my story - nothing drastic

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

Moderator: Steering Committee

Post Reply
stormproof
Posts: 9
Joined: 14 Sep 2012 10:59
Contact:

my story - nothing drastic

Post by stormproof » 10 Apr 2016 18:48

Hi everybody/anybody

My story starts back in 2001 when I was working as a GP. Age 48
I had been getting unusually tired - thought I might be anaemic.
The blood results weren't available as quickly as usual so I thought something was going on.
Low platelets (32) and neutrophils, with a high MCV.
Two bone marrows later - you've got MDS, go and read about it.
Textbook says - most patients are dead in two years.
And sorry - no treatment available.

After a year of gradually declining platelets, I asked for a second opinion.
"Dr Stockley understands that the median survival is two years."

Mercifully I was on a forum for doctors, and a Scottish haematologist happened to be part of the discussion.
He took the scenario to a major clinical meeting they were having and presented it to the gathered experts.
Conclusion - cyclosporin would possibly help, Ring Prof Mufti at Kings and he will probably help.

So I did and he did.
Cyclosporin didn't work.
Around that time I had a breakdown and was retired early from work.
I then had daclizumab, which was normally used for aplastic anaemia, because my MDS was hypocellular.
It upset things - levels dropped initially - but it didn't bother me because it was obviously doing something.
Over the next five years there was a very gradual improvement in levels, then over the last five years the neutrophils have been in the normal range and platelets above 100, levelling off at about 145 over the last year or so. I was having check FBCs about twice a year - less often recently as it all seemed so stable.

Recently I had a nasty virus with a lot of blood in my wee. A bit odd I thought.
GP checked my blood - platelets down to 76 and neutrophils down though still much better than they used to be.

My hope is that it is all a blip caused by the virus.
My fear is that it isn't.

I'll be happier when I know a bit more what's going on.
At the moment I oscillate between denial and anxiety.

Anyway thanks for reading all the above. Let's hope it's a false alarm. I'll post again when the next readings come through and/or bone marrow is done.

TTFN
Goldtooth
Posts: 62
Joined: 01 Apr 2015 10:15
Contact:

Re: my story - nothing drastic

Post by Goldtooth » 11 Apr 2016 08:00

Hi Stormproof,
I know exactly what you are going through.
I have MDS-RAEB2, I have a very poor prognosis. I have a very good haematologist who gave me all the information about it, still a ghastly shock.
I am being treated with Azacitidine 5 days in every 28. Just completed my 17th cycle, and my condition is still stable at the moment.
I am experiencing the same problem as you, I have had blood in my semen which petrified me as I thought I may have prostate cancer.
I have had all the tests, PSA( which was normal) and a rectal examination which showed my prostate enlarged( normal for my age 72) but smooth and not tender.
I had a word about it with my haematologist about the blood issue and she said I should see my GP which I am tomorrow.
I also spoke to the Prostate Cancer Society support nurse who told me it was probably due to an infection and see my doctor for a course of antibiotics which would clear it up.
I can fully understand your alarm about the blood issue. Phone the Prostate Cancer Society and the support nurse will do a great deal to allay your fear
Best wishes and good luck to you
Anthony Abel
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: my story - nothing drastic

Post by chris » 13 Apr 2016 13:43

Hi Stormproof (and Anthony)

Hoping your test results are back now and don't show up anything suspicious. Viruses and infections do tend to play havoc with blood counts until they settle down again and it's great that your counts improved and have largely remained stable on the Daclizumab ( not heard of that one!!) for such a long while. The trouble with having something like MDS is that we tend to blame everything on it when truth is that we can also - and quite unfairly IMHO - be subject to other diseases completely unrelated!! Hard not to be anxious and it has probably put you right back to how you felt at initial diagnosis? Having been a GP probably also makes you hyper-aware of all the possibilities?! I now try to park my worries until there is something concrete to worry about! Saves a lot of useless ruminating at which I am highly skilled!

Anthony - hope yours also being sorted.

My best wishes to both of you. 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
stormproof
Posts: 9
Joined: 14 Sep 2012 10:59
Contact:

Re: my story - nothing drastic

Post by stormproof » 13 Apr 2016 21:21

Nothing drastic continues - 2 week wait urology appointment today, no more haematuria, normal exam, cystoscopy and renal ultrasound to follow; apparently 80% have nothing sinister causing it.
Thanks for taking the time to read my story.
Just waiting now for the advice from Kings to come through re the MDS.
Goldtooth
Posts: 62
Joined: 01 Apr 2015 10:15
Contact:

Re: my story - nothing drastic

Post by Goldtooth » 14 Apr 2016 06:09

Thanks Chris,
My GP has given me a six week course of antibiotics to clear up a urinary tract infection, hopefully this will do the trick.
I agree with what you say that we tend to blame everything on MDS.
Whilst searching the net in an idle moment on side effects Azacitidine I found that urinary tract infections are a common side effect, also sinus problems which I do get.
There are plenty of other really scary side effects too, I didn't read about those. It's too easy to get scared needlessly..
I feel very well at the moment and intend to enjoy the time I still feel like this.
Best wishes
Anthony
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: my story - nothing drastic

Post by chris » 14 Apr 2016 22:45

Hi to both

Sounds like things seem more optimistic for you both. Hope this continues when all the tests have been completed, Stormproof. Re the MDS situation, it's great that Kings are on your case and I'm sure you'll get the best possible care from them.

Anthony - I think Azacitidine, in common with other forms of chemo, does lower white cell counts so you might be more susceptible to all sorts of infections. You win some, you lose some with all drugs!! Might be worth gaining some awareness of potential side effects - if only to save you worrying that you might have other medical "problems" when they are only side effects of the drug?!

Am enjoying the new "face" of this Forum!! Somebody's been working hard at the new layout!!

Never going to get our main crop potatoes planted if it keeps raining!!

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
stormproof
Posts: 9
Joined: 14 Sep 2012 10:59
Contact:

Re: my story - nothing drastic

Post by stormproof » 20 Apr 2016 21:32

So USS Kidneys and cystoscopy today - normal.
And Platelets back up to 110, neutrophils 1.65

So it all appears to be righting itself.
Just an appointment at King's in May for review and probable bone marrow.
I anticipate all well in due course.
Thanks for supportive responses.
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: my story - nothing drastic

Post by chris » 29 Apr 2016 14:57

Good news indeed! Hope bone marrow biopsy results also turn out OK. Nice to be back to something nearing stability for you? We get used to our own "normal" don't we?!

Keep well

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
stormproof
Posts: 9
Joined: 14 Sep 2012 10:59
Contact:

Re: my story - nothing drastic

Post by stormproof » 29 Apr 2016 15:38

Funny how things pan out.
I had a major depressive breakdown about 12 years ago and ended up on high doses of antidepressants for many years.
I came off them last June.
In retrospect the virus demolished my ability to cope with the recurrence of the depression which had begun a couple of months ago.
I was becoming very tearful and helpless.
GP kindly provided Citalopram and although the fatigue is still with me it's such a relief not to be dreading life.
I'm a slow learner!
stormproof
Posts: 9
Joined: 14 Sep 2012 10:59
Contact:

Re: my story - nothing drastic

Post by stormproof » 19 May 2016 22:27

Saw Kings on Monday.
The red urine was likely caused by a PNH clone of red cells that lysed when I had the virus.
Not so uncommon apparently; although proper PNH occurs about 3 in a million.
And no bone marrow needed.
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest