[JenM]

No malignant plasma cells after induction - how common?

by JenM on Fri Jan 23, 2015 2:21 pm

Hi everyone. I've been stalking these forums for the past few months but have never posted. But today I got some test results and needed to understand if they are as good as I think they are!

I am 42 years old and was diagnosed October 23, 2014 with multiple myeloma. The story is a little crazy to us, but perhaps not to all of you. I had an eye infection and went to the ER when it didn't seem to be getting better, despite antibiotic drops. In the eight days that followed, a wonderful team of doctors and nurses pieced together a really low iron count and excruciatingly HIGH (and rapidly climbing) calcium levels in my blood.

Three days after checking in for a bum eye, I suddenly was on a respirator, had pneumonia, was on dialysis (twice), under sedation for several days and ultimately diagnosed with multiple myeloma, My husband immediately identified who we are told is the top doctor in our area for this (Dr. Roger Strair, who is the Chief of Hematologic Malignancies & Hematopoietic Stem Cell Transplantation at Robert Wood Johnson Hospital and the Cancer Institute of New Jersey).

I was in the hospital for a total of two weeks and finally came home to my husband and three young kids on Halloween. It was a tough few weeks for sure, recovering more from the hospital stay and then the cancer diagnosis. I started chemo immediately, taking Velcade, cyclophosphamide and dex. I have been incredibly lucky - I have virtually no bad side effects from the chemo. The worst was initial sleeplessness from the dex and a funky taste in my mouth for a few days following treatment.

My initial treatment plan called for four months of this chemo regimen and then we would stop and assess readiness for ASCT. At diagnosis, I had 75%+ malignant plasma cells and abnormal cytogenetics (not sure of the specifics - I don't have the report yet; will get it next week). I have been responding very well to the chemo and my levels are dropping as they should.

At first visit Nov 4, 2014
 
IgG 2990 mg/dL
IgA 8.1 mg/dL
IgM 20 mg/dL
Kappa FLC 4.46 mg/dL
Lamba FLC 0.032 mg/dL
K/L ratio 139
Gamma globulin 2.4 g/dL
 
(Gamma globulin was 2.75 at diagnosis)

After 3rd round of chemo

IgG 1060 mg/dL
IgA 25.3 mg/dL
IgM 24 mg/dL
Kappa FLC 0.1740 mg/dL
Lamba FLC 0.1170 mg/dL
K/L Ratio 1.49
Gamma Globulin 0.87 g/dl

More importantly, I had another bone marrow biopsy done on January 15, 2015 and there is no sign of malignant plasma cells! Zero presence. And my cytogenetics are normal. We will meet with the oncologist to get the full report and details on Tuesday but, in the meantime, we are THRILLED. The doctor did tell me that this doesn't change the plan - that we will still proceed with the ASCT, but this puts me in the best possible position to do it.

Has this happened to anyone else? This is beyond what I would have even been bold enough to wish for. I would love to hear anyone with similar experiences.

PS - As I saidm I am new to posting on this board so there is probably information I didn't include because I don't know I should. Be patient with me please

[Multibilly]

Re: No malignant plasma cells after induction - how common?

by Multibilly on Fri Jan 23, 2015 4:14 pm

Hi JenM,

Welcome to the forum! Sounds like you've had a scary time over the past few months. That's really great you are responding so well to this drug cocktail (which is often referred to as CyBorD).

Your doc is right in that you aren't out of the woods just because you had such a great initial response after just a few rounds of chemo (which definitely happens with a fair amount of newly diagnosed patients). The trick is to keep your good response at a reasonable level or as close to strict complete response as long as you can (there are different philosophies on what one ought to aim for and just how far one should go to achieve that goal). The big choice before you is whether you will want to initially achieve one of these goals via a transplant (now or later when you have replased) or via a completely drug-only approach. Take the time and do your research on what makes best sense for you. It's a big decision, so you might want to consider a second opinion.

In addition to the numbers you already provided, you may want to also track your M-Spike (aka monoclonal protein, M-protein, paraprotein). You can find this on the lab test called the Serum Protein Electrophoresis (SPEP).

Again, I'm happy for you having such a great response after such a shocking start only 2-3 months ago.

Last edited by Multibilly on Fri Jan 23, 2015 9:58 pm, edited 2 times in total.

[DallasGG]

Re: No malignant plasma cells after induction - how common?

by DallasGG on Fri Jan 23, 2015 7:57 pm

I had a similar experience. When diagnosed in June 2013, I had 80% malignant plasma cells in my bone marrow. I went through 5 cycles of VRD [Velcade, Revlimid, and dex] and then about 6 months after diagnosis I had another bone marrow biopsy and it came back with 0% malignant plasma cells.

I will be having another bone marrow biopsy in a couple of weeks, so it will be interesting to see what those results are.

Even though the induction treatment worked very well for me, I still had an auto SCT in February 2014.

[K_Shash]

Re: No malignant plasma cells after induction - how common?

by K_Shash on Fri Jan 23, 2015 9:00 pm

Hello JenM,

Welcome to this discussion. I am very sorry to see someone so young getting afflicted with this disease. I am very glad you have made such wonderful progress. I was diagnosed on the day before Thanksgiving and am now in the fifth week of my RVD induction treatment.

