[konrad01Participant]

Having been diagnosed with Myeloma a year ago, which is still in the asymptomatic stage, I am still healthy. The current strategy is to ?watch and wait? ? I will review this when I see the consultant in August.

At the age of 68, I think that I should pursue the possibility of intensive treatment.

Would be interested to hear of others' experiences.

John

[MinParticipant]

Hi John
You are so lucky that you asymptomatic, long may it last as the alternative is to start on a regime of medication which is rather debilitating in many ways.
The main thing is you are being monitored and if your situation changes they will step in and start treatment. Just make sure your fit as its possible to be, and the intensive treatment will not be so devastating.
Allow yourself the opportunity to gain a small amount of weight when it starts so that when the bad time come; by that I mean the weeks that you are unable to eat anything, loss of wight will be of no significance.
Meanwhile enjoy the time without any medication as its a roller coaster ride when you do start on it.
Long may you present good health continue. But when you do commence treatment your consultant will tell you what way to go
Min

[jmsmythParticipant]

Hi John

My hubby has been asymptomatic siince September 2006. I just pray he continues that way for many years.
Take care and best wishes

Jean

[mhnevillParticipant]

Hi John

I am also in a "wait and see" stage having been diagnosed last October following the discovery of a tumour on my spine which was removed in LGI and followed by Radiotherepy. I am 66yrs old.

I am very happy to wait and I am in no hurry to begin chemotherepy – although I do take Bonefos. Having read very widely around the subject there doesn't seem to be any advantage to rushing into what, if you intend to have SCT, is a very punishing regime of treatment. For myself, for all sorts of reasons, I can't see me going down that particular route.

My paraprotein level was 9 on the last blood test and, although a little aneamic, there doesn't seem to be any other problems at present. I wonder what your pp count is?

These are all very difficult decisions aren't they. My very best wishes as you traverse this minefield which is Myeloma.

Mavis

[konrad01Participant]

Mavis,

Thanks for this thoughtful contribution. At the last test, my PP was 20. I've been taking iron tablets for most of the last year which is keeping anaemia at bay. Interestingly, the occurrence of anaemia was the first sign that something was amiss after my excellent GP sent me in for a whole range of blood tests.

Coming up for another test in 2 weeks, with next consultant's appointment in the second week of August.

All the best,

John

[konrad01Participant]

Jean,

Thanks for this kind posting. Gives me hope.

All the best to you and your husband.

John

[konrad01Participant]

Min,

Many thanks for this posting.

Much appreciated,

John

[DebsParticipant]

Hi John,

I was in your position when I was diagnosed in July 2009. I gave in to the treatment option in November 2010 but I have to say, I wonder if I gave in too soon. It has been quite hard so if you don't have to do it, don't push for it. They will do it when they think they need to.

I'm currently in hospital having my SCT….hoping to get off the drugs asap!!

Good luck and take care
Debs x

[Gill20Participant]

You can be asymptomatic for years I was asymptomatic for 17 years with fluctuating pp levels and was regually monitored all this time. I did get a lot more infections than most people and some pain but I was OK. Unfortunately after all this time the myeloma has kicked in and I have had to start treatment. But there is hope that you may never need treatment and I think I would hold out until you really need it.

Good luck

Gill

[brochoParticipant]

Hi John I do hope you remain symptom free for a very long time yet The treatment can be demanding , although consultants are generlly very good in working with you to find the right treatment to keep some quality of life balance The other thing in your favoir is the time to research all treatment options Provided you are generally fit and after a multitude of tests they are able to predict ( to a certain extent) how you would cope with a stem cell transplant . I agree with Min if you can keep your weight up it will give you something to keep in reserve if you do start treatment Well I hope this advice is not relevant for a very long time Take care and let us know how you are getting on Bridget

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