Healing CLL my way..

[Cdub32]

After 12 years of waiting and watching, 2024 presented some very high white cell counts....between 200 and 300K. My oncologist and I decided to try CalQuence in January of 2024. After 2 weeks, my legs were filled with edema..a bust, and alot of money for a stop the treatment..In July we decided to take another run at this insidious disease...with Brukinza. Again after 2 weeks, I had such pain my left left thigh that I went to the ER. I was admitted to the hospital with a large hematoma and a concern for an infection in the blood mass. After 7 days of antibiotics, tests, and the CDC involved, I am released, White cell counts now 290K range..and I've tried two supposedly successful drugs to no avail..Another recovery time for my body to heal.

October 4th, 2024, I have a biopsy procedure on my right kidney to validate the ablation of 12/2022 on a malignant tumor(size of a quarter). I'm discharged and go home. At 4 pm, I begin to fell very poorly and my wife calls 911. I'm admitted to the hospital in Greenwood, SC and later...at 2 am in the morning, airlifted to Greenville, SC for emergency surgery. The first procedure that day had nicked the aorta and I had lost 4 liters of blood..After 6-8 transfusions, they were able to get the bleeding stopped at Prisma in Greenville. I never realized how close I was to death. Traumatic experience for my wife..calling her at 2 am to tell her that I'm being taken to Greenville for emergency surgery...we have no children..so it was all on her. What a trooper!

Eight days in ICU..test after test..cat scans, MRIs, kidney dialysis, xrays, more transfusions. The Dr, who probably saved my life, told me that there are few 76 yr olds who would have survived this had I not been in the physical condition that I was in. After discharge, I was in Self Reg in Greenwood for another 7 days for an infection of the peritoneal hematoma(from blood loss) and a UTI(catheter at Greenville).

After weeks of home rehab, and a loss of 25 lbs..175 to 150 lbs from the hospital ordeals, I see my oncologist(who also checked on me in the hospitals) and she tells me that I am healing myself...my WHITE CELL count is at 15K. I asked her what happened and her response was.."I don't know" and I've been doing this for 20+yrs. Was it the transfusions..the dialysis, or a Divine intervention? She told me that we won't be looking at treatments for 2-3 years or longer..And my kidney is cancer free!!

I'm taking the results after this long and terrible journey...as my wife said to me in the morning of Oct 5, 2024.."Don't you give up on me!

[SofiaDeo]

I'm curious, what kind of kidney biopsy would use an instrument such that the aorta was nicked? One is lying on their stomach, an ultrasound is being used on your back in the region of the kidney to identify, and the needle is inserted through the lower back. How could your aorta have been affected? I am guessing if you had a peritoneal hematoma, it was the lower abdominal vessel affected? Like "abdominal aorta"? Just because, when people say "aorta" one usually thinks of the heart/the thoracic region. In any case, I'm glad you made it through this horrific, scary experience.

I'm also happy to hear you had a massive cell die-off from the drugs. I've had my lymphocytes drop over 100K from only a few months of a BTK type drug. Hopefully you won't need to try treatment again for a good long while!

[Cdub32 in reply to SofiaDeo]

It was the branch of the aorta that runs thru the abdomen and fuels the kidneys. Thx for your thoughts..

[SofiaDeo in reply to Cdub32]

Right, I was trying to express more of the outraged "how could this have occurred" as something more akin to "a sponge was left in the abdominal cavity after surgery" type of curiosity/horrified question. I imagine the part of the kidney involved with the tumor must have been very close to the renal vein/abdominal aorta for something like this to occur. At least, one would think so.

If the only reason you were started on treatment was a "high white count", please find a CLL specialist from a local CLL Society group/CLL Society website. Our disease is NOT treated like other lymphomas. A high white count, in itself, is not a reason to treat.

[Cdub32 in reply to SofiaDeo]

Not only white cells, leucocytes and platelets getting low and lower along with hemaglobin counts

[21Bedlam21]

What an ordeal for both of you. I’m so pleased you’ve come out on top. Don’t ever give up.

[LeoPa]

4 liters of blood replaced out of 5. Can that be the reason?

