Information about bladder removal

Cynthia
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9 years 4 months ago #47635 by Cynthia

Replied by Cynthia on topic Information about bladder removal

Fighterm, When giving the link that I gave on our website the intent as with all things we do here is to allow people to be better medical consumers not to find a list of clinical trials. Recruiting for medical trials is very competitive and it is important to make sure that anyone contemplating be parting of one understands how they work and if being part of one is in ones best interest. For anyone considering taking part in one knowing the basics is very important. What is the difference between a phase 1 and a phase 3 trial. What are they advantages for me if I take part in this trial over conventional treatment?

We understand your enthusiasm for some of the research that is ongoing and it is shared and watched on a daily basis by many of us here. Over the years we have seen many things that have offered the promise of being the holy grail of bladder cancer. Clinical trials are a very important tool in proving the validity of new treatments and drugs. Please understand if or when someone takes part in a clinical trial is not anyones business but the person making the decision. What our goal would be is to help someone have enough information to make an informed decision.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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fighterm

9 years 4 months ago #47629 by fighterm

Replied by fighterm on topic Information about bladder removal

I want to give some explanation about TIL (Tumor-infiltrating Lymphocytes) method that Dr. Rosenberg develops. I am a biochemist, so I know some of this stuff. When you use BCG what it does it stimulates production of CD4 and CD8 T lymphocytes that fight cancer cells. But they are not very specific. Dr. Rosenberg finds more specific CD8 T lymphocytes inside the tumor, but their number is not enough to kill all cancer cells. He then multiplies these specific CD8 T lymphocytes in the laboratory (makes billions of them), but before he puts them back into you he eliminates all other non-specific T lymphocytes. It's called depleting regiment. Now all injected specific CD8 T lymphocytes kill all remaining cancer cells. And what's more, they will remember their target for life. Like in immunization. Immune system remembers the dangerous microbes for life. Cancer cell is like a microbe. I hope Dr. Rosenberg will offer TIL for bladder cancer soon.

By the way, the fact that the tumor infiltrating lymphocytes fight cancer cells, but are overwhelmed by fast growing cancer cells speaks also about the usefulness of the PD-L1 blockade. PD-L1 is expressed on the surface of cancer cells and disables T cells from killing cancer cells. If a big number of T cells is disabled then you need to make billions of them to eliminate all cancer cells. I think these both methods are complementary as the goal is the same to have more T cells fight cancer.

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fighterm

9 years 4 months ago #47627 by fighterm

Replied by fighterm on topic Information about bladder removal

Cynthia,
You gave the link to so many trials that it's easy to drown in them. I just want to point out that the new trials are very different from the old ones that you tried years ago. I gave mostly the trials based on the latest discoveries in cancer research. Also want to let you all know that Dr. Carl June and Dr. Steven Rosenberg are the two top Drs/researchers in T cell therapies (CAR T cells and TIL). I saw a trial by Dr Rosenberg in your list, but it applies only to digestive tract cancers (A Phase II Study Using Short-Term Cultured, CD8+-Enriched Autologous Tumor-infiltrating Lymphocytes Following a Lymphocyte Depleting Regimen in Metastatic Digestive Tract Cancers).

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badblad
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9 years 4 months ago #47626 by badblad

Replied by badblad on topic Information about bladder removal

Cynthia,

Thanks so much for your advice. I have read your reply several times. The Indiana has worked for you for some time and that testimonial is encouraging. Food for thought regarding saving bladder or...Just really hate to give up this "normal life". The alternative is not good. This might be a curveball thrown my way that I will have to deal with.

It is so nice to get prompt replies from so many people. It helps.

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Cynthia
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9 years 4 months ago - 9 years 4 months ago #47625 by Cynthia

Replied by Cynthia on topic Information about bladder removal

Badblad,

Now that Sara Anne has given away all of my secrets I imagine I shouldn't have much to say but I will not let that stop me.

I have an Indiana and it has served me well since 06. No band aide needed my stoma is in my naval and another one of my secrets. As for the different types of diversion the neo and Indiana have to be trained by that I mean you will be on an emptying schedule and will add time each week until they are trained. Most of us can tell when they are full I feel a sensation of fullness it is not the same as having a full bladder but I know when I have to go. Also I know that two glasses of tea mean I need to make a stop soon, somethings do not change. There are pros and cons with all of the diversions and what you would be offered would depend on the location of your cancer and the skill set of your surgeon.

As for a clinical trial make sure that is what serves you the best. Many times the standard treatment is the best answer. Is your main goal to save the bladder or your life? You may not face that question but if you are advised the bladder needs to go and you are investigating clinical trials to save it it is a question that needs to be contemplated. There are many interesting things under investigation and we all hope they will find answers but they are still in the trial and error stage. I personally have taken part in two clinical trials so I know from the school of hard knocks that you have to do your homework and ask the hard questions. Also be aware not all clinical trials are offered at all locations they may only be offered in a few locations world wide. Here is a link to our clinical trial page for further reading on the subject.

bladdercancersupport.org/bladder-cancer-help/information/clinical-trials

I hope this helps you a bit and I know you will have a million questions know we may not have all the answers but we are here for you.

Last edit: 9 years 4 months ago by Cynthia.

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fighterm

9 years 4 months ago #47624 by fighterm

Replied by fighterm on topic Information about bladder removal

Breeze, sorry for confusion. I forgot that it's your thread. But you might find the information for clinical trials useful, too. I read that for 30 years there were no new good drugs for BC. But now the situation is rapidly changing due to big breakthroughs in other cancers, specifically blood cancers (lymphoma/leukemia). There will be soon some other methods offered for BC (in addition to that list) like CAR T cell therapy. I am watching all relevant research in this area. One target on the bladder cancer cells was identified recently as a viable target for car t cell therapy. The target was also present on some other cancer cells. I understood that pancreatic cancer and brain cancer (gliomas) have the priority because those people have nothing nothing at all. So two major cancer centers that develop the car t cell therapy are offering those patients clinical trials.

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