Front line treatment options for wait and watch patients

[venk_46]

I am CLL , Dx in 2013 and not yet started any treatment . My lymphocyte count has gone up to 1.50 lakhs, mild enlargement of spleen and a few lymph nodes in stomach and neck .No fever , No night sweat, No fatigue. CD 38 negative , Zap 70 negative. I am feeling very tense due to any possible damage of blood with high leukemia cells ,circulating in my body on vital organs like heart ,lever,kidneys et c

I understand that CLL specialists are suggesting for early treatment of watch and wait patients with the novel non chemo based agents .There is not much of any research done on CLL in our country . Can I have any information on latest clinical trials on patients of watch and wait and recommendations ?

[AussieNeil Administrator]

Hi venk,

Given a lakh is equal to one hundred thousand (100,000), that means your lymphocyte count in countries other than India is 150 or for many of our US members 150,000. Many of us have higher counts and are still in watch and wait, because a high lymphocyte count isn't a trigger for starting treatment. Hopefully reading these posts referenced below will better enable you to assess whether you are likely to need treatment. I anticipate, based on what you have shared, that you will most likely be reassured that you can probably continue on with watch and wait for some time yet:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Do you have a specialist with whom you can discuss your concerns? I appreciate that this is challenging given the low incidence of CLL in your country, but perhaps the referenced information in the above referenced posts would be a good starting point for a discussion.

Neil

[venk_46 in reply to AussieNeil]

Thank you very much , Aussie Niel.

It is sad that in our country I do not get any CLL specialists for consultation . I met 3 different doctors who gave different treatment options. Your reply has relieved my tension.

One doctor told me that in some part of the world ,may be in Europe a trial is on for patients like me who are on watch and wait.

[MsLockYourPosts Passed Volunteer in reply to venk_46]

In some places in Europe and the US there are trials to determine whether treating patients who would normally be watch and wait offers some advantage. These are early trials and the consensus still seems to be to follow established treatment guidelines.

You might want to do some reading - cllsociety.org has good information and links to other reliable CLL specific resources. There are some good videos explaining labs on patient power done by Dr. Susan LeClair (you might need Neil to translate the counts). As for treatments, skim those sections at first so you have a good overview of what is available. You will be in a better position to ask your doctors specific questions about which options are available in India. Keep us posted, and ask any questions.