[BeckyLUSA in reply to LeoPa]

That’s the first thing that crossed my mind.

[SeymourB in reply to LeoPa]

LeoPa -

The transfused cells don't last too long. They're testing someone else's blood. It will go back up.

=seymour=

[LeoPa in reply to SeymourB]

I thought about that too. But how fast? Will the CLL cells that remained clonally multiply or are they originating in the bone marrow where new ones are created?

[SofiaDeo in reply to LeoPa]

IDK if there are readily accessible, commercially available methods of determining this. If a wealthy person wanted to pay to have various bone marrow sites & lymph nodes biopsied, one might find a probable answer.

[SeymourB in reply to LeoPa]

I believe that CLL cells only multiply in marrow and lymph organs, not in blood. That's where they get the signals to replicate.

[BigfootT in reply to SeymourB]

I believe SeymourB is correct. In my latest lymph node biopsy the pathologist identified proliferation centers in the report.

[Skyshark in reply to BigfootT]

Normally most of the B-cells are in the lymph system 50 grams. The next largest number are in bone marrow 3 grams. The normal amount of B-cells in the blood is less than 1 gram.

Healthy 73Kg male has about 2.66×10^11 B-cells, 60 grams.

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

ALC 100x10^9/L (100k/uL), 5L of blood 500x10^9 Lymphocytes but now nearly all B-cells (=5x10^11). 187% of normal total B-cell population, 113 grams.

I had 75% bone marrow infiltration, 400x0.75 = 300 grams B-cell CLL. One hundred times the normal 3 grams.

Normal lymph system has 50 grams of B-cells. I had a large number of swollen lymph glands, one conglomeration being 21x14cm.

Blood cell distribution 1 gram per square

[BigfootT in reply to Skyshark]

I'm just curious why some CLL patients seem to have little to no LN swelling. I would think all of us would have swollen nodes. A strange disease for sure.

[BigfootT in reply to SeymourB]

I stand corrected. In this very educational 2020 article it states:

Subsequent in vivo labeling studies identified the LN as the anatomical site harboring the largest fraction of newly born CLL cells, with birth rates as high as 3.3% of CLL cells circulating in the PB per day. In contrast, the BM did not seem to be a major proliferation site

pmc.ncbi.nlm.nih.gov/articles/PMC7578574

[cajunjeff]

Congrats on your good news. I saw in an earlier post you were going to start V+O. Did the kidney issue change that plan?

[Cdub32 in reply to cajunjeff]

Yes and No..a simple biopsy turned into a horrible disaster...that changed the timing. Now that my cell counts are low..no need to do V+O in the near futur..years..I hope.

[MelloYellowMe in reply to Cdub32]

Im sorry you went through so much but happy you are now doing well. But figuring how it is so to stop treatment so soon with this type of cancer?

My cell counts went immediately down to normal after first & second dose. But still on V+O for the year. I thought regardless of it just in the blood or blood and lymph, it takes longer on treatment to fully kill it and to keep it from coming back sooner? My blood looks great, and I just did cycle 3 of O, and on many of V, and my night sweats keep coming back. And still have other symptoms, but my blood looks good. We do know I had lymph node tumors in my neck/chest/groin, and they think abdomen. My night sweats are mainly around my neck and chest where most of the tumors are. I feel if they would have stoped treatment just at the blood results I feel they would just climb back up sooner over time, and I would need to be treated sooner again, because I know this isn’t gone. I really pray it is for you 🙏

[Danie50]

awesome amazing blessings! Continue to enjoy life and heal

[BeckyLUSA]

Excellent end to a frightening ordeal. Long may you be treatment free.

[CLLCalifornia-USA]

May you continue to be blessed. Thanks for sharing.🙏Sally

[Edalv]

An amazing story, I am glad you survived the ordeal. It might take a long time for the lymphocytes to creep up again. In the meantime, take good care of yourself and your wife… 🙏

[Analeese]

Wow! You have been through quite a shocking experience. How exciting that you are doing so much better after such a traumatic event. Best of wishes for you going forward.

[TruthJunkie]

WONDERFUL, Cdub32!!! You have been through so much. May your future be peaceful, healthy and bright!