Hi Janet,& Chris just to let all know I went to see Dr Killick yesterday & I am to have bone marrow biopsy on Tuesday she seems to think it could be Myelo fibrositis I looked it up on the web & It seems to be virtually the same as MDS does anyone know anything about it. Seems to be more to do with the spleen However I will know which it is in a couple of weeks
June
Quick note
This condition is called Myelofibrosis
Patient Liaison
myelofibrosis
Moderator: Steering Committee
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juneadams
myelofibrosis
Last edited by Sophie on 05 Dec 2011 14:04, edited 1 time in total.
Reason: Correction
Reason: Correction
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janetstanford
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Re: myelofibrositis
Hi June
sorry not my area ...only thing i know about the spleen is there is a condition where the spleen is enlarged and can use up / destroy blood and white cells ect the name????? escapes me ....Chris is lot more knowledgeable than me she may know more .....
as it is similar to mds why dont you private message Sophie sure she will be able to help and get you the info you need and she would be able to set you on the right road give you questions to ask about treatment ect....that will save you getting lost in the maze of google.....(which is where so many of us end up meeting ourselves coming back
)......
bone marrow bi-op best advice i can give there is ask for the drugs it helps....
hope you are well any worry need an ear i am here i may talk a lot but it may help ????
please take care Janet
sorry not my area ...only thing i know about the spleen is there is a condition where the spleen is enlarged and can use up / destroy blood and white cells ect the name????? escapes me ....Chris is lot more knowledgeable than me she may know more .....
as it is similar to mds why dont you private message Sophie sure she will be able to help and get you the info you need and she would be able to set you on the right road give you questions to ask about treatment ect....that will save you getting lost in the maze of google.....(which is where so many of us end up meeting ourselves coming back
)......bone marrow bi-op best advice i can give there is ask for the drugs it helps....
hope you are well any worry need an ear i am here i may talk a lot but it may help ????
please take care Janet
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juneadams
Re: myelofibrositis
Your advice Janet is very much appreciated what I looked up, so far I can see no difference Between it & MDS I will email Sophie & let you know the result
Take great care
June
Take great care
June
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janetstanford
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Re: myelofibrositis
Hello June
good luck i know contacting Sophie is best will look forward to next post
hope you are well ect, time for sleep i think had a busy few days and a sleepless night after transfusion too much energy !!!! mind the kitchen cupboards and dinning room are spotless
best wishes Janet
good luck i know contacting Sophie is best will look forward to next post
hope you are well ect, time for sleep i think had a busy few days and a sleepless night after transfusion too much energy !!!! mind the kitchen cupboards and dinning room are spotless
best wishes Janet
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chris
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Re: myelofibrositis
Hi June
Thinking of you today as you have your bone marrow biopsy. Is this your first one? Not a pleasant experience I'm afraid! My first one, performed by the consultant haematologist, was only mildy uncomfortable. The second one, performed by a registrar, took me by surprise and I yelled a lot - was very embarassed afterwards on emerging to a full waiting room outside !! Usually quite good with pain but this was awful. Would ask for sedation if I had to have another one!! But it is the only way to get a definitive diagnosis of all sorts of bone marrow disorders. I hope the wait for results is not too long but I understand they will need to do various genetic tests which do take a while to carry out so it may be a few weeks for the full results, even if the initial ones can give an indication.
Lots of sites giving information which you have already found. An enlarged spleen seems to be one of the key symptoms so have you been told that yours is enlarged? It can be found by manual examination but, because it is usually tucked up under the ribcage, a slight enlargement can usually only detected by ultrasound/ CT scan. Enlarged spleen is also a symptom of some types of MDS and various other diseases and is something that I suffer with - my particular sub-set is not standard but thought to be closest to CMML (Chronic Myelomonocytic Leukaemia). Although myelofibrosis is similar to MDS in that bone marrow is not working as it should, it doesn't come into the same group of diseases. Sophie may have contact details for other patient support groups but, difficult though it is, the best thing is to wait and see what the diagnosis is otherwise you may expend a lot of mental energy and worry unnecessarily!
