Hi and Hello

[christina]

Did you read my article in the newsletter also Kes wrote a good one, thought it was a very good newsletter and interesting re the vitamin c

[PSRNE30]

Hi Christina, Yes i read your article, I enjoyed it and you look fit as a lop (flea).
I was back at the Freeman Hospital on Monday for a check up with the transplant team and they have shelved my file and handed me back to my local haematology dept for monitoring.

I hope you have a brilliant Christmas

Paul

[christina]

Well done Paul am sure your going to have a good Christmas and may 2019 be a good one for you, all the very best

[DTUB10]

Sorry I haven't been in contact for a while, but I have enjoying reading all the posts today. Here is an update from me.

Since my MDS tuned into AML in October, I spent a month in hospital undergoing an intensive induction chemotherapy cycle (Flag Ida). After one week of chemo my blood counts dropped right down for two weeks, then they miraculously started to recover at an incredible rate until I had completely normal blood counts across the board. After living with very low Hb and platelets for months, it was great to be completely free of transfusions for a while.

The bone marrow biopsy showed a complete remission, which was a great result. So after a week out of hospital I returned for the same again - another month of consolidation chemo, to drive the AML even further into remission.

I am fortunate because my body stood up quite well to the first cycle and so far I am coping well with the second cycle, apart from a couple of rough days. My platelets dropped right down to 9, so yesterday I had my first transfusion in over 4 weeks. In a week and a half my counts should bounce back and I will have another BMB before being discharged.

The next step will be the work up for a stem cell transplant at Hammersmith Hospital. I am told that a few possible matches have been found.

I suppose I was lucky in that the search for a donor was already on before my MDS changed to AML, so I will only going to need three cycles of chemo in total before the SCT.

I know that developing AML was a setback, but at least I feel that something has been done at last to fight the blast cells in my bone marrow and it was wonderful to experience normal platelet and Hb levels again.

[HPLE99]

Hello. My name is Harry and I've registered with the site as my wife was diagnosed with MDS in 2017 and with CMML a few months ago. Prior to that it was thought the joint and muscle pain symptoms were rheumatological but the specialist then signed her off and over to haematology.

She is currently in Leicester Royal for the fourth time, the last three occasions being spread over the past 6 weeks or so. She has the symptoms of disabling joint pain in shoulders and hips, which are the most annoying out of the range of tiredness (anaemia), loss of appetitie, dramatic weight loss, bruising and petechiae etc. She has had quite a few bags of red and one of platelets after a single course of low dose chemo.

The thing taking her back to hospital repeatedly, however, is temperature spikes which have crossed the 37.5 threshhold and on two occasions have gone far over that and have made her curl up with shivering and feeling dreadfully cold. It's a frightening sight.

Anti-biotics do not seem to be controlling her temperature in the way they should if it was just a bacterial infection so she has now been put in quarantine with a suspected viral infection. More investigations under way.

She is 73 and so there will not be a bone marrow transplant. Until this struck she was always very active on a daily basis and had almost zero health problems.

Once she's released it would be good to attend a meet-up but there seem to be so few of us that meetings are rare and at some distance away from where we are, just to the West of Leicester.

Thanks

Harry

[MollyP]

Hi Harry
My husband has CMML, although from what I can gather not the popular version, he's now 70, had it for about 7 years. For the most part he's been reasonably OK so if you can I would get on and make the most of the good times whilst allowing for a few days rest in between. I have found in the past couple of years everyone now on the Facebook group but I am not keen on posting there, although I do have a read through occasionally. We went to a London meeting a couple of years ago and it was very good but on the whole my husband tries to forget he's got it so thus its me on here and not him.
Hope your wife feels better than she has been very soon
Regards
Molly
Xxx

[HPLE99]

Thanks for your reply Molly, it is much appreciated.

Bad news today with report that the latest bone marrow test shows blasts have gone from 4% to 8%, so here I am at 2.30am wide awake and trying to think of what to say and do next.

Best regards

Harry

[chris]

Hi Harry
I used to be a very frequent visitor to this Forum when I was first diagnosed with CMML in 2008. I experienced a lot of the same symptoms as your wife when it first kicked off so I can feel her pain, as it were.

No wonder you are awake worrying In the middle of the night. I hope that there might be a treatment plan which makes her feel more comfortable soon.

Here's a link to information on CMML from Leukaemia Care and I hope that helps.

Take care

Chris

https://www.google.com/url?sa=t&source= ... 6953306303

[chris]

Don't think that link any good. Try this. If not go to leukaemia care website and search for CMML!
CHRIS

https://www.leukaemiacare.org.uk/suppor ... leukaemia/

[christina]

Hi Harry hope by now Molly is a lot better, I'm the same age as Molly and my MDS was diagnosed in 2009 and transfered to AML last May, I'm still under King's but having my treatment at my local hospital in worthing west sussex, my bmb in May showed 24% blasts but after 9 cycles of azacitadine its down to 4% so keep positive as its possible for things to change with treatment and time, will be thinking of you. Chris nice to read your message, hope all is well with you and may 2019 be a healthy one for everyone Christina (Tina)