[comfortablynumbParticipant]

I have agreed to take part in a study by the Institute of Cancer Research to find out whether there is any family link in LPDS (All blood cancers I think).

I have a questionnaire to fill in and return to my local hospital.

It is interesting, as my mother had Myeloma and I always suspected that might be a factor in my developing the disease. I remember being told when first diagnosed that it was not thought that Myeloma was passed on, so it is good that checks are now being done to confirm whether that really is the case.

Anyone else doing this?

J

[DaiCroParticipant]

Hi John,

I've not heard of the survey but I'd be interested. I was told that MM is not hereditary and I was also told that my history of anaemia was also purely coincidental… I'm due for my eight week check-up next week, I'll enquire about the survey then.

Dai.

[PerkymiteParticipant]

Very interesting, I can trace my family back to 1645, but, I would suspect, that the last 4 generations are the only ones that the cause of death can be really confirmed. Nobody died of cancer as far as I can ascertain, having said that, I am the first [u]male[/u] Marriott to live past 55 for the last 3 generations so perhaps they did not live long enough!

kindest regards

David

[tomParticipant]

Hi John

I was sat today with a chap having our Zometa infusion's and he tells me his Father had Myeloma, but not the same type/grade as his, never thought it was an heridity thing but its strange to be sat next to some one and finding out his Dad had it.

As for the study, well a few months ago I filled a family survey in and done what i can only describe as a Mouth Rinse? What I had to do was put Cold water in my mouth and swil it round for a few seconds then spit it into a small cup? so this study might be the same??

Tom

[KWilsonParticipant]

Yup, I did the test and questionnaire last year – it was a bit of a puzzle trying to get names and offspring of my aunties and uncles but I got there in the end. Wonder if I'll still be here when the results are reported?

xxxxxxxxx

[mandyParticipant]

John
I have a Dad with a related condition which is a blood cancer – Waldenstrom?s macroglobulinaemia – I was diagnosed with Myeloma last summer at the age of 48 but haven't been asked to be involved in any study yet though as a family we suspect there could be.
Mandy

[comfortablynumbParticipant]

Hello Mandy.

I sent you a PM about treatment – hope it helps.

KWilson – I also have problems with missing family. It's a nightmare. I am putting it off, as it is hard to deal with.

My mum took part in clinical trials for the Myeloma. She was getting on in years and I think she knew she had nothing to lose. I like to think she helped me (us), in some way.

[sandie58Participant]

Hi J
My mum has been diagnosed with Myeloma but at present isn't having any treatment, and is actually feeling very well. We go back next week for the results of her bone marrow biopsy and latest blood tests. Depending on the outcome the docs. will decide her treatment. I was told there was no genetic link but I have read several postings on this site which make me think otherwise. I am 58 and because I have lots of various bone pains I got my doctor to do some blood tests before Christmas. When I went for the results she said the report said that the protein levels were a bit of a grey area. I asked her to send the report to my mums haematology clinic as I wanted to know what this meant. She sent the letter before Christmas but when I rang the hospital last week they said they hadn't received it (usual story). The hospital asked the docs to fax another copy!! So, when I go with my mum next week I'm going to ask about my report. I would be interested to know more about any genetic study surveys. If they are doing it it does make you think that there may be a link like a lot of other cancers I guess.
All the best
Sandie

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