Update on BLKJAK

mrs_blkjak

Yesterday was an emotionally exhausting day. We saw the doctor at UW hospital. Normally we feel more hopeful after these appointments, but that was not the case yesterday. Brad did not respond to the medication the way we had hoped he would. Because of this, they went back to look at the pathology again. Brad's pathology report was inconclusive. It showed certain traits and was clearly originating from the kidney, but they were unable to identify specifics. Because of this, they went with a Renal Cell Carcinoma diagnosis and treated it as such. There is more research for RCC than other types of kidney cancer. His lack of response to the drug made them look again, and they think that it may be Collecting Duct Carcinoma instead of RCC. There are fewer options for CDC. So the new plan is to start a more traditional chemotherapy (I believe its carboplatin and something else. I have it written down but don't feel like looking it up right now). He will have his treatments once every three weeks. They believe side effects will be minimal. But its a blow. He NEEDS to respond to this treatment. The doctor was less optimistic about the future if he does not respond to this. We are trying to remain optimistic. If he doesn't respond to this new treatment, there is the possibility that the doctor's "educated guess" that this is CDC is wrong and that another RCC drug may work. But that is less likely than this current treatment working. The odds are not good. We need all the prayers and positive thoughts we can get. We thank you all so much for all of the thoughts and prayers for the past several months. Never in a million years did I see us in this position. Not now. Maybe when we were older, but not now.

We appreciate any opinions any of you might have about this.

danbren2

Sending Prayers

Mrs. Blkjak,

     Things might not seem to be good right now, but hopefully with all the prayers and love being sent to you guys, it will surely turn around for you. Hoping and praying for the best and sending prayers for a great response to the chemo!

                                                     Love and prayers for good health!

                                                      Brenda

Djinnie

Update!

I will keep you both at the centre of my daily prayer, focusing on Brad responding to treatment. 

 

Djinnie x

BLKJAK

Chemo

I've never had chemo before so I am also wondering what it's like. The doctors say that the side effects are minimal because of the medicines they deliver for nausea, etc.  They also think my age (now 42) will help with bouncing back from the chemo sessions. The good news is I was told I don't need a port. I guess I'm a vain cancer patient.  All of my hair will fall out. That's not going to be a big issue for me as I keep my head almost shaved as it is. Have any of you had chemo recently and what were the side effects you experienced? The docs say I can work after treatment (my job is more mental than physical). What are your opinions? I'd like to work remotely from the chemo chair if I can!

I want to sincerely thank everyone for your thoughts and prayers. This has been a horrendous experience since March 2013. I really thought I was getting better because I haven't felt this good in months. It's amazing how well you can feel when you are apparently so sick. I hate cancer.

Brad

garym

Odds are for Vegas...

I'll take prayer, hope, a fighting spirit, and medicine over odds any day.  Its okay to be down and drained when the news isn't what was hoped for, but that needs to harden your resolve to fight even harder.  Every day we are closer to a cure, I firmly believe that, you just have to get there.  So ATTACK WITH EXTREME PREJUDICE and TAKE NO PRISONERS for you are warriors, you are SURVIVORS!!!  You can count on positive thoughts and prayers from everyone here, that's a fact. 

Hang in there,

Gary

BLKJAK

garym said:

Odds are for Vegas...

I'll take prayer, hope, a fighting spirit, and medicine over odds any day.  Its okay to be down and drained when the news isn't what was hoped for, but that needs to harden your resolve to fight even harder.  Every day we are closer to a cure, I firmly believe that, you just have to get there.  So ATTACK WITH EXTREME PREJUDICE and TAKE NO PRISONERS for you are warriors, you are SURVIVORS!!!  You can count on positive thoughts and prayers from everyone here, that's a fact. 

Hang in there,

Gary

Thanks for the kind words

I am trying to get myself back into the fighting mode. It's going to take a couple days I am sure. Curling up into a fetal position isn't an option, but I do have to get this scared and horrified feeling out of my system. I'm going to try and bill a customer from the chemo chair. That will be a first for the company I work for, and hopefully one that won't be repeated by others.

I'm also planning on going to church this coming Sunday. It's something I haven't done for longer than I'd care to admit. It's time to show the big guy that I really need for him to have my back. 

Well, that's enough rambling for now. I'm still scared $hitless, but I need to push forward. I still have a chance!

 

P.S. I looked up Collecting Duct Carcinoma on the web. You thought RCC had old info out there. CDC pulls up articles from 1993, along with Centers for Disease Control stuff. LOL.

Alehan

Prayers

Adding both of you to mine!

