Long-term survival with spine mets??

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lovemyameliasky
Posts: 6
Joined: Tue May 08, 2018 7:51 am

Long-term survival with spine mets??

Postby lovemyameliasky » Wed May 09, 2018 9:14 am

Does anyone have any knowledge at all of long-term survival with spinal metastases? I was just diagnosed yesterday and from what I've read so far, spine mets are pretty much an immediate death sentence. Mine are all throughout my spine (neck to tailbone). Has anyone heard of any long-term survivors with this? If so, what treatments did they pursue? Thank you!

lovemyameliasky
Posts: 6
Joined: Tue May 08, 2018 7:51 am

Re: Long-term survival with spine mets??

Postby lovemyameliasky » Wed May 09, 2018 7:16 pm

So from the lack of responses I'm thinking...long-term survival with spine mets is just wishful thinking?

weisssoccermom
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Location: Pacific NW

Re: Long-term survival with spine mets??

Postby weisssoccermom » Wed May 09, 2018 8:02 pm

I have no idea....can only tell you that in my 11 years here on the board, I don't remember too many people with spinal mets. That's likely why you aren't getting a lot of responses. From what I know of people with other cancers who have had spinal mets (my friend had them with lung cancer and I have heard of breast cancer patients who get spinal mets), radiation is one option. I don't believe it is curative but rather a palliative approach to help and relieve pain. You have to remember though, that radiation to large areas of bones can and do cause the bones to become brittle.

I'm sorry that you are dealing with this and that you haven't been able to get responses from people on this board. Hopefully someone will be able to chime in with some other news. Do you know if they have definitively determined that the spinal mets are actually colorectal cancer mets? It is possible that you could be dealing with another primary.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
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LLVV
Posts: 187
Joined: Thu Aug 19, 2010 8:30 pm

Re: Long-term survival with spine mets??

Postby LLVV » Wed May 09, 2018 8:22 pm

Spinal and bone mets aren't as common as mets to other locations such as the liver and lungs with CRC. When my dad was diagnosed in 2010, I had a very difficult time finding much information about this online. Everything I read back then said it was very rare. Over the years, I have seen a few posts from other members who did get mets to either/or their spine and bones. In primary cancers such as breast cancer and lung cancer, it's much more common for patients to have mets to the spine and bones well before you see mets in other organs.

Originally, my dad was originally diagnosed with an unknown primary because his metastatic pattern on MRI and CT did not look like CRC and the pathologists both locally and at Sloan had a very difficult time diagnosing the biopsy taken from the tumor in his pelvis that was causing him a lot of pain for months. He had no symptoms of CRC. His only symptom was an unrelenting backache. It was only after some more testing and finally a colonoscopy that his CRC and second primary of kidney cancer were found. This may sound cliche but it's very true: everyone responds differently to treatment so you really can't base your trajectory on someone else's. Just find the best oncologist you can find.

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Long-term survival with spine mets??

Postby rp1954 » Wed May 09, 2018 10:12 pm

Most of our limited background is with patient-members who were in recurrances and/or had multiple treatments already. You still have more initial potential to have dramatic response to immune treatments or chemo, albeit CSF penetration adds uncertainties. For radiation with that much load and fine targeting, I would suspect the most advanced proton or carbon ion center might be a possibility, SBRT or IMRT being conventional with more limitations.

In this decade, medical miracles are more occasionally being issued, but you have to take decisive steps forward. My wife is a near miracle in others' eyes. For me it was more like a scattered cookbook of misplaced recipes unscrambled that represents common problems in mCRC and expands on recommendations from Life Extension Foundation.

One member here, sleen, got a miracle result with an experimental immune treatment.
A % of people match the specific criteria for PD-1 inhibitors with big responses.
Others have occasionally had huge responses to their chemo.

My wife's huge immune response is most important as an immediate step, for its "first aid - first day" aspect with easy availability, "over the counter", and "niceness". Something that got a huge response immediately, doable yourself with supplies from Walmart and health stores, appears broad spectrum, and did not disturb any chemo or surgery options later. In fact, it combined so well with basic 5FU oral chemo, to the point heavy chemo has been unnecessary. Because of my particular personal and technical background, we had a place to start, and my wife didn't hesitate. But most people never start or do 1/4.

Also I know we've used types and dosages of cancer inhibiting vitamins that penetrate the blood brain barrier. e.g. IV dehydroascobate content in sodium ascorbate (C), oral menaquinone-4 (menetetrenone, a human version of vit K2 with a transport protein), 60,000 iu cholecalciferol (vitamin D3).

A conventional 2017 paper: Spine Oncology—Metastatic Spine Tumors
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

stu
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Joined: Sat Aug 17, 2013 5:46 pm

Re: Long-term survival with spine mets??

Postby stu » Thu May 10, 2018 1:30 am

Hi ,
I have communicated with a couple of people with spinal mets . They are using mainly radiotherapy to contain the mets with some form of bone strengthening and systemic chemo . They are doing ok and have been diagnosed for over a year now . They are continuing in treatment .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mrshillsey
Posts: 7
Joined: Sat Oct 14, 2017 8:54 am

Re: Long-term survival with spine mets??

Postby mrshillsey » Fri May 11, 2018 11:06 am

My experience is that mets aren’t so rare with CRC- my Dad who passed away 12 years ago had mets in his bones on recurrence after surgery and a few clear years. And my husband was diagnosed in August 2017 and the staging PET revealed extensive bone mets right then. He’s still here and into round 16 of chemo- FOLFOX then XELODA and just started FOLFIRI. He’s seeing a dr for radiation on a new spine met causing him pain next week.

Sharing Hope
Posts: 11
Joined: Wed Oct 25, 2017 5:02 am

Re: Long-term survival with spine mets??

Postby Sharing Hope » Mon May 21, 2018 6:02 pm

I’m so very sorry to hear about your results. I don’t know the answer to your question, but I’m wondering if you could share any of your symptoms?

Again, this is troubling to hear and I’m so sorry you have to deal with this.
Mama w/2 Sons/Smitten Wife since 1988; BD/1968; Lifelong vegetarian; Non-smoker/drinker
6/16 Baseline Colonoscopy; Sessile polyps - adenocarcinoma near Splenic Flexure; CEA .8
8/16 Robotic colon resection of Descending Colon; 30 LN clear; Stage 1
9/17 Liver tumor found/abdominal pain; CEA 16.4; Stage 4
9/17-11/17 5 TC FOLFOX/5FU + Avastin
11/17 CEA 6
MSS - KRAS G12V Mutation
12/17 Hepatic resection of left liver lobe/margins involved; current CEA .8
2/18 - 4/18
FOLFOX 5FU 6tx

Krash
Posts: 4
Joined: Mon May 21, 2018 6:05 pm

Re: Long-term survival with spine mets??

Postby Krash » Mon May 21, 2018 6:16 pm

I'm so sorry to hear that you are going through this. If you don't mind sharing, what are your symptoms with spinal mets? I've been reading as much as I can but there isn't a lot of information. My wife had CRC 2.5 years ago (Stage 1) that was taken care of with surgery. She is now having some nerve issues and one of her doctors (Not Oncologist) has ordered a spinal MRI. The doctor thinks my wife is showing signs of MS but from my research, spinal mets share similar symptoms and with my wives CRC history, it seems more likely. I want to get this MRI over with so we can get some answers...I just keep thinking about it. Thanks for the info and keep on fighting. Almost everything I have read so far is that the spinal mets are secondary from Lung, Breast, and CRC and are treated though a combination of radiation and bone strengthening medications.


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