How long should this take?

campinmaine

Hi all- I have recently ben diagnosed with Mantle Cell Lymphoma. I first visited my primary care the 1st of November due to swollen nodes. Got a Cat Scan, blood tests and X-ray right away and then things really slowed down. My first visit to Moffitt in FL to see a hmatologist as 11/20. Since then had lots of blood tests,  lymph node removal/biopsy, bone marrow biopsy, colonoscopy and endo. Last results came in a week ago (12/27)  and my appointment to see the hematologist for treatement options isn't until 2/8 which seesm like a long time. I did requst to se the MCL specialist at Moffitt (Dr. Bijal Shah), but I requested that two weeks ago based on my research.

My question- Is it typical for it to take 3 months to get to a treatment plan? Lucky for me I'm feeling okay and don't have many of the typical symptoms.

I also tried to get remote appointments with Dr Wang in TX & Dr Juan in NY but they dont do that presumably because insurance doesn't cover that. That also seems ridiculous to me with all the technology available and time restrictions of these Drs.  Even after I get to see Dr Shah I'm likley going to want a second opinion.

 

Happy New Year, good thoughts and healing to all.

 

illead

Hi Campin

You no doubt read my prior post to Nellie.  Sounds like you have done your part in researching.  I'm sorry that you don't seem to be having any success getting in touch with Dr. Wang and others.  We have Medicare so it is no problem getting a 2nd opinion, not sure why your ins would not pay for it.  Dr Wang would probably love to put you in a clincical trial especially for 1st line treatment of MCL.  Did you look at the video in my post to Nellie?  Dr Wang says to google Dr. Wang MCL and you can no doubt find his email address and he will answer you (we don't have it).  If you have not looked at the video, I think you should. It's under the thread titile "Indolent Mantle Cell" which is the thread right before yours. An important thing also is for you not to worry about the length of time until your appointment.  There is a newer way of thinking with some cancers, especially  lymphomas and MCL and that is "Wait and Watch" as long as there are no symptoms.  The thought is why subject the body to chemo until necessary.  With lymphoma especially, it really doesn't matter if you catch it early even Mantle Cell.  The wait is a good thing, it gives you more time to try to get with Dr. Shah or even Dr Wang.  Keep working on it, don't give up, you could be put in an important trial. 

Wishing you well,

Becky

campinmaine

illead said:

Hi Campin

You no doubt read my prior post to Nellie.  Sounds like you have done your part in researching.  I'm sorry that you don't seem to be having any success getting in touch with Dr. Wang and others.  We have Medicare so it is no problem getting a 2nd opinion, not sure why your ins would not pay for it.  Dr Wang would probably love to put you in a clincical trial especially for 1st line treatment of MCL.  Did you look at the video in my post to Nellie?  Dr Wang says to google Dr. Wang MCL and you can no doubt find his email address and he will answer you (we don't have it).  If you have not looked at the video, I think you should. It's under the thread titile "Indolent Mantle Cell" which is the thread right before yours. An important thing also is for you not to worry about the length of time until your appointment.  There is a newer way of thinking with some cancers, especially  lymphomas and MCL and that is "Wait and Watch" as long as there are no symptoms.  The thought is why subject the body to chemo until necessary.  With lymphoma especially, it really doesn't matter if you catch it early even Mantle Cell.  The wait is a good thing, it gives you more time to try to get with Dr. Shah or even Dr Wang.  Keep working on it, don't give up, you could be put in an important trial. 

Wishing you well,

Becky

Thanks!

Thanks for the reply Becky! The issue is that I was trying to set an appointment with Dr Wang without making an in person visit. I was hoping that we could do it with a webcam etc. Apparently insurance won't cover that kind of an appointment so they don;t do it. I agree 100% that I don;t want to start any treatment until I absolutly need to. I have seen Dr Wangs video and read all I could find written by him on the topic. I love his passion. I'm confident that Dr. Shah will be great as well. I'll stay in touch.

illead

Confidence

That is of utmost importance.  I believe you are "on this", you have done your research and you know all the options and you trust Dr. Shah (no doubt he is up on everything) , I have no doubt he is an excellent doctor and also knows much about MCL so it sounds like you're in good hands.  He may want to put you in a trial also, be sure and ask (that is if you're willing of course).  Yes, please keep me updated.

Becky 

campinmaine

illead said:

Hi Campin

You no doubt read my prior post to Nellie.  Sounds like you have done your part in researching.  I'm sorry that you don't seem to be having any success getting in touch with Dr. Wang and others.  We have Medicare so it is no problem getting a 2nd opinion, not sure why your ins would not pay for it.  Dr Wang would probably love to put you in a clincical trial especially for 1st line treatment of MCL.  Did you look at the video in my post to Nellie?  Dr Wang says to google Dr. Wang MCL and you can no doubt find his email address and he will answer you (we don't have it).  If you have not looked at the video, I think you should. It's under the thread titile "Indolent Mantle Cell" which is the thread right before yours. An important thing also is for you not to worry about the length of time until your appointment.  There is a newer way of thinking with some cancers, especially  lymphomas and MCL and that is "Wait and Watch" as long as there are no symptoms.  The thought is why subject the body to chemo until necessary.  With lymphoma especially, it really doesn't matter if you catch it early even Mantle Cell.  The wait is a good thing, it gives you more time to try to get with Dr. Shah or even Dr Wang.  Keep working on it, don't give up, you could be put in an important trial. 

Wishing you well,

Becky

Dr Wang

Hi Becky- I'm seeing Dr Wang for a second opinion on 2/13 after I see Dr Shah at Moffitt on the 8th. (I'm in Tampa). I'll be interested to hear if they have different approaches. Thanks for your continued support of all the folks here and I wish you and your husband the best.

Henry