CR 811: Q&A with other BC patients

Each week I receive an email with new questions regarding bladder cancer that are posted on the BCAN section of inspire.com. I sift through the questions and comment on topics on which I have some experience and where I think my post may help. Here is a sample of the recent questions and answers:

Any Insight for Clinical trial study 

Stage 4 UC. The bladder cancer is now in my left lung. I meet with trial manager Monday Sept. 11 to see if I'm a candidate. 3 arms to trial (due to 1 kidney here are drugs I'm eligible for).
Arm A: Atezolizumab + carboplatin ,gemcitabine
Arm B: Atezolizumb monotherapy
Arm C: Plecebo + carboplatin, gemcitabine
Do any of you have any insight on this trial?
On a different note, Is there any outcome advantage for immunotherapy versus chemotherapy?
I Look forward to your responses.

My response:

Trimodal therapy (arm A) is very promising, but your other health issues are a concern. Atezo alone (arm B) would have the fewest side effects, and most likely to help with your mets. Chemo only (arm C) is the standard of care. With lung mets and your comorbidities, I'd push for the immunotherapy, and have chemo only if your docs thought I could tolerate it well. But I'm not a doctor so if they tell you anything different, listen to them. Good luck and God bless, Ken

Opdivo (nivolumab) and yervoy (ipilimumab) clinical trial

I signed consent forms today for a clinical trial with MSKCC, my current doctors. I will receive opdivo and yervoy every 3weeks for four doses and then only opdivo every 2 weeks for two years unless toxicity occurs or if cancer progresses.
Liver biopsy, protocol labs and tests tomorrow.
I told him I wanted an aggressive and out of the box treatment, he said this is it.
Hopefully I'll do okay with the first four doses. Wish me luck. I'm very nervous about side effects.
Has anyone done a two immunotherapy clinical trial?
Appreciate any info

My response:

I enrolled in a precursor to your trial, and was randomized into the nivolumab only arm. I got 46 doses and have had a complete response - no evidence of disease -- that's ongoing and has lasted for more than two years. I've detailed my exeperince on my blog at https://kwbcancerblog.blogspot.com/ (start in 2/2015).

As I'm sure you're aware, adding ipi into the mix increases the risk of class 3-4 side effects. Create a baseline chart of your physical health now - including bowel movements, skin condition, fatigue (how many minutes can you do x), and continue to keep up that chart while you are on the trial.

I just returned from the 2017 BCAN Think Tank, and heard how combination therapy of two, three, or more drugs is the next frontier for for mets BC. It pays to keep current with the research, because treatments are changing so quickly!

Good luck and God bless, Ken

Question about lymph node involvement and radical cystectomy

My husband was diagnosed a few weeks ago with stage IV bladder cancer (invasive high-grade urothelial carcinoma) which has spread to his prostate and three of the pelvic lymph nodes. His oncologist told us that since the cancer was already in the lymph system, he was not a good candidate for surgery to remove his bladder, prostate and lymph nodes because the cancer "seeds" have likely already spread. However, the urologist that we were referred to after his diagnosis felt that surgery might still be in his future. We are going to seek a second opinion, but I am just curious to hear if other men diagnosed at stage IV had the bladder/prostate/lymph node removal surgery done?

My response:

Gary Steinberg at U. Chicago did my RC and neo after I was Dx'd with cancer in my nodes. He was pulling lymph nodes like weeds, and got 62 of them. 12 were positive. That was over 5 years ago and I'm still going strong, although it's been a roller coaster. Details are on my blog at https://kwbcancerblog.blogspot.com. The takeaway is that there is hope for your husband. Get to an NCI center -- Mayo, or Gary at U. Chicago. Don't delay therapy. Consider immunotherapy now, or have the RC then immediate immunotherapy. It's possible to live for many years despite lymphatic metastatic cancer, but you and your husband need to be proactive! PM me if you or your husband want to talk off-line. Good luck and God bless, Ken.

Teqcentric vs Keytruda?

