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alan01
Posts: 3
Joined: Aug 2013

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icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Alan,

Neither I or other members of our club (Kidney Cancer Survivors and caregivers/) can help you without more information. I assume that this is a second round of Kidney Cancer, If not, please clarify.

 

What is the size of your tumors, and any other details you can spare regarding the initial diagnosis and recurrance.

 

Icemantoo

alan01
Posts: 3
Joined: Aug 2013
 
NanoSecond's picture
NanoSecond
Posts: 613
Joined: Oct 2012

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.

NanoSecond's picture
NanoSecond
Posts: 613
Joined: Oct 2012

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.

danbren2's picture
danbren2
Posts: 204
Joined: May 2013

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

rainsandpours's picture
rainsandpours
Posts: 127
Joined: Apr 2013

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!

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

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

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Well thanks for explaining that one, iceman!  I was so confused.  I read the initial post and then I read your response; at which time, I made a mental note to check back later, anticipating clarity. I decided to log on one last time before crawling in bed, to see if the author of the post had shed any new light on his situation and was, as I said, confused.  I still don't understand it but, at least I know I'm not crazy...well, maybe slightly!  At any rate, I hope he finds some answers and pray for the best possible outcome for him.  This is scary stuff!!  I'm grateful to have found this site.

Sindy

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

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

Djinnie's picture
Djinnie
Posts: 914
Joined: Apr 2013

Hi Alan, 

I don't know if you will read this message, but I just wanted to assure you that no one was, as you put it 'looking down' on you. Iceman was merely giving you the usual welcome, if you had looked at other posts you would have seen that. I can imagine you a very frightened and need someone to talk to, if you didn't you would not have reached out in the first place.

There are several people on this site, who not only have experience with this awful disease, but gather and study information. They can offer help to you, they are not doctors but they can help with sound advice. Nano being one such person, he was in NO WAY questioning your experience, he was concerned for you. In asking for more information, he wanted to be able to assure you that you were receiving the right treatment. It is not uncommon for the doctors to get it wrong, they are not infallible, and often in seeking second or third opinions we find better forms of treatment.

We don't have all the answers, but we are all in the same boat, and we look out for each other as best we can. There is no room for being judgmental, the people on here are compassionate and only want to help you. There is no need for you to suffer in isolation, so don't!!

Why don't you give it another shot? We are here for you if you change your mind:)

Djinnie x

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Alan,

I think you have to understand why we ask questions. You and others on this board want help in dealing with Kidney Cancer.  A Kidney Cancer inquiry has many forms from a spot on an initial scan where the radiologist suspects that Kidney Cancer is a possabilty to evidence that it has spread throughout your body. The last thing any of us wants to do is give you an inappropriate response. We do not want to tell you everything  will turn out terable where you will be cured by surgery or that everything will be easy where you have a difficult road ahead. This is why we ask questions, so that we can respond openly and honestly to your inquiry. We are not questioning your truth. We only need information to respond to you honestly . If you take the time to read thru our posts you will find that we are very caring and that we as fellow Kidney Cancer survivors tell it like it is and we all respect the journeys that our fellow survivors have been on whether easy or difficult compared to our own.

 

Icemantoo

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