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Update on BLKJAK

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

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's picture
danbren2
Posts: 190
Joined: May 2013

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's picture
Djinnie
Posts: 786
Joined: Apr 2013

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

 

Djinnie x

BLKJAK
Posts: 108
Joined: Apr 2013

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's picture
garym
Posts: 1651
Joined: Nov 2009

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
Posts: 108
Joined: Apr 2013

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.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
alice124
Posts: 860
Joined: Mar 2012

 

 

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

 

 

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

Adding both of you to mine!

 

 

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

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

BLKJAK
Posts: 108
Joined: Apr 2013

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's picture
GSRon
Posts: 1272
Joined: Jan 2013

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
NanoSecond
Posts: 532
Joined: Oct 2012

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's picture
TillieSOK
Posts: 237
Joined: Jul 2013

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's picture
Limelife50
Posts: 411
Joined: Nov 2011

Big Prayers Coming Your  Way!!

angec's picture
angec
Posts: 622
Joined: Mar 2012

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's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
angec
Posts: 622
Joined: Mar 2012

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's picture
GSRon
Posts: 1272
Joined: Jan 2013

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

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

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

GSRon's picture
GSRon
Posts: 1272
Joined: Jan 2013

No apology needed around here...  Being all of us are fighting or helping someone fight this CRAP, a little venting is expected..  At times it just stinks.. and then we get not so good news or news we do not fully understand..  This is why we are all here, to help each other any way we can.. if we can.

Now passing out may not of been a bad thing... heh..

Be Well All..!!

Ron :)

Alehan's picture
Alehan
Posts: 24
Joined: Oct 2013

You didn't sound harsh. You sounded human! If I had a dime for every time I felt like I was being crazy... I'd have a lot of dimes and I'm not the one actually afflicted with this awful illness.

I think my husband and I are around your age and are coming up on our 20th anniversary. A lot of people thought we'd never make it as I was a "child bride" at 19. Sometimes you just know when you've found the one, eh? :)

srbelle1
Posts: 123
Joined: Jul 2013

I am relatively new here and read as much as I can about renal cancer since my husband was diagnosed in July.

you did not come across as rude or harsh, just terrified and justifiably so. I try to avoid googling anything related to kidney cancer because it scares me and without a medical background, even more so.

so, I googled collecting duct carcinoma and was surprised to learn it is a subtype of kidney cancer; the chemo you mentioned has been used with lung and ovarian cancers and is now being used for aggressive breast cancer. If kidney cancer is not responsive to kidney cancer, has your oncologist explained why it might be for a subtype.

we will have the path report on my husband's cancer next week and I am truly dreading it. Sometimes, ignorance is bliss.

Wishing you the best and again, there was nothing rude in your post.

sarah

 

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I agree that the CDC diagnosis is iffy. It is an "educated guess" and that is it. However, his pathology showed some "traits" of CDC. It also showed traits of clear cell. They really couldn't get a clear diagnosis. They were going to have the pathologist take another look at it. In the meantime, I am checking to see if Mayo is an option for a third opinion. I did look on smart patients, and it looks like the chemo they're recommending is the standard protocol for CDC. The plan is to do two cycles, then scan to see if its working. If its not, then we will go back to UW and look at second line RCC meds. So unless I can convince someone to take another look at the pathology before late next week, we will probably go through with this plan.

We appreciate so much all the nice thoughts and prayers. We are trying to move back into a positive, fight mode and out of this "holy crap what just happened" mode. Cancer sucks. Its amazing how much it turns life upside down. 

Oh, and I thought it was fine that my husband crashed out on his lorazepam/oxycodone/red wine combo last night! A little mind break was a good thing! I tried to get him to go to bed, but that didn't work!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Another "pillar" checking in in response to your plea.  I, too, have been away from my post, having lost a few days while swinging from one life-threatening emergency to another (most recent being a Doppler scan on Monday for a suspected DVT).

Perhaps I've missed the boat and can't contribute anything helpful at this point?  My thought was that the first thing you needed to do was to regain a sense of control and get back to constructive thinking about your situation.  It sounds to me as if you've achieved that to a great extent.  As Gary put it so well:

"Time dwelling on "Why me?" is very negative and its time wasted that you will never get back."  There's certainly nothing fair about this game.

Obviously you need to establish with as much certainty as possible what the disease is, in order to take the best shot at treatment.  CDC treatment is different from RCC and you want to get the best.  You've been given an excellent suggestion by Ron and Neil about going on to Smart Patients for further help and Neil's generous commitment to helping your researches in to CDC treatment (if that appears to be the correct dx).

I imagine you are leading a sensible lifestyle now and doing all you can to improve the odds.  You're probably eating appropriately?  If not, please take Neil's advice and pay attention to your diet.  However, I must enter a caveat against his dangerously overstated assertion:

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

Neil and I represent an axis here (and even more so on Smart Patients) in emphasising the importance of nutrition and deploring how little importance it's accorded by the medics.  We also have largely co-extensive views on what constitutes a good diet.  However, we part company on the topic of the recent little bandwagon of "ketogenic diets".  If Neil has that kind of diet in mind when he says that they can ''work for every version of renal cancer" then he's plainly wrong.  I say that with some feeling since I personally need such a diet like a hole in the head - it would finish me off in no time - I might just as well blow my brains out and be done with it, and that is not the way I'm made.  I hope to be around for a while yet and pursuing our researches and debating these issues with Neil will continue to be a major source of pleasure for me - apart from the sheer pleasure of academic dialogue there's the fact that we've formed the sort of amazingly strong friendship that only forums like this of folks enduring the same fate can generate between complete strangers. 

[In that context I envy you folks in the US the upcoming trip to Kalahari when quite a few will meet up.  How lucky this forum is to have the services of a professional like iceman in setting that up - it couldn't be in better hands and my hat's off to you Garry for making it a reality.  It would be so nice to meet a few others in the flesh.  Luckily for me the disappointment of not being involved is mitigated by the fact that I'd run a mile from any kind of ride and in any case I'm not a social animal.]

I notice that Alice has already plunged into SP and found that a visit there will repay the effort - have you managed to do so yet and have you made any further progress re clarifying your dx?

 

NanoSecond's picture
NanoSecond
Posts: 532
Joined: Oct 2012

Have no fear Tex, I was not suggesting a Ketogenic diet as the one being applicable.  I do advocate a low-carbohydrate, high-fat diet though.  I do NOT advocate puting oneself in a state of ketosis unless under a doctors care.

However, if you are objecting to my advocacy of a low-carb diet then we do have a legitimate differences to further "discuss".

I do think that consideration of ketogenic diets may (and I emphasize the "may" here) have some therapeutic efficacy in certain specific situations - but not as a broad policy that is applicable to all renal cancer (or any cancer) patients.

For example, a ketogenic diet may act in much the same way as an mTOR inhibitor:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076631/

Regardless, I certainly would not advocate a ketogenic approach for you at this point Tex. I would - and do - advocate a low-carb diet suited to whatever tickles your fancy.

 

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