New Member, just diagnosed with MDS with deleted (5q)

[Sarah Reakes]

Hello everyone,

My name is Sarah Reakes, I was diagnosed on 13th July 2011 with MDS with deleted (5q). I have just celebrated my 60th birthday with my twin brother Nick, and I have older twin-sisters Kitty and Mary and an elder brother, Simon. I am married to my lovely husband Simon, and have one daughter, Nicola, and two step children, Sarah and Jonathan. I have six step-children of varying ages from two to eleven. We have two welsh sheep dogs (brother and sister) called Blue and Bella who are very special to us and cheer us up when we are down. We live in a village called Yatton, which is near to Clevedon, Weston-super-Mare and Bristol in the west country.

It has been very stressful time over the last two to three months trying to arrive at a final diagnosis after numerous blood tests, two bone marrow biopsies and numerous hospital appointments. At one time I was told that if I had the high risk MDS then I may only have 1-2 years, so to receive the final diagnosis that I had a low risk form of MDS with a life expectancy of up to 12 years was a great relief. I have been told that it can be managed with the drug Lenalidomide and I am on a 'watch and wait' treatment programme and I am due to see my Haematologist on 31st August to discuss where we go from here.

I spoke with Sophie Wintrich, Patient Liaison, today who was very helpful and she had already sent me a load of information from the MDS Forum which has proved to be very useful and enlightening. I have to say it all feels rather unreal.

If anyone else has a similar diagnosis, I would appreciate hearing from them. Also if anyone lives in the west country and would like to meet up that would be good.

Will close for now. Hope someone replies!

Best Wishes

Sarah Reakes

[janetstanford]

Welcome to the forum Sarah

yes it can be a stressful time not knowing we all have been on a roller coaster so to speak...and 2 lots of twins in your family what a busy time your mother had but what joy at the same time.....

i do not live in your area but please feel free to join in our posts should you wish even if just for general chit chat Chris Jayne June and myself do post a lot we seem to have a lot to say

Sophie seems to have helped you a lot and put your mind at ease which i am sure makes you feel better

i am low risk my main problem is blood production and i have transfusions 4/5 weekly
i am 52 have 2 children 18 boy and 16 girl 1 about to go to uni and the other going onto do A levels......

hope to chat to you soon take care Janet

[chris]

Hi Sarah

Thanks for your post. As I understand it, you have one of the types of MDS that is actually treatable very effectively with a drug (lenalidomide) which pretty much normalises the bone marrow. I bet you were so relieved to find this out after all the waiting and the bone marrow biopsies. It is quite a frightening time. I have met people with Deletion 5q- at the Forums that MDS UK organises and they all seemed very well on their medication. If you get a chance to go to any of the Forum meetings, I would urge you to do so.

Are you suffering any symptoms at the moment that led you to start the process of diagnosis? Hope you are keeping well.

Best wishes

Chris

[Sarah Reakes]

Hi Janet and Chris,

Many thanks for your replies to my message.

I have to confess to being totally ignorant as to which Forum I am supposed to write in, and when I was preparing my initial message, I lost two earlier versions because when I scrolled between 'preview' and 'submit' it disappeared, and so I nearly gave up all together, but I'm glad I persisted. I'm still not totally sure what I'm doing but I guess I'll get the hang of it.

In answer to your question Chris, the reason my GP referred me to a Haematologist was primarily due to abnormal blood counts ie: macrocytosis (enlarged blood cells) mild neutropenia (low neutrophil count) and mild anaemia (low haemoglobin count) and a very raised ESR spanning a 18 month period. At the same time I have been feeling generally unwell due to tiredness and muscle aches and pains, and very dry eyes, and I have had a very difficult menopause causing flushes/sweats and poor sleep for the past ten years. The funny thing is that when I received the MDS diagnosis I thought that would account for some of the other symptoms but apparently not. I have been told by the Haematologist that the aches and pains and tiredness and raised ESR has nothing to do with my MDS and so I am also being investigated by a Rheumatologist for an imflammatory auto-immune problem which may well account for these other symptoms. At the moment he has suggested it could be 'Sjogren's Syndrome' and I have had a number of blood tests and x-rays done and am due to see him again on 3rd October.

On top of that, in 2008 I developed an electrical fault with my heart called 'Left Bundle Branch Block' which apparently is not life threatening, and I also suffer with sporadic palpitations of varying severity, and so I am being monitored by a Cardiologist for this. Because there are these other things going on, it really is difficult to know which condition is responsible for the way I feel at times.

Chris, can you tell me, which form of MDS you have?

