To Changing2
I was wondering if you would mind sharing the state of your disease with me. You mentioned you were on the same treatment as my dad. My dad has not been completely free on cancer since Summer 2006. He is not a candidate for any surgical or radiation procedure at this time. So, he is just on treatment. Any info would be helpful.
Comments
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Oops!
I didn't notice your message until now! Just got back from a visit to GA. on Sunday! WOW, I too started in the summer of 2006! Her is my recollection:
1. July 06: colonoscopy, CEA 4.8
2. August 06: Hemicolectomy, CEA after surgery 4.7! STAGE 3C (onc thought it should of been stage 4) 17 out of 21 nodes with cancer. One node left in was thought to be an infection and surgeon wouldn't operate!Latter it becomes an issue.
3. Sept 06 through Feb 07: Folfox did 12 treatments.CEA 1.7 from Dec till Feb.
4. June 07: That 1 small rectal node is only problem on CAT/PET. CEA 2.
5. Sept 07: CEA 10! Liver mets and that rectal node stronger. MD says lets go with 5 chemo tx's then surgery.
6. Oct to Dec 07:Fulfori with Avastin. Stopped after 4 treatments and 25lb weight lose.
7. Feb to April 08: MD's change their mind and order Radiation with 5FU for nearly 8 weeks for rectal node before looking into liver surgery. When radiation finished CEA was 18! MD states need chemo. Waited 3 weeks before staring next txmt and CEA rose to 31! Failed K-ras test,so new drugs won't work.
8. May 08 till Nov 08: Fulfori and Avastin. (June Avastin stopped and admitted to hospital with clots to lung). When Avastin stopped I had already recieved about 3 treatments and CEA was 18. It remained at 18 til Sept when it stated to climb slowly while taking Fulfuri to 29! MD allowed me to take a vacation as this too was failing. I took a few weeks off and CEA went up to 59.8 by end of November!MD states she wants to try Avastin again but I need to stay on coumadin for 6 months and that won't end the end of December. For now she started me back Xeloda and Oxialiplatin. Both drugs failed in the past but I had 5 FU not the pills (Xeloda) therefore she's hoping to "tick" my system into thinking this is a new drug:/
9. Presently: Did one week of Xeloda and Oxi. I'm seriously thinking of stoppong everything soon. Nothing really ever works beyond a month or two,so I don't believe Avastin is the answer. MD says although there are risks for Avastin and blood clots again... not taking it means death within 6 months. At first I thought why not...if I throw a fatal clot...well no suffering there but now I'm thinking...what if the clot leaves me paralyzed with a stroke ....I'm a VERY high risk!Therefore, I'm going to stop tx's soon and enjoy whatever time I have left!!!
Hope not too many people read this....I don't usually share this much but seeing you asked. I pray you and your Dad make the best possible decisions. I REALLY know where I'm going after this life, so I don't dread death. What I do dread is leaving my wife alone:( However we share the same faith and know that God will carry her through. Sorry this sounds depressing but I'm sure your having been through 2 years of treatments ... you've struggled to find your way as well. I'm sooo praying for you and your Dad. Take care and write whenever!0 -
I think you did a great job of sharing your path..changing2 said:Oops!
I didn't notice your message until now! Just got back from a visit to GA. on Sunday! WOW, I too started in the summer of 2006! Her is my recollection:
1. July 06: colonoscopy, CEA 4.8
2. August 06: Hemicolectomy, CEA after surgery 4.7! STAGE 3C (onc thought it should of been stage 4) 17 out of 21 nodes with cancer. One node left in was thought to be an infection and surgeon wouldn't operate!Latter it becomes an issue.
3. Sept 06 through Feb 07: Folfox did 12 treatments.CEA 1.7 from Dec till Feb.
4. June 07: That 1 small rectal node is only problem on CAT/PET. CEA 2.
5. Sept 07: CEA 10! Liver mets and that rectal node stronger. MD says lets go with 5 chemo tx's then surgery.
6. Oct to Dec 07:Fulfori with Avastin. Stopped after 4 treatments and 25lb weight lose.
7. Feb to April 08: MD's change their mind and order Radiation with 5FU for nearly 8 weeks for rectal node before looking into liver surgery. When radiation finished CEA was 18! MD states need chemo. Waited 3 weeks before staring next txmt and CEA rose to 31! Failed K-ras test,so new drugs won't work.
