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Follicular NHL now CLL

Brightmi
Posts: 3
Joined: Mar 2019
Brightmi
Posts: 3
Joined: Mar 2019

New

In 2012 following a colonoscopy, NHL was diagnosed.  Found in a polyp.  Staged at 1(E).  We have been watching and waiting for 7 yrs.  No symptons, no abnormal labs, clean colonoscopies... until now.  Just recieved the pathology back from Feb. 2019 colonoscopy and it showed CLL.  In researching I see that these two conditions seem similar.  CT's will be done this week and we will see his hemotologist on Mar. 15th.  I am not freaking out like I did in 2012 since there has been little change in my lifestyle.  Trying hard to remain calm this time.  Has anyone else had an experience similar to this.  Blessings.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Bright, 

For some reason, CLL is often related to the colon/intestinal tract.  It is usually indolent, or non-aggessive, but there is also an aggressive strain of it, similiar to MCL being sometimes indolent, sometimes aggressive.

It is ordinarily very managable, but I recommend that you have the best hematologist available. The the doctor needs to be a hematologist, not a medical oncologist, as is the case with any leukemia.  Let us know what the CT reveals, and what the doc says,

max

Notmytime's picture
Notmytime
Posts: 1
Joined: Mar 2019

Actually, I went for a blood test to check my hereditary hemochromatosis, and the lab flagged my 10 000 WBC in 2018, and smudge cells. Next, the CLL clinic suggested I look for other cancers May 2018, and breast cancer was found through mammography and ultrasound. Surgery for IDC breast cancer and 1 Sentinel lymph node, revealed a diffuse pattern in the lymph biopsy. Just completed the recommended radiation therapy for a 3 week treatment that used to be 6 weeks, March 2019. At this point, I decided I would skip the colon test. In hindsite, I want a do over. I wish I never had breast surgery or radiation treatments. I was told my CLL SLL was asymptomatic, and not progressed. My biopsy showed a well developed CLL SLL disease. My biopsy for the breast cancer showed one benign and one DCIS with a few scattered invasive cancer cells. My radiation 'burn' is severe and getting worse every day. My 78 percent b cell lymphocytes don't heal very well. I described my symptoms at my first CLL visit. To figure out the complications was excruciating to go through so many systems. And I have a huge hematoma on the surgical site that is very painful. So, a .5 cm DCIS with a few invasive cancer cells has become a 4 cm huge square which causes chronic pain. I want to redo the whole year making different decisions from the science. The neoplastic markers can define the CLL SLL and the newer drugs that target BCL2 and kill the b cells and allow apoptosis sounds promising.

ShadyGuy's picture
ShadyGuy
Posts: 399
Joined: Jan 2017

a person in my son’s extended family was diagnosed with indolent CLL 7 years ago. Dr said he had probably had it several years before diagnosis. He has done very well with Rituxan monotherapy and is asymptomatic. No one wants cancer but your condition should be easily managed. Best of luck.

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