To Erika or any other Stage IV's with mets to liver and lung

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musiclover
Posts: 37
Joined: Tue Sep 19, 2006 7:16 am

To Erika or any other Stage IV's with mets to liver and lung

Postby musiclover » Sat Nov 25, 2006 8:22 am

Erika, did you have mets to the lungs in addition to the liver? I am trying to find some encourging words for my friends who's rectal cancer is not responding to any chemo. He's about to get on a trial - very experimental using a new drug barely used on humans. Are there ANY stage IV's out there who have survived with lung mets (and several liver mets as well)? His have grown with each new chemo regimen, are very numerous and not operable. Need some hope here. Thanks.

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Sat Nov 25, 2006 8:30 pm

hi,
i think i saw someone on this board with both lung and liver mets carol i think is who it is. go through the posts and look for her. i have liver mets but not lung mets going for surgery soon to get rid of these nasty things. good luck to your friend hope everything works out.


missjv

tennislover
Posts: 16
Joined: Fri Jun 02, 2006 9:35 pm
Location: Discovery Bay, CA
Contact:

Im a Stage IV Survivor

Postby tennislover » Sun Nov 26, 2006 11:23 pm

Hi there! I saw your post and I wanted to write back. I am a stage IV survivor. I had mets to the liver and lung. The doctors told me that i had about half of my liver covered in tumors. I was diagnosed in march 2006 and I went through 6 weeks of radiation and Xeloda. I had surgery in July and then started chemo. I have done Folfox with Avastin. I just got word last week that i am in remmission. I know you said that your friend is having problems with the tumors responding but I think that there is always hope as long as they are still willing to try! Please let me know if there is anything that I can answer for you! I will keep your friend in my prayers.

Andrea
Posts: 55
Joined: Tue Sep 06, 2005 9:47 pm
Location: Poquoson, VA

Postby Andrea » Tue Nov 28, 2006 7:05 am

I was diagnosed July 2004 with liver and lung mets. There is a new procedure called SIR-spheres. It was approved by the FDA to treat colorectal cancer with unresectable liver mets. I've read some great stuff about the procedure. It is minally invasive and requires no hospital stay. Few hospitals are approved to do the procedure. The company that makes SIR-spheres is Sirtex. Maybe you can contact them and find a hospital doing the procedure. Later on I plan to have radiation treatment on the lung mets since there are only a few.
Andrea

guest

Postby guest » Tue Nov 28, 2006 10:12 am

SirSpheres cannot be performed on someone who has previously been on Avastin as it would have partially destroyed the blood supply to the liver tumours making it impossible to deliver the spheres to the tumour.

Most hospitals will not perform the procedure on someone with multiple mets either.

Erika
Posts: 73
Joined: Wed Oct 05, 2005 6:46 pm
Location: Blacksburg, Virginia

mets

Postby Erika » Tue Nov 28, 2006 10:44 am

musiclover-
I did not have lung mets.
Patients in clinical trials get very good care and the best treatment available, plus a possible new treatment. There is hope that he will have success (whether that be shrinkage, stopping growth, etc) in the newest phase of his treatment. There is hope that he can find a surgeon to operate. There is hope that chemo can improve his quality of life. There is hope because he is fighting. Tell him that he is not alone; there are many many of us who fight with him. Our stories are different and unique, but we're all hoping for the same thing.
love,
Erika

Andrea
Posts: 55
Joined: Tue Sep 06, 2005 9:47 pm
Location: Poquoson, VA

Postby Andrea » Tue Nov 28, 2006 11:31 am

I've been on Avastin for over 2 years now and have extensive tumors in both liver lobes. Before the SIR-spheres procedure the radiologist does an angiogram and blocks off main arteries as to prevent the spheres from entering them. If the spheres would reach other organs then you are not a candidate.
Andrea

Hannah
Posts: 287
Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Thu Nov 30, 2006 11:16 pm

The best chance at getting rid of any of these tumors permanently is surgical removal. While some doctors will "write off" patients with both liver and lung mets, many are coming around to the idea that this can be dealt with. Information about a lot of the procedures below is new but promising.