8. May 08 till Nov 08: Fulfori and Avastin. (June Avastin stopped and admitted to hospital with clots to lung). When Avastin stopped I had already recieved about 3 treatments and CEA was 18. It remained at 18 til Sept when it stated to climb slowly while taking Fulfuri to 29! MD allowed me to take a vacation as this too was failing. I took a few weeks off and CEA went up to 59.8 by end of November!MD states she wants to try Avastin again but I need to stay on coumadin for 6 months and that won't end the end of December. For now she started me back Xeloda and Oxialiplatin. Both drugs failed in the past but I had 5 FU not the pills (Xeloda) therefore she's hoping to "tick" my system into thinking this is a new drug:/
9. Presently: Did one week of Xeloda and Oxi. I'm seriously thinking of stoppong everything soon. Nothing really ever works beyond a month or two,so I don't believe Avastin is the answer. MD says although there are risks for Avastin and blood clots again... not taking it means death within 6 months. At first I thought why not...if I throw a fatal clot...well no suffering there but now I'm thinking...what if the clot leaves me paralyzed with a stroke ....I'm a VERY high risk!Therefore, I'm going to stop tx's soon and enjoy whatever time I have left!!!
Hope not too many people read this....I don't usually share this much but seeing you asked. I pray you and your Dad make the best possible decisions. I REALLY know where I'm going after this life, so I don't dread death. What I do dread is leaving my wife alone:( However we share the same faith and know that God will carry her through. Sorry this sounds depressing but I'm sure your having been through 2 years of treatments ... you've struggled to find your way as well. I'm sooo praying for you and your Dad. Take care and write whenever!
I don't know what else to say. I will keep you in my prayers. If I find myself in your position, I hope I am as wise as you.
Pam0 -
Thanks so much for sharing!!changing2 said:Oops!
I didn't notice your message until now! Just got back from a visit to GA. on Sunday! WOW, I too started in the summer of 2006! Her is my recollection:
1. July 06: colonoscopy, CEA 4.8
2. August 06: Hemicolectomy, CEA after surgery 4.7! STAGE 3C (onc thought it should of been stage 4) 17 out of 21 nodes with cancer. One node left in was thought to be an infection and surgeon wouldn't operate!Latter it becomes an issue.
3. Sept 06 through Feb 07: Folfox did 12 treatments.CEA 1.7 from Dec till Feb.
4. June 07: That 1 small rectal node is only problem on CAT/PET. CEA 2.
5. Sept 07: CEA 10! Liver mets and that rectal node stronger. MD says lets go with 5 chemo tx's then surgery.
6. Oct to Dec 07:Fulfori with Avastin. Stopped after 4 treatments and 25lb weight lose.
7. Feb to April 08: MD's change their mind and order Radiation with 5FU for nearly 8 weeks for rectal node before looking into liver surgery. When radiation finished CEA was 18! MD states need chemo. Waited 3 weeks before staring next txmt and CEA rose to 31! Failed K-ras test,so new drugs won't work.
8. May 08 till Nov 08: Fulfori and Avastin. (June Avastin stopped and admitted to hospital with clots to lung). When Avastin stopped I had already recieved about 3 treatments and CEA was 18. It remained at 18 til Sept when it stated to climb slowly while taking Fulfuri to 29! MD allowed me to take a vacation as this too was failing. I took a few weeks off and CEA went up to 59.8 by end of November!MD states she wants to try Avastin again but I need to stay on coumadin for 6 months and that won't end the end of December. For now she started me back Xeloda and Oxialiplatin. Both drugs failed in the past but I had 5 FU not the pills (Xeloda) therefore she's hoping to "tick" my system into thinking this is a new drug:/
9. Presently: Did one week of Xeloda and Oxi. I'm seriously thinking of stoppong everything soon. Nothing really ever works beyond a month or two,so I don't believe Avastin is the answer. MD says although there are risks for Avastin and blood clots again... not taking it means death within 6 months. At first I thought why not...if I throw a fatal clot...well no suffering there but now I'm thinking...what if the clot leaves me paralyzed with a stroke ....I'm a VERY high risk!Therefore, I'm going to stop tx's soon and enjoy whatever time I have left!!!
