[kerrirunnergirl]

New multiple myeloma diagnosis, age 50

by kerrirunnergirl on Fri Aug 14, 2015 10:20 pm

My husband, 50 years old, was diagnosed with multiple myeloma on April 1st 2015. April Fools Day. We were hoping it was a joke.

He had a corpectomy of his 4th cervical vertebrae after it exploded per the neurosurgeon. We began Revlimid, Velcade, and dexamethasone (RVD) and are presently starting our 6th cycle. All I know is his light kappa chains were elevated. He has 15 lesions throughout his body. He has the "B" in the "CRAB" criteria, and we were told he is standard risk.

It has been a whirlwind. We went to the University of Michigan and they wanted us to do a clinical trial, which we declined. They suggested a stem cell transplant (SCT) upfront, which we de­clined. We would like to harvest and hold our stem cells, but the University of Michigan will not harvest and hold unless you participate in their clinical trial, so we could not continue treat­ment there.

Our insurance company, after asking for the last month about coverage for harvesting and holding, has still not given us an answer.

They did a bone marrow biopsy (BMB) but were unable to retrieve enough marrow to determine cytogenetics. They never suggested to try again, and now we are 5 rounds in and they said it will do no good.

We are going to Karmanos to see Dr. Jeff Zonder at the end of August to get a second opinion for maintenance and just to have another set of eyes for this disease.

My husband's free light chains went to normal after round 2 of treatment, but not sure that is a good sign long term.

I am so frustrated and feel as though I have to tell our oncologist what we should do. I am trying to educate myself, but I'm scared I will miss something.

I need to know that, if our insurance company will not cover harvesting, is it still possible to get stem cells later after maintenance for months or years.

We are overwhelmed and, now that we are nearing the end of our induction therapy, not sure what else to ask the doctor. Do we need another bone marrow biopsy? Should we get another CAT scan to see how the 15 lesions are doing, or if there are new ones?

This may or may not be true, but I feel that when we declined to do the trial and declined the stem cell transplant, we were put on the back burner.

Any input would be appreciated.

Kerri

[Multibilly]

Re: New multiple myeloma diagnosis, age 50

by Multibilly on Sat Aug 15, 2015 8:47 am

HI Kerrirunnergirl,

Sorry to hear about this situation. Be clear that I haven't been down this path since I am only smoldering, but here's my two cents:

1. It's great you are seeing Dr. Zonder soon. A second opinion is always a great idea at any stage of treatment.

2. I'm going to guess that Dr. Zonder will in fact suggest a new BMB at the end of the treatment cycle. It's important to understand that the BMB results are useful to help determine treatment response (it is used to evaluate the formal degree of a response to treatment) as well as to know where things stand with your husband's cytogenetics (which can help indicate which drugs will best suit your husband's condition). I guess I understand the current doc saying that a BMB in the middle of a current treatment cycle may not make sense, but I would be wanting to get one at the end of the treatment cycle.

3. I would think you would also want a PET/CT at the end of the treatment to see how the lesions have responded to the treatment. Imaging is not routinely done on every patient at the end of a treatment cycle, but given your husband's lytic lesions and spinal condition, I would think that a follow-up PET/CT would be clinically warranted (but I'm not a doc).

4. You say his free light chain level became normal, which is great. How has his M-spike been doing? The M-spike will be also be important to help characterize his response to the treatment. It's good to understand what all these figures were before and after the treatment.

You need to have trust and a good relationship with your doctors, feeling that they have all your best interests in mind. If you aren't getting that out of the U of M, I would suggest seeking out another doc like Dr. Zonder (who is quite active in research in the multiple myeloma community).

[Ron Harvot]

Re: New multiple myeloma diagnosis, age 50

by Ron Harvot on Mon Aug 17, 2015 3:23 pm

I am wondering if he is also on a biophosanate such as Aredia or Zometra. That is normally perscribed with patients who have active lesions. It hardens the bone, helps to prevent more lesions from forming and in some cases, will close the existing lesions.

ron

[kerrirunnergirl]

Re: New multiple myeloma diagnosis, age 50

by kerrirunnergirl on Mon Aug 17, 2015 7:43 pm

Multibully,

Thanks for your response.

His M peak is 0.0. Light kappa 0.81. Ratio 1.13.

His bone marrow biopsy (BMB) had 15 to 20 percent myeloma cells at diagnosis.

University of Michigan told us at stem cell consultation that, because he has had chemo, there would be no chance to obtain cytogenetics.. Our local oncologist who performed the BMB in the office apologized for not getting an adequate sample, but never suggested repeating the BMB, and I did not know enough at that time to realize the importance of cytogenetics in staging and choosing drug regimens along with prognostic indicators. I feel he should of done another one before treatment started, but I guess that's water under the bridge..

I am excited to see Dr Zonder as he has requested not only the reports but the actual slides of tumor and marrow. My only reservation is his philosophy regarding treatments and how aggressive one should be.. After much research, I see there is a wide spectrum of treatment options and philosophies. I'm not sure where he places on spectrum.

Our philosophy regarding treatment is evolving but, at this time, a wait and see is where we feel comfortable, but we are open to be redirected based solely on our individual lab values.

He is also on Zometa infusion once a month.

I will ask about repeat CT and or PET scan.

Thanks again for your response.. I have learned SO much from this site, the most important being that we are not alone. Smiling face with open mouth and smiling eyes.

Kerri