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It moved to my kidney - any advice ?

4 years 7 months ago #48365 by slocapo
Thank you Cindy for you reply. I will have a lot of questions next week at Dana Farber. It seems like once I started with the BCG treatments I ended up with more tumors and now this… so I am very concerned about going on to IV chemo… Thank you for this site… I passed it on to a woman who's Mom is dealing with this cancer and was very thankful for our venting.

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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4 years 7 months ago #48363 by Cynthia
I am really sorry you have had to go trough this. I lost a kidney following my Radical Cystectomy due to complications and have lived well with only one. As for the chemo if it is in your lymph nodes systemic chemo is most doctors would tell you that it was the best bet for catching any escaped cells that are left in your system. I have been through a long regime of chemo and it can be done you just have to keep the end in mind. You are at one of the best places in the world for advanced treatment of cancer and they are running many clinical trials if need be. As for clinical trials be very careful you understand what they would offer you above standard treatment and be careful of stage 1 trials as they are just at the starting point. Remember that we may not have the exact situation you are going through but have experienced chemo therapy and will be here to listen and share what worked for us. Keep us updated please.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 years 7 months ago - 4 years 7 months ago #48362 by CatherineH
Hello... I am so very sorry that you have gone through such a devastating and scary experience while on vacation, then having to immediately undergo the kidney surgery in Boston. "Dam scary" probably doesn't really come close to how it must feel to get that kind of news.

Since I haven't come close to what you have gone through, I don't have any advice that would be helpful . Cynthia, the ABLCS founder and president, also lost a kidney and has had chemo over the years during her bc battles. Hopefully she will be able to reply to your post as she has time.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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4 years 7 months ago #48361 by fighterm
There are clinical trials for PD1 check point antibodies. The preliminary data show they work very well for the bladder cancer. clinicaltrials.gov/show/NCT01375842. Here is a paper about this treatment meetinglibrary.asco.org/content/128960-144
There are other check point inhibitors, too. I was reading today about MEDI4736. One guy wrote that he is still alive for 2 years with stage 4 esophageal cancer in this trial after everything else failed.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.
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4 years 7 months ago - 4 years 7 months ago #48358 by fighterm
I am sorry to hear that you have these problems. I read your old posts and you mentioned a chemo a year or two ago. Did you do the chemo then? You need to do what doctors tell you to do. The tumor started to spread, you need to stop it. I had an IV chemo for my lymphoma, in 1992 and just finished in January this year (6 months of chemo treatment plus 2 years of maintenance that I start next month). It's difficult, but you have to fight against your cancer.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.
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4 years 7 months ago #48357 by slocapo
I have had 5 TURB's last on being Dec 23rd 2014.. they went in to take 1 tumor out that they thought was causing the heavy bleeding I was having… and severe flank pain.. they said I did not have stones or blockage that they could see…. I will make this story short as I can …..
I left for vacation in Key West to end up 4 days in the hospital with a flush cath. I flew back to Boston to be admitted to Brigham & Womans for 8 days… it had moved to my kidney and a lymph node… it had attached to my back muscle and they had to shave my muscle to remove the kidney that was completely gone.. filled with urine and blood. They opened me from top of belly to belly button… this was dam scary to say the least… I am home and will be starting chemo with Dana Farber in a few weeks. They said this was a 1 - 2 % chance it would have traveled from the bladder to the kidney… I am afraid to do the IV chemo… but I just don't know… anyone out there dealing with this??

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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