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Cyberknife treatments

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Greetings! I'm new to this board and don't know whether anyone has posted on this topic before. In late September I had cyberknife treatments for metastasis to the sacrum, and I want to offer a brief report on that.

Cyberknife is a technique that delivers highly focused high-dose radiation. Because the focus is so precise and very little healthy tissue is exposed to the radiation, the technique can deliver the same dose of radiation typically given over six weeks in just one to five days. (My treatments were for three consecutive days.) The treatments are pain free, and the cyberknife team at Stanford Hospital, where I had my treatments, reports an 80% success rate. That is, for 80% of colon cancer patients with metastasis to the sacrum, the sacral tumor is stabilized and there has been no recurrence at the sacrum.

I was first diagnosed in March with a tumor in the soft tissue adjacent to the sacrum. It was causing severe pain because the tumor was entwined with the sciatic nerve. I had six weeks of daily radiation treatments in March and April, and by late May the pain had begun to diminish. I did well until mid-July when the pain roared back quickly and much worse than before. While an MRI in early June showed that the cancer had stabilized, a new MRI in early August showed that the cancer had spread through the bone itself from S2 through S4 and in a mass extending back to the anastomosis at the top of the rectum. Because the tumor was too extensive for sacrectomy, a risky procedure in any case, my doctors recommended cyberknife treatments, hoping primarily to reduce the pain as well as to halt further growth.

I had my CEA tested earlier this week, and the level has dropped from over 60 before the treatments to 12. It's too early still to evaluate the effectiveness of the procedure in reducing the pain (it initially causes swelling and increased pain), but the reduced CEA is worth a report, I think. I have also been on chemo, with irenotecan, avastin, and xeloda since early September, so that may have helped lower the cea too.

If anyone is interested in learning more about cyberknife treatments, here's the link to the Stanford program: http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/. Other hospitals that offer this treatment include Georgetown and Philadelphia. There are probably other locations that I don't know about. Please send me a personal message if you'd like to hear more about my experiences with the treatment.

Hope all of this is useful.

Best,

John

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

The March '09 diagnosis was actually the first recurrence. The original CRC DX was in October of 2007. And, for those not all that familiar with the sacrum the 5 verterbrae-like segments of it are numbered from top to bottom, S1 - S5. In a sacral resection they can safely remove S5 up to and including S3, but removing any of S2 would compromise the structural integrity of the sacrum i.e. making it impossible to stand. Ok - that's all. Just wanted to clear that up.
Adrian

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi John,

Welcome to the board- you'll find it's a very informative and supportive place to come to.
I am familiar with cyberknife, although I've not actually had it done. There is a very good cyberknife center near me in Vista, CA (which is in north San Diego county). There is also another one further south in San Diego, but a couple of people said they heard the one in Vista is better- maybe newer equipment- something like that. I always keep that option in the back of my mind if I should ever need it or qualify for it (right now I don't qualify for it- I have numerous lung nodules that are too small and too widespread). I'm currently taking chemo (Folfiri) for it. Back in July, I had a new liver nodule show up (the only one, as I had a liver resection in 5/08). My onc told me if the chemo didn't help that, then we'd look into cyberknife for it. Last scan a few weeks ago did show the liver nodule to be gone (!), but I keep on with the Folfiri to address the lung nodules.
Thanks for sharing about the cyberknife, though- I think it's becoming better known more recently. I'm glad it went well for you.

Take care-
Lisa

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

A very helpful description of the "cyber-knife" procedure. I'm looking for somewhere in Canada where they may do this.

Be well... Rob; in Vancouver

Sundanceh's picture
Sundanceh
Posts: 4340
Joined: Jun 2009

Hi, John

Great post and good information!

I've actually done the CyberKnife treatments - did 3 of them to help cut out the remanants of my tumor in my liver that RFA did not knock completely out.

It is highly effective and was a good treatment choice and I highly recommend it to anyone that qualifies.

-Craig

bdee
Posts: 305
Joined: Feb 2009

My doctor has ordered a PET for next Friday because he wants to try the cyberknife on me, if possible. My tumors are so spread out and they aren't IN any organ, but UNDER my spleen, liver, lung, and then one in my lower left quadrant and one in my lower right quadrant. These are the two my doctor is hoping can be treated with the Cyberknife. There is only one doctor here in Little Rock that does this treatment. He has to look at my PET before a decision is made. My onc told me I would probably lose my hair again and have extreme diarrhea.

