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Support Group Leader Summit 2012 - Working Lunch with Dr. Durie

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Following Greg Pacini was the Working Lunch with Dr. Durie. This is a very popular segment of the summit because it gives the support group leaders the opportunity to ask random questions of Dr. Durie, who conveniently does not eat in the middle of the day. He answered the questions in depth, but I couldn't write as fast as he answered them, so what you are going to get here is the gist of what was said. 

As we opened our box lunches, he opened the session with the question: Are there recurrent issues in your groups?

The first issue that came up was the problem of infection. How should they handle it if someone gets sick and spikes a fever?
Dr. Durie said the best way is to make like a Boy Scout and Be Prepared. You have to pay attention to fever. You need to have it checked out right away. So what do you do if it is Friday night after 5:30 and you need someone to call? Plan ahead. Don't wait. Have a number ready. Take antibiotics with you when you travel in case you spike a fever when travelling. Carry a list of medications with you with your doctor's number or email on it.

What about taking the vaccine for shingles? 
Ask if the vaccine is live because myeloma patients should NOT take live vaccines.

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If a family member gets the vaccine and then comes down with a pseudo version of chicken pox, which sometimes happens, how long do you have to avoid them?
Two weeks at least

How about if your protein starts going up but you have no other CRAB symptoms. Do you need to start a new treatment?
It's not an absolute reason to restart therapy, but you don't want to drift too long before being checked. The answer is that you need to double check to make sure if there are any new bone lesions.

How do you deal with doctors who do not understand what spiking a fever means in myeloma?
Carry a summary letter from your own doctor telling them what it means.

What about the level of beta-2 micro?
When first diagnosed the number is important for staging. Should you ever have it re-checked? Yes, at relapse or if there is a question about the status of the disease. However, it does go up because of infection, so it is not an absolute indicator of myeloma activity.

What are MGUS and smoldering myeloma?
Smoldering myeloma and MGUS are ongoing immune defects that precede myeloma.

A transplant eligible patient wanted to know if and when he should have a transplant. 
Dr. Durie said that it is an open question. It is not mandatory to have a transplant. He might wait for the VRD studies, where they are seeing that somewhere around half of the patients can have a complete remission. There are small numbers of cells that are left. If in complete remission, the average length of remission is 2 years, so you could have your stem cells harvested, but there would be no rush for 2 years. If we get to the point where there is definitive information about transplant, then he would be more definite.

Extreme cramping. What to do?
Cramping can be drug related. It is more common with imids than with proteasome inhibitors. If you get them when you are off medication, then check electrolytes, potassium, magnesium. You should actually check all meds. Statins may cause muscle issues.

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Why in myeloma do some of the Ig's go up while others go down?
If you have IgG myeloma, the IgG takes over and the IgA and IgM go down. If you have IgA myeloma, the IgA takes over and the IgG and IgM go down. The increases and decreases tend to be in proportion. However, even if the IgG (for example) drops to normal, the IgA and IgM stay somewhat low.

What about neuropathy? 
Neuropathy is the biggest problem we don't know how to deal with. Some neuropathy is caused by the treatment, and we have topical treatments for it, including a neuropathy cream containing capsaicin. Teresa Miceli, a nurse from the Mayo Clinic who facilitates the group there, suggested that the antidepressant Cymbalta (duloxetine) had been found to relieve the symptoms of chemotherapy-induced peripheral neuropathy.

 

What about the problem of no myeloma specialists in many areas of the country?
Raise the educational level in the community. Take the IMWG Guidelines to your doctors. 

 

1 Comment

I have IgA lambda light chains smoldering multiple myeloma and systemic lupus. My current labs as well as those taken 5 months ago indicate I am beginning to spill protein into the urine. Ho do I know which disease is causing the problem?

Thank You,

Ruthie

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