A treatment plan may mean one of many things - it all depends on how many mets there are, how big they are, exactly where they are located, etc. I think that the key is to find a doctor who is well-versed in the possibilities of all of the options and finding a combination plan to move forward with treatment, if that is what your friend wants to do.

I would specifically ask the doctor about:
- systemic chemo to try to shrink all tumors
- radiofrequency ablation (RFA) for either or both liver and lungs (it is done on both)
- chemoembolization or hepatic pump to the liver
- SirSpheres to the liver (as someone already mentioned, this should not be ruled out without specific information about location/size of the tumors, and possible testing of the blood vessels in the liveer)

I would urge your friend to find a doctor who will look at all of these options with the end goal being to shrink the tumors in both locations until they are surgically resectable. That may mean RFA (radiofrequency ablation) to the lung mets and then systemic chemo to shrink the liver mets until they can be removed surgically. It may mean chemoembolization and/or SirSpheres to the liver (which sometimes can be done after Avastin, though it can complicate things) and RFA to the lungs. There are a lot of options and again, it all depends on the specific situation AND of course what the doctor is willing to try.

If the doctor is saying that your friend isn't a candidate for any of these procedures, there should be specific reasons for that. If the doctor is unaware of any of these procedures, find someone who is. If your friend wants to move forward with treatment and the doctor is unable or unwilling to make a plan, get a new doctor.

Good luck and keep us updated.
:)Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Fri Dec 01, 2006 12:42 am

HI,
I AGREE WITH HANNAH. IF YOUR FRIENDS DOCTOR IS UNABLE OR UNWILLING TO TRY SOME TREATMENTS GET ANOTHER DOCTOR. I WAS TOLD WHEN I WAS FIRST DIAGNOSED STAGE 4 THAT I WAS NOT A GOOD CANDIDATE FOR SURGERY CAUSE I HAD 3 METS ON LIVER IN 3 DIFFERENT SECTIONS OF LIVER BUT ALL ON SAME LOBE, WELL DOC WHO TOLD ME THAT WAS NOT A SURGEON. I WENT TO A SURGEON AND WAS TOLD I AM A CANDIDATE FOR LIVER RESECTION AND IT IS SCHEDULED FOR NEXT FRIDAY THE 8TH. JUST BECAUSE 1 DOCTOR SAYS ONE THING YOU CAN GO GET MORE OPINIONS IM SURE AS HELL GLAD I DIDN'T LISTEN TO THAT 1ST DOC AND WENT TO A SPECIALIST IN THIS TYPE OF SURGERY AND NOW I WILL UNDERGO CURATIVE SURGERY WITH THE INTENT OF CURING MY CANCEROF COURSE THERE IS NO GAURUNTEE, IT MIGHT REOCCUR, IT MIGHT NOT, ONLY TIME WILL TELL AND SINCE MY PRIMARY WAS SMALL AND I HAVE NO LYMPHNODE INVOLVMENT I HAVE A GOOD CHANCE OF BEATING THIS CRAP WHEN I WAS BASICALLY TOLD BY 1ST ONCO THAT I WAS A GONNER GOOD THING I BLEW HER OFF AND WENT ELSEWHERE CAUSE IT COULD HAVE BEEN A DEATH SENTENCE IF I LISTENED TO HER. GOOD LUCK.

MISSJV

musiclover
Posts: 37
Joined: Tue Sep 19, 2006 7:16 am

Postby musiclover » Fri Dec 01, 2006 8:36 am

I've already sent Mark's scans to the best doctor on the West Coast performing ablation. His tumors are too numerous and they cannot perform the procedure. None of the chemo has helped to shrink them either. I'm on top of all treatments since I spend hours online researching. The only options at this point are the trial (E7820 and Erbitux); Erbitux with Irinotecan (Irinotecan by itself only made tumors grow); treatment in Mexico though I've yet to find a clinic I trust; Kushi diet with practitioner who treated friend's dad with brain cancer left for dead and who's now in remission and thriving. I'm afraid more chemo will further poison his body and create other permanent side effects. Thanks for listening.

