Newly Diagnosed

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clareybabs
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Newly Diagnosed

Postby clareybabs » 05 Jan 2013 23:44

Hi there my name is claire, i'm a 42year old nurse and in the last 8 weeks my life has turned upside down.

About end of september whilst on holiday, i started having chest pain and shortness of breath on slight exertion - mainly in slight inclines, didn't think anything of it, just put it down to being unfit. Anyway when went back to work, noticed when walking down or up one flight of stairs - was getting the pain and shortness of breath again, this continued until 5th november when i got my bloods checked by Gp as shortness of breath was getting worse, and was having other symptoms of shivering - with no temperature and a fast heart rate of 150 beats per minute.

got phone call from GP - that HB was 4.0 - went to hospital next day - transfused 4 units and had bone marrow biopsy and aspiration. Was in hospital for a week, during this time found out i was neutropenic, as wcc was 2.2 and neutrophils 0.9, platelets were 53. Had a further 2 units of blood and HB on discharge was 12

On 27/11/12 was diagnosed with MDS - and told they were going to treat aggressively with BMT
On 17/12/11 - met up with professor jackson at newcastle freemans and was officially diagnosed with MDS - (RAEB form with poor cytogenetics with monosomy 7 and an extra X chromosome.
Was informed poor prognosis, if don't recieve BMT will have a 100% mortality rate - will die within 1-2 years.

I was tissue typed while i was at newcastle and as i have one brother he had bloods taken whilst home for christmas, i am aware that the probability of him being a match is only 25% match - but i am hoping and praying.

I've been feeling okay, just general aches and pains, shortness of breath and cold - when HB drops. I've had a further 4 units of blood - so 10 in total since beg of nov.

The last couple of days i've started with a new symptom - which i'm a bit concerned about - Every time i swallow any liquid or eat any food, i get a sharp pain in my left side - just round from my left breast couple of seconds after - initially the pain was there just after eating or drinking - but now its uncomfortable throughout the day - just a dull ache - as i've been reading up on MDS - i'm wondering if its my spleen is starting to swell as its in the same region - just wondered if anyone else had this symptom? i'll have to ring up monday morning and enquire. Haematology ward just advised to take plenty of pain killers.

Psychologically think i'm doing ok at the moment - to tell you the truth, everythings happened so quick i'm quite numb

CLAIRE X
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
chris
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Re: Newly Diagnosed

Postby chris » 06 Jan 2013 15:15

Dear Claire

What to say to you? All of us on this site are only too aware of how shocking this diagnosis can be - the more so when everything happens so quickly and you are plunged from good health to serious illness in such a short space of time. No wonder you feel a bit numb! It takes time for everything to sink in and to start getting the information you need. If you haven't done so already, do speak to Sophie on the Patient Helpline as she can provide a good listening ear and send you information - both about MDS and Stem Cell transplant -plus there is plenty to access on this site.

Let's hope that your brother is a good match for you but donor banks seem to be pretty good so be assured that there will be other options for you. Do read the various blogs about stem cell transplants (look under Jayne's story and Janet Green's posts about her husband, Ken)) and there is an article in the MDS Newsletter coming out in January which will be posted on this site.

No wonder you were having problems breathing etc with an Hb as low as 4! I have an enlarged spleen due to my MDS and have also experienced the stabbing pains and the generalised ache on the left side under the ribs so you might ask for it to be checked - ultrasound or CT scan will show how your spleen and liver are being affected by the MDS. Enlarged spleen may also cause left shoulder pain too and hiccoughs - something to be aware of.

With low neutrophils, you need to steer clear of anybody with infections as you want to be as well as you can be in readiness for the treatments you will have. I expect there will be all sorts of practical considerations too regarding your job as that is probably not ideal for somebody susceptible to infections?!

Meantime, rest and take good care of yourself.

Let us know how you are getting on.

Best wishes

Chris
Chris. (F) Age 67 (2017). 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
janetstanford
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Re: Newly Diagnosed

Postby janetstanford » 06 Jan 2013 19:18

Hello Claire
You will be shocked at your news we all are but with time help and treatment it will get better just a shame we all have to go through such a hard journey to get there ....anyway
I agree with Chris do get in touch with Sophie she can help and we are here even if you just need to sound off :) we do like to read others thoughts and comments :) ........
your results and initial symptoms echo my own ..i am blood transfusion dependent but i have Aplastic slightly different at first i was told MDS but my doctor changed his mind ....
i come from the north east and know the Freeman very well do you live in Newcastle or outside i live on the other side of that famous bridge
i have to say i am quite excited about another member from the north east should i say that under the circumstances :?: i hope so welcome to the site
please feel free to post again Chris and I will help where we can
please take care Janet
clareybabs
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Re: Newly Diagnosed

Postby clareybabs » 07 Jan 2013 21:15

Hi chris and janet, thankyou for your kind words, it means a lot to hear so many people are going through what you are going through. at least i don't feel alone anymore. I'm still having discomfort in my left hand side, radiating around shoulder, constantly throughout the day and couple of seconds after swallowing - got bloods checked, wcc dropped slightly from last week from 2.6 to 2.5, but neutrophils from 0.7 to 0.5, maybe i have some kind of infection, cos i have had a sore throat over last couple of days. Got appointment to see consultant tommorow - so i'll let you know what it may or may not be.

Janet, cos my case was a bit more complicated than anticipated, they had a MDT meeting at freemans, to decide on best treatment of care - it was decided from this meeting that they were going to treat it aggressively with a BMT, as i am high risk of it developing into AML - i will be under professor jackson's care from 28th january.