Your diagnosis has been a bit of a question mark for a while so it will be good to finally get to find out from the expert and lucky for you that Dr Killick is on your doorstep!
Hope today goes well.
Chris
Thinking of you today as you have your bone marrow biopsy. Is this your first one? Not a pleasant experience I'm afraid! My first one, performed by the consultant haematologist, was only mildy uncomfortable. The second one, performed by a registrar, took me by surprise and I yelled a lot - was very embarassed afterwards on emerging to a full waiting room outside !! Usually quite good with pain but this was awful. Would ask for sedation if I had to have another one!! But it is the only way to get a definitive diagnosis of all sorts of bone marrow disorders. I hope the wait for results is not too long but I understand they will need to do various genetic tests which do take a while to carry out so it may be a few weeks for the full results, even if the initial ones can give an indication.
Lots of sites giving information which you have already found. An enlarged spleen seems to be one of the key symptoms so have you been told that yours is enlarged? It can be found by manual examination but, because it is usually tucked up under the ribcage, a slight enlargement can usually only detected by ultrasound/ CT scan. Enlarged spleen is also a symptom of some types of MDS and various other diseases and is something that I suffer with - my particular sub-set is not standard but thought to be closest to CMML (Chronic Myelomonocytic Leukaemia). Although myelofibrosis is similar to MDS in that bone marrow is not working as it should, it doesn't come into the same group of diseases. Sophie may have contact details for other patient support groups but, difficult though it is, the best thing is to wait and see what the diagnosis is otherwise you may expend a lot of mental energy and worry unnecessarily!
Your diagnosis has been a bit of a question mark for a while so it will be good to finally get to find out from the expert and lucky for you that Dr Killick is on your doorstep!
Hope today goes well.
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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janetstanford
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Re: myelofibrositis
Hi June
I do hope all went well today and it was not as uncomfortable as expected ....i am sure you are braver than me i had to have my hand held.....but i progressed and at my last 1 there were 6 people in the room the doc the sister a trainee doc trainee nurse (because they had not seen 1 before ) and the other half as well .... why i allowed this i have no idea ....
it is as Chris says a means to an end and once you have the results the way forward will be found
i am sure even if it is not mds you can still if you want be a member of the forum ...sure we can all still help and support you and you us
hear from you soon Janet
I do hope all went well today and it was not as uncomfortable as expected ....i am sure you are braver than me i had to have my hand held.....but i progressed and at my last 1 there were 6 people in the room the doc the sister a trainee doc trainee nurse (because they had not seen 1 before ) and the other half as well .... why i allowed this i have no idea ....
it is as Chris says a means to an end and once you have the results the way forward will be found
i am sure even if it is not mds you can still if you want be a member of the forum ...sure we can all still help and support you and you us
hear from you soon Janet
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juneadams
Re: myelofibrositis
Hi Janet & Chris
The Doctor was great very helpful, I was so relieved after I called him a Star he must have thought this old lady was a bit touched in the head any I will head his fan club
All went brilliantly no pain at all just a little tugging sensation, when he took the chunk out. drawing up the liquid was fine, the most hurt was when he put in the anesthetic that was like a bee sting, However I asked if it looked normal but he said no
it was too thick & sluggish & the bone marrow chunk didnt look right So I am thinking Myelofibrosis & that was his guess... 10days time roughly all will be settled I dread in one way that they find nothing because that means having to start all over again with tests, I just want it settled its taken 16months to get this far.
Yes I would dearly like to stay with this forum if I am allowed this fibrosis seems to follow exactly the same pattern as MDS I will ask DR Killick what the differences are.
