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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 Wed Feb 01, 2017 10:00 pm

I wanted to post a quick update on my latest kappa free light chain numbers. I will have a full update on my latest CBC, Metabolic Panel, and Immunology Panel within a week or so, but wanted to report further evidence that mikeb and TerryH appear to be spot on (along with my oncologist) in their surmise that the latest slight uptick in my kappa free light chains while being treated with Darzalex and Kyprolis was a fluke.

The latest value for my kappa light chains is 1.5 mg/dL as of January 30th. The value on December 12th was 1.66 mg/dL, and it then climbed to 1.97 on December 27th, before dropping to 1.95 on January 16th, and, finally, to 1.5 on January 30th.

Thanks, guys!

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 K_Shash on Thu Feb 02, 2017 11:44 am

Thanks, Mr. P, for your updates and for sharing the good news.

Your posts will be a valuable insight for many of us, particularly for me, if and when we have to use this treatment.

I wish you many years of stable response with minimal side effects.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sat Feb 04, 2017 8:10 am

Many thanks indeed, K_Shash, for your encouraging remarks. With all the ups and downs I have experienced on this ride, it can be a real challenge to stay positive. But I believe that is the key to managing it, and posts like yours really help.

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 Dano on Wed Feb 08, 2017 11:32 am

Hello Mr. P.,

If you are considering a stem cell transplant, there are a few things you should be thinking about:

  1. The longer you are on drug treatment, the harder it becomes to harvest your stem cells.
  2. Going forward, you are now as 'healthy' as you will ever be and in the best condition to tolerate the rigors of a stem cell transplant.
  3. If you are on Medicare, they will only pay for one transplant prior to the age of 70.
  4. Talk to your myeloma specialist NOW about your candidacy for transplant so you and he are on the same page and you are not disappointed and have a better understanding of his treatment plan.
I had a stem cell transplant in October of 2014 at the age of 66. Unlike many patients, my transplant experience was very good. I had no diarrhea or mouth sores, and experienced very little nausea. Although I grafted very well, my transplant was a failure. Looking back and given the transplant option, I would do it all over again.

A final thought: Studies have shown that for the most part transplant patients have a longer time in progression-free survival (time to relapse); however, overall survival rates are almost equal to patients not getting transplant.

Good luck.

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by TerryH on Wed Feb 08, 2017 12:18 pm

Dano,

I'm not sure this statement in your post is really true:

"Studies have shown that for the most part transplant patients have a longer time in progression-free survival (time to relapse); however, overall survival rates are almost equal to patients not getting transplant. "

You're definitely right about differences in progression-free survival. It's the part about overall survival that I would question.

I say this because, first of all, there really aren't many, if any, studies designed to test "transplantation" versus "no transplantation" in newly diagnosed multiple myeloma patients. Almost always, it's "early transplantation" versus "delayed transplantation."

Second, there are studies -- mainly older studies -- showing that early transplantation does provide an overall survival benefit versus delayed transplantation. There is also a recent UK study that finds an overall survival benefit to transplantation at relapse in patients who already have had a transplant:

Cook, G, et al, "The effect of salvage autologous stem-cell transplantation on overall survival in patients with relapsed multiple myeloma (final results from BSBMT/UKMF Myeloma X Relapse [Intensive]): a randomised, open-label, phase 3 trial," Lancet Haematology, July 2016 (abstract)

Among myeloma specialists who question the need to always do an early transplant, the thinking is similar to what you express: That an early transplant may not provide an overall survival benefit versus a delayed transplant. But the important difference compared to what you wrote is that these specialists are comparing overall survival for early versus delayed transplants -- not transplants versus no transplants.

Sorry if this seems a bit nitpicky to you. I just wanted to clarify the issue since it is something that trips up a lot of people.

TerryH

Re: Darzalex and Kyprolis Treatment

by Dano on Wed Feb 08, 2017 1:31 pm

Hello Terry,

You are not nit picky at all, and thank you for making that correction. The study I was aware of was early versus late stem cell transplant, not transplant versus drug therapy only (no transplant). You are correct. I agree with you about the importance of accuracy in our Beacon posts, and I regret making this error.

