[mrozdav]

MGUS & then smoldering diagnosis, have started treatment

by mrozdav on Tue Dec 09, 2014 6:43 pm

I, female, aged 69, was diagnosed with IgA kappa MGUS in February 2009 and then progressed to smoldering myeloma in August 2013. A year later I started treatment with Revlimid (25 mg) and low dose dexamethasone (40 mg once a week). By this time, it was found that I had t(4;14) and del (13) mutations based on a bone marrow biopsy (of which I have had four to date). The latest BMB found 1 plasma cell with the 1q+ and I do not yet know what the significance of this finding is.

At the time I started treatment at Johns Hopkins this past summer, I did not have CRAB symptoms, except that my hemoglobin had decreased to 10.9 from around 12.2 in 2009 and my IgA had increased from 1240 to around 3400. The total M spike was 2.13 g/dL (there are two spikes). It looked as if these last numbers were going in the wrong direction quite rapidly and that is why "close observation" was discarded for actual treatment.

I should add that I also enrolled in a clinical trial for MEDI-551, an antibody that attaches to CD19 on the surface of malignant plasma cells. I received three infusions of this drug and am now finished with this particular treatment. I do not know any results yet. Also, I receive monthly Zometa treatments.

I found this forum a few months ago and must say that it has helped me immensely. A lot of the information provided has clarified many issues for me and has helped me cope with side effects of the drugs (I have not had too many to date that have been too troublesome, thank goodness). One bit of information about dexamethasone was of particular help. After learning from others on the forum that they take the dex in the evening before going to sleep, I started doing that and the favorable change cannot be praised enough.)

Because I am identified by FISH as an intermediate (and now possibly high risk myeloma) patient, I have tried to get information about what this really means as far as treatment options go. Except for the clinical trial in which I participated, it seems to me that I am receiving conventional treatment which many standard risk patients get. One of the things that I noticed on the forum is that most of the time people do not indicate their risk status and do not always identify the kinds of mutations that their myeloma involves. Thus, when I read that someone is a survivor of seven or ten years, I am always glad, but I also wonder what their risk status was, what mutations they presented, if any. It obviously makes a difference according to what I have been reading. I have lots of questions to ask, but I wanted to write to express my thought that it would be most helpful not just to me but probably to many other high risk patients to receive this information about long time survivors and perhaps also to know more about their treatment regimens.

Finally, I should add that I am currently finishing my fifth cycle of treatment. The last round of testing indicated that my M spike had gone down to 0.25 g/dL, my IgA was at 316, the kappa /lambda ratio was 1.06 and no Bence-Jones in the urine. FISH did not indicate the percentage of plasma cells in the marrow and aspirate samples, but it is apparent that of the 98 cells under observation, about a third showed the mutations that I indicated above. At least, that is my guess because I have not yet received an explanation from my specialist at Hopkins.

Up ahead is resolution of the big question about whether or exactly when to get a stem cell transplant.

[mikeb]

Re: MGUS & then smoldering diagnosis, have started treatment

by mikeb on Wed Dec 10, 2014 12:41 pm

Hi Mrozdav,

Thanks for your post and the description of what you've been going through.

Our paths are kind of similar - I was originally diagnosed with MGUS, then smoldering a year later, and then symptomatic multiple myeloma 2 1/2 years after that. I, too, am participating in a clinical trial, and I have had a good response.

I'm glad to hear that your response has been so good, and that you have not had major problems with side effects. There is a lot of optimism around monoclonal antibody treatments like what you've received in your trial!

One place where we are different, though, is that I am considered "standard risk," with none of the higher risk abnormalities having been detected in my FISH testing.

Good luck with your decision about the stem cell transplant. As you probably know, there have been lots of good discussions in The Beacon about the pros and cons of SCTs and folks' personal experiences with them.

Keep us posted on how things go for you.

Mike

[NStewart]

Re: MGUS & then smoldering diagnosis, have started treatment

by NStewart on Thu Dec 11, 2014 1:06 pm

Mrozdav-

I understand you wanting to know what risk people are with their myeloma and what their mutations may be so that you can compare treatment regimens. For people who have lived many years with myeloma, they may not know. Genetic testing is relatively new and isn't done at all centers. So, the information may not be available. I am one of those people. I was diagnosed in 2008.

Nancy in Phila

[DexMed]

Re: MGUS & then smoldering diagnosis, have started treatment

by DexMed on Mon Jan 19, 2015 10:10 pm

mrozdav:

Found your post very educational. My condition is not very different:

1. Diagnosed in May 2010 - Smoldering, IgA kappa at age 62 (actually, symptoms were there 1 year previously). Luckily, smoldering for 5 years.
    
2. Recently, BMB jumped to 33% (was 12% in 2010), hemoglobin dropped to 8.9 (was 11 in 2010), IgA 2900 (was 1900 a year ago). Kappa / lambda ratio was always hi, recently 425 (should be below 2). Calcium now at 10.1.
    
3. No bone lesions and no fractures; just anemia, calcium, and very high K/L ratio Mspike 2.2.
    
4. FISH was done for the first time last week, now shows: 1q gain and 13q deletion, indicating intermediate risk based on the Mayo risk stratification. Mayo recommends: CyBorD (Cytoxan, Velcade, dexamethasone).

