Anybody else dealing with this?

AceSFO

My partner has stage 4 colon cancer with metastasis to the bone (sacrum). We just got some scan results which show a partially collapsed lung, enlarged prostate and arterio-sclerosis. Aside from that, we're doing great -
Just wondering if anyone else has been through the same thing. Wondering if any of this could have been caused by the chemo (Xeloda, Irinotecan and Avastin) or the cyber knife treatments he got a few weeks ago. The lung may have been caused by the narcotics he's on, but we don't know one way or the other. I posted a similar message in the Caregivers forum but figured I'd post it here as well.
Thanks -
Adrian

Sundanceh

Adrian
Just wanted to touch base and say hello and welcome to the forum!

We have 2 members who may be able to help you and can definitely talk to you, they both have cancer in the bone.

They are:
robinvan - that is Rob
butterfly23 - that is Karyn.

Karyn, I hope I got your board name right.

Anyway, these folks will see your post and I'm sure that they will respond to you and give you great support. As far as we know, they might be the only 2 who have this - of course now your partner, but the list is "short."

Just thought I would bring the Welcome Wagon by to see you and let you know that "we" got your post - more members of the family will be along behind me to introduce themselves as well...really the best people that I know (ever)!

Take care for now
-Craig

Fb489

Yes
My husband was just diagnose with rectal cancer that spread to his hip bone and his liver.
We are overwhelm right now, he had to do a hip replacemant and eventually chemo.
he is very reluctant to do chemo. but hip replacement is very painful.
sacrum is very painful, is he in alot of pain.
my heart goes out to you, the sickness is very trying.

karguy

Welcome
Welcome to the forum,I'm sure you will find the answers you are looking for.You should start getting some soon.Good luck.

robinvan

Hi Adrian
We've connected via "private message". What nasty side effects! I haven't had to deal with any of those yet so can't help out there.

I'm dealing with various "pelvic issues" related to a combination of nerve damage in the sacrum and morphine. Half way through a 15 day radiation program with a consult with the radiation oncologists tomorrow. I think they are basically viewing this as a palliative program so I'll need to find a way to move things up a bit and pursue other treatment options, if there are any!

Keep in touch,

Rob; in Vancouver

butterfly23

Hi Adrian
Welcome! My name is karyn, stage 4 colon cancer, just found out 2 months ago it has spread to both lungs, I started chemo, xeloda, oxyaplatin and avastin, I only got to do 2 treatments,the also saw an area in the thorasic part of my spine, so from there I had to have 10 radiation treatments. They wanted to shrink the tumor in the spine first, I am starting up my chemo again on Thursday. Having it in the bone is very painful! Even with the medication. I'm trying to tough it out a little, so when I do need the potent meds, they will work, I do sometimes get nerve pain, and that is the worse! Hopefully when the chemo starts the pain will subside. I will keep you updated on what's going on. And Yes. there are only a few of us here where it has mets to the bone! Any questions feel free to ask.
Karyn

AceSFO

butterfly23 said:

Hi Adrian
Welcome! My name is karyn, stage 4 colon cancer, just found out 2 months ago it has spread to both lungs, I started chemo, xeloda, oxyaplatin and avastin, I only got to do 2 treatments,the also saw an area in the thorasic part of my spine, so from there I had to have 10 radiation treatments. They wanted to shrink the tumor in the spine first, I am starting up my chemo again on Thursday. Having it in the bone is very painful! Even with the medication. I'm trying to tough it out a little, so when I do need the potent meds, they will work, I do sometimes get nerve pain, and that is the worse! Hopefully when the chemo starts the pain will subside. I will keep you updated on what's going on. And Yes. there are only a few of us here where it has mets to the bone! Any questions feel free to ask.
Karyn

Hi, Karyn,
Good to meet you
Hi, Karyn,
Good to meet you and thanks for writing. I was telling Rob in Vancouver that my partner did "cyber knife" treatments for his sacral tumor (some places call it radio surgery). If it's available where you are, it might be worth asking about. His tumor covers a large area inside his sacrum and the cyber knife team told us they had successfully treated sacral tumors much larger than his. Success being measured in terms of killing the tumor, reducing pain to a manageable level, and no recurrence at that site. They put the success rate for him at about 80%. He just did it the last week of September so it's still kind of soon to know if it worked. And, it's painless and free of side effects - kind of unusual for a cancer treatment.

How long have you had the met to the bone? I can only imagine how painful that is from seeing what he's going through. Good luck with the chemo - he did Oxalyplatin in his first round of chemo two years ago and it was pretty nasty. I hope it's easier on you.

Thanks again for writing, and I'm glad we're in touch
Adrian

johnrolf

AceSFO said:

Hi, Karyn,
Good to meet you
Hi, Karyn,
Good to meet you and thanks for writing. I was telling Rob in Vancouver that my partner did "cyber knife" treatments for his sacral tumor (some places call it radio surgery). If it's available where you are, it might be worth asking about. His tumor covers a large area inside his sacrum and the cyber knife team told us they had successfully treated sacral tumors much larger than his. Success being measured in terms of killing the tumor, reducing pain to a manageable level, and no recurrence at that site. They put the success rate for him at about 80%. He just did it the last week of September so it's still kind of soon to know if it worked. And, it's painless and free of side effects - kind of unusual for a cancer treatment.

How long have you had the met to the bone? I can only imagine how painful that is from seeing what he's going through. Good luck with the chemo - he did Oxalyplatin in his first round of chemo two years ago and it was pretty nasty. I hope it's easier on you.

Thanks again for writing, and I'm glad we're in touch
Adrian

Sacral Tumor/Cyber Knife
Sorry to dig up a 3 year old thread, but I just ran across this tonight after finding out today that my 75 year old father has been diagnosed with stage 4 colon cancer which has metastasized in the form of an adenocarcinoma in the sacrum. He is about to undergo chemo and radiation at MD Anderson in Houston, TX to try and get the lemon sized tumor to shrink down and alleviate some of the pain and take the pressure off of the nerves. Theres much more to the story, but his most pressing issue at the moment is this sacral tumor. I'm interested to hear more about the cyber knife treatment that you mentioned here. Were they able to remove the tumor and large was it? At this point it sound like the docs arent even considering surgery out of fear of paralyzing him.

SisterSledge

johnrolf said:

Sacral Tumor/Cyber Knife
Sorry to dig up a 3 year old thread, but I just ran across this tonight after finding out today that my 75 year old father has been diagnosed with stage 4 colon cancer which has metastasized in the form of an adenocarcinoma in the sacrum. He is about to undergo chemo and radiation at MD Anderson in Houston, TX to try and get the lemon sized tumor to shrink down and alleviate some of the pain and take the pressure off of the nerves. Theres much more to the story, but his most pressing issue at the moment is this sacral tumor. I'm interested to hear more about the cyber knife treatment that you mentioned here. Were they able to remove the tumor and large was it? At this point it sound like the docs arent even considering surgery out of fear of paralyzing him.

info
Hi johnrolf,

I don't know if the original poster is still around here to answer your question, but here's a link to an article that gives much good information on the topic of sacral tumors, cyberknife and more: Review of Rare Sacral Tumors

Hope all goes well for you,
Janine