 

 

cran1

Still around closet reading

Still around closet reading when I can't sleep...which is always! You are min my thoughts ole man! I'm only 36

BLKJAK

Surprised

I am surprised I haven't heard from the pillars of this group - Neil, TW, GSRon, etc. on my recent developments. I am scared to death at the lastest outcome. How could this have gone from RCC to CDC? CDC is so rare and treatments are almost non-existant. Do we go for a second opinion? I have felt pretty darn good the past two weeks aside from a little kidney pain here and there which is corrected by taking my low dose of Oxycodone.

My wife and I have been basket cases lately. Last night I was doing a little after hours work and I just started sobbing. I completely broke down like a little child. I ended up taking two lorazepam pills and an oxycodone to get myself somewhat back together.

It just isn't right to go from expecting a few years of life and perhaps living to see a new wonderdrug or perhaps cure, to maybe not making Christmas with my family. It's just not fair and why the heck is this happening to me?

Brad

GSRon

BLKJAK said:

Surprised

I am surprised I haven't heard from the pillars of this group - Neil, TW, GSRon, etc. on my recent developments. I am scared to death at the lastest outcome. How could this have gone from RCC to CDC? CDC is so rare and treatments are almost non-existant. Do we go for a second opinion? I have felt pretty darn good the past two weeks aside from a little kidney pain here and there which is corrected by taking my low dose of Oxycodone.

My wife and I have been basket cases lately. Last night I was doing a little after hours work and I just started sobbing. I completely broke down like a little child. I ended up taking two lorazepam pills and an oxycodone to get myself somewhat back together.

It just isn't right to go from expecting a few years of life and perhaps living to see a new wonderdrug or perhaps cure, to maybe not making Christmas with my family. It's just not fair and why the heck is this happening to me?

Brad

I had not replied before as I

I had not replied before as I do not know much about CDC.  However, I re-read your profile info..  And it seems you were on only ONE drug so far..?  Not everyone responds to every drug.  So another drug may just work for you.  But the bigger concern is do you have the correct diagnosis.??  I have no idea of your Onc, but was hoping someone else here would chime in.  You may want to go on to the SP WEB site, they have a post that lists Doctors in many areas of the country. Go to Smart Patients.com and do a search.   Another opinion may be what you need... not sure.. but that is my best guess..

Good Luck..!

Ron

garym

BLKJAK said:

Surprised

I am surprised I haven't heard from the pillars of this group - Neil, TW, GSRon, etc. on my recent developments. I am scared to death at the lastest outcome. How could this have gone from RCC to CDC? CDC is so rare and treatments are almost non-existant. Do we go for a second opinion? I have felt pretty darn good the past two weeks aside from a little kidney pain here and there which is corrected by taking my low dose of Oxycodone.

My wife and I have been basket cases lately. Last night I was doing a little after hours work and I just started sobbing. I completely broke down like a little child. I ended up taking two lorazepam pills and an oxycodone to get myself somewhat back together.

It just isn't right to go from expecting a few years of life and perhaps living to see a new wonderdrug or perhaps cure, to maybe not making Christmas with my family. It's just not fair and why the heck is this happening to me?

Brad

2nd, 3rd, 4th, whatever it takes...

Brad,

Have they confirmed CDC or is it still an "educated guess"?  Either way a second opinion is never a bad idea, I believe it took Fox four opinions before he was offered any help/hope and he is well beyond his original expiration date.  Time dwelling on "Why me?" is very negative and its time wasted that you will never get back.  Concentrate only on the things that you control, you must become your own advocate with a take no prisoners attitude.  YOU CAN DO THIS!!!

Godspeed,

Gary

NanoSecond

BLKJAK said:

Surprised

I am surprised I haven't heard from the pillars of this group - Neil, TW, GSRon, etc. on my recent developments. I am scared to death at the lastest outcome. How could this have gone from RCC to CDC? CDC is so rare and treatments are almost non-existant. Do we go for a second opinion? I have felt pretty darn good the past two weeks aside from a little kidney pain here and there which is corrected by taking my low dose of Oxycodone.

My wife and I have been basket cases lately. Last night I was doing a little after hours work and I just started sobbing. I completely broke down like a little child. I ended up taking two lorazepam pills and an oxycodone to get myself somewhat back together.

It just isn't right to go from expecting a few years of life and perhaps living to see a new wonderdrug or perhaps cure, to maybe not making Christmas with my family. It's just not fair and why the heck is this happening to me?

Brad

Brad.  I didn't respond because I have not researched CDC in detail.  But I promise to get on it and see if I can offer you some concrete ideas.

In the meantime, YES, absolutely you should seek out a second (or third or more) opinion.  Specifically because this is such a rare version of renal cancer.  In fact it's time to figure out who the very top experts are who have dealt with this - and consult with them no matter where they are located.

