My life is surging ahead - lots happening

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Kathryn in MN
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My life is surging ahead - lots happening

Postby Kathryn in MN » Sat Aug 18, 2012 3:05 pm

The generosity of family, friends, and in particular others in the CRC community have just blown me away! I am so blessed to have you all in my life. My new bed has been ordered. I laid on one like it while the paperwork was done last night. After a day of laying for two separate planning scans (and setting up two separate body frames) my pain levels were quite high. Laying on my current bed only makes that worse - sitting up with a chair that has a low back is my best situation. But laying on that sleep number bed, adjusting the head and feet to the "zero gravity" position, and taking the mattress down to 35 was heaven! I told the salesman I was going to sleep in the store each night until they deliver my new bed! ;)

Actually I will be spending a lot of my nights at Hope Lodge at the U of MN until my new bed arrives. I think the room has two twins and a recliner. I will probably sleep in the recliner if it works out. If any of you have ever donated to the American Cancer Society, this is one of the programs they support. They have Hope Lodges near many major cancer centers, and patients (and one caregiver) can stay for no charge. While I am not that far away from the U of MN, I am just far enough that especially this time of year (with football games starting and the State Fair starting), the commute takes a long time and is very stressful - not a good thing when in pain, fatigued, and on pain meds (I need to take them to be able to lie in the right position for radiation). I will save on gas, stress, and parking (even with my ticket validated, yesterday cost me $9 - without validation it would have been $22).

The Tomotheraphy machine they are using is the only one in our state (Mayo doesn't even have this). It is in high demand and requires a lot of set up time and work for each patient - and more-so for me with my situation. There is a high risk of paralyzing me if this isn't done exactly right for the largest most active met at T6. They are also treating T1 and T2, my shoulder and my collarbone. I don't think they can do anything about T5 - it has had a lot of prior radiation, and that met is smaller than the others. They will have the planning done and do my first treatment next Wednesday. I will know then how many treatments I need and if they decide to do all my treatment on the one machine, or if I will have just T6 done on that machine, and the rest on a separate machine, requiring a separate appointment. That was the original plan, but they are now working towards doing everything on the Tomo if I can tolerate the needed position long enough.

I have an appointment next week with a medical oncologist there too. It is time to try to move to a major cancer center where I get full input from medical oncologists, radiation oncologists and surgical oncologists - not just my medical oncologist who is very good, but focuses almost exclusively on chemo (other than initial resection). They present each patient's situation to a the full board once per week, and have access to a lot of equipment, trials and studies. Plus my primary clinic and primary hospital are in their system, so I wouldn't go through any more confusion trying to get all the needed records between doctors. If I have labs in my suburb, any doctor or hospital within the system can pull them up. I'm hoping they can make a plan that works for me not to have to go to their location more than once per month - but use my primary clinic for labs, and my primary hospital for infusion. I'll find out more next week.

I also want to switch to a major cancer center because of the uniqueness of my situation I still cannot find a single case like mine of never having any organ involvement at all, yet getting bone metastasis. I wonder if there is any possibility of a 3rd primary, or if there is something else unique about my situation that would warrant treating it differently than the more standard protocols. At a research and teaching facility they are more likely to dig deeper into this for me.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining

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Re: My life is surging ahead - lots happening

Postby cptmac » Sat Aug 18, 2012 3:14 pm

Hi Kathryn,

I sent you something on facebook as well. But if you do see Dr. Greeno, this is what he looks and sounds like.

I know that he found the right treatment for me, and I know you'll be well taken care of here. I'll also send you a PM.

Take care, and you are in all of our hearts and prayers. You've been a wonderful advocate of this disease and have done so much to help the many.

