All lymph nodes are gone but WBC are very high.

[Karate]

Hi everyone

I was diagnosed with CLL in September 2021 at age 43 with elevated white blood cells of 17000, and I was very stressed. I lost a lot of patience and weight, but after time I accepted that CLL, and I started my new life with it like nothing happened to me going to the gym and eating healthy. I tried different foods; I can say I stopped sugar, fruits, and bread at all for 3 months, but nothing changed. My WBC is still going up, but a little bit. After one year, I noticed lymph nodes in my left neck and pelvis and also behind my right head. Those lymph nodes staid for two years. All these 3 years I was in W/W, but this last 6 months my WBC went up from 45000 to 84000, but I am still eating healthy, and I increased my working out by going to the gym 4 times a week doing heavy lifting in the morning and walking 6 miles in the afternoon for 4 times to 5 times a week. Drinking Cordysaps every morning and taking 2500 mg of curcuma 2000 in the evening and 500 mg before bed for six weeks. Three weeks ago, I noticed all my lymph nodes were gone. I was happy, but the news is I had my blood work, and they found my WBC is up from 84000 to 180000 and my platelets are 190 in the normal range. I don't feel tired; I don't have night sweat; I sleep like a baby.

My question is why all my lymph nodes are gone but my WBC is very high.

When my WBC is 17000, 35000, or 8400, I have those lymph nodes, but at 180000, no sign of lymph nodes.

I don't know if the cause of my WBC high is working out a lot with heavy lifting and walking 4 times a week for 6 miles.

I still feel strong, like I don't have CLL at all. There is no medication for right now.

Is anyone able to explain to me this?

Thank you.

[MisfitK]

It could just be your cancer cells originally buried themselves in your external/feelable lymph nodes, but once those cancer cells died off, they were not replaced there by other cancer cells b/c the new cancer cells decided to stay in the bloodstream or buried themselves in more internal lymphs or organs.

I assume you've never had a CT to verify your organ and internal lymph node status vs your external feelable ones?

As for no treatment right now, is that your choice or your doc's?

I can tell you that with your ALC rise, you have hit a pathway for treatment - you've now more than doubled in 6 months (after almost doubling in the 6 months prior). At this point, if you are not in treatment, I hope they are running more extensive tests and planning more rapid watch and wait appointments so you don't fall off a cliff b/c your cliff seems like it's getting close.

If you lock this email, I can post more or you can check my bio to see that you and I are probably on the same path.

PS - Was a test run to ever determine your disease markers, other than "unmutated"? I didn't see anything in your bio...

[Karate in reply to MisfitK]

I had two times CT scan with contrast and there is no sign of lymph nodes. They only showed mild enlarged spleen.

[scryer99 in reply to Karate]

There's the answer maybe. Your spleen can hold a lot more spare cells than any individual lymph node. And it can swell quite a bit, up to 4x volume IIRC.

That will need to be monitored though, as swollen spleens are prone to physical damage, laceration, and worst-case rupture. You will be recommended for treatment before things get to that point, and spleen swelling will eventually result in physical symptoms that are a good warning sign and should not be ignored.

High ALC counts by themselves can sometimes happen though. The board record is > 1M. And there's no number that indicates treatment is necessary, it's just an indicator that other symptoms are likely to emerge soon.

ALC can spike for a few reasons, and it's been known to decline even as CLL remains active. So just keep monitoring. The trend is your friend.

[AussieNeil Partner Administrator]

I note that you are drinking Cordyceps every morning. The paper referenced below and other papers note how Cordyceps can boost lymphocyte production and activity, though there seems to be more of an effect on T than B lymphocytes.

Cordyceps spp.: A Review on Its Immune-Stimulatory and Other Biological Potentials

ncbi.nlm.nih.gov/pmc/articl...

I've mentioned many times over the years that products that make claims about boosting our immunity, generally rely on experimental evidence showing lymphocyte growth.

Also, possibly you might be among those who has CLL that is stimulated by the Beta Glucans, which is a major structural constient of fungal cell walls.

I'd suggest stopping drinking the Cordyceps and seeing if your lymphocyte count drops back.

Neil

[Karate in reply to AussieNeil]

That what I have to do now .Thank you

[Karate in reply to AussieNeil]

My T cells are normal, my problem is B lymphocytes.

[Phil4-13]

Karate, my WBC are 184,200, and I feel fine. The number increases slowly, in W&W 4 years. Other blood work not great, but not awfully bad. My doctor says, "Since you're feeling fine, no worries, see you in 3 months".😊Sandra

[LeoPa]

Looks like something pushed your lymphocytes out of those nodes that shrank and into your bloodstream. BTK inhibitors do the same thing. Initially this leads to a rise in ALC. If this is the case, with time, the alc should go down, while hopefully those nodes do not grow back.

[Vlaminck in reply to LeoPa]

That's what I was thinking. That they've accumulated back in the blood, as I have heard that they can be one place or the other (or both) so if no lymph nodes, that's where they would have to be, in your blood and your WBC is high accordingly, or so I would speculate.

[Rico49]

Can't explain why your swollen nodes are gone but I can share this. I was in watch and wait 7 years and eas followed by a hematologist at home as well as a specialist at Moffitt Cancer center. I had swollen nodes that lit up a ct scan and pet scan like a Christmas tree! as well as an enlarged spleen.

what I learned was they focused on my platelets and hemoglobin. I remember the specialist telling me he had a patient with a wbc of 350,000 that was not in treatment.yes 350,000.

My bone morrow was 80% infitrated and they still didn't treat me.

When my platelets reached 68

, my hemoglobin was 9, my infiltration was 90%,my anc was 1.1,my treatment began O+V.

wbc was on 27.

Fast forward one year.Im in remission. Highly recommend you have a specialist on board especially at your age. I'm 75.

Good luck. My experience with O+ V was amazing.

[Karate in reply to Rico49]

I am looking for patients around my age in Columbus, Ohio, and get in touch with them.

Thank you.