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oldmottin
@oldmottin

Posts: 2
Joined: Aug 17, 2011

Bladder cancer

Posted by @oldmottin, Aug 18, 2011

AT 85 AM WONDERING IF I CAN
TAKE THE PAIN! I HAVE BEEN ON
CHRONIC PAIN MEDICINES FOR
5 TO 10 YEARS> I AM A WIMP AND
WISH I HAVE THE GUTS TO CANCEL BLADDER REMOVAL!

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conchgma
@conchgma

Posts: 2
Joined: Nov 16, 2011
Posted by @conchgma, Nov 16, 2011

I see this post was from back in Aug. Did you have the surgery and if so, how are you doing? My husband has bladder cancer also.


Mickey Hoff
@marylu

Posts: 2
Joined: Sep 27, 2014
Posted by @marylu, Sep 27, 2014

just found out that I have bladder cancer. Have to return back in two weeks to have it restaged. By then, I hope to have some info. on treatments and their outcomes


boomba
@boomba

Posts: 8
Joined: Mar 23, 2016
Posted by @boomba, Apr 26, 2016

Mary….I’m into a weekly bladder chemo wash or Bacillus calmette-guerin (BCG) therapy. My GP has now recommended that I get a second opinion from John Hopkins, which is close, I live in Annapolis, Maryland. My only problem now is fatigue. I do not have any pain.

This morning’s Washington Post (April 26, 2016) has an extensive story on why getting a primary or second opinion from a prominent medical institution, such as Mayo Clinic or Johns Hopkins, is very important.

If you’re interested I’ll keep you advised as to my progress.


Colleen Young, Connect Director
@colleenyoung

Posts: 3533
Joined: Jul 23, 2014
Posted by @colleenyoung, Apr 26, 2016

@boomba I think I found the article from the Washington Post that you referenced.

Do you need complex surgery? Some doctors may not have much practice.

https://www.washingtonpost.com/national/health-science/do-you-need-complex-surgery-some-doctor-may-not-have-much-practice/2016/04/25/186a8ce8-e30b-11e5-846c-10191d1fc4ec_story.html


boomba
@boomba

Posts: 8
Joined: Mar 23, 2016
Posted by @boomba, Mar 23, 2016

Bladder cancer chemo….what side effects?


Colleen Young, Connect Director
@colleenyoung

Posts: 3533
Joined: Jul 23, 2014
Posted by @colleenyoung, Mar 23, 2016

Hi @boomba, welcome to Connect.
I moved your message to this thread so that you can hopefully connect with other members like @marylu, @conchgma and @conchgma who also have experience with bladder cancer.

Boomba, chemo for bladder cancer can be given in a couple of different ways, and different drugs may be used. See this information from the American Cancer Society http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-chemotherapy

Do you know what type of chemo you will be getting?

Liked by boomba


boomba
@boomba

Posts: 8
Joined: Mar 23, 2016
Posted by @boomba, Mar 23, 2016

Bacillus calmette-guerib (
BCG)


Mickey Hoff
@marylu

Posts: 2
Joined: Sep 27, 2014
Posted by @marylu, Mar 23, 2016

 The day I found out about my conditions,  a dear friend was told that he needed his removed.   We see each other all the time and he is doi g great. If you wish, I will ask him if he is willing to talk to you.


Colleen Young, Connect Director
@colleenyoung

Posts: 3533
Joined: Jul 23, 2014
Posted by @colleenyoung, Mar 23, 2016

Hi @marylu, that would be great to invite your friend to Connect. Thank you.

@boomba, I found out a bit about the side effects of BCG from NIH.
BCG side effects include:
– Flu-like symptoms
– Severe allergic reaction
– Urinary side effects
– Pain or burning sensation during urination
– Increased urgency or frequency of urination
– Blood in the urine

You can find out more about biological therapies, including BCG in this fact sheet http://www.cancer.gov/about-cancer/treatment/types/immunotherapy/bio-therapies-fact-sheet

When do you start treatment?


boomba
@boomba

Posts: 8
Joined: Mar 23, 2016
Posted by @boomba, May 7, 2016

Just finished 6 weeks of Chemo Wash…..went to Johns Hopkins for second opinion……they said BCG probably will have little or no effect on the bladder cancer….going back to JH in two weeks. They will do an inside look to see what’s going on.


rwcccone
@rwcccone

Posts: 4
Joined: Apr 25, 2016
Posted by @rwcccone, May 7, 2016

Hate to be a jerk,but many here are new to this issue,this bladder
cancer,treatments,etc. so please stop using initials for items.
Exactly what is BCG…Bladder Cancer…G? Help…Hugs…o


Colleen Young, Connect Director
@colleenyoung

Posts: 3533
Joined: Jul 23, 2014
Posted by @colleenyoung, May 9, 2016

Thanks for the update @boomba. By chemo wash do you mean intravesical therapy? http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-intravesical-therapy

How are you feeling after the 6 weeks of treatment?


boomba
@boomba

Posts: 8
Joined: Mar 23, 2016
Posted by @boomba, May 9, 2016

I feel fine…..just a lot of fatigue…..next step is going to Johns Hopkins for a second opinion…..I live in Annapolis, MD so it is only 45 minutes away.


rwcccone
@rwcccone

Posts: 4
Joined: Apr 25, 2016
Posted by @rwcccone, Apr 25, 2016

Six plus months,and nothing’s been done to date. I am now waiting an appointment on May 2,2016 with Mayo Urology Dept. currently my rt. Kidney has shut down,my left kidney has tubes,and a stent trying to keep it flowing. I was misdiagnosed back in 12/20/2015,as having nothing more than a bruised bladder,then they said no cancer present. Apprx. One month later,after three requests they recheck their diagnosis,and they refusing to,tho I was an prior bladder cancer survivor,they then diagnosed me with highly invasive bladder cancer,with muscles involved,and since I’ve had nothing but one error after another. I’m wondering just how long can the body go without treatment for this. A PET scan recently done,last week,shows the cancer has reached the bone marrow,and still no real plans have been made for treatment. Am I just being left to die? We’re not looking for promises,etc.,just some understanding,some outside thoughts. I’m 65 yrs. old! Otherwise,I was in good health until this. Thank you,Rodger


Colleen Young, Connect Director
@colleenyoung

Posts: 3533
Joined: Jul 23, 2014
Posted by @colleenyoung, Apr 25, 2016

Welcome to Connect, Rodger. I’m really glad you reached out.
I moved your message to this discussion thread about bladder cancer in the Cancer group to connect you with @marylu, @boomba and others.

I’d also like to introduce you to Sheryl M. Ness @smness. Sheryl is a patient educator at the Mayo Clinic in Rochester. She and her team in the Cancer Education Center help inform and educate patients, families and caregivers about services and resources to help them through the cancer journey. The Center is also a beautiful, calming place to relax between appointments. http://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education/minnesota

Rodger, have you visited the Cancer Education Center in Rochester before? It’s on the main floor of the Gonda building.

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