Finally got the update done... Hope it makes sense.

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jmarie
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Finally got the update done... Hope it makes sense.

Postby jmarie » Sun Oct 30, 2011 2:40 pm

Friday was a very crazy day, I had been up since 2am trying to control the pain and anxiety with little relief. While I was getting ready to go in for the Thoracic and Head MRIs, the nurse of a Rad Onc at Mayo called and asked me to rush in because the Rad Onc wanted a consult before the MRI, which had been changed to a Head, cervical, thoracic and lumbar MRI all at once. I guess she could tell I was really frazzled. She asked how I was holding up, I told her I was in a lot of pain and worried about laying down for a long MRI(3-4hrs), she said "yep we need you in ASAP, Doc will get you some meds but hurry". So we rush in, I really liked him. He said the main concern was that T10-11, the one causing the most pain, they were afraid it is in the direct radiation field from my lung Cyberknife. If so, I would need surgery to debulk and rebuild that vertabrae. So while I was in the MRI he was going to call my Baptist Rad Onc, a nuerosurgeon at Mayo and my Mayo Onc. Also they couldn't wait until Monday for the Lumbar and Head MRI so I was in for a lumbar, thoracic, cervical and head MRI. A three hour minimum MRI, he offered to postpone the MRI until Monday when they had my pain under control, I said absolutely not and that I would be in the phych Ward if we waited that long, I was going to at least attempt the MRI. He asked what Meds I had taken so far, an hour earlier I had taken 4mg dilaudid and 1mg Ativan, at 2am when I woke up in pain I doubled back up on my fentynal patch, but that hadn't had time to kick in yet so technically I was only on 25mcg of fentynal. He was shocked that I was functioning and coherent on 4mg dialuded and 1mg Ativan And he told me to take 2 more diaudid and 1 ativan. Went straight for the MRI, by the time they got me onto the table I was very loopy.

I did pretty good, only needing to stop once because I was so hot that sweat was running down my face. So they pulled me out for 5 min to cool off, wipe my face down and take all the blankets off of me. Between the meds and the noise I kind of felt like I was in a trance, not really sleeping but not obsessing or freaking out.
After my MRI's I went back down to the Mayo Rad Onc for the results. I was given an IV dose of Decadron 10mg and Protonix 40mg. And within 10 or so min the MRI results were up. Its not pretty.

:arrow: Partial collapse of C7 vertabral body w/ 30-40% reduction in vertabral body height centrally, enhancing marrow infiltrating disease throughout C7 w/ evidence of epidural disease in the prevertable soft tissue and ventral epidural space. The ventral epidural tumor is more pronounced on the left side and extends into the C7-T1 left Neural Foraman. Mild flattening of the left ventral cord surface @ the C7 level epidural tumor.
:arrow: Marrow infiltrating neoplasm involving the majority of T10 w/ extension of the tumor into the ventralepidural space, mostly on the left, into the left T10-T11 neural foramen, and into left paraspinal soft tissues. The epidural tumor causes mild compression of the left anterior aspect of the spinal cord at the T10 level.
:arrow: Large marrow infiltrating lesions involving L2 & L4. No evidence of Lumbar epidural tymor. Small amount of ventral epidural tumor in the Sacral canal at S3 level.
:arrow:These are the ones they are most concerned about and after radiation we are considering some sort of surgery with a bone cement? to fill in the collapsed parts of the vertabraes.
:arrow: If all that wasn't bad enough... Small round marrow infiltrating lesions in T2, 4, 9 and 11 consistant with other met vertabral lesions. evidence of small bone islands versus sclerotic mets in T1 and T5 vertabral bodies. Minimal disc bulging in many upper and mid thoracic discs. Small marrow infiltrating lesions in L1, 3, 5, S1 and S3. Enhancing expansile lesion involving right L3 pedicle, transverse process, superiorarticular process and lamina.
:arrow: A total of 18 vertabrae affected!!! That is scary crazy! On another thread I started a while ago titled "don't Tell Me", that was partially because everyone(family wise except my hubby) kept brushing me off, thinking my pain was all in my head or I was being too paranoid. For some reason saying "I told you so" just doesn't make me feel any better right now :x .