Debbie

fringetree
Posts: 66
Joined: Dec 2009

John, I really hope you have great success and that your pain and further growth is eliminated. The CEA decreasing seems like really positive news. I have been doing a little research on the Cyberknife (there is one at Boston Medical Center, too), so it is great to hear other people's experiences. Thanks for sharing!

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Here's some info about how I've fared since the cyberknife treatments in late September. The primary reason for the treatments was to reduce pain, and the pain is dramatically less severe. I've reduced my pain meds some, and I plan to continue cutting down the dosage. Many activities -- such as standing still for more than a few seconds or walking slowly -- that were completely intolerable before treatments now cause no pain at all.

I should also report, though, that I had a bowel blockage three days after the treatments. My digestion continued to worsen until Nov. 28 when I was hospitalized with another blockage, and the only solution at that point was a colostomy. I had six weeks of standard radiation to the sacrum in March in addition to the cyberknife in September, but the surgeon who performed the colostomy told me that the radiated tissue in the pelvic area is like concrete -- vastly damaged. So the good news is that the treatments seem to have sterilized the cancer. The damage to the bowel, though, is extensive. No one seems able to determine whether the cyberknife contributed to the bowel damage or whether it was caused by the previous rad treatments.

All in all, I'm on the mend from the surgery, feeling better than I have since mid-summer, and looking forward to a long period of feeling good!

John

AnneCan
Posts: 3693
Joined: Oct 2009

Good to hear from you. It sounds like your recent surgery was successful; I am happy for you.
Take good care!

ruthied's picture
ruthied
Posts: 6
Joined: Sep 2011

HI after seeing your posts please can you offer some advice,i have a rectal tumour,i was misdiagnosed for so long that i had to have a stoma and now after chemo radiation they went to do a resection anterior and found strands on the s2 sacrum bone.
I am awaiting to see if anyone can help me otherwise i am told thats it other than chemo...i have had no spread to date and my last cea before surgery was 2 after being diagnosed it was 33.im 46 with my son whi lives alone with me hes ten..i cant understand how they are unable to help me.Im in the uk and after reading your posts please can you advise if having the Cyberknife has cured you or given time ??if so how much time..any storys or advice id be truly grateful,i am devastated Ruth

ruthied's picture
ruthied
Posts: 6
Joined: Sep 2011

PLEASE CAN ANYONE OFFER ADVICE

Sonia32's picture
Sonia32
Posts: 1069
Joined: Mar 2009

John who posted has since passed on. If you make a new post someone will be able to jump in and help you. I'm from the uk as well, glad you found us.

Sonia

ruthied's picture
ruthied
Posts: 6
Joined: Sep 2011

Hi Sonia the freinds and family here in the uk are trying to help me ...after many scans and two referals they have found that the whole of my sacrum is involved bones 1 to 5 I find this amazing as i have had so many scans and MRIs and now after moths they have come up with this and they want to remove my Sacrum but they need a bone surgeon to restructure my pelvis...the expertise is not here and i have since found a surgeon in New york who is willing to look at my scan in a view to doing the op which is a complete sacrectomy..im told this would cure me as i have no distant spread...The Dr is called Narayan Sundaresan has any one else heard of him ?? or any other doctor who has done this as the UK said the expertise was in the usa

Im having others try to raise funds for me if you go to my site www.helpruthie.co.uk it will tell the story so far ...I am hoping some one on here or some one who sees my story will offer advice ,,I am glad to see your a survivor Sonia xx

charliesangel
Posts: 24
Joined: Dec 2009

Hi there ruthied, my father had/has the exact same recurrence as you, in the S1 and S2 nerve roots and sacrum bone... in Australia we don't have Cyberknife however we have now gone overseas twice for Cyberknife and he is in remission. He was diagnosed with the recurrence two years ago.

Don't be angry they did not find the recurrence straight away, it was almost a year of agony and lots of different scans for my father before they found the recurrence. It is extremely difficult to find a sacral recurrence...

We are also trying to find a surgeon who will remove the tumour as although he is in remission, several doctors have told him that at some point it will start to grow again. If you have any luck with Dr Narayan Sundaresan please let us know here.

I wish you the best of luck with everything.

Caroline
x

ruthied's picture
ruthied
Posts: 6
Joined: Sep 2011

Dear Caroline

I finally found a Dr in the UK Dr Sagar of Leeds General who is going to perform a complete Sacrectomy to try to cure my bowel cancer

I know this holds a lot of disabilities but i have to do this as I have an 11 Year old son

My website holds my story www.helpruthie.co.uk and if anyone else is interested in this op they also do it in Rochester

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