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My partner was recently diagnosed with stage 4 metastatic bladder cancer

3 months 2 days ago #60035 by joea73
I am sorry to hear that neoadjuvant chemotherapy did not work as well as we all looted for. But, it is possible that
it did prevent the cancer to spread other organs, except a few lymph nodes,which the doctor had hoped not to find. The tumor in the prostate can be incidental finding as about 30% of bladder cancer patients who undergo radical cystectomy are found to have prostate cancer.

Keytruda was the first immunotherapy which had been approved by FDA for advanced bladder cancer or metastasized bladder cancer for the patient whose chemotherapy did not respond. It uses a completely different mechanism to kill cancer cells compared to chemotherapy or radiotherapy.

Typically, chemotherapy drugs are administered through vein and get inside cancer cell and prevent the cancer cell from dividing and lead the cancer cell to die. For example, most used chemotherapy Cisplatin is a very small chemical molecule which consists of a platinum atom, 2 chlorine atoms ,2 nitrogen atoms and 6 hydrogen atoms (Cl2H6N2Pt). It is so small and that is why it can go inside the cell and into the nucleous which contains DNA. DNA is a long chain of chemical molecules. When the cell divides into two cells, DNA needs to replicate itself. Cisplatin latches chemical molecles in DNA and prevents it from replicating , and that will lead the cell to die.

Radiation Therapy is to use high energy radiation to breaks chemical molecules of DNA, thus prevents from replicating and lead the cancer cell to die.

Immunotherapy kills cancer cells directly by utilizing our own immune system, especially T-Cells.
Scientists have found out that bladder cancer cells had acquired a skill of hiding from our immune system.
On T-cells, there is protein called PD-1 (Programmed Death-1). Bladder cancer cells are shown to have protein
called PD-L1(Programmed Death Ligand-1). When PD-1 of a T-cell touches with PD-L1 of a cancer cell, T-Cell does not attack the cancer cell. So, Keytruda by MERCK will hand cuffs the hands (PD-1) of the T-Cell and enable the T-Cell to attack the cancer cell. This is why Keytruda is called PD-1 inhibitor. Tecentriq by ROCHE hand cuffs the hand (PD-L1) so T-Cell attacks the cancer cell. So, Tecentriq is also called PD-L1 inhibitor. The size of chemical molecule of Keytruda is so big compared to Cisplatin. Keytruda is made of 6,534 carbon atoms + 10,004 hydrogen atoms + 1,716 nitrogen atoms+2,036 oxygen atoms and 46 sulfur atoms. In general more PD-L1 protein found in the tumor, the better efficacy the immunotherapy results.

Keytruda was approved for urothelial carcinoma which is the type of your partner's bladder cancer and proven to work extremely well to selected patients. I do not know exactly what kind of clinical trial program your partner has signed for as Keytruda had already been approved by FDA awhile ago for the treatment of the patients like your husband. But it is good that your partner has signed up for a clinical trial as Keytruda costs $100K- $150K per year.

A fellow I know did not respond well to Chemotherapy, and not to immunotherapy. But the target medicine called Balversa (erdafitinib) worked extremely well.

Our fingers crossed so your partner will respond well to the clinical trial.

Best wishes

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3 months 2 days ago #60030 by DonaldK

Wow - great news.

I think maybe some others might be able to address a couple of your concerns.

As always, if you do a bit of google searches for the meds and the trial and look at reputable sources (medical journals, hospital reports, etc.) and avoid social media type input (facebook, instagram, etc.) you will find a lot of info that is easily digestible.

Being involved in research is excellent because many things will be covered by the study. Be sure to speak openly with the research nurse whom you will become intimate with -their role is as a patient advocate (as are all the medical staff, but nurses roles are very patient focused).

There will be lots of info in the PCRC that your partner will be required to sign in order to be involved in the study. Look at the side effect closely - there will be three different levels listed (mild, moderate, and sever), as well as some statement about what actions the doctor is able to do to mitigate the side effects. I did not pay close enough attention to this detail when I started in on the BCG study I was involved with, and suffered with side-effects longer than I should have (my own fault).

Have faith in the science and the fact that the doctors are all there to help/heal your partner.

I know my local hospital has a whole host of support measures for cancer patients (nutrition, spiritual, psychological, social, holistic, etc.) get the doc to provide the referrals early and check them out - if you don't need them currently at least you will have the knowledge and already be on the record for these services.

Don't stop asking questions and seeking support - as with this pandemic YOU ARE NOT ALONE :)


Hi Grade T1 CIS

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3 months 2 days ago #60029 by Cariboy72
Hello again everyone!