It was then decided it would be more expedient and accurate to go back to my Baptist Rad Onc for radiation. The radiation field was too close to my cyberknife area and the fear was that my spinal cord would get fried. So I we rushed there for my simulation, then they let me take about an hour nap and once they had worked through all the other patients came back for me. Did the first of 10 treatments, on T10-11 and C7. I was working with my Rad Onc's assoc(Dr O), mine (Dr. S) is out of town until tues. These are the worst of the vertabraes, but L2 and L4 are pretty close behind, not causing as much pain. Dr O said that Dr S might modify the plan to include L2 and L3 on Tues.

So on the way home I recieved phone calls for appts with the Nuerosurgeon on Monday. I needed to go buy a cheap neck brace for the weekend(UGH!) and Monday morning go get fitted for real brace, hopefully it will be more comfortable and breatheable. This is to give more support to my neck muscles and help prevent C7 from fully collapsing. I can already tell a differance in pain level as long as I wear this cheapo brace.

The scariest part of all this is that 7 weeks ago a Pet scan showed possible METS to C7 and L1. The next week I went into the ER with severe back pain. They did a cervical and Lumbar MRI 6 weeks ago(from tomorrow) in the ER to see if that what was causing the pain, The MRI showed both areas were negative for cancer. Dr. O said the first thing he thought of was the MRI was misread, so he went and looked at the pics and he said there was no sign of any malignancy on the MRI. So either the MRI was not done properly or cancer spread like wildfire through my back. Very little mention of the rest of my organs has been made so I am thinking everything else is somewhat stable. The MRI did mention some Lymph nodes, but only a few new ones. I am kicking myself because Dr O. was insisting on doing radiation on C7 and I refused. Could or would that have stopped the spread to the rest of my back? Who knows... The most surprising thing to me was all this spread to my back and the existing tumors in my lungs, liver and lymph nodes and not one mention of stopping treatment or hospice. I don't know why but that really shocks me, not that I am ready to give up or anywhere near but it just surprises me. It is scary to think of how close I was/am to becoming paralized.

Tuesday morning on my way to have the CT scan done that tipped us off to all this, I was at a complete stop with Lilli in the back seat. A car behind me came to a screaching halt, I flinched thinking we were about to be hit. When I looked back this small SUV had came to a screaching halt completely sideways about a foot from the back of my car. At the time I was just freaked out thinking Lilli would have been crushed, but that car would have probably crushed my back into pieces. Its very scary to think of what could have happened to us.

So I think that is everything, I will add on if I think of anything else. I better send this as Lilli is climbing on me and I am afraid she will erase this long post. I am doing OK, we have this week arranged so I won't be home alone, working on what to do for next week.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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jmarie
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Re: Finally got the update done... Hope it makes sense.

Postby jmarie » Sun Oct 30, 2011 2:59 pm

P.S. Bump behind my ear is a skull bone met. 6mm lesion in Right Temporal lobe. Never had a Brain scan, so no way of knowing how long that has been there. Was that the needle that broke the camels back?
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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KellyBelle
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Re: Finally got the update done... Hope it makes sense.

Postby KellyBelle » Sun Oct 30, 2011 3:09 pm

After all my worrying, I'm surprised (and very thankful) that you took the time to update us.

Please take care of yourself; we love you and I admire your strength every day.

I have no words other than I'm so very sorry. But I'm still wishing for the best outcome, as I know you are.

Gentle hugs,

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

boweltumor
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Re: Finally got the update done... Hope it makes sense.

Postby boweltumor » Sun Oct 30, 2011 3:20 pm

It's good that doctors aren't talking hospice. There is hope..praying for you

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CRguy
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Re: Finally got the update done... Hope it makes sense.

Postby CRguy » Sun Oct 30, 2011 3:23 pm

jmarie wrote: Its not pretty.

You are right Jess, it is not. I am just glad that they are moving so quickly and competently to get you stabilized and pain-managed. Sounds like you have a great team working with you.

You are still my hero and I wish I were able to do something to help you :(

Prayers and best wishes to you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

beth568
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Re: Finally got the update done... Hope it makes sense.

Postby beth568 » Sun Oct 30, 2011 3:27 pm

Oh, Jess, that's a lot to handle all at once. :( I can't believe all that could have happened so quickly...but one never knows with this stupid disease. I'm glad that they've got you started on radiation, and hope that your pain gets under control. There's still hope as long as you have a doc willing to move forward.

I hope you're getting some peace and rest this weekend. Your strength is an inspiration to all of us.
Beth
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13
http://www.mysemicolon.net

NWgirl
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Re: Finally got the update done... Hope it makes sense.

