Husband just diagnosed

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redballoon
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Husband just diagnosed

Postby redballoon » 15 May 2012 16:39

Just wondering whether anyone could tell me what a couple of things mean? We recently returned from seeing the Specialist at the Princess Royal Hospital in Farnborough, Kent. She confirmed that my husband has MDS. Though we waited over 3 weeks for the results they are still not conclusive as the chromosone test is not back and apparently the case has not been discussed at Kings yet. Not sure what the chromosone test is supposed to determine? Wondered if anyone knows?

She told him he is low risk at one point, but then put him at Intermediate 1 later in the conversation. I do know that he has less than 5% blasts but can't remember much of anything else except that his neutrophils are low, his MCV is enlarged and he has aneamia. I have asked for a copy of the results which she said she would send. We are a bit confused because she told him it might develop into Leukemia in about 3 years but how can she know when not all the resullts are back. My husband is suspicious that she is not telling all that she knows or suspects. How confusing and frightening this whole thing is.

Would appreciate anyones comments. Thanks Debbie
janetstanford
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Re: Husband just diagnosed

Postby janetstanford » 15 May 2012 16:52

Hello
i was just logging on when i got a message to say new contact post so this is why such a quick answer :)
i am sorry that your husband has just been diagnosed i can share all the fears suspicion ect as all on the site have been through the same to some degree
it is confusing and frightening to say the least so the best advice i can give you at this stage is contact sophie i am sure she can give you some good advice and information which will help you get through this difficult time....also post and ask us questions we will be glad to help /chat
as i say contact sophie
take care here from you soon Janet
redballoon
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Re: Husband just diagnosed

Postby redballoon » 15 May 2012 16:56

Hi Janet, thanks for responding so quickly. Thanks for your suggestion, I have left a message for Sophie, I suspect she gets inundated! It still feels surreal and scary considering we had never heard of this before. Where are you with this at the moment? Hope you are ok.
janetstanford
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Re: Husband just diagnosed

Postby janetstanford » 15 May 2012 17:18

HELLO
Welcome to the site i do hope we can be of help and support as time has gone on i look forward to logging on and hearing from chris sarah jayne and all the others i do believe we have helped each other i hope you get as much out of the site as we do ... as your husband is in the early stages i thought it is best you get in touch with Sophie first before we start filling your head with our stories and tales of woe :lol:
where am i on this well i did believe it was Mds as this is what i was told after my treatment (chemo) for high and low grade NHL of the bone marrow .....with me all cells such as whites platlets and neuts grew back this past three/half years but i was left with (final diagnois ) aplastic aneamia which is similar in a way but worse and i am blood transfusion dependent simple way to put it is either i do not produce enough or what i do produce my white cells attack and kill off ....i was first diagnosed may 2008 4 yrs yesterday.. even though we have a rare illness there are good treatments out there.... at the moment Jayne is mid transplant (bless ) nyankos dad is having chemo some are on vidaza which is working very well :) although its a :shock: remember again there are some great treatments out there

Take care remember we are here Janet :D
chris
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Re: Husband just diagnosed

Postby chris » 16 May 2012 09:08

Hi Debbie

Sorry to hear of your husband's diagnosis. We can all relate to the shock on finding out about our MDS or, rather, finding out minimal information or drip-fed over time!

The chromosome tests are to find out if your husband has any abnormal results which might affect the seriousness of his MDS and our experience is that they take a while to come back from the labs. Before they come back, the main things which are looked at are overall blood counts in the blood and bone marrow (presume he had to have a bone marrow biopsy -ouch - hope his was not too uncomfortable!).

As Janet says, if you can get through to Sophie or Alice, they can send you a very good booklet which will answer most of your questions - 100 Q & A about MDS. The book shows how the doctors work out how risky the disease is and you will see that having lower than 5% blasts is a good prognostic factor. Another encouraging thing is that the local hospital you attend clearly works closely with Kings which is pretty much THE UK Centre of Excellence for MDS. Not all cases of MDS develop into leukaemia - in fact it is put at around 30%- 40% in the booklet and the results help to categorise that risk. There is also some clear information on http://www.patient.co.uk (though I found an error in the prognosis info yesterday!!). Once you get all the results, you can have a better discussion with his doctor about possible treatments - or not- as some MDS is quite indolent and may only need active monitoring if it is not giving too many "bothersonme" symptoms. Some treatments are not suitable for older people - especially if they have other medical issues - though the good news is that more treatments are available now than there were a few years ago and the age for having stem cell transplant (the only potentially curative treatment) is rising steadily as techniques improve.

Try not to get too hung up/ worried on life expectancy figures that you may read as some of this info is not quite outdated. I know this is not easy as the initial feelings can often be quite panicky.

