CMML now advanced to AML

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Peterh17

CMML now advanced to AML

Post by Peterh17 » 13 Aug 2013 18:23

After less than a year on watch and wait my bloods started to move with Neutrophils, and WBC going out of range, in addition to the low platelets (67) and high monocytes(2.5). After discussion with Sophie, I asked my consultant at Watford if I could be referred to Kings College Hospital under Professor Mufti's team. An excellent referral letter resulted in an appointment and full blood and marrow tests at KIngs. From these tests it emerged that the CMML had now advanced to Acute Myeloid Leukaemia with blasts suddenly increased to 30%. Intense Chemo has been recommended with ultimate stemcell transplant. Watford is doing the chemo and Kings the transplant.

I have been wonderfully encouraged by all NHS staff and particularly by the Kings team who said that although I was 65 I would be a good candidate for stemcell transplant as I am medically and physically 'fit'. I really didn't think that a transplant would be an option. I have also been told that there are 3 potential donor matches - none are family members :D

I start chemo on Thursday as an in-patient for 4 weeks and am totally positive about the whole thing. I believe that the early advance to AML, whilst an initial shock, is good timing as I will be younger and fitter than if the advance was delayed for a year or two.

I know that the treatment will not be pleasant but other people cope with a lot worse so I will do my best and aim to keep a smile on my face at all times - albeit sometimes it may be through gritted teeth :(

Amazingly, I still feel fit and well and hope (expect) that the itching I often get will disappear with the chemo treatment.
Mym
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Re: CMML now advanced to AML

Post by Mym » 13 Aug 2013 20:34

Just wanted to say Good Luck Peter. I hope that everything goes well for you and am glad they found donors for you. I do not have MDS but my husband was diagnosed earlier this year and is on the 'watch and wait' process. Take care of yourself. Emily
chris
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Re: CMML now advanced to AML

Post by chris » 13 Aug 2013 21:10

Hi Peter

So sorry to hear how things had taken a downturn for you but also glad that Kings have been so positive about a stem cell transplant for you. As you know, I also have CMML and am on active monitoring but also having these nagging feelings about missing the transplant boat - I am currently 63 and quite fit and healthy and do have a sibling match.

I do wish you well and hope that the pre-chemo is not too distressing and that all goes well with ther transplant. Do keep us all updated with your progress - warts and all - yes and wouldn't it be great to get rid of the itching!!!

Take care

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
Peterh17

Re: CMML now advanced to AML

Post by Peterh17 » 13 Aug 2013 23:10

Thanks Mym and Chris for your kind responses.

Chris, it's good to hear that you have a sibling match. You are still younger than me and if you are fit and well, should you need to receive active treatment in the future, it is my hope that everything will progress as required.

I will try to keep in touch and report on progress, which WILL be encouraging - I am determined!
MollyP
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Re: CMML now advanced to AML

Post by MollyP » 14 Aug 2013 20:14

Dear Peter
I just wanted to wish you well with everything you are about to go through. My husband has CMML and is a similar age to yourself and on watch and wait.
I have had chemo myself a few years ago and can appreciate how difficult it can be, I found eating with plastic knifes and forks really helped with the metalic taste in the mouth, the heavy duty picnic ones are really good and I kept them in my bag when we were out. Also providing you are not allergic to it fresh pineapple helps too.
Sending you big hugs
Molly
Xxxxxx
*** *** *** ***
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)
Peterh17

Re: CMML now advanced to AML

Post by Peterh17 » 15 Aug 2013 13:10

Thanks MollyP for the advice, really useful and I love pineapple. Crystalised Ginger is also good as an anti-emetic. However, having just had my first two doses of chemo this morning I am feeling fine and cant wait for lunch - EARLY DAYS! They are giving me plenty of pills to minimise side-effects etc.

So I'm on the road to recovery - it's my Everest and I am climbing, with my heavenly Sherpa to help me :)
Peterh17

Re: CMML now advanced to AML

Post by Peterh17 » 19 Aug 2013 22:28

Well, 5 days into my treatment and things are going well. Staff are brilliant. Have had plenty of anti-fungal, anti-sickness, anti-nausea and anti-biotics to keep side effects at bay. Still another 5 days of treatment then whilst my immune system is at its lowest it should start recovering to a remission. Still feeling very positive. So far, it's nowhere near as bad as I thought it would be - early days though but I am confident.
chris
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Re: CMML now advanced to AML

Post by chris » 20 Aug 2013 12:00

Dear Peter

Glad it has all started well. Keep away from germy people!

Kind regards

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
Peterh17

Re: CMML now advanced to AML

Post by Peterh17 » 06 Sep 2013 18:00

Hi all, day 24 of treatment. Had 10 days of intensive chemo. After which my white cell levels are supposed to drop to zero. I am there now. I have had no side-effects at all and have felt fit and well throughout - although I did have a couple days during which I was having 3 doses a day, when I felt slightly nauseous and no appetite. Was very lethargic last night and got a high temperature. blood cultures taken and antibiotics and paracetamol pushed through my line and today temperature down and feeling fine. Hope to be discharged in a weeks time, then 2 weeks respite and back for another 4 weeks. I'm keeping smiling - I'm going to beat this.
punda milia
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Re: CMML now advanced to AML

Post by punda milia » 08 Sep 2013 20:12

You have done so well with great courage, Peter. I am sure you are an inspiration to us all as we face the future with its differing challenges. Thanks so much for keeping us in touch with your progress. :P

We will be thinking of you as you return home for respite. We will all be hoping that you will soon to be able to get your life back on track.

With best wishes

Diana Lockyer
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
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