I am intending to go to the MDS Patient Forum on Friday 30th September with a friend. My husband is unable to accompany me as he would have had a new knee operation on 17th September and not in a fit state to travel.

Anyway, had better close for now as it's time to get dinner on the table.

Best Wishes to you all.

Sarah Reakes

[chris]

Hi Sarah

Don't worry too much about where to post and your first posting in the "say hello and general messages" was fine. Sophie looks at the Forum from time to time and if she feels that a subject needs to go elsewhere, she will move it!! You can preview what you have written any number of times before you click on Submit but don't try to come out of the message you are writing (e.g. to go onto another website) or you'll lose it all!!! If you click on PM (Post message) the reply wil not show on the forum but will go straight to the e-mail address of the person you are replying to - useful if you want a private conversation..

When you have other medical issues it is hard to see the wood for the trees but most people on this forum who are suffering from the sub-types of MDS that affect the red blood cells will cite fatigue as being the No 1 symptom. There also seems to be a big range as to when different people will feel fatigue so some people will function quite well at an Hb level which would really incapacitate others. I hope you soon get your other diagnoses sorted out as it is good to get the answers! Pity you had to endure 2 bone marrow biopsies to arrive at the diagnosis. Poor you!

My diagnosis is that I have something similar to an MDS sub-type called CMML which is partly MDS and partly a myeloproliferative disease so it's called MDS/MPD! I share some of the symptoms with other types of MDS - neutropenia and low platelets - but am currently spared the red blood cell problems. I've written various posts about it elsewhere on the Forum if you were interested.

Glad you are coming to the London Forum and shame your husband won't be fit enough for the journey as he will be testing out his new knee! Will see you there. It's a pity that you only just missed one in Exeter but no doubt there will be more there - usually one a year for the bigger ones. Are you going to a specialist centre for your MDS or your local hospital?

Take care

Chris

[meerkat]

Hello Sarah

I thought I'd respond to your post as I also have 5Q-, diagnosed over 4 years ago.
It took me quite a long time to accept my altered health position, but for now I just have a perfect excuse for my slothful attitude to life!

I am 57 now and work 4 days a week. I became transfusion dependent about 1 year after diagnosis, following a trial with EPO, which, as anticipated, didn't help. I started iron chelation about 16 months later, which was actually less hassle than I expected.
The best bit though is that when my ferritin levels came back down, then this seems to have kick-started my marrow a bit. So although I am still officially anaemic I haven't needed any blood for over a year now, which of course is great. And the chelation has also stopped. No transfusions = no chelation. So life's not too bad.

Other people have mentioned lenolidamide. This I believe is widely used in the US and mainland Europe for 5Q-. My MDS specialist though, who I see twice a year, wants to see more long term efficacy results for the drug before recommending it for someone still relatively young. I have to be guided by his advice. I think the PCT would have to be approachd for funding too, as the drug is not yet recognised by NICE, as a treatment option for MDS. (I hope this info is correct!)

So although I am now 'hooked up' to local and regional health services my MDS is fairly benign and doesn't interfere too much. I do hope you get the right care and treatment for your health symptoms quickly then you can start to get your head round it all. I think that was probably the most challenging part of the diagnosis for me.

Be kind to yourself

[chris]

Thanks for your post meerkat! That will be very helpful to Sarah I'm sure when she is considering treatment options -or not!

Amazing! I thought you had missed the Exeter meeting, Sarah, but look, there's another one set up for 11th October - Check the Regional meetings topics but details below. Hopefully, that is not too far for you?

By the way, I have just found out that you can save a draft of a reply and then go back into your User Control panel and click on Manage drafts and, hey presto, it's there again!! Why haven't I done this before?!

Best wishes

Chris


Location Royal Devon and Exeter Hospital
Reception Yarty Ward, Barrack Road

Starting 6pm - Finishing 8pm

For registration, please contact Tania Davidson on 01392 402879

[Sarah Reakes]

Hi Chris and Meercat,

Really pleased to hear from you both.

Firstly, Chris, thanks for the useful tips on how to use the Forum - Sophie has also given me some info and mentions using the 'User Control Panel' which I didn't even know was there. I will spend some time exploring and playing with it.

Also thanks for the information regarding your condition - I will certainly look up the posts you have written. I had no idea there were so many other variants of MDS in addition to the five main sub-types. I guess you can understand why it is difficult to fully diagnose MDS and related disorders!