Hope not too many people read this....I don't usually share this much but seeing you asked. I pray you and your Dad make the best possible decisions. I REALLY know where I'm going after this life, so I don't dread death. What I do dread is leaving my wife alone:( However we share the same faith and know that God will carry her through. Sorry this sounds depressing but I'm sure your having been through 2 years of treatments ... you've struggled to find your way as well. I'm sooo praying for you and your Dad. Take care and write whenever!
Hello:
I truly appreciate you sharing your story with me. You sound very much like my dad at this point. I only hope that I could be that brave and wise if I was in your shoes. I know that your doctor has only offered you chemo options but is it possible to look into sir spheres for your liver. Sometimes, our oncologist was not pushing us to see a radiologist and we did it on our own and were able to get some procedures done that allowed us to get to today. It is just an idea. I am not sure from your post if that lymph node is still positive or not.
Jennifer0 -
I'm with you herechanging2 said:Oops!
I didn't notice your message until now! Just got back from a visit to GA. on Sunday! WOW, I too started in the summer of 2006! Her is my recollection:
1. July 06: colonoscopy, CEA 4.8
2. August 06: Hemicolectomy, CEA after surgery 4.7! STAGE 3C (onc thought it should of been stage 4) 17 out of 21 nodes with cancer. One node left in was thought to be an infection and surgeon wouldn't operate!Latter it becomes an issue.
3. Sept 06 through Feb 07: Folfox did 12 treatments.CEA 1.7 from Dec till Feb.
4. June 07: That 1 small rectal node is only problem on CAT/PET. CEA 2.
5. Sept 07: CEA 10! Liver mets and that rectal node stronger. MD says lets go with 5 chemo tx's then surgery.
6. Oct to Dec 07:Fulfori with Avastin. Stopped after 4 treatments and 25lb weight lose.
7. Feb to April 08: MD's change their mind and order Radiation with 5FU for nearly 8 weeks for rectal node before looking into liver surgery. When radiation finished CEA was 18! MD states need chemo. Waited 3 weeks before staring next txmt and CEA rose to 31! Failed K-ras test,so new drugs won't work.
8. May 08 till Nov 08: Fulfori and Avastin. (June Avastin stopped and admitted to hospital with clots to lung). When Avastin stopped I had already recieved about 3 treatments and CEA was 18. It remained at 18 til Sept when it stated to climb slowly while taking Fulfuri to 29! MD allowed me to take a vacation as this too was failing. I took a few weeks off and CEA went up to 59.8 by end of November!MD states she wants to try Avastin again but I need to stay on coumadin for 6 months and that won't end the end of December. For now she started me back Xeloda and Oxialiplatin. Both drugs failed in the past but I had 5 FU not the pills (Xeloda) therefore she's hoping to "tick" my system into thinking this is a new drug:/
9. Presently: Did one week of Xeloda and Oxi. I'm seriously thinking of stoppong everything soon. Nothing really ever works beyond a month or two,so I don't believe Avastin is the answer. MD says although there are risks for Avastin and blood clots again... not taking it means death within 6 months. At first I thought why not...if I throw a fatal clot...well no suffering there but now I'm thinking...what if the clot leaves me paralyzed with a stroke ....I'm a VERY high risk!Therefore, I'm going to stop tx's soon and enjoy whatever time I have left!!!
Hope not too many people read this....I don't usually share this much but seeing you asked. I pray you and your Dad make the best possible decisions. I REALLY know where I'm going after this life, so I don't dread death. What I do dread is leaving my wife alone:( However we share the same faith and know that God will carry her through. Sorry this sounds depressing but I'm sure your having been through 2 years of treatments ... you've struggled to find your way as well. I'm sooo praying for you and your Dad. Take care and write whenever!
