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BCG Immotherapy long term side effects

6 years 3 weeks ago #43576 by CatherineH
Hello cta... I am very sorry that you have had so many issues crop up since your treatments. I applaud your decision to improve your health through exercise and diet. Like you said, the fear of cancer mets never really goes away and anything out of the ordinary causes us to assume the worst no matter how hard we try to not let it (it does for me anyway).

I just wanted to share that my mother had fibroid fatty tumors all over her body for many years. Some were tender and some not, depending on where they were located. Some of the larger ones were on her torso, and there were some in her breasts and upper arms, thighs, and lower legs as well. She lived in fear most of her life that she had cancer, but none of them ever became malignant.

My mother's condition seems to be inheritable. I have five siblings, and all of us have at least one of these just-under-the skin growths. Also, some of my sisters' children (now all grown) have them as well.

Please let us know if you get additional results from your cultures. I hope you are feeling better very soon.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 3 weeks ago #43571 by DougG
Thank you for sharing your BCG experience. Hope your symptoms do disappear and that your body autocorrects.

Anita

Anita
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6 years 3 weeks ago #43561 by warrentug
Very sorry to hear about your BCG reaction....I really hope they can get everything back in order. Thanks for posting the info, the more we share the more we can help each other.

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6 years 3 weeks ago - 6 years 3 weeks ago #43560 by cta7978
So, my blood cultures are not finalized yet, however last time they were checked they had not cultured any TB bacteria.

However the specialist at UCSD did diagnose me this week with Dercum's disease, basically a lymphatic dysfunction and attributed it to my BCG immunotherapy 6 years prior. My diagnosis was;

"Mixed Dercum's disease with some hypermobile joints. Which was likely caused by my BCG immunotherapy, altering my lymphatic system, not only by the number of cells traversing the lymphatics but also by inflammatory enzymes secreted by the immune cells injuring the lymphatics slowing pumping and promoting leaking."

So I am a mess right now, hundreds of small fat tumors under my skin, pressing on nerves and blood vessels, causing my nerves to burn, legs to go to sleep, etc.. The tumors mostly are not noticeable thankfully. So mystery solved (so far).. All along I was so worried about metastatic bladder cancer, I never considered what the immunotherapy might do.

Not trying to scare anyone, just reporting my bladder cancer BCG experience. I do have a glimmer of hope that the specialist does think that the immune response/lymphatic problem may self-correct in a few years and the fatty tumors, etc.. will diminish.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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6 years 3 weeks ago - 6 years 3 weeks ago #43559 by cta7978
At this point I am trying to figure out what is happening to me.. only explanations I can find online are possible BCG Tuberculosis infection from my bladder cancer treatments (Yes this does happen!) or Dercum's disease.

http://cid.oxfordjournals.org/content/36/2/140.full.pdf+html

Needless to say I went to an infectious disease specialist and started the 2-8 week blood cultures for BCG bovine tuberculosis. I had more lipomas cut out of my chest and sent them in for culture as well. I also made an appointment in San Diego with the specialist in Dercum's disease.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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6 years 3 weeks ago #43558 by cta7978
Flash forward to December of 2010 and I started getting stabbing pains in my abdomen and electric shock like sensations through my upper chest. Of course I got all checked out for metastatic cancer with x-rays, MRIs, CTs.. Couldn't find any cancer, no explanation.. other than a diagnosis of "Stress". In fact I believe the doctor specifically suspected stress due to my cancer history.

A year later in March 2012 I finally went on some drugs for this persistant "stress" pain that was ruining my life. They put me on a low dose anti-depressant, Nortriptiline, which works for the neuropathic pain.

Finally in June, I was sick of pain and medication and decided to get in shape and figure out what was going on. I started working out and losing weight. I dropped from 225 in June to 185 in September (I'm 6'2").

In late June I noticed a tumor under the skin on my ribcage. Needless to say I flipped out. Got checked out by my oncologist, my GP, they said harmless lipoma (fat tumor).. I didn't buy their explanation. Why would I have a fat tumor right where I have had pain for 2 years?

Lost some more weight, discovered more fat tumors. Had two biopsied, pathology came back "lipoma" (harmless fat tumors).. Lost more weight found dozens of fat tumors. GP has no idea why I am concerned.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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