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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Thu Dec 29, 2016 5:13 am

Hello everyone,

I have an update on my Complete Blood Count and Metabolic Panel numbers since I added Darzalex to an existing Kyprolis regimen that had stopped working.

As mentioned in a previous post, as of December 15th, my Kappa Free Light Chains (I have Kappa Light Chain multiple myeloma) declined from 11.3 mg/dL to 1.66 mg/dL, which is within the normal range of 0.33-1.94 mg/dL. The 11.3 mg/dL value was measured on November 15th, before starting Darzalex.

I had said in that post that I would post other CBC and Metabolic Panel Numbers from December 15th. However, I now have these values from December 27th and I thought it would be more useful to share these most recent numbers.

Comparing the November 15th CBC values to values measured on December 27th, the following changes are notable:

White blood cell count went from 4.2 K/uL to 8.3 K/uL
Red blood cell count went from 3.3 M/uL ro 3.6 M/uL
Hemaglobin went from 10.8 g/dL to 11.8 g/dL
Platelets went from 394 K/uL to 255 K/uL
Lymphocyte % from 38.9 to 24.2
Monocyte % from 17.5 to 9.9

Making the same comparison between November 15th and December 27th Metabolic Panel values:

Sodium from 139 mmol/L to 136 mmol/L
Potassium from 3,5 mmol/L to 3.8 mmol/L
Glucose from 146 mg/dL to 119 mg/dL
BUN from 33 mg/dL to 24 mg/dL
Creatinine from 1.6 mg/dL to 1.1 mg/dL
BUN/Creatinine from 21 to 22
Total Protein from 7.8 g/dL to 7.4 g/dL
Albumin from 2.8 g/dL to 3.3 g/dL
Calcium from 9.5 mg/dL to 9.0 mg/dL
Bilirubin from 0.3 mg/dL to 0.5 mg/dL
Alkaline Phosphatase from 54 U/L to 59 U/L

Reference (normal) ranges for these values are available in my earlier post containing the November 15th numbers.

Note that some values have improved, and some have deteriorated, but not significantly, according to my oncologist. Some have improved to the point of falling within the reference range, and some have deteriorated to the point of falling out of the range. An example of the former is creatinine; an example of the latter is sodium.

One thing that worried me is that AST (aspartate aminotransferase) went from 32 U/L to 46 U/L, where the reference range is 5-37 U/L. So it is now too high, which is a sign of potential liver damage. My oncologist told me that my other liver markers were normal, so he was not too concerned about this but was keeping an eye on it. I did not include AST in my earlier post containing the November 15th values, but will include it from now on.

The December 27th values were measured after my 6th Darzalex infusion. I had my 7th today. I have one more next week before going from weekly to every other week infusions.

I should have another update on my free light chains within about two weeks.

I want to wish everyone a Happy New Year, and the best of luck with whatever treatments you are pursuing.

May 2017 be a good year for all of us, and for everyone battling cancer.

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by Multibilly on Thu Dec 29, 2016 10:18 am

Mr. PH,

It seems like all of your CRAB-related markers moved in the right direction (i.e. calcium and creatinine are lower, hemoglobin and RBC are up). Coupled with your FLCs coming down so nicely , the minor deterioration in your other markers due to drug side effects seems almost inconsequential.

Does your doc think that your bone pain will improve with time given your good biochemical results so far?

Wishing you continued success.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Thu Dec 29, 2016 10:59 am

Hi Multibilly,

He does think my bone pain will improve, but he also told me that it may not.

Thanks very much for looking at the post and for your good wishes.

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by blizard49 on Thu Dec 29, 2016 12:23 pm

Mr. P,

Thanks for your excellent posts. I could only add that prior to my autologous stem cell transplant, I never achieved low numbers from induction treatments. My M-spike stayed at 1.4 g/dl (14 g/l), so the doctors decided to go for the transplant anyway. It has given me four years of very low numbers, no symptoms, only 5 mg/day of Revlimid.

I would definitely go for the transplant if possible, but best of everything to you.

Eric

blizard49
Name: Eric
Who do you know with myeloma?: Myself
When were you/they diagnosed?: March 2012
Age at diagnosis: 68

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Fri Dec 30, 2016 6:19 am

Thank you very much, Eric.

I am considering a transplant. Great news about your response to getting one. I hope it continues indefinitely!

You say you are now on Revlimid maintenance. Did you try Revlimid during induction?