Depressing for some or not, this will unfortunately be a reality for many of us at some time in the future and it is awesome to see you strong in your faith and able to make the tough decisions. And I am with you on the whole throwing a clot to make it blessedly quick! Sounds morbid, but if I HAVE to go from cancer, I'd rather it be a complication of treatment that takes me swiftly. Of course, I am hoping God prefers I go in my 90s or beyond while doing something terribly exciting and life affirming! Either way, I am here for the fight and will give it my all! God bless you and your wife and I pray your doctors are able to find a treatment that will work for ALL involved, including you! If it is indeed your time, then you have the grace to take that decision; but if it isn't, have the strength to continue the fight and complete the mission God has for you.
mary0 -
That pesty node hasn't shownjcavanaugh said:Thanks so much for sharing!!
Hello:
I truly appreciate you sharing your story with me. You sound very much like my dad at this point. I only hope that I could be that brave and wise if I was in your shoes. I know that your doctor has only offered you chemo options but is it possible to look into sir spheres for your liver. Sometimes, our oncologist was not pushing us to see a radiologist and we did it on our own and were able to get some procedures done that allowed us to get to today. It is just an idea. I am not sure from your post if that lymph node is still positive or not.
Jennifer
That pesty node hasn't shown up on last scan but CEA rose to 63 before I started on the OXI and Xeloda 2 weeks ago.Update now is that while I was taking the second round of Oxi on Monday I develpoed a severe reaction during the infusion and had to stop Oxi all together. As I said I was on Oxi before but MD says reactions like this happen sometimes when you try to go back to an old drug. She wants me to continue with Xeloda and she's trying to get insurance to cover Erbitux. Seems there was a clitch with my K-ras test and it was actually done 2 times. One result was negative and the other positive, so MD wants to try. Weird...all I can think is that the test was done on 2 different areas of the tumor.... which probably means it still won't work...but I'm actually thinking of going for it:/ See how I feel in 2 weeks! Hope things are better for your Dad. Keep me posted!0 -
The Mission!msccolon said:I'm with you here
Depressing for some or not, this will unfortunately be a reality for many of us at some time in the future and it is awesome to see you strong in your faith and able to make the tough decisions. And I am with you on the whole throwing a clot to make it blessedly quick! Sounds morbid, but if I HAVE to go from cancer, I'd rather it be a complication of treatment that takes me swiftly. Of course, I am hoping God prefers I go in my 90s or beyond while doing something terribly exciting and life affirming! Either way, I am here for the fight and will give it my all! God bless you and your wife and I pray your doctors are able to find a treatment that will work for ALL involved, including you! If it is indeed your time, then you have the grace to take that decision; but if it isn't, have the strength to continue the fight and complete the mission God has for you.
mary
Yea, I pray I fulfill my mission and hear "well done" someday:)0 -
Hi,changing2 said:That pesty node hasn't shown
That pesty node hasn't shown up on last scan but CEA rose to 63 before I started on the OXI and Xeloda 2 weeks ago.Update now is that while I was taking the second round of Oxi on Monday I develpoed a severe reaction during the infusion and had to stop Oxi all together. As I said I was on Oxi before but MD says reactions like this happen sometimes when you try to go back to an old drug. She wants me to continue with Xeloda and she's trying to get insurance to cover Erbitux. Seems there was a clitch with my K-ras test and it was actually done 2 times. One result was negative and the other positive, so MD wants to try. Weird...all I can think is that the test was done on 2 different areas of the tumor.... which probably means it still won't work...but I'm actually thinking of going for it:/ See how I feel in 2 weeks! Hope things are better for your Dad. Keep me posted!
My dad had the same problem with OXI. He tried twice to receive it this past year and had a very bad reaction both times. He had OXI before back in 2004-2005. He is on xeolda and avastin. I am hoping that the doctor tries a new combo like folfiri + avastin or something. My dad has been the most successful when he was on erbitrux and vextibux. His tumors seem to respond to those drugs. I wish that we could just keep alternating back and forth to keep it in check while we wait for some new drugs to come along.