Postby NWgirl » Sun Oct 30, 2011 3:34 pm

I can't help but cry to read your post. Thank you for taking the time to update us - I know we all hoped for better news - yourself included. I am at a total loss for words. I wish there was something I could do to help. I'm sure we all feel that way. Sending strong thoughts your way. *hugs*
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Re: Finally got the update done... Hope it makes sense.

Postby graham_montrose@hotmail.com » Sun Oct 30, 2011 3:42 pm

I had to read your post twice. It was so much bad news and you are presenting it with such strength and calm. This will help you through the next steps. Let us hope they are pain-free and allow you and your daughter to enjoy each other in the way you both deserve.

Surroundedbylove
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Re: Finally got the update done... Hope it makes sense.

Postby Surroundedbylove » Sun Oct 30, 2011 3:48 pm

Dear Jess,

Thank you so much for taking the time and effort to update us. It is scary and you're right - not pretty. I admire your strength and stamina that is coming through in your post.

I'm so thankful that your team is moving so quickly to get you some comfort and to try to prevent paralysis (it sounds like). Prayers are with you - more than just daily.

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
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tammylayne
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Re: Finally got the update done... Hope it makes sense.

Postby tammylayne » Sun Oct 30, 2011 3:54 pm

Jess...with everything you have going on in your head and in your heart, thank you for taking the time to share what is happening. We have all been so worried about you.

I wish there were words that could make this all better, but of course there is not. The fact that your doctor's are taking immediate action is a good thing. All my healing thoughts are with you that the pain subsides and they are able to reverse some of the damage.

You are an amazing lady....and an amazing mom. Be kind to yourslef...

Sending you gentle hugs...

Tammylayne
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

RixInPhx
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Re: Finally got the update done... Hope it makes sense.

Postby RixInPhx » Sun Oct 30, 2011 4:03 pm

x2 on taking the time for us.
Your beastie seems to have developed quite the bone appetite; sure hope it's a wimp for radiation.

Take it as easy as possible and control the pain, hope the week's treatments are fruitful.

Hugs and swinging chickens for you, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

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Gaelen
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Re: Finally got the update done... Hope it makes sense.

Postby Gaelen » Sun Oct 30, 2011 4:06 pm

Jess - it sounds like your team is on alert and on point, and that's some comfort.
But you're right - none of this is pretty.
I've heard of the surgery using bone cement to stabilize spinal vertebrae...it's encouraging that they're even thinking in that direction. Right now, your docs are treating the things which are most immediately dangerous - and that's what they and you should be focused on.

Updating us with what's going on as the days go forward...well, if that fits into your life, Jess, it's appreciated.
But please, don't ever interpret this community's posts prompting for an update as an obligation, or something that you have to satisfy. You're not obligated to do that, now or ever.
Focus on you, focus on Lilli, focus on each minute. Take the time and space that you need to cope with the treatments ahead. Keep the docs on top of your pain control.

My strongest thoughts, Jess.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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Re: Finally got the update done... Hope it makes sense.

Postby clarabelle64 » Sun Oct 30, 2011 4:18 pm

Dear Jessica
thank goodness they are beginning immediate treatment.....I'm so peed off about those rotten bone mets....they will nuke them for you which will be a huge relief.....I hate this freaking CC so much! You are constantly in my thoughts Jessica darling......Your Doctors sound wonderful and on the ball.....
Clarabelle XX
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

KimT
Posts: 675
Joined: Sat Feb 20, 2010 8:53 pm

Re: Finally got the update done... Hope it makes sense.

Postby KimT » Sun Oct 30, 2011 4:25 pm

Wow that sucks. Sorry. Wish I was closer so I could help.
Last edited by KimT on Sun Oct 30, 2011 5:43 pm, edited 1 time in total.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

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barbara jayne
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Re: Finally got the update done... Hope it makes sense.

Postby barbara jayne » Sun Oct 30, 2011 4:32 pm

Gosh Jess !
Just to let you know you're in my thoughts all the time, you are amazing !
Your team of medics sound like they are really working hard for you.
Concentrate on your treatment there are a lot of people wishing you the best.

Hugs and strong vibes Barbara x
DX. Colon Cancer (Cecum) stage 3
Right hemicolectomy Jan '08
2/22 L.nodes positive
Oxi and Xeloda
Xeloda discontinued
due to DPD enzyme deficiency
Lynch Syndrome
11 years NED
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Barbara Allen https://www.facebook.com/barbara.allen.927


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