So, my oncologist is starting with Cytoxan (cyclophosphamide) (300 mg oral, weekly), Velcade (1.3 mg subQ, weekly) and dex 40mg four times a week (oral) for induction.

Since dex is 40 mg / 4 times a week, this sounds really high to me. This makes me quite scared.

Does anyone have experience with Induction therapy with dex starting 40 mg x 4 weekly for 2 cycles?

Any suggestions and experiences would be very welcome.

Thanks.

Last edited by DexMed on Wed Jan 21, 2015 2:26 pm, edited 1 time in total.

[mrozdav]

Re: MGUS & then smoldering diagnosis, have started treatment

by mrozdav on Tue Jan 20, 2015 7:08 am

Thank you for your note.

May I ask where you are being treated, i.e., is it at a cancer center or by an unaffiliated oncologist? Since I am not a physician, I do not feel comfortable advising you about the proposed dexamethasone dose; however, 40 mg four times a week seems rather high to me, too. I would seek a second opinion from a myeloma specialist.

My own specialist and the nurse assigned to deal with scheduling matters and routine issues that may arise during the course of treatment have indicated that most of their patients complain mostly about the effects of the dexamethasone. So, if you can deal effectively with the myeloma on a lower dex dosage, why not?

Until I started myeloma treatment, I avoided all medications, even Tylenol and aspirin. I regularly took a vitamin D pill, but that was it. As you can surmise, I have a bias against drugs and medications because I believe that good food and plenty of exercise should get one through life. Well, that is not exactly how things go, and I am definitely grateful for the anti-myeloma drugs that are available to me. Still, my attitude is that ,if less will do the job, then I should take less.

Bottom line advice, get a second opinion from a myeloma specialist who deals with these issues regularly and is up to date on all the latest research.

[Multibilly]

Re: MGUS & then smoldering diagnosis, have started treatment

by Multibilly on Tue Jan 20, 2015 10:00 am

Vince,

Taking 40 mg of dex 4-times-a-week is a quite high dose of dex, regardless of whether it is in conjunction with CyBordD (Cytoxan + Velcade + Dex) or not. In the case of dex, it has been shown that more is not always better and that the disease often times responds better to lower dose dex, not to mention the reduced toxicities in going with a lower dose.

This link will take take you to a download of a pdf that talks about Dr. Rajkumar's perspectives on this subject. See slide #28.

http://tinyurl.com/qyu7epv

I would second Mrodzav's recommendation to seek out a multiple myeloma specialist for a second opinion.

[DexMed]

Re: MGUS & then smoldering diagnosis, have started treatment

by DexMed on Wed Jan 21, 2015 2:10 am

Thanks MultiBilly and mRozDav for your detailed comments. I am, tentatively, scheduled to start treatment next week.

This regimen, I believe, is based upon this Mayo Clinic study:

CB Reeder et al, "Long-Term Survival With Cybord Induction Therapy In Newly Diagnosed Multiple Myeloma," ASH 2013 annual meeting, abstract #3192 (additional summary [PDF])

I have not contacted any specialist directly. But my oncologist is in contact with an MD Anderson specialist. I will try to investigate further before I start the regimen.

The exact scheduled dosage for 28-day cycles:

a. Cytoxan & Velcade (1,8,15,22); dex (1-4, 9-12, 17-20) Cycle 1,2
(So, dex 40 mg is for 12 days with breaks in two consecutive 28 day cycles.

b. Cytoxan & Velcade (1,8,15,22); dex (1,8,15,22) Cycle 3,4
(So, dex reduces to once weekly 40 mg after two cycles)

Could you please see the above references and let me know if I am interpreting correctly.

Also, is it possible to post an image in these posts?

Thanks so much for your help.

[Multibilly]

Re: MGUS & then smoldering diagnosis, have started treatment

by Multibilly on Wed Jan 21, 2015 9:43 am

Vince,

There are many possible dosing regimens for all the multiple myeloma cocktails, including CyBorD. Suggest you look at the four dosing regimens mentioned here for just CyBorD. Regimen #1 and #2 call for 40mg dex once a week (this is considered "low-dose" for dex). It would be a good discussion to have with your doc prior to beginning treatment.

http://hemonc.org/Multiple_myeloma#CyBorD.2C_VDC.2C_VDC-mod

You can also get a one-page pdf summary of one of the Mayo's CyBorD regimens (again, this one uses a low-dose dex approach) by going to this link:

https://myelomabeacon.org/docs/asco2014/8586.pdf

Note that there are times when a doc might suggest a higher-dose of dex for specific patients and circumstances.

[DexMed]

Re: MGUS & then smoldering diagnosis, have started treatment

by DexMed on Wed Jan 21, 2015 10:42 am

Multibilly,

I am so grateful for your latest post and the referenced articles (especially Slide # 28 of Dr Rajkumar's presentation).

I am definitely going to have further discussion with my oncologist before proceeding.

Since I am diabetic, currently being treated with oral medications and about to go on insulin due to the upcoming dex dosing, it is all the more important not to go with the high-dose dexa­metha­sone regimen.

This forum has been so helpful.

Thanks so much.