The strange thing is my best friend, who was also my nursing colleague, we worked on the same ward, was diagnosed with MDS in sep 2008 - which quickly developed to AML, she had chemo to kill the cells, when she went into remission, she had a BMT. in april 2010, - she had 18 months post transplant i would say 6 good months, she was back at work, non-clinical though, went to transplant games, was starting to enjoy life, then in the sep she had a relapse and died in the dec.

So me having the same illness is even more scary for me and my family, i know everyone's case is different, but its still a worry x
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
janetstanford
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Re: Newly Diagnosed

Postby janetstanford » 08 Jan 2013 15:16

Claire

so sorry to hear about your friend very sad and i can understand the way you feel about BMT so scary not knowing the outcome maybe... a couple of years ago it was discussed with me several times and even the thought frightened me silly ....
thanks for the explination about the Freeman had to ask the question as it is normally the RVI that is talked about when i have spoken to a couple of others ( just quickly when having a transfusion ) who are having A BMT 1 was a young man about 8wks ago who was starting his road the following week i have several times wondered how he is doing i do hope he is well

i do wish you luck at your clinic appointment tomorrow and hope the doctor answers lots of your questions which will take some of the worry away....please let us know how you go
take care Janet :)
Lesley
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Re: Newly Diagnosed

Postby Lesley » 08 Jan 2013 17:28

Hi Claire, I am Lesley from Scarborough and was diagnosed April 2011 with raeb that quickly transformed to aml. Mine was aggressive they said with 20q del on cytogenetics. I had a mud transplant June 29th 2012. The donor is a young 19 yr old lad bless him. I am now 6 months post transplant and to be honest It wasn't too bad just very boring. I was in for 5weeks and it was straight forward. I now have gvhd of the skin but its under control with steroids and cyclosporine. I hope you soon have a donor available soon so it can go ahead ASAP. Keep your chin up all will be okay
chris
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Re: Newly Diagnosed

Postby chris » 09 Jan 2013 12:07

Hi Claire

Also wanted to say, as has Janet, how staggered I was to read that your best friend had died from MDS- and subsequently transplant -related causes and how that must be having quite an impact on how you are feeling about your diagnosis and planned treatment. What really puzzles me is that this is supposed to be a rare disease, rarer among younger people, less common in women than men and yet here we have 2 young women who are close to each other in so many ways and who both get the same disease!! It does make one wonder if there is not an environmental factor at work here? Is your (and was your friend's) MDS primary i.e. not resulting from prior chemotherapy treatment? Had you as work colleagues worked in similar environments ? The odds of this happening by chance seem so high.

Lesley - thanks so much for your contribution which is so encouraging for Claire and we wish you well as you come through the transplant. It sounds as though it wasn't too bad an ordeal - boredom being the worst side-effect!! Hope the skin GVHD can be sorted and will recede with time and treatment. I was a bit puzzled though as you said that you had deletion 20q and that your MDS was considered aggressive as everything I have read says that deletion 20q is a cytogenetic finding which has a favourable prognosis - provided it is the only one? I guess, as ever with MDS, that this is not a 100% guarantee and hopefully, clinicians will get much better at predicting the course the disease will take.

Hope your appointment yesterday went OK Claire? Let us know what is happening as you will be in our thoughts.

Best wishes

Chris
Chris. (F) Age 67 (2017). 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
Lesley
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Re: Newly Diagnosed

Postby Lesley » 09 Jan 2013 16:16

Hi chris, my cytogenetics before my 3 rounds of chemo in hull showed abnormalities on 3 genes. The bone marrow pre transplant showed 20q del which is favourable like you said,cytogenetics can change apparently and mine changed for the better. I had my transplant at st James Leeds and feel very hopeful for the future,I was weak and ill at diagnosis but all that has gone now,I feel stronger but still being careful ie crowds etc,need to be off steroids and cyclosporin before I start venturing out more. I am 59 and was devastated when diagnosed but here I am nearly 2yrs on having gone through the worst of it.
Lesley
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Re: Newly Diagnosed

Postby Lesley » 09 Jan 2013 16:28

I forgot to mention that my bone marrow post transplant shows a normal marrow with no sign of disease and 100 per cent donor. I am very happy with that and I hope that makes Claire feel better about the future
chris
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Re: Newly Diagnosed

Postby chris » 10 Jan 2013 14:18

Hi Lesley

Thanks for explanation re cytogenetics!! Clearly it wasn't only -20q as there were other abnormalities too. It's amazing how the stem cell transplant fixes all that was "wrong". Amazing. So good to hear how well you feel whilst taking sensible precautions in crowds at this rather lurgy-rife time of the year. What is the plan re the steroids etc? Are they gradually reduced? Have you had to have all your childhood immunisations? Jayne Snell is having hers soon - she is about 6 months post-tranplant so at a very similar stage to you In fact, surely she was there at the same time? (Fairly sure she had hers at St James's .....but I may be wrong......!)

Was your stem cell transplant a reduced intensity one or did you have the full-blown pre-conditioning with Total Body Irradiation? If mine is needed, it would have to be reduced intensity I think as I am now 62, going on 63! Though it must have been a blow to you at 57 at least you had age on your side - being the right side of 60!!

My godson is a doctor and surgeon (now a GP) but did his medical training at Jimmy's!!!

Best wishes

Chris
Chris. (F) Age 67 (2017). 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

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