My husband was just diagnosed with stage 4 colon cancer. He has been healthy all his life and is just 35 years old. We have 3 small children and this news has been devestating. His tumor is sigmoid and has metastatic disease to the peritoneum and has porta hepatis with many lymph nodes and possible liver mets. He had to undergo an ERCP with stent placement to bile duct to relieve jaundice and delayed chemo start for 3 weeks. They do not want to operate now, but just chemo at first. We have received 2 opinions which are the same. Any suggestions on a large cancer center that may offer us some hope? He just completed his first FOLFOX6 regimen this week and is starting to have abdominal pain. His pathology is mucinous adenocarcinoma which is supposed to be very aggressive.
I am so sorry to hear your news...I can imagine how devastating it was to get this diagnosis, especially having three small children. I cannot advise on cancer centers as I do not live in the US but hopefully someone else will have information on that. It is good that you were able to get two opinions that were the same...that gives you more confidence in the treatment plan.
Do look after yourself. Being a caregiver myself (to my husband dx four years ago with Stage 111C rectal cancer and having lymphoma myself) I know how hard it is to see the one you love in pain and fear. I hope you have good family support to help you through the next few months.
Do post again. There are others on this board who are Stage 1V and who will be able to encourage you on your husband's journey to recovery.
Love,
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
Hello,
I read your post and I too am a caregiver with a husband undergoing Chemo (Folfox also) for Stage 3 colon cancer. He is 44. our one son is grown, thankfully, but I can only imagine what you are both going through. I think that being young, (35) gives him an advantage with treatment from what I've heard. I've read of many Stage IV survivors who are going forward with treatment and doing pretty well, so don't give up hope. My husband sat next to a guy getting chemo last week who was a stage IV and was doing well, also dealing with multiple tumours.
Look at each day as the gift that it is, keep the faith - and trust and reach out when you need to to people who can and will be helpful to you.
I wish you well.
I am so sorry to hear of your husband's diagnosis. He is so young to have to go down this road. All of you will be in my prayers.
On another board there is a 34 year old mother of 3, with stage 4 cancer who has started going to the Cancer Centers of America in Philadelphia. There are four around the US. One in Washington state, Oklahoma, Illinois and the newest is in Philadelphia. They provide a small apartment for those who have to stay for radiation, and they provide a shuttle back and forth to the center so you do not have to rent a car or get a cab. I do know that for the first visit, they pay your travel expenses. I do not know about subsequent visits. You can type the name in a search engine to find the site.
Rhona I am so sorry to hear of your husbands diagnosis. I am new to these boards, I have been lurking for a while but finally registered because I felt the need to write you because our situations are so simular. My DH was diagnosed with Stage 3 colon cancer back in March. They originally thought he had mets to the liver but it turned out to be fatty tissue. He had 12 limph nodes removed and it was in 7 of them. He is 42 years young. It is very scarey but I can tell you there is so much hope and treatment has come a long way. We also have 1 young child, 8 years old. It was very scarey, he just finished 12 rounds of chemo. The hardest part was telling our daughter. I never kept it from her, she is completely educated now and understands completely. The chemo was not as bad as I thought it would be, and he managed to work full time during all of it. He never lost any hair and never got sick. Now that he is done with chemo has has to have a cat scan in 4 weeks to make sure he is all clear, lets pray he is.
Good luck and my prayers are with you and your family
Thanks for sharing your story. I am glad to hear that things are looking good for you. I will keep you in my prayers. It is great to hear words on encouragement in a time like this. We have finished 1 round of chemo and his pain seems to have gotten worse. I don't know if this is good (maybe the cancer is dying) or bad because it has grown and is getting worse. We pray that it is the cancer cells dying. Our next chemo will start Nov 19th. Please keep me informed of your progress.
Rhona I am so sorry to hear of your husbands diagnosis. I am new to these boards, I have been lurking for a while but finally registered because I felt the need to write you because our situations are so simular. My DH was diagnosed with Stage 3 colon cancer back in March. They originally thought he had mets to the liver but it turned out to be fatty tissue. He had 12 limph nodes removed and it was in 7 of them. He is 42 years young. It is very scarey but I can tell you there is so much hope and treatment has come a long way. We also have 1 young child, 8 years old. It was very scarey, he just finished 12 rounds of chemo. The hardest part was telling our daughter. I never kept it from her, she is completely educated now and understands completely. The chemo was not as bad as I thought it would be, and he managed to work full time during all of it. He never lost any hair and never got sick. Now that he is done with chemo has has to have a cat scan in 4 weeks to make sure he is all clear, lets pray he is.
Good luck and my prayers are with you and your family
Chris
GeeGee,
I wanted to respond to your post. Your story and mine are so similar. My DH was diagnosed in April (Friday the 13th) with Stage 3 colon cancer and was 43 at the time. He also had a spot on his liver which turned out to be fatty? so that was a huge relief. He had 12 of 36 nodes positive. He is coming up on his 10th treatment of Folfox. Although he didn't suffer too much he did develop blood clots and was hospitalized for a week and is now suffering very bad neuropathy. His onc is going to reduce the oxiliplatin by 25%. He isn't able to work full time unfortunately but hopefully will be able to when this is all over.
