UPDATE on scan

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Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

UPDATE on scan

Postby Kathleen808 » Fri Sep 13, 2013 11:08 pm

Dear Friends,
I apologize for posting and then deleting the post. We had not talked to our daughter yet and I did not want any news to get out on social media. She is away at college and we spoke to her yesterday evening.
Dick's pet scan on Friday showed growth in lung mets (largest is now 2.2cm), enlarged lymph nodes (we think that is why the leg was swollen) and growth on his adrenal gland. We were quite shook up on Friday and of course I came right to you. Then I realized we had not told our daughter and I pulled my post.
We are meeting with Dick's local onc tomorrow and calling Sloan Kettering back. Some of you remember that Dick was all set to go to Sloan last fall and hurricane Sandy hit. We were going to a doc who was going to find a new chemo mix for Dick. Once we were cancelled because of Sandy, they said to call back when there was growth. So, I am calling Sloan tomorrow morning.
We are going to have a biopsy of a lymph node done and then we want to do all the tests on the biopsy. I believe it is DNA testing and tests to see what specific drugs kill Dick's specific tumor. We know there is a lab in Greece and one in LA. Who has had these specific tests done? Can you please send me the info? We know that the cancer changes to "get around" the chemo and that there may be drugs used for different types of cancer that will work better on Dick's current cancer. All information is appreciated.
I'll be in touch.

Aloha,
Kathleen
Last edited by Kathleen808 on Sun Sep 15, 2013 12:46 pm, edited 3 times in total.
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: ughhhhhhh growth

Postby so-scared » Fri Sep 13, 2013 11:11 pm

I am so sorry to hear this. It seems it is one challenge after another. Sending you the good thoughts and prayers as requested. I sure hope they come up with a good plan for him!
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

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kirac
Posts: 258
Joined: Sun Jun 09, 2013 10:34 pm

Re: ughhhhhhh growth

Postby kirac » Fri Sep 13, 2013 11:16 pm

Thinking of you and hoping you get a plan in place.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

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Icesk8tr
Posts: 1068
Joined: Sat Apr 30, 2011 11:37 am

Re: ughhhhhhh growth

Postby Icesk8tr » Fri Sep 13, 2013 11:23 pm

Kathleen my heart goes out to you and Dick. This is distressing news. Dick has been through so much. I hope the Onc comes up with a good treatment plan. I will keep you both in my prayers.

Hugs,
Christine
Stage IV CC 2010

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: deleted

Postby O Stoma Mia » Sat Sep 14, 2013 2:41 am

Kathleen808 wrote:...As I type I am waiting for a call from Dick to see what his scan from today said... I will update.



Hi Kathleen - Whenever you and Dick are ready to give us an update, we'd love to hear from you. Take care...

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Ashlee H.
Posts: 2435
Joined: Fri Oct 09, 2009 11:50 pm
Location: Southern California

Re: deleted

Postby Ashlee H. » Sat Sep 14, 2013 8:57 am

I'm not sure why you deleted the post, but know you must have your reasons. I've followed your story all these years and know you recently posted about Dick's leg swelling. I hope whatever is going on, it's just another bump in the road and it get resolved. You are well loved around here and have a lot of people waiting to hear the update.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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edinaman
Posts: 1108
Joined: Wed Oct 26, 2005 10:15 pm
Location: Minnesota

Re: UPDATE on scan

Postby edinaman » Sun Sep 15, 2013 8:06 pm

I'm sorry about the results of the scan. Just letting you know I am thinking about you and Dick, and wishing you the best.
Jeff
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

clarabelle64
Posts: 1022
Joined: Sat Nov 14, 2009 2:27 pm
Facebook Username: claire beaumont

Re: UPDATE on scan

Postby clarabelle64 » Sun Sep 15, 2013 11:12 pm

Dear Kathleen....sorry to hear this latest news about Dick........I'm sure there will be treatment that can help Dick....
Thinking of you and your family
Clarabelle
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

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Kathryn in MN
Posts: 2970
Joined: Mon Sep 14, 2009 12:25 am
Facebook Username: Kathryn Finn-Blume
Location: Minnesota & Mexico
Contact:

Re: UPDATE on scan

Postby Kathryn in MN » Mon Sep 16, 2013 1:52 am

There is a new all-inclusive mutation test that checks for everything - many mutations both inherited and not. I think it can give us a lot of answers that can help with making decisions on alternate off-label treatments once we have worn out the standard ones.

I am pushing for this testing. I have an appointment in 8 days with a genetic counselor. Most of the medical community is convinced that I do have Lynch Syndrome even though my original testing 4 years ago came back as probably negative. Everything in my family history on the paternal side along with my tumors being resistant to 5-FU, having major issues with endometriosis and IBS my whole life, having 2 primary cancers under age 50, and more make them suspicious. An oncologist at the U of MN suggested that he does not believe what was dx'd as cervical cancer was cervical because it did not behave like cervical and I also did not have HPV. Another oncologist and a genetics counselor both agree - they all think it was endometrial (uterine). Two of the most prevalent Lynch cancers for women are endometrial and colon. Mine was very aggressive, which is not usual for cervical. I started off with ASCUS - a procedure to remove those cells got clear margins, but 3 months later it was back and a stage worse, at LSIL. This same pattern just kept going at each re-check moving to HSIL, CIN 1, CIN 2, Carcinoma in Situ, and then stage I. I finally had a hysterectomy, but afterwards I still had cancer - at the top of the vagina, making it stage II. After cone biopsies, cryoablations and several LEEPs, I didn't have much cervix left at all. After a few procedures my OB/GYN was shocked about how aggressive it was and worried something else might be wrong with me to compromise my immune system. He had me tested for HIV. (I was separated from my first husband, going through a nasty divorce and his behaviors through the years had my doctor concerned - and it turned out rightfully so.) I was very scared, but thank goodness I was negative! So there was no explanation for the aggressiveness. But now the theory was that I had endometrial cancer that invaded the cervix and the vagina. There are more mutations for Lynch now that I was not tested for. But along with those, I really want to be checked for other mutations too like BRAF. Or maybe I have some really weird mutation that might show my tumors could be treated with drugs approved for a different type of cancer.

This new test is released to a limited amount of providers for early access - so I need to find how I can get it now. I don't want to wait until 2015 which is the target date for full availability.

http://www.sltrib.com/sltrib/money/56829727-79/test-myriad-cancer-tests.html.csp
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
http://www.caringbridge.org/visit/kathrynblume


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