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Fri Dec 01, 2006 9:30 am

HI MUSICLOVER,
WOW YOU ARE IN A TOUGH SPOT, ESPECIALLY IF CHEMO HAS NOT HELPED. WHAT ABOUT AVASTIN? HAVE THEY TRIED THAT? THIS CANCER REALLY SUCKS AND WHAT IT DOES TO PEOPLE SUCKS EVEN WORSE. I DON'T KNOW WHAT TO SAY EXCEPT KEEP DOING WHAT YOU ARE DOING AND RESEARCH EVERYTHING YOU CAN THERE IS STILL HOPE. CHRISTINE ON THIS BOARD HAD HER SURGERY AND IS DOING GREAT. SHE IS IN CALIFORNIA LOS ANGELES AREA MAYBE TRY TO MESSAGE HER AND SEE WHERE SHE WENT I KNOW FROM READING HER POSTS SHE WAS ALSO LACKING THE ALMIGHTY HEALTH INSURANCE SO MAYBE SHE CAN POINT YOU IN THE RIGHT DIRECTION. GOOD LUCK.


MISSJV

Guest

sapheneia

Postby Guest » Fri Dec 01, 2006 9:04 pm

http://www.sapheneia.org/

Check out this site. Might help.

Hannah
Posts: 287
Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Fri Dec 01, 2006 11:37 pm

Hey there musiclover,

If Mark isn't a candidate for RFA to either the liver or the lungs, I think that you need to meet with an interventional radiologist ASAP and ask specifically about chemoembolization and/or SirSpheres for the liver.

In addition to Patrick Ellison at Sapheneia in Jackson, MS, you can find an interventional radiologist close to you by going to: http://directory.sirweb.org/eseries/scr ... n=customer and selecting Cancer/chemoembolization AND/OR Cancer/radiofrequency ablation. There are at least 295 interventional radiologists in CA who perform liver ablation, and at least 83 performing chemoembolization. Keep in mind that just because one doctor can't or won't perform a procedure doesn't mean that another doctor won't do it, especially one who may be more experienced.

In terms of chemo & other agents - Mark may be able to combine chemoembolization/SirSpheres with a systemic chemo regimen. Please remind me why he is only a candidate for the trial or the Irinotecan/Erbitux? Has he failed on everything else? He hasn't already taken Avastin, has he? Also, are they talking about FOLFIRI + Erbitux or just Irinotecan & Erbitux without the 5FU & leucovorin? I would think that Mark would be able to do FOLFIRI + Erbitux OR FOLFIRI + Avastin (it's not completely clear if one is better than the other), or maybe the doctors would let him do FOLFIRI + both Erbitux AND Avastin to try to pack the most punch? I don't know, but I would think that one of these options would be "better" (meaning better proven) than the E7820 trial. I'm just trying to come up with some creative ideas and combinations here.

Also, please take a deep breath and don't focus too much about the long-term effects of chemo - chemo really is the best chance of trying to shrink the tumors to the point where they are surgically removeable, which I am guessing is still his goal at this point. At the same time, he doesn't want to be miserable and chemo definitely does that, so that is always a balance to be considered.

I am wondering what Mark's mindset is at this point? Is he still wanting to fight for every inch and willing to do whatever it takes? Is he backing off of "treatment" decisions a little bit and looking more at quality of life issues? I know that he counts on you so much for information and support, and I know you realize that his attitude and wishes are going to be so important at this point, but it's so hard to keep it all in perspective.

I also know that you pretty much already know all of the things I'm saying, and that maybe none of us are helping much. I often think of you and Mark and wish that I had better ways to say things and better answers for you.

:)Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27

musiclover
Posts: 37
Joined: Tue Sep 19, 2006 7:16 am

Postby musiclover » Sun Dec 03, 2006 10:37 am

I already contacted Saphenia, was making arrangments for a trip to Jackson when a further discussion with a doctor there talked me out of it. He seemed to think, from my description of a recent CT, that it would be a waste of time.

Anyone know how to contact Christine? I'd like to pick her brain.

Mark's already had Avastin in a study with Oxaliplatin and Xeloda. Didn't work.

Thanks for all the posts. Will keep everyone posted on further happenings.


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