[PerkymiteParticipant]

Hi Clara,

Your Dad has clearly the right mental attitude to tackle this disease, ?Damm the Torpedoes?, is dead right. I wish him and you the very best of luck. He will know when he cannot go to work but until then I would give him every encouragement to try.

I look forward to further posts on his progress.

Kindest regards

David

[PerkymiteParticipant]

Hi Only Me or should we address you as Only You:-),

The general medical consensus at the moment I understand is that there is no hereditary link. My Consultant said no link when asked.

Although having said that there has been at least two, I think, cases on this web site of father/mother and offspring getting the decease so I suspect the Jury is still out on it until some clever soul does a study.

Both my Brothers died of Cancer but not MM, however I am the first male of my line to get past 55 for 3 generations so whether they would have got MM later in life we will never know!

Kindest regards
David

[PerkymiteParticipant]

Hi Ladies, You know my wife has always taken off her bra every night for as far as I can remember! In the good old days it used ……….. are well too much information here I think.

Keep the liberation movement alive is what I say

Kindest regards
David

[PerkymiteParticipant]

Hi Henry,
Welcome (?) to our little band!

No doubt you will but my advice is NOT to bother searching the internet for a magic bullet. I have read all the blogs about Cucumber, Cumin, Red Wine standing on your head whilst singing the Red Flag 😀 etc.. etc.. IF there was a magic bullet we would all have found it years ago ? sorry to be frank but there is not one. You will find all the information you could ever want right here and it is up-to-date. Ask for the free information packs and take a real good look around this site.

There are plenty of youngsters here(I am 68) and you will be able to compare notes and get lots of support. In fact I have been shocked recently by the number of younger people getting the disease. This used to be an OAP decease average age 70 I think. A lot of the statistics are still based on their prognosis. Mine for instance was 2 to 3 years (diagnosed Jul 2009) which is not the case for younger people whom I believe can be up to 15 years and I know of people who have already passed the 16 year point.

Bupa or NHS I do not think it makes a lot of difference, you get tea and biscuits with your consultation and I have to buy my own 🙂 but I think you will find we all go down basically the same path, which depends on your age, type of MM, your clinical condition (ability to take "the medicine") and general level of health. Which is shown here in this old Map of medicine, read auto and allo as the same thing.

http://eng.mapofmedicine.com/evidence/map/myeloma2.html

I look forward to hearing more from you
Kindest regards
David

[PerkymiteParticipant]

Hi Ruth,
Welcome (?) to our little band! The advice about NOT searching the internet for answers is very good advice. IF there was a magic bullet out there loads of sufferers would have found it years ago ? sorry to be frank but there is not one. There are only two sites you need to visit one is the MacMillan site and the other is this one. You will find all the information you could ever want right here and it is up-to-date. Ask for the free information packs and take a real good look around the site.

I shocked by your Ex?s age 29, at 68 I am one of the older generation mentioned by Debs,and no I did not take offence Debs, and she is right this used to be an old persons decease. The average age, back in the good old days, was 70 for a Myeloma sufferer. Now it is getting younger and younger but the life expectancy figures still, in most cases, reflect the older person. I know off several people who have passed 16 years and are still going strong so take heart your Ex has not hit the buffers yet.

Your personal situation is very difficult but I do hope you can get alongside your Ex and his new Girlfriend.
Kindest regards
David

[PerkymiteParticipant]

Hi Min, I think the reply you will get will reflect the individual nature of this decease and of course the individual nature of human beings. We are all basically the same but, apart from twins, do you ever see two people alike – rarely.
I am lucky you might say I have a Consultant who I have total confidence in. I do not try to tell him with what or how he should treat me, I totally rely on his judgement. I just feel he is on my side.

We all follow the same course which is governed by NHS guide lines. You might find this interesting

http://eng.mapofmedicine.com/evidence/map/myeloma2.html

Bear in mind that I think it needs updating, it does not talk of Auto SCT only Allo and it is not an [u]Authority[/u] on how wo treat Myeloma only a [u]guide[/u].

