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Weird update on BLKJAK

mrs_blkjak's picture
mrs_blkjak
Posts: 92
Joined: Apr 2013

So, last we updated, he was recommended to start chemo for collecting duct carcinoma and we had requested a pathology review from Mayo. B wanted to wait on these results before starting chemo, and that hasn't come back yet. He was told to stop taking Votrient a couple weeks ago, and has been sick since that time....fever, chills, sweating, pain....feeling lousy. they did lots of tests to rule out infection, including another ct on Monday to rule out an abscess in his kidney. Everything was clear. But the ct showed that the tumors had grown in the last couple of weeks, and this is likely why he's been feeling so lousy. They recommended, based on tumor growth, that he start chemo right away instead of waiting on Mayo.

Wednesday, he got a call to come in right away to do more blood work to rule out testicular cancer. Instead of? In addition to? He did the blood work and we were called in yesterday to speak to the local oncologist. Apparently, UW did their own review of the pathology since we were unhappy, and have now decided that this is NOT kidney cancer. It is possibly testicular cancer, and one of his markers for that came back high. But its not clear. He has no primary in his testicle, and an ultrasound yesterday confirmed this. However, apparently testicular cancer can do this. So basically, at this point we move forward with chemo for TC and if that works, that confirms the diagnosis. If it works, the pain should start to decrease within a couple weeks of starting treatment. He starts Monday. It is five days straight, then the following two Mondays, then start over again. He will have a ct scan after six weeks. 

We will keep you guys updated. You have all been so incredibly supportive throughout all of this. We cannot tell you how much we appreciate that. Seven months into this and now a complete change. On a postive note, if this is the right diagnosis, he has over 50% chance of cure even with as widespread as his cancer is!

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Wow - what a turnaround. And now I feel in the awkward position of hoping for TC (just doesn't sound right).

What a rollercoaster you guys have been on! Please keep us posted and we'll keep sending positive thoughts and prayers.

angec's picture
angec
Posts: 664
Joined: Mar 2012

WOW!  Ok, so a new direction! I am with Alice, I hope they have their finger on the pulse of this situation. A 50% cure rate sounds workable!  Did you post on Smart Patients to see if their are others that have TC?  Maybe they can give you a heads up!

I sure hope he feels better, praying for you two. You have been through alot but are really standing firm and soldiering on, making us proud!  Please keep us posted. Hugs!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I never would have thought I'd be hoping for someone to have TC, but at 50% it sure beats what you were looking at.  You guys have been through hell, I pray they've got it right and things turn around quickly for yo from here on.  Godspeed.

TillieSOK's picture
TillieSOK
Posts: 246
Joined: Jul 2013

Ernie, meenie, minie, moe.....

I'm like the rest!  I'm cheering for TC to be the minie and there to be no moe!  50% sounds like amazing cure rate!  GO! BLKJAK!!

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

Mrs. Blkjk,

     What a shock for you guys, but, what an amazing cure rate!  Hoping and praying for the best! Please let us know how everything goes.

                                            Love and prayers for good health!

                                             Brenda

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

Blimey! That was a turn up for the books! You never do know what's just around the corner, but you would never see that one coming would you? Your sheer determination has brought you to this point!!  I will be praying for 100% results from the chemo! All the best:)

Djinnie x

cran1's picture
cran1
Posts: 129
Joined: Mar 2013

Hope everything turns out. I read a little about T cancer seems very doable. Keep up the good fight.

todd121
Posts: 641
Joined: Dec 2012

And that this is good news.

I don't know much of anything about TC, but one of my good friends had it about 10 years ago. His had spread to his lungs. He went through the treatment and has been cancer free since then.

Has to be frustrating, but I sure hope the best for him.

Todd

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

You were so kind to offer strenght and prayers for my sister when you visited the colorectal board that I wanted to offer mine to you.

I see that there is a possible change in the diagnosis.  I can't even imagine this happening.

I hope that the designated treatments work well and that he is at the top of the success stats.

May your kindness to other be returned to you and hubby 10,000 fold.

Marie who loves kitties

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