Newly diagnosed...

joyjoyjacobs

My husband was diagnosed 4 weeks ago with stage 4 bladder cancer. No "urinary" symtoms at all, just stomach pain that we spent a few months trying to figure out with diferent docs. Lymph node involvement shows up on the PET scan and possibly a spot on his hip. We have 2 rounds of chemo under our belt and Im just wondering what clinics are the best for treatment? Ive read about the clinics in Germany and Austria. Has anyone had luck with them? This is super scary...Help...?

kat2013

Just Amazed!

Hi Joy....Old post but I am writing in the off chance you still check. 1,552 people read this and NO replies??? I thought this was a support place! I have not gotten responses either. I know that a lot can happen in the amount of time since you posted....I hope things have gone as well as they can. If you read this, please respond. I am trying to reach out to people on here who have gotten no replies. I'm here! Blessings to you .....Kat

Alohagw

Bladder cancer

I am a six year bladder cancer survivor.  I choose integrated treatment at a clinic in Reno, NV. What I found most amazing is clinics in the US do not test your cancer cells against all the various chemo drugs.  The first thing the clinic did was draw blood and send it to Europe for analysis. The lab tested each chemo drug against my cancer cells, the results were then transmitted to me and my clinic. The standard protocol chemo was 35% effective against my cancer, meanwhile two other chemo's were over 80% effective.  I find it amazing if you have UTI, the test all the antibiotics against your infection, but they don't for cancer.

 

The clinic I choose required three weeks of treatments. Two days a week by IV 95g of vitamin C, two days per week low dose chemo, about 20% of a protocol dosage.  Your blood sugar is driven down a mid 50 number, the chemo is then applied laced with insulin. Cancer lives on sugar, the cancer cells were deprived of sugar then attack the insuli/chemo and die. One day per week you receive immune booster again by IV.  After three weeks, I returned home taking chemo pills once daily for four months.  I saw no one experience any side effects!  

The down side was/is it is expensive, insurance companies do not cover low dose treatments.  Everyone receiving treatment at the time was stage four, except me. You might research low dose chemo, educate yourself. There are a number of clinics around the country who provide low dose chemo, beware there are also scam artists too. The Reno clinic was managed by an Oncologist, voted the top Oncologist in Nevada, a visiting professor at the University of Nevada medical school.The firest doctor I saw wanted to remove my bladder. He said if I didn't I had a 20% chance of surviving five years.  He was wrong! Thankfully.

LisaG106

Alohagw said:

Bladder cancer

I am a six year bladder cancer survivor.  I choose integrated treatment at a clinic in Reno, NV. What I found most amazing is clinics in the US do not test your cancer cells against all the various chemo drugs.  The first thing the clinic did was draw blood and send it to Europe for analysis. The lab tested each chemo drug against my cancer cells, the results were then transmitted to me and my clinic. The standard protocol chemo was 35% effective against my cancer, meanwhile two other chemo's were over 80% effective.  I find it amazing if you have UTI, the test all the antibiotics against your infection, but they don't for cancer.

 

The clinic I choose required three weeks of treatments. Two days a week by IV 95g of vitamin C, two days per week low dose chemo, about 20% of a protocol dosage.  Your blood sugar is driven down a mid 50 number, the chemo is then applied laced with insulin. Cancer lives on sugar, the cancer cells were deprived of sugar then attack the insuli/chemo and die. One day per week you receive immune booster again by IV.  After three weeks, I returned home taking chemo pills once daily for four months.  I saw no one experience any side effects!  

The down side was/is it is expensive, insurance companies do not cover low dose treatments.  Everyone receiving treatment at the time was stage four, except me. You might research low dose chemo, educate yourself. There are a number of clinics around the country who provide low dose chemo, beware there are also scam artists too. The Reno clinic was managed by an Oncologist, voted the top Oncologist in Nevada, a visiting professor at the University of Nevada medical school.The firest doctor I saw wanted to remove my bladder. He said if I didn't I had a 20% chance of surviving five years.  He was wrong! Thankfully.

