Just Been Diagnosed

[david j]

Hello All,

I'm new to this forum.My name is David, I am age 47,from Brighton,East Sussex.

My story is as follows:-

After a routine check-up in 1999, I was discovered to have a slightly low platelet count (136).All other blood counts were normal and as I was otherwise fit and healthy,it was classed as insignificant.However,on another routine check-up 18 months later(October 2000),I was found to also have a slightly low Neutrophil count.I was then referred by my GP to Haematology at my local hospital (RSCH in Brighton).I have been attending there for monitoring every few months ever since.

During that time my platelet and neutrophil counts have slowly decreased to moderately low values.I had also had a couple of bone marrow biopsies,firstly,in 2003 which was okay,and again last year,which had slight changes but nothing diagnostic.I have otherwise remained generally well and have always worked full-time.

However,after a CT Scan last Autumn,it was discovered that my spleen had become slightly enlarged.It was then that my consultant referred me for an appointment a King's College,London as she said they were the experts and would probably be able to pinpoint the problem.

I had the first appointment a month ago,had another bone marrow biopsy and various blood tests and told by the consultant that MDS was suspected.I was shocked of course, and was horrified when I did the research online.

I had to go back yesterday (26th) for the results and have been told that my diagnosis is MDS Subtype RCMD with 3% blasts and IPSS score is 0.0, currently low-risk.I currently do not require any treatment,just a watch-and -wait basis with check-ups every 3 months.

After being told a month ago what was suspected,it was not a total shock today but i don't think it has really sunk in yet! Even though I am currently low risk, i am still scared what the future holds with this disease.

My only symptoms in recent times has been periods of fatigue and muscle pain/weakness.

It would be helpful to hear other patient's experiences.

Take Care

David Jacobs

[Jayne]

Hi David

Welcome to the forum.

I'm probably the worst person to welcome you as I am currently going through chemo and may end up scaring you more. But I feel great!

Your diagnosis and your low score are both positive. At least you know what is wrong with you, when and if your situation changes there are several different treatment options so you just have to believe that you will be here for a long time!

I hope you stay at RCMD for a long time. I was unlucky as my disease progressed relatively quickly, but that said I am now on the road to getting well and a cure, yippee!!!!

Jayne

[david j]

Thanks Jayne,glad you are feeling well,hope it stays that way and wish you all the best with your BMT.

Keep positive


I am still coming to terms with my diagnosis but feel okay.I know there is plenty of support available,especially on here,and I will benefit from that.

David

[Sarah Reakes]

Hi David,

I'm so sorry to hear of your diagnosis and it is perfectly natural to feel the way that you do. However, you're in very good company and it has to be said that when you go on the internet and google it, it can be very terrifying indeed simply because it is such a complex disease and with five different variants of MDS with varying high and low risk prognosis, it really can be alarming. It's a case of just too much information, with only a small part of it actually relating to your own condition.

I am also on a 'wait and watch' or as Chris prefers to call it 'active monitoring' regime and thankfully I have one of the lower risk forms of the disease i.e.: MDS with del 5q and I was diagnosed last year and believe me I went through all the emotional trauma you're now going through. You will settle into an acceptance mode, once you have taken back control of your life, and I'm sure you can do this in a number of ways. For instance by becoming more mindful of what you eat and drink - I'm a great believer in we are what we eat and so I have always eaten healthily but even I have fine tuned my diet, not only because of my MDS but because I also have an inflammatory condition and some other health issues, and I have found this has helped. I have also personally gone down the alternative health route by seeing a Herbalist which I know doesn't sit too well with the conventional medics but at the end of the day, what have I got to lose. I have no idea if this has actually made any difference to my MDS other than the fact that my bloods seem to be holding up pretty well and I have to say that I'm not as fatigued as I used to be, but then that might be just down to being positive about life again. I'm not saying this is what you should do but I think if you could focus on doing something that will help your whole being which is the Eastern way of treating the body, then you may feel more at peace with yourself and your condition. I believe in the power of meditation and relaxation as the mind can be responsible in so many ways in making a physical condition worst by getting stressed about it and at the end of the day, it is draining you of energy that you could use in a more positive way.

I suppose what I am trying to say and probably not very well, is that if you can refocus your mind on trying to regain control of your physical and mental state by whatever means works for you, then do it. For you it could be by doing more exercise or outdoor pursuits, or gardening, cooking, baking, etc, anything that rocks your boat, basically. As much as we rely on the medical profession to try and treat and/or cure us, at the end of the day, the way that we live and our general wellbeing is very much down to us. My husband and I went to the Penny Brohn Cancer Care Centre which is a charity which deals with complementary methods that can help cancer patients i.e.: relaxation and meditation, diet, exercise, massage, etc, etc, and we found it very helpful. We also met other patients who had various forms of cancer and we were all agreed that it really did enable us to deal with our health issues a lot better, and I now sleep like a baby.

