First time post!

[brees]

My husband, 52, Kansas was diagnosed July 2017. I have been reading lots of posts since then, but have never posted his story.

We were initially given the diagnosis of Non-Hodgkin's Lymphoma. It hit us like a ton of bricks. He had a brother pass away from NHL when he was 35. I know there is lots of new technology since then. We were referred to a Cancer center and was told my husband has CLL. That we may have 10 years on W&W before treatment was needed. We felt the weight lifted some. We have been on W&W going every 3 months for blood work. He has had a PET scan, Ultrasound of spleen, FISH test and labs. Trying to understand all the tests and what they mean....

We just had an appt last week and his platelets have stayed under 100 for 2 appt in a row, so his CLL specialist talked to us that he may need treatment soon. He is having NO symptoms. She sent us for a Bone Marrow test and another ultrasound to look at his spleen. She talked to us about 2 types of treatment Ibrutinib or a combo of Rituximab/Bendamustine. Waiting on results from the BM test.

Trying to read up on them, what are some of the markers from his tests that I need to look for? I know she said he was unmutated IGVH.

[Cllcanada Top Poster CURE Hero]

Welcome... I saw you lurking in the bushes 🌿🌿🌿

Based on age and being IGHV unmutated, you should do a serious investigation of clinical trials with combination therapies, and seek a second opinion from a leading CLL specialist... before any treatment.

~chris

[brees in reply to Cllcanada]

I thought our Dr. was a CLL specialist, i will check into that further. My question is why start treatment when he doesn't have fatigue, night sweats, fevers, lymph nodes are stable etc.

[Cllcanada Top Poster CURE Hero in reply to brees]

Platelets under 100 for some time, usually starts a treatment discussion...

[Mystic75 in reply to brees]

Hi Brees,

One determining factor to start treatment can also be based on the blood counts, even if your husband has no symptoms, especially if the platelet and hemoglobin counts are low.

You have my complete sympathy in trying to figure all the tests and what they mean. Fortunately, there is a lot of info on the forum and people with the expertise to help you with them.

All the best to you and your husband!

D.

[Indolent]

I second what Chris is advising. Make sure you are working with a CLL specialist to ensure you are bringing the best tools to this fight.

[brees in reply to Indolent]

I thought our Dr. @ KU Med was a CLL specialist?

[baq724]

I am also in Kansas. I go to KU Cancer center for my local hematologist, but travel to MD Anderson in Houston to see Dr. Wierda as my specialist. There are specialists closer.

cll-nhl.com/p/cllnhl-doctor...

I have heard good things about Brad Kahl in St. Louis. However, if you can get to Houston that would be my first choice. Better chance at a clinical trial with one or a combo of the new treatments.

[brees in reply to baq724]

We see Dr. V at the Cancer center. I thought she was a CLL Specialist.

[baq724 in reply to brees]

I see Dr. Val as well. She is not a CLL specialist, but is extremely knowledgeable in CLL. My philosophy is to have the best team possible. I want a doctor on the cutting edge of new treatments and a knowledgeable local doctor who can see me when I need it and will work with my specialist. Dr. Wierda is one of the best and Dr. Val had been more than willing to work with MDA.

Neither have had to do much of anything except share results as I am in W&W.

[brees in reply to baq724]

so how often do you have to see Dr Wierda?

[baq724 in reply to brees]

I see Dr. Wierda yearly. However, my KU appts and my MDA appointments were almost right on top of each other. So in Dec of 17, my blood counts were stable and they sent the results to Wierda and he said he didn't need to see me for another year. So, it will be 2 years since I have been to MDA come this January. If you go longer than 3 years between visits at MDA, you have to register as a new patient again. So stable or not, I will be going back to MDA in January 2019.

