Hello - newly diagnosed and feeling isolated

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

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janetstanford
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Re: Hello - newly diagnosed and feeling isolated

Post by janetstanford » 22 Mar 2013 08:17

HELLO
Good to hear that you are feeling comfortable with the forum :D and yes we all understand a very select group i believe
I am well schooled in Ferritin have been since 2009 at one point the doc had me so paronoid about it i used to ask the nurse who did my bloods to add it to the test :!: :!: :!:
Please remember what i type is specific to me as each case is treat on its own merits (so to speak )
iron tablets are given for anemia ...
there are 2 types of iron hume and non hume(spelling) 1 you get from food the other is transfused the body has issues getting rid of this stuff ....
Ferritin overload can happen after you have been transfused 15-22 units approx ...there are drugs which can help the body dispose of it ...normal iron is 200-400 in 2009 mine was 6000+ seriously overload has it own symptoms from muscle ache to the more serious i was prescribed Exjade which i still take daily 2gms the amount is prescribed as a percentage of your BMI...
in august mine was 2200 and then in November it was 1400 a big drop so over the last few years the meds have got rid of the build up and what has also been transfused into me since and i believe once it gets to 1000 he will reduce the amount i take daily
there is a section on this in the MDS book 101 questions ask sophie she may be able to give you a copy also if you search the site look for posts by Meerkat as she has overload as well but is on different drug to me .....hope this helps and i have explained clearly and not confused you but Dr Google will be able to help :)
and the Doctor not helping with support /forums ect same here i believe most just handle the medical side i was quite shocked at the reaction from mine when i took some info Sophie had sent me on MDS
and knowing your sub group i think it would be good to know that way you can get the right answers to your questions anyway thats me far too curious for my own good :lol:
Anyway glad your feeling good take care :D
chris
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Re: Hello - newly diagnosed and feeling isolated

Post by chris » 22 Mar 2013 20:16

Dear Claire

Regarding your questions:

Janet has described her own situation of having a problem with too much ferritin due to having to have lots of blood transfusions. Iron builds up in the body and needs to be treated to reduce it. Your situation is entirely the reverse i.e. you have low levels of ferritin so they are giving you iron supplements to improve the ferritin levels.

There are many different categories of MDS; these are called sub-types. Knowing your sub-type will help you when you do decide to pursue any questions you may have. It can help to show if your MDS is going to need treatment or just be monitored for a while. You will also need to know about whether your chromosomes are normal or if there are any odd things about them as this can also dictate the severity of your MDS. These are results that the doctor would know about from the bone marrow biopsy which I assume you had?

Not being given much information by your doctor is sadly quite common and we in this support group are working hard to improve this situation.

There are a range of different treatments for MDS and discoveries about MDS are coming forward all the time so, yes, there is hope. Do talk to Sophie more as and when you need to.

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
clareybabs
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Re: Hello - newly diagnosed and feeling isolated

Post by clareybabs » 23 Mar 2013 00:58

:P Hi there claire, i was diagnosed with MDS in november, high risk group, needing regular blood transfusions and a stem cell transplant, i felt exactly like you - my consultant didn't give me any information about what MDS was as he didn't specialise in it, all i got was a pamphlet to read which had about 4 lines in it and told to go on internet if needed. I was referred to freemans at newcastle a specialist transplant centre, wasn't given any info about MDS until dec 17th, few weeks about six weeks after diagnosis, which was shocking. As you can imagine i surfed the net and read things i didn't particularly want to read, infact it was probably the worst thing i could of done. I acutally just came across the MDS support group, by chance, again surfing the net, thank god i did, the support you get from other people is amazing, you suddenly feel as though you are not alone, people are actually going through what you are. It's great too sound off on hear as well. My life has changed considerably, the beginning of november i was working as a staff nurse on a busy medical ward, after nearly collapsing at work with a HB of 4.0, life threateningly low, i was taken into hospital - given 6 units of blood, bone marrow biopsy etc etc and diagnosed. Since then i have had to leave work , as not energy, and no immunity, requiring blood transfusions every 2 weeks, i've had 20 units in total. So been on sick 5 months now - pay will go down to half pay end of april. So wish i could just go back to work - but know that's not gonna happen for a while.

Anyway i'm having my stem cell transplant on 10th april, so great news there.

If you need anyone to talk to, just send me a post or e-mail, anytime x Continue everything that you would normally do, when you have ur appointments just ask loads of questions, but try not to go on internet too much as you may scare yourself, just use this sight for the time being. Take care, clareybabs xx
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
Claire
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Re: Hello - newly diagnosed and feeling isolated

Post by Claire » 23 Mar 2013 09:27

Hi everyone!

Thank you all for taking the time to reply to me. I really appreciate it. Good luck Claireybabs for your transplant in April. You must be very relieved to have a date sorted.

Strangely enough I had a letter from my consultant yesterday which gives a little more detail about my condition. I know now that it is definitely low-risk (so I know I am very lucky). I have refractory neutropenia and my chromosomes were normal.

My ferritin levels are very low - they are only 11 :o. Apparently there is very little stainable iron in my bone marrow. I did have a biopsy back in November - the results took ages to come through. I had to wait until 8th March for everything.

I will stay in touch and wish all of you luck.

