Padcev

6 months 1 week ago #61079 by Alan
Replied by Alan on topic Padcev
TomK,

Many of us have bookmarked the Cleveland Clinic summary of different diversions with pros and cons. One observation. Most people appear to accept and adapt to whatever they have chosen.

my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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6 months 1 week ago #61078 by tomk
Replied by tomk on topic Padcev
Jack R

Thanks for your good wishes and as always informative messages. and good advice.

Some notes completing 2 cycles of Padcev:

The first cycle was difficult, the worst being severe neck to toe rash, if you can imagine a beet with chicken pox, with unrelenting itching and no response to topical steroids. Prednisone eventually quieted it down to where it was tolerable. However there were no other significant side effects, Dry skin, dry mouth, raw tongue, and some fatigue.

They decreased the dose for the second cycle and added 10 mg Prednisone for 4 days starting the day of each infusion. That has worked. The dryness and minor fatigue is still with me, but other than that I feel normal.

One more cycle and then RC, which is scheduled for Feb 3rd. I am interested in any advice or experience with urostomies or neobladders as I need to make that decision soon.

TomK

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6 months 2 weeks ago #61075 by Jack R
Replied by Jack R on topic Padcev
TomK,

I, and I am sure others, will be interested in hearing of your experiences with Padcev. So many new trials for the evolving MABs sound good but need to move to later stage trials. I look forward to learning from the experiences of others, always remembering that we each react differently to drugs; that each of us has a different history and health status.

I attempted to enter the Padcev study, but was rejected because I have two concurrent flavors of cancer. That was not acceptable to a trial that aimed to address ONE type of cancer only. Padvec looked good - worth a try - to me & primary care team.

Fortunately, Keytruda went to open status for advanced cancer after platinum based chemo, and I opted in. 

While a number of people here, and patients I have met, report positive results with Keytruda, the side effect hit me hard enough that I had to stop after 5 cycles. Obviously not the right  drug for me.

Wishing you well with Padcev, please do keep us posted.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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7 months 2 weeks ago #61024 by tomk
Replied by tomk on topic Padcev
Hello Jack,

I'm due to start a trial next week (Enfortumab Vedotin) at Mayo in Phoenix. Three 3 week cycles of chemo, then RC, then 6 more cycles. Study title is SGN22E-002 if your interested. I would be interested in anyone's experience with Padcev.

Tomk
MIBC
pT2a

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7 months 4 weeks ago #61011 by Jack R
Replied by Jack R on topic Padcev
Tomk,

You will want to get your cardiologist involved in your treatment planning. S/he is familiar with your situation and will have valuable input for your oncologist.

The concerns, brought forth by MY care team were:
1) Cardiotoxicity of Cisplatin (and Carboplatin) and Gemzar - or "GC". Also applies to other chemo drugs, and
2) Drugs used on chemo treatment days and as support on non-chemo days; of particular concern was the heavy use of steroids on some chemo days and the potential of fluid retention impacting cardio function.

Your cardiologist and care team may have different or additional concerns, based on your situation. Use the team's understanding of your situation to your full advantage. Have them consult with your Oncologist as necessary.

One journal article that is close on point - depending on your situation and chemo proposal. At the least, this article describes some of the Heart/Chemo interactions that deserve consideration. 

www.uspharmacist.com/article/chemotherapy-agents-that-cause-cardiotoxicity

In the end, if you go the chemo route, dosages and treatments will be tailored to meet your needs and situation.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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7 months 4 weeks ago #61010 by tomk
Replied by tomk on topic Padcev
City of Hope is in Los Angeles, California and is a major Cancer center. I live in Arizona and am waiting for an appt at Mayo in phoenix. I agree with you about going to a top Cancer center and will postpone my chemo here (due to start on 11/3) if I get an appt. at Mayo. I just want to be armed with as much info as possible.

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