My husband and I had our visit with the oncologist today and, Praise, there are no lesions, so he has no bone involvement. Calcium level still good, not anemic, possible renal but, as stated in previous post, possibility from early childhood disease Schonlein Purpura.
When they did the BMB it came back as being 10 percent . As our doctor stated, he was on the borderline for smoldering but his initial skeleton x ray showed some possible small lytic lesions on his arm between his elbow and wrist. But PET scan came back perfect, no lesions.
What did concern him was the M spike. Initially on October 1st it was 0.13 g/dL, then October 29th it jumped to 1.51. But, as he said, his other numbers did not justify such a jump and he explained that sometimes this test can be off, so we are going to do another blood test in two weeks with visit a few days later and if the M spike is still high he wants us to go to MD Anderson for a second opinion, which we will do, as he said my husband is on the line and could be pushed either to treatment or smoldering and he wants a second opinion.
If the specialist at MD Anderson says treatment then he will do treatment but if the doctor says smoldering he will monitor. Our oncologist also said that with the new guidelines suggesting that perhaps treatment for smoldering but he is not sure if he is on that bandwagon yet, so all and all I would call today a successful visit.
Would you?
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PET scan results - no bone lesions
Last edited by Mildred on Fri Nov 07, 2014 4:15 pm, edited 4 times in total.
Re: PET scan results - no bone lesions
Mildred-
It sounds like the oncologist that you are seeing presently had a good handle on a plan of action for trying to confirm whether your husband should begin treatment or not. His suggestion to get a 2nd opinion at MD Anderson and your scheduled appointment there are right on target.
Your husband appears to be in good hands.
Nancy in Phila
It sounds like the oncologist that you are seeing presently had a good handle on a plan of action for trying to confirm whether your husband should begin treatment or not. His suggestion to get a 2nd opinion at MD Anderson and your scheduled appointment there are right on target.
Your husband appears to be in good hands.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: PET scan results - no bone lesions
Nancy,
Our oncologist is fantastic. He is also a oncologist/hematologist and extremely intelligent and young at 38. What I like about him is that he is down to earth and will spend all the time you need. Every visit we have had with him has been almost an hour, and he does this with all his patients, which sort of puts you behind in your schedule but who cares if he gives you the information and the care you need.
We were very fortunate to be accepted by him, because he is so good that he does not take any new patients. Another thing I like about him is that he does not have a ego; he has no problem sending you for a second opinion to confirm what he believes is the best treatment for you, so yes we are feeling very blessed today.
Mildred
Our oncologist is fantastic. He is also a oncologist/hematologist and extremely intelligent and young at 38. What I like about him is that he is down to earth and will spend all the time you need. Every visit we have had with him has been almost an hour, and he does this with all his patients, which sort of puts you behind in your schedule but who cares if he gives you the information and the care you need.
We were very fortunate to be accepted by him, because he is so good that he does not take any new patients. Another thing I like about him is that he does not have a ego; he has no problem sending you for a second opinion to confirm what he believes is the best treatment for you, so yes we are feeling very blessed today.
Mildred
Re: PET scan results - no bone lesions
Here are my husband's test results.
Protein SPA 7.9
Albumin SPE 4.50
A/G Ratio SOE 1.33
Alpha 1 globulin 0.39
Alpha 2 globulin 0.58
Beta globulin 0.66
Gamma Globulin 1.77
M Spike 1.55
Kappa Free Light Chain 32.2
Lambda Free Light Chain 15.2
Kapp/Lamba Free Ratio 2.12
I hope I have included all that is needed, our oncologist said that my husbands M spike had jumped from 1.38 to 1.55 but the other numbers do not justify such a jump, so he is testing his blood work again in two weeks to see if the M spike is still the same. He explained that the lab testing is complex and he wants to be sure of the results again. His BMB was 10 percent.
Our oncologist says that if numbers are the same he is sending us out to MD Anderson to see a myeloma specialist because as he says my husband is basically on the border line of monitoring or treatment and he wants a second opinion. If the specialist at MD Anderson says to monitor then he will, but if they recommend treatment then that is what we will do.
Our oncologist is also a hematologist and wants to be sure that he makes the correct diagnosis so that in the future we will not have more difficulties in handling this disease. Our oncologist says that he is not sure of jumping on the band wagon of the new guidelines of treating myeloma in the smoldering stage. Our oncologist is very intelligent and we have all the confidence in him, but if the test are the same we are going to MD Anderson.
I basically just want opinions of you here are more experienced with this disease then I.
Thank You !
Protein SPA 7.9
Albumin SPE 4.50
A/G Ratio SOE 1.33
Alpha 1 globulin 0.39
Alpha 2 globulin 0.58
Beta globulin 0.66
Gamma Globulin 1.77
M Spike 1.55
Kappa Free Light Chain 32.2
Lambda Free Light Chain 15.2
Kapp/Lamba Free Ratio 2.12
I hope I have included all that is needed, our oncologist said that my husbands M spike had jumped from 1.38 to 1.55 but the other numbers do not justify such a jump, so he is testing his blood work again in two weeks to see if the M spike is still the same. He explained that the lab testing is complex and he wants to be sure of the results again. His BMB was 10 percent.
