Post-nephroureterectomy for UTUC - now abnormal bladder cells

Posted by lrwants2know @lrwants2know, Mar 13, 2023

I was diagnosed with high grade, muscle invasive Upper Tract Urothelial Carcinoma a year ago. After 12 cycles of Gemcitabin/Cisplatin, the right kidney, urether, bladder cuff, adrenal gland and lots of plevic and retroperitoneal lymph nodes were removed in August. Pathology was a T4 tumour that ate up entire kidney in 7 months. No lymph node cancer detected. Currently in 6th cycle of immunotherapy (Nivolumab) - every 4 weeks.
Follow up March cystoscopy has "multiple red areas, and polyploid lessions"; cytology result was "abnormal cells in a background of RBC". I am undergoing a TUR Bladder in two weeks.
The urologist disccussion stressed abnormal cells not cancer cells. Since the original urothelial cancer was high grade and invasive, do I hope that this time the cancer will be contained if cells removed? Two weeks to TURB, another 10 days for biopsy results - will the abnormal cells develop into cancer before the TURB is done? I don't want to go through another major abdominal surgery in less than a year...

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@lrwants2know

Hi Susan,
Sincere thank you for the information on immune boosters. I have started taking a Vitamin C/Quercetin supplement. Both are very good immune system supports. Also Cranberry Extract to ward off UTI since my urethra and bladder are going to be subjected to catheters for the next 6 weeks with BCG instillations.

The hardest part of a diet change is weaning off chocolate bars. I am a chocoholic and want something sweet to eat. Since sugar feeds the cancer, I am trying my best to reduce. It is disconcerting to reduce sugar and bread and potato consumption only to find the scale going higher. I lost my right adrenal gland when they took out the kidney (they were "stuck" together) and my Thyroid Stimulating Hormone level is higher. I lost 30 pounds from the on-set of UTUC and the start of Immunotherapy. I've gained back 20 pounds (that I don't need). Is my metabolism slower because of the immunotherapy?

My Oncologist, urologist and the onco-urologist surgeon who did the RNU are all confident that the BCG will work in combination with the Nivolumab therapy and that I not loose my bladder anytime soon. I know they are putting a bright spin on it. All of the journal articles on Bladder cancer after RNU surgery for Upper Tract Urothelial Carcinoma note that BCG is not a guarantee, as your husband found out. They say "everyone responds differently", but statistics are supposed to provide a mid-ground of the responses, and Bladder Cancer after UTUC has the mid-ground at the low end of the "progression-free", "overall survival" spectrum.

I hope the doctors are right, but am prepared to say "I told you so". Time will tell.

Give your husband a hug for me.
Linda

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You might want to check into use of 95% standarized curcumin with black pepper extract. Curcumin is appearing in very many positive studies and clinical trials. Google it.
https://pubmed.ncbi.nlm.nih.gov/34347326/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/

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Thanks for sharing. I'm a 58 year old female, never smoker and very healthy. Was diagnosed with high grade UTUC on 2.2.23. I had RNU surgery on 4.10.23 (no NAC). I'm evaluating treatment options. Cisplatin based chemo following the POUT trial protocol is favored by my oncologist. Did you do any alternative treatments beyond the curcumin? My oncologist scolded me a little for asking for IV VitC infusions to boost immune system before starting chemo. His admonishment makes me apprehensive. Photo of left kidney, ureter and the tumor for emphasis.

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@mshel613

Thanks for sharing. I'm a 58 year old female, never smoker and very healthy. Was diagnosed with high grade UTUC on 2.2.23. I had RNU surgery on 4.10.23 (no NAC). I'm evaluating treatment options. Cisplatin based chemo following the POUT trial protocol is favored by my oncologist. Did you do any alternative treatments beyond the curcumin? My oncologist scolded me a little for asking for IV VitC infusions to boost immune system before starting chemo. His admonishment makes me apprehensive. Photo of left kidney, ureter and the tumor for emphasis.

