[Sister In Law]

Does nerve pain get better with treatment?

by Sister In Law on Sun Oct 25, 2015 11:04 am

My husband is suffering so much with nerve pain from the myeloma. He has not been treated yet because our insurance company has denied both Velcade and Revlimid. He's at a very low point and in tears from the pain and frustration. He has been sick for over five months now and we have had one heck of a time to get a diagnosis (though he requested that they test him for myeloma FIRST) since his sister and father had it.

I believe he is under medicated for the pain for one thing – taking 3-4 7.5 hydrocodone per day and some gabapentin (1500 mg) per day. We are concerned about increasing the dose because his kidneys may take a hit (?).

So far, he has no lesions, no increase in calcium levels, no kidney issues, or anemia, but he has 30% of his bone marrow with lambda myeloma. I don't know if that is a large number or not. I have seen others with much higher numbers.

But it is the pain from the damage he is getting on his nerves from the oddball protein that is murderous. I believe the nerve damage is even affecting his tongue, since things taste bad. His legs are becoming weak and his hands and feet are like ice. This is terrible.

Anyone have similar issues with myeloma?

He is at stage 2 because of the 30% myeloma cells in his bone marrow.

[Little Monkey]

Re: Does nerve pain get better with treatment?

by Little Monkey on Sun Oct 25, 2015 12:50 pm

Why is the insurance refusing to pay for Revlimid or Velcade, they are both fairly standard myeloma treatments ?

[Cheryl G]

Re: Does nerve pain get better with treatment?

by Cheryl G on Sun Oct 25, 2015 1:55 pm

Hi Sister in Law,

I'm very sorry to hear about the pain your husband is suffering.

From bits and pieces of what you've described in this posting and your earlier postings, it is not clear to me what exactly your husband's diagnosis is, and I think that could be causing the problems you've had with getting Revlimid or Velcade approved to treat your husband.

You say that your husband doesn't have any anemia, elevated creatinine, elevated calcium, or bone lesions. Those results traditionally would indicate that your husband has either MGUS or smoldering myeloma, although it's possible using new diagnostic that he would be categorized as having symptomatic (not smoldering) multiple myeloma.

You also say that your husband has 30 percent plasma cells in his bone marrow. That would indicate that he does NOT have MGUS, meaning he either has smoldering multiple myeloma (which normally isn't treated) or symptomatic multiple myeloma (which almost always is treated).

What I can't find anywhere in your postings is the level of your husband serum (blood) M-spike or his serum (blood) free light chain levels and ratio. If you cannot determine what these are from your husband's tests, please have your doctor or a physician's assistant point them out to you. Those results probably play an important role in determining whether husband is classified as smoldering or symptomatic:

I've looked through your postings in this thread,

"Monoclonal protein band in husband's urine" (started Sep 11, 2015)

and also in this thread,

"Hubby just diagnosed with Stage 2 multiple myeloma" (started Oct 19, 2015)

and I don't find any mention of your husband's serum M-spike or serum free light chain levels and ratio. I suspect that is because you either have not been given those results, or they are buried somewhere in them. That's why you probably want to have someone at your doctor's office make sure you have the test results and point out the serum M-spike and serum free light chain results in them.

Also, just as an FYI, the new diagnostic criteria for distinguishing between MGUS, smoldering myeloma, and symptomatic myeloma are explained in this article:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

Good luck!

[Sister In Law]

Re: Does nerve pain get better with treatment?

by Sister In Law on Mon Oct 26, 2015 11:59 am

I wish I had better information that you have all asked about. I know he has an M-spike according to the electrophoresis / immunofixation, but I don't have the numbers other than the doctor told us 30% in the bone marrow, so he called it stage two myeloma.

The doctor was mean and arrogant. I asked him specifically to test for amyloidosis since my husband's sister had that, and myeloma. But he told me I needed counseling! Can you believe it? He did not do the test (at least he did not tell us results if he did). I am thankful that we will see another doctor on Friday in the same group, and he is a myeloma specialist. He helped my sister-in-law during her transplant. She was his first amyloidosis patient. She had a very tough time of it. Her organs were all ruined before she even started treatment, so it was tough.