It really is a case of not letting your disease define you. When I was first diagnosed I was in a state of shock and disbelief and even now, I get times when I think is this really happening to me, but then you just move on to the next thing you are doing and I really try not to dwell on it and put it to the back of my mind.

You might also be interested in what I have just posted on Nyanko's post relating to her Dad's very recent diagnosis which can be seen just above your 'experience' where I mention a case of a lady I know who has already survived 15 years (she is now 85) with chemo, blood and plasma transfusions throughout this time and she is still amazing. She doesn't even look her age; we hadn't seen her for a year and she still looked the same as when we saw her last time.

The one thing we must all do is not to lose sight of 'hope'.

I'm sorry to have rambled on a bit but I hope my comments may have helped a bit.

With very best wishes.

Sarah (Reakes)

[david j]

Hi Sarah,

Thank you so much for your response.What you have said is right and is very helpful and supportive.It is good to know that there IS some long-term survivors with MDS and we have to stay positive and believe that we will be one of them.

This is my third attempt at replying to this thread as I have so much to say,but the posts have been so long,i have been timed out and the posts have disappeared when I have submitted!.So I will keep this short for now.

Just wanted to say thank you.

Bye for now

David.

[Sarah Reakes]

Hi David,

I'm pleased to have been of some help.

What you're experiencing with being timed out has happened to me on several occasions in the past and it's so frustrating. What I have found has worked so far is that when I log in my name and password, I also tick the box that says 'log me in automatically etc" and since doing this I don't seem to have been timed out. So it might be worth a try. I have posted some quite long postings recently and so far so good. Alternatively, prepare what you want to say in 'Word' and save it as a document and then block the test, copy it and paste it. You block by holding down the shift key and and then use the downward arrow until all of the text is highlighted, then press Ctrl C to copy, then cancel the highlight by pressing any key (except delete of course otherwise you will lose it) and then log in to this forum to start your posting and press Ctrl V to paste. This also works as I have done it this way as well in the past.

All the very best to you and keep positive!

Sarah

[chris]

Dear David

Apologies for not responding sooner but have been on a little holiday and tried not to keep logging in while I was away!

Sarah and Jayne have shared their really useful outlooks on living with MDS. We have a really good supportive online community going here and I think we all feel it has been good simply to be in touch with others with the illness - even though it is very diverse and affects us all differently - it is still better than being totally isolated and worrying about the outcomes. The prognostic scoring system is now getting somewhat outdated in view of more recent treatments and better diagnosis so try not to be too demoralised by them!

Although you were not formally diagnosed with MDS until comparatively recently, from my own experience, I would guess that a lot of us have been gradually experiencing lowering of blood counts, but quite symptomless, for a number of years before diagnosis. It may even be the case that it cannot be identified in the bone marrow for a while. In my own case, before I became ill, I experienced about 7 years of repeated cellulitis (skin infections) in the lower leg but, being me, never went to the GP and therefore did not have any blood tests during that time.

Even when I was in the throes of many horrid symptoms (pleural effusions, bone pain, fatigue, weight loss, enlarged spleen and liver) during what I now know was the CMML (MDS sub-type) "kicking off", the bone marrow performed at that time did not reveal MDS. This only showed itself a year later on my 2nd bone marrow biopsy.

So, what I am trying to say is that you may have had MDS for longer than you think - which sort of reassured me as I was actually in normal good health for most of that time!

My spleen is also enlarged and that is being monitored by bi-annual ultrasounds - manual examination by the doctor being a bit prone to estimation. I also found out that enlarged spleen can lead to left shoulder pain through a referred nerve - so watch out for that!! Do you know how large your spleen is currently? And is it giving you any pain?

What is your haemoglobin count as that can relate to fatigue?

I hope you are feeling a bit less worried and do try to attend an MDS Forum which you will see advertised on this website. There is one in London every September and it is such a relief to meet other MDS patients and their families.

Best wishes

Chris

[david j]

Hi Chris

Good to hear from you and thank you so much for responding.As you say,i also must have gone a few years undiagnosed.When the consultant at King's gave me the diagnosis at the beginning of last week,He said that it had probably been "rumbling" (his words) on for a few years.I asked him why it had not been picked up on my last bone marrow aspiration and biopsy a year ago at my local hospital in Brighton.He said that it is not always detectable until it gets to a certain stage in the marrow.