Jennifer0 -
Treatmentsjcavanaugh said:Hi,
My dad had the same problem with OXI. He tried twice to receive it this past year and had a very bad reaction both times. He had OXI before back in 2004-2005. He is on xeolda and avastin. I am hoping that the doctor tries a new combo like folfiri + avastin or something. My dad has been the most successful when he was on erbitrux and vextibux. His tumors seem to respond to those drugs. I wish that we could just keep alternating back and forth to keep it in check while we wait for some new drugs to come along.
Jennifer
So sorry you guys are struggling with all the treatments.I started Vectibix today. It doesn't hold much promise for me but MD says it's this or nothing for now. Can I ask why did you stop Vectibix or Erbitux if it was working?0 -
My dad was on erbitrux after a colon resection in 2005. He stopped in the summer of 2006 because his pet scan was clean. Then, it came back in the fall of 2006 and he went on avastin and maybe something else (not sure). In June 2007, he switched oncologists and treatments. He went on vextibux. It worked great. His cea went from almost 200 to around 13 but no change on ct scan done in October 2007 so the doctor switched to erbitrux. It only helped to maintain, not real change - some growth and one or two new tumors. He seemed to respond well to vextibux. We do not know why onc. did not keep him on it longer. We were a possible candidate for sir spheres to liver and a similar procedure to lungs at georgetown but the last ct done in summer 2008 showed some uptake near esophagus. Until that is gone, he is not a candiate for those procedures. Are you a candidate? If that node does not lite up, I would think that you would be. My parents live in Williamsburg, VA. I live in northern VA. If possible, it is worth going to a major cancer center like Hopkins, Georgetown or whatever is near you to look into sir spheres - this can work with chemo. I would give anything for us to get this procedure. Hopefully some new drugs around the corner.changing2 said:Treatments
So sorry you guys are struggling with all the treatments.I started Vectibix today. It doesn't hold much promise for me but MD says it's this or nothing for now. Can I ask why did you stop Vectibix or Erbitux if it was working?
Jennifer0 -
Hijcavanaugh said:My dad was on erbitrux after a colon resection in 2005. He stopped in the summer of 2006 because his pet scan was clean. Then, it came back in the fall of 2006 and he went on avastin and maybe something else (not sure). In June 2007, he switched oncologists and treatments. He went on vextibux. It worked great. His cea went from almost 200 to around 13 but no change on ct scan done in October 2007 so the doctor switched to erbitrux. It only helped to maintain, not real change - some growth and one or two new tumors. He seemed to respond well to vextibux. We do not know why onc. did not keep him on it longer. We were a possible candidate for sir spheres to liver and a similar procedure to lungs at georgetown but the last ct done in summer 2008 showed some uptake near esophagus. Until that is gone, he is not a candiate for those procedures. Are you a candidate? If that node does not lite up, I would think that you would be. My parents live in Williamsburg, VA. I live in northern VA. If possible, it is worth going to a major cancer center like Hopkins, Georgetown or whatever is near you to look into sir spheres - this can work with chemo. I would give anything for us to get this procedure. Hopefully some new drugs around the corner.
Jennifer
Hope things are going better for you and that the new year finds you and your Dad at peace. To answer your questions yes, I used to go to Fox Chase Cancer Center,Pa but the 2 hour travel became too much on me. I was thinking of doing spheres but the first group of tumors in my liver are now "hypodense areas" after recieving chemo with radiation. They don't light up anymore but I now have 2 more spots in a different spots of the liver. I thought. wow, what if I had done those first areas and then the other areas light up:( Also concerned with 2 nodes in the lungs (not seen as cancer yet and not growing) but think the rectal node may be a problem soon as I'm beginning to have some bowel issues again:(
Therefore I'm trying the Vectibix now. MD says either Vectibix or nothing now! I have great faith that God is in control and He'll stay nearby as I trust Him to see me through this journey but can't say it's easy.Praying for you as well. Please stay in touch and tell your Dad I'm thinking of him and sent my best.0
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