Thank you

Your post was quite interesting. I am going to look into this. My father in law was recently diagnosed and the prognosis is not good. Maybe 1 to 2 years. I am new here and trying to gather information for the family to make choices.

I appreciate your sharing your story.

 

Omena

kat2013 said:

Just Amazed!

Hi Joy....Old post but I am writing in the off chance you still check. 1,552 people read this and NO replies??? I thought this was a support place! I have not gotten responses either. I know that a lot can happen in the amount of time since you posted....I hope things have gone as well as they can. If you read this, please respond. I am trying to reach out to people on here who have gotten no replies. I'm here! Blessings to you .....Kat

bladder cancer

Hi Kat!  I'm brand new to this site.  Saw your post and am wondering how fast people respond.  My husband has been newly diagnsoed with bladder cancer so we're just beginng the journey.  I welcome any advice/support you can give.   

 

Omena

Alohagw said:

Bladder cancer

I am a six year bladder cancer survivor.  I choose integrated treatment at a clinic in Reno, NV. What I found most amazing is clinics in the US do not test your cancer cells against all the various chemo drugs.  The first thing the clinic did was draw blood and send it to Europe for analysis. The lab tested each chemo drug against my cancer cells, the results were then transmitted to me and my clinic. The standard protocol chemo was 35% effective against my cancer, meanwhile two other chemo's were over 80% effective.  I find it amazing if you have UTI, the test all the antibiotics against your infection, but they don't for cancer.

 

The clinic I choose required three weeks of treatments. Two days a week by IV 95g of vitamin C, two days per week low dose chemo, about 20% of a protocol dosage.  Your blood sugar is driven down a mid 50 number, the chemo is then applied laced with insulin. Cancer lives on sugar, the cancer cells were deprived of sugar then attack the insuli/chemo and die. One day per week you receive immune booster again by IV.  After three weeks, I returned home taking chemo pills once daily for four months.  I saw no one experience any side effects!  

The down side was/is it is expensive, insurance companies do not cover low dose treatments.  Everyone receiving treatment at the time was stage four, except me. You might research low dose chemo, educate yourself. There are a number of clinics around the country who provide low dose chemo, beware there are also scam artists too. The Reno clinic was managed by an Oncologist, voted the top Oncologist in Nevada, a visiting professor at the University of Nevada medical school.The firest doctor I saw wanted to remove my bladder. He said if I didn't I had a 20% chance of surviving five years.  He was wrong! Thankfully.

bladder cancer

Thank you, very informative.  My husband was just diagnosed following a cytoscopy.  We're currently waiting for biopsy results to find out the stage.  I want to get ahead of this and learn as much as possible about this type of cancer.  Going on this site is our first step.  Thanks for any advice/support.

Frank In Iowa

Omena said:

bladder cancer

Hi Kat!  I'm brand new to this site.  Saw your post and am wondering how fast people respond.  My husband has been newly diagnsoed with bladder cancer so we're just beginng the journey.  I welcome any advice/support you can give.   

 

bladder cancer

Hi Omena... Also brand new to this site. Was expecting dozens of comments relative to my cancer and I expected to join conversations. But it seems responses are few and slow. Anyhow, I was diagnosed with stage 4 bladder cancer in January 2018. Doctors gave me a very poor expectation. Had chemo for 6 months, until July, 2018. Then the scan spots began to fade, much to doctor's surprise. Then they disappeared altogether. In October, 2019, a spot reappeared, which they froze out (ablated). So now it's 4 months later and I expect new scans will be scheduled. I am very sorry for your husband's diagnosis. and hope maybe we might learn from one another and from other contacts we make. As you can see here, responses are scarce.   

