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Thoughts on Recent Dr. visit about Lictic and sclerotic bone lesions (Read 3189 times)
bobkeenan
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Thoughts on Recent Dr. visit about Lictic and sclerotic bone lesions
05/06/16 at 12:24:12
 
I had the opportunity to see a Dr. Kim Dao, at Portland OR OHSU.   She has seen or treated up to 30 patients with Masto or related diseases.   She want to monitor my progress from a hematology viewpoint in addition to my Allergist.  Up to this point I have had urine, blood, bone biopsy, bone density, and skeletal xrays over the past 11 years.   I have known that my bones have lesions but my density has been fine.   My Masto symptoms are more or less controlled with maybe only 1-2 ER visits per year.

She ordered a new skeletal xray.  And then I get a call today.  She says that it shows the previously found sclerotic lesions but now there are relatively large lyctic lesions.  So she has ordered more blood tests and a bone marrow test from my femur with the largest (1") lytic lesion.

She made it sound like this may mean I am moving out of the "indolent" phase and a bit more into the "aggressive" phase.   Depending on the results of the blood tests (they are c-kit tests) and the bone marrow she may prescribe Midostaurin or depending on the C-kit results she had another drug that was near FDA approval that I would be approved for.

Note that my symptoms have not changed much.  If anything they got better since I started adding aspirin to my set of pills.  Dr. Kim seems VERY knowledgeable about the disease.   Part of me wonder if I represent a good candidate for her treatment and studies.  And is motivated that more than whether I really need these other drugs.

Any thoughts on this are welcome.  She would start me on one of the drugs in about 4 weeks.
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sarahkay1111
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Re: Thoughts on Recent Dr. visit about Lictic and sclerotic bone lesions
Reply #1 - 05/20/16 at 02:08:32
 
Hi Bob,

I hope that it doesn't mean it's becoming more aggressive, and I'm glad you are feeling stable:)  I would definitely get a second opinion. Dr. Afrin is a hematologist/oncologist, and is at the U of M in MN/St. Paul now. If your doctor has treated 30 masto patients, that's good, but maybe she could call Dr. Afrin, since he has treated thousands. He is happy to consult with any other doctors, even though he is very busy. I think it's always good to get a second opinion, especially when it comes to rare diseases and symptoms.  Good luck, and let us know how it goes.

Sarah
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Joan
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Re: Thoughts on Recent Dr. visit about Lictic and sclerotic bone lesions
Reply #2 - 05/22/16 at 19:50:42
 
I agree about the second opinion, even though your doctor seems to be up to date, to see if the doctors concur on the diagnosis and which drug to use.  You may already know this, but sometimes you can get a second opinion without actually traveling to another place.  In that case, you would send a copy of the imaging CD and radiology report and ask for a review.  Lytic lesions might need to be treated if they are large or numerous.

Dr. Jason Gotlib is in Palo Alto, CA, at Stanford, not too far from you, if you want to be seen by another doctor.  He was involved in the development of Midostaurin.  Hope it turns out to be a minor problem.
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