myelofibrosis
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Re: myelofibrositis
Hi June could do with that magic up north rained since 9 this morning glad you helped raise lots cash and it will i am sure be well spent
Sorry to hear about the spleen Chris now you but at least her result was wrong ..tell me how can the doctor help ???? and sorry to hear you had a sleepless night sure you will discuss all this with your gp
your blood count 107 ??? i am confused i get mine in units last week 8.5 ..so if yours is 107 what does this mean on a scale of 8 to 14 were would you be in units
also down 4/5 a week ?? sorry i may sound stupid but i am confused can you explain
and yes 10 days thats about how long i feel normal then slowly you start to come down slowly at first the in week 3-4 it is rather rapid
well glad your back on stite hear from you soon bye janet
Sorry to hear about the spleen Chris now you but at least her result was wrong ..tell me how can the doctor help ???? and sorry to hear you had a sleepless night sure you will discuss all this with your gp
your blood count 107 ??? i am confused i get mine in units last week 8.5 ..so if yours is 107 what does this mean on a scale of 8 to 14 were would you be in units
also down 4/5 a week ?? sorry i may sound stupid but i am confused can you explain
and yes 10 days thats about how long i feel normal then slowly you start to come down slowly at first the in week 3-4 it is rather rapid
well glad your back on stite hear from you soon bye janet
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Re: myelofibrositis
Hi June
Yes, also sorry to hear that the ultrasound caused you so much pain and that you have quite a lot of pain in your ribs all the time? Just keep mentioning it to your doctors as it may be significant information for one of them! I hope the pain has eased off now?
It's a pity that the ultrasound person didn't give you the exact measurement as statements about it being "25% larger than normal" beg the question "What is normal?" All the information I have read is that a normal adult spleen is up to about 10-12 cm in length. Therefore, 17cm would be quite enlarged and 50% larger than normal. You could ask your GP for a copy of the ultrasound report and then you would be able to see what it says i.e. an exact measurement and not an interpretation?
Glad you had a successful (and dry!) day.
Janet - hope your mother is feeling better and that your daughter's exam results were OK? Is she the one going to Uni this year or was that your son? Hope all that is settled? Glad I am through all that - though, having said that, mine are in their 30s and still taking exams so it never ends!!
Take care
Chris
Yes, also sorry to hear that the ultrasound caused you so much pain and that you have quite a lot of pain in your ribs all the time? Just keep mentioning it to your doctors as it may be significant information for one of them! I hope the pain has eased off now?
It's a pity that the ultrasound person didn't give you the exact measurement as statements about it being "25% larger than normal" beg the question "What is normal?" All the information I have read is that a normal adult spleen is up to about 10-12 cm in length. Therefore, 17cm would be quite enlarged and 50% larger than normal. You could ask your GP for a copy of the ultrasound report and then you would be able to see what it says i.e. an exact measurement and not an interpretation?
Glad you had a successful (and dry!) day.
Janet - hope your mother is feeling better and that your daughter's exam results were OK? Is she the one going to Uni this year or was that your son? Hope all that is settled? Glad I am through all that - though, having said that, mine are in their 30s and still taking exams so it never ends!!
Take care
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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Re: myelofibrositis
Hi All.
Well I am back from holiday and it seems I have missed quite a bit! I am so relieved your spleen reading is now sorted Chris, like others I agree it is unforgivable that they can get it wrong. June, I also have sore ribs, have done for a few years now, ie if I lean over a wall and I then stand up, as the pressure of the wall is released it gives me loads of pain. Never thought to mention it, but perhaps I should.
My Hb reading before I went away was 81 (8.1). I know Janet said before I went that she would be booked in for a transfusion the next day if it was her. I dont know why or how, but I feel fine. I have been ok on holiday, and even felt I was one of the more active Mums, playing on the lilo with my children and diving in etc. We also went on a jeep safari which was a full day (0830 - 1930) and then went on to a Turkish Evening. Dont really like the Turkish Evenings but I felt great! I obviously slept til I woke up (so missed breakfast quite a few times), and was on my sunbed a lot, but even so I feel normal. I do plot my readings on a graph and they are definitely on a downwards trend.....my next challenge is to get to Christmas feeling normal.
We have just bought a cross-trainer, its of gym quality so once I have caught up on here I am going to put an exercise programme together. It will only last half an hour, I feel this is the best amount of time to allow me to do it daily because once I go back to work tomorrow my time will be a bit full, what with doing tea etc.
Anyway, love to all.
Take care, good health!
Jayne x
Well I am back from holiday and it seems I have missed quite a bit! I am so relieved your spleen reading is now sorted Chris, like others I agree it is unforgivable that they can get it wrong. June, I also have sore ribs, have done for a few years now, ie if I lean over a wall and I then stand up, as the pressure of the wall is released it gives me loads of pain. Never thought to mention it, but perhaps I should.
