Forum

× click the New Topic button to post

Results of the BIG 12

4 years 11 months ago #47420 by CatherineH
That's great news and overall, I think that's a pretty good report card! So happy for you that the other issue has stayed stable. Best wishes on your next cysto...

and I reject any complaints of bad beach weather. We're in the 20's tonight thanks to that polar vortex sweeping through the Appalachian Mountains. Let us hear from you after that next checkup, and I appreciate that you pop in from time to time to post in the forum.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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

4 years 11 months ago #47416 by rbmc
Hi Catherine, and thanks for asking. Coming up on one year now with my other "problem" which was introduced into discussions back then. Thankfully still holding stable there without any evil progressions. Have seen more cancer doctors than I care to admit though. Sorry to have neglected ABLCS. I have popped in on a few discussions if my experience is relevant to others. Staying "on topic", my next Cysto is coming up soon, and if good, will put me at the magic 24 month mark of Cancer Free (Bladder that is.) I'm not one to anticipate and worry, just stay positive that there will be a celebration. OK, I'll try to be nice and post afterwards. And include grumbles about no hot sun at the beach. Thanks for the kick.

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

4 years 11 months ago #47414 by CatherineH
Hi RBMC... just checking in with you. How are things going?

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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

5 years 9 months ago #45702 by CatherineH
I am happy they have started you on Dr. Verstovsek's protocol. He seems to be a pioneer in research for this disease. Just like with bc, you have to be your own advocate and press for the best info/treatment you can find. It seems as with any serious condition, the earlier the intervention the more successful the outcome.

This must seem like such a kick in the stomach coming on the heels of dealing with bladder cancer. I wish you well and don't feel like you have to have a bc reason to check in. You are part of the family here now. We probably won't be much help as far as MF information, but we are very experienced at moral support.

Take care...

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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

5 years 9 months ago #45701 by rbmc
Catherine, thanks for your interest in MF. I have garnished a tad bit more wisdom from the confusion, and hope to be able to ask some better questions now. Soon I want to consult with the medical team to get a better understanding of the current situation, and of course, the future. I have seen 2 specialists, no problems there, and both seem to be on the same track, and I would say equally well with another other doctor/hospital at this time. I start that medication (Jakafi) tomorrow. Try it for a month, and see if there are improvements in blood or other symptoms. But there is no "cure". Frightening just to look at an $8,000 bottle of pills. I'll try to slip in any news along with a BC report, so as not to be totally off topic.

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

5 years 9 months ago #45697 by CatherineH
Hello RMBC... I've been thinking about your new diagnosis and did some internet searches on myelofibrosis. You have probably been doing the same thing but I did find this article about a clinical trial conducted at MD Anderson which led to the FDA approval of a drug called ruxolitinib as the first drug approved for the treatment of myelofibrosis.

Here is the link if you are interested in reading more:

MD Anderson Trial

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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 1641 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: frank41
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52785 Total Subjects: 6867 Total Users: 8440
Powered by Kunena Forum