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Mon Jan 02, 2017 8:50 am

My latest free light chain numbers, as of December 28th, after 6 Darzalex infusions:

Kappa free light chain level: 1.97 mg/dL (0.3300-1.94 ml/dL reference range)
Lambda free light chain level: 0.1230 mg/dL (0.5700-2.60 ml/dL reference range)
Kappa / lambda ratio: 16.0 (0.2600-1.6)

Here are the values from December 12th:

Kappa free light chain level: 1.66 mg/dL
Lambda free light chain level; 0.0336 mg/dL
Kappa / lambda ratio: 49.4

and, here are the values from November 15th, before starting Darzalex:

Kappa free light chain level: 11.3 mg/dL
Lambda free light chain level: 0.152 mg/dL
Kappa / lambda ratio: 74.3

As you can see, after a drop from 11.3 to 1.66 mg/dL, my most recent reading shows an increase from 1.66 to 1.97 mg/dL for my kappa free light chain level, which is my "involved" light chain.

The question is whether this is a fluke, or a sign of beginning serological relapse.

I experienced the same scenario when Kyprolis stopped working – the increases were small at first, and a number of people counseled me against jumping to conclusions, but as the kappa number kept climbing, it became clear that I was relapsing.

I hope that isn't the case here again; it would certainly signal a very fast relapse if it is.

What a way to begin 2017!

Note also the craziness in my lambda (my "uninvolved" light chain) numbers and the ratio. My oncologist told me to ignore these, as he believed they signaled myelosuppression caused by the treatment. Still, one can't stop from wondering if there is not some connection.

I see my oncologist this coming Wednesday, but I'll bet he will recommend staying the course on the theory that it is some kind of measurement anomaly. I'll post a followup after I see him.

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by mikeb on Tue Jan 03, 2017 3:32 pm

Hi Mr. PH,

First of all, Happy New Year!

I'll be interested to hear what your doctor has to say about your latest numbers. But in the meantime, here's my take. I think the most important thing is that your kappa / lambda ratio is continuing to go down. In fact, there's a big drop in the last two weeks. So that's definitely a good thing.

Also, the increase in your kappa is small. I've been told by a representative from the company that makes the Freelite test used for these measurements that kappa and lambda free light chain levels can vary by up to 30% simply because of normal day-to-day changes. Your kappa increase is within that 30%, so I wouldn't worry about this one increase.

Of course, that's easy for me to say because it's not my free light chain numbers we're looking at here. I understand how it is tough to see numbers change and then wonder what it all means.

Hang in there!
Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Tue Jan 03, 2017 9:57 pm

Hi Mikeb

Happy New Year to you as well.

I appreciate your encouraging post. Previously in your June 24th post responding to my report of rising kappa light free light chain readings while on Kyprolis maintenance, you made the same point concerning the 30% criterion.

All I can say is that this has not been my experience. I relapsed both on Revlimid and Kyprolis, and in both cases, once the kappa free light chain levels began to rise, they continued to rise. There was no fluctuation, just a steady, increasing uptick. So I hope you are right in this case.

As for the free light chain ratio, I have read many times that this ratio is an important parameter. However, at least according to my oncologist, that isn't the case for kappa light chain myeloma when the lambda free light chain value is suppressed, as it is in my case. In those cases, myelo­suppression, caused by the treatment itself, causes the low lambda numbers and renders the ratio of no value as a measure of myeloma activity.

I will post my oncologist's response to my current readings after I next see him. I expect he will take a "wait and see" attitude with respect to the climb in my kappa free light chain levels, as he did when I began to experience small increases while on Kyprolis. If so, I hope he (and you) are right about the increase not being large enough to be significant.

But he turned out to be wrong about my Kyprolis relapse, which started in the same way.

Thanks again for your post.

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by TerryH on Tue Jan 03, 2017 11:14 pm

Hi MrP,

Thanks for posting your recent updates.

I'm leaning toward Mike's interpretation of your recent numbers, but I also can understand your concern given your past experiences.

One thing I would point out in favor of Mike's interpretation is that both your kappa AND lambda free light chain levels went up between your last two free light chain tests. This suggests that the myelosuppression from treatment may be lessening somewhat, causing both levels to go up, and the kappa-lambda ratio to go down.

Do you recall, however, what happened to your lambda levels and kappa-lambda ratios when you started to relapse in the past?

Best of luck with the treatment as it continues, and best wishes for a happy and much healthier New Year!

TerryH

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Wed Jan 04, 2017 12:18 am

Hi TerryH

Thank you for your post.

When I relapsed in the past, there did not appear to be any correlation between my kappa and lambda free light chain levels. In other words, while my kappa level would go up, my lambda level would sometimes go up, too. But the lambda level would also go down while my kappa level went up. Strange.

Still, I hope that you and Mike are right. Past experience does not make me optimistic, however.

I wish you the best for 2017 as well, TerryH.

MrPotatohead
Name: MrPotatohead
Who do you know with myeloma?: Me
When were you/they diagnosed?: March, 2015
Age at diagnosis: 65

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