My Hb reading before I went away was 81 (8.1). I know Janet said before I went that she would be booked in for a transfusion the next day if it was her. I dont know why or how, but I feel fine. I have been ok on holiday, and even felt I was one of the more active Mums, playing on the lilo with my children and diving in etc. We also went on a jeep safari which was a full day (0830 - 1930) and then went on to a Turkish Evening. Dont really like the Turkish Evenings but I felt great! I obviously slept til I woke up (so missed breakfast quite a few times), and was on my sunbed a lot, but even so I feel normal. I do plot my readings on a graph and they are definitely on a downwards trend.....my next challenge is to get to Christmas feeling normal.
We have just bought a cross-trainer, its of gym quality so once I have caught up on here I am going to put an exercise programme together. It will only last half an hour, I feel this is the best amount of time to allow me to do it daily because once I go back to work tomorrow my time will be a bit full, what with doing tea etc.
Anyway, love to all.
Take care, good health!
Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Re: myelofibrositis
Hello everybody, Sorry I didnt explain the bloods I asked about how its supposed to read because on this site it come 8.7 but at Bournemouth hospital that reads 87.00
so 107 is 10.7 I dont know why they change
Dr Killick is concerned over the Neutrophil result at 1.7 does anyone know what it does or means?
Keep well & welcome to Sarah
June
so 107 is 10.7 I dont know why they change
Dr Killick is concerned over the Neutrophil result at 1.7 does anyone know what it does or means?
Keep well & welcome to Sarah
June
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Re: myelofibrositis
Hi Jayne
Welcome back. Missed your posts. Yes, am quite hacked off about scan results and just about to ask for a formal explanation!
Glad you had such a great time on holiday and felt so well. There must be all sorts of factors other than the pure haemoglobin count which determine how you feel so I suppose best not to compare with anybody else's numbers but get to know your your own and what that means for you. I thought I was the only crazy who plotted blood test results on a graph so was really glad to know I am not alone in my madness! They do give a much better indication of trends than pages of figures and I was heartened to see relative stability in some of my counts - though not the platelets which are slowly descending... to what I wonder?
I admire the proposed workout with the cross-trainer and I'm sure the fitter your muscles are the less work your body had to do to get through the daily activities. Hope your first day back at work was not too taxing - even making the tea??!!
June
Different places use different measuring systems for blood counts. If the maths is going to give uyou a headache, stop reading now! In US, normal white cell count is quoted as 4,500 - 10,000 as they count cells per millilitre whereas in the UK it is per microlitre so you need to count 3 places to the left of the last figure and stick in a decimal point. So UK range would be 4.5 - 10. With your haemoglobin count thay are using yet another different system so you just put a decimal point in before the last figure!!! Good to know that as otherwise you would be a bit worried if the norm was 116 and yours was 10!!
For what it's worth, my blood test results form states normal neutrophils are in the range 1.7 - 7.5 so if your hospital is using the same system, 1.7 would be within the range of normal. However, if your hospital is using a different one (as it does for the haemoglobin results), then it would be very low. Again, you need to ask to see your printed results (mine usually contain a range of normal in a column next to my results) and ask your consultant what the normal range of neutrophils would be. It is very confusing and no doubt they have their reasons for using different measurement systems. Having low neutrophils could make you prone to infections so you would need to steer clear of anybody with an obvious infection, avoid certain foods, avoid aforementioned fungal spores in the garden, ask somebody else to deal with pet faeces, avoid crowded places, use lots of hand gel etc etc. If you haven't already got this, do ask Sophie for a copy of 100 Questions and Answers about MDS as it has a whole section on neutropenia and what precautions to take.
Hope this helps
Chris
Welcome back. Missed your posts. Yes, am quite hacked off about scan results and just about to ask for a formal explanation!
Glad you had such a great time on holiday and felt so well. There must be all sorts of factors other than the pure haemoglobin count which determine how you feel so I suppose best not to compare with anybody else's numbers but get to know your your own and what that means for you. I thought I was the only crazy who plotted blood test results on a graph so was really glad to know I am not alone in my madness! They do give a much better indication of trends than pages of figures and I was heartened to see relative stability in some of my counts - though not the platelets which are slowly descending... to what I wonder?
I admire the proposed workout with the cross-trainer and I'm sure the fitter your muscles are the less work your body had to do to get through the daily activities. Hope your first day back at work was not too taxing - even making the tea??!!
June
Different places use different measuring systems for blood counts. If the maths is going to give uyou a headache, stop reading now! In US, normal white cell count is quoted as 4,500 - 10,000 as they count cells per millilitre whereas in the UK it is per microlitre so you need to count 3 places to the left of the last figure and stick in a decimal point. So UK range would be 4.5 - 10. With your haemoglobin count thay are using yet another different system so you just put a decimal point in before the last figure!!! Good to know that as otherwise you would be a bit worried if the norm was 116 and yours was 10!!
