Abs Lymphs going up after shingles

[Pinhead1]

We saw the doctor for the first time after having shingles. Before shingles his Abs. Lymphs were 2.3 1000/mm3. Now 5 months later it is 3.5 1000/mm3. The Dr. was concerned. We were surprised that he started talking ( not now) about starting treatment. He stated that studies have shown it is better to get on it sooner than later because the results are better. He is a CLL specialists with UCSD. What are your thoughts?

[AussieNeil Partner Administrator]

It would be interesting to know what studies he's referring to, because this is news to me! Are there any other signs that his CLL is returning?

I appreciate you are looking into when to restart treatment when coming out of remission, but a count of 3.5 is still very low and doesn't meet the diagnostic requirement for CLL. According to the iwCLL, "The diagnosis of CLL requires the presence of >5 x 10^9/L B lymphocytes in the peripheral blood, sustained for at least 3 months."

The NCCN guidelines specify that it's the clonal count that needs to exceed 5 x 10^9/L

Professor Thomas Kipps at UCSD providers.ucsd.edu/details/... is well recognised for his CLL research efforts. I wonder what his opinion would be?

Neil

[Pinhead1 in reply to AussieNeil]

He works with Thomas Kipps. Maybe he was just psychologically getting us ready. Maybe he wasn't going to start treatment until he hits 5.0. Flow Cytometry results were 13.1% of the total cells have the following immunophenotype :CD3-,CD5+, We decided to look up his old blood work before treatment. Yikes! His Abs Lymphs were 38.67. We've come a long way.

[AussieNeil Partner Administrator in reply to Pinhead1]

Normally between 5 to 15% of healthy lymphocytes are B lymphocytes, so 13% isn't that high. In absolute measure. my immunophenotype test specifies the absolute B lymphocyte count reference range as between 0.04 and 0.68. 13% of a lymphocyte count of 3.5, works out at a count of 0.455 B lymphocytes and you don't know how many of those are clonal (CLL) cells.

I would expect that there had to me other signs of remission ending for mention of treatment approaching.

Neil

[Pinhead1 in reply to AussieNeil]

No other signs. We added that before treatment his Abs. Lymphs were 38.67. Yikes! He had no signs except a cough. He saw a GP who did a blood test and saw nothing abnormal. What saved his life was he went in to get a deep cleaning of his teeth and his lymph nodes enlarged after the cleaning.

[thompsonellen2]

I have the 17p deletion among other things and when I was first treated we started a little early but that was because I was at 60K and doubling every 3 month and my hemoglobin and RBC also were diving. When you start CAR-T or SCT I understand they do want you to start early for better results, but this has not been the case for my other treatments. I see Dr. Byrd who everyone regards as a top doc.

[Teegolf47]

A couple of comments. One blood test is not a trend. I am assuming that they would use the next blood tests to determine if it is really rising. I see from your profile that you had the I+O+V treatment before. It is possible that they are thinking that you MAY be coming out of remission, and if so, they would want to catch it early rather than waiting.

I am also wondering about what exactly the Flow said about the 13% . Were they defined as 'abnormal B cells' or 'consistent with persistent chronic lymphocytic leukemia' as this would mean they are NOT normal B cells, and would indicate a possible relapse. I have been going to UCSD for 17 years and have had 6 different protocols with them. I have found that they do not jump into treatment without good reason. I think your thoughts of just brining up the thought that future treatments may be on the horizon is more likely the case.

Terry

[Pinhead1 in reply to Teegolf47]

I do not have one complaint about the care he has received. They are wonderful and caring doctors. The 13% are CLL blood cells when before shingles there were none. I think he was just getting us prepared that he would eventually need treatment again. The CLL specialists he had in Seattle at Swedish, where he received his first treatment, told us that they were hoping for a 7 year remission. So we knew that probably it would not last forever.

[SeymourB]

Pinhead1 -

Still seems pretty early. Did you have very swollen lymph nodes or spleen before treatment? Has swelling returned?

Maybe he's the sort of doctor that treats before the guideline indications. Guidlines were written when cytotoxic chemotherapy was the standard. Cytotoxic chemo is riskier, so guidelines were designed to delay treatment till symptomatic disease returned. Targeted treatment that can be repeated has had a few trials, but I'm not aware of an early re-treatment (i.e. before iwCLL guidelines for relapse). I'd welcome any references to such a study. There might be case studies. There are studies of earlier treatment in treatment naive that are in progress, especially in patients at risk of infection or fast progression, which are not assessed by iwCLL guidelines.

What is he proposing for the second therapy?

=seymour=

[Pinhead1 in reply to SeymourB]

He had 3 swollen lymph nodes( 2.3cm , 2.9cm and 2.9cm) and an enlarged spleen( 14.7cm) when he started his first treatment. His doctor at UCSD stated that when it is time for treatment he was going to put him in another clinical trial. The treatment would be a lot like I+O. He had a problem with the O. His blood pressure would drop, but with the new O treatment they administer the infusions much slower from 4 hours to 6 hours. We see him again in December. I will ask him to write it down because I go on overwhelm and my husband is even worse.

We just received a letter from his doctor with more back history of his diagnosis

Also a 5cm lymph node in the abdomen and WBC of 44K.