My husbands CMML, still very well two years on

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MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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My husbands CMML, still very well two years on

Post by MollyP » 24 Dec 2014 00:25

Having been the one looking for information in the past on survival rates and been scarred witless by what I read I thought I would write a brief summary of my husband's MDS CMML

He has the Monocyte version. He is stage 1 CMML

Discovered after a routine blood test two years ago. At the time of diagnosis it was considered as having just crossed over the line between, you have it, you don't have it. He definitely didn't feel unwell.

From Jan - Nov 2013 he was watch and wait. During this time the monocytes gradually got up to 5.
In November he was prescribed a tablet chemo Hydroxycarbamide. He felt a bit tired from taking it

By April the chemo tablets had done their job too well he was taken off them due to low neutrophil counts.
Since then the monocytes have been up again and then without any chemo dropped down again

Things that have helped us since his diagnosis.
This website and the unfailing support from those here.
Getting a referral to Kings and having additional specialist care from the docs and specialist nurses.
Going to the London patient meeting, meeting others with CMML

If this helps one person see some light in the darkness that shrouded my life two years ago then I will be pleased. Obviously everyone's diagnosis is not necessarily at the same stage when discovered but I do feel that the active monitoring and subsequent treatment at my husbands early stage has kept him really well enough not to impact too much now on our daily lives.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: My husbands CMML, still very well two years on

Post by MollyP » 07 Jan 2016 14:28

So it's now another year since I posted.

It's been a relatively quiet year on the MDS side of things - hubby is still in good health and on watch and wait.

He has had a couple of other issues which led us a real song and dance where we feel the MDS hampered the docs diagnosis of a bowel problem. I would strongly urge anyone with a niggling sympton to trust their instinct and insist on getting the right examinations.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: My husbands CMML, still very well two years on

Post by MollyP » 20 May 2016 01:13

I thought I would update this post again having hubby come back from the oncologists saying "I told them so".

The local oncologist my hubby sees has finally agreed that there is a direct link to the way his psoriasis flares up and the state of his blood during this time.

So we could be saying that the MDS has been present for many years longer than has been known. The elements of the bloods during the time since the diagnosis of MDS have fluctuated up and down a fair bit with a noted relation to the condition of the psoriasis.

We will still be vigilant and continue with the watch and wait status but my husband has been feeling more relaxed about his diagnosis recently and it doesn't prey on his mind so much.

He did recently, without any success, try eliminating the nightshades family of foods, potatoes, peppers, etc from his diet, something he found on a psorisis support site.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
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