Update on BLKJAK

BLKJAK said:

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

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

mrs_blkjak said:

I agree that the CDC

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!

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?