CMML specific messages

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VBWV16
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Joined: 20 Aug 2019 16:08
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Re: CMML specific messages

Post by VBWV16 » 21 Aug 2019 10:03

Hi. I'm Vanessa and I joined the support group yesterday!!! My husband Brad recently got diagnosed with CMML back in June. As you will appreciate we have been on an emotional roller coaster since then. At the moment he is at stage 1 and is being treated with hydroxycarbomide tablets. His prognosis for transformation is 18 months. However we found out on Monday he is being put forward for stem cell transplant. So good news in one way but a very risky procedure that he is prepared to take. Another roller coaster lies ahead in the months of treatment and uncertainty. For now life carries on as normal if that's possible. He is self employed and continues to go to work. I'm a primary school teacher so making the most of the school holidays which has given me time to browse any support groups out there. CMML is quite a rare disease so it's good to know we are not alone they're are others out there that we can communicate with. We are trying to stay strong and positive and we are determined to try and beat this. Brad is 62 and he said he would be happy with another 10 years. So fingers crossed ill let you know how we get on! 😀
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: CMML specific messages

Post by chris » 22 Aug 2019 22:26

Hi Vanessa
Thanks for posting. I can totally sympathise with how you and Brad must be feeling. It's quite a shock to get that diagnosis. CMML is even rarer than MDS and that is a little-known bone marrow disease. I spent years going to MDS UK meetings, trying to meet somebody with CMML without success!! But recently, there have been 2 people with CMML in my own support group in Essex! Maybe clinicians are getting better at diagnosing it?

Take a look at Molly's posts. Her husband was successfully treated with hydroxycarbamide and is still doing well. Even within CMML, there are huge variations. Mine is the MDS type but Brad's is the myeloproliferative type. Does he have an enlarged spleen? I do - even though it's uncommon in the MDS type! Not fair!

I hope you soon have a clearer idea of future treatment. Do you have a local MDS support group near you? I'd recommend going along and meeting other people with MDS. It does help alleviate the feelings of isolation when you have a rare disease. Also, do call Sophie if you have any questions.
I wish you both all the best as you begin to deal with living with CMML.
Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
VBWV16
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Joined: 20 Aug 2019 16:08
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Re: CMML specific messages

Post by VBWV16 » 10 Sep 2019 17:54

Hi Chris
Thank you for your post its so comforting there are people out there who really understand what we're going through. Life is still relatively normal although I'm back at school and I'm exhausted after only 10 days back. Brad exhausted but that's down to the blood cancer. We have both noticed the fatigue seems much more severe and he needs to sleep a lot more. So lots of early nights and snoozes when he can get them in. We are continuing to work on weight gain for Brad so this involves my highly calorific and full fat smoothies that he drinks most evenings. Sometimes it feels like this is not really happening and then you suddenly realise this is real and is not going away. So we continue to live each day as it comes and stay positive.
Kind regards vanessa
christina
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Joined: 07 Mar 2013 11:22
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Re: CMML specific messages

Post by christina » 10 Sep 2019 20:02

Hi Vanessa just read your message and you seem to have the right mind set, to stay positive is so important and to be supportive will be such a help to your husband, I wish you all the best from someone who was diagnosed ten years ago and has been through different treatments, and thanks to the wonderful staff at Kings and my local hospital have been able to lead a fairly normal life, keep strong best regards Christina
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