If you lose your hair, so be it, but I love you in short blond curls.
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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Re: My life is surging ahead - lots happening

Postby fritts44 » Sat Aug 18, 2012 5:57 pm

Hi Kathryn. It sounds like you have a great plan, as I expected you would! Hope Lodge sounds like a fabulous organization, and I'm so glad you can utilize their resources. I'll be thinking about you this coming week, and I hope you can get the tomography treatment fairly soon.
Lee F
RC dx 12/16/10
resection & perm colo 12/17/10
8 rounds chemo, 28 rounds radiation
finished 8/26/2011
clean scope 9/20/2011
clean CT scan 12/26/2011

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Re: My life is surging ahead - lots happening

Postby keepcalmcarryon » Sat Aug 18, 2012 8:10 pm

I had a hard time lying still on the proton machine. So they gave me a fentanyl lollipop just before treatment treatment and it helped a lot. I was already on pain meds but the lollipop was necessary. Hopefully you won't need it but thought you might want to know just in case.
9/07 t3 n2
exc. biop, Xelox, Rad
06/08 NED
03/09 PET-pelvic LN
06/09 rad tx
10/09 exp.lap; can't find LN
05/10 Stage IV, lung nodes
04/10 Xeliri, Avastin
06/10 PET-lung ok
11/ 10 failed surg ln
02/11 Proton tx
7/11 failed clin. Trial
10/11- xelox

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Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: My life is surging ahead - lots happening

Postby mymom » Sat Aug 18, 2012 9:14 pm

Thinking of you.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

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Re: My life is surging ahead - lots happening

Postby Icesk8tr » Sat Aug 18, 2012 9:40 pm

Wishing you all the best with your treatment plan. You are amazing!

Stage IV CC 2010

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Re: My life is surging ahead - lots happening

Postby Georgie » Sat Aug 18, 2012 10:08 pm


That bed sounds magic! I hope it gets to you ASAP! Wishing you success with the RT, it all sounds pretty full on. I am sure you are meeting it head on too. I am keeping you in my thoughts.

Nuclear Medicine/PET Tech
Stage 3 T4N1M0 Rectal Ca diag 1/11 at age 29
Clinical trial (chemoradiation) 12 wks incl FOLFOX
Surgery 14 June '11
Post op infection
Iliostomy reversal 12 Sept '11
NED 6 years!
2017 Stage II Breast cancer triple positive
BRCA2 mutation
Bilateral mastectomy, chemo, herceptin

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Location: Midwest

Re: My life is surging ahead - lots happening

Postby Cj51 » Sat Aug 18, 2012 11:20 pm

Keeping you in my prayers, Kathryn.

DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
10/15 NED

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Re: My life is surging ahead - lots happening

Postby NWgirl » Sun Aug 19, 2012 12:14 am

Excellent plan Kathryn. Praying for you.
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: My life is surging ahead - lots happening

Postby jacekica » Sun Aug 19, 2012 6:05 am

Hope all will start quickly, I am praying for you. It is great you will be on graduation.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Joined: Thu Jun 23, 2011 12:46 am

Re: My life is surging ahead - lots happening

Postby Fede » Mon Aug 20, 2012 2:14 pm

It sounds as a good plan, I wish you the best... It will work well. I had seen some videos of thomotherapy and it s interesting.

A kiss for you

"Caregiver to father stage IV CRC"
Researching for liver options

michelle c
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Joined: Wed Dec 02, 2009 3:58 am

Re: My life is surging ahead - lots happening

Postby michelle c » Mon Aug 20, 2012 4:05 pm

It sounds like a great plan, Kathryn. Praying for you.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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Re: My life is surging ahead - lots happening

Postby nbrandt » Mon Aug 20, 2012 6:07 pm

Sounds like you are on to a great plan. Thank you for sharing all your research for Mn Resources. Prayers from a fellow Mn CC survivor.
DXCCT3N2aMx 5/20LN
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: My life is surging ahead - lots happening

Postby lauragb » Mon Aug 20, 2012 6:40 pm

Here's to comfort in your new bed and successful treatment. Sending light and prayers your way.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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