I also heartily endorse Ron's suggestion.  Sign up at: www.SmartPatients.com.  There is a wealth of expertise from both patients and caregivers available over there - as well as here, of course.

I can understand your shock and confusion.  But the first order of business is to figure out, what, exactly, you are dealing with.

In the meantime, please take my dietary recommendations seriously.  They can work for every version of renal cancer out there.

TillieSOK

Please know that every good

Please know that every good thought, every prayer I've got in me is going up to you both.  Also know that you really need to get a second, third, or even a fourth opinion on this diagnosis.  Hang in there and let "the big man" take some of the worries off your shoulders.

Limelife50

hmmmm

Big Prayers Coming Your  Way!!

alice124

BLKJAK said:

Thanks for the kind words

I am trying to get myself back into the fighting mode. It's going to take a couple days I am sure. Curling up into a fetal position isn't an option, but I do have to get this scared and horrified feeling out of my system. I'm going to try and bill a customer from the chemo chair. That will be a first for the company I work for, and hopefully one that won't be repeated by others.

I'm also planning on going to church this coming Sunday. It's something I haven't done for longer than I'd care to admit. It's time to show the big guy that I really need for him to have my back. 

Well, that's enough rambling for now. I'm still scared $hitless, but I need to push forward. I still have a chance!

 

P.S. I looked up Collecting Duct Carcinoma on the web. You thought RCC had old info out there. CDC pulls up articles from 1993, along with Centers for Disease Control stuff. LOL.

Brad,
Just went to Smart

Brad,

Just went to Smart Patients and read a thread on Collecting Duct Carcinoma that seems to contain some good information that you and Mrs Blackjack need to read.  You probably have by now, but--just in case you hadn't--I wanted to add my prompting for you to join there.

CDC is a so rare and so frightening, I understand the fear. But you need to transition that fear to fight mode. Get pissed - get angry - fight! You can't give in!  That determination will be be an extremely valuable weapon in this war. You also need to know you have the right medical team. Are you confident with your doctors? If not, see other doctors; get more opinions. Focus on getting your weapons  aligned to WIN.

Know that you and Mrs. Blackjack are in my prayers. You can do this!

Positive thinking sees the invisible; feels the intangible; and can achieve the impossible.

 

alice124

BLKJAK said:

Thanks for the kind words

I am trying to get myself back into the fighting mode. It's going to take a couple days I am sure. Curling up into a fetal position isn't an option, but I do have to get this scared and horrified feeling out of my system. I'm going to try and bill a customer from the chemo chair. That will be a first for the company I work for, and hopefully one that won't be repeated by others.

I'm also planning on going to church this coming Sunday. It's something I haven't done for longer than I'd care to admit. It's time to show the big guy that I really need for him to have my back. 

Well, that's enough rambling for now. I'm still scared $hitless, but I need to push forward. I still have a chance!

 

P.S. I looked up Collecting Duct Carcinoma on the web. You thought RCC had old info out there. CDC pulls up articles from 1993, along with Centers for Disease Control stuff. LOL.

Dup

 

 

Positive thinking sees the invisible; feels the intangible; and can achieve the impossible.

 

 

angec

I am sorry they are

I am sorry they are suggesting CDC. I STRONGLY feel that you need to send your path reports and biopsy samples elsewhere. You definitely should get a second opinion (i feel-my opinion) before you start chemo. My mom has unclassified RCC and the Votrient has worked on her. I am confused.  If Votrient doesn't work don't you just switch to another drug?  Sometimes the first line of treatment doesn't work so they switch. Possibly to Sutent or another drug.  Especially since it seems they are not even sure it is CDC.  I am not comfortable with what they are saying, that is my first instinct.  Is it possible to send your samples out?  Where are you guys located? 

 

Also, have you considered IL-2?  What options do you have at your end? You were on Votrient for how long?  Did you see any response at all on any of the mets?  I will be praying for you and sending positive thoughts to you. Believe that we all care and are in your corner.  Let us know where you are maybe someone can suggest somewhere else for you to go to seek answers.  All the best to you both!

alice124

angec said:

I am sorry they are

I am sorry they are suggesting CDC. I STRONGLY feel that you need to send your path reports and biopsy samples elsewhere. You definitely should get a second opinion (i feel-my opinion) before you start chemo. My mom has unclassified RCC and the Votrient has worked on her. I am confused.  If Votrient doesn't work don't you just switch to another drug?  Sometimes the first line of treatment doesn't work so they switch. Possibly to Sutent or another drug.  Especially since it seems they are not even sure it is CDC.  I am not comfortable with what they are saying, that is my first instinct.  Is it possible to send your samples out?  Where are you guys located? 

