[lennyParticipant]

Hi Michael,
Thank you for your kind welcome and thank you for taking the time to speak to me.
Please forgive me for taking this long to respond to you. The truth is my mood sank
for a few weeks and I just couldn’t face speaking about myeloma for a while anyway.
However I’m fine now and that cloud has lifted.
You mentioned treatment for high risk sgmouldering which I am, I’m presuming this is trials if so I would like to know more. And if this is available here in u.k. When I asked my consultant about treatment he advised it would not benefit me at this time as the treatment was aggressive and would affect my quality of life. My latest blood test showed my kappa had increase slightly from 5.49 to 6.73mg/L. lambda 1246.2mg/L serum paraprotein 9.32g/L. I’M somewhat confused with these results as I just don’t know if there good or not as it looks as though my lambda and paraprotein have decreased.
You see Michael I am still very confused about myeloma. I haven’t had an MRI but I have had full body x-ray and CT scan which showed small lesion in top of my left arm.
I’m very happy for you it would appear the stem cell treatment worked for you and this also gives me hope I also hope your recovery continues and you remain in good health. Thank you again and please forgive my ignorance. Linda.

[lennyParticipant]

Thank you Julie

for taking the time to respond to me.

I hope your husband responds well to the treatment and makes a good recovery.

You are right about getting on with life I am still working full time and carrying on the way I always have. Myself and my husband are also going on holiday in June with some of our family.

When I read about other people and there experiences with this disease I feel nothing but respect and admiration as you are all so strong and positive whereas I have been so negative at times.

I have accepted that I have this disease and I will do my best to prevent it from becoming active but I must also be prepared for the worse reality is my lambda light chain is extremely high 1866 and PP 12.

Good luck to you and your husband and please keep me informed as to his progress I really hope it all goes well for him. Linda.

[lennyParticipant]

Thank you Gala for your kind response.

You are right mine is smouldering myeloma and apparently stage 2 as my consultant informed me there are three stages to myeloma.  I know I am luckier than most people as I don’t experience symptoms right now but my consultant thinks myeloma will become active in a couple of years approximately.  I have been spending a lot of time recently trying to understand this disease but the more informed I become the greater the fear becomes as I try to come to terms with what is to come. You see I don’t know which is worse active myeloma or this waiting. Thank you again for taking the time to respond to me. Linda

[lennyParticipant]

Hi,

My name is Linda and I have recently been diagnosed with myeloma.

I had never heard of this before.

Like pin45 I am so confused about everything and to be honest don’t understand any of it.

My family are also confused and constantly asking me why I am not receiving treatment.

I was not given any literature by my GP or my consultant until last Weds at my 3rd consultants appointment when I asked why I couldn’t have treatment to prevent the myeloma becoming active. My consultant then gave me some info regarding the three stages of myeloma informing me Ideas stage 2. He also said the treatment would make me very sick and told me to make the most of my life while I was still fit and healthy.

I have also now taken your advice Peter and sent for an information pack.

Thank you both sorry for rabbiting on.

So confused and still in shock ?

Linda.

 

 

[Author]

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