Any Cll specialist in India?

[Rifka]

Hi I am from Sri Lanka. my 49 year old husband was diagnosed with MBL in April 2018 by an Indian Hemoto oncologist. His WBC was 14 and ALC was 6.8 at that time . Inially we saw a hematologist in Sri Lanka and did a BM, flowcytometry, CT scan, FLIPT she didn't find anything and we were told he is Bening lymphosytosis and it could could be reaction to an infection. Then we went to India for a second opinion and was told abt MBL.

Since then he had a blood tests every three months. Four months ago his W BC was 11 and ALC was 4.2 and Spleen was back to normal. When we did a blood test on the 09th of this month his WBC was 15 and ALC was7.6. The hemotologyst who saw him in Sl was alamed and was talking about treatment. We really want to get a second opinion bcs he is not still dx with cll or any other blood cancers . Other than a slight discomfort bcs of 13.8x7.4 Spleen he does not have any problem. Other bloods are all normal.

Going through your posts I learnt a lot from you all. In Sri Lanka there's no cll specialists and most of the doctors haven't heard anything about MBL or Cll /Sll. Pls advice us. Thank you

[lankisterguy Volunteer]

Hi Rifka,

We cannot give medical advice here, but only relay our own experiences with CLL. MBL is a condition - possibly described as pre- cancer, where CLL cells are present in the blood (and if checked many people over 60 years have this but never get CLL). Here is a past posting on MBL: healthunlocked.com/cllsuppo... be sure to read the replies to the posting.

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And when you are on that page look for a box marked "Related Posts" (Upper right column on computer screens- scroll way down on mobile devices).

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You may want to read this pinned post

healthunlocked.com/cllsuppo...

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And then read the postings and replies here:

healthunlocked.com/user/vinnet

healthunlocked.com/user/ven...

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They are both in India and have searched for knowledgeable doctors. You may want to sent them a Chat/Private Message to see if they have contacts or doctors to try,

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Len

[Rifka in reply to lankisterguy]

Thank you very much Len, I really appreciate your prompt response. I'll try to contact others in India. This forum is really helpful. I was more knowledgeable than my hemototogyst because of you all

[cajunjeff]

Rifka, I hope you can get a second opinion before treating. The standard for cll is to watch and wait before treating, many people going more than ten years and many other never needing treatment.

The wbc your report is very low for someone with cll and hardly an indication for treatment. Some types of cll are indolent and grow very slowly. People who are doing well rarely treat just due to a high wbc, even if it gets into the hundreds.

Knowing nothing more than you have written about your husband, I would be alarmed that your doctor is alarmed if his concern is just the alc and wbc. In the world of cll people, your husband's numbers are quite good, hardly alarming.

But of course there could be other things your doctor knows not apparent from your post here, so I do not wish to second guess your doctor (and I am certainly no doctor). I do hope you can get a second opinion before treating.

[MsLockYourPosts Passed Volunteer]

As Len and Jeff have said, we are not doctors, and we don’t know the complete picture, but I do know that it is common for an ALC under 30,000 to bounce around without it usually being of concern. Once over 30,000 specialists should be looking for a doubling time within 6 months, not at the number itself. I hope that you can connect with a hematologist more experienced with CLL for a second opinion. I think you need more information before having a discussion about treatment.

[VikPa]

Hello Rifka,

I am based in India currently and getting the consultation for my mother's CLL from the following doctors.

Dr. Dharma Choudhary, BL Kapoor hospital, Pusa road, New Delhi,

Dr. Ashok Vaid, Medanta, Gurgaon ( very close to T3 international airport Delhi)

Dr. Tarun sood, Medanta, Gurgaon.

All three are quite good in their work and have a good reputation. I can share the contact details (private message) of their assistants who can help you book an appointment with them. God bless.