bone marrow

[juneadams]

June again, Janet & Jayne, how was you MDS diagnosed did they take some bone marrow to sort out which type you have? & does it hurt?

[janetstanford]

Hi june

i had a bi-op to find out what i had as they did all the other tests first and nothing showed scans (everything) so this was the only thing left

i had 4 in total the other 3 at the end of each month after a course of treatment ...i have to say i was chicken and i had drugs for all 4 i could not face it without ... i also had the other half with me to hold my hand could not have done it without him ...because i had the drugs all i felt was pressure like a tugging / pushing and i found it a little difficult keeping still ...it only took a few minuets and after about an hour the drugs wear off....and for a couple of days after you have a mild ache in that area after each i sat with cushion at the base of spine and also i sat on one for comfort

hope that helps hope i have not put you off as at first i told the doctor no and i am so now because i can be rather blunt at times when scared but it had to be done
any more questions please ask
janet

[juneadams]

Hi Janet, Thanks so much for that its a great help, On Wednesday I see the doctor at Christchurch Hospital & am taking a A4 piece of paper full of questions.. well you have to try & think of everything as its so difficult to get appointments..... My thoughts on this will be going in & him telling me its a miss diagnosis

I am finding I am loosing my words in a conversation forgetting words Or is this just old age these symptoms are so similar

Still showers here but a lot warmer

June

[ceejay]

Hi June my name is Joan & my husband was diagnosed with MDS 3 years ago. He has had lots of treatment including a bone marrow transplant. If you think I may be able to help you with any questions please feel free to ask. I think a site which will help you is www.beatbloodcancers.org/patient-information then select MDS from drop down box it covers all aspects of MDS.You can also download booklets or they will post them to you. perhaps after reading it you will have a better idea of the questions you want answering when you see your doctor. As regards the bone marrow biopsy I don,t think they do one on people over a certain age so try not to worry about it and remember there is always someone on this site who is willing to listen. Keep strong .
Regards Joan

[juneadams]

Thank you for the info Joan, Can I ask how old your husband is? Everyone I have spoken to so far have been so young which of course makes this MDS all the worse.
I know that at 72 nothing can be done but knowledge of MDS is useful. I did visit the website & found it very informative though I thnk mine started from taking bendroflorazide? 30 years ago (cannot remember how you spell that) I notice now that the doctors dont advise taking it long term

June

[ceejay]

Hi June, my husband ,Colin, is 59 but I can let u know that there are people at our clinic who are older, one gentleman is in his late 70's and he has actually built his own pedal cycle and done a sponsored ride for charity so there is always hope if we think positive. Take care
Joan.

[janetstanford]

hi June

good advice from ceejay i may also look at that site what is worrying though is have they graded mds as a blood cancer i know there has been debate ??? and i did not know that at a certain age they do not do bi-ops

i would not worry about the age of us all ..as i thought only older people got it and 3 years ago i was 49 when diagnosed and i felt odd ....but like all other illnesses they do not consider age .....

and you mention memory yes we all forget at times and yes it also happens with age ...but i have an issue when bloods are low as they go down down i get clumsy forget concentration goes out of the window ...a real issue the week before a transfusion i rarely leave the house and certainly not alone.....
i also forget to ask questions when i see the doctor as this normally day before transfusion....but this time will be different as i had bloods Friday and i am clinic this week ...tomorrow i am going to sit down and type a list .....

hope your appointment goes well and it is not as bad as you think it may be
hear from you soon janet

[Jayne]

Hi June. My mds was diagnosed my neurologist carried out a blood test because I had a reaction to some tablets they gave me for trigeminal neuralgia. (I was diagnosed with this at the end of Jan, it usually affects the over 60's). The blood test was a concern so I saw a haematologist, a few blood tests later they decided to do a bone marrow biopsy because I was told this is the only way to confirm the diagnosis. It killed!!!! I had to lay really still, but I felt like I was on the ceiling, it really did hurt me. The doctors have said for future ones they will sedate me, so I suggest you TELL them you want to be sedated if they are going to do one. Dont take no for an answer, .

I believe there is a limit on the age stem cell transplants will be given, I think it also depends on each individual and there case, as it seems mds varies for widely.

Jayne

[juneadams]

My thanks to everyone for all the info. You certainly had a bad time Jayne.

I have filled an A4 piece of paper with questions. I will get back to you all on Wednesday night... I know I am too old for any treatment so I may also be too old for the Biopsy (that could be a god send

June

[chris]

Hi June

I don't think 72 is old and it certainly should not stop doctors giving you the options of different treatments. Agreed, a stem cell transplant might not be recommended as you have heart problems already but there are other treatments which might help you deal with the MDS better. Dr Sally Killick at Bournemouth is one of the UK's MDS experts so you could always ask for a referral there if you don't think you are getting the best treatment elsewhere - though is Christchurch hospital an off-shoot of Bournemouth?

Hope your appointment is helpful and you get the information you need

Best wishes

Chris