I am continually grateful for all of the support and helpful information shared on this site! My partner and I finally had our first appointment with his oncologist post RC. The news we received was a bit different that what I received shortly after the surgery. My partner is actually stage 3 INVASIVE HIGH-GRADE UROTHELIAL CARCINOMA WITH FOCAL SQUAMOUS DIFFERENTIATION. According to the oncologist out of 20 lymph nodes, 6 were found to have cancer in them which was removed. His cancer didn't spread to other organs with the exception of the prostate which was classified as stage 2. Luckily, Kaiser currently has some clinical trials in progress and my partner was asked to participate which he accepted. It is for the drug Pembrolizumab which I understand has already been approved for other types of cancer. The oncologist shared with us stories of some of her patients who used the drug and saw remarkable results which certainly gave us some hope. However, I still have my fears about whether or not it will work. We were told that the chemotherapy didn't work as well as she hoped and I wondered if that is an indicator that any future treatments with the immunotherapy or possible radiation therapy would have the same outcome. Is it possible the type of cancer he has is simply more difficult to treat? A world of thanks!

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3 months 2 weeks ago #59976 by Cariboy72
Thank you so much for sharing your stories. They were both insightful and uplifting! His first appointment post RC will be next week. I will definitely apply your advice. A world of thanks to you all. Peace and blessings!

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3 months 3 weeks ago #59932 by joea73
Everyone cancer is different and every patient is different, so some treatment works for some group of patients
and some don't. The medical community does not know yet. The chemotherapy your husband had is called neoadjuvant (pre-surgery) chemotherapy. It was intended to kill not only of the bladder, metastasized cancer cells in different organs, and microscopic cancer cells still floating inside the body. Statistically, patients who had neoadjuvant chemotherapy has 5-10% overall survival advantage than those who do not have neoadjuvant chemotherapy. Not all patients can complete the neoadjuvant chemotherapy because of its side effect. So it was very good to hear that your husband was able to complete neoadjuvant chemotherapy. But some people respond well to neoadjuvant chemotherapy and some don't well. The chemo agents which are used vary according to the hospital though typical chemotherapy regimens were gemcitabine plus cisplatin or methotrexate, vinblastine, doxorubicin, and cisplatin (MVAC) (a study by the University of Florida in 2012). All chemo agents enter into cancer cells and intend to kill cancer cells by preventing the cell division, but their mechanisms are different. The combination of different chemo agents are meant to utilize different mechanisms to prevent the cell division of cancer cells. Usually, if one drug does not work, the same drug will not be used for the same patient. Also,though the completion rate of neoadjuvant chemotherapy has been shown to high (83%), adjuvant chemotherapy ( chemotherapy after radical cystectomy) completion rate is low (35%). It is less likely that your husband will go through 2nd chemotherapy.

Lymph nodes in the pelvis are the first location in which bladder cancer cells tend to migrate because of its proximity and the fact that lymphatic vessels and blood vessels are found in the connective tissue (lamina propria) of the bladder. It seems that the chemo agents of the neoadjuvant chemotherapy did not kill all cancer cells in lympho nodes. But they had removed all neighboring lymph-nodes. Given CT scan did not find any evidence of cancer in other organs, it is possible that your husband may not have cancer cells in his body.

So, it is a toss-up whether your hospital recommends puts your husband in more tight surveillance to check the recurrence more often and using other diagnoses or preempt more preventive treatment such as immunotherapy.

Immunotherapy drug Pembrolizumab sold under Keytruda by MERCK had been already approved for advanced bladder cancer to that platinum based chemotherapy such as cisplain did not work. So, it will not be used as clinical trials.

Anyway, you may want to clarify with your doctor whether your husband will be put on wait and see survallance or
more preventive treatment such as immunotherapy (There are so many different clinical trials based upon immunotherapy) intending to kill microscopic cancer cells possibly floating in the body. You also want to ask pros and cons (including the cost) for different options.

Also, there are new developments to check if the cancer cells are found in the blood. They mostly use a genomic sequencer and analyze the blood of your husband and check genes that are found in the cancer cells of our husband can be found in his blood. You may ask if your hospital will use this method.

Anyway, at this moment, after removing lymph-nodes even if some showed cancer cells, your husband is cancer free ..... until cancers return if they ever do.

Best wishes
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3 months 3 weeks ago #59920 by DonaldK

Although I am not an expert, I have a nursing background and am now a research scientist (different area than medicine). I would offer up that there is no pat answer to your question regard the spread to the lymph nodes. I think there are a number of options out there regarding both chemo and immuno therapies and frank discussions with your partner and the doctor/medical team can help provide some answers.

When I got diagnosed with a large bladder tumor, I wrote down a number of questions (after the initial shock wore off) to ask the doctor when I went back for my results.

I encourage you to have faith, to do some reading online (try and use trusted sites - medical journals, NIH, Cancer society, etc.) but not too much, and develop some questions to have when you return to the doctor.

We are with you in spirit and will provide as much support as possible.


Hi Grade T1 CIS
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