[bea512]

very scared

by bea512 on Sat Oct 27, 2012 4:01 am

recent blood tests have revealed abnormal levels indicating myeloma. I AM SO AFRAID! I am single, 55, no family, no children, no friends, limited funds. initial consultation with oncologist has me going in for biopsy, mri, blood work... he's said I am in good physical health. like everyone, wishing so badly for a cure! have not slept tonight, searching the web for possible breakthroughs... have stumbled on sites for Dr. Bruzynski, and pharmaceutical companies with new vaccines... praying and hoping for the best.

[itsme]

Re: very scared

by itsme on Sat Oct 27, 2012 5:41 am

I'm so so sorry. I'm new at this so don't have the answers or right words except to say that I may be a stranger but I care.
Do you have a plan set in place yet?

[Snip]

Re: very scared

by Snip on Sat Oct 27, 2012 7:45 pm

Take a deep breath, Bea. There's no sense getting yourself all hyped up here... and you may well be doing the worst possible thing for yourself by jumping on the Internet and searching about this. When I write or speak with others about my experiences with multiple myeloma, practically the first thing I say is to NOT do that ... there is too much info, and a lot of it is harsh, and even just plain wrong.

Take that deep breath yet?

The reality is that for most folks this is a significant pain in the ass disease, no doubt, but more and more of us are learning to deal with it, and to do so for a longer and longer time. Give yourself, and your doctors, a chance to get things sorted, OK? It is very likely, very likely indeed, that its not going to be near as bad as you right now are thinking.

OK ... take another deep breath. Turn off the computer. Find some mindless TV or a novel, and just give yourself a break here.

[LibbyC]

Re: very scared

by LibbyC on Sun Oct 28, 2012 5:41 am

Dear Bea,

I agree with Snip. Try not to look at the computer just yet, it is so easy to find things that are detrimental to a good headspace. The goodnews stories are out there as well but people tend to remember the bad ones. I found I had information overload for the first couple of months after diagnosis, so take one day at a time.

[Nancy Shamanna]

Re: very scared

by Nancy Shamanna on Sun Oct 28, 2012 12:41 pm

Hi Bea, I agree with the others as to not to overwhelm yourself with myeloma related information, from the Internet or elsewhere. One exception I might make about the Internet – and I admit to a bias here – is to read the articles on the Myeloma Beacon. They are very informative. But just don't try to take in too much at once, and take good care of yourself!

[Guitarnut]

Re: very scared

by Guitarnut on Sun Oct 28, 2012 10:57 pm

Hi Bea. I have to agree with Snip, Libby and Nancy. Take a deep breath and stay away from the internet for a bit. There is way too much information out there that is either wrong or outdated. It will just frustrate you until you get a handle on this.

We tend to make things way worse in our minds than what the reality actually is. You will find a wealth of knowledge as well as friendship and support right here. That will be plenty of information to satisfy your inquisitive side for a while until you are over the initial hump. We've all been where you are so we understand what you're feeling.

Hang in there and feel free to reach out!

Scott

[suzierose]

Re: very scared

by suzierose on Fri Nov 02, 2012 6:34 pm

Hello Bea! I hear your fears. I had them also. BUT you did not ask a question. One thing I can tell you is Bruznski is NOT the one to listen to. Once you calm your fears and ask a question there is lots to share. But first you need to collect your thoughts. And yes, I know that is not easy, when you hear the word cancer. Having said that... Myeloma is a rare cancer. it compromises only 1% of all cancers. You need to find a myeloma expert who treats many myeloma patiens since an oncologist may only see 1 patient a YEAR with myeloma. Then you will get the tests that define the specificity of YOUR myeloma and your most important decision will be what therapy do you want to select. IMHO the best therapy to select today, based on the choices available is CRD ..that stands for carfilzomib/revilimid/dexamethasone. And you need to be forceful about the lowest dose of dexamethasone. They recommend 20mg but 4 mg works well. Based on your post you may not even be eligible for drug therapy. So, calm yourself, know that therapy is available, and that you could live 10 years very well with a good QOL even though hearing the word cancer makes you spastic. Been there done that. You have picked a good site, that gives great scientific and clinically valid information and we will be here to support and guide you in the highly personal decisions you are embarking on. You can ask us anything and we will tell you our experiences. We are here for you. Know that. Ask away! Wishing you well and wishing you peace.