Hi and Hello

[christina]

Hi my MDS also transformed to AML earlier this year after 9 years, because I am over seventy I decided on the azacitadine treatment which I have had 7 cycles so far, I have a bmb on Wednesday at Kings so should know if it's doing the trick, have to say after coping so well for 9 years life is a bit harder now but I'm coping and trying to stay positive. I wish you all the very best and admire you going for it but maybe you are younger than me, had I also been I would definitely have had the same treatment. I have joined a leukaemia group near my local hospital who meet once a month, so keep well Christina (Tina)

[AWOX15]

I’ve read the last two posts on here with interest. I’m currently on my ninth cycle of aza, but the words of the haematologist when I was first diagnosed stick in my brain. My MDS has the “propensity “ to change to AML.
I have an appointment with Professor Vyas at the Churchill hospital, Oxford in mid December. I can think of a few questions that I would like to ask and wondered if there are general questions from others, I haven’t thought of, that could be asked?
Like Tina I’m too old for a transplant, but would have definitely taken that route if it had been available.
I wish there were more contributors to this site for patients who cannot have stem cell transplants.
Good luck Tina and look after yourself with your Leukemia group.
Alan

[christina]

Hi Alan I went back over all my paperwork and for 9 years it's always been written that I have mds and I think because I have always been very active and positive have therefore have never looked at the bigger picture, I did know that whilst I was on Revlimid there was the possibility of it one day not working but it gave me such a good quality of life and enabled me to travel across the world to be with our family and just lead a normal life, Yes I was aware that my MDS could one day transform into AML which is what is written in my notes back in May after spending a week in Kings, I had been asked to go up for the results of my bmb but was not well on my arrival so they quickly gave me a bed. At my last consultation here in worthing last month he told me that my next bmb tomorrow would tell them if the azacitadine was working as I understood that it's better if you still have mds not AML however he also said my platelet count was normal and as far as he was concerned he would be happy me continuing on it, even though I have to have a transfusion every 2 weeks. Whilst I was on the Revlimid, EPO and GCFS I never had to have a transfusion, for years all was good and I give thanks for that and so glad I enjoyed every moment of it. So I will still stay on this Web site as Sophie and all her team are amazing but as you know I came off Facebook as I felt I couldn't cope with it although I am still in touch with some good friends I met on there. Will write again when I have more results it might be of use to someone, Kings tomorrow, my consultant here Thursday then a transfusion on Friday and if all well will start my 8th cycle on Monday, won't get the results of my bmb for awhile
On a positive note we had a glorious weekend a few weeks ago on the Isle of Wight and last weekend my daughter and I were up in London for the weekend and went to a wonderful concert at the Albert Hall, coped well with it all, so very blessed, stay well Tina

[PSRNE30]

Hi Again, Apologies for not maintaining contact but things have been moving at quite a pace.
I did write a great long post a wee while back but lost it during a cut ad paste exercise and could not face re-visiting all that'stuff' but after getting notification and reading DTUB10 's last post I felt compelled to 'man-up'.

Since my last post, my cell count was slowly increasing and after a 'get together the transplant team and the Haematologists decided to defer the transplant and observe closely the situation. So the deferment was triggered by an Hb reading of about 88 and over the last couple of months the cell count has slowly climbed to 99 as of last week. Still nowhere near normal but significantly better than the 63 I was at.

White cells and platelets are sitting around half what they should be. So on the back of my initial prognosis of 9 months (in April 2018) I continue to be vertical and am now retired at a young and relatively fit (at the moment) 58. I have been warned that any subsequent infections or illnesses may take longer to overcome but I can live with that. The hyper fibrotic nature of the MDS remains however regular bone marrow biopsies show improvement.

David I wish you every best wish imaginable in your continuing battle. You look after your mind and let the docs look after your body. I remember you asked me if there was anything different that I did, eat or drank that may have affected improvement and during that long post that I lost ( through bad keyboard skills) I developed a monster craving for fruit, fruit juice, fresh fruit anything that was cold and bitter. I was eating Northumberland out of rhubarb, drinking vast quantities of the most bitter juices I could find sometimes 2 litres per day! Not very healthy I know and eventually weaned my self off by diluting them with water.

I hope you get a nudge on email but I shall pop into the other site to see if you are there.

Kind regards and best wishes to all,

Paul

[DTUB10]

Paul,

It was great to hear from you again. It's a pity you are not in the clear yet, but your condition sounds like it is manageable. I hope that your counts continue to improve and that some day you can forget MDS for good.

My own counts never recovered. My platelets hovered between 12 and 15 without transfusions and I needed a unit of blood a week to keep my Hb over 80. That is despite switching to a very healthy diet and trying all sorts of supplements. My immune system got very strong though, with my neutrophil and WBC counts rising to the top end of the range. It was interesting to read about your juices.

When my white cells went ballistic and my platelets fell of a cliff I knew something was up. The bone marrow test confirmed AML, so instead of a single round of chemo before a leisurely SCT, I have to go through several rounds of chemo, leading up to a carefully timed SCT. I have been told that I have plenty of 'potential' donors, although they haven't narrowed it down to any individual donors yet.