Take care

Claire xx
chris
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Re: Hello - newly diagnosed and feeling isolated

Post by chris » 23 Mar 2013 15:09

Hi Claire

Good to hear you now have an " Official" letter with your diagnosis and now you know your sub-type! That was going to be my next suggestion - to get a copy from your GP!

I wondered also whether it might be helpful for you to find out what your neutrophil count is. This will be on your blood test results - maybe that was also on the letter? Basically, if you have a low neutrophil count, you are more prone to getting infections - either from people or from certain foods which are more risky than others. You mentioned that you were a teacher so clearly you work in a more "germy" place than others - especially if you work with younger age group children who are a hot-house for infections!! It might be useful to use quite a bit of antibacterial hand gel while you are at work to help reduce the infection risk. Depending on how low your neutrophil count is, you might also want to check out which foods might be avoided. There is a good information sheet which was sent out with the last Newsletter - ask Sophie or read it online. Here's a link:

http://www.mdspatientsupport.org.uk/wp- ... rition.pdf

I am only telling you this, not to worry you any further but because, in my experience, doctors did not tell me any of this and I would personally rather avoid an infection than get ill and have to be treated for one! My neutrophils are usually around 0.5 - though I recently achieved the dizzy heights of 0.78!!

Take care and keep in touch.

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
Claire
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Joined: 19 Mar 2013 17:25
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Re: Hello - newly diagnosed and feeling isolated

Post by Claire » 23 Mar 2013 15:44

Hi Chris

My neutrophils are currently 1.2. I have had unexplained neutropenia (well I guess I know the reason now!) for quite a number of years (0.7 has been the lowest so far). I was under the haematology department for monitoring of this situation for a long time and also had GCSF injections for a couple of years as I was very prone to infections and various symptoms.

My first biopsy was back in 2004 and it didn't pick anything up. This is probably why I was surprised to be diagnosed in December with full confirmation in March. This was following another biopsy in November last year due to feeling so poorly again and neutrophils once again dropping. My consultant thinks I may have had MDS for a few years already.

Thank you so much for the link to the food list. In all the time I have been neutropenic I have never thought or been told about foods to avoid. So thanks again for this. I will read in a minute (hope my favourite foods aren't on there!!).

Yes I am in a germy environment and so I suppose I am doing well not to suffer more ailments than I do :D. I have always been a little obsessed with hand washing so have that covered!

Thanks as well for pointing me towards the latest newsletter. I only had last year's copy. Are you the editor by the way?! Well done if you are - it's a very informative newsletter.

Take care

Claire
AlanF
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Re: Hello - newly diagnosed and feeling isolated

Post by AlanF » 23 Mar 2013 17:55

Hi Claire
I've just posted on Gavin1976 with details of Theresa's situation if you would like to read and chat about anything feel free,
Kind regards AlanF
AlanF
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Re: Hello - newly diagnosed and feeling isolated

Post by AlanF » 23 Mar 2013 18:30

Thanks Claire,
Still haven't got to grips completely with the practicalities of how to use the forum myself yet but I'm sure Gavin won't mind the 3 way chat!!
Alan
janetgreen
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Re: Hello - newly diagnosed and feeling isolated

Post by janetgreen » 23 Mar 2013 19:50

Hi Claire,

Sorry I haven't been on here for a while as my husband, Ken, had a stem cell transplant in December. I have just read your posts and we were very much in the same position as yourself when Ken was first diagnosed as I don't think his consultant had ever come across MDS before.

When the news had a chance to sink in, we went to see Prof Bowen at Leeds and that was great to speak to someone who knew so much but could still tell you things about it that you could understand.

I have found the Forum invaluable and such a great support.

Janet and Chris are a great support and a fountain of knowledge. There are so many variations of MDS that you do have to pick and choose what you relate to with the information on the internet.

Claire - good luck for your stem cell transplant too.

Janet.
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
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Re: Hello - newly diagnosed and feeling isolated

Post by chris » 25 Mar 2013 12:36

Hi Claire

I think we have a confusing situation on this forum at the moment as there is another Claire (posting as Claireybabs!!) who is due to have a stem cell transplant soon but this Claire (i.e. you!!!) isn't!!! ( In case you thought you were going mad!!) There are also 2 Janets, a couple of Grahams and a few Johns!!! It can be confusing! Putting on a signature can help so that people get to know which one you are. There are instructions for putting on a signature in a topic set up by Sophie!

Claire - your neutrophils at 1.2 don't seem to be too worrying - though still below the 1.5 which is termed Grade 1 neutropenia. Below 0.5 is termed "profound neutropenia" and you would have to be extra careful with foods - hope there were not too many of your favourites on there!! No more raw oysters for you, milady!! You are being very sensible with all the handwashing. I have personally instigated a no social kissing rule - which I think has cut down a lot of potential infections. Everybody these days -even if you don't know them very well - seems to want to plant a wet, slobbery smacker on your face and you never know if they might be incubating an infection. Plus of course all the people who sneeze or cough without attempting to cover their mouths. AS you can tell, having neutropenia has given me a different view of the world!!!

Yes, my claim to fame is that I do edit the Newsletter! Thank you so much for your complimentary comments. It is quite a difficult task to make it readable - given all the complex medical terminology that is part and parcel of our condition. The lovely doctors who write the articles are very forgiving when I hack out so much of their medical terminology!!

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
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