Frank In Iowa

Alohagw said:

Bladder cancer

I am a six year bladder cancer survivor.  I choose integrated treatment at a clinic in Reno, NV. What I found most amazing is clinics in the US do not test your cancer cells against all the various chemo drugs.  The first thing the clinic did was draw blood and send it to Europe for analysis. The lab tested each chemo drug against my cancer cells, the results were then transmitted to me and my clinic. The standard protocol chemo was 35% effective against my cancer, meanwhile two other chemo's were over 80% effective.  I find it amazing if you have UTI, the test all the antibiotics against your infection, but they don't for cancer.

 

The clinic I choose required three weeks of treatments. Two days a week by IV 95g of vitamin C, two days per week low dose chemo, about 20% of a protocol dosage.  Your blood sugar is driven down a mid 50 number, the chemo is then applied laced with insulin. Cancer lives on sugar, the cancer cells were deprived of sugar then attack the insuli/chemo and die. One day per week you receive immune booster again by IV.  After three weeks, I returned home taking chemo pills once daily for four months.  I saw no one experience any side effects!  

The down side was/is it is expensive, insurance companies do not cover low dose treatments.  Everyone receiving treatment at the time was stage four, except me. You might research low dose chemo, educate yourself. There are a number of clinics around the country who provide low dose chemo, beware there are also scam artists too. The Reno clinic was managed by an Oncologist, voted the top Oncologist in Nevada, a visiting professor at the University of Nevada medical school.The firest doctor I saw wanted to remove my bladder. He said if I didn't I had a 20% chance of surviving five years.  He was wrong! Thankfully.

expensive

Hi Alonagw... Thank you so much for your information aout the clinic in Reno. Would you mind sharing your knowledge about the costs? You mentioned that this is expensive, and a little more information about this would be very helpful. Thanks, Alonagw!  

Omena

Frank In Iowa said:

bladder cancer

Hi Omena... Also brand new to this site. Was expecting dozens of comments relative to my cancer and I expected to join conversations. But it seems responses are few and slow. Anyhow, I was diagnosed with stage 4 bladder cancer in January 2018. Doctors gave me a very poor expectation. Had chemo for 6 months, until July, 2018. Then the scan spots began to fade, much to doctor's surprise. Then they disappeared altogether. In October, 2019, a spot reappeared, which they froze out (ablated). So now it's 4 months later and I expect new scans will be scheduled. I am very sorry for your husband's diagnosis. and hope maybe we might learn from one another and from other contacts we make. As you can see here, responses are scarce.   

Bladder cancer

Hi Frank,

Thanks for your response.  I appreciate any information you can give.   Sounds like your chemo has been effective.  If I may ask, how has your treatment impacted your quality of life?  Are you able to do the activities you want to?   I'll pray for your continued success.   We have not started treatment yet.  We meet with the doctor tomorrow to get the biopsy results to find out what stage he has and will proceed from there.  My husband's only symptom was blood in his urine.  He went in for a cystoscopy where cancer on the bladder wall was found.  So now we wait.....

Frank In Iowa

Omena said:

Bladder cancer

Hi Frank,

Thanks for your response.  I appreciate any information you can give.   Sounds like your chemo has been effective.  If I may ask, how has your treatment impacted your quality of life?  Are you able to do the activities you want to?   I'll pray for your continued success.   We have not started treatment yet.  We meet with the doctor tomorrow to get the biopsy results to find out what stage he has and will proceed from there.  My husband's only symptom was blood in his urine.  He went in for a cystoscopy where cancer on the bladder wall was found.  So now we wait.....

bladder cancer

Thank you for your information and comments, Omena. My chemo treatments lasted 6 months. During that time I was tired a lot and needed to rest during the day. Took a long time to carry groceries in from the car! Omena, your husband's discovery of cancer sounds similar to my own. First I observed blood in my urine. Then the cystoscopy found cancer on the bladder wall. They did scans and scraped the bladder out. They said they removed the cancer and would contact me in 6-8 months. But I had my doubts about the quality of their work, so I made an appointment at Mayo Clinic in Rochester, MN. They re-did the scans and informed me of stage 4 cancer and they began chemo 2 weeks later. My chemo treatments were effective for over a year, but they say my type of cancer is highly aggressive and it will come back, which it did last October. They removed it then and I feel fine now. 

