Topic: peripheral edema following cyberknife treatment

Hello, all--

My father completed CK treatment in early October, and is now experiencing severe peripheral edema in his legs. The swelling makes it incredibly painful for him to get around. He has been prescribed diuretics and is keeping active, avoiding salt, taking potassium and keeping his legs elevated when he sleeps. Nothing seems to be working, and today he started taking a water pill as well.

Does anyone have any experience with this type of edema? I do not know if it is a result of the tumor necrosis (resulting from the CK treatment), interfering temporarily with his liver/kidney function, or an indication of the progression of the disease. I've read on this site about the option of having the fluid drained, but none of his doctors have mentioned this to us. I'd be grateful for any advice or input on this situation.

Happy New Year!

gk

Re: peripheral edema following cyberknife treatment

Hello gk.....sorry to be hearing about your Dad.  There have been many discussions on this board in re: to fluid retention which can have many causes as you might hear from others or, you might want to use the Search function to read up on the many threads explaining this issue.  The diuretics and plenty of water should show some positive results.  When was the last time your Dad had a scan and lab tests?  I am hoping that the diuretics has shown itself to solve the problems and you are enjoying a Happy New Year.
Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: peripheral edema following cyberknife treatment

Hi, Marions--

Thanks for your good wishes!

My father did have a scan a few weeks ago that showed no visible change in the tumor. However, my dad's Cyberknife doctor is on vacation, and so the scan was interpreted by his oncologist. This doctor did say that it could be that the mass in the scan is the dead tumor that the body has not yet flushed out.

On the Cyberknife web site, I asked about any possible connection between the CK treatment and edema. Two doctors responded, saying that it's probably not CK-related, and that my dad should keep taking the diuretics and elevating his legs as often as possible. I sent away for a leg pillow from LoungeDoctor, which I hope will be an improvement on the pillow-fort he keeps building at the foot of his bed with regular pillows.

Best,

gk

Re: peripheral edema following cyberknife treatment

Hi GK. Mu husband finished his CB Dec 22nd and the only side effect has been tiredness. Did your dad get real tired and if so do you remember how long it lasted? Otherwise mine is doing just fine. Oh, and our radiologist said the tumor will take time to shrivel up and eventually will just be a piece of dead tumor. It will take a few months but perhaps that is what your ONC saw.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: peripheral edema following cyberknife treatment

gk....have recent blood test been done, also? Elevating the legs and decreasing the salt intake should show some improvement.  Have you noticed a difference when your Dad does just that?  Is the water retention  in his legs only,or do you notice it anywhere else on his body?  If you do not see an improvement within the next day or so, I would call the onoclogist, again. 
Sending tons of good wishes, and please, stay in touch.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: peripheral edema following cyberknife treatment

Hello, all--

Hope your New Year is filled with health and happiness. I just spoke with my dad, who filled me in on his post-Cyberknife experiences thus far. We really appreciate all your feedback and good wishes.

Lainy-- My dad did have fatigue following CK for several weeks. He also had one instance of nausea. Other than that, he's tolerated it without any major side effects. Thanks for passing along your radiologist's description of the post-CK tumor shriveling up over a period of months. That's something I hope your husband and my dad can look forward to. I will keep you posted as to his experiences.

Marions-- Since the edema, my dad hasn't had a blood test, but he's scheduled for one on Wednesday, I believe. The last blood test he had was on 12/19, and he was told then that things were OK. He has been trying to keep his legs elevated (the CK site said "toes above nose") and avoiding salt. However, he still has the same amount of swelling in his feet and legs despite the diuretics. As far as fluid retention in other areas, we are unsure, because there's hardness in his abdomen from a previous injury (long story) when he had his rectus abdominis removed and placed on his shin. Anyway, that hardness has been present since about a year and a half before his diagnosis of cc.

Best,

gk

Re: peripheral edema following cyberknife treatment

Hi All, My research suggest that yes tumors killed with with cyber knife (Necrosis) can at times cause blockage of fluid to drain properly, in turn causing edema.  In some cases an additional surgery is needed to remove dead tumor just for this reason.  This is an individual situation depending on how large of dead tumor and location is was in.  There is alot more information regarding Dead tumors.  Use your normal search and put in Necrosis tumor blockage and you should get plenty of information and different things that can be done. Inflammation plays a role in causing edema as well and radiation cuases the inflamation.  I was drained three times just from external radiation with a one liter bag each time until the last one was practically nothing.

Wish you all the best!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: peripheral edema following cyberknife treatment

Oh my gosh, Jeff. If there is one thing we can always count on in this world its you. I shall now be prepared if Necrosis happens. So far so good just tiredness for T. My brother is visiting from Chattanooga and T feels bad as he can't do to much. He is having a lot of digestion problems (bad bloat and extreme gas) and we are not sure if its from the CK or the stent for the ureter. But we see the Oncologist Friday. Good as usual to see you come on as it is always a signal that you are still fighting strongly. We send our love to you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: peripheral edema following cyberknife treatment

Hi Lainey... Sure hope Mr. T gets his bloat and gas straightened out soon.  That can be so dog gone uncomfortable.  Is Teddy allowed to take Ibprofen?   I found after my external radiation some bloating and the oncologist told me to take 800mg every 4-6 hours for the anti inflammatory effects.  Actually Hospice has me take for about a week after each fracture.  Works good.  I still keep taking all my other Waynes World of Drugs though.  Will check in Friday and see how all goes.  Mr. Support will be right on your tail end.
Bless ya Both,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: peripheral edema following cyberknife treatment

Jeff, we have NEVER thought of the bloat being inflammation instead of just bloat!  What a novel idea! T is going to try the IBU. I tell you man, you are just something else!!!!  T is very happy the Cardinals won yesterday!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: peripheral edema following cyberknife treatment

gk....I had contacted Catherin Bonneti, Patient Relation Manager for Cyberknife.  I believe that she had answered your mail, also.  Just in case, I thought I post some of her response:

I have not heard of edema in the legs following a CK treatment in other parts of the body. I know sometimes there is swelling or edema at the site of radiation. For example there have been some cases of brain edema following radiation to a brain tumor. This can definitely happen.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: peripheral edema following cyberknife treatment

Hi, marions--

Yes, I did get this message from Catherin, which confirmed a lot of what I've read elsewhere about inflammation and CK treatment. I'm particularly interested in whether it's possible that the inflammation from CK might be interfering with his liver/kidney function, therefore causing the edema. I guess there just isn't a lot of info out there about how CK interacts with cholangiocarcinoma specifically.

*Speaking of cyberknife, I think Barbara Walters is going to be interviewing Patrick Swayze tonight about his CK treatment for pancreatic cancer, which should be interesting.

Thanks, marions!

Re: peripheral edema following cyberknife treatment

gk....information re: cyberknife is being collected.  Catherin had made numerous phone calls and spoke with several practitioners re: edema.  I will have the opportunity to be speaking with a few physicians, and I will make sure to bring up this subject.  Please, keep us posted and thanks so much for pointing out the upcoming TV special.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER