I don"t know what to do. My dad was diagnosed with multiple myeloma in November 2011. Since then, he's been in the hospital this will make 3 times. The first 2 when we first found out was until Jan. He had to get blood and have neck surgery. The second bacause he needed blood. My sister just called me and now he has pnemonia and a blood infection. His O2 sat was at 84% when he came in. Still doing more tests.
When this all started his doctor said he was optimistic because of dad's age. But last time he was in the hospital he told us he isn't going to do a bone marrow biopsy because he "can guess what stage" he i sbecause of all his complications. He has tumors pretty much everywhere on his body. He is always in pain. My sister is scared because she doesn't understand what anyone is talking about. I do somewhat since I'm a nurse but I've always worked in nursing homes. So I don't really deal with this kind of disease. So I'm just about as lost.
I don't even know what it is I want to know. I don't understand how he can guess his stage. What does that mean? Is he about end stage or what? I guess that is a place to start. Anybody have any idea?
I'm sorry. Like I said I'm scared. My dad has cried twice today and that scares me more. My father doesn't cry.
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winnowill79 - Who do you know with myeloma?: Father
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 53
Re: Really scared
The first thing I would do is find a Myeloma specialist. Disease stage is not the most important thing, but other information from a bone marrow biopsy is very important when choosing the therapy. "I can guess" is not good enough in my book.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Really scared
That's what I thought too. I've never heard any doctor I've worked with say that. With what I've looked up it looks like he's having about every complication there is. Even down to the renal failure. He only had about 1/3 kidney function when he went in the first time. Now he's incontinent. He's already talking about giving up. We try to encourage him as best we can. I just feel so useless because I can't do anything.
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winnowill79 - Who do you know with myeloma?: Father
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 53
Re: Really scared
HI Winnowill79
I am so sorry to hear about your Dad. You need to get him to a Specialist that deals with multiple myeloma. He definitely should have a BMbx. There are several people that were in Stage 3 that post on this site that have gotten treatment and are doing well. Hang in there and dont be complacent. As rum&ting said the BMbx can help decide which treatment to use. Look on the Resources page on this site. This will help you find options in your area.
Good Luck and Gods Blessings
Art
I am so sorry to hear about your Dad. You need to get him to a Specialist that deals with multiple myeloma. He definitely should have a BMbx. There are several people that were in Stage 3 that post on this site that have gotten treatment and are doing well. Hang in there and dont be complacent. As rum&ting said the BMbx can help decide which treatment to use. Look on the Resources page on this site. This will help you find options in your area.
Good Luck and Gods Blessings
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Really scared
Hi Winnow...really sorry to hear about your Dad's troubles. He must have been diagnosed with multiple myeloma by blood tests? And he was getting blood transfusions because of anemia? And the renal problems etc. Wow....a lot to handle all at once.
Has he already started on some sort of chemotherapy, or are they waiting for him to get out of the hospital? Definitely I agree with Art and Rumnting that an app't with a specialist would be in order, either a specialist in myeloma or a haematological oncologist. You don't say where you live, but if in the US there is a list above as pointed out. If in Canada call your nearest cancer centre for advice. A bone marrow biopsy will confirm the diagnosis of multiple myeloma, but blood tests and urine tests are also routinely used. They also would do a 'skeletal survey', a whole body set of X-rays. You can also get more information from other sites devoted to myeloma, linked above also.
Your Dad is young yet and it's just amazing what modern medicine can do to help people. I know I was in 'stage 3' at the time of diagnosis, but my oncologist didn't even tell me that, just started treating it aggressively, and am in good health again now, three years later. No matter what happens, I have already been granted a new lease on life. Very best wishes and good luck to him!
Has he already started on some sort of chemotherapy, or are they waiting for him to get out of the hospital? Definitely I agree with Art and Rumnting that an app't with a specialist would be in order, either a specialist in myeloma or a haematological oncologist. You don't say where you live, but if in the US there is a list above as pointed out. If in Canada call your nearest cancer centre for advice. A bone marrow biopsy will confirm the diagnosis of multiple myeloma, but blood tests and urine tests are also routinely used. They also would do a 'skeletal survey', a whole body set of X-rays. You can also get more information from other sites devoted to myeloma, linked above also.
