[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Jun 11, 2017 6:29 am

Hello everyone,

I completed my Kyprolis, Darzalex, and dexa­metha­sone treatment regimen on March 15, 2017, and decided to follow up with an autologous stem cell transplant, on the advice of my oncologist. This decision about the transplant followed two years of indeciseness concerning whether to go forward with a transplant or not.

When I began my multiple myeloma journey in March, 2015, my oncologist was inclined to treat me with a combination of novel agents and chemotherapy and avoid the transplant. However, my experience since then indicated that my myeloma was resistant to several of the best novel agents. Either it did not respond to them, or else the response was quite short-lived. This, despite the fact that my cytogenetics as revealed by FISH, were not consistent with aggressive disease.

My best result obtained on a treatment regimen came from Kyprolis and Darzalex (with dexamethasone) which I have been tracking on this thread. So I thought it made sense to wrap up my Kyprolis and Darzalex account for the benefit of anyone who might be interested.

The tables below summarize my experience in terms of the various blood markers used to track my progress, and I hope it may prove useful to those contemplating the same drug combination.

To summarize, my multiple myeloma did respond initially to Kyprolis and dexamethasone. This began to falter after several months, but was boosted thereafter through the addition of Darzalex.

The side effects I suffered on Kyprolis and Darzalex included some myelosuppression as measured by labs, and increases in fatigue as experienced clinically. Because I have a heart condition and Kyprolis can affect the heart, I had quarterly echocardiograms. None of these, fortunately, disclosed any adverse impact on my heart function. I did experience infusion reactions on Darzalex, but these were limited to spikes in my blood pressure, and disappeared after my first three infusions.

One interesting observation is that when I discontinued treatment in preparation for my autologous transplant, my hemoglobin began to climb toward its normal range, indicating that my treatment, rather than my myeloma, was likely the culprit in its suppression.

I wish everyone the best of luck in your myeloma journey, and I am happy to answer any questions you might have concerning my experience with Kyprolis, Darzalex, and dexamethasone.

Year 2016 2016 2016 2017 2017 2017 Reference
Month Nov Dec Dec Jan Jan Feb Range
Date 15 12 27 16 30 6

Complete Blood Count

WBC 4.2 - 8.3 6.8 - 9.6 3.8-10.8 K/uL
RBC 3.3 - 3.6 3.41 - 3.80 4.41-6.0 M/uL
Hemoglobin 10.8 - 11.8 11.2 - 12.6 14.0-18.0 g/dL
Platelet count 394 - 255 203 - 245 150-450 K/uL
Granulocyte % 40 - 56.3 49.5 - 79.6 51-89 %
Lymphocyte % 38.9 - 24.2 37.4 - 16.3 10-40 %
Monocyte % 17.5 - 9.9 11.2 - 3.8 4-14 %

Metabolic Panel

Sodium 139 - 136 140 - 136 137-147 mmol/L
Potassium 3.5 - 3.8 4.9 - 4 3.5-5.1 mmol/L
Glucose 146 - 119 96 - 119 70-100 mg/dL
BUN 33 - 24 30 - 38 5-24 mg/dL
Creatinine 1.6 - 1.1 1.1 - 1.2 0.8-1.3 mg/dL
BUN/Creatinine 21 - 22 27 - 32 7-24
Total protein 7.8 - 7.4 7.1 - 8.2 5.3-8.3 g/dL
Albumin 2.8 - 3.3 3 - 3.2 3.4-5.0 g/dL
Calcium 9.5 - 9 9.2 - 9.1 8.5-10.4 mg/dL
Bilirubin 0.3 - 0.5 0.3 - 0.4 0.1-1.5 mg/dL
Alkal. phosph. 54 - 59 46 - 48 45-117 U/L

Serum FLC

Kappa 11.3 1.66 - 1.95 1.5 - 0.33-1.90 mg/dL
Lambda 0.152 0.0336 - <0.0255 <0.0255 - 0.57-2.60 mg/dL
Kappa/lambda 74.3 49.4 - >76.5 >58.8 - 0.26-1.60


Year 2016 2017 2017 2017 2017 2017 2017 Reference
Month Feb Feb Mar Mar Mar Apr May Range
Date 21 22 6 13 27 28 22