As for my spleen,the enlargement was detected on an ultrasound scan that my consultant at Brighton ordered after one of my regular appointments last May.She did not say that she could feel it on the physical examination but must have suspected something to justify the scan.Another scan was done a few months later (last December),this time it was a CT scan on the abdomen,neck,thorax and pelvis to also check my lymph glands as well as the spleen.My spleen was unchanged in size since the ultrasound but still slightly enlarged at 14.5cm on the report.My lymph glands were normal.It was then that I was referred to King's and was told that they would probably be able to get to the root of my long-standing low blood counts.I never expected it to be anything as serious as MDS !

Strangely enough,I have recently been experiencing muscular pain in my left ribcage and shoulder blade which was worse on taking a deep breath.It lasted for about 3 weeks.I mentioned it to the consultant at King's but he didn't seem to think it was related to the spleen and he could not feel further enlargement.

My haemoglobin count has always been within the normal level.My neutrophils usually hover low, around 1.2/1.3 and platelets between 80-100.


I had another of my regular Haematology appointments earlier this week in Brighton.As the appointment at King's was only last week,they have not yet received the report,so i told them of my diagnosis.

My latest counts this week were, haemoglobin 13.7 (normal),WBC 2.7 (low),platelets 93 (low),neutrophils 1.3 (low),lymphocytes 1.3 (slightly low).

I have been in touch with Sophie Wintrich by email and there is an MDS patient support meeting at King's College on Monday 23rd April between 3 and 6pm.

I am hoping to attend and was wondering whether anybody else on the forum in the South East area will be attending?

Thanks again for replying Chris and I hope to keep in touch with fellow patients on here.

Must go now as i have dinner to cook!

Take Care

David.

[chris]

Hi David

The comment about the MDS not showing up in the bone marrow until it reaches a certain stage sounds sensible.

I, too,had pain on breathing deeply even when my spleen was only about 14 cm so I think that it presses on the diaphragm and somewhat reduces the lung capacity. I always thought it might be a consequence of both lungs being full of fluid for several months, nearly 4 years ago. Left shoulder pain is a known manifestation of enlarged spleen - not just my own theory!! I met a doctor at one of the Patient Forum meetings who explained that the nerve to the spleen also connects to the left shoulder and the body cannot distinguish where the pain is coming from! I expect the CT scan was to rule out lymphoma or any other nasties! I had one before my MDS was diagnosed when in fact nothing at all was diagnosed to explain the symptoms I mentioned. My spleen is steadily enlarging and is now 18cm - it has been 19.5 cm so I guess it must fluctuate. Liver also seems to be slightly enlarged but nobody seems to be bothered about it!

I personally feel very glad that my MDS is not yet affecting my red blood cells as I know from other patients how debilitating the consequent fatigue is. HB around 11-12 -not bad for a woman -, my platelets are around 75 and WBC around 2.8, neuts around 0.65. My "problem" is the monocytes count which is just over 1 most of the time which puts me into the MDS category of CMML. When I first read about CMML it gave out a median survival of 12-24 months. At age 59 and with a really fit, healthy lifestyle and a mother who was 80 at the time and in great health, I was not a very happy person - quite an understatement - I was very bitter, weepy and angry about it all. As long as I remain well, I now have come to some kind of mental way of living with it but any little twinges, changes to blood counts, waiting for results of BM biopsies etc still have the capacity to panic me but overall I am in a better place mentally than I was and am less anxious about things like risk of infection and bleeding as it has not turned out to be as bad as I thought it might.

I've replied elsewhere but I'm sure there will be quite a few going to the meeting and I hope you wil findit helpful to go if you can.

Best wishes Chris

[david j]

Hi Chris

The reason they always examine my lymph glands is because my only sibling (a sister) sadly died of secondary Hodgkins Lymphoma in 1986 aged 24,although Hodgkins is rarely hereditary.I'm told that MDS is also not related to Hodgkin's either.Just bad luck I suppose! My Mother had always been in excellent health until she first showed the early signs of PSP at 75 and was still working part-time in voluntary work.
My Grandfathers from both sides lived until they was 86 and 91 respectively and never had any blood-related disease.My Father is now 76 and thankfully still in good health and long may it continue.

I am wondering if my MDS has been caused by my work as I have worked in the manufacturing of metal parts all of my career and my first job during the 80's to the mid 90's involved a lot of metal dust in the atmosphere and various solvents were used with not very good health and safety in those days.I did mention this to the consultant and he said that there is thought to be a link with heavy metals and solvents
but it is impossible to say for sure whether that has contributed to my MDS.

Anyway,I returned to work today after 5 weeks off sick with stress due to my pending diagnosis.I found it helped a lot to take my mind off things and get back to some sort of normality.Although,I am still not sleeping too well but it is still early days.I have good days and bad days when I struggle a bit to keep positive but I must try to overcome that.

Hope all is still well with you.

Regards

David.