Your Dad is young yet and it's just amazing what modern medicine can do to help people. I know I was in 'stage 3' at the time of diagnosis, but my oncologist didn't even tell me that, just started treating it aggressively, and am in good health again now, three years later. No matter what happens, I have already been granted a new lease on life. Very best wishes and good luck to him!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Really scared
Under most conditions a statement like "I can guess" would raise my eyebrows. But from your description, I take it that bone affectation is advanced. This could mean that your dad's bones are so brittle, that the information gleaned from a biopsy or aspiration isn't worth the risk of shattering the bone when taking the sample. That's the state I'm currently in --my doctor decided against a biopsy recently because of the high risk of severe damage. When the bones become brittle, a large bore needle penetration can have the same effect on the bone as trying to drive a nail through a glass jar. So I think rushing to judge the doctor's choice could be an error. A biopsy is really only going to reveal the presence of cells and give a count for that specific area. This is useful on primary diagnosis, but its importance drops when a diagnosis exists and other manifestations tell the staging story. I suggest a conversation with the doctor, asking him about your concerns.
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Bob - Name: Bob Kirkpatrick
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 08, 2008
- Age at diagnosis: 60
Re: Really scared
He was diagnosed through blood tests and CT scan revealed all the lesions. From what the doctor said he's been working with multiple small fractures on his spine that healed on their own for at least 4 years. He injured himself at work againand was going to PT which on the last visit injured him again. So when he went to the doctor he was a direct admission after the doctor got his bloodwork. Said dad would have died in a couple of days if he hadn't come in.
I think they are worried about his bone brittleness for the biopsy. After the neck surgury he spent 4 days in ICU and got more blood. They are really worried about him falling. That's why my sister moved in because she is the only one that could.
He went through radiation while in the hospital the first time. And is currently undergoing chemo. Probably why he has pnemonia now since the chemo weakened his immune system. My sister says he's doing better. His pain is better controlled in the hospital.
He is planning on doing the stem cell transplant also. We're trying to talk him into moving in with me and my husband because my sister is 21 and has 3 kids she is trying to care for too and this is taking a toll on her. We live 2 hours away so I can't help much while they are there since I work full time. But up here there are more family to help.
I think they are worried about his bone brittleness for the biopsy. After the neck surgury he spent 4 days in ICU and got more blood. They are really worried about him falling. That's why my sister moved in because she is the only one that could.
He went through radiation while in the hospital the first time. And is currently undergoing chemo. Probably why he has pnemonia now since the chemo weakened his immune system. My sister says he's doing better. His pain is better controlled in the hospital.
He is planning on doing the stem cell transplant also. We're trying to talk him into moving in with me and my husband because my sister is 21 and has 3 kids she is trying to care for too and this is taking a toll on her. We live 2 hours away so I can't help much while they are there since I work full time. But up here there are more family to help.
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winnowill79 - Who do you know with myeloma?: Father
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 53
Re: Really scared
It's good to know that your Dad is already getting treated for myeloma and his other health problems and I hope that he is on the mend soon too. Sounds like he has great support from your family. I can understand why getting a bone marrow biopsy was not at the top of priorities
Good luck and don't forget that you can always get info from this site!
Good luck and don't forget that you can always get info from this site!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Really scared
My thoughts and prayers are with him, you and the family.
God Bless
Paul
God Bless
Paul
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Paul Wilson - Name: Paul W
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 2012
- Age at diagnosis: 51
Re: Really scared
Hi I was in my mid 60's & I was Diagnosed in 2004 due to SEVERE pain in my back I was given pain pills & sent home I got worse had pain in my hips,chest & back & my wife took me back to the Hospital & they had to use a small crane (much like an auto engine lift) to get me out of the car ,this time I was admitted and after doing blood tests they did a bone marrow bio. which indicated I had multiple myeloma I was put on Thalidomide & Dex for 10 months at that point my Oncologist declared that I was in Remission & took me off the drugs , I am still in remission 8 years later doing blood tests every 4 months ,which so far thank God have continued to look good , my current Oncologist has done several 24 hr urine tests and said my kidneys are still functioning but not at 100% I do notice that I'm up at least 3 times a night to dash (limp)to the toilet & most of the time there is plenty of fluid (perhaps BP pills I'm taking?) have lost approx 4" in height from the time I was in my 20's till now I believe most of that in the last 10 years? I still have some residual back pain but only when I stand for extended lengths of time. I do have other what I consider side effects from the treatment but won't go into that as I can not verify for sure that the meds caused the problems. I am now 73 years of age and am still trying to enjoy what ever time the Good Lord see's fit to allow me , The main reason I'm writing you is so that you can see that there is the possibility of coming back from the edge , every day they are finding new med's to kill off these nasty cancers , I just read an article in the New Science Mag.org that they have found a drug that is extremely effective with Advanced Limphoma -some of their test subjects experienced complete remission & they are now checking checking to see if its effective with other Blood Cancers X cross our fingers . I'm trying to figure out if there is any where on this site I can post the Link for That Article -I'm sort of new to this site & trying not to make a blunder in posting. Best wishes to you and your Dad . N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
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