Janet you said in one of your posts that you controlled your bloods how do you manage that. mine is HB 8.7 & white 2.4 today
Hope today is one of your good days
June
The Doctor was great very helpful, I was so relieved after I called him a Star he must have thought this old lady was a bit touched in the head any I will head his fan club
All went brilliantly no pain at all just a little tugging sensation, when he took the chunk out. drawing up the liquid was fine, the most hurt was when he put in the anesthetic that was like a bee sting, However I asked if it looked normal but he said no
it was too thick & sluggish & the bone marrow chunk didnt look right So I am thinking Myelofibrosis & that was his guess... 10days time roughly all will be settled I dread in one way that they find nothing because that means having to start all over again with tests, I just want it settled its taken 16months to get this far.
Yes I would dearly like to stay with this forum if I am allowed this fibrosis seems to follow exactly the same pattern as MDS I will ask DR Killick what the differences are.
Janet you said in one of your posts that you controlled your bloods how do you manage that. mine is HB 8.7 & white 2.4 today
Hope today is one of your good days
June
Last edited by juneadams on 26 Jul 2011 21:07, edited 1 time in total.
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janetstanford
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Re: myelofibrositis
Hi June
have to say i have been checking for your post think i was concerned
...glad all went well and the bee-sting yes must have been in the hand 
ooh i have had a few of those know what you mean ...
and how Yuk you asked what it was like you are braver than me i never did that ..was glad that it was finished and they left me to recover...you may have an ache in that area over the next couple of days but a couple of pain killers and you will be fine i also found sitting on a cushion helped ease the pressure 
.....
sluggish bone marrow mine was rare as not producing much of anything at the start but that has improved ....
well at least in ten days you will have the results and even if it is not that at least that counts one out and 1 less to worry about ....sure the doctor will investigate until they come up with an answer
my blood counts yes i manage my counts?transfusions but that is another post so i will do 1 over the next couple of days ...
can i ask why do you have transfusions take iron ???? ect
right time for CSI Miami must go back soon
take care Janet
have to say i have been checking for your post think i was concerned
...glad all went well and the bee-sting yes must have been in the hand ooh i have had a few of those know what you mean ...and how Yuk
you asked what it was like you are braver than me i never did that ..was glad that it was finished and they left me to recover...you may have an ache in that area over the next couple of days but a couple of pain killers and you will be fine i also found sitting on a cushion helped ease the pressure .....sluggish bone marrow mine was rare as not producing much of anything at the start but that has improved ....
well at least in ten days you will have the results and even if it is not that at least that counts one out and 1 less to worry about ....sure the doctor will investigate until they come up with an answer
my blood counts yes i manage my counts?transfusions but that is another post so i will do 1 over the next couple of days ...
can i ask why do you have transfusions take iron ???? ect
right time for CSI Miami must go back soon
take care Janet
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juneadams
Re: myelofibrositis
just a quick reply Janet I have not had any transfusions yet the Doctor today did ask me why not he seemed to think it was needed but Dr Killick wanted to wait for the results & Iron was not needed as I have enough.
yes Chris the spleen is enlarged & has been uncomforable over the past year but I didnt realise what the cause was
June
yes Chris the spleen is enlarged & has been uncomforable over the past year but I didnt realise what the cause was
June
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janetstanford
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Re: myelofibrositis
June
see your on the forum so i just had to check (glad of the adverts)
Yes answers are useful ..... your counts seem a little low and i understand why the doctor has suggested transfusions....
i shall post you info over the next couple of days ...but as we are not all the same although similar i would strongly suggest you get in touch with Sophie who can i am sure give you info on the whys and reasons of blood transfusions ect which will help
oops adverts finished back soon
what am i like
....Janet
see your on the forum so i just had to check (glad of the adverts)
Yes answers are useful ..... your counts seem a little low and i understand why the doctor has suggested transfusions....
i shall post you info over the next couple of days ...but as we are not all the same although similar i would strongly suggest you get in touch with Sophie who can i am sure give you info on the whys and reasons of blood transfusions ect which will help
oops adverts finished back soon
what am i like ....Janet
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