Thanks for the links that you sent to me in your note. I am pretty green at knowing numbers and percentages with this disease. I went with my sister-in-law to many of her appointments, but did not pay as much attention to the information as I would have if it were me or my husband. So I know enough to be dangerous.

It is odd that he has no CRAB. But, the doctor said because of the 30%, he has stage 2 myeloma. I wonder if that arrogant doctor has a clue? Maybe he doesn't know what he's doing. He's normally a lymphoma / leukemia doctor. Why we got sent to him is a mystery.

I did find out that Velcade is approved. So that's a relief at least. It is the horrific nerve pain that is killing him, and the terrible fatigue.

[Multibilly]

Re: Does nerve pain get better with treatment?

by Multibilly on Mon Oct 26, 2015 12:28 pm

Sister in law,

Glad you are seeing a multiple myeloma specialist later this week. I had the same concerns / questions that Cheryl rose yesterday.

Regarding amyloidosis testing, doing a Congo red stain test (the test used to detect amyloidosis on a bone marrow biopsy) during the microscopic examination portion of a bone marrow biopsy test is a fairly standard practice ... at least that is my understanding. So, chances are the test was run. In any case, it's easy enough for a layman to scan the bone marrow biopsy report for the word "Congo" to verify this.

All lab tests, including your bone marrow biopsy reports, are the patient's property in the USA. So, when you see the new doctor on Friday, just ask for a copy of all the lab tests and reports ... and a copy of the doctor's diagnosis notes. They can't legally deny you copies of these reports.

Having ongoing copies of lab reports are incredibly useful. You might want to also ask if there is an option to additionally get access to online copies of the reports (often called a "patient portal") ... although a bone marrow biopsy report may not be posted on such a service.

[Sister In Law]

Re: Does nerve pain get better with treatment?

by Sister In Law on Tue Oct 27, 2015 10:07 pm

Hi Multibilly,

I am so glad that I found my post again. I have had a heck of a time to find my posts and therefore to find answers to them!

Yes, we need the bloodwork and the reports. My husband needs to get on their patient portal. Those things are great. I am in the dark about so many things. That first doctor was so mean and rude. He has it in his head that my husband's screaming nerve pain is from diabetes, but my husband has only been borderline and his A1C has always been normal. This neuropathy began all at once. It also affected his autonomic nervous system. His blood pressure dropped to very low levels and he could not digest anything. His stomach quit working and so did his colon. It was a nightmare.

So he had this terrible pain and all this crazy stuff going on. The first thing he did was ask them to test for myeloma, since his sister died from the inability to recover from a stem cell transplant and the amyloidosis in her body, but she was in total remission from her myeloma. The dad had it 20 years ago, still has an M-spike, but is in total remission. It runs in the family. But his doctor ran the wrong tests and sent him all over creation instead. So it has been five months of hell with myeloma and NO TREATMENT YET! It's a nightmare!

So Friday, I hope he can start with something. Personally, I believe the steroids will help him feel better for a few days. At least remove the terrible fatigue and maybe the inflammation from the nerves being harmed. The poor man has been reduced to laying on the couch most of the time and crying. He drags himself to work every day, but barely makes it. It's been so hard to wait so long.

I very much appreciate all your comments and help. I know that this forum is wonderful and I want to have the comfort and help from others as we endure this common thread we have together. I hope I can understand how to find my posts and the answers. I made the mistake of starting threads in MGUS and smoldering. I did not know what his diagnosis was yet, other than he had an M spike. So I was sort of all over the place at first.

I will tell you all how it goes on Friday. It's sad that he is desperate for treatment. He feels like they are letting him die while he waits.

[Multibilly]

Re: Does nerve pain get better with treatment?

by Multibilly on Wed Oct 28, 2015 10:14 am

Sister in Law,

It's oh-so-easy to find your posts if you simply register on this site. It's also much easier for folks to find your previous posts, understand the patient's history, and offer better advice if you do this simple step. This registration can also be done completely anonymously to protect your privacy.

[Sister In Law]

Re: Does nerve pain get better with treatment?

by Sister In Law on Sat Oct 31, 2015 9:47 pm

Thanks for the advice!! I didn't know that a person has to register. Or, I thought maybe when I posted, I was registered. I will look at that. It is very hard for me to find anything I have posted or the responses right now!! Thanks for telling me!!