Was your husband on Folfox also? I pray all continues to go well with him and hope you post good news when his scan shows clear. best wishes.
Backslide05, Yes my husband is on Folfox he wears a 48 hour pump twice a month. He does complain that his hands and feet a numb but not to bad. I am proud of him he has been really strong and possitive through all of this I and I think that is extremely important. I am so glad its over and pray everyday that he can remain clean to see his daughter grow up ! Good luck to everyone !
I just got onto this board. I was diagnosed with Stage IV cc with mets to the liver in July of 04. I was originally told by the great doctors in my state, that I had 18 months to live with treatment, but could die at any minute.
I went to a major cancer hospital.
Once I did, I signed up for a Stage II clinical trial. I've had no evidence of disease since September of '04.
Good luck.
Last edited by moderator2; 11-16-2007 at 11:21 AM.
Reason: posted contact info
that's a very encouraging story, and I'm glad you are doing well after your diagnosis. What time of regimen were you on during the clinical trial?
Was it a new chemo that was being studied at that time?
Best wishes for continued good health
Can I ask where you received treatment and what drugs you received? Also, do you know if the trial you are in is still open? My husband is stage 4. They quoted 2-2 1/2 years for survival. He is 35 yo with 3 young children. I cannot accept this to be true. I want to go wherever they can help him. His cancer is mucinous adenocarcinoma and has spread to many lymph nodes, peritoneal wall and they are not sure about liver-some ?cysts seen on last CT. We just started treatment with FOLFOX and are scheduled for round 2 next Monday.
That is encouraging! How quickly doctors seem to be able to give patients their opinion of prognosis. It is enough to make one give up! It just shows how wrong they can be. Keep well.
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
CPTMAC, I would be interested in knowing what hospital and what kind of treatmentm as well. It would be SO helpful if we could send PMs on this board. It is the only message board where you cannot post links to other helpful sites or send PMs. I was diagnosed stage IV with 2 mets to liver and 1 to lung in August 2006. Did FOLFOX6 + Avastin for 6 months. I am currently taking Xeloda (which doesn't have many side effects and it is a pill). Now my doctor is adding Avastin again because the nodule in my lung grew a little since my last scan 5 months ago! I'm sure there are lots of us stage IV's who are searching for any and all clinical trials, etc. I'm feeling good, but like everyone would like to get this beast into remission!
Anyway, I did a lot of research after being diagnosed and the doctors in my state offered me no hope. So I went to the U of Minnesota. Dr. Rothenburger is often quoted on colon cancer and is rated as one of America's top doctors. Dr. Nancy Baxter (who has since moved to another establishment in Canada, where I think, she is from) had discovered that it was important to take out at least 16 lymph nodes during colon cancer surgery. I love my oncologist, he is awesome.
So, the trial. The trial is no longer open at the U of MN but it may be open at Sloan Kettering.
Here is my treatment, only because I was discovered at stage IV. Some people started at Stage III, and then went on the trial after it spread to the liver.
So, I had my colon resected on August 13th, 2004. It was important that I heal well so that I could have my liver resected and a HAI pump implanted on September 13, 2004. (don't let your doctor tell you bad stories about HAI and that it doesn't work. That's only if you only have HAI and not like what I did, have chemo and HAI chemo.)
Here is a web site about the pump.
[url]http://wwwp.medtronic.com/Newsroom/LinkedItemDetails.do?itemId=110185363594 1&itemType=patient_profile&lang=en_US[/url]
I was supposed to start chemo in October, but I had different complications not related to the trial. I was allergic to a lot of drugs, so the Dr.'s all dubbed me the queen of side effects (for instance I recently became allergic to tooth paste). So, I started chemo in December and had it for six months.
I had Irinotecan every two weeks (However, there is another trial where you can use Oxilaplatin) and I had FUDR infused directly into my pump every other two weeks.
Once I started I had no side effects. I worked 50 hours a week to make up for the 2 days I took off every other week for chemo. I drove 8 hours one way for my appointments.
You can read about the study from Sloan Kettering here
"Researchers found that patients receiving HAI lived longer than those receiving systemic chemotherapy, with a median survival of 24 versus 20 months. In addition, patients receiving HAI had better response rates (47 percent versus 24 percent) and longer time to disease progression in the liver (9.8 months versus 7.3 months).
Patients receiving HAI did not experience the usual side effects associated with systemic therapy such as diarrhea, decreased white blood cell counts, and hair loss. However, because patients on the HAI regimen experienced mild toxicity to the liver, their liver function was monitored closely throughout the duration of treatment to prevent the toxicity from becoming more severe.
The research began in 1996, before chemotherapy drugs such as irinotecan and oxaliplatin were available, so both sets of patients received the standard drugs at the time, fluorouracil and leucovorin, and had access to the newer drugs as they became available.
According to Dr. Kemeny, studies are currently underway at MSKCC using HAI therapy in combination with newer drugs, and response rates appear to be even higher. Furthermore, the addition of HAI therapy is also being investigated in patients with primary liver cancer."
I read a more current article, but I forgot to bookmark it, that said with the new drugs, the study is going quite well, so far everyone on the study is alive.
Let me know how I can help.
Last edited by moderator2; 11-19-2007 at 08:34 AM.
that said with the new drugs, the study is going quite well, so far everyone on the study is alive. 
