Gavin - Just diagnosed

Please post here your experiences of MDS as a patient, carer, family or friend

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GAVIN1976

Gavin - Just diagnosed

Post by GAVIN1976 » 10 Nov 2012 08:40

Hi All, I am also new to this forum. I am 36 yrs old and just been diagnosed with hypoplastic MDS. This all came as a real shock to me and family, as it followed on from a routine doctors app, in which I was then referred to hospital, in which they did blood tests.

Following on frm the bloods, and having a bone marrow biopsy, the doctors then imformed me of the diagnosis after about a week of waiting on results.

I am now being seen under Kings College, but the thought of the chemo, and bone marrow transplants in daunting to say the least so grateful of your experiences and thoughts and advice

Gavin hepburn Aged 36 W Sussex
chris
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Re: Gavin - Just diagnosed

Post by chris » 12 Nov 2012 12:00

Dear Gavin

Thanks for posting and sorry that you have received this diagnosis at such a young age but, as Graham said in his reply elsewhere, the positive aspect of that is that you have your youth and health on your side so you may have more treatment options than people who are diagnosed in later years. This diagnosis inevitably comes as a real shock - especially if out-of-the-blue and it is hard to absorb all the implications - let alone dealing with a sort of bereavement for your own good health. It does usually take a time to get your head round it - especially if you are launched into fairly immediate treatments. On the other hand, you may not need any treatments just at the moment - so try not to worry about that as sometimes it is better to monitor what the disease is doing for a while. Your medical supporters and clinical nurse specialist will be able to tell you more but make sure you get all your questions answered otherwise you will be going over and over it all in your head until the next appointment!

Do get in contact with Sophie Wintrich at the main office who can send you information about all forms of MDS and then you can find out more about your specific type of MDS. There is also a lady called Fiona who posts as Abbeyfarm on this site who also has the hypoplastic type and has had some treatment for it already. She is also very young and this brings other issues regarding work and family.

You are at Kings College which has a reputation of being THE UK Centre of Excellence for MDS so I hope it gives you some comfort to think you are in good hands there with a wealth of knowledge and experience in MDS and stem cell transplants and all the current treatments for MDS.

Do keep us updated with what is planned for you and try to make sure that you have people you can talk to about this as the rarity of the disease brings its own issues.

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
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 15 Mar 2013 14:56

I have just come back from my regular monthly blood checks, and since being diagnosed in November, each of them continue to rise, hmg now 10.3, neut 0.8 and wcc 2.0

Has anyone else out there experienced there levels rising?....I'm not complaining, it's a good thing, but I just find it a bit strange when docs are saying my bone marrow is not functioning properly, yet my levels are improving all the time, although far from being at a normal level
chris
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Re: Gavin - Just diagnosed

Post by chris » 16 Mar 2013 15:43

Hi Gavin

Well, as you say, that's good news and nothing to complain about! The thing is MDS is quite an unpredictable disease and in many people it seems to be a slow- burner and in others it kicks off very seriously very soon after diagnosis. If you are on active monitoring and not needing treatment at the moment, that is "a good thing" and it's a bit like that rider they always give on investment advertisements i.e. remember - blood counts may go up as well as down!!! They can vary from day to day, month to month. Last December my Hb was down at 10.9 which was quite low for me but I had only just got over a nasty chest infection. In March it went back up to 12.7. My neuts have also gone up to 0.78 - usually around 0.5-0.6 and WCC to 3 - usually around 2.5. I am not complaining either!! I have noticed that my white counts went up if I was starting a cold. I also wondered if the time of year had anything to do with changes - maybe diet, sunlight, whatever!!! One of the regular posters (Andy Pandy) on this forum always seems to be better after she has spent a few months in Cyprus.

After a while, you may be able to detect trends. Personally, I keep my own spreadsheet and graphs so I can see what is stable and what is deteriorating. But then I am a little bit of a spreadsheet nerd!!

