Blood Test: Numbers are up, will doctor not start me on treatment?

Question: since my numbers are way above the norm and clearly going up, why - in your opinion and/or experience - would the doctor not start me on some kind of treatment right away instead of waiting to tick off all the marks on the myeloma checklist before starting treatment?

@kappaking
One of the challenges of the patient portal is having raw data without explanation as to what this means. You can call your doc and ask for a telephone conversation about lab results if it is going to be some time before your next appointment. When is your appointment and are you okay to wait?

I was just hoping to get some opinions before my appointment with him on Tuesday. I'm anxious, but I suppose I can wait until then.

@kappaking Starting treatment may need to be coordinated with other health concerns. My experience is this, and remember yours may be different. I am also an end stage renal patient, and started dialysis Sept 2022. I have been on treatment for multiple myeloma since Aug 2021. My oncologist and nephrologist coordinated my care. Basically he told me "once you start treatment, you're on it for a long time." I was diagnosed with mm in 2019. We held off starting treatment as long as we could. One of the things is managing the side effects of the treatment medications, which can be a big challenge in itself! Those side effects can vary from person to person, but in my situation, it has not been pleasant.

As @pmm mentioned, you have raw data, and try not to get frustrated as you await your doctor's consultation. Know we are here for you!
Ginger

Just a comment from my experience. I started shots for Stage 1 Multiple Myeloma immediately and had absolutely no side effects. Responded to shots very well and was told I will have many years. Keep a positive attitude. No alcohol and exercise to stay strong. Best success. I won't be writing again for at least a month.

@kappaking
Yes, get in your Zen place until Tuesday. We are all so different, with coexisting diagnoses that interpreting lab results is best left for your Tuesday appointment. There are many here who can give support once you have a game plan with your physician.
As Ginger says, sometimes the best plan is to wait as long as possible. Other times there is benefit to treatment as soon as possible. We can’t really know. I remember that first appointment after my initial labs. I was so anxious I’m surprised I remembered my date of birth. I’ve learned to jot down questions.
Do you have your questions formulated for Tuesday? Will your spouse accompany you?

Yes, thankfully my wife will be with me at the appointment. Working on those questions now. Thanks.

Do you have a myeloma specialist to advise you and your hematologist? Hematologists treat lots of blood disorders. A myeloma specialist treats mostly myeloma, MGUS, and SMM.

I don't think the hematologist that I'm currently seeing is specifically a myeloma specialist, and it's something that remains a concern for me. I started seeing a new primary care physician/internist from whom I sought a recommendation for, specifically, a myeloma specialist. Unfortunately, she appeared to be somewhat clueless. But I've been doing a bunch of reading, and my region isn't short on myeloma centers (I live in a large metropolitan area). Once I get the final diagnosis from my current hematologist, I'll get a second opinion from one of those myeloma centers and continue my care there.

I have IgA kappa myeloma. There are only 6,000 folks with IgA kappa in the USA. My Atlanta myeloma specialist knew things my hematologist didn’t. For example, M-spike is not reliable for kappa light chains so serum immunoglobulins need to be measured. My Austin hematologist is listed as a myeloma specialist on the Healthtree website which is confusing to me. Must be that the IgA kappa myeloma folks are few and far between maybe. I consider my Atlanta myeloma specialist to be captain of the ship.

I watch Healthtree myeloma education videos. I read SmartPatients.com myeloma conversations regularly to keep up to date on latest developments in research. I attend the San Francisco and Philadelphia virtual myeloma groups regularly. They are listed on myeloma.org.

This week CAR-T therapy was approved after first line of treatment by FDA. A new BiSpecific therapy will be approved by FDA soon.