes you more anxious than you need to be .

This linkbmccancer.biomedcentral.com is is very informative and hopefully will make you feel empowered.Good luck

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Good morning,to you too.

Some times the team appear to be going backwards with the fix it programme and appear to be doing it different.

It is all about balancing your condition and some times we travel on a different route.

I have found that my immune system gets depleted at times so I try to keep myself fit and healthy.

You don't say where you are, I have a clinical nurse specialist who I can contact if I have concerns.

As they are the ones with the knowledge it's there decision.

It's about fine tuning your treatment to suit you.

At least they are monitoring you closely.

My consultant said to me in the beginning, this is infinitely manageable once the levels find their point.

Be advised and keep positive.

Regards Roger 41.

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HI, thanks for your reply. YOu say your immune system needs looking after so you try to keep fit and healthy. Do you take any supplements?I can't walk more tha. 200 yards and my appetite is almost non existent.Any tips please. Thanks. Mary

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Mary ,sorry you are suffering.

I recently had to stop Hydrea as all my counts were out of control.

To cut a long story short ,I am now on Ruxolitnib,which amazingly brought all to normal except platelets which fell to the floor...now on 1/2 the original Rux dose,just a week tho ,so not feeling good at all,

I hope you soon get things sorted,e hugs from me. A fellow miserable M P N ear !!!xxxSally

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Hi Inca. THanks for your reply. My haemo. Has refused to change my meds.to anagralide because she says side effects are pretty nasty. Am probably over-reacting. My stress levels are through the roof . As an example, my phone has died - 4th time have had to go back and change it. No big deal people would say but it's times like this when I climb the wall.Have had nearly 4 years of infections with no support and I know my. Body and system are depleted. Am nutcase really but am so tired everything is magnified. So from one. Miserable MPNer to another I hope you manage to get some results from your new meds. Life's a bitch ain't it.All good wishes and please let me know how you get on. Hugs and good wishes. Mary

The

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Absolutely Mary,

Stress is a sod,but how do we not get stressed with such a rotten maladie

that really not many Drs are au fait with it or sympathetic either.

I do have Meds to help me keep calm,but really they don't help that much.

I drive my poor hubby mad,and small upsets feel like massive problems.

You are not alone. Sallyx

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Hi Sally and Mary, I’m on sertraline which calms down the anxiety that all the unknowns cause and allows me to be more matter of fact. I think my poor GP was getting desperate when he suggested it but it has helped a lot with moods and worries.

Kindest regards and E hugs to you both Aime xx😻😻

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Is that seratonin booster? Mine is..I took myself off it thinking I was becoming dependent,I'm back on it now as Dr says it is important to feel better in myself.Will take a while to boost me again....the low platelets are making me incredibly weary,can hardly keep awake!!!xx

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Hi Sally, I’m not sure if is a seratonin booster. It certainly makes me feel better and more able to cope with the ups and downs. It’s also worth having a look at moodgym.co.uk which teaches self help techniques for feeling down. I learned that what you’re thinking affects what mood you feel - probably obvious to most but wasn’t to me! I try to think of my grandkids or another happy thought like how well my kids have done and it works for me. I also make myself watch a children’s hospital programme or similar to remind me how lucky I am in my own and my family’s health.

Sorry to ramble on, hope this helps. Kindest regards and E hugs Aime xx😻😻

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Hello Aime,

I definitely will try mood gym,I do look at Patient Power,there are gentle yoga meditation things on there which I try.

I agree that being in the right mood affects how we face the day.

If I am in my studio , I am so much better...still get very tired but it's a different tired to house work jobs and food shopping!!

So many people are much worse off than we are I know.

We just have our daughter,no grandchildren,she and Partner are well involved with work,he racing cars,she is event management,

horses and dogs too take up their life!!! Too late now anyway!!

Thankfully she gets to us very often and we manage to get to U K at least once a year....now I am rambling!!

You keep well I think I have had a better day today...hopefully the Rux is working....resting now but will look at your advised site when I wake up ! Best to you ,ehugs,Sally

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Sorry meant to say it helps me see small problems as small problems because I was like you Sally, seeing huge issues out of small ones. Take care Aime xx😻😻

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