For what it's worth, my blood test results form states normal neutrophils are in the range 1.7 - 7.5 so if your hospital is using the same system, 1.7 would be within the range of normal. However, if your hospital is using a different one (as it does for the haemoglobin results), then it would be very low. Again, you need to ask to see your printed results (mine usually contain a range of normal in a column next to my results) and ask your consultant what the normal range of neutrophils would be. It is very confusing and no doubt they have their reasons for using different measurement systems. Having low neutrophils could make you prone to infections so you would need to steer clear of anybody with an obvious infection, avoid certain foods, avoid aforementioned fungal spores in the garden, ask somebody else to deal with pet faeces, avoid crowded places, use lots of hand gel etc etc. If you haven't already got this, do ask Sophie for a copy of 100 Questions and Answers about MDS as it has a whole section on neutropenia and what precautions to take.
Hope this helps
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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Re: myelofibrositis
HI ALL
Twice i have typed out post and lost it twice ???
June its the decimal points fault white cells should be 4-11 and Newts as i call them fight infection and should be approx 30 percent plus of the white cell so if white cells 6 newts should be 2 +.....think you should get nurse to explain print out to you ..
Jane glad you had an active holiday i think the issue is your bloods are constant at 8+ i produce very little and they do not live long also i have iron overload ....
Chris i too log the counts and as mine have improved last couple of years i look forward to them ??? i have a problem ... both daughter and son have results ...son due to grades ??? has to do extra foundation year and resit as missed out by 40 points i blame x-box and girls he just did not do enough work....daughter off to college did 13 subjects got A* in some papers and A* in tdr mainly b grades off to college to do psycol-biol-sociol as school do not subjects.....
well must move on but hope to hear from you soon Janet
Twice i have typed out post and lost it twice ???
June its the decimal points fault white cells should be 4-11 and Newts as i call them fight infection and should be approx 30 percent plus of the white cell so if white cells 6 newts should be 2 +.....think you should get nurse to explain print out to you ..
Jane glad you had an active holiday i think the issue is your bloods are constant at 8+ i produce very little and they do not live long also i have iron overload ....
Chris i too log the counts and as mine have improved last couple of years i look forward to them ??? i have a problem ... both daughter and son have results ...son due to grades ??? has to do extra foundation year and resit as missed out by 40 points i blame x-box and girls he just did not do enough work....daughter off to college did 13 subjects got A* in some papers and A* in tdr mainly b grades off to college to do psycol-biol-sociol as school do not subjects.....
well must move on but hope to hear from you soon Janet
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Re: myelofibrositis
Hi June
Don't know if you sre interested in this but there is a conference middle of November in London on MPDs (Myeloproliferative diseases) including a section on Myelofibrosis. It might be interesting for you and you could meet other patients with the same disease - very important I shoud think as yours is so rare? Look on the events section of this website.
Chris
Don't know if you sre interested in this but there is a conference middle of November in London on MPDs (Myeloproliferative diseases) including a section on Myelofibrosis. It might be interesting for you and you could meet other patients with the same disease - very important I shoud think as yours is so rare? Look on the events section of this website.
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.
Re: myelofibrositis
Hi Chris & Jane & everybody, Sorry I hav'nt been in touch for a few weeks however I saw Dr Killick last week & she has decided on Blood tranfusions every 6weeks the next one is tomorrow thank goodness I feel so weak you all know how that feels.
One interesting outcome of my visit was a drugs trial starting in January JK2 was mention'd not a cure but supposed to relieve the symptoms of anemia & shrink the spleen. 3 hospitals in the UK have been offer'd it, I have agreed except I said I wouldnt consider it if there was a placebo involved. She says there wouldnt be
Keep well
June
One interesting outcome of my visit was a drugs trial starting in January JK2 was mention'd not a cure but supposed to relieve the symptoms of anemia & shrink the spleen. 3 hospitals in the UK have been offer'd it, I have agreed except I said I wouldnt consider it if there was a placebo involved. She says there wouldnt be
Keep well
June
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Re: myelofibrositis
Hi June
please tell me more do you know which hospitals what the drug should do ie increase blood production what if any problems it may cause ect and the transfusions yes i do know all about that
thanks Janet
please tell me more do you know which hospitals what the drug should do ie increase blood production what if any problems it may cause ect and the transfusions yes i do know all about that
thanks Janet
Re: myelofibrositis
Hi Janet, I dont know any more than I said in the last post on December 8th Dr Killick will have all the info on it so she says & we are to discuss its pros & cons so I will let you know & I will ask where else its beiing trial'd
Keep well June
Keep well June
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