One patient with glioblastoma still alive nine years later
by Julie50 on Tue Dec 22, 2009 09:07 PM
I'm new to this messge board. Am interested in anyone with rectal cancer that has metastsized. I was diagnosed in Feb 2007. Surgery removed tumor. Then had 6 weeks radiation and chemo. Then more chemo. I was clear from about Sept. 2007 til May 2008 when spot on liver was detected. I had liver resection Dec. 08. Again, clear of cancer. In Aug. of 2009 CEA started climbing, CAT scan revealed spot on liver and lung. Chemo suggested but would only lengthen life span by a couple of months. Otherwise 6 mos. to 12 months life expectancy. After much thought I decided to have the chemo. Ironitecan. However. after 2 doses am thinking about stopping the chemo altogether. I have had very serious diarrhea this time. Any comments would be appreciated.
by davidbeaham on Sun Dec 27, 2009 04:06 PM
Hi Julie, I was diagnosed Stage III CRC in 3/2006 and Stage IV CRC of the Liver 11/2008. I had a liver resection followed by 6 months of chemo. My oncologist suggested CPT- 11 along with leucovorin, Avastin and 5FU for dessert. The side effects were bad but with some dietary adjustments it was tolerable. I found cinnamon gum to help with metal mouth and PREVENTION mouth rinse stopped the mouth sores. Ask your doctor about the drugs he's using and about what I was given.
by cecgrove on Sun Dec 27, 2009 10:11 PM
I am sorry to hear about your diagnosis. My husband was diagnosed the same at the same time. He has gone through all kinds of treatments and but was either responding in a life-threatening way or not responsive at all. There were however a lot of different protocols that might help you, if irinotecan does not work. Xeloda (5FUs) normally is the recommended protocol, combined with the biological ones like Avastin seems to produce some good results for some people. I think I've come across the treatment protocols and paths in American Cancer Society. Don't give up at this point because you have only tried one, and don't let the technical statistics frighten you. The only caution I would say is do not rely completely on traditional treatment, use alternative and diet to strengthen your immune system as well. My husband refuses to listen and participates in support group. He suffers a lot from the side effects and becomes very depressed. I wish you good luck.
by Norfolk_girl on Mon Mar 15, 2010 10:02 PM
Could you have another resection for the new liver and lung tumor? My husband was diagnosed in April of 09 with stage IV. He has had six rounds of Folfox, a portal vein embolization to grow up the 'remnant' liver, disease progression in the liver, four more rounds of Folfox, and a liver surgery to remove the three tumors from the left lobe. He will have surgery to remove the entire right side of his liver in three weeks, assuming things are ok to proceed.
Just seems like if there is a spot on the liver and lung, they could perhaps remove those? Or perhaps ablation?
by livingbyfaith on Wed Mar 17, 2010 03:40 AM
Research Avemar, it is good with or without chemo, also check into other natural things such as Essiac tea, flax oil and cottage cheese. Good book Cancer and the Lords Prayer, also Knockout.
by nolalady on Fri Mar 19, 2010 03:37 AM
Reading your history was like reading my own. I have had almost exactly same problems as you. My doctor put me on ironitecan and Erbitux early this year. I had 4 weeks of diarrhea, severe rash on face as well as loss of all hair on my head, which had never happend thru other treatments. I have just stopped chemo. I have made plans to enjoy my summer. Doctor said okay. I keep asking why would I go thru all of this to add 2 months. I would rather have 12 good months. My original diagnosis was in July, 2007, chemo with 5Fu andradiation, then surgery. Told all of tumor gone, as well as 2 spots on liver. In 10/08 had liver resection as spots returned, then Avastin, which I culd not tolerate as i was going into renal failure. Had good months from March, 2009 to January, 2010. Now Erbitux and Ironitecan for only one treatment as reactions were so bad. Unless something else comes along, I am finished.
by mimi3535 on Fri Mar 19, 2010 03:56 AM
god bless you, you will be in my prayers.