 

Also, have you considered IL-2?  What options do you have at your end? You were on Votrient for how long?  Did you see any response at all on any of the mets?  I will be praying for you and sending positive thoughts to you. Believe that we all care and are in your corner.  Let us know where you are maybe someone can suggest somewhere else for you to go to seek answers.  All the best to you both!

I agree with Ange.
On that

I agree with Ange.

On that Smart Patients thread, someone with CDC was treated successfully with Sutent for two or three years. But I'm with Ange on the diagnosis, it sounds too "iffy" for my liking.

angec

alice124 said:

I agree with Ange.
On that

I agree with Ange.

On that Smart Patients thread, someone with CDC was treated successfully with Sutent for two or three years. But I'm with Ange on the diagnosis, it sounds too "iffy" for my liking.

Thank you Alice! I agree with

Thank you Alice! I agree with Alice who agrees with Ange!  Just to make you smile!  Keep the faith, i feel there is treatment options for you!  I will be doing some investigting for you guys and will post further when i find something. In the meantime, here is the link from Smart Patients. I hope it helps.  I didn't read the whole thing so if there is any negative posts don't pay attention to it. There is good info there too with survivor stories. However, i am not convinced they know for sure it is cdc. It can just be unclassified.  And if it is cdc other drugs have responded to it besides chemo.

 https://www.smartpatients.com/forums/1-conversations/topics/1286-collecting-duct-carcinoma-stage-iv-seeking-hope#sbposts-20141

 

Do not worry!  One day at a time!  Big hugs!

GSRon

angec said:

Thank you Alice! I agree with

Thank you Alice! I agree with Alice who agrees with Ange!  Just to make you smile!  Keep the faith, i feel there is treatment options for you!  I will be doing some investigting for you guys and will post further when i find something. In the meantime, here is the link from Smart Patients. I hope it helps.  I didn't read the whole thing so if there is any negative posts don't pay attention to it. There is good info there too with survivor stories. However, i am not convinced they know for sure it is cdc. It can just be unclassified.  And if it is cdc other drugs have responded to it besides chemo.

 https://www.smartpatients.com/forums/1-conversations/topics/1286-collecting-duct-carcinoma-stage-iv-seeking-hope#sbposts-20141

 

Do not worry!  One day at a time!  Big hugs!

Agree to agree..  Sutent may

Agree to agree..  Sutent may be a very good choice, as it can work with CDC and CC.. 

Ron

BLKJAK

GSRon said:

Agree to agree..  Sutent may

Agree to agree..  Sutent may be a very good choice, as it can work with CDC and CC.. 

Ron

Sorry if I came across harsh

I have been essentially freaking out since Tuesday. I guess I was hoping for a miracle response. I'm sorry if my post seemed whiney or whatnot, it surely wasn't my intention.

I've been able to calm down a bit as has mrs_blkjak. Mrs_blkjak called the oncology team at UW-Madison and spoke to one of the leaders of the team. They want to treat this as CDC because of where the tumor sits and because Votrient had really no effect. They want to hit it with chemo for a few rounds and see if the tumor shrinks. If it shrinks it's indicitive of CDC. If it shrinks they will finish out the course of chemo and then stop treatment. They will then schedule scans to monitor the tumor and hopefully it will remain stable. When the tumor starts growing again they will resume chemo, perhaps changing the formula and we play the same game all over again. Now if the chemo doesn't shrink the tumor, I will be put on a secondary line of RCC drugs since Votirent didn't work for me. I'm not sure about IL-2. Mrs_blkjak has been looking for a new job working for the county so we can get better health insurance benefits at greatly reduced cost. She will become the main bread winner in the family and allow me to go on disability so I can a) spend more time with the kids b) perhaps go on IL-2 or other treatment c) prepare herself for life without BLKJAK.

Mrs_blkjak is checking with our insurance company to see who would be able to provide a third opinion covered by our insurance. She has to speak to our "case manager" which I guess is like a concierge. Hopefully something good will materialize from that. 

Mrs_blkjak has been a blessing during all of this. She is able to ask the questions that I don't seem to remember. I am blessed to have her in my life for the past 19 years. This definitely isn't what she signed up for, but as long as she's by my side, I'll be OK.

Once again I am sorry if I came across crass or foul or whatnot. This has absolutely been hell.

Here's a little bit of advice - I do not recommend taking two Lorazepam, one oxycodone and a glass of red wine together. I think I passed out around 9:00pm and woke up in a sitting position on the couch at 6:00am this morning.

BLKJAK