Take care and do let us know how things are when you have more information

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
chris
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Re: Husband just diagnosed

Postby chris » 05 Jun 2012 11:14

Hi Debbie

Do you have any further news yet? Hopefully,all the chromosome results are in now? Please contact Sophie if you need any support/explanation.

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
redballoon
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Re: Husband just diagnosed

Postby redballoon » 17 Jul 2012 16:22

Hi Chris

Thanks for asking. I am sorry I haven’t responded before now but things have been so weird. After the initial diagnosis we went several weeks coming to terms with it. Then I received a phone directly from the specialist at the Princess Royal to say that the results had come back from Kings and the case discussed and the findings were that my husband didn’t have MDS after all. Of course I felt a great relief but asked if they knew what he did have. She just said that his bone marrow was hypercellular and that he would need a scan and to be monitored. An appointment was made for about a month’s time. When we went to the next appointment the Specialist said that they still didn’t know what he has but they would just need to have him in every six weeks or so and take blood tests. When she asked if we had any questions I asked why we had been given a definite diagnosis before all the results were back from Kings. She replied that she had never said it was definitely MDS, I was speechless and replied that if she never said it was MDS why did she feel the need to phone me and tell me it wasn’t MDS after all. Incidentally, the phone call came when I was in the middle of shopping and it felt almost like ‘oh by the way.’ And shouldn’t she have phoned my husband?
I reminded her that she had already told us that he had low level to intermediate MDS and that it could progress to Leukemia. She replied that she would never have said that. I could only look at her in disbelief. I felt very angry that she had diagnosed him before the results were back from Kings. We both remember asking her if she was absolutely sure and she replied yes. I believe she was very sure but when her diagnosis was not backed up by Kings made a quick phone call. Shouldn’t we have been given an appointment to be told such news? It’s as though she has no idea of the power or her words and the effect on all of our family and friends lives. If only she had admitted that she could not be 100% sure until the results came back from Kings and they had discussed it then we would have been spared unnecessary stress. I remember my husband asking quietly ‘so it’s not going to go away then?’ I have never felt so sad. Anyway, she also responded to my question by coldly saying ‘well it might still be MDS or aplastic anaemia.’ Needless to say all our confidence in her has gone.
Anyway, we have just received a copy of the letter she sent to our doctor which says his diagnosis is hypocellular bone marrow with dyserythropoiesis. Apparently there is no dysgranulopoiesis. Cytogenetics are normal and the fish analysis did not reveal 5q or 7q deletion. Is that the chromosome test? His reticulyte count was 32 in the normal range. They also took a test for PNH which apparently never arrived at Kings. In the letter it says that there is an overlap between a hypocellular marrow, myelodysplasia and aplastic anaemia and that they may need to repeat the bone marrow if the cytopenias progress. He currently requires no intervention, but the suspense and not knowing is really hard. He feels very tired and is very depressed.
His full blood count is:
HB 11.9g/dl
WBC 3.1 x109/l
Neutrophils 1.4 x 109/l
Platelets 110 x 109/l
MCV 101fl
Does the above mean anything to anybody?
Everything is more worrying because he was diagnosed with plural plaques in February prior to this diagnosis which is evidence of asbestos exposure. My husband has worried about this since working with it in the 70’s & 80’s before its lethal effects were common knowledge.
Before all this my husband was fairly placid and easy going but has become very angry and bitter. It has not helped because his mother died slowly from a massive stroke in December. Prior to that we were carers to her and his 91 year old father. His father has survived the death of his partner of 61 years but is extremely demanding and another source of stress.
Does anyone know anything about any of the above? I would appreciate your responses as it feels very alone with all of this. My husband has withdrawn and is often cold and heartless and seemingly unaware of the effect of all of this on me and our two lovely daughters
Sarah Reakes
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Re: Husband just diagnosed

Postby Sarah Reakes » 18 Jul 2012 23:36

Hi Deborah,

I have just read your posting, and I will reply quickly as it is getting late but I just wanted to respond by saying how sorry I am to read that you and your husband have had such a rough time of it. I can totally relate to the problems you have described regarding the diagnosis or mis-diagnosis in your husband's case. This time last year I had just been diagnosed finally with MDS with del 5q but only after having had to wait for four weeks before I got the results of my cytogenetic test (chromosome culture) having previously been told that I had MDS and even though they didn't know which variant I had, the prognosis was that it was terminal and they didn't know whether I had months or years to live. I had the most tortuous time leading up to my 60th birthday thinking it may have been my last before they finally gave me the results that I was lucky enough to have the milder form of MDS. I also had a female locum who carried out the bone marrow biopsy (not very well as it turned out as I had to have a second one) and she also had absolutely no sensitivity whatsoever in the way she delivered the diagnosis. It did culminate in my complaining to the Consultant Haematologist and I refused to be seen by the locum again and insisted that I be seen by him and now I am only ever seen by the Consultant himself. I did also receive an apology from him for the way that I had been treated. The MDS I have although not curable (unless with a Stem Cell Transplant or Bone Marrow Transplant) is considered indolent i.e.: slow growing and with only a 3% chance of it turning to AML (acute myeloid leukaemia) and my life expectancy is approx. ten years and possibly longer with the possibility of drug intervention when I become blood transfusion dependant in the future. So I am on 4-monthly blood tests at my local hospital.

