Aren't I Special?!

Cazz said:

Thanks

Hi Katheryn,

Thanks for the good wishes, I need all the luck and prayers I can get. 

That is at least one good thing, all of my mets, including the calf muscle, are anal cancer.  Originally, I was told that a tumor on my hip bone was breast cancer but after exhaustive searching, no breast primary was found, nor have any of the other mets been breast cancer, so now my oncologist is coming round to my way of thinking that the pathologist was just having a bad day.  So saying, my liver biopsy was sent for genetic typing because it was unclear that it was only anal squamous and for this $5700 test the pathologist sent back a report saying that they were 95% certain that it was cervical cancer!  Oy!  Scans show nothing at all at the cervix so we are just taking that as anal cancer - its probably the HPV factor that is confusing them.  So you see, I am special in every way!

Carol

Oh jeez! Thinking of you & sending light & love.

kelle

I keep thinking of you and this so unusual turn of events for you.

It's good to know you're going to MD Anderson.  I hope they can help.

Janet

Cazz said:

Thank you

all for your good wishes and hopes for me, they really do help psychologically.  I am really hoping that they come through with something for me at MD Anderson.  It's even more important now because I got a call yesterday from the people at NCI in Maryland saying that the pathology lab had sent the slides I requested but they had labelled them as breast cancer taken from the hip bone.  She said that if I had breast cancer as well as anal that would make me ineligible for all of their trials.  I tried to explain that my hip tumor had been deemed to be breast cancer but there was no evidence of it anywhere else and even my own doctor thinks they were mistaken.  She said they would test it themselves and see - so now I wait another week or whatever.  I, and my doctor, are so mad because he had specifically told them to send the tissue from the liver tumor and then they somehow found this old tissue - which they had told me didn't exist when I asked to have it retested and if it is indeed breast cancer, then they have totally screwed me for 90%+ of all clinical trials.  My only hope is that the lab is so screwed up that they did indeed send the liver tissue, which is anal squamous, and just mislabeled it.  For six months the lab has told us that there was no hip bone tissue left because it got destroyed by testing and of course the tumor itself was killed by the radiation, and now, just when it can do the most damage, they someow miraculously "find" some and send it to NCI. 

Some days I think I must have been Attila the Hun in a past life because I can't think of anything else that would account for my relentless run of bad luck!

So, please, say a prayer for Attila and hope with me that the lab just screwed up the labelling and not the actual tissue.

Carol

What a fiasco.  I am so sorry this mix-up has set you back from a possible start in that clinical trial in the very near future.  I hope it will all get straightened out and you'll get a go ahead from them.  In the meantime, MDA has lots going for it too, so it's great that you are going there in the meantime.  I will definitely keep you in my thoughts and prayers.

Martha

Cazz said:

I called to NCI this morning to get an update on the pathology of the tissue that was labelled as breast cancer, but my doctor and I think was not breast cancer at all.  NCI said that the tissue was too corrupted for them to get a reading - yay!, but they also weren't able to confirm HPV positive so that makes me ineligible for the current trials.  I persuaded her to let me send another tissue sample - nice fresh stuff from my calf - for testing and she agreed that they would re-test from that.  Now I know that tested as anal and HPV positive so I may be back on track.

The trial coordinator pointed out that this retesting would set me back a few weeks and we agreed that I probably didn't want to wait that long.  Still, she agreed to the retest just so that I could move from being labelled "ineligible" and could keep my eligibility to be considered for future trials.  I was reading a post from the colorectal forum this morning and was excited to see that Karin has just been scheduled to start this very same trial for her colorectal cancer.  She kindly listed the timeline, which was just about five months from first application to start of treatment next week.  As she had her tumor harvested at the beginning of February, even if I somehow got fast-tracked, which is unlikely, it would be beyond August before I could even hope to start treatment, presuming that I passed all the interim testing and requirements.  Even if my body held up that long without treatment, I am pretty darn sure my mind and my nerves wouldn't!

Still, on the bright side, this means that when I go to MD Anderson next week I will be open for whatever they offer - if they offer me something - and won't have any second thoughts on whether I should hold out for the NCI trials.  My oncologist thinks that the trial MD Anderson is doing on Nivolumab/Opdivo is my best bet anyway, so fingers crossed that I can get into that.

I'll keep you posted on my experiences at MDA.

Carol

I will keep you in my thoughts and prayers that everything will work in your favor.  Please keep us posted.  Thanks.

Martha