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MyMDS has changed course

Posted: 10 May 2014 12:55
by Andy Pandy
Hi folks

Just to report that my GP called me into the surgery to tell me that my latest blood check showed Leukemic cells. He contacted my Haemotologist and I had an appointment for the following day. He confirmed that I had Leukemia and is doing a bone marrow biopsy and aspiration this coming week. I am also going to start Azacitidine treatment soon. On the 1st April I was sent to hospital with pneumonia and whist in the medical assessment unit suffered a cardiac arrest. I spent a few days in intensive care and then went to the Cardiac ward where I underwent checks on my heart, Angiogram, etc. All findings were clear and a virus was the cause for this event!! I left hospital on 13th April with a host of pills!! My Haemotologist said that my previous health problems had not caused my MDS to change course it just happened. I feel fine at the moment and being a positive person intend to get through the treatment as smoothly as possible. My son is getting married in July next year so I have to be right for their special day.

Regards Andrea :o

Re: MyMDS has changed course

Posted: 10 May 2014 13:34
by chris
Dear Andrea

So sorry to hear about the recent change in your blood profile and your pneumonia and cardiac arrest. You really have been going through it lately. This change seems very sudden as your last visit to the haematologist in March seemed so positive that he didn't want to do a bone marrow biopsy. I hope your bone marrow biopsy next week is not too uncomfortable and that your results come through quickly. I cannot remember if you have had to have blood transfusions because of your MDS or if it was only the white cells which were affected? Unfortunately, Azacitidine seems to lower white cells so you may have to be even more careful about infections and I also wonder how your skin will react to the injections. There is some advice on the Macmillan site I think. Or ask Sophie.

I wish you well and glad to hear that you are feeling well in yourself and have such a great incentive to respond well to the treatment.

With best wishes

Chris

Re: MyMDS has changed course

Posted: 11 May 2014 11:39
by Andy Pandy
Dear Chris

Yes it was a bit of a shock - I was doing so well but then these things happen and we just have to deal with the knocks as they come along. I'm not looking forward to the bone marrow biopsy - I remember last time it made my eyes water! I've not had any blood transfusions with the MDS RCMD just observation. I've got an information sheet on Azacitidine and will have to keep a watch out for infections. I have an excellent specialist nurse to ask advice etc. - she's given me all her contact numbers. I'm due to start Light Treatment tomorrow for my skin - take it one step at a time. Thanks for the info on the MacMillan site I will have a look and read. I have put some of my weight back on which I'm pleased about. Got to get well now for my son's wedding next July - I have my wedding outfit to make!!

Thank you for your kind wishes and advice. Hope you are keeping well.

Kindest regards

Andrea

Re: MyMDS has changed course

Posted: 01 Apr 2015 18:54
by Goldtooth
Dear Andrea,
My goodness you have been through it.
I start my fourth cycle of Azacitidine on 9/4 and to date I have had no adverse reactions, they gave me a fact sheet of possible reactions but all I have felt was tiredness at the end of each cycle, that only lasts for a day or two.
I had a BMB in November and they warned me it would hurt, but I didn't feel a thing. My back was a bit sore for a couple of days after, that's all.
Good luck and best wishes to you.
Anthony

I have RAEB2, which came as rather a shock as you can imagine

Re: MyMDS has changed course

Posted: 07 May 2015 18:43
by Andy Pandy
Hi Anthony,

I also had a BMB recently and was pleasantly surprised because I felt no pain just some soreness on the site for a couple of days afterwards. The results were very good my blasts were 3%, 13% last April and my bloods were all up near normal except my platelets which my Consultant said was probably the Azacitidine. He's going to stretch out the time between treatments and possibly weaken the chemo. I feel tired during my 7 day chemo treatment but usually just go for a lie down and relax. I'm off to Cyprus at the end of May so really looking forward to my break. I also suffer from Nodular Prurigo and the Cyprus sea ans sun helps a lot.

It is a shock when you find you have a life threatening illness, but I continue to remain positive and live life as normally as I can.

All best wishes to you.

Andrea ;)

Re: MyMDS has changed course

Posted: 24 May 2015 16:05
by chris
Dear Andrea

Just posting belatedly ( been away!) to say how great you blood counts are- especially the blast reduction. Yu must be very pleased. Hoping you really enjoy your hols in Cyprus - I know it's usually great for you - if only we could have a bit of sun here ibn the UK - after all, it is May!!!

Best wishes

Chris

Re: MyMDS has changed course

Posted: 03 Aug 2015 19:45
by Andy Pandy
Hi Chris

Thank you for your kind comments.Yes we could do with more sun in the UK, I suppose early July wasn't bad but it didn't stay! Continuing to do well, my Azacitidine injections have been spread to 5 weeks now following my good news. I had a brilliant time in Cyprus in May and guess what - I've just booked a flight to Cyprus in September for another 3 weeks with my sister in her apartment.

Best wishes

Andrea

Re: MyMDS has changed course

Posted: 05 Aug 2015 19:55
by chris
Great news Andrea. The sun treatment certainly does you a power of good! Did you also have your son's wedding in July? Hope it went well and you got your outfit made in time!! Glad they are happy to reduce your treatment now so hopefully fewer times of feeling tired?! Did you have to plan your trip around treatment schedule then? Gluttons for punishment, we are returning to Yorkshire in the Autumn so no chance of warm weather there!!

Take care

Chris

Re: MyMDS has changed course

Posted: 20 Oct 2015 16:50
by Andy Pandy
Hi Chris

Sorry for delay. Had a wonderful time in Cyprus in September, weather was very warm 30deg every day! The sea was like a warm bath hence I stayed in for over an hour. My son's wedding in July was beautiful, and ye I did finish my outfit and very happy with it. My new daughter-in-law is Hong Kong Chinese and has lived with her family in the UK since she was a baby. She's a wonderful caring girl and just right for my son. We had a Tea Ceremony to start before the traditional wedding afterwards. I feel a lot better since they have extended the time between treatment but my Consultant only allows me to be away for three weeks. So I go on holiday straight after treatment and return for another lot! It's not too bad though and keeping very positive. Hope Yorkshire isn't too cold or wet.

You take care too

Andrea x

Re: MyMDS has changed course

Posted: 21 Oct 2015 13:17
by chris
Hi Andrea

Glad wedding and holiday etc went well. Sounds lovely. I'd be up for a tea ceremony before a wedding!! I have one 3 times a day!!

Glad the treatment is also going well for you. I shouldn't have "dissed" the weather in Yorkshire as, actually, it was gloriously warm and dry and we had so many teas outside in the Autumn sun. Warmer than May in fact!!

Am still "stable" with my CMML and largely well with only minor symptoms so mustn't grumble!!

Take care

Chris