by Eric Hofacket on Tue Jul 07, 2015 4:24 pm
Lucia,
Given your brother's diagnosis of myeloma and the extreme back pain, he probably has already had a whole body skeletal survey done at a minimum that would show any significant back degeneration. As previous stated earlier in this thread, MRI and PET-CT scans are more sensitive and would be even better. In my opinion, based on what you have said, if he has not had whole body skeletal survey at a minimum, that might be reason for concern.
Radiologists are the experts at reviewing imaging results and assessing what they mean, though hematologist-oncologists and other doctors have all had experience and training in this as well. It is not unusual for a radiologist to be the first to discover myeloma in a patient. If there is bone damage, your brother's doctors are almost certainly going to treat this and try to rid the spine of any myeloma tumors through drugs or radiation. Repair and reconstruction, if needed, will be done by a spine specialist.
While, as others have said, seeing a myeloma specialist is always a good thing, any competent hematologist-oncologist should be able to run the necessary labs to make a diagnosis and stage the disease. Especially when it appears – as in your brother's case – that he is clearly expressing obvious physical signs, it does not appear he is on the borderline between active myeloma and smoldering myeloma or MGUS, where there could be a difference of opinion between doctors, even myeloma specialists.
I would not expect going to a doctor is going to get a different diagnosis. Maybe a different treatment approach, but not a diagnosis in your brother’s case. I would not worry that you brother is being seen by someone who is totally incompetent just because he or she is not a myeloma specialist. Velcade and dexamethasone is a very common initial therapy to treat myeloma, including by specialists, and in your brother’s case it does sound to me like treatment needs to be started immediately with something.
It can take a little time to do the research to find myeloma specialists in your area and decide who to go with. As you will learn, there can be quite a variation in treatment approaches for myeloma, even among myeloma specialists, and the patient will often have to make a decision about what best suits them. Myeloma specialist become increasingly valuable as the disease relapses and becomes more difficult to treat, or if significant side effects from myeloma or the drugs used to treat it become a problem. The Beacon is a good resource to learn more about this.
I too had very severe back pain that came up out of nowhere shortly after when I was first diagnosed. This is not unusual. I was sure my back was ruined permanently and I would be facing a long recovery. My doctor told me the first step to address the back pain was to start treatment to get the disease under control, and he was right. After a few weeks on Velcade and dexamethasone, the pain started subsiding considerably, and after a little over a month the back pain was gone completely, which really surprised me and I was elated about this.
Many others have had the same result, and then again many others have not. Myeloma can cause pretty severe inflammation in the back, causing great pain, but this is only inflammation and can be treated by knocking the disease down and using powerful anti-inflammatory drugs like dexamethasone.
But myeloma can also cause severe bone damage, which thankfully I did not have. It was mostly all inflammation in my spine. The key is the imaging results discussed earlier, which can provide important clues as to what the case is for your brother and what may need to be done.
Best wishes to you and your brother and I hope he finds some relief from the pain soon.
Eric
