How do I tell them.....

[Brightsky69]

I need some opinions……

I received the results of my bone marrow biopsy and basically it showed I have signs of myeloma but my doctor thinks I may just have MGUS. I could also have smoldering myeloma.
He has me set to go to UVA medical center to get a “second opinion” Plus I had to complete a 24 hour urine (to look for a protein) and I just did a skeletal full body x-ray.
I wonder what to tell my family….normally I don’t bother them with my medical stuff other than to say I am doing fine.

I was talking to my brother this morning via email. A couple of emails in I told him about what’s going on as far as the myeloma situation. That email I sent to him was about 40 minutes ago and I still haven’t heard back from him. I don’t know if he is in shock or just got busy at work.
How should I go about informing the rest of my family and friends? I don’t want to freak anyone out. I’ve already told my boss and he seemed a little freaked out himself. Should I tell people face to face, call everyone or kill two birds with one stone and post something on Facebook?  )   

[cariad]

Oh, wow, I am sorry to hear this. I had to google MGUS and it seems that this is a 'typically harmless' condition.

I would *not* post on Facebook, but perhaps you were only joking. I'm surprised you've told your boss, are you close?

I think it's OK to tell people via email. I seem to remember that you have some challenging familial relationships. Personally, I would be very direct about the news and what I expect from them: this is what I've been told, there is a chance it will turn out to be nothing and I am focusing on that possibility at the moment and would appreciate same from you. Please do not bombard me with questions, but please don't ignore me or try to avoid the subject. I would appreciate knowing that I have your support at this time.

I would go a different route with friends and my husband as those are the ones that I share my true fears and anxieties with. I would also wait to tell those people in person, and would want to tell them first, so would hold emails to family of origin until that was done.

Good luck. Hope further investigation brings good news.

[Brightsky69]

I did tell my boss because I've always kept him informed concerning dialysis & kidney transplant. He totally understands when I always put in for leave or come in late. Since he knows whats going on he gives me alot of slack. 
I haven't told any of my co-workers except one who use to work in the medical field. And I told my brother this morning.
That is my main thing...I don't want to freak anyone out and get bombarded with "Oh my God, your gonna die!!" type of responses. When I received my 2nd kidney transplant there were some serious issues with my creatinine level plus one rejection episode. When my boyfriends parents herd this I got questions from them "When are they going to put you back on dialysis? Your loseing your kidney, right? Lets us know when they put you back on dialysis."   
Maybe I shouldn't tell anyone about this until I know specifically what "it" is.

[Deanne]

First 

If it was me, I think I'd try to wait until I had some answers before saying anything, except to people you need to support you. It's a personal decision. For me, I'd hate it to have people constantly asking for news when I don't know anything myself. It just annoys me.

[Brightsky69]

Yeah...I am not going to tell anyone till I know for sure what is going on....till it has an offical name.
I did tell my boyfriend and he said "Whatever they say, whatever they tell you...just remember it's going to be alright."

[MooseMom]

I agree with Deanne; it might be best not to say anything until you know more.  As long as you have good support from your bf, and it sounds like you do, then don't open yourself up to relentless questioning by others until you have more answers.

I am sorry you are having to deal with all of this.  I am really hoping that whatever it is will just be a benign condition that will be easily manageable.

[lmunchkin]

First 

If it was me, I think I'd try to wait until I had some answers before saying anything, except to people you need to support you. It's a personal decision. For me, I'd hate it to have people constantly asking for news when I don't know anything myself. It just annoys me.

I agree.  I just recently had a Mammogram, paps, and ultrasound on uterus.  Tests all came back clear except for some spot on rt breast shown on Mammogram.  Did a repeat mammogram and spot ultrasound of the area, and Friday was told spot was not seen.  I never said a word to anyone. Told my husband that all was good!  Just my way of handling things when it comes to myself.  Had I said anything to any family members, they would have pestered me to death with questions.  Plus, the fact that there was actually nothing seen, they would have worried for nothing.

I wouldnt say anything, if it were me.

God Bless,
lmunchkin

[Brightsky69]

Well...my appointment at UVA is Thursday. I have copies of my skeletal survey and CT scan on CD for them to look at. I am not even going to bother to look at them before hand.
Whatever happens...happens.

  all goes well.

[MaryD]

My fingers are crossed!

[lmunchkin]

 
lmunchkin
 

[Brightsky69]

Well..Doc said it's smoldering myeloma. c'est la vie

[MooseMom]

Well..Doc said it's smoldering myeloma. c'est la vie

What exactly does that mean?  What's the treatment plan?  Is it caused by tx meds?  Sorry...so many questions.

   What can we do to help?

[Brightsky69]

Smoldering myeloma is basically a slow growth cancer. From what I understand it’s a plasma cell type cancer.
Basically they are going to keep an eye on me to check that it is not progressing into multiple myeloma. From what I understand it eventually will.  Progression could be years and years from now. Doc said there is a cancer drug I could take that wouldn’t do any damage to my kidney and should be relative easy to tolerate.
He also said that he doesn’t know right now if its transplant drug related or caused by something else.

He mentioned that he has a patient that also has smoldering myeloma and looking at their labs he thought for sure progression would be within 2 to 4 months. That was 7 years ago and there is no need to treat yet. 

[MooseMom]

Smoldering myeloma is basically a slow growth cancer. From what I understand it’s a plasma cell type cancer.
Basically they are going to keep an eye on me to check that it is not progressing into multiple myeloma. From what I understand it eventually will.  Progression could be years and years from now. Doc said there is a cancer drug I could take that wouldn’t do any damage to my kidney and should be relative easy to tolerate.
He also said that he doesn’t know right now if its transplant drug related or caused by something else.

So, do you think you will go ahead and take the drug, or will you just take a wait and see approach?

He mentioned that he has a patient that also has smoldering myeloma and looking at their labs he thought for sure progression would be within 2 to 4 months. That was 7 years ago and there is no need to treat yet.

LOL!  That sounds familiar.  My neph expected me to be on dialysis eight years ago...  The human body still holds many mysteries.

[Brightsky69]

Well, I've read different things concerning early treatment. One said early treatment shows no benefit to effect cancer outcome. But then I read about some research they did in Spain that shows diffrent results. But the doctor being interviews said the research was not enough to change the course of standard treatment because the research study was done on only 60 patients.

I am really learning as I go just like with ESRD. It's strange, if they had told me sorry but you kidney is failing....I would have been in pieces. They would have had to pick me up off the floor. But when they mentioned cancer I was half expecting it. I know all along that these meds we are on can increase cancer risk. So i guess it was alway in the back of my mind. It really didn't come as a big shock. Weird.

[MooseMom]

I am really learning as I go just like with ESRD. It's strange, if they had told me sorry but you kidney is failing....I would have been in pieces. They would have had to pick me up off the floor. But when they mentioned cancer I was half expecting it. I know all along that these meds we are on can increase cancer risk. So i guess it was alway in the back of my mind. It really didn't come as a big shock. Weird.

Oh, I don't think that's weird at all!  I knew nothing about myeloma until I did some research after reading this thread, and while cancer in any form is rarely innocuous, if you are going to play "Let's Compare Maladies", I think it's fair to say that ESRD is much more devastating illness.  And if you've received the miracle of a reprieve via transplantation, the failure of a new kidney would be almost unbearable.  I suspect that anyone with a tx is half expecting cancer somewhere along the way.