How Bad Is Multiple Myeloma

My father in law has just found out that he has stage 3. He was 4 pints low of blood when in the hospital the calcium level was at 16 the told him he should not be living. That the  calcium level should be 10. My husband said he does not want to know how bad it really is. I think someone need to know what to expect.  They will not ask questions. Like is it any where else. He has to take treatments 2 times a week.  The doctor told him he could not wait to get a second opinion. Something had to be done today.So he got his 1st treatment on he has not been sick yet. Will it take a few treatments before he get sick. Please help me understand.

Dear tw2008,

How bad is Multiple myeloma?  A hard question to answer.  MM is bad in that it can affect so many areas of the body and there is, at this time, no cure.  Please, please remember that there are many new meds for treatment - more than there were even 5 or 6 years ago - that are helping MM patients live better and longer lives.  MM affects each person differently and each person reacts to treatment differently - some have a lot of side effects while others have very few.  There are also many  combinations of treatments out there - if one doesn't work well, another might.

You're right, SOMEONE needs to know what is going on with his disease.  You can't be in the dark with this disease.  Learn as much as you can about MM.  Reading the messages on this board will give you information and many messages also include sites that you can go to to find information, myeloma.org is a good site for information.  There are so many aspects of MM that it would take days to put them in this message.  After you've read up on MM, come back to the message board and ask about what you didn't understand.  The people here are great and very helpful.  They have a lot of knowledge and are willing to share. 

I'm sorry that I couldn't give you a simple answer to your question.  The fact is that there is no simple answer.  Once you start your research, you will see what I mean - then the questions will come and we will try and help with the answers.  Take care and get back to us.

Jan

Hi tw2008--

Jan has given you very sound advice.  You are at the start of a long journey with your father in law, and the first step is to gather as much information as you can about MM.  Armed with this information you will know what sort of questions to ask and will understand what the treatment is all about.  Before we can talk about what will happen to him we would need to know more about what his current standing is, what tests/xrays have been done and what sort of medication is being given to him.  You can Google 'Multiple Myeloma" and come up with many valid sites, including the International Myeloma Foundation in the USA - the IMF - who will provide you with heaps of very valid information in FREE easy to read booklets regarding every aspect of myeloma and the treatment journey.  Good luck to you, and remember that we are all here ready and willing to help as you proceed down this track.  Best wishes to you and your father in law, Cath.

 Sorry to hear about your F-I-L and his diagnosis. Everyone is right you need to read up for yourself and then come back and ask questions. Men often cannot face their mortality the same as women.  Her are some links for you to read:

 http://www.hopkinskimmelcancercenter.org/cancertypes/multipl

http://www.hopkinskimmelcancercenter.org/labresearch/article

On 4/7/2008 tw2008 wrote:

My father in law has just found out that he has stage 3. He was 4 pints low of blood when in the hospital the calcium level was at 16 the told him he should not be living. That the  calcium level should be 10. My husband said he does not want to know how bad it really is. I think someone need to know what to expect.  They will not ask questions. Like is it any where else. He has to take treatments 2 times a week.  The doctor told him he could not wait to get a second opinion. Something had to be done today.So he got his 1st treatment on he has not been sick yet. Will it take a few treatments before he get sick. Please help me understand.

 

Hello TW2008, so sorry to hear your news. My dad also was recently diagnosed with MM - Stage III. The three posters that already answered you below gave you very good advice, and they are probably three of the very best / most knowledgeable people on this board. And they are very right in that someone HAS to know what's going on, and in this case looks like it will be you.

For starters, do you know what treatments exactly your f-i-l will be having twice a week? If you could find out the name, that would help us give you some info at least, so as we could brief you a bit and tell you what to expect... (although they are correct when they say this disease effects everyone differently). I'm guessing it might be Velcade. Or possibly some kind of chemo? Is he having radiation also and does he have bone damage (lytic lesions/tumors/holes in bones) - did they say?

Keep us updated and i'm sure this board can help you with invaluable information. I am new to this also, but MM is a full time job and you have to be 'on top of it' and ten steps ahead (if you can) all the time. This forum will definitely assist with that.

 

 

On 4/8/2008 DebJr wrote:

Hello TW2008, so sorry to hear your news. My dad also was recently diagnosed with MM - Stage III. The three posters that already answered you below gave you very good advice, and they are probably three of the very best / most knowledgeable people on this board. And they are very right in that someone HAS to know what's going on, and in this case looks like it will be you.