[MsLockYourPosts Passed Volunteer]

Dr. Byrd and associates at Ohio State would be another good choice. He also is involved in many trials. There are several other top specialists around the country. I certainly wouldn't let this doctor start your husband on treatment before getting a second opinion and a very good explanation of why treatment is being discussed. I let my first doctor rush me into treatment. It was a mistake!

PET Scans are not usually the best scan for a CLL. CT scans are usually a better choice. In your position I would look at two places for basic information. The first is clltopics.org - Three Important Blood Tests - which explains things in understandable English. The site is no longer active, so information about treatments is dated, but the basic information about tests is a good place to start.

The other is patientpower.info - specifically the videos done by Dr. Susan LeClair about understanding your labs. You can go back and forth and watch / read them more than once. It takes a while to process everything. I'm still working on it (15 years since diagnosis).

It's a little like doing a jigsaw puzzle. A few pieces go together then nothing until you pick up that next piece that connects a few others. Specialists are still working on finishing the puzzle, but every day they are connecting a few more pieces.

[opal11uk]

I have read your post with interest as I too have a husband diagnosed earlier this year so will follow your hubby's progress if you do't mind, mine is on W/W and at 78 and hopeful that he will never need treatment. I think I too should find a CLL specialist as currently my husband is looked after by a haematologist ..... having said that he may be a specialist in his own right but I think I need to research this too. I wish your husband all the very best and you in supporting him through this.

[larrymarion]

Brees, the chemo combo bendamustine and Rituxamib is not recommended these days if your husband has the 11Q deletion (i learned this the hard way). You need to know the blood factors exhibited by your husband's blood. In addition to 11q, other factors to consider are unmutated vs. mutated, complex karatype, 17p, etc.

there is a famous saying in CLL treatment circles--treat the patient, not the numbers. that means the hemoc should be focused on symptoms and not just the platlet numbers. if your husand doesn't have bulky nodes, major/serious night sweats, etc., traditional chemo may not be appropriate. definitely time for a second opinion, from a CLL specialist!

[Justasheet1 in reply to larrymarion]

Larry,

Times have changed and BR wouldn’t have been my first choice.

That said, I’m 11q and unmutated and received BR as part of a clinical trial with Idelalisib. Thankfully, I received the placebo instead of the idelalisib.

I have had a partial response going on 4 years. Glorious years. I would have had a complete response except for 1 node.

Everyone is different. Praise God.

Good health to all,

Jeff

[brees in reply to larrymarion]

So trying to understand all the lingo that i see on here. I am looking at his FISH test and the abnormal says del(13q) 46.5% all others are in the normal limit

comments state that deletion of 13q as a sole abnormality detected by FISH is associated with a favorable prognosisi when observed in less than 85% of nuclei in CLL

So does that mean he is deletion 13q? his Dr. stated that he was unmutated, but what test states that?

[Cllcanada Top Poster CURE Hero in reply to brees]

Yes 13q deleted, the best prognostic marker.

IGHV unmutated could be a direct Sanger test, but more likely the surrogate markers CD38 postive and/or Zap70 positive.

Surrogates have been used for over 15 years and have about a 70% accuracy. They are part of the Flow Cytometry test, used at diagnosis.

~chris

[brees in reply to Cllcanada]

thanks chris --

I have been looking over his tests and did find that he had a flow cytometry test done and it states:

Lymphocytes comprise 40%of total events. B cells are positive for CD5, CD19, CD20 (dim) CD23, CD38, CD200 monoclonal kappa light chain, and negative for FMC-7. These results are diagnostic of a CD5 + B cell leukemia/lymphoma and consistent with CLL

The neoplastic Bcells are positive for Zap70(55%) and positve for CD38(61%)

[Cllcanada Top Poster CURE Hero in reply to brees]

Yup.. this says unmutated... the mutated/unmutated division for CD38 is 30% and Zap70 is 20%.

Since both are well over then unmutated is probable. What this does prognostically I'm sorry but I don't know... 13q mutated is very good, 13q unmutated is good... that kinda thing...

~chris