I very much appreciate having this communuication with you, Omena. My hopes are that others with bladder cancer may join this discussion and share their own experiences so we may learn as much as possible. I need to let you know that much of my time is spent on being a caregiver for my wife, taking her to doctor's appointments and doing all the house chores, and writing a novel. Because of these responsibilities, I am not able to check this discussion board every day. There may be times when I am gone for a whole week for appointments, so if I am late in responding to you or to this discussion board, then I apologize in advance. My hopes are with you and your husband. I leave you with this thought I often have... if this cancer is going to get me, it won't be today or tomorrow and probably not next week either. I still have time to enjoy life and help others and make many of my own choices. So please, try and do all the things you and your husband can enjoy now. 

barehead

Omena said:

bladder cancer

Hi Kat!  I'm brand new to this site.  Saw your post and am wondering how fast people respond.  My husband has been newly diagnsoed with bladder cancer so we're just beginng the journey.  I welcome any advice/support you can give.   

 

Omena, found out my bladder cancer had returned after my annual cystoscopy in December. Had a TURBT in mid January, and came back with mixed results - TCC of T0 (decent), but Grade 3 (aggressive). The icing on the cake was then the addition of cancer in situ (CIS) for two non-primary biopsy sites.  Have completed four of six BCG treatments, but current one is on hold because I either have kidney issues or a raging UTI. Once this BCG course is completed, will go back on the table for and instensive cystectomy and more biopsiies in late April.

Support seems fairly ephemeral, and education is changing.  I am contacting ACS to see there if there are any BC support groups in my area, will see what turns up.  Many years ago I utilized the bladdercancerwebcafe site for lots of data, but it looks like it has been inactive for the past four years or so.  Just found the Smart Patients site, and am giving it a once over.

I think that education is critical to be able to ask the right questions.  Support is needed because the ability to discuss what you are going through makes it easier to deal with it, and only someone whom has been there can truly relate.  Along that line, I would be glad to talk with you or your husband regarding this journey. 

 

LaraB

Alohagw said:

Bladder cancer

I am a six year bladder cancer survivor.  I choose integrated treatment at a clinic in Reno, NV. What I found most amazing is clinics in the US do not test your cancer cells against all the various chemo drugs.  The first thing the clinic did was draw blood and send it to Europe for analysis. The lab tested each chemo drug against my cancer cells, the results were then transmitted to me and my clinic. The standard protocol chemo was 35% effective against my cancer, meanwhile two other chemo's were over 80% effective.  I find it amazing if you have UTI, the test all the antibiotics against your infection, but they don't for cancer.

 

The clinic I choose required three weeks of treatments. Two days a week by IV 95g of vitamin C, two days per week low dose chemo, about 20% of a protocol dosage.  Your blood sugar is driven down a mid 50 number, the chemo is then applied laced with insulin. Cancer lives on sugar, the cancer cells were deprived of sugar then attack the insuli/chemo and die. One day per week you receive immune booster again by IV.  After three weeks, I returned home taking chemo pills once daily for four months.  I saw no one experience any side effects!  

The down side was/is it is expensive, insurance companies do not cover low dose treatments.  Everyone receiving treatment at the time was stage four, except me. You might research low dose chemo, educate yourself. There are a number of clinics around the country who provide low dose chemo, beware there are also scam artists too. The Reno clinic was managed by an Oncologist, voted the top Oncologist in Nevada, a visiting professor at the University of Nevada medical school.The firest doctor I saw wanted to remove my bladder. He said if I didn't I had a 20% chance of surviving five years.  He was wrong! Thankfully.

Alohagw, thanks so much for

Alohagw, thanks so much for sharing your experience! May I ask what stage was your cancer and what is your approximate age? My mother just got diagnosed with stage 3, and we think that a bladder removal would be too invasive for her.