My last visit to oncologist reveals that my Kappa Free Light chains have been decreasing for the last 6 months, my Kappa/Lambda free light chain ratio is also decreasing. I am not doing any treatment and have never done treatment. Should I be jumping up and down in joy?
Is this common for someone with MGUS?
The lesion on my skull has not changed in over a year and no new lesions were found in recent skeletal exam. I had a skull injury and now am wondering if I ever had a lesion or just a bad head injury?
When I go for my 3 month exams I always want to do my blood work a week in advance so the test results will be available for my doctor and I to discuss. The doctor keeps wanting me to come in early and have blood work done just before my appointment. Now the most important tests take longer than 30 minutes for results. So what is the point in having the blood work done if I cant discuss with the doctor. The electronic records for this facility are very user unfriendly. I went to have blood drawn recently and the technician drew only two vials of blood and I told her I usually had 4-5 vials of blood drawn. Turns out that only the Kappa Free Light Chain test was done, so I am missing some 50 tests and no M-spike was done either. Anyone here think I should be looking for a new doctor?
I originally went to oncologist that wanted to start treatment until results of my BMB showed my plasma in bones was 5-10% so treatment was put off ( they were going to start me on Revlimid and Zometta), this first oncologist was preparing for board tests and was pretty much out of pocket for months and the Physicians assistant gave me the BMB results, I felt like I had to pretty much pry any information from her. I was pretty disappointed so I scheduled a visit to Baylor at Dallas and had blood work and x-rays done as a second opinion. The oncologist at Baylor said yes the lesion on skull was definitely myeloma and I should begin with monthly bone strengthener, but should probably have that done near home in Oklahoma City rather than drive to Dallas for just that.
I schedule an appointment at the new OU Cancer Center in OKC, very nice facility as was the new facility in Dallas. I have been having bloodwork done on regular basis since discovering the M-protein. I am not happy with my current doctor but I have now been to 3 different doctors and am pretty much put off by the whole situation. I feel like it is as much a business as it is a savior... I mean I would have started treatment at the 1st doctor if I had not been somewhat stubborn and in denial...as it turned out I shouldn't have started treatment, I was getting set with my insurance company to order Revlimid and had already been scheduled to get zometta IV... after the results of the BMB everything was put on hold ( my kappa freelight chain ratio was about 16 at that time, m protein has varied from 0.8 to 1.1 my kappa freelight chain has gone from 130 to 90 now...)... so after not seeing the first doctor and the poor presentation I got from the physicians assistant I decided I needed a specialist.... that's when I went to Baylor... where I was told I definitely had Multiple myeloma and needed to start treatment I went into a deep depression... I finally scheduled to see a new physician in Oklahoma City at the new cancer center.. I know this post is going in circles.... what I am trying to present.... does anyone else feel like they are not confident in their doctors? and back to the title of the post... what does it mean if the free light chain test is decreasing without treatment?
Now it seems that possibly the lesion on my skull was simply a head injury ( well I had a gash complete with several staples to keep it closed)... and the first 2 doctors were going to start IV treatment to strengthen bones..... and maybe that was never needed... so now the 3rd doctor never wanted to start the bone treatment as she stated that there were side effects. So my real question, how do you find a doctor you are comfortable with, that you feel is really looking out for you and not just ordering treatment...
I read these posts, and realize that the number of people that actually post here relative to people going to doctors and diagnosed with Myeloma is very unbalanced... most people just trust what their doctor says, but you can see in my case I would have been treated un-necessarily...now I am wrestling with a doctor that wants me to come in for consultation with no results to discuss ( wants me to do blood work just previous to the appointment).
Frustrated
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Re: Kappa/Lambda Free Light Chain Ratio decreasing- reasons?
Hey Bob,
So, a few things.
1. According to my oncologist, it is fairly common to see one's numbers vary on their own with MGUS and SMM (I am SMM and my numbers have been dropping over the past 6 months. I attribute this to supplements, diet and exercise, but my doc says that my trend is nothing out of the ordinary that he hasn't seen before. I hope to prove my doc wrong, but I will have to wait a year or more to see if this really is a longer term trend). I hope it is a longer trend for you and not just the normal variations that one sees with the disease. In the meantime, I would just celebrate the fact that your numbers aren't increasing. Just how much have your markers dropped?
2. Boy, I understand your frustration with your doc! If not to discuss one's latest lab results at the regular appointments, what then is the point of meeting with the doc? If I were you, I would look for a new doc. If that isn't an option, I would be very assertive with your doc to insist on having the tests done several days before the appointment and to spend some good quality time with him/her during each appointment going through the changes in the data. I chart my markers and update them on the fly during each appointment. I then discuss which items are the best (or worst) trends and what it all means for me . I also discuss his opinion on new treatments that I have heard about on this forum, or ask him questions I may have come up with since my last visit. At this point, he always expects to see the charts of my markers and my notebook of questions by my side. He is happy to spend whatever time is required to make me feel comfortable. I hope you can find a doc with similar patience, expertise and compassion. Most of the myeloma specialists I have met are similar to my current doc.
3. If you decide to look for a new doc, perhaps some folks on this forum in the Oklahoma area can recommend somebody? You might also try contacting the following group for a recommendation:
Leukemia and Lymphoma Society
(918) 492-0792 • (888) 828-4572 toll-free
http://www.leukemia-lymphoma.org
General support groups for people who have received a blood-related cancer diagnosis. Myeloma support group.
4. You may also find that there is a remote specialist that will work with you over the phone to periodically review your lab results that you have done locally. Doing this will likely require at least one in-person appointment in order to kick off the relationship.
Hope this helps.
So, a few things.
1. According to my oncologist, it is fairly common to see one's numbers vary on their own with MGUS and SMM (I am SMM and my numbers have been dropping over the past 6 months. I attribute this to supplements, diet and exercise, but my doc says that my trend is nothing out of the ordinary that he hasn't seen before. I hope to prove my doc wrong, but I will have to wait a year or more to see if this really is a longer term trend). I hope it is a longer trend for you and not just the normal variations that one sees with the disease. In the meantime, I would just celebrate the fact that your numbers aren't increasing. Just how much have your markers dropped?
2. Boy, I understand your frustration with your doc! If not to discuss one's latest lab results at the regular appointments, what then is the point of meeting with the doc? If I were you, I would look for a new doc. If that isn't an option, I would be very assertive with your doc to insist on having the tests done several days before the appointment and to spend some good quality time with him/her during each appointment going through the changes in the data. I chart my markers and update them on the fly during each appointment. I then discuss which items are the best (or worst) trends and what it all means for me . I also discuss his opinion on new treatments that I have heard about on this forum, or ask him questions I may have come up with since my last visit. At this point, he always expects to see the charts of my markers and my notebook of questions by my side. He is happy to spend whatever time is required to make me feel comfortable. I hope you can find a doc with similar patience, expertise and compassion. Most of the myeloma specialists I have met are similar to my current doc.
3. If you decide to look for a new doc, perhaps some folks on this forum in the Oklahoma area can recommend somebody? You might also try contacting the following group for a recommendation:
Leukemia and Lymphoma Society
(918) 492-0792 • (888) 828-4572 toll-free
http://www.leukemia-lymphoma.org
General support groups for people who have received a blood-related cancer diagnosis. Myeloma support group.
4. You may also find that there is a remote specialist that will work with you over the phone to periodically review your lab results that you have done locally. Doing this will likely require at least one in-person appointment in order to kick off the relationship.
Hope this helps.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
2 posts
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