New member with questions about test.

Hi I'm new here, well I may have posted last year one time, but now I'm back. I have had MGUS for several years now and get checked every 6 months. My levels went up some last time, but the doctor I was seeing seemed more concerned that I had MS than about the MGUS. I know I have an elevated IGg protein. My father died from MM years ago.

Now I have osteoporosis really bad and had a compresstion fx in 2006, and we thought I had one in April and I didn't get it fixed until last week and it turned out to be 2 fractures and a crack so I had the vertebroplasty done again where they put in the bone cement. During the test one doctor decided to do a bone scan and some thing showed up in my sacrum  and left sacroiliac joint, which lead to x-rays and the an MRI last Monday. And now I'm having a BMB July 10 th. I'm not due to see the doctor until August, but due to the finding on these test there going right for the BMB. Plus that physician left the practice and I'm seeing a new doctor and he seems to be right on top of things. I don't show any  lessions in my spine so far but there was one area that was sort of suspicious for some thing other than a fracture. I'm nervous about the bmb because you don't get any meds to make you not aware, just the local.   

The bone scan said it looked like a metastatic lesion but I don't think that is correct. The x-ray said it looked like a blastic metastatic lesion. The Mri doesn't say anything about any lesions at all. So I don't really know what to think. I thought they would just have me come in for my blood work to see if my levels had changed but their going right for the bmb. The nurse did say it could be going from MGUS into MM or some thing else going on.

Just wanted some opinions and maybe comfort too. I'm sorry this is so long. Believe me I'm not paniced or even that worried. I've been through a lot worse situation in my life because my youngest son was killed in Iraq and there isn't anything that can compare to that, so I will deal with what comes my way.

Thanks for listening.

Lynn 

 

Oh Lynn, I am so sorry about your son and your health predicament. Your son I am sure was a wonderful person and gave his life for his country.  You are right, nothing is as bad a losing a child ever.  But having health issues is right up there with total frustration especially when all u want is answers.  I have had two BMB both with drugs and a local and I never fell asleep, no pain at all, just visited with nurse who was monitoring me. There really is not much to it and nothing can be felt afterwards, I went to lunch afterwards as because I had drugs I could not go back to work. Then I went home and did housework!  I hope the BMB is easy for you and I hope you get the answers you need and if you have more questions pose them to us again.. We will be here for you! Gayle

Thank you Gayle for such comforting words about Chris. My doctor won't give anything other than the local for the bmb. When I had my fractures fixed last week I didn't get to sleep through one second of that and they gave me a little some thing to relax me and the locals and it was pretty rough. When I had the one fixed in 2006 I slept through most of that one.

I guess I'll just have to suck it up and deal with it like everyone else does.

Thanks for your response.

 

Hugs

Lynn

 

Lynn, The BMB is not that bad but each of us is different.. Please keep in touch...Let me know how it goes..

Dear Lynn,

I am so sorry for the blows that life has dealt you. I have lost a mother, father, and two sisters...but I can't even fathom losing a child. God bless you my dear. I am at the MGUS stage also and will be facing a BMB one of these days...but I am relieved by the posters here that have said it's not all that bad.  I am glad your doctors are being proactive! Keep posting...we are all blessed to have this wonderful site to turn to.

Hugs,

Amy

From Anna,

Hi Lynn, Welcome to the group.  Can't answer your question.  Its my Dad that has MM not me.  I come here for support and info for him.  So sorry for the loss of your son.