I've been stage 4 since my RC in 2014 and finding several lymph nodes positive for bladder cancer. I've been getting regular follow-up scans that show very small nodules, some in my lungs, and swollen lymph nodes in the groin, but I've received no treatment and generally feel very good, energetic, and a lack of symptoms. However, these small nodules are showing "slow but steady progression" and I've recently had some deep pain that may/may not be related to BC. Talking to my oncologist about the drugs currently approved for immunotherapy, he said Kaiser would likely use either Teqcentric or Keytruda, and that they use Keytruda quite a bit there for other cancers, so he's very familiar with it. Hence my question: is there any basis to prefer one of these to the other? I didn't have a very effective response to gem/cis chemo in 2014, and it felt like it took a year to recover, but it seems to me that if I need treatment, it would make more sense to start with immunotherapy. Any thoughts?

My response:

I vote for getting on an immunotherapy drug. Which one isn't as important as the fact that you're on one. They work in a similar way, so don't get too hung up on choosing the "correct" drug. As for me, I had 46 rounds of nivolumab (Opdivo) and had a complete response, which is ongoing for more than 2 years. Details are on my blog at https://kwbcancerblog.blogspot.com. A recent journal article about immunotherapy is "Checkpoint inhibitors: the new treatment paradigm for urothelial bladder cancer" at https://www.ncbi.nlm.nih.gov/pubmed/28864844 (Med Oncol (2017) 34:170). The bottom line is that immunotherapy is changing the way mets BC is treated, and everyone with mets should consider getting one of those therapies.

Looking for neobladder surgeon in Chicago area

I'm looking for a surgeon in the Chicago area to conduct a radical cystectomy with neobladder diversion and currently have this shortlist:
Dr. Gary Steinberg (U of Chicago)
Dr. Norm Smith (U of Chicago)
Dr. Marcus Quek (Loyola)
Do you have any recommendations for choosing among them?  

My response:

Gary Steinberg did mine in May 2012 and I'm still alive despite 12 positive nodes. Details are on my blog at https://kwbcancerblog.blogspot.com (go to May 2012). I can't speak about the other two. Go with your gut (so to speak . . . )

Metastatic Bladder Cancer

Hi. My husband is 43 and has metastatic bladder cancer. I need some advice. He was diagnosed last October with stage 3 muscle invasive bladder cancer, went through 6 months of preoperative chemo, and then this July had his bladder removed and a neobladder placed. His cancer spread to his lung and liver and is now undergoing Immunotherapy (Opdivo) while still recovering from the neobladder surgery. Is there anyone out there possibly going through the same thing? He has been in and out of the hospital ever since the surgery for either infections or constipation issues. Any advice on foods your eating, how much liquids you're drinking, tips?
Thanks so much

My response:

I'm 5+ years post neo and stage IV. The recovery from a neo is made harder with the knowledge of mets. I've blogged about my journey at https://kwbcancerblog.blogspot.com. Your husband is getting the right immunotherapy and should know in the next couple of months if it is working, but it sounds like he may need some counseling to help realize that his life isn't over yet. Your hospital may have oncology social workers. Get some one-on-one with a counselor for him, and for you too. Being a caregiver is hard work (or so my wife says). Even if he won't go, you should. Hang in there! Ken

Stage 4 bladder cancer

My husband has bladder cancer. He told his doctor he saw a little blood in his urine only 2 or 3 times with in 2 years and the doctor said without checking that it's a uti and it's common for men in there 60s. Finally was told go see urologist who told him he was loaded with tumors in bladder. Did bcg treatments which did nothing. The tumor continued to multiply. It's an aggressive cancer. Went to a doctor who specializes in bladder removal. Dr said cancer is contained in bladder. Had his bladder and bunch lymph nodes removed and a new bladder made. Doctor said he is cancer free and a survivor will live 20 more years. After about a year doctor said you need to go see another dr you have 5 spots in your lungs. Come to find out he had been watching them on all the routine tests. Went to Dana-Farber and had pet scan. He has approximately 35 plus tumors in BOTH lungs, his kidney was lit up like a spot light and he had 2 spots behind his stomach. Dr said he has a year to live. Talk about SHOCK. He was treated with gemzar and cisplatin for 6 months 2 weeks on one week off until he told the dr he would rather be dead due to the awful side effects. His tumor did shrink a little from it but his body just couldn't take it any more. We asked for immuno therapy tecentriq recently approved for bladder cancer. Its been three months of treatment once a week for half an hour and scan shows a little growth of tumor but they are still smaller than at first. Side effects are nothing compared to chemo. He does have neuropathy in hands and feet. His feet kill but he just keeps going. He is being treated for another 3 months and will have another scan. If they grow he will have to try chemo again.😞 We are praying this immuno therapy works. A good word of advise would be when diagnosed with cancer go to a good cancer specialist. We didn't realize that and my husband is paying the price.