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I am not a doctor and I don't know yours credentials, however most doctors have little or no training in nutrition. You oncologist may have more because chemotherapy also radically damages the immune system. Your blood count will continue to get worse while you take it.
I had stage II muscle invasive bladder cancer. My oncologist did not support my supplementation, but did not prohibit it.. I had 4 split sessions of Gemcitabin/Cisplatin over 5 months. I declined preliminary steroids which damage the immune system. . Before, during and after I was taking one gram doses of both curcumin and "timed release" C about every 4 hours. Also some A, E, D, Selenium and Papaya enzyme to help build platelets . No side effects at all. Now cancer free and on one gram doses twice daily for maintenence.
Be very careful with supplements that are not water suluble as concentrations can become toxic. Most doctors have reasured me that B and C vitamins as well as curcumin will not hurt you because they are flushed from your body in hours.

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Best to ask your doctor, urologist AND oncologist. I will be having BCG instillations to "irritate and enflame the bladder" and wake-up my immune system to start fighting anything that looks abnormal. According to Mount Sinai Hospital (see below), tumeric can reduce inflammation, which might defeat the purpose of the BCG instillations.

We only have one kidney now and need to take care of it. The solo kidney might not be able to deal effectively with high doses of any supplements. It now filters ALL your blood instead of sharing duties with the missing kidney. Some older studies indicate that high doses of tumeric may increase kidney stones.

Note that Upper Tract Urothelial Carcinoma (UTUC) is similar to bladder urothelial carcinoma, but they are NOT the same disease. What works for primary bladder urothelial carcinoma may not work for UTUC followed by bladder cancer. BCG is very good for primary bladder urothelial carinoma but is less effective for bladder cancer after UTUC.

Take all the information from these dialogues to your doctors. They will know or find out if a supplement will help or hurt. I only had one functioning kidney when I started full-dose chemotherapy. Yes, my iron content dived, but I also have Beta Thalassemia Minor which messes up my "iron processing" anyway. My white blood cells took a nose dive near the end of the treatment, but recovered well. No nausea, no vomiting, slight hair loss, and lack of appetite for a few days.
https://www.mountsinai.org/health-library/herb/turmeric
Turmeric (Curcuma longa) has been used for 4,000 years to treat a variety of conditions. Studies show that turmeric may help fight infections and some cancers, reduce inflammation, and treat digestive problems.

Curcumin is also a powerful antioxidant. Antioxidants scavenge molecules in the body known as free radicals, which damage cell membranes, tamper with DNA, and even cause cell death. Antioxidants can fight free radicals and may reduce or even help prevent some of the damage they cause.

In addition, curcumin lowers the levels of two enzymes in the body that cause inflammation. It also stops platelets from clumping together to form blood clots.

Cancer
There has been a great deal of research on turmeric's anti-cancer properties, but results are still preliminary. Evidence from test tube and animal studies suggests that curcumin may help prevent or treat several types of cancers, including prostate, breast, skin, and colon cancer. Tumeric's preventive effects may relate to its antioxidant properties, which protect cells from damage. More research is needed. Cancer should be treated with conventional medications. Don't use alternative therapies alone to treat cancer. If you choose to use complementary therapies along with your cancer treatment, make sure you tell all your doctors.

Memorial Sloan Kettering Cancer Center
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/turmeric
Talk with your healthcare providers about using turmeric and foods that contain turmeric if you’re getting chemotherapy. In lab experiments, turmeric stopped some chemotherapy medications from working against breast cancer cells.

Talk with your healthcare providers about using turmeric and foods that contain turmeric if you have a family history of kidney stones. Taking turmeric supplements may put you at a higher risk of getting kidney stones.