Complete Blood Count

WBC - 7.6 - 8.4 5.7 5.7 - 3.8-10.8 K/uL
RBC - 3.52 - 3.44 4.19 2.38 - 4.41-6.0 M/uL
Hemoglobin - 11.2 - 10.8 13.3 7.5 - 14.0-18.0 g/dL
Platelet count - 187 - 235 270 74 - 150-450 K/uL
Granulocyte % - 66.8 - 75 N.A. N.A. - 51-89 %
Lymphocyte % - 25.8 - 19.3 26 16 - 10-40 %
Monocyte % - 6.1 - 5.1 5 12 - 4-14 %

Metabolic Panel

Sodium - 139 - 139 139 - 137-147 mmol/L
Potassium - 3.6 - 3.8 4.3 - 3.5-5.1 mmol/L
Glucose - 132 - 105 106 116 - 70-100 mg/dL
BUN - 22 - 27 24 5 - 5-24 mg/dL
Creatinine - 1.3 - 1.3 0.98 0.74 - 0.8-1.3 mg/dL
BUN/Creatinine - 17 - 21 24.5 6.75 - 7-24
Total protein - 7.1 - 7.4 7.4 4.8 - 5.3-8.3 g/dL
Albumin - 3.1 - 3.1 4 2.8 - 3.4-5.0 g/dL
Calcium - 9.5 - 9.4 9.1 7.3 - 8.5-10.4 mg/dL
Bilirubin - 0.4 - 0.4 0.44 <0.2 - 0.1-1.5 mg/dL
Alkal. phosph. - 52 - 46 55 58 - 45-117 U/L

Serum FLC

Kappa 1.98 2.11 2.01 - - - <0.032 0.33-1.90 mg/dL
Lambda 0.63 0.181 0.0327 - - - <0.0255 0.57-2.60 mg/dL
Kappa/lambda 3.14 11.7 61.5 - - - ** 0.26-1.60

Notes:

Free light chain results from February 21, 2017 are from a different laboratory than the results for other dates.

N.A. = not available (was not measured).

** A reliable kappa-lambda free light chain ratio could not be calculated for the May 22, 2017 results due to very low kappa and lambda levels.

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Moderator's note: Other forum threads related to Darzalex (daratumumab) can be found by following this link. Similar links for discussions about other specific myeloma therapies can be found in the "Useful links to existing forum discussions" topic pinned to the top of the "Treatments & Side Effects" section of the forum.

[K_Shash]

Re: Darzalex and Kyprolis Treatment

by K_Shash on Mon Jun 12, 2017 4:05 pm

Hello Mr. Potatohead.

Thanks for posting your detailed progress with this (Drazalex and Kyprolis) treatment.

I am sure I am not the only one who reads your posts closely. I was quite concerned when you wrote the following on May 27:

After going back and forth on the decision, I finally decided to go ahead with an autologous stem cell transplant for my multiple myeloma, after my response on Kyprolis and Darzalex began to falter.

The procedure went smoothly, but it was definitely very unpleasant.

Now, two weeks afterward, my blood counts are coming back, but I have tremendous fatigue and my already intense bone pain has considerably worsened. It's still early in my recovery, but based on my results so far, I feel that it was a bad mistake to have the procedure.

I don't really have many drug options left, so I am thinking of just stopping treatment if my symptoms don't improve.

I am not quite clear about what exactly happened to indicate that your response to the Darzalex-Kyprolis began to falter. This is the treatment I would try if and when my current Revlimid maintenance starts to be ineffective. Hence my personal interest in knowing the details of your experience.

All the best and I hope your recovery from the stem cell transplant is going well and that the transplant turns out to be beneficial to you. It seems that you are feeling a lot better than when you wrote the May 27 post.

[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Thu Jun 15, 2017 11:29 pm

Hi K_Shash

After a dramatic response to Kyprolis and Darzalex, marked by a rapid decrease in my kappa free light chain level, my myeloma stayed under control for months. But, as was the case with every other treatment I have tried, my kappa level eventually began climbing again.

It was then that my oncologist decided to change his position on treatment and began talking to me about undergoing an autologous stem cell transplant. And I agreed to it (after an extended period of indecisiveness.)

However, don't interpret my experience as typical. My pattern seems to be an initial response, followed by a rebound by the myeloma. Many people have much longer responses to Kyprolis and/or Darzalex. So if you are considering Kyprolis and/or Darzalex,I think you stand an excellent chance of doing quite well for an extended period of time.

I do feel somewhat better now. Thanks for noting that, and best of luck to you!