.

Alan,

     My name is Brenda and I am 55 years old.  I am married to a Saint and could not be happier.  My first bout with cancer was told to my husband and I in July of 2011, and it was said that I have kidney cancer and blood clots in my lungs, they wanted to keep me at the hospital, but I choose to leave to be able to talk to my family at home.  It seemed no one was very worried about the cancer, but they were all freaking out about the blood clots in the lungs.  I was immediately put on blood thinner meds and I also had a screen placed in my main vein on my left side.  When I was able finally able to see a surgeon about my kidney, we were told it would be a radical, and none of the kidney would be able to be saved on my right side, the tumor was to big.  The surgery took place August 23, 2011 and it went great.  My kidney and my adreline gland was removed, and my main artery looked clean, so everything was good. At this time becasue there was not active cancer in my body treatments were not being done, I had to come back in 6 months for a PET/CAT scan.   I was back at work Sept 29 full time, and in July of 2012 I was able to stop all the blood thinners, I was for the frist time in a long time not on any medications at all.

    On January 1, 2013 (only 18 months after the removal of my kidney) my husband and I had gone out to dinner for New Years eve, came home and we were watching the ball drop in NYC, I started coughing.  It was blood I was coughing up.  Off to the hospital we went, and I did not wake up for about a week, and to our suprise was told this was not cancer related, but a really bad lung infection.  I was back at work on Jan 21. On March 13, My husband and I were home and I started coughing up blood again, not near as bad as the first time, but we went back to the hospital.  This time we were told it is cancer related and I lost  1/3 of my right lung.  I started back to work April 29, had my scan in June and so far everything has been clean with no active cancer in my body!  I am due for my next scan in October, and already I am feeling a bit anxious about it.  I thank God for everyday that I am here, and I come to this sight everyday to read about the progress some of us are making, and then sadly the ones that are no longer fighting the battle, but are watching us from above.

     I love these people, they will tell you like it is, but they will also tell you to not worry about yesterday, its gone, enjoy today like it was your last, because tomorrow is not promised to any of us, even if you are not fighting cancer.  Just keep yourself in as good shape as you possibly can, eat right, exercise, and do what the doctors tell you to do, and come here every day to get your moral support.  That is what I do, these people are an extention of my family and I don't want to go through this without them.

     I hope this helps some, I am still here, feeling really great at this moment and God willingly it will continue.  I wish you love, prayers, and most of all good health and clean scans!

                                                             Brenda

alan01 said:

part 2

 

Alan,

I can imagine this is rather traumatic for you.  And I don't wish to amplify your anxiety level even more.  However, what you are describing (so far) does not make sense.  Most renal cell carcinomas (RCC) do not respond to either radiation or "standard" chemotherapy such as Erlotinib.  The one exception might be if your diagnosis was of a very aggressive form - but I don't detect that is the case here.  Furthermore, if it is very aggressive I am not aware that this particular chemo drug would be the first one to try.

Can you provide some more details?  Most important - your cell histology (is it clear cell or chromophobe or papillary, etc.)?  Does it exhibit any sarcomatoid features?  If these terms don't mean anything to you - do you know anyone who might help to serve as your patient advocate?  In particular, can you get an independent second opinion of your diagnosis and therapy?

I am not trying to further upset the apple cart.  But you deserve the very best care available.  I just can't tell if that is happening here or not.

rainsandpours said:

Alan....I'm so sorry you're

Alan....I'm so sorry you're dealing with a recurrence.  All hope is not lost though.  Your tumor size is still within the limits for RFA treatment- but they need to do it soon.  It would be a much less invasive procedure and spare your entire kidney.  You can continue to have your systemic treatments at the same time.  Please ask your doctors about it.  There's also the option for a partial Neph.  Save as much of your remaining organ as possible!

My initial response to Alan was to a different post by him with a different title. I am sorry that AFTER I use the word club that someone edits the prior comment to the effect that they do not like my choice of words. We can only help those that let us help them.

Icemantoo

danbren2 said:

My story

Alan,

     My name is Brenda and I am 55 years old.  I am married to a Saint and could not be happier.  My first bout with cancer was told to my husband and I in July of 2011, and it was said that I have kidney cancer and blood clots in my lungs, they wanted to keep me at the hospital, but I choose to leave to be able to talk to my family at home.  It seemed no one was very worried about the cancer, but they were all freaking out about the blood clots in the lungs.  I was immediately put on blood thinner meds and I also had a screen placed in my main vein on my left side.  When I was able finally able to see a surgeon about my kidney, we were told it would be a radical, and none of the kidney would be able to be saved on my right side, the tumor was to big.  The surgery took place August 23, 2011 and it went great.  My kidney and my adreline gland was removed, and my main artery looked clean, so everything was good. At this time becasue there was not active cancer in my body treatments were not being done, I had to come back in 6 months for a PET/CAT scan.   I was back at work Sept 29 full time, and in July of 2012 I was able to stop all the blood thinners, I was for the frist time in a long time not on any medications at all.

    On January 1, 2013 (only 18 months after the removal of my kidney) my husband and I had gone out to dinner for New Years eve, came home and we were watching the ball drop in NYC, I started coughing.  It was blood I was coughing up.  Off to the hospital we went, and I did not wake up for about a week, and to our suprise was told this was not cancer related, but a really bad lung infection.  I was back at work on Jan 21. On March 13, My husband and I were home and I started coughing up blood again, not near as bad as the first time, but we went back to the hospital.  This time we were told it is cancer related and I lost  1/3 of my right lung.  I started back to work April 29, had my scan in June and so far everything has been clean with no active cancer in my body!  I am due for my next scan in October, and already I am feeling a bit anxious about it.  I thank God for everyday that I am here, and I come to this sight everyday to read about the progress some of us are making, and then sadly the ones that are no longer fighting the battle, but are watching us from above.

     I love these people, they will tell you like it is, but they will also tell you to not worry about yesterday, its gone, enjoy today like it was your last, because tomorrow is not promised to any of us, even if you are not fighting cancer.  Just keep yourself in as good shape as you possibly can, eat right, exercise, and do what the doctors tell you to do, and come here every day to get your moral support.  That is what I do, these people are an extention of my family and I don't want to go through this without them.

     I hope this helps some, I am still here, feeling really great at this moment and God willingly it will continue.  I wish you love, prayers, and most of all good health and clean scans!

                                                             Brenda

Brenda, WOW!  That's a story alright!  You are quite the trooper.   Reading your story makes me feel shame for my little pity parties.  You are an inspiration to me and I expect, many others.  So, keep on inspiring, encouraging and supporting, for, newbies like me learn a lot from kind hearted people like you.  Thanks for sharing!

Sindy

alan01 said:

part 2

 

Alan,

I am not sure if you were upset with my response (which was only designed to be a query).  If so, I wish to apologize. My intent was not to question what you had written about your experience.  My intent was only to gather more pertinent information as to why you have received the recommendation(s) for your current therapy.

You came here to get some help.  I am extremely sorry that has not happened.

As Djinnie has so eloquently written, please give us another try.  If my choice of words offended you then I certianly apologize.  There are quite a few other patient advocates and renal cancer patients around here who certainly can (and will) give you much better advice than I.

I do hope you will give them a chance.