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@sepdvm

I also am a terrible chocoholic, but high quality dark chocolate can contain less than 4 grams of sugar per serving. I save my sugar expenditure on dark chocolate daily. I don't even like sweet milk chocolate anymore! Limiting sugar gets easier as time goes on. I hope someone is doing a thyroid panel with the high TSH as Hypothyroidism is possible. Hypothyroidism is a side effect of some immunotherapies and one symptom is weight gain. My husband is permanently hypothyroid as a result of Pembrolizumab and his TSH and T4 are still erratic even on levothyroxine supplement daily. The oncologist keeps adjusting the dose. I am ready for him to see an endocrinologist instead of just monitoring with the oncologist. I have been hypothyroid for many many years but very stable on levothyroxine despite all the cancer treatments. Good luck and treat yourself to some dark Ghiradelli .....you deserve it!

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Major problem is that Dark chocolate tastes like Exlax.

I'll eat dark chocolate, but only if it covers peppermint filling or marizpan almond paste, which defeats the purpose of reducing sugar. 🙂

I am trying and will eventually not "WANT" chocolate. Didn't want any chocolate during chemo, but then, didn't want to eat anything else either except for cheese ravioli in tomato sauce.

Bye,
Linda

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@donsunlover

I am not a doctor and I don't know yours credentials, however most doctors have little or no training in nutrition. You oncologist may have more because chemotherapy also radically damages the immune system. Your blood count will continue to get worse while you take it.
I had stage II muscle invasive bladder cancer. My oncologist did not support my supplementation, but did not prohibit it.. I had 4 split sessions of Gemcitabin/Cisplatin over 5 months. I declined preliminary steroids which damage the immune system. . Before, during and after I was taking one gram doses of both curcumin and "timed release" C about every 4 hours. Also some A, E, D, Selenium and Papaya enzyme to help build platelets . No side effects at all. Now cancer free and on one gram doses twice daily for maintenence.
Be very careful with supplements that are not water suluble as concentrations can become toxic. Most doctors have reasured me that B and C vitamins as well as curcumin will not hurt you because they are flushed from your body in hours.

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Thank you very much for your reply. I appreciate it very much.

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@donsunlover

I am not a doctor and I don't know yours credentials, however most doctors have little or no training in nutrition. You oncologist may have more because chemotherapy also radically damages the immune system. Your blood count will continue to get worse while you take it.
I had stage II muscle invasive bladder cancer. My oncologist did not support my supplementation, but did not prohibit it.. I had 4 split sessions of Gemcitabin/Cisplatin over 5 months. I declined preliminary steroids which damage the immune system. . Before, during and after I was taking one gram doses of both curcumin and "timed release" C about every 4 hours. Also some A, E, D, Selenium and Papaya enzyme to help build platelets . No side effects at all. Now cancer free and on one gram doses twice daily for maintenence.
Be very careful with supplements that are not water suluble as concentrations can become toxic. Most doctors have reasured me that B and C vitamins as well as curcumin will not hurt you because they are flushed from your body in hours.

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Hi. Was it dexamethasone (steroid) that you declined? Can you point me to immune system damage via that steroid?
Thank you very much. I hope I'm not too much of a bother!

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@mshel613

Hi. Was it dexamethasone (steroid) that you declined? Can you point me to immune system damage via that steroid?
Thank you very much. I hope I'm not too much of a bother!

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I don't know, all steroids surpress the immune system, which is needed to fight cancer. I believe this particular steroid is given because it reduces covid symptoms(especially lung inflamation).

Excert from following article: This drug works by dampening down the body's immune system. Moreover, it helps treat different diseases, including inflammation or swelling in the body, such as in allergic and asthmatic patients where inflammation is in the airways and lungs, or among patients with sore and inflamed joints (Jiang, K. et al., 2017).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7836247/
It's possible that curcumin far exceeds the anti-inflamitory powers of the steroid and it is proven to also strengthen the immune system. While organized medicine has resisted holistics, they are now realizing the need for it's power to heal.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572027/

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@mshel613

Hi. Was it dexamethasone (steroid) that you declined? Can you point me to immune system damage via that steroid?
Thank you very much. I hope I'm not too much of a bother!

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I should add that I tested positive for Covid after know exposure during my chemotherapy. After 5 days I tested negative and continued therapy. I have never had any Covid symptoms.

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