So I am sorry to say that your experience is not uncommon but it really is unacceptable and unforgivable to treat patients this way. I also have another health problem of an inflammatory nature where I suffer with lethargy, terrible joint and muscle aches, dizziness, etc, etc, which despite numerous tests with a Rheumatologist they have been unable to come up with a final diagnosis. One of the primary markers for an inflammatory disorder is the ESR reading in my blood which should be between 1 & 20 and mine is currently 106 and so this does muddy the waters as sometimes I really don't know whether the way I am feeling should be attributed to my MDS or the inflammatory problem. However I did see my Specialist yesterday and he is convinced that all my symptoms are due to the as yet undiagnosed inflammatory condition and not my MDS and he is suggesting that I have a steroid injections to help with the pain and he is going to write to my GP to suggest this.

I really am sorry that you are going through such a rough time at the moment and I can understand your husband feeling rather lost and desperate without knowing exactly what condition he has. His blood tests from memory don't look too bad as his HB is within normal range and the white cell count and neutraphils although below the normal range they are not that low, and around the same as mine at the moment, but mine have been a lot lower than this. All I can recommend is that you persevere with trying to get a final diagnosis but at the same time try not to let the abnormal blood counts alarm you too much since mine will always be abnormal and that is now my 'normal' and a lot of us with MDS lead relatively normal lives with our bloods like this. It is often other conditions (mine is the inflammatory problem) that are the ones that actually cause us distress rather than the MDS or other similar blood disorders. Blood disorders such as MDS are often diagnosed by accident when patients are being seen for other conditions and so it proves that people can live quite normal lives with abnormal blood counts without knowing it.

All I can suggest is to try and not let this lack of a diagnosis to weigh too heavily on you both and also tiredness is always made worse if you are feeling depressed; it really is a vicious circle. You have both had a terrible shock with the initial diagnosis and then finding that they made a mistake it is bound to shake your confidence in the hospital.

If you have an understanding GP then I suggest your husband and you go back to see him/her to see what he can do to put your minds at rest.

I wish you both the very best

Regards

Sarah (Reakes)
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
chris
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Re: Husband just diagnosed

Postby chris » 20 Jul 2012 18:11

HI Debbie

I had to wait a couple of days before replying as I was seething on your behalf and needed to calm down and give a more considered reply! I can just imagine how you felt, having gone through all the anxiety of a diagnosis of MDS and all the implications that brings only to be told that you had made a mistake and it wasn't that after all!! No wonder your husband is feeling low and angry! It might be helpful for you to talk to Sophie who is very good at helping people see the wood for the trees when the outcomes seem so complicated. She is also in touch with the Aplastic Anaemia Trust - should it turn out to be an overlap disease that he has.

If you look at the leaflets on MDS from Leukaemia Research (ask Sophie to send iot to you), they give normal levels of all these counts and a good explanation of MDS. His counts don't seem too bad - though all slightly under the norm. The main thing is to keep monitoring them and I find it helpful to do this myself to get a view on how they are moving and over what period of time. Nothing like a spreadsheet or a piece of graph paper to keep me out of mischief!

I can understand that he is also worried about the asbestos issue and, although, mostly,we women like to talk and talk about our worries, for some men, their way of dealing with it is most definitely not to talk and try to bury their worries by plunging themselves into work or other things. This may make them seem cold and indifferent but it is how they need to deal with it. My guess is he would not see a counsellor but it might help him to be able to air his fears and concerns outside of the family. He may be concerned that he would make you more anxious if he caved in to worry? Some hopsitals do offer this service and I know they do at Kings so it may be possible to get a referral in view of the linked care? Or Macmillan also offer a counselling service and David on this site found it really helpful to talk through the issues facing him. He is having a tough time of it - even if he doesn't show i - coping with bereavement, care of his elderly father and his worries about his own health. The fatigue caused by the low haemoglobin won't be helping either so I really do feel for all of you at the moment. It's good though that he is not needing anytreatment at the moment and that must surely be a good thing.

Not sure when your next appointment is but I am hoping that clarity comes soon. If you are not confident in your local hospital, you can always ask to be referred to King's - it is your right to get a second opinion - although - presumably that is thier opinion too?

Do take care and come back to the Forum or Sophie to get the support you need.

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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