[Amelie]

Is this a disaster?

by Amelie on Tue Aug 02, 2011 6:46 pm

John was at the hospital today to have a counsultation with the doctor. He was told that his m component had gone up a little bit. The doctor didn't
mention the exact number and he said that otherwise everything looks fine.

Is there reason to worry? Will it continue to rise? Or can we expect it to be stable for a while? Should there be given any treatment to keep it on the level it is now?

Oh my God, I had not expected this. It is exactly one year ago John had his sct and he is doing so well working almost full time.

[djkvegas]

Re: Is this a disaster?

by djkvegas on Wed Aug 03, 2011 11:09 am

Not necessarily. Concern yes. He should always request to have a copy of his Bloodwork report. This will allow him to keep an on his status, Did the doctor order any other testing? If not don;t worry. Just a note, Always be vigilant with Myeloma. Congrats on his over a year remission

[Dr. Edward Libby]

Re: Is this a disaster?

by Dr. Edward Libby on Wed Aug 03, 2011 4:51 pm

Hello Amelie,
The next m-component measurement will be especially important. If it continues to rise in a significant fashion then your hematologist/oncologist will have to consider evaluating John for relapsed disease. Generally patients have their m-components checked every 1-2 months after a transplant. I tend to see patients and check blood levels every 4-6 weeks.

[Nanette]

Re: Is this a disaster?

by Nanette on Wed Aug 03, 2011 6:21 pm

Don't panic, honey.

In our case, Dom's M spike was not existent after his SCT for about 18 months. All the time, it was ZERO, then was .35 Three months later, it was .22 A couple of weeks ago, there was no Myeloma in his blood or urine. Bone scan showed no lesions. He's been clean. Just celebrated his 2nd birthday.

As the good doctor suggested, be certain to get blood work results and ASK QUESTIONS. Knowledge is power.... especially when dealing with multiple myeloma.

Best of luck!

[Amelie]

Re: Is this a disaster?

by Amelie on Wed Aug 03, 2011 7:19 pm

Thanks everyone for the replies.

I guess we will first have to find out how much it rised. The level of information is rather poor and John isn't good demanding it. Apparently the doctor didn't find this alarming.

Until the beginning of this summer he was checked every month but then they said it was enough every 3rd month. Is that too rare?

I have another question I would be grateful to hear opinions about.

After the sct John was told there was no evidence of the disease in his bone marrow. His m component was 1.7 and dropped further down to 1.3 (what it is now we don't know, but apparently a bit higher). We were never told if he received complete response, very good partial response or what. Do you know how it is measured? I don't know if it is the m component or the bone marrow that counts.

Thanks a lot
Amelie the Confused

[Boris Simkovich]

Re: Is this a disaster?

by Boris Simkovich on Wed Aug 03, 2011 10:45 pm

Hi Amelie,

This recent posting here in the forum,

https://myelomabeacon.org/forum/complete-response-definition-t526.html?hilit=complete%20response#p2093

provides links to several sources with information on how the different response rates for myeloma treatment are defined.

Good luck!

- Boris.

[Amelie]

Re: Is this a disaster?

by Amelie on Thu Aug 04, 2011 4:13 am

Thanks a lot Boris!
It seems that there are different ways to estimate this. Not easy!

[Amelie]

Re: Is this a disaster?

by Amelie on Thu Aug 04, 2011 4:33 pm

Today we got a bit more of information.

The M component had rised from 1.3 to 2.6. The doctor describes the disease as "slumbering" and he says they won't do anything until it has passed 6.0, which he says might take a couple of years. How he can say so I don't know. It was 1.3 this spring and now it has doubled sad But of course I hope he is right. Does it sound reasonable?

It surprises me because John is doing so extremely well - much better than all the other patients he meets when he gets the Aredia drop each month and much better than most patients I have read about. He works full time or almost full time and he is cutting trees in the garden.

[dubll]

Re: Is this a disaster?

by dubll on Thu Aug 04, 2011 8:59 pm

I have Igg Kappa, dx 2007. Auto SCT with very good partial remission in 2007. Agree with other posters to keep copies of his results. I have a folder with sections for it all: blood work, skeletal surveys, BMB, any other results that I get. Good luck, focus on today as tomorrow is not here yet. Linda

[Christina]

Re: Is this a disaster?

by Christina on Fri Aug 05, 2011 10:30 am

I am not sure why the doctor is saying slumbering when his m protein is going up and fast. It seems some action should be taken to get the m protein down. Even without any sign of lesions, I would be very worried if it was me. When I relapsed my m protein was .3 and I had a rib fracture. I immediately started Revlimid and no I have no detectable m protein.
I would really check this out.
Just my 2 cents.
Christina