On the subject of where I am being treated; I am currently being seen at Weston General Hospital which has a small Oncology/Haematology Department which works alongside the larger Bristol Royal Infirmary (BRI). Unfortunately the nearest MDS Specialist Centre is in Cardiff or Bournemouth. I did speak to Sophie about this and whether I should ask for a second opinion or ask to be referred to a Specialist Hospital and it was left that I shall speak with the Consultant at Weston when I see him on 31st August to find out whether they have the expertise to treat MDS and/or confer with Specialist Hospitals on the most appropriate treatment plan. I know that the BRI have a very strong Oncology Department and also specialise in stem cell and bone marrow transplants for other forms of blood and bone marrow cancers but according to Sophie they have not, as yet, requested to be given MDS Specialist Centre Status, so assume they don't consider that they have sufficient expertise, which is a shame. I shall have to wait and see what he says on the 31st August and make a judgement then.

Very grateful to you for the info on the Exeter Forum on 11th October as I had assumed that as I had missed the one in June, that was it. Will definitely try and go to that one as well.

Secondly, thank you Meercat for sharing your experiences regarding your 5q-, it really is useful to know how the condition affects others, and the treatment they are given. I was surprised when you said that Lenolidamide was not recommended by your MDS Specialist as my Haematologist has indicated that this is what he intends to use if/when my bloods deteriorate and that he doesn't envisage that I will need blood transfusions. Certainly he led me to believe that Lenolidamide is now a recognised form of treatment for 5q- within the NHS but I guess I will find out more on the 31st August. You mention that you see your Specialist twice a year; how often do you have blood tests taken, and are these done through your GP? Do you go to a MDS Specialist Hospital or your General Hospital?

I agree with your comments regarding the need to feel back in control of one's life which can only be achieved when you know what your are dealing with. Regrettably, as so often happens at our age, it isn't just one condition that you have to deal with and you can often feel as if you are passed from pillar to post from one area of expertise to another in attempt to get a diagnosis and/or treatment. And if the various medical departments don't communicate with each other or your GP, it can make you feel very lost. It would be good if we could be looked as a 'whole' rather than 'individual parts' which is of course how other forms of medicine look at the body ie: holistic/alternative medicine. I think this is why patients can often fall between the gaps created between referral to one medical department or another, when symptoms are not properly identified or are just missed.

The one common thread from all of the MDS patient information I have read is that the first hint that something is wrong is the awful feeling of lethargy/fatigue, and yet I have been told by my Haematologist (and I have read this elsewhere) that patients do NOT normally have any symptoms during the early stages of MDS (based on my abnormal blood results, I have probably had it for about 18 months). Chris also mentions this in her posting, and of course there are not two people alike, and of course if you then then factor in the possibility of other health issues going on as well (menopause symptoms with disrupted sleep etc), and other debilitating conditions, then of course it starts to take its toll on your wellbeing. It's so easy for the medical profession to make sweeping statements but at the end of the day it's only based on the accuracy of medical data collected from previous cases. Unless you have the condition, how on earth can they be in position to speak authoritatively. The one thing I have found so encouraging is to read the experiences of others, as you don't feel alone and you also feel vindicated because at times the medical profession have a wonderful habit of making you feel neurotic and wasting their time, and it's not until a serious condition is finally identified that they start to take you seriously.

Anyway, I have had a good old moan and got that off my chest. It's good to share feelings and to be able to express oneself.

Best wishes to you both and thank you once again for responding to me.

Sarah R

[janetstanford]

HI Sarah,Chris and Meerkat

Sara a good moan makes us all feel better and i do agree with your comments esp the ones about being alone and how the medics can make you feel neurotic so true at times, being tired is my first symptom and at least the nurse i see agrees as bloods go low i sleep longer have to sit more and certainly do less ..good you are finding the forum useful

Meerkat
i found your post interesting you are similar to myself transfusions iron ect ..i have questions for you which i shall post later ( time an issue at the moment )...i take exjade every day iron is coming down and as with you all others grew back over time except the blood cell ...a couple of years ago i read that with time you can recover and the transfusions stop at the moment i have 2/3 units every 3/4 weeks the odd time i go 5 weeks which is what is going on this week should have been last week but it will Friday this week ....

Well must go have things to do be back soon KEEP WELL Janet

[meerkat]

Hello again

I have just, coincidentally, attended one of my twice yearly appointments with my MDS expert. He tells me that Celgene, which manufactures Lenalidomide, are planning to resubmit the drug before the European Medicines Agency (EMA) with the hope that it will get accepted as a treatment option for certain types of MDS. If the EMA accept it, then NICE are more likely to follow suit.

However he added that in our region, (Yorkshire) the Regional Cancer Network Group is already funding this drug if the physician determines that it is the most appropriate treatment option. Which means the PCT, or whoever the commissioning group may be, are not called upon to decide whether to approve the cost. This may be the case in other areas of the country as well. (Sorry I didn't ask)

Bye for now