Our oncologist says that if numbers are the same he is sending us out to MD Anderson to see a myeloma specialist because as he says my husband is basically on the border line of monitoring or treatment and he wants a second opinion. If the specialist at MD Anderson says to monitor then he will, but if they recommend treatment then that is what we will do.
Our oncologist is also a hematologist and wants to be sure that he makes the correct diagnosis so that in the future we will not have more difficulties in handling this disease. Our oncologist says that he is not sure of jumping on the band wagon of the new guidelines of treating myeloma in the smoldering stage. Our oncologist is very intelligent and we have all the confidence in him, but if the test are the same we are going to MD Anderson.
I basically just want opinions of you here are more experienced with this disease then I.
Thank You !
Re: PET scan results - no bone lesions blood work included
Mildred,
I guess I'm still missing something here.
Usually, if someone were to require treatment, they would need to be symptomatic (i.e meet one of the CRAB criteria on p 5 of the following),
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf ,
or meet one of the new 3 criteria outlined here:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Why is your oncologist saying that your husband is on the borderline of needing treatment?
From your earlier posts, you said he has:
No hypercalcmia
Some kidney issues, but due to childhood disease?
No anemia (HGB = 13.2)
No bone lesions (confirmed by PET/CT).
He only has a Kappa/Lambda FLC ratio of 2.2
He only has 10% plasma %.
Is it the renal issues that are causing your doc to think he many need treatment?
I guess I'm still missing something here.
Usually, if someone were to require treatment, they would need to be symptomatic (i.e meet one of the CRAB criteria on p 5 of the following),
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf ,
or meet one of the new 3 criteria outlined here:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Why is your oncologist saying that your husband is on the borderline of needing treatment?
From your earlier posts, you said he has:
No hypercalcmia
Some kidney issues, but due to childhood disease?
No anemia (HGB = 13.2)
No bone lesions (confirmed by PET/CT).
He only has a Kappa/Lambda FLC ratio of 2.2
He only has 10% plasma %.
Is it the renal issues that are causing your doc to think he many need treatment?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: PET scan results - no bone lesions
Hi Billy,
Thank you so much for answering my many questions. You have been so much help with this and again thank you!
I have no idea, I believe perhaps he is acting on the side of caution perhaps? The only criteria is the renal issue, which they do not know if this is a result of earlier childhood disease, as I mentioned earlier my husband has always had mild renal failure and he is 69 years old but has never had any problems with this.
My husband is extremely cautious with his health and sees his internist regularly for check ups. I included his test results also since I realized I did not include them when I posted his PET scan results.
One situation that may have some influence on his decision to send him to MD Anderson if the numbers are still the same is that my family knows the oncologist. My stepsson who is 37 had testicular cancer five years ago and this was his oncologist and my husband went with our son to every treatment and both he and my son got to know the doctor very well -- so well that this last month they had a fund raiser in our town for awareness of cancer in men and my stepson had a big part in organizing this with the oncologist. The oncologist is very well known and comes highly recommended, so perhaps he is siding with caution.
My husband has extremely good health insurance, a supplement with his Medicare, and we are blessed to be able to afford the trip if necessary. I know the doctor did say that he did not want to make a decision and regret his decision after, so he wanted someone else's opinion also.
So there it is, the rambling of a nervous spouse, lol. My husband is doing extremely well with all of this and has the most positive attitude, I am extremely blessed to have him as my husband and want only the best care for him so that he can enjoy his life as he is doing now.
What is your opinion of a M spike being 1.55?
All my gratitude, Mildred
Thank you so much for answering my many questions. You have been so much help with this and again thank you!
I have no idea, I believe perhaps he is acting on the side of caution perhaps? The only criteria is the renal issue, which they do not know if this is a result of earlier childhood disease, as I mentioned earlier my husband has always had mild renal failure and he is 69 years old but has never had any problems with this.
My husband is extremely cautious with his health and sees his internist regularly for check ups. I included his test results also since I realized I did not include them when I posted his PET scan results.
One situation that may have some influence on his decision to send him to MD Anderson if the numbers are still the same is that my family knows the oncologist. My stepsson who is 37 had testicular cancer five years ago and this was his oncologist and my husband went with our son to every treatment and both he and my son got to know the doctor very well -- so well that this last month they had a fund raiser in our town for awareness of cancer in men and my stepson had a big part in organizing this with the oncologist. The oncologist is very well known and comes highly recommended, so perhaps he is siding with caution.
My husband has extremely good health insurance, a supplement with his Medicare, and we are blessed to be able to afford the trip if necessary. I know the doctor did say that he did not want to make a decision and regret his decision after, so he wanted someone else's opinion also.
So there it is, the rambling of a nervous spouse, lol. My husband is doing extremely well with all of this and has the most positive attitude, I am extremely blessed to have him as my husband and want only the best care for him so that he can enjoy his life as he is doing now.
What is your opinion of a M spike being 1.55?
All my gratitude, Mildred
6 posts
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