Looking for a CLL specialist. Suggestions anyone?

[Soultouch]

Have been reading lots of posts about going to a CLL specialist. Unfortunately in India, we don’t have any.

If someone can suggest me a CLL specialist who provides online consultation, that would be a great help. Thanks

[EugeneL2]

I once attended a webinar hosted by Dr. MB Agarwal (Mumbai). Dr. Nitin Jain gave a talk and I found quite a few Indian hematologists asked very good questions. Maybe you can check them out as your potential doctor? youtu.be/cnntDZyN9us(Not working as expected?)

[Soultouch in reply to EugeneL2]

Thanks for your reply EugeneL2.

I have been consulting with Dr.MB Agarwal so far. He is a good doctor but not a CLL specialist I guess. However it’s always good to have a second opinion.

[EugeneL2 in reply to Soultouch]

I agree. Having a 2nd opinion, especially heading into treatment is important.

[bennevisplace]

Nitin Jain is currently based at MD Anderson, but is sure to have contacts in India his home country faculty.mdanderson.org/prof... You could try contacting him for a recommendation. Otherwise.... vaidam.com/doctors/oncology...

[May1270 in reply to bennevisplace]

He is my doctor and I would recommend him.

[joanne17]

My Dr. at Sloan Kettering in Manhattan, USA is a CLL specialist. Dr. Mato is doing a lot of research studies. Since you have access to the internet he might be interested in working with you. You could easily contact him W/ email.

[Soultouch in reply to joanne17]

Thanks a lot Joanne17. Do you have his email?

[joanne17 in reply to Soultouch]

I don't have an email for him but I do have his telephone number. They will take a message and get back with you. Anthony Mato 646-608 3748 When you reach out tell him you are in touch with 2 of his patients. Sometimes it does help to know someone that has recommended him. Keep us up to date.

[Gardengirl44 in reply to joanne17]

Joanne, I am seeing him soon for a 2nd opinion. Nice to see his name here.

[jerard59 in reply to joanne17]

Dr Mato is my guy. I recently entered a study he's running at MSK. He splits his time between NYC and Basking Ridge NJ

[joanne17 in reply to jerard59]

I tried to get into one of his research programs but after a number of tests did not qualify. I was disappointed. Anxious to hear which study you are in.

[jerard59 in reply to joanne17]

Look at my posts, I am giving updates as I go through my trial. A new post is coming in tomorrow on my introduction of venetoclax into the mix.

[joanne17 in reply to jerard59]

Hi jerard59: I'll be looking for your updates. Wish I had qualified. I will live vicariously. I have heard good things about venetoclax.

[Gardengirl44 in reply to jerard59]

I am going to see him for a 2nd opinion type appt. looking forward to it. Maybe he will be "my guy" too. Just curious, if you feel comfortabel, what is your WBC count? I am trying to get my head around "when" someone may be on medication/trials. just generally speaking, as I am sure there are so so many variables. This is all so new to me.

[jerard59 in reply to Gardengirl44]

With him it was quality of life. My whites were around 120,000 but I suddenly grew large painful lymph nodes and my stamina fell and I started getting winded walking up stairs.

[Gardengirl44 in reply to jerard59]

gotcha.

[narl]

infinitemd.com You can get free zoom meetings with experts on this site. I have had two in the past and they are cll experts I've had Dr. Choi before they also have Dr. Nicole Lamanna on there and others.