Kindest regards
David

[PerkymiteParticipant]

Hi Jon,

The South African branch of my family gave me a good South African saying to use when things get a little tough. [i][b]Vasbyte[/b][/i] it means bite hard. I use it all the time now it has so much meaning in it if you think about it.

Kindest regards, vasbyte
David

[PerkymiteParticipant]

Hi Jon, welcome (?) to the group.

I like you need it out in the open. I hate the whispered words said in a corner that you can just catch out of the corner of your eye. My wife and I have discussed my Myeloma down to where I want to die! Not that I intend to die for a few more years you understand. To support this openness I send a Medical Update email to all my friends when there is anything relevant to report – such as details of a major appointment with the Consultant. I find that a great ice breaker, I started with 10 emails and the list has grown to 28, all have asked to receive it. When I meet friends now there is always an open discussion about my condition and treatment ? nobody is afraid of embarrassing or upsetting me by asking awkward questions because there aren?t any!

You will find this group very supportive and quite knowledgeable and if they do not know the answer there is always the MyelomaUK Nurse who is ready to help every day. Can I suggest if you have not already done so you have a good look around the site; there is a great deal of information here.

The very best of luck to you with your treatment
Kindest regards
David

[PerkymiteParticipant]

Hi Shirls, I was allowed to "mix with the human race" to use my Consultants words after the 6 weeks period. However I had, and still have for that matter, the same restrictions as yourself; avoid crowded places, people who have colds etc… . It has almost become habit now that I look around for people sniffing or coughing at the supermarket and avoid following them!

Kindest regards

David

[PerkymiteParticipant]

Hi Annie, Welcome(?) to our little group.

I cannot help you specifically but thought I would just say hallo. You will find the forum very helpful and there are some great people on it. Look forward to your postings.

Kindest regards
David

[PerkymiteParticipant]

Hi Dave, Welcome(?) to the forum.

If you want to keep in touch you will always be able to reach me on this site, I am a permanent fixture. I have to keep a check on the site to ensure the girls all behave themselves, they can get so unruly sometimes 😀 .

I was diagnosed on the 11th July 2009, collapsed 4th vertebrae in my neck ? pp level 39, aged 66, prognosis 2/3 years. Finally got enough Stem Cells in October 2010 and had my transplant early December 2010. I left hospital on 15 December, home in time for Christmas. I wrote a ?Musings from Ward 9? it is on page 3 ?Treatments? or somewhere around there. If you have not read it you might find it useful.

All the very best of luck with your Transplant, you will find it is mostly waiting for things to happen. I found my laptop computer so useful.

Kindest regards
David

[PerkymiteParticipant]

Thanks Girls for your encouragement.

I would be on Cloud Nine if my PP had gone to zero Bridget but only on cloud 8 for pps at 2.2. I set high standards for my body to achieve.>:-)

Kindest regards

David

[PerkymiteParticipant]

Thanks for the heads up Bridget on whether the pill boxes are suitable for Revlimid etc… I will check that with the Pharmacist if/when I get to that stage.

Thanks also for the offer of the Publisher chart Gill, however I am just no good with charts and tick boxes. I take the pill forget to tick the box then cannot remember whether I took the pill and get into a right mess. Setting them out in the pill wallet on a Monday is the simplest for me. Yes, the Forum does not accept Publisher files I have tried it before.

Eve, 45 pills A DAY, PLUS pills from your doc, that is awesome, the maximum I am on at present is weekends when I take 9 a day, 4 from the hospital and 5 from my Doc

Kindest regards

David

[PerkymiteParticipant]

Hi Eve, I assume you are referring to a chart to ensure you take your pills in the correct order and time. I use a Pill wallet I purchased in Boots, it only does one week but I find that is ok. Every Monday I pop all my pills into their little slots for use that week. I find it a great help, I have a terrible memory and sometimes I did not know whether I had taken a pill or not. With this system you just check your wallet to find out what ones you have taken.

Hope this helps
Kindest regards
David

[PerkymiteParticipant]

Hi Andrew, welcome to our little group 🙂 Are you a carer or a sufferer?

kindest regards

David

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