The AML diagnosis came as a shock, because I was feeling well and my mental state was good. The IPSS(R) score gave me a high risk of AML, so it was always on the cards I suppose, but a few months more was all I needed to set up the SCT.

Anyway the week of intensive chemo was not half as bad as I expected. My body has coped pretty well. After 23 days in hospital my platelets and Hb have just started to recover, but my immune system is still at zero. Once my neutrophils get up to 1.0 they will give me another bone marrow test and let me home for a week before the whole thing starts again.

In a way I feel like I am fighting back against this disease at last. My hair has almost gone, but my spirits remain high most of the time. Its going to be a long six months, but there is hope for a remission and a successful SCT. Living with very low platelets and weekly transfusions was no fun. I couldn't do much or travel far.

I think I will continue to post on the MDS website, because there seems to be quite a few people who have been diagnosed with AML. You don't have to post any more, unless your condition changes. Just get on with your life and enjoy your retirement.

David

[PSRNE30]

Hi David,
Thank you for the reply I glad to hear that you are battling on, chin up and ever onward. It sounds like you have really been through the mill but you must have some fight in you!

I recall about 2 days before they were going to put my line in I was invited to the Freeman Hospital in Newcastle (The Bobby Robson Foundation) to meet the nursing team who would be looking after me and i was blown away by the sincere friendliness and character of those people. I was shown my room complete with Xbox and PS4 (I am not a gamer ) 50+inch TV , wet room, and a whole ranch of exercise equipment available for my use during the 6 or so week stay. It was so far from what i expected that after leaving I sat in the car before driving home and got a bit emotional . I still don't know for certain why, the thought of isolation didn't phase me nor the prospect of the treatment but some hidden buttons were pushed and that was the first time I felt my condition/situation hit me.
Even now it all feels rather spurious and vague. I am back at the Freeman on the 10th December for checks and will take things from there.

Have you got yourself a good hat? I was told it would be one of the most important decisions you will make, chunky knit or fine wool, bobble or not, cap or bandanna. I still have mine and I wear it as a badge of pride even though i am the only one that knows that. But it felt like it was one of my weapons against the enemy along with a tight schedule of appointments, injections, biopsies and a cloak of positivity. You sound strong and mentally robust and i am sure friends and family will in turn take strength from that.

In turn and if it is all the same I would like to continue to correspond with you on here as I want to hear when you up and and back in the ring. I am in remission, and if it can happen to me it can happen to anyone. So if you can be bothered to read my ramblings I shall be happy to write them.

Take care and stay strong,

Paul

[christina]

Hi David and Paul would you mind telling me your age or approx age as I think age is a concern when you are offered a transplant, as you know I'm in my early seventies and have had MDS for nine years, now AML so am back to King's early January to have discussions re my bmb results, at the moment having a good couple of weeks before starting my 8th cycle of azacitadine on Monday, I seem to be responding even though I am AML, so with family flying to the UK for Xmas going to just enjoy every day, good luck Tina

[PSRNE30]

Hi David and Paul would you mind telling me your age or approx age as I think age is a concern when you are offered a transplant, as you know I'm in my early seventies and have had MDS for nine years, now AML so am back to King's early January to have discussions re my bmb results, at the moment having a good couple of weeks before starting my 8th cycle of azacitadine on Monday, I seem to be responding even though I am AML, so with family flying to the UK for Xmas going to just enjoy every day, good luck Tina

Hi Christina,
Truly I was told that age was an consideration regarding a SCT however the consultant concerned also stated that many older candidates were diabetic, smokers and suffered from other underlying concerns so I think it is all relative. I am 58 and relatively fit and was considered a potentially good candidate. I was also told that it was not an easy ride and the journey was beset with many potential pitfalls and my letter from the head of dept at the transplant hospital did not pull any punches regarding the procedure and the variety of possible outcomes. So, would follow the advice of your consultant.

I hope all your family members arrive safely and that you have a fabulous Christmas,just sit back and enjoy let the guests do some work! I am going to Cape Town on Boxing Day for a few weeks. It is my most favourite place and so will be sitting African sunshine for the New Year, swimming,with sharks (which I love) and doing worlds highest bridge bungee again.

Every Best Wish,

Paul

[PSRNE30]

Hi David,

I have just received my copy of MDS Newsletter (Issue 9 November 2018) and there on page 13 is a significant article regarding the potential benefits of Vitamin C and its potential in the future treatment of MDS. As you may recall from my last post, I went fruit ballistic for about 6 weeks, not intentionally, more like a craving. It was literally all I ate and drank ( probably to the detriment of something else) but interesting that vitamin C should be in the headlines.
Hope you are doing okay ( I have just streamed Newcastle l v West Ham and watched us get battered 0-3 )

Take care and each day ,

Thinking of you,

Paul

[christina]

Hi Paul wow South Africa also one of my favourite places, for seven years before our kids moved to New Zealand we spent every year for a few months basing ourselves in Somerset West, and touring all those amazing places, we drove up to the battle fields, and flew up to Zimbabwe and drove into Botswana taking a fantastic safari and in Zimbabwe a glorious river cruise, also played on some wonderful golf courses, a wonderful country with beautiful people, have a wonderful time and I know you will enjoy and savour every minute of it. Have a glass of their wonderful wine for me and stay well Tina