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

Re: My Darzalex journey

by Pepperink on Thu Jan 17, 2019 1:59 pm

Month 7: Darzalex infusion #19 (monthly)

For the first time, there is no bad news from my blood test. My white cell count dropped a lot (ex­pected) from the elevated state caused by Neupogen injections. All other good cell numbers moved up slightly. My kidney function improved, especially the eGFR number, which has been slightly below normal most of the last 18 months: From 60.4 last month to 66.8 [normal is >=60].

The best news is that all my “bad” myeloma numbers all moved down. My M-spike has slowly dropped each month since I began Darzalex infusions last June (2018), from 1.91 to 1.01 g/dL.

IgG: 1154 [657-1610] (Was 2173 last June)
Kappa free light chain level: 165.6 [3.3-19.4] (Was 569 last June)

Because of the impact it makes on my white cells, I’m continuing with a low dose of Revlimid (5 mg). I believe even at that level it greatly enhances the effectiveness of the Darzalex.

IgGChart2019.01.v2.png
IgGChart2019.01.v2.png (75.57 KiB) Viewed 1145 times

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

Re: My Darzalex journey

by Pepperink on Wed Feb 13, 2019 11:01 pm

Month 8: Darzalex Infusion #20 (monthly)

Another good blood test report. For the first time in at least three years I’m not anemic. my red blood cell count in the “normal” range: 4.26 M/uL [4.06-5.63]

As it has been most of the time, my absolute neutrophil count (ANC) is low: 1.1 K/uL [1.7-7.6]. My doctor feels that my overall health is very good and I have only been sick once in 19 months (a cold), so she is continuing with my Darzalex / Revlimid treatment. The Revlimid impacts my white cell count negatively, but it seems to be key to my improving numbers, even at the relatively low dose of 5 mg.

My “bad” numbers are all down again:

IgG: 928 [657-1610] (Was 1154 last month.)
Kappa free light chain level: 111.3 [3.3-19.4] (2as 165.6 last month.)
M-spike 0.61 g/dL (2as 1.04 two months ago)

Kidney, liver, and other organ functions are normal.

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

Re: My Darzalex journey

by Nanjeanne on Thu Feb 14, 2019 10:08 am

Congratulations on continuing good reports. Great news!

My husband has also had good results with Darzalex so far. He had his first relapse in November, with tanking numbers and pain and significant lesions, compression fracture, and much myeloma cells in his bone marrow. He had so much pain so suddenly and had difficulty walking. It came on suddenly and severely and took us by surprise.

He was started on Darzalex and 2 mg Pomalyst and had immediate response. His M-spike was 1.9 and kappa 3.13 mg/dL. He has kappa IgG. He had radiation on his hip area for 10 sessions as well. His bad numbers dropped immediately and continued to drop each treatment.

After his fourth biweekly infusion, his monthly tests came back no monoclonal antibody detected. His kappa is 0.18 and ratio is 0.23. We know this is just one month and we will see what happens after his next monthly tests, but this is huge news for us. We have never had no M-spike. Went in to stem cell transplant 0.3 and came out 0.2 in 2015. He stayed stable for a long time and then numbers slowly went up until they blew up suddenly. But this has been the best he has seen ever. His platelets are also holding good. His hemoglobin is slowly rising, his white count doesn’t get as low as it did after years of Revlimid, and he is in rehab getting stronger and walking better.

We hope these good results will continue and give us a long time in remission. In fact, we leave in April for 7 days in Rome to celebrate.

May you continue your good response as well!

Nanjeanne
Name: Nanjeanne
Who do you know with myeloma?: My Husband
When were you/they diagnosed?: April 2014
Age at diagnosis: 66

Re: My Darzalex journey

by Cheryl G on Thu Feb 14, 2019 5:12 pm

Hi Pepperink,

Thanks for the update. It's great to see that your M-spike is continuing to drop. I find it interesting that your M-spike is still dropping measurably from month to month even after 7 or 8 months of treatment. I thought responses typically occurred more quickly, particularly in someone such as yourself, who hasn't had many prior treatments.

I hope your labs continue to improve and that the response persists for a really, really long time!

Cheryl G

Re: My Darzalex journey

by Pepperink on Fri Feb 15, 2019 2:36 pm

Cheryl,

Thanks for the comments.

My oncologist said this week that my myeloma is "resistant" to treatment. The first year after diag­nosis (before Darzalex) was a series of starts and stops due to low white count and a reaction to Revlimid.