Your friend,

Anna

Hello Lynne~~ I feel so sorry for you and the loss of your son -- as you say, nothing can possibly compare.  With regard to the BMB, I've had 6 of them over the past 6 years -- the first one was 'cold turkey' with just a local anesthetic and it wasn't pleasant, but once I told my oncologist he said that I would never have to have it done that way again and now ALL patients needing BMB's are given a light medazalan which just knocks you out for 10 minutes with no after effects!! Simple and you just get up, have a cup of tea and a sandwich, and home you go.  I've gone on to movies, shopping, etc as there have been NO after effects.  Since you are the patient, YOU should be able to tell your doctor what you want and he should do it!  After all, you are paying him to provide a service.  I know this sounds a bit tough, but the bottom line is that we all have to become proactive about how we are treated, and there are plenty of doctors who will work with you and will treat you as a knowledgeable human being.  When my doctor said that I had reached the end of the treatments that he knew about for me, I told him about what I had read about Revlimid on the net and he contacted Celegene and negotiated with them for me to be given it -- on compassionate grounds no less -- and I've been on it for over 3 years with excellent results.  He never treats me as though I'm an idiot, discusses all my options with me and will give me valid reasons for whatever he is suggesting for me.  I believe this is what we all need given that MGUS and MM are long term illnesses!!  So if you want a light numbing or a heavier anesthetic you should be able to have it -- without any arguements!  A BMB is not necessarily pleasant, but it doesn't have to be painful.  Its the same with regard to myeloma pain -- there is no reason why we must suffer when there are plenty of medications that can be given which will enable us to have a decent quality of life, a life without pain!!  Sorry Lyn, I'm getting a bit het up because I hate to think that people feel that they must suffer with this disease -- its just not necessary in this day and age.  Good luck with your BMB -- do talk with your doctor and express your concerns -- take an advocate with you if you think that this will help -- and let him know exactly how you would like him to handle it.  Hopefully the news will give you a much clearer understanding of just what is currently happening and whether or not you have progressed to MM.  There is plenty of hope out here as I'm sure that you have seen on this site, what with all the 'novel' drugs as well as the transplants that are being done everyday now.  My thoughts and prayers are with you on the 10th.  I'm glad that you are not worried, for being worried won't change anything and the situation is not an emergency.  Learn as much as you can about MM before making any decisions about further treatment -- you do have time - and then get on with it.  We'll all be here to support you!!  Cheers, Cath in Australia

Thank you all for your comments about  my son. That has been without a boubt the most unbearable thing I have ever had to face in my life.

I am a very strong advocate about my health as I was with my parents when they were sick. My father died from MM and I went to bat to find him the right physicians and the best care possible. Same thing when my mom was ill. So when I found out I had Multiple Scloresis it took me 4 nuerologists and several years to get to the right doctor and he's great.

Now with this going on I am the one who was out finding different doctors for myself just because my MRI was negative and I knew my back was fractured so I didn't stop until I found the right one who re-read the MRI and found the fracture. The one doctor later was the one who wanted the bone scan that showed whatever is going on in my sacrum and sl joint.

Now I haven't met this new hematologist yet as my doctor was in the same group and left the practice so I chose to see this man because I heard good things about him. I dont know his history with MM yet so that will be a question I will ask if it turns out that's what I now have.

I questioned his nurse who is wonderful, we have talked a lot through me faxing her all these test results. She says none of the doctors there give anything other than a local for the bmb and people do ok. So it's not even an option for me there to be given anything to go with it. I don't want to change doctors at this point so I guess I will have to let this one go.

I also didn't win at the hospital last week when I went to have my vertebroplasty done, I told them I slept through the last one but they said they don't do it that way and I never got enough medicine to help. And the local was not too easy either. But I made it through. Now that I probably have another fracture I will be going back to the other facility to have this one fixed.

I just want to know if I have MM now or what is showing on these test. I'm just trying to be patient and see what they say, if it's not MM than I don't know what it is.

Thanks again to all your response and best of luck to you with your health issues. I'll keep in touch.

 Has anyone ever just gone for the biopsy due to test finding or pain instead of just having the labs change??

Hugs

Lynn

 

 

Yes Lynne~~ I had all of my BMB's as a result of increased pain, never just because of changes in my blood readings.  In fact, from what I've read over the years, most people seem to have them done to confirm a diagnosis when they first went to the doctor with unexplained pain.  Then, after blood tests, 24 hour urinalysis, and full skeletal survey's the last test that is usually done is the BMB!  Then, with the results of all of these tests, the doctor can say with certainty that you actuallty have Multiple Myeloma.  When you finally have the BMB you wil know for sure if you actually have MM.  It is interesting that your dad actually died of MM, given that we are told that it is not genetic and that the odds of both of you having it would be unreal!!  Still, strange things do happen.  Good luck with the BMB -- at least you will have an instant answer.  Best wishes, Cath

Cathy that was another thing. The radiologist compared my new x-ray and bone scan to the skeletal survery I had done last August 29 and it stated nothing had show on the skeletal films and now some there is there.

 I had been told this wasn't a disease the is usually hereditary  so I never felt that strongly that I would get MM but like you said you never no. And they also say MS doesn't run in family's either but boy is that wrong.

I haven't had the 24 hour urinaylsis for a couple of years so that may be coming up too.

Thanks again Cathy

Hugs

Lynn