My response:

I've been stage IV for more than 5 years. Two different types of chemo helped slow the growth, then a clinical trial with Opdivo wiped out all my tumors. I've been cancer-free for more than 2 years. Details are on my blog (https://kwbcancerblog.blogspot.com). Immunotherapy doesn't work for everyone, but it's the best option out there for those with Stage IV. New combination therapies are being tested, and some show great promise. Everyone with Stage IV should get to an NCI hospital and get educated on all the options. Treatments are changing quickly, and you need to be working with doctors who are current on all of the most recent therapies. It's especially important for patients to be proactive and push their medical teams for the best options.

From Stage 4 to All Clear...What now?

Hello, I'm glad to have found this site. My father is 62 years old and bladder cancer has been in our lives for the past 5 years. He was first diagnosed about 5 years ago with a tumor taking up 3/4 of his bladder that was pushing against his bladder walls and there was concern that it was nearly outside of the bladder. Through chemotherapy the tumor shrunk significantly, and he was able to undergo surgery and have his bladder removed, and a neobladder put in place. This past February, however, the doctors detected a large tumor in his pelvic cavity. He was diagnosed with stage 4 cancer and underwent chemotherapy again. As of his last scan, he is "cancer free", but we are all in a state of disbelief. It is great news, but seems a bit too good to be true. His doctor says that he believes in the scans, and of course insurance is not going to pay for another MRI, but I'm wondering whether this is something others would want to investigate more? We are grateful and hope the "all clear" stands, as it is the best news we could have hoped for, but it is hard to go from a frightening diagnosis to that so quickly. I guess I'm interested in hearing what next steps others would take to feel more confident/secure in the assessment. Any insight would be much appreciated. Thank you!

My response:

I've been Stage IV for more than 5 years, and cancer-free for more than 2 years. I still have CT scans every 12 weeks and expect that will continue for some time. My doctors expect my cancer to come back at some point, since BC is such a tenacious beast and "cures" are virtually unknown. So yes, keep up the the scans (CT's with contrast generally are better than MRI's for finding mets). Insurance should cover scans every 3 months, since that is the the standard of care. If your dad's cancer does come back, then immunotherapy likely would be the next therapy. It's much easier on the system than chemo, and has a better success rate. If that fails, don't despair -- there are other options. Combination therapies are now being tested and some early indications are suggesting success rates of up to 80%. Best of luck to your dad and you in the future, Ken.

RC 8-26-17 SetBack

Hi all, RC at MSKCC went as planned this past Saturday. Still in the hospital walking and waiting to pass gas. The good news is I receved a Neobladder which was my first choice. The very bad news is there was cancer found in one of my lymph nodes and all the rest are in pathology being analyzed. I have been told I will need chemo but haven't been told much else. I know this greatly reduces my survival chances compared to non invasive bladder cancer which I was repeatedly told was my current state. Decided to do this surgery for the "definite cure" but now looks like I did the painful surgery for nothing. Very scared and wife is devastated.

My response:

I was in the same place you were in back in May 2012. RE with neo, 12 positive nodes. Don't pay attention to the old statistics; they predate immunotherapy. Know that there are very good options available if and when your mets start to grow. Details of my journey are on my blog (https://kwbcancerblog.blogspot.com). Educate yourself on the different options, including checkpoint inhibitors and combination therapies. I learned at this month's BCAN Think Tank that some new combination trials are reporting an 80% response rate. Be proactive and keep up the fight. Good luck and God bless, Ken

Mixed response to GemCarbo
 My very first post here, and I really look forward to this brave and supportive community's opinions and experiences. My mum was diagnosed with high grade bladder cancer, mets in both lungs, liver and hip and provide pelvis bones.. we only found out because of worsening pain in the hips area.. since she had radiotherapy (10 sessions), and was started on GemCarbo. After three cycles, CT showed good improvement in lungs, mets clean in liver, but her hip bone mets got worse and progressed and she now requires new radiotherapy. Has anyone had mixed response after 3 first cycles of GemCarbo?.. did you change the chemotherapy?.. or were you advised to see if bones will respond at a later stage (can bone mets respond later compared to soft tissues mets?!) Quite scared as I heard if bladder cancer didn't respond to first line treatment, prognosis is quite poor...  And words or hope or reality please!