My case is quite different in that I will be 68 in April. I have therefore stated my views and dilemma in my recent topic, "Stem cell harvest at 68 & transplant at 75 - why bother?"

Also, I did achieve a 88.5% drop in my kappa free light chains (FLCs) in less than 4 weeks and, since then, I have had the urine test showing that all the (gamma globulin) protein leaking into the urine is already down in the safe band. I hope to achieve a sCR by the end of the third month, too. I believe both of us are 'standard risk' patients and have no problem tolerating the chemo drugs and have no problems in the cytogenetics. And both of us are responding well to the induction chemo.

There is a lot of discussion on PeggyB's 'must read' thread, "How did you decide whether to have a SCT or not?"

I have decided against an early ASCT for me. At MY age, I am debating whether it is even worth harvesting my stem cells and storing them for future transplant(s). Half the 'experts' think everyone should have an ASCT ASAP. Then there are a lot of other experts concluding that there is no real merit to an early ASCT, and then there is another, smaller, set of experts who think that the multiple myeloma can be well managed only with chemo. Two things to consider, and I hope I did not misread these opinions: There will be a relapse in 3 to 5 years after an ASCT, and apparently an ASCT does not increase the patient's survival rate.

I have come across conflicting opinions from my own oncology team. I am of the opinion that an 'informed multple myeloma patient has to make her/his own decision'; after a thorough analysis and after studying the various 'opinions'.

I have a different approach to MY own case at 68, taking into account the quality of life, dangers of ASCT and the ASCT ordeal that may take 3 -6 months of my most enjoyable years. However, at your young age, you would be well advised to at least harvest and store your stem cells for future ASCT's.

A lot of promising research is going on in all the aspects of the myeloma treatment, from simplifying the mechanics of ASCT to developing breakthrough drugs (almost a dozen are in various phases of clinical trials), both for ASCT procedures and for the myeloma treatment. In your case, with a long '17+ year shelf life' of the stem cells you should certainly benefit from these stem cells harvested early on.

Best of luck with a long term stringent complete remission and hope all of us see a cure soon.

K_Shash

[Mister Dana]

Re: No malignant plasma cells after induction - how common?

by Mister Dana on Sat Jan 24, 2015 3:06 pm

JenM

Like you, I had a fast complete response to CyBorD. I started it in January 2014 with the plan of taking it five months and proceeding to auto SCT. I have nonsecretory multiple myeloma and the docs couldn't monitor my progress with blood tests. So, at the half way point in late March, I repeated the PET/CT scan and bone marrow biopsy. The results were fabulous, the opposite of what they had been in December.

I ended up staying with the plan for the full term, took a few weeks off, and went ahead with SCT. While I was away doing that, I wrote up both stories and put them in these forums. Here are the links:

"Nonsecretory multiple myeloma & other novel things," forum disc. started Jul 17, 2014

"Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)," forum disc. started July 26, 2014

The good luck I had last spring continued into the summer, and I hope your good luck will continue, too.

Dana

[gardengirl]

Re: No malignant plasma cells after induction - how common?

by gardengirl on Sun Jan 25, 2015 1:00 pm

Hi JenM! So glad you have had a great response! As others have said, what to do next should be decided after lots and lots of research. I've done 3 cycles of CyBorD so far and still don't know what to do next. But the one thing I wanted to point out that I have learned is that the cytogenetics are tested on myeloma cells; so if you have no myeloma cells, cytogenetics will read normal. Best wishes to you! (Snow coming your way!!!)

[NStewart]

Re: No malignant plasma cells after induction - how common?

by NStewart on Sun Jan 25, 2015 1:11 pm

JenM-

You've had a wonderful response to treatment so far after such a traumatic introduction to the myeloma world. Now is the time to make the decision as to whether to do an ASCT now, or not.

MultiBilly makes a very good point about maybe this being a good time to get a second opinion. Since you are in New Jersey, you have some very good options of places to seek one that aren't too far away. The John Theurer Cancer Center in Hackensack, Sloan-Kettering in New York City (NYC), Mt. Sinai in NYC, Columbia in NYC, and Abramson Cancer Center at Penn in Philadelphia. All of them have excellent myeloma programs with lots of research going on. I, too, suggest that you get another opinion.

My decision to do a transplant was based on a couple of things. One, I still had an M-spike of 0.5 g/dl (5 g/l) after 8 rounds of Revlimid and dex, and, two, I wanted to be able to go drug free for a time if the transplant was successful. Although I didn't reach an M-spike of 0 for 7 months post transplant, I was drug free for almost 3 years. This was a blessing for me.

After a relapse, I have been managed successfully with Revlimid and dex for 2 more years with the same M-spike that I had when I went into the transplant 5 years ago this week.

Would I have done as well over the 5 years staying on Revlimid and Dex? Who knows. I am comfortable with the decisions that I made and don't regret having done the transplant. But, is it right for you? Only you will be able to make that decision. Once you do make a decision, don't look back and try to second guess yourself. Look at the research, your goals one way or the other, and the needs of you and your family. Whatever you decide, it is wise to harvest your stem cells now just in case you do decide to do a transplant either now or later.

Nancy in Phila