myelofibrosis

[janetstanford]

Hello June

yes keep active and positive and a good cause will take your mind off your "little problem " focus on the good and your last stand ....No i think and hope not .
Waggy tails you could put a post in the Say hell and general messages section for any members who live in your area they may come along and help raise badly needed cash and you may meet some of the forum members this may help you stay positive

let us know how much cash you raise and sure you will enjoy yourself... Janet

[chris]

Hi June

I am also very sorry to hear your news. You must have very mixed feelings? Finally having an answer... but not really one you would have wanted to hear. I do understand how that feels. I also hope you can find some support now that you have your MF diagnosis as we all know it is very isolating to have something so rare.

I expect you have already found the website below as it does seem very informative and it may be that you can find out more about possible treatments available and clinical trials as there seem to be some ongoing at present? Also, it may be a source of support from others who have the same disease?

http://www.mpdvoice.org.uk/

I wondered if all your results were back in time for your consultation with Dr Killick -particularly the genetic tests? I just read on this site that apparently 50% of people with myelofibrosis have the JAK2 gene mutation. I just wondered if you had been told whether that is the case with you? There are some drugs being trialled which are JAK2 inhibitors and seem to have some good results regarding reduced need for transfusions and reduction of spleen size- both of which I'm sure would probably be greatly welcomed by you! Dr Killick would be aware of what trials there are but there are links from the above site to what different trials are currently recruiting and, if it's something you would consider, you could maybe raise it with her at your next appointment?

Meanwhile, hope your blood transfusion tomorrow sees you with some more energy to tackle your fund-raising target! Good to have a challenge in difficult times.

Take care.

Chris

[janetstanford]

HI Chris
Good advice for June i am sure this will help answer questions and find a way forward i do agree with clinic trials even if just to help future generations..and tell just how do you find out all this information you must be a google expert..

and June do tell us how your transfusion went and how you feel ..my next 1 is Friday and i know i need it symptoms are back again ...

Please all take care Janet

[chris]

Hi Janet, June and others reading this thread.

Here's a link if anybody is interested in finding out what clinical trials are currently recruiting. Just type in "myelodysplastic syndrome" in the search box and you can see what is happening and where. I think it's gone a bit quiet on the MDS drug trial front at the moment but there is interesting research being done into the cytogenetic aspects of CMML. I have read it but it is like parsel-tongue (snake language -for the Harry Potter fans among us!!) but it's great that more and more research is being done so that targeted treatment might eventually be a possibility.

http://www.clinicaltrials.gov/ct2/search

Hope you are feeling more perky, June.

best wishes

Chris

[janetstanford]

Interesting

[juneadams]

Hi everyone 10days since the blood transfusion & the symptoms are back
a blood test tomorrow will tell me if this is so.

Chris thanks for the info I will look into it

Lv June

[janetstanford]

Hello June
sorry to hear that ....think i left you a post about your hb on another subject hope you found it ...please let us know your results later
Janet

[chris]

Hi June, Janet

Just to let you have the good news that the repeat ultrasound revealed that my spleen now measures 19.5 cm so I am convinced that the 23cm reading was an error because in this disease without treatment I don't think my spleen would have reduced 3.5 cm in a month!! So am feeling a lot better about that but also very angry thinking about what clinical decisions might have been taken on the strength of the 23cm reading if I had not queried it. It doesn't give me much confidence to be honest.

Have you had the results of your scan, June? I hope it wasn't bad news. Let us know and also your recent blood tests.

Best wishes

Chris

[janetstanford]

Hello Chris
Good news you will be pleased and relieved ,you are quite right what issues a mistake like that can cause and it is good that you help manage your own illness and know enough to think twice and question if you are concerned ....i am pleased for you

sorry not posted had a busy week or so ill mother daughters exam results ect


HELLO JUNE need to hear from you think chris and i are concerned we need peace of mind hope you are well

well must get on will be back soon Janet

[juneadams]

Hello Chris & Janet So glad your spleen measurment has been sorted What a worry mistakes like that we dont need..

My spleen was measured yesterday during the Ultra Sound its 25% bigger than it should be I asked the size it should be & she said it varies (very helpful) but usually its 17cm so I reckon that it means mins is 21cm am I right?

As we know an Ultra Sound is painless BUT for the past year I have had painful ribs
& the pain from the ultra sound on & around the ribs was dreadful I would rather have the hip & knee relaced again than go through the ultra sound again thats how bad it was. Paracetamol every 4hrs & no sleep last night was the result of the scan.
Maybe I shall find out eventually if its all part of the Myelofibrosis Though Dr Killick couldnt explain the rib pain.

Red blood count a week ago was still holding up at 107 though I am still feeling the symptoms again it was the first 10 days after the transfusion that everything was fine it seems to be going down at about 4-5 a week

The garden opening for Waggy Tails Rescue took £500,14p it stopped raining just as we opened at 11am & stayed dry till we closed at 2pm mind you when I saw the rain at 10.30 I did say to him upstairs I had enough to cope with without the downpore as well then it stopped (magic)

Lv June