95% Sure

The Dr. told us that they are 95% sure that my mom has Myeloma.  We go Wednesday to see what the additional blood work and urine analyisis says. I want to know what kind of questions should I ask?  I have done a little reading on this site and about what Myeloma is in general.  any advice? 

Good Evening TXmom;

First question I'd ask is what stage am I in?

Next, I'd want to know if I had Chromosome 13 deletion.

I'd also ask for a copy of all my blood work, everytime I go to the Drs., and compare them with what I have eaten and see how the diet can affect the numbers.

If in good health and fairly young I'd ask to be placed on an aggressive Tx. plan. Velcade and Revlamid together tend to counteract each others side affects.

I'd ask the Dr. to fill out the paper work for a Handicapped License Plate or a Placard to hang from the mirror. Apply early as it may take up to 30 days to receive it.

I would NOT waste my breath asking the Dr. how long I have to live! (S)He doesn't know and probably won't answer you honestly anyway. If you truely want that answer, you'll find it in your research on the internet. But keep in mind all those stats are old news anyway! Focus on the positive! Don't take your eye off of the target.

These are the first ones to enter my head. I'm sure other posters will add to this list. You are correct, this is a wonderful site to find the info that you need to fight this horrific disease.

Good luck and welcome;

Kevin

Kevin,

Thanks for replying.  My mom is 62 and she was in good health but recently she has lost so much weight and is tired alot.  She intially was admitted into the hosptial (after months of being ill, she is too hardheaded to go to the dr.) she was severly anemic and had to have four pints of blood.  She was complaining of pain in her gallbladder area but that has went away.  She had trouble eating everything made her sick and tasted funny, but that too has gotten better. She still keeps going though. 

I was under the impression that they wouldn't give us a the stage yet until they did the bone marrow biopsy is that correct? They will do that Friday if the test are back from her blood and urine.  Why did they take a 24 hour urine sample does that have to do anything with her kidneys to see if they are functioning properly? 

 Can you tell me a little about the Chromosome 13 deletion?

I feel so out of my league here. I guess in time I will become more educated about this disease.

Thanks.

 

On 2/12/2008 TXmom wrote:

Kevin,

Thanks for replying.  My mom is 62 and she was in good health but recently she has lost so much weight and is tired alot.  She intially was admitted into the hosptial (after months of being ill, she is too hardheaded to go to the dr.) she was severly anemic and had to have four pints of blood.  She was complaining of pain in her gallbladder area but that has went away.  She had trouble eating everything made her sick and tasted funny, but that too has gotten better. She still keeps going though. 

I was under the impression that they wouldn't give us a the stage yet until they did the bone marrow biopsy is that correct? They will do that Friday if the test are back from her blood and urine.  Why did they take a 24 hour urine sample does that have to do anything with her kidneys to see if they are functioning properly? 

 Can you tell me a little about the Chromosome 13 deletion?

I feel so out of my league here. I guess in time I will become more educated about this disease.

Thanks.

Good Evening TXmom;

"she is too hardheaded to go to the dr."

We prefer to be called "set in our ways" or "old school". You'll understand better when you reach the other side of 50!

"I was under the impression that they wouldn't give us  the stage yet until they did the bone marrow biopsy, is that correct?"

You may be. I had my BMB 3 days after being admitted, so perhaps they will need that to determine the stage. None the less, find out what stage she's in.

"Why did they take a 24 hour urine sample?"

Protein levels can be determined by taking urine or blood samples.

"Does that have to do anything with her kidneys to see if they are functioning properly?" 

Possibly. If she was on an I.V. drip they would monitor her fluid intake and also the output to see if they were functioning properly. Was she having problems with her kidneys?

"Can you tell me a little about the Chromosome 13 deletion?"

The little I know is that missing chromo-13 does not make you susceptable to MM, however, having MM and 13 deletion is not good. The stats you'll read about usually can be halved for chromo-13. But, keep in mind, this disease is very unique to each individual.

"I guess in time I will become more educated about this disease."

I would suggest you do some homework and take the fast track on your education. You will meet Drs. who will either talk to you or talk down to you! The difference, in my opinion, is how well you comprehend what they say and how you respond back.

Take care;

Kevin

 

Hi TXMom~~ All of the advice that Kevin has given you is ditto for me -- he's spot on the mark!  I'm just wondering why the doctors feel that your mom has myeloma?  I mean, she was tired and anemic and needed blood transfusions, but wasn't she in some kind of pain??  It seems very strange to me that, without a bone marrow biopsy and skeletal survey's, they should have come to this conclusion. Did they give you any reason for this conclusion?  Most people seem to have bone pain of some type - a backache, trouble when walking, whatever.  It just seems so odd to me that tiredness and needing a transfusion equate to myeloma.  I do hope that they will soon have a definitive answer for you.  But you are doing the right thing by using this site and educating yourself to be able to ask the right questions when the time comes.  Being prepared is the very best position for the journey ahead, and the people on this site will help you all the way!  We'll anxiously be waiting to hear what the doctors say after Friday.  Take good care and keep learning!  Cath