[nicholas sutton]

Just been diagnosed

by nicholas sutton on Fri Jan 17, 2014 9:20 am

Hello everyone, and I hope you don't mind someone from England joining you. I was brought into hospital about 5 weeks ago with endocarditis and have been treated with antibiotics. I also need an operation to replace one of my heart valves. Yesterday, I was told that proteins had been found in my blood indicating myeloma and have had bone marrow biopsi. I am now waiting for the results in a state of some anxiety.

I am 60 years old, fit and well up to the illness, and have no problems on the bone x-ray, no aches or pains in the bones and liver and kidneys are normal. I am a bit anemic however. It is pretty tough waiting for the results as I have no idea whether they will say this is really a major and immediate problem or whether they will say treatment can be effective.

I really appreciate this site, it is wonderful. If anyone has any advice for me it would be much appreciated.

[Terrilynnn]

Re: Just been diagnosed

by Terrilynnn on Fri Jan 17, 2014 9:28 am

First step seems to be finding this site. I also just found it and really wish I would have found it at the beginning of this journey. The depth of knowledge and support is unbelievable. I wish you the best as you take this journey.

[Multibilly]

Re: Just been diagnosed

by Multibilly on Fri Jan 17, 2014 10:41 am

Hi Nicholas,

Gee, you write nearly perfect "American"

It's always tough waiting for the results of a significant test like a bone marrow biopsy...your mind can easily drift to worst case scenarios as you wait.

But note that you may simply have an early myeloma precursor condition such as MGUS and that you very well may never develop full-blown myeloma in your lifetime and may never require treatment or feel any worse for having this early stage of the disease. Don't lose sight of this fact as you wait for your biopsy results.

It's also extremely great that you have no bone involvement and that your kidneys are doing well. I'm going to also guess that since you are only a "bit" anemic that your hemaglobin level does not classify you as being "anemic" by multiple myeloma standards (Hemaglobin less than 10 g/dL)

Best of luck on your biopsy results. Let us know how things turn out.

[Kaew]

Re: Just been diagnosed

by Kaew on Fri Jan 17, 2014 3:22 pm

Hi Nicholas,

I was confirmed with myeloma in May 2012, like you they found high protein in my blood test, couple more test and a biopsy confirmed it. Had ASCT on November 2012, now in remission for 10 months.

I would not worry about it too much until you got confirmed. IF they confirm it, I am sure you will go through the treatment and come out just fine because you are healthy in the first place. This will be in your benefit when you have transplants. I was in the same situation like you, healthy, always excercise. Right now I'm on maintenance therapy with Revlimid.

Good luck to you,

Kaew

[nicholas sutton]

Re: Just been diagnosed

by nicholas sutton on Sun Jan 19, 2014 5:30 am

Thank you for these kind words of support. I have been diagnosed with Stage 2 and will begin treatment shortly. First though the small matter of a valve replacement on the heart which should be done tomorrow (Monday) and then recuperation from the op. Trying to readjust my horizons mentally but it is hard at times. One thing I am determined to do is to focus on the good things in my life which are sometimes neglected. Another is to ensure that each day I have is good day doing things that are important and concentrating on those who love me, too often sadly taken for granted.

If the operation goes well (and they seem very confident) then I could be home in a week. I had often thought I needed to change my life to sharpen the focus on the things that properly matter but too often I was hung up on making money. This happening really really makes it essential to make that change. Still no symptoms, which is a blessing.