For starters, do you know what treatments exactly your f-i-l will be having twice a week? If you could find out the name, that would help us give you some info at least, so as we could brief you a bit and tell you what to expect... (although they are correct when they say this disease effects everyone differently). I'm guessing it might be Velcade. Or possibly some kind of chemo? Is he having radiation also and does he have bone damage (lytic lesions/tumors/holes in bones) - did they say?

Keep us updated and i'm sure this board can help you with invaluable information. I am new to this also, but MM is a full time job and you have to be 'on top of it' and ten steps ahead (if you can) all the time. This forum will definitely assist with that.

 

 Some kind of chemo. Not sure what Meds My m-i-l said she has it all at home. I will find out tonight and be able to tell more,He had a treatment today. His blood was low they sent him to get 2 units of blood. He is having trouble going to the bathroom. Is that caused by the Chemo? I don't know about the bone damage.

Thanks for all the help.

 

On 4/7/2008 tw2008 wrote:

My father in law has just found out that he has stage 3. He was 4 pints low of blood when in the hospital the calcium level was at 16 the told him he should not be living. That the  calcium level should be 10. My husband said he does not want to know how bad it really is. I think someone need to know what to expect.  They will not ask questions. Like is it any where else. He has to take treatments 2 times a week.  The doctor told him he could not wait to get a second opinion. Something had to be done today.So he got his 1st treatment on he has not been sick yet. Will it take a few treatments before he get sick. Please help me understand.

Dear friend,

My heart goes out to you.   It's not easy to answer your question.   MM is not an illness whose course it is easy to predict, in my limited experience.  There are people here who will be able to do a much better job than me of answering your question.  

The absolute most important thing I can advise is that if there is ANY doubt in your mind that your father-in-law's physicians are completely up to date on the new developments in the treatment of MM, he has to be referred to someone who is aware of the new treatments.

The old chemo is out, so far as good therapies are concerned.    Depending on his genetics, he could really pull through this.    Right now he needs the best and most current advice.

 

Thinking of you,

mike

Good Evening TW;

"The absolute most important thing I can advise is that if there is ANY doubt in your mind that your father-in-law's physicians are completely up to date on the new developments in the treatment of MM, he has to be referred to someone who is aware of the new treatments.

The old chemo is out, so far as good therapies are concerned.    Depending on his genetics, he could really pull through this.    Right now he needs the best and most current advice."

Take Mike's advice as GOSPEL!

The progress made in treating this disease in the past few months would have the "ol' time" Drs. scratching their heads.

Take care;

Kevin

tw2008,

I am so sorry to hear about your father in law. 

I can only say that you are off to a good start with learning about MM.  I have utilized these wonderful folks to learn as much as I can about MM. 

My father was diagnosed in Jan 08 but experienced all the signs of MM since Oct 07.  Through our experiences with the treatment my dad has been put on you need to know the drugs side effects.  Know as much as you can about the drugs and treatments he taking. We have found through our many ER visits that the doctors are not familiar with the drugs MM patients may be taking.  These side effects can be life threatening.

Sincerely,

paryingdaughter 

 

 

 

From Anna,

Hi Tw, As the other poster said everyone is different.  Ask specific
questions.  I will say this if you don't know already MM effects the
blood, plasma and bones.  It make holes in the bones in the body.  Most
people find it when they break a bone. Now Dad didn't he had nose bleeds. Which can show up some I've learned.  Hope this info helps. 

Here are some links I found after Dad got sick.

Hi all, Here some Multiple Myeloma Links I've found over the years my Dad has had it.

The International Myeloma Foundation Is Here To… http://www.myeloma.org/  Web site

The Multiple Myeloma Research Foundation http://www.multiplemyeloma.org/  Web site

alt.support.cancer
(unread)  aol://5863:126/alt.support.cancer  AOL message board on all
kinds of cancer including Multiple Myeloma.

Blood & Lymph Disorders aol://5863:126/mBLA:107465  Another AOL message board.

IMF: Research: Clinical Trials http://www.myeloma.org/myeloma/research_trials.jsp  Clinical Trials site

Multiple Myeloma aol://5863:126/mBLA:107443  Message board.  Good
one.

Myeloma - Home Page from About.com  http://cancer.about.com/health/cancer/msub19.htm  Web site.

MyelomaExchange http://www.webspawner.com/users/myelomaexchange/ Web site.

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 Your friend,

Anna