My response:

Please look into immunotherapy. I'm stage IV and it's saved my life. Details are on my blog (https://kwbcancerblog.blogspot.com). In addition, clinical trials are being tried on combination therapies of different immunotherapy and chemotherapy drugs. Some early trails have had a response rate of up to 80% -- and that's in patients that have failed first line chemotherapy. Details are in my posts regarding this month's BCAN Think Tank. If your mom is not at an NCI Center, please have her go there. Good luck and God bless, Ken

Bladder removal

My husband is scheduled to have his bladder removed next month. After having scopes followed by BCG treatments afterwards, that stubborn cancer has come back, always as carcinoma not an actual attached tumor with penetration to the wall. Because this has gone on for almost 2 yrs. every Dr. we have been to says to remove the bladder. The cancer has made it into the uretha past the prostate, it'll all need to go. Dr. doesn't know if he will be eligible for the neobladder, which is what we were cautiously hoping for. Being a diesel/heavy equipment mechanic, doing this type of work with an external bag sounds difficult. Although we have heard negatives about the neo. also, such as it is only successful for 5 yrs or less and you can't lift heavy objects or it can rupture or there are many more complications because of it. We have to let the Dr. know if we want to go that route prior to surgery even though the Dr won't know if he can do it until the surgery is underway. We aren't sure of anything anymore. He just turned 60 and can't afford to retire w/o SocSec and Medi-care. Any info would be helpful.

My response:

Remember that the point of the bladder removal is stop the cancer. You're asking questions about the side effects of the therapy, which is like worrying about the tail instead of the dog. When I had my RC at age 49, I worried about that more than the cancer. But tens of thousands of people have done just fine with all of the diversions. All involve an adjustment, but it's not as big of a deal as it appears to be. The important think is that your doctor gets clear margins and the cancer is gone.

As it turned out, my cancer had spread to my nodes (12 positive), so I've been Stage IV for more than 5 years. I played cancer whack-a-mole for several years until I got into an immunotherapy clinical trial and was fortunate enough to have a complete response. Details are on my blog at https://kwbcancerblog.blogspot.com. if you think of your husband's cancer as a chronic disease to be managed instead of an acute phase, it will help you realize you're in a marathon, not a sprint. And as a caregiver, you need to ensure that you're taking care of yourself, too. Get a strong support system around you This forum and BCAN support groups can help. Good luck and God bless, Ken.

CT Urogram Drinking Contrast

I'm having my first CT Urogram tomorrow and I'm told that I'll be drinking contrast an hour before test. I see a lot about IV contrast but not drinking it. Is drinking as good as IV?

My response:

I've had more than two dozen CT scans in my nearly 6 year journey with mets BC. All involved IV contrast; about half also had me drink beforehand. The drink has a radioactive isotope, usually barium, that helps the CT scan get a much better imagery of your gut. The IV contrast is transmitted through your bloodstream and doesn't allow the gut to be viewed as well. Both types of contrast tax the kidneys, so it's important to drink several liters of Diet Coke or other fluid of your choice after each scan. If you have concerns about drinking the contrast, speak to your doctor or radiologist well BEFORE you have the scan. If you choose to not drink the contrast, the scan likely will still proceed, but the imagery won't be as good.

Day 1 with a Neobladder

Dr Bivalacqua performed the RC yesterday morning 9/11/17. 4.5 hour surgery. He said everything went perfect. Bladder out, neobladder in. It feels like I've done 1000 sit-ups. Ugh! They have not allowed me to walk yet since my blood pressure is low and they are afraid I could pass out. Bummer? I feel pretty good though. Now the fun begins.  

My response:

Here's to hoping you pass gas soon! My written neo recovery instructions said to avoid roughage like lettuce or high fiber foods, and to eat easy to digest foods like cake and pies. That was in May 2012 and no one ever told me to stop following doctor's orders, and I'm doing my best to comply! Good luck and God bless, Ken