That is what happens when you are sent to a hematologist that is new to multiple myeloma.
I wish I knew what I know now to ask the right questions.
I wish I had gotten a copy of the bone marrow bioposy.
Well, fingers crossed I get the tests to the new doctor so I can now ask better questions.
Forums
Re: Newly diagnosed and full of questions!
All my hematologist is basing my multiple myeloma diagnosis on is anemia and 50% plasma cells found in the bone marrow. That is it. He said I didn't show the ususal symptoms but since I was anemic I must have it. He kept saying he was confused, I am confused.
Re: Newly diagnosed and full of questions!
hI Dee777, I think that according to the CRAB criteria, if you have anemia you may have active myeloma. I think that a percentage of plasma cells over about 10% in your marrow would be indicative of myeloma also. As Stan says, you need to get more tests done too! Good luck with all of this..
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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: Newly diagnosed and full of questions!
Oh, and I did have a spike in my protein. But RA can cause protein in the blood and that is what my Rheumatologist used to base his diagnosis with other blood results. I just some that doesn't read the results according to their speciality. I need an independent review.
Re: Newly diagnosed and full of questions!
I just picked up my bone marrow biopsy and blood results.
The blood marrow report says I am missing chromosome 13 and 8.
Am I to assume no hope for me.
The blood results just showed as abnormal
RBC 2.37 low
HGB 7.7 low
HCT 22.2 low
RDW 17.9 high
Everything else was normal.
Thank you.
The blood marrow report says I am missing chromosome 13 and 8.
Am I to assume no hope for me.
The blood results just showed as abnormal
RBC 2.37 low
HGB 7.7 low
HCT 22.2 low
RDW 17.9 high
Everything else was normal.
Thank you.
Re: Newly diagnosed and full of questions!
There's hope. And new treatments coming along.
Get to a specialist so you're less confused about what's going on.
Get to a specialist so you're less confused about what's going on.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Newly diagnosed and full of questions!
Thank you. Will, tomorrow my husband is driving me a hour and half to see a doctor that deals with cancer patients. I want him to go over every thing and explain to me and answer questions.
A little back ground from me to understand where I am going.
About 4 years ago we started a home stead and raise our own meats, hogs, grass fed beef, turkeys, chickens, eggs, the gold on the farm our dairy cows. And we grow a garden and what I can't grow I buy from other local farmers and can and freeze.
I make our own yogurt, cheese, ect, you get the picture.
When I was diagnosed with RA I tried the meds for it and I had horrible side effects. I was down and couldn't get up. I have only taken short term antibiotics because my body just doesn't deal with drugs well at all.
So I am hoping for alternative treatments.
I have the resources here to do it.
The doctor I am seeing is a MD but also does alternative therapies.
I am going to try and get some blood work done later to see how it goes. If it doesn't, I can move on.
I have been reading about every one's treatments and every one is so different, what works, what doesn't, side effects, ect. I can't see any treatment that works for every one.
I contacted VMC here in Va and the specialist there won't talk to me except to have a set down about a transplant. That seems very popular here in VA. I won't survive a transplant and we can't afford it.
A little back ground from me to understand where I am going.
About 4 years ago we started a home stead and raise our own meats, hogs, grass fed beef, turkeys, chickens, eggs, the gold on the farm our dairy cows. And we grow a garden and what I can't grow I buy from other local farmers and can and freeze.
I make our own yogurt, cheese, ect, you get the picture.
When I was diagnosed with RA I tried the meds for it and I had horrible side effects. I was down and couldn't get up. I have only taken short term antibiotics because my body just doesn't deal with drugs well at all.
So I am hoping for alternative treatments.
I have the resources here to do it.
The doctor I am seeing is a MD but also does alternative therapies.
I am going to try and get some blood work done later to see how it goes. If it doesn't, I can move on.
I have been reading about every one's treatments and every one is so different, what works, what doesn't, side effects, ect. I can't see any treatment that works for every one.
I contacted VMC here in Va and the specialist there won't talk to me except to have a set down about a transplant. That seems very popular here in VA. I won't survive a transplant and we can't afford it.
Re: Newly diagnosed and full of questions!
Dee, that's the big problem with multiple myeloma. Patients don't have the same issues. Don't react to treatment the same. And, don't get the same side effects.
That's why I stress seeing a Multiple Myeloma Specialist. An oncologist may see a handful of multiple myeloma patients. A Myeloma specialist may see 100's and know what may work for the individual.
I was going to see a local oncologist but, also have a Myeloma specialist. The local onc was going to follow the specialist's lead. When he went off the track I had to leave him. He seemed to be going by the "standard of care" book. He looked at one number and said he thought it was time to start treatment and ended with SCT. The specialist disagreed. And, that's another wrench in the works. Doctors follow different protocols.
Do the research. Find a specialist or, two.
Just my opinion.
That's why I stress seeing a Multiple Myeloma Specialist. An oncologist may see a handful of multiple myeloma patients. A Myeloma specialist may see 100's and know what may work for the individual.
I was going to see a local oncologist but, also have a Myeloma specialist. The local onc was going to follow the specialist's lead. When he went off the track I had to leave him. He seemed to be going by the "standard of care" book. He looked at one number and said he thought it was time to start treatment and ended with SCT. The specialist disagreed. And, that's another wrench in the works. Doctors follow different protocols.
Do the research. Find a specialist or, two.
Just my opinion.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Newly diagnosed and full of questions!
Sorry for coming late to the party. To echo what many of the individuals have already stated. I would highly recommend that if there are questions in your diagnosis, you seek a consultation with a center of excellence. I know that there is a good myeloma group at VCU. John's Hopkins in Baltimore. We have collaborated with them on a number of clinical trials and projects in myeloma. I do not know where you live in VA or how close to Bethesda- NIH is there as well.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Newly diagnosed and full of questions!
Sorry to hear you are not getting a very definitive response from your oncologist. Maybe it's time to look for another especially if you are in fact in the smoldering stage where treatment can be deferred for a time. I would not wait to long however.
I had a sct and while it sounds scary, it is so much easier once they explain all the procedures and the process. In my case there was an enormous amount of info made available and people that really cared enough to take the time to answer questions. Once you enter the cell/gene therapy clinic all your options are discussed, does not have to be a transplant. It sounds anyway like you are a ways from reaching the point to make that decision.
Wish you well.
I had a sct and while it sounds scary, it is so much easier once they explain all the procedures and the process. In my case there was an enormous amount of info made available and people that really cared enough to take the time to answer questions. Once you enter the cell/gene therapy clinic all your options are discussed, does not have to be a transplant. It sounds anyway like you are a ways from reaching the point to make that decision.
Wish you well.
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lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
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