SLL now added to CLL

[lsutigers2018]

Anyone else have CLL, in remission, then told you now have SLL?

[lankisterguy Volunteer]

Hi lsutigers2018,

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That would certainly be an unusual comment from a CLL expert doctor, can you provide some background and context?

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Also, I would suggest that it is merely a word choice that makes no difference in prognostics or future treatment choices. CLL and SLL are the same disease that have slightly different presentations in blood tests, but no significance for symptoms or effective treatments.

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Since you are in the USA, you can use this free service to get a 2nd opinion from a CLL expert that will help you hear an explanation of the fine points:

cllsociety.org/cll-society-...

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Len

[lsutigers2018]

Only difference is more Cat scans and closer watching of involvement in lymph glands. Same imbruvica for now.

[lsutigers2018]

also, had three Pfizer shots so far, and no antibodies. told this not uncommon,

[Eliotf]

I have been reading a bit. It seems ssl is when the leukemia ‘hangs out’ mostly in the lymph nodes. This cause your blood counts it to go up very fast, lymph nodes become large with minimal blood counts. Other than that the doctors treatments are the same. I am one with ssl

[lsutigers2018 in reply to Eliotf]

Thank you for the response! Any good guides on foods, vitamins and supplements? I take two Imbruvica pills daily, multi vitamins/mineral for old men, B complex, KandD tabs, iron, zinc, turmeric, protein and milk, daily. No idea what I am really doing.

[lsutigers2018 in reply to lsutigers2018]

I have to lay off of many of these course before and after surgery, and these are all listed on my chart.

[Eliotf in reply to lsutigers2018]

I take a whole list of vitamins and minerals due to the chemo I had and I was on Steroids for 2 years. Each of them caused their own problems. Here are my non-prescriptions:Probiotics 1 capsule AM settle stomach

Loratadine/Zyrtec 10mg AM My immune system is over active

Flonase Spray AM same as above

Super B-vit Complex Various AM once a day

Multivitamin Various AM once a day

Fish Oil Omega 3& 6 AM due to eye dryness Dr. Recommended

Vitamin D-3 5,000 IU AM once a day - I am dangerously low

Turmeric 2,000 mg AM once a day - Anti-inflammatory

Magnesium Orotate 40Mg PM once a day-for the Calcium absorb.

Calcium Citrate (Citracal)-650 Mg PM -due to steroids - Osteopenia

With Vitamin D-3. 1,000IU

My Prescription list is just as long

[lsutigers2018]

My old generic doctor, retired and blood cancer experience, tested by blood and told me to increase exercise, and give myself tiny weekly testosterone shots. Said my levels dangerously low and would improve my blood which is in safe, but lover level safe. No, he does not sell the stuff, he just works with men over 70 (I am 67). Will asked my prostate doctor who operated on me this summer (TURF enlarged, no cancer) what he thinks. Exercise has allowed me to ween off anti depressants very slowly.

[lsutigers2018 in reply to lsutigers2018]

lower level, not lover level. sorry