myelofibrosis

[chris]

Hi June

Glad to hear that the bone marrow biopsy was not too uncomfortable for you and now you just have to wait for the results!! It's horrible waiting and I did get in a bit of a state about it because everything seems to hang on that test. I'm quite sure that this will yield results so it won't be a case of "finding nothing". It will be good for you to get answers after such a long time but sometimes it's a question of luck in how long it takes to get to the right medical specialist area. When I was first ill with what turned out to be MDS, I was "under" the chest clinic consultant (for my fluid-filled lungs), the Infectious Diseases consultant (for what they thought was an infection contracted whilst in France!) and the haematology consultant for an investigation for leukamia/lympomas; though thankfully, neither of those were found, it was eventually the right department to be in! Even so, my first bone marrow biopsy was pronounced "normal" and the MDS was not discovered until a year later, oddly enough after I went back to the haematology department as my spleen had still not returned to normal. As it's quite a rare illness, it may be that your particular local hospital does not even have MDS on its radar and myelofibrosis is equally rare.

I do sympathise with the enlarged spleen discomfort. It is that constant awareness of something being where it should not be! It presumably affects the amount of space for other organs and I feel my breathing is not as deep as it should be. I also get the most outrageous hiccoughs and left shoulder pain from time to time - I think this is caused by the enlarged spleen pressing on the diaphragm.

Once the results are known, your medical advisers will let know all the options for treatment and maybe then, when you know more clearly the diagnosis, you can start to seek out more information and support. With MDS, and probably with Myelofibrosis if that's what it turns out to be, there are so many different types, sub-types and different levels of severity that it's not really helpful to compare treatments as it is very individual. Please get in touch with Sophie as and when you need more info.

Hope your hip is not too sore today.

How's your garden growing? We are inundated with courgettes and marrows so I spent all day Sunday and half of Monday cooking up marrow and courgette recipes!! Courgette cake anyone??!!

Take care

Chris

[juneadams]

Hi Chris, I had a phone call from Dr Killick with instructions to see her on Thursday this was only 3days after the biopsy she said someone was to come to my home for blood test on Tuesday in readiness So I am presuming she has a result thought it seems very quick the spleen scan isnt until August the 25th.

The Biopsy went fine as you say it must be down to who your doctor is The Angiogram wasnt so pleasent & took most of the day but all that turned out well.

Sorry if you are seeing these letters twice I wrote to Janet but it turns out I had written privately I dont know how that comes about.

Anyway I will be back on Tursday night with some news at last its been 16months now since the symptoms started

Take Care June

[chris]

Hi June

So glad you will have a quick answer. Bet you can't wait until Thursday. Let's hope the time passes quickly. What service! Having somebody take your blood at home?! Are you the Queen or something?!

I have just had a massive setback. I had a spleen scan on 20th July and was told by the consultant verbally at the time that my spleen measured 17.3 cm which was only 0.3 cm bigger than 8 months ago and the consultant agreed that this was not really significant as it can be a matter of how the measurement is taken by different ultrasound technicians. Then, a week later I received a letter from the GP enclosing a typed copy of my results and it said my spleen measured 23 cm! An increase of 6 cm. I had been having a lot of left shoulder pain but was quite staggered to read that -especially as I had had a week of feeling very upbeat and reassured that all was stable. I have queried it at the hospital but the consultant who carried out the scan has now left and they assured me that the measurement has been checked and is correct and no explanation of why I was told something different face-to-face. I have asked the GP to run a full blood count as I am worried that the blood counts must have changed following such a massive spleen increase (if true) and the GP has asked for a repeat scan in view of the apparent confusion.

Make sure you ask for the spleen measurement at your scan!!

If I have another bone marrow biopsy, should I come down to Bournemouth for a painless one?! Though I think I have read on this site that people think it gets worse the more you have?

I hope you have some good news on Thursday. Let us know.

best wishes

Chris

[Jayne]

Chris

It certainly sounds like you are being given confusing information, which just isnt fair when it means so much to us. I think the only way for you to feel sure and happy with your results is to have the spleen measurements re-done and I think you should push for this, and knowing how knowledgeable and thorough you are I am sure you are doing this.

I do hope you get some clarification.

June, as Chris says, hope the news is good on Thursday and please do let us know.

Jayne

[chris]

Hi Jayne

Yes, I thought that a repeat scan was the only way forward and the GP was supportive and happy to do that in the circumstances. If confirmed at 23cm and the blood counts are changed, I will need to check with Addenbrookes what should be happening vis-a-vis any action but I have an appointment at the end of September.

Thanks for replying. How life changes for us with these numbers!!

Chris

[janetstanford]

Hi Chris
Sorry to read your news hope your well and not not worrying too much although i know this will be hard not to do ...but from your posts i have read since i have been a member i know you will go forward ensuring the right treatment ect is given

please take care Janet

[juneadams]

Hi Chris & Janet, Sorry to read about the scan fiasco such a worry for you.

My new today with Dr Killick is pretty dire its Myelofibrosis she says she sees approx 20 Myleodisplasia patientper year but only 2 Myelofibrosis I thought it would be the other way around.

However she was very straight & said from the start there was no cure or treatment because of my age the only treatment would be blood transfusions which start on Monday Chemo is out of the question as it would distroy the bonemarrow but that Chemo tablets may be used later on.. I asked what the end would be because I had always thought of catching something with dysplasia but she say it would be with leukemia taking over, I dont know what this means as I dont know anyone with it everyone tells me it cureable but with Fibrosis it isnt.

I will let you know how Monday goes

Take Care & thanks for your support its been invaluable, I told Dr Killick about Chris telling me about her at Bournemouth Hospital she was most impressed with our chats

June

[Jayne]

Oh June, that really doesnt sound too good and I am sorry to hear that there is no option of a cure for you. It sounds as though you are in good hands with Dr Killick and I am sure after your transfusion on Monday you will feel much better.

Take care,
Continue to chat with us and keep us updated on how you are doing.

Jayne x

[janetstanford]

Hello June
Sorry your news is do sad how you must be feeling ? your 1st blood transfusion is on Monday on the positive side you will not feel so tired and this may help you when thinking about your illness...remember it may or may not end up in AML..
as silly as this may sound there is always HOPE....
I will try and keep this short (not what i am good at )
in May 2008 i passed out found myself in hospital bloods at 4 my bone marrow was producing nothing..after tests i was told i had NHL of the bone marrow both a low grade and a high grade ....i was told without treatment 6 mths and i was just tired >>>>
A few weeks later i started chemo and it really is like the advert where the guy says when you take your 1 st tablets your on a journey !!!!
my marrow has grown back except the blood can not produce much and yes the NHL may come back but i can always hope 3 years later i am thankfully still here.. every moment even the bad times are good and i am glad to deal with them...

Hope is the 1 thing i always carry with me no more so than at that monthly blood test and it has increased at every 1
as upsetting as a diagnosis is June being positive of mind helps and we are hear should you need us even just to moan to sure we can help you there
please take care Janet

[juneadams]

Thanks for all you kind thought its very much appreciated I shall feel on top of the world on Monday or Tuesday.

I do voluntary PR work for Waggy Tails Animal Rescue & will be having a coffee morning on one of the next 3 Sundays with stalls etc so that will be cheering me up.
we hav'nt done this for 8 years the previous 6years before that we raised just over £21,000 for them So this might be my last come back. at least it stops me thinking too much about the little!!!! problem

Everyone Take Care out there

June