Best wishes
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
AlanF
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Re: Gavin - Just diagnosed

Post by AlanF » 17 Mar 2013 14:56

Hi Gavin,
Theresa had Horse ATG treatment back in October, it offers a 50% chance of reduced dependancy on platelets & blood, however it is not curative for Hypoplastic MDS. It takes about 4-6 months to see any improvement. Touch wood her neutrophils have gone from 0.1to 0.8-9, her Consultant has reduced her platelet transfusions from 2 twice a week down to 1 per week as they were worried she may become refractory I.e. she would not benefit from them in the event of a bleed. They will not allow her to fall below 10 and at present they are c14 pre and c50-70 post. She was having 2 units of blood every 2 weeks with Hg levels at 11.5 highest down to 8.5 lowest, and believe me she finds life not worth living when they fall much below 9. However over the last 3 weeks her levels have stayed over 9. Early signs of some improvement, especially as this is now giving her less trips to hospital and the opportunity perhaps for us to have a small break away somewhere. She has had a much better sense of well being and appears to have a bit more drive, she has a referral next week to a clinical psychologist and this should hopefully add further impetus.
The consultant has been very honest especially with regard to the fact that Theresa is extremely unlikely to find a BMT donor due to her complex genetic make up and her HLA antibodies, she has also written to confirm all these details to her works pension trustees so they should now pay her early on ill health grounds.
Sorry to go on a bit but it does appear levels can fluctuate, Theresa has had her cyclosporine doses first put up then down due to kidney levels being poor and now being increased again, it's like walking a tightrope try to get everything just right to give supportive care which also allows some acceptable quality of life.
Have you been lucky with a BMT yet? Are they confident of finding a donor?
It's a little of an awkward diagnosis Hypoplastic MDS, it's on the edge of MDS and Aplastic Anaemia neither one or the other, I noticed there is a meeting later this month at Kings with Nana chairing the AA, and Geke chairing the MDS, where would you and Theresa sit????
Hope to hear from you soon
Regards Alan & Theresa
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 17 Mar 2013 22:32

I have got my next app at kings on 8 April ....I should know more re the search for suitable matches then.

I am actually feeling fine with my levels at mo, so guess that is good news, but understand the levels can take a turn for the worse at any point

I don't know if they will delay transplant if I am feeling well in myself and see where the disease takes itself over te next months

How long has Teresa been on search for BMT?......my search only started in Jan..
AlanF
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Re: Gavin - Just diagnosed

Post by AlanF » 23 Mar 2013 17:48

Hi Gavin
Theresa has been on the register since last Feb but with no success. This is basically because her genetic make up is rare, her maternal grandmother was half French and half Indian. She has what they call HLA antibodies (described as little flags on her cells) which also makes a match harder to find. I understand there is a sort of computer sweep every 3 months of all new and existing donors registered which I think is around 14 million worldwide. If you are lucky enough not to be too out of the ordinary I think you should have a good chance. They won't consider much less than a 10 out of 10 match as the risk of GvHD is more acute on lower matches. Theresa is at present not too bad with platelets now just one bag per week, she went 3 1/2 weeks between blood transfusions this time (but Hg was down to 8.3 by then) neutrophils at around 0.8, early days would indicate that the ATG has given her some improvement in being less transfusion dependant.
She has also had the green light from her pension trustees and they are going to pay her early on the grounds of ill health. Her employers are going to release her as the consultant has advised she is highly unlikely to ever be well enough to return to work? As long as the infections don't return (difficult when you've got a Hickman line) we are looking to have some days away. Been a long year.
Regards Alan
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Re: Gavin - Just diagnosed

Post by Claire » 23 Mar 2013 18:09

Hi Alan

Sorry to hear about everything you and Theresa have been through. I hope a donor is found soon.

In the meantime I really hope you can get some days away. Getting away from the house even for a few hours is often a great tonic.

I am at the very early stages of dealing with MDS so have no knowledge to offer but the support on this forum seems to be amazing and has certainly given me a boost in the last couple of weeks.

Thinking about you both.

Claire x
chris
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Joined: 01 Dec 2009 21:52
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Re: Gavin - Just diagnosed

Post by chris » 25 Mar 2013 13:24

Hi Alan and All

I have posted a reply to your posting under Theresa's hypoplastic MDS topic.

Best wishes

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
GAVIN1976

Re: Gavin - Just diagnosed

Post by GAVIN1976 » 25 Mar 2013 23:11

My app at kings has now been brought forward to this Wednesday, so should know more re donor search etc and will post on here what happens..

Quick question though, and. Will ask my consultant the same, does anyone know how monosomy 7 has any effect post transplant?....I have read so many negative effects of having this, and wonder if I am over reading?.....
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