sacral metastasis request for information

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John in CA
Posts: 42
Joined: Fri Feb 06, 2009 1:47 pm
Location: San Francisco, CA

sacral metastasis request for information

Postby John in CA » Fri Aug 28, 2009 11:33 am

Greetings, Friends.

I am seeking some very specific information about possible treatments for metastasis to the sacrum.

I was diagnosed with stage 3 colon cancer, low in the sigmoid area, in late September 2007. I had a sigmoid colectomy on Oct. 4, 2007 followed by chemo, "xelox," from November 2007 to May 2008. I did well until early this year when I began to have excruciating pain in my right buttock. The cause was found to be a tumor in the soft tissue adjacent to the S2 and S3 areas of the sacrum, beginning to grow into the bone. I had 6 weeks of daily radiation treatments, ending in late April. The pain receded until mid-July when it began to increase. It quickly became extreme, and an MRI shows a new tumor at the sacrum, this one entirely within the bone, extending from S2 to S4. The pain is presumably caused by pressure of the tumor on nerve roots. The presacral tumor shows no growth and was probably killed by the radiation.

I'm hoping some of you have specific information about possible treatments and the effectiveness of treatments for this very specific, somewhat unusual tumor. My oncologist is seeking specialized opinions from experts, and I'm hoping for your own expertise in the form of your own experiences and any resources you may know of.

I know of three treatment possibilities right now:

1. Surgery to remove part or all of the sacrum.
2. Chemo with Xeloda, Irenotecan, and Avastin ("xelira").
3. Treating the pain only.

Further radiation may be very limited in dose and duration or impossible because of the radiation treatments a few months ago.

Have any of you had a full or partial sacrectomy? Know of any sources where I could learn more about this procedure, its potential risks and benefits, its likely success in relieving the pain, how likely the surgery may be to delay or reduce the likelyhood of another recurrence elsewhere?

Do any of you know how effective xelira -- the drug combination above -- may be in reducing the pain and in delaying further spread of the disease? My oncologist tells me that it has a 50% chance or less of reducing the pain.

I'm currently taking ms contin and roxanol for the pain, and that is effective but also limits my activities somewhat. Do any of you have information about other treatments for extreme cancer-related pain, including nerve blocking, drugs other than narcotics, alternative methods including hypnosis, acupuncture, biofeedback, etc.?

Thanks very much!

John
Stage III colon T4N2M0
Sigmoid colon resection Oct. 2007
Xelox 11/07-5/08
metastasis to sacrum and anastomosis 2/09
radiation 3/16/09 to 4/24/09

Guest1
Posts: 131
Joined: Wed May 13, 2009 10:12 am

Re: sacral metastasis request for information

Postby Guest1 » Fri Aug 28, 2009 12:07 pm

My father has/had (he is in hospice now) tumors in his sacrum that shifted, causing cauda equina. This is a unique risk of sacral tumors of which your doctor must be aware, since failure to treat cauda equina within 24-48 hours can result in paralysis, incontinence, etc...

As for treatment, I posted a message regarding proton beam therapy a little while ago:

viewtopic.php?f=1&t=9593

The patient in the article received successful treatment of sacral tumors in lieu of removal of her sacrum. I don't know whether your prior radiation treatments will preclude you from receiving proton beam therapy.

Guest T
Posts: 234
Joined: Sat Dec 13, 2008 12:09 pm

Re: sacral metastasis request for information

Postby Guest T » Fri Aug 28, 2009 12:17 pm

I tried to post before I'm not sure what happened hope it does not come in twice. My husband is in the same boat almost. The surgery is very invasive. We went to a surgeon at MOFFITT who wanted to remove the sacrum but he would not be able to tell how much until he looked at the bone under a microscope during surgery. You can always decide beforehand how far you are willing to go and tell you surgeion not to go to the point of you being in a wheelchair. It's not a good place t o get a met if there is such a thing as a good place. There is a women on this board that was able to control pain with a pump. Her name is Lifes2short. You may want to read her post to see what she did. My husband is currently on Folfox/avastin but I'm not sure how much it will do for the bone met.s I have a post on this forum looking for a answer. I'm glad to see you post so I can follow what you do. I'm sorry I don't have any answers. Have you been to a major cancer center if not you should go.

Good Luck!

Toni
Husband Rectal stage 3C 4-06
LAR 4-06
6 weeks Rad & Xeloda
Chemo Folfox 6 mos.
Hernia repair 10-07
NED Until 2-09
folfox/avastin June -09 - Dec-09
Surgery 2-19-2010
perforation another surgery 3-17-2010
Path report shows cancer still active

mich
Posts: 76
Joined: Fri Aug 27, 2010 11:07 pm
Location: Los Angeles

Re: sacral metastasis request for information

Postby mich » Tue May 26, 2015 11:14 pm

John how are you doing? did you get rid of the spine mets?
Dh DX 1/07 stg 4 age 48
colon & liver resect
1 yr chem
3yrs NED
6 mnts chem no oxy
6/12 node active
7/12 peri node excised
8/12 Rad & chemo
4/13 Lung met
lobe removed
11/2013 chemo
4/17/2014 Nodes
radiation/ not Erbuitux candidate
Cancer spreads ..starting Stirvarga
Lasted 9 weeks on stir varga
Passed away Nov2015

User avatar
trapbear
Posts: 74
Joined: Mon May 10, 2010 12:53 pm
Facebook Username: bill manning

Re: sacral metastasis request for information

Postby trapbear » Wed May 27, 2015 11:15 am

Please look at the dates. John passed away in 2011.
Bill
Husband Dx with Stage 3 CC in Dec 07
Xelox Jan-July 08
Lung mets Jan 09
Folfiri plus Avastin Mar-May 10
5FU plus Avastin May 10-current
2 liver mets March 13, continue 5 FU & Avastin
liver RFA Oct 13, hospice June 14, at peace Sept 2, 2014

mich
Posts: 76
Joined: Fri Aug 27, 2010 11:07 pm
Location: Los Angeles

Re: sacral metastasis request for information

Postby mich » Wed May 27, 2015 11:31 am

Thanks for the sad news. May I ask how would I have known that? Maybe there is a feature to this site I am not aware??
Dh DX 1/07 stg 4 age 48
colon & liver resect
1 yr chem
3yrs NED
6 mnts chem no oxy
6/12 node active
7/12 peri node excised
8/12 Rad & chemo
4/13 Lung met
lobe removed
11/2013 chemo
4/17/2014 Nodes
radiation/ not Erbuitux candidate
Cancer spreads ..starting Stirvarga
Lasted 9 weeks on stir varga
Passed away Nov2015


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