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Yawkey in Boston

mmeany's picture
mmeany
Posts: 8
Joined: Aug 2004

Hi All,
I hope the day finds you all with a positive experience.
I'm a 43 yo stage 3 rectal with 10 of 15 positive. I have completed my 6 mo. of irinotecan and started to live life again. Problem is the follow up CT then MRI showed two < 1cm leisions on my liver. Had a PET scan Friday and don't know the results for sure but have my suspicions. I have an appt. with Dr. David Ryan at Yawkey Cancer Center at Mass. Genl. Hosp. on Monday.
MY question to all of you is this;
Has anyone heard of this group and are they leaders in Colorectal research? I understand there may be some experimental treatments that could still lead to a cure in my case.
Secondly, I fell pretty good, can anyone tell me what I can expect as this progresses? Has anyone had experience with surgeries to the liver and would you be willing to share your experience with me?
Thanks a bunch and hopes of good health to all.
M

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

I too have crc w/ liver mets. I'm 43 yrs old in good shape and I too feel pretty good, even after 6 doses of chemo. I was dx'd in Dec 04 and I have been on the folfox regimen for 6 cycles and will be starting my 7th tomorrow. I havent had surgery yet, however, my chemo seems to be working. After cycle 3 I had a catscan and it showed that the 3 liver leasions (1.5cm) were no longer visable. I get a PetCTScan this coming week and I'm hoping the leasions on my liver are gone. There's hope, check out all your options.
I wish you well...
Buster

jana11
Posts: 708
Joined: May 2004

Hey there M,

I am a 34 yr old cancer survivor. I had stage 3 w/ 3 positive nodes, but then got a lung met. Had radiation, chemo x 2, surgery x 2; and now NED (no evidence of disease.)
Just to make you feel better. I am from New England, went to med school at UMass in Worcester - but now live in Houston. I get all my care at MD Anderson. When my lung nodule was discovered my onc told me if I wanted a second opinion I should go to NY or Boston. I think he talked about Dana Farber, but MGH is a great place.
Cure is ALWAYS a possibily. Read Lance Armstrong's book and you'll see. Stay strong. You can always as Dr. Ryan about research and get some names of MD's at Dana Farber; get as much info as you can. Go to a hospital with a large GI center. I don't know if MGH has one, I bet Dana Farber does. But I just don't know.

I haven't had liver surgery, but my thoracotomy was a snap compared to my rectal resection. It all depends on the location of the tumors and the skills of the surgeon.

Best of luck... jana

Moesimo's picture
Moesimo
Posts: 1075
Joined: Jul 2003

I had my surgery at Brigham and Women's Hospital. It is connected to Dana Farber. I have a great oncology surgeon. If you want his name, let me know. It probably wouldn't hurt to have another opinion. He did my rectal surgery, but I know he also does liver cancer surgery.

Good luck

Maureen

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello, I just wanted to let you know that I had a liver resection 2 years ago for a met to the liver. I was 32 at that time. It was about the size of a walnut apparently. It was discovered at my first checkup after 6 months on 5-FU/Leukovorin. Following the liver resection I had Irinotecan/Xeloda like you say you had. I have not had any more problems w/ the liver since then. In case you do not already know, the liver is the only organ in the body that can regenerate itself (like a lizards tail!). They can remove up to 70% of it, I believe, and it will grow back in a matter of weeks. Amazing.
You also said you feel good - I have never felt bad through this process w/ the exception of the chemo drugs. I have been off chemo for 1 1/2 years now. I did have 2 lung mets removed in October, but thankfully they were "encapsulated" and no additional chemo was necessary. They think they had been there from the very beginning - when I was diagnosed, but took this long to develop to the size that they could be seen. So far so good. At any rate, what to expect, IMO the emotional aspects of surviving cancer are much more difficult than the physical. You have to believe that you will be cured. I hope that you will have the option of a liver resection.
Take care, Susan.

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi M,
Hope this gets to you in time. I live outside of Boston, and have gotten my care at Newton Wellesley Hospital. My brother in law is an oncologist in Florida; his wife has metastatic breast cancer and comes back to MGH for some of her treatments/consults. He had highly recommended Dr Ryan to me when I had a question a while ago about a second opinion.
Good luck to you, Judy

madu
Posts: 53
Joined: Mar 2005

Know this is coming too late for you but wanted to respond anyway. When I finished my treatment in FL and was getting ready to move back to TX, I asked my radiation oncologist and oncologist, where was the best place to go for colon cancer. They told my MD Anderson was the best in the country for CC. but, of course, you couldn't go wrong with Sloan Kettering. I have to say I never went to a cancer center and never regretted it. I was diagnosed 8/98 (age 31) with stage IV rectal sigmoid cancer with a 3 cm met to liver. I had both a colon and liver resection. I think whether you can have a resection depends on size and location of met. After my surgery, my onc was sure mets would return and he told me the plan would be to catch them early (under 2 cm) and then do RFA - radio frequency ablation - basically stick a probe in and microwave the sucker. If they were larger he wanted to consider a port into the liver. I'm happy to report that I've been cancer free and in remission for almost 7 years. Hope all went well with your appt.!

Heidi

mmeany's picture
mmeany
Posts: 8
Joined: Aug 2004

Hi All,
Thanks for all your input. I went to meet Dr. Ryan and Dr. Cusack today. It went OK but not great. It looks like they want me to go for another six months of chemo. I had some problems early on with 5fu so that is not an option. They are thinking a cocktail of oxaliplatin, irinotecan, etc. for three months and then a CT scan to see if they stay the same or shrink. If that is the case, three more months and then liver resection. If not, no surgery. Not looking forward to it but guess that's what needs to be done.
Hope you are all staying well and enjoying life.
See ya,
M

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