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Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 21 May 2014 19:07
by Andy Pandy
Hi Folks

I had the result of my bone marrow biopsy today and was told that I have 30% blasts. I start Azacitidine Chemo on Tuesday. I feel positive about this treatment and feel well in myself at present so hope things go smoothly. I have an excellent team at our hospital and a very good specialist nurse. Does anyone else have experience of this chemo?

Regards Andrea

Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 24 May 2014 14:42
by davidmiller
I am sorry to hear your news . I was diagnosed with MDS in July 2011 confirmed in August and was immediately put on to Vidaza in September 2011. My experience is good and I am due to start my 28th cycle of treatment next Thursday. After the initial 6 months I had another bone marrow biopsy which showed a very significant improvement in my prognosis. My blasts were reduced from 10% to below 5% my chromosome 7 had been regularised ? my key indicators Hb, platelets and neutrophils had all improved and my IPSS score was down from 2 to 1.5. My situation regarding blasts has levelled out shown by further bone marrow biopsies although my platelets and neutrophils tend to bounce up and down with the treatment. Regarding side effects, my stomach tends to be sore around the points of the injections but this goes within a couple of days after the end of the cycle, some people use aloe vera cream, but I gather that ice packs can help although I do not bother. Do take the anti-emetic treatment and the laxatives as I did get some bad constipation when I did not bother to take them. I do feel a bit jaded when I am having the treatment, food tends to be tasteless but other than that I feel fine. You haven't said where you are being treated, I hope that it is a hospital with a good hemo department in which case ask as many any questions as possible. Incidentally our support group has an annual meeting in London on 4th Oct details on the website. It is very well worth attending to hear the experts and to meet other patients, I have attended the last three and I hope to see you there. Keep us informed how you are getting on. Good luck.
David Miller

Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 25 May 2014 16:42
by davidmiller
Dear Andrea. After I wrote yesterday I realised that you have been here before and that your latest message had got detached from your earlier history. I hope that yesterday's message did not sound patronising as you probably know more about our problem than I do. Furthermore I guess that you know all about the London meeting in October. Sorry.
Good luck with the treatment on Tuesday.
Best wishes David Miller

Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 26 May 2014 11:34
by Andy Pandy
Dear David

Thank you so much for your reply which sounded very encouraging and I am so thankful for all your advice. I am being treated at Eastbourne District Hospital which has an excellent Hemo Department and Doctors - my doctor had me in the following day as soon as my GP said my bloods showed change. I also have a specialist nurse looking after me and she has given me emergency numbers in case of any problems with the treatment. She did tell me about the constipation problem so I have Senacot at the ready and prunes!! I will be taking the anti-sickness pills half hour before the injections. My first treatment is tomorrow at 4pm. I am generally a very positive person and just get on with life whatever is thrown at me so hopefully all will be well. I am not sure about the meeting at this stage it being in London so do forgive me if I don't attend on this occasion.

Once again thank you for all your advice which I found very helpful and allayed any fears.

Best Wishes

Andrea Laking

Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 30 May 2014 12:37
by chris
Dear Andrea

Just a short reply to say that I was so sorry to hear that your MDS had progressed to AML and I hope the Azacitidine treatment starting the other day went OK and that it has the desired effect of bringing down the blast count. David's experience is very encouraging and, as ever, do ring Sophie if you have any queries that cannot be answered by your medical team.

With my best wishes


Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 06 Jun 2014 19:11
by MollyP
Dear Andrea
Sorry to hear about the progression to AML. I hope everything you are having to deal with is not too hard to bear and you feel better very soon.
Califig from the chemist is very very good for constipation, just don't go anywhere far from a loo after you have taken it.
Take care

Re: Diagnosed 21st May 2014 with Acute Myeloid Leukemia

Posted: 08 Jun 2014 17:22
by Andy Pandy
Dear Chris and Molly

Thank you both for your kind wishes. The first session of Azacitidine injections went well and I feel fine - I rubbed Evening Primrose oil on my tummy and it has taken away the sore areas. I had one bout of constipation but took extra strong Senakot and it did the trick this time but thank you for the advice on Califig! Next sesstion 23th June. Currently I have only needed to take an antisickness pill half hour before treatment each day. I will certainly contact Sophie if I need further advice. I remain very positive and don't really think about AML too much. Hopefully the Azacitidine will have the desired effect. I love gardening and have been making the most of the lovely weather in Eastbourne. This coming weekend I am going to my secondary school reunion.

All best wishes