She says the Darzalex wasn't doing much until she added Revlimid at a low dose (5 mg), which I am tolerating well.

So even though my numbers have been dropping gradually, I'm starting to win the tortoise / hare race!

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

Re: My Darzalex journey

by Ron Harvot on Fri Feb 15, 2019 5:22 pm

In the literature it appears that Darzalex works better in combination with dexamethasone and either Revlimid or Velcade or both. It appears that Darzalex often enables Velcade to be effective even if the patient built a resistance to Velcade alone, a synergistic benefit that is not easy to explain. So you might ask your oncologist of his thoughts on adding in Velcade to the mix or sub­stituting Velcade for the Revlimid if the side effects of the Revlimid are too much. Pomalyst is also an option, as it is similar to Revlimid, but may cause the same side effects that are bother­ing you.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: My Darzalex journey

by Nancy Shamanna on Sat Feb 16, 2019 9:30 am

Hello Pepperink,

In the article from 'Hematologist' , a publication of ASH, the authors say that evidence has shown Darzalex to work better in combination with an IMID (eg. Revlimid) or a proteasome inhibitor (eg. bortezomib), than by itself (all taken with dex).

It sounds like you are on the right track to be taking Revlimid also. I am not a doctor though, so just learn from reading and from going to talks about myeloma!

http://www.hematology.org/Thehematologist/Diffusion/6753.aspx

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: My Darzalex journey

by Pepperink on Sat Feb 16, 2019 1:34 pm

Nancy and Ron,

Thanks for the comments!

My first year of treatment was very erratic due to my chronically low white cell count, specifically neutrophils. Velcade was a central part of the regimen, but it drove my white count down and had to be stopped many times.

I was convinced that I would be lucky to have two good years before health problems would signal a downhill slide.

But I never doubted that my doctor was doing exactly the right things based on my layman's research into my situation. Having total trust in the doctor is so important.

And now my situation has improved dramatically, since starting Darzalex treatment, which includes Revlimid and dexamethasone. My doctor is even talking about possible remission by the end of summer and maybe a stem cell transplant!

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

Re: My Darzalex journey

by Cheryl G on Tue Feb 19, 2019 11:33 am

I am surprised at the posts in this thread that make it sound like it is some sort of super special secret, or astounding discovery, that adding a known myeloma therapy such as Revlimid and Velcade to Darzalex and dexamethasone will improve responses and lengthen times in remission.

You can almost always deepen the response of a myeloma treatment regimen by adding one or more known myeloma therapies. This is especially true with myeloma patients who have not received many prior therapies, and it's especially true when you add therapies from different drug classes.

So, if you want to improve response rates for the combination of Pomalyst and dexamethasone, for example, add Kyprolis, Darzalex, Empliciti, or cyclophosphamide (just as a few examples).

If you want to improve the response rate of Velcade and dexamethasone, as another example, add Revlimid or Darzalex or cyclophosphamide or even doxorubicin.

The two main reasons most doctors don't recommend five-, six-, or seven-drug treatment regimens are:

1. The side effects become a problem with so many drugs being given to the patient.
2. It is not clear that the deeper responses up front with more intensive therapy lead to longer OVERALL survival.

The deeper responses associated with intensive multidrug therapies almost always lead to longer times in remission, measured as progression-free survival. What is not yet known is how many of those more intensive therapies lead to longer overall survival. It has happened in one or two studies (I'm thinking particularly of the SWOG S0777 study comparing Revlimid, Velcade, and dexamethasone to just Revlimid and dexamethasone, which is the reason that RVD has become so common an initial treatment for myeloma in the U.S.), but it is not an extensively documented outcome.

Cheryl G

Re: My Darzalex journey

by Pepperink on Wed Mar 13, 2019 7:14 pm

Month 8: Darzalex Infusion #21 (monthly)

The good news continues to get better. My oncologist is expecting me to achieve remission in the next two or three months.

For the first year, I could not stay on treatment due to Revlimid intolerance and very low white cell counts. The Darzalex moved my numbers in the right direction, but too slowly. It really began working when I was able to add a 5 mg dose of Revlimid without a reaction.

Here are my “bad” numbers:

IgG: 659 (3664 at diagnosis)
Kappa free light chain level: 43 (1186 at diagnosis)
M-spike: 0.4 g/dL (2.94 at diagnosis)

And (tada!), for the first time, my free kappa-lambda ratio can be calculated (it has always been “greater than 30”):

Kappa-lambda ratio: 8.43

My red count is still creeping up above the anemic level and white cells are improving, although still low.

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

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