Forum

× click new topic to begin your post

An update from Mary

2 years 10 months ago #52020 by GKLINE
This is Not at all what we want for you.
Bc is a bitchy little thing and is always finding a new way to mess with us.
I am truly sorry for your present situation and hope like hell that the therapy is successful.

George
You can vent here as much as you like

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
The following user(s) said Thank You: dani

Please Log in or Create an account to join the conversation.

2 years 10 months ago #52015 by sara.anne
Oh, that is definitely NOT what we wanted to hear. But all of KNOW that you are one of the 20%.

Will keep thinking really good thoughts

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

2 years 10 months ago #52014 by cancersucksbigtime
Hi,
I have just been told I have metastatic bladder cancer. The oncologist found uretheal cells in an abdominal lymph node.
So I started treatment last Friday that will continue every three weeks for as long as I tolerate it and/or it stops working.
The doctor told me that it works in only 20% of the patients. So they aren't very good odds, are they.
This drug is called tecentriq. I just figure I'll continue to hear bad news until my last breath.
How can I live my life looking at this treatment every three weeks. How invasive that is on our lifestyle. We travel, sometimes for several weeks.
We are driving our daughter's car out to Oakland, CA for Thanksgiving. How do I do that with being tied to an every three week treatment schedule?
I feel like my life is not my own, and probably this is an end game scenario.
In the 80% of patients who do not respond to this therapy, prognosis is 12 - 18 month survival rate.
How do I live with this onus hanging over me? How do I?

Please Log in or Create an account to join the conversation.

3 years 1 week ago #51720 by cancersucksbigtime
Hey George,

I certainly appreciate your input and your good wishes. I guess someday I will not get so upset, but not yet.

I'm going to see a new therapist who is a social worker at Fox Chase Cancer Center. I already know her from the support groups she holds once a month, and she is a sweetheart. I think talking to someone who is familiar with cancer patients will be a big step forward in my emotional healing.

If I come across any good ideas to stop leakage in bed, I will be sure to let you know. I myself am investigating some specialized undies that will hopefully prevent leakage during intimacy.

Again, thanks for your friendship with me in this oh so fun journey!!

Mary

Please Log in or Create an account to join the conversation.

3 years 1 week ago #51710 by GKLINE
Hello Mary
I am glad to hear from you! Hearing your story is a flashback to many of us here.
After all you have been through, You may feel emotional about yout new normal.
I have to admit that I beat myself up about the "new Normal" shortly after recovery.
So, where do we go from here?
As time goes by, you will get used to the changes in your life caused by this disease.
After 8 years I still suffer with nightime leakage. At first I was devastated by this. Now, it is just a fact of life. My wife and I are on a never ending search for the best control method and as of yet, we haven't found the perfect item.

Thanks for giving us an update. We think about each and every person who visits us and then resumes their life after cancer.

Good luck
George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
The following user(s) said Thank You: dani

Please Log in or Create an account to join the conversation.

3 years 1 week ago - 3 years 1 week ago #51686 by cancersucksbigtime
Hello Group!

I haven't checked in for a few months, so I though I'd stop by to say hi.

I am still sort of struggling with my "new normal". I've had a few setbacks, none of which has been terrible, just very upsetting to me. A few nighttime leaks in bed, YUCK, a few leaks here and there. Don't know why any of them happened, they just did. Anytime something like this comes along so unexpectedly, I get very emotional and angry. And this is now five months post-op.

I also managed to break two different bones in the same foot. Again, no idea how that happened. Ain't life grand??

I'll be having more scans for the surgeon and oncologist in early September, and I'll be anxious once again to hear the results. Right now, this is an every three months deal, and I am hoping that if all is well with this third scan, maybe they'll push testing back to every six months. Fingers and eyes crossed!!

Hope everyone is enjoying these summer months. Despite all my ranting and raving, I am having a good summer.

Best wishes to all,

Mary
The following user(s) said Thank You: dani

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1204 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 2 Latest User: Ohwon
Yesterday Total Opened: 1 Yesterday Total Answered: 1
Total Posts: 52459 Total Subjects: 6805 Total Users: 8337
Powered by Kunena Forum