Thank you.

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65

Re: Darzalex and Kyprolis Treatment

by TerryH on Wed Feb 08, 2017 2:17 pm

No problem, Dano. And thanks for the other points you made in your earlier post. They were worth bringing to the attention of MrP and everyone else.

Take care,
Terry

TerryH

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Feb 12, 2017 12:04 am

Hello everyone

Here are my latest labs from Feb 6, 2016:

Complete Blood Count

Test Result Ref Range
White blood cells 9.6 K/uL 3.8-10.8
Red blood cells 3.80 M/uL 4.41-6.00
Hemoglobin 12.6 g/dL 14.0-18.0
HCT 37.8 % 42.0-54.0
MCV 99.5 fl 80.0-99.0
MCH 33.2 pg 27.0-33.7
MCHC 33.3 gm/dL 32.0-37.0
RDW 12.9 % 11.5-14.5
Platelet Count 245 K/uL 150-450
MPV 10.8 fl 8.9-12.3
GRAN % 79.6 % 51-89
Lymph % 16.3 % 10-40
MONO % 3.8 % 4-14
EOS % 0.2 % 0-10
BASO % 0.1 % 0-3
Granulocyte Abs 7.7 K/uL 1.6-7.8
Lymphocyte Abs 1.6 K/uL 1.2-3.7
Monocyte Abs 0.4 K/uL 0.2-1.0
Eosinophil Abs 0.0 K/uL 0.0-0.7
Basophil Abs 0.0 K/uL 0.0-0.3

Metabolic Panel

Test Result Ref Range
Sodium 136 mmol/L 137-147
Potassium 4.0 mmol/L 3.5-5.1
Chloride 99 mmol/L 3.5-5.1
CO2 Total 28 mmol/L 24-32
Anion Gap 9 mmol/L 4-12
Glucose 119 mg/dL 70-100
BUN 38 mg/dL 5-24
Creatinine 1.2 mg/dL 0.8-1.3
BUN/Creatinine 32 Ratio 7-24
Osmolality-
calculated 282 mO/Kg 270-295
Total Protein 8.2 gm/dL 5.3-8.3
Albumin 3.2 gm/dL 3.4-5.0
Calcium 9.1 mg/dL 8.5-10.4
Bilirubin Total 0.4 mg/dL 0.1-1.5
ALK PHOS 48 U/L 45-117
SGOT (AST) 28 U/L 45-117
SGPT (ALT) 44 U/L 12-78

eGFR Non AFr Am: >=60 mL/min/1.73msq (>=60)
eGFR Afr Am >=60 mL/min/1.73 sq (>=60)


Immunological/Free Light Chains (January 30, 2017)

Immunological/Free Light Chains (Jan 30, 2017)

Kappa Free Light Chains 1.50 mg/dL 0.3300-1.94
Lambda Free Light Chains <0.0255 mg/dL 0.5700-2.63
Kappa/Lambda FLC Ratio >58.8 0.2600-1.65


One issue that concerned me was the results of my 24-hour urine test. I took this test as part of the screening process in preparation for a stem cell transplant, and it showed a very high protein value (555 mg/24 hours), where the reference range was 50-150. My other kidney markers (e.g., creatinine) are close to normal, so I wonder what the relative significance of this very high protein value could be.
Last edited by MrPotatohead on Sun Feb 12, 2017 1:25 am, edited 4 times in total.

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 JBarnes on Sun Feb 12, 2017 12:28 am

Appreciate your updates of your journey. After 4 years of minimal treatment post transplant, I've struggled with finding a treatment to control this disease. Looks like I'm headed to Darzalex soon. I'm also considering another transplant to deepen the response if I can get a response!

JBarnes
Name: Jerry Barnes
Who do you know with myeloma?: Self
When were you/they diagnosed?: Aug 17, 2012
Age at diagnosis: 54

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Feb 12, 2017 1:29 am

JBarnes,

Best of luck with Darzalex. I achieved very good results with it, and almost no side effects.

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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