by newperson on Sat Mar 20, 2010 07:43 PM
My husband has the same story. He was dx. in Dec. 2006 with rectal cancer. He had chemo/radiation, surgery, chemo(folfox). But in Sept. 2008 his cancer came back. 6 months chemo(forfolri) cleared them out. But his CEA started climbing up right away from 2.8 to 10 within 5 months and PET scan confirmed that the cancer came back again to several places last Aug. So he started the same chemo(forfolri) last Sept. The first three chemo cycles dropped the CEA to 7.8 and PET scan showed some responses except one place at his neck with a little growth. We were hoping the chemo continue working, but after that, his CEA took turn to climb up every cycle instead. Yesterday we got the result of CEA 15.3 and PET scan showing the place at his neck has more growth. The doctor still thinks the chemo is working and wanted my husband to continue on this chemo. He said it would be worse without the chemo. We kind of don't think the chemo is working for him. At this point, what should we do? Should we stay on this chemo, or change the chemo regiman, or do something else? My husband wants to quit the chemo. but I'm scared of that. I'm thinking of changing chemo regiman but wondering what if this chemo is still working, it's better not to use all of the available chemo so soon. He has used folfox, forfolri. I really like to know how you are doing right now, Julie, Dave, cecgrove's husband, Norfolk girl's husband and nolalady? You all are in my prayers. I pray for God's help and healing.
by newperson on Mon Mar 22, 2010 05:42 PM
How are you doing so far, Julie, Dave, cecgrove's husband, Norfolk girl's husband and nolalady? Could you give some updates please? I appreciate it a lot.
Also, anyone with any successful expericene in dealing with colorectal cancer recurrence, please give some advice. Thanks a lot.
by Unknown_Member on Wed Mar 24, 2010 01:03 PM
I've never posted before so this is new to me. This is what's going on with us right now. I hope it helps someone and me too.
Jimmy "my husband" was diagnosed with Cancer in December of 1999. It all started with a very rare form of skin cancer called extra mammary pagets disease "perianal". This caused a tumor in the rectum. Since then it has spread to the lymph nodes then spread on to lungs."Mestatic Rectal Cancer" He has had three surgeries. All done in Birmingham, Al. at UAB. The first in 2000. This resulted in a permanent colostomy and an apligraft. In 2002 he had the second surgery because they missed getting all of the EMPD. In 2005 it had spread to his lymph nodes in the left groin. This surgery left him with lymphodema in his leg as they had to remove all the lymph nodes and the vein that carries the fluid up the leg. He also has a huge scar on his thigh because they had to do a flap over the surgery site so he could have radiation. Another scar where they harvested skin from his thigh for a skin graft. He also had chemo with a groshon catherer and pump. In October of 2009 a CT scan showed spots on his lungs, a biopsy was done in January and now the cancer is in his lungs. They can't do surgery this time or radiation. They had to implant an infusion pump in his chest in order to give the chemo. He has to be admitted to the hospital every two weeks for two nights to recieve chemo. He will have to do this the rest of his life. His chemo treatments are Avastin, it takes an hour to drip, then he has Oxaliplatin and Leucovorin given together which takes over two hours, then he has 5-FU, this drug is given in two one liter bags that takes sixteen hours each to drip. So far the side effects have been weakness and nausea. The Oxaliplatin makes him very sensitive to cold, all his drinks and food has to be room temperature and it is painful to touch cold items and breath cold air, this usually last for fourty eight hours after recieving the drug. I noticed the side effects seemed to be greater after the second round. He has to have his blood checked before each trip to the hospital, as long as his count is good he can take the treatment. After four rounds he will be given a CT scan to see if the tumors are shrinking. If not they will stop the chemo. We are grateful for the treatment and a hospital stay no longer is a pain, it's a blessing. Please pray for Jimmy. He is so brave and courageous but at times it does get the best of him. I try to always keep in mind that all things are possible through Christ who strengthens me.
He has finished his fourth round and the after the first of the month he will have another scan to see how it's working. They ran the last round a little faster this time. The diarrhea is starting to get worse with each round but still bearable.
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