Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Welcome - a mantle cell misdiagnosis, turning into a CLL diagnosis, appears frightfully common - we wish you all the best - feel free to discuss anything you like, we're all here to learn - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Hi Sybil - it is possible to have two lymphomas at the same time - In the case of mantle cell vs. SLL/CLL, however, my feeling and my experience is that often one is mistaken for the other, rather than there being both at the same time. What you need is a GOOD hematological pathologist. Can you get that where you are? I believe that the Dr. who runs the lab at New York/Presbyterian is tops. Her name is Dr. Amy Chadburn. She rarely if ever makes incorrect calls. If your doctor agrees, and you're interested, I could put you and your onc in touch with them, you could send a sample and you would know for sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Thank you so much, . If you have contact information for Dr. Chadburn, I would love to have it. It may be a bit difficult to convince my onc. to contact her, but I could try. Last November, my bone marrow sample was sent to an excellent hematopathologist in Ottawa, Dr. Bruce Burns, and he was the one who first cast doubt on its being mantle cell lymphoma. He didn't call it SLL, but he described it as a " large B-cell lymphoproliferative disorder with features of lymphoplasmacytic lymphoma. " My onc., who had originally diagnosed MCL and given me one CHOP treatment because of the 90% bone marrow involvement, switched my treatment to Fludarabine because of Dr. Burns' opinion. But the Fludarabie proved ineffective and he had to switch me back to CHOP. So then he thought it must be MCL again. Meantime, I requested a second opinion from the Dana Farber Centre and paid for the consultation, but it was very disappointing (inconclusive). Now my onc. tends to think it is SLL, and the bone marrow transplant specialist agrees. But I would sure like to know for sure. Sybil Re: Just joining - Sybil > Hi Sybil - it is possible to have two lymphomas at the same time - In the > case of mantle cell vs. SLL/CLL, however, my feeling and my experience is that > often one is mistaken for the other, rather than there being both at the same > time. What you need is a GOOD hematological pathologist. Can you get that where > you are? I believe that the Dr. who runs the lab at New York/Presbyterian is > tops. Her name is Dr. Amy Chadburn. She rarely if ever makes incorrect calls. > If your doctor agrees, and you're interested, I could put you and your onc in > touch with them, you could send a sample and you would know for sure. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Hi Sybil - Dr. Amy Chadburn runs the hematology lab at New York/Presbyterian, in my opinion superior even to Sloan Kettering. The number of the lab is 212 746 2442. You might have some difficulty getting through to her, feel free to use my name, my last name is Balan. - They do lots of consultations from other locations. - I'm sure there would be charges, but the insurance would probably deal with it. - Your biggest problem will probably be to persuade your own guys to do this, they may not want you to " muddy the waters " . But I can almost promise that you'll get a definite and fair diagnosis, mantle, CLL, SLL, or whatever. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Thanks, . Wish I had known about Dr. Chadburn last fall, before I tried Dana Farber's consultation service! That was useless. I have no doubt that Dana Farber is an excellent cancer treatment centre, especially for NHL, but their outside consultation service really sucked in my case. I will call the lab and see what their normal procedure is for consultations. If I have to use your name, I will--and thank you so much! Sybil Re: Just joining - Sybil > > Hi Sybil - Dr. Amy Chadburn runs the hematology lab at New York/Presbyterian, > in my opinion superior even to Sloan Kettering. The number of the lab is 212 > 746 2442. You might have some difficulty getting through to her, feel free to > use my name, my last name is Balan. - They do lots of consultations from other > locations. - I'm sure there would be charges, but the insurance would > probably deal with it. - Your biggest problem will probably be to persuade your own > guys to do this, they may not want you to " muddy the waters " . But I can almost > promise that you'll get a definite and fair diagnosis, mantle, CLL, SLL, or > whatever. Good luck. > > > > > Quote Link to comment Share on other sites More sharing options...
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