M-Spike, High Kappa and Kappa/Lambda Ratio

Hi there. Your lab results are surprisingly similar to what mine were with the exception of the high IgA. I had a high IgM along with the kappa/lambda ratio issues. I was eventually diagnosed with a blood cancer called Waldenstrom's Macroglobulimenia (aka: lymphoplasmacytic lymphoma). I just finished chemotherapy and I am now on Rituxan to suppress my immune system, I have an auto-immune neuropathy along with my cancer. A bone marrow biopsy, along with clinical symptoms, will help your team give you a diagnosis.

I know that telling you not to worry is pointless right now, but take it from someone who has been there and is still in it, worry only makes things worse. I am convinced that worry, anxiety, and chronic stress played a role in my health issues. All the worry in the world won't change the outcome, it will only rob you of today's joy. Hugs to you.

Most likely, all you need to do is ask your Primary Care Doctor or Oncologist to send a letter to your Insurance dept. stating that you will need to get a 2nd Opinion for your care, and that will be at Mayo Hospital in Rochester, MN.
The Insurance Co. have to send you for a second opinion per law. Now if you have to stay in your own State of New York for the opinion, I’m not sure but if they don’t have Qualified Doctors to treat you in New York then they have to send you to MN!

I’m a retired Nurse at huge Hospital in CA. Also sick with MGUS for years and having M-spikes in Kappa free light chains for last year again. Going back to my Oncologist next week to find out what’s going on? Haven’t been feeling well. So I know what your going thru. Have had MGUS for 20 years now.
I’ve had several Bone Marrow Biopsies. They will give you a numbing gel around area before they go in with the needle, and then it is a little painful but it’s not something that needs to be done in the hospital where you need to be put under.
You should be fine! Just try to relax. Take deep breaths and meditate.
If you have any other questions I’m here to answer them if I can.
I’ve been to the Mayo Hospital/Clinic in MN about 8 years ago for a 2nd opinion. Best choice I’ve made! They were so thorough and completed all my tests, labs, X-rays, CT Scans, EMG’s . Everything done in 3 days. The Doctor was so professional and highly regarded as the best in their field!

@kappaking I’m just checking in to see if your FISH results are in and you are satisfied with your game plan.
How are you feeling about things as they stand?

I appreciate you checking in on me.

No, the results of the FISH analysis and the cytogenetic analysis haven't come back yet, and I'm getting a little frustrated about it. I emailed New York Presbyterian hospital that's doing the analysis yesterday to inquire about it. They sent back a response, only saying that when the analysis is completed, the results will be available to me on the patient web portal.

I think my current hema-onco is pretty close on issuing a diagnosis, after which he'll advise me to be treated by a MM specialist that he recommended at the Mount Sinai Center of Excellence for Multiple Myeloma. My current hema-onco told me that he's been in consultation with this MM specialist regarding my case. I think my current hema-onco just wants to see an established trend in my labs before coming to a final diagnosis and also waiting for the cytogenetic and FISH results to determine my risk profile. While I think I understand the seeming delay in getting to a diagnosis, it's frustrating waiting for it. I'm going to be seeing my hema-onco on May 8th and will gently press him on why he hasn't issued a diagnosis yet.

I think I'm on the cusp of active MM, but not quite there yet. They're watching me closely. My current hema-onco and the MM specialist seem to want to hold off on treatment for as long as possible. I assume they want to hold off treatment because I'm feeling pretty great at the moment - I've never had any symptoms, and have no CRAB markers - and the labs don't quite point to active MM (yet). But, again, I'll be pressing him on the 8th on why he's not recommending treatment now, even if I'm smoldering, to try to prevent it from becoming active.

Once I receive the diagnosis, I fully intend to get a second opinion at Memorial Sloan Kettering. But Sloan Kettering doesn't even want to talk to me about a second opinion without first getting the diagnosis and labs from my current hema-onco.

I'm fairly confident that I'm in great hands, and WILL be in great hands in the future with the MM specialist at Mount Sinai. The waiting, though, is frustrating.

@kappaking
Waiting patiently is not my superpower. I hope your patience is rewarded with good news.
I’m so glad you are looking ahead and have a strategy. Planning is much more my forte.
Thanks for your response.

I understand how you feel. I'm in the same place....SCARED. I hope that when you see your hematologist, they can give you some good information. I see mine on Monday and hope to get a better explanation of what's going on.

@sandy4053
Fingers crossed that you have a productive visit And are reassured after talking to your oncologist/hematologist. It is scary, I agree. Try to keep in mind that the statistics are on your side.
I hope you feel comfortable sharing the results of your appointment.

Because of my recently-diagnosed osteoporosis, my current hema-onco wants to give me either a shot of Xgeva or an infusion of Zometa at my next office visit. I had seen the bone density results indicating osteoporosis, so I just accepted my doctor's recommendation. I'm wondering now if I should have gotten another opinion about getting this Xgeva or Zometa. I'm still in time to cancel the appointment with my doctor, but is getting a second opinion really worth it in this matter? Is it possible that a second set of eyes on the same bone density report would end up calling into question the interpretation of the previous doctor? Would a second-opinion-doctor require another bone density test at a different facility? I had been under the impression that a bone-density test is pretty cut and dried - either I'm above, at, or below some existing benchmark. If I'm below the benchmark by X amount, I have osteoporosis, where X is an industry standard benchmark.

Hi:
I wouldn’t think you’d need a second one but you need a copy of it to share with a different doctor. They should be able to do that for you.
I have osteoporosis which the dexascan score on my first one led me down the path to learning I have MGUS. My doctors don’t think it is related to the MGUS but I’m not sure I agree with that.
Anyway I really struggled with the decision of medication to treat it- and got a couple of compression fractures while debating it! ( went snow skiing which I have given up now)
I think the bisphosphonate IV will be what they give you. It’s zolendronate in US and zometa in Europe I think. Don’t know what Xgeva is.
Are you debating which drug?
Or whether or not to take anything?
I was annoying and asked tons of questions but got more answers from the NP than the MD.

No, I'm not debating which drug, but whether I actually need a drug like Xgeva / Zometa at all, or if simple over-the-counter calcium and vitamin D3 supplements would be enough. I understand that with Xgeva and Zometa, there can be some serious, albeit rare, side effects.