Met With The Onco - Have ??? For Those Who Have Been Through It

Summary of previous:  My husband, Brian, had surgery and was diagnosed with stage 3-4 cancer of the terminal ileum in Aug.06.  Removal and resection.  Began chemo treatment (Folfox, oxyplaten, 5fu) in Oct 06 for colon cancer (his was so rare, and so close to the colon, that was the determination), trying to get anything microscopic left.  Discharged from chemo Mar 07.  Bloodwork monthly and CT/PET scans every 3.  Port removed Feb 08. Continued bloodwork and CT/PET.

Mar 08, CT showed suspicious activity at site of surgery.  CEA levels not remarkable.  Follow up PET revealed same.  Surgery set for May 08.  Surgery found golf ball sized recurrence touching/laying on the ileac artery.  Cannot be removed.

Yesterday we finally met with the oncologist.  This is considered a local recurrence.  Treatment will be two phases. 

Phase 1 is radiation and chemo, daily.  Not yet sure whether it will be oral or IV.  Doc wants to study it some more and see what he determines the best course.

Phase 2 is chemo only, to combat any microscopic remains.  (Yeah, right!  That is why he had chemo in the first place and here we are!)

Arnold, if you are out there, I printed your messages and had them in my hand to show the oncologist.  He said everything you mentioned, including the same drugs.  I felt confident that he had done his research, because I had your info with me.  Thank you for sharing your story.

He mentioned side effects of the xeloda included redness and itching of the palms, some skin peeling, etc.  Did anyone experience these?  What other side effects did you experience?  It sounded like Brian could walk away from the radiation and go straight to work?  Does radiation have minimal effects?  There is a part of the small intestines which will probably be a part of the radiation, they cannot be separated during the treatment.  How will this effect them?

Thanks to everyone who shares regularly on this site.  I have found it to be a great resource and comfort.  I will try ot share as much with you as you have shared with us.

LeeAnne

Hi Leanne:  This is Arnold again.  I had no side effects from the radiatio (35 days straight)  They gave me Xeldoa along Radiation.  The only side effects from the Xeloda was tirerdness (not Serious).  Also have him cover up if he goes out in the sun.  I sat in the  sun for 1/2 hour and my head peeled like a grape!  Good Luck

 

On 6/11/2008 Arnold wrote:

Hi Leanne:  This is Arnold again.  I had no side effects from the radiatio (35 days straight)  They gave me Xeldoa along Radiation.  The only side effects from the Xeloda was tirerdness (not Serious).  Also have him cover up if he goes out in the sun.  I sat in the  sun for 1/2 hour and my head peeled like a grape!  Good Luck

I just finished Xeloda 3 weeks ago.  The worst thing, like Arnold, was tiredness - anemia.  I did not experience the hand/foot syndrome.  I took 200 mg B6 daily per the dr. as apparently there is some study showing it helps avoid that.

 

On 6/11/2008 Sickofitall wrote:

Summary of previous:  My husband, Brian, had surgery and was diagnosed with stage 3-4 cancer of the terminal ileum in Aug.06.  Removal and resection.  Began chemo treatment (Folfox, oxyplaten, 5fu) in Oct 06 for colon cancer (his was so rare, and so close to the colon, that was the determination), trying to get anything microscopic left.  Discharged from chemo Mar 07.  Bloodwork monthly and CT/PET scans every 3.  Port removed Feb 08. Continued bloodwork and CT/PET.

Mar 08, CT showed suspicious activity at site of surgery.  CEA levels not remarkable.  Follow up PET revealed same.  Surgery set for May 08.  Surgery found golf ball sized recurrence touching/laying on the ileac artery.  Cannot be removed.

Yesterday we finally met with the oncologist.  This is considered a local recurrence.  Treatment will be two phases. 

Phase 1 is radiation and chemo, daily.  Not yet sure whether it will be oral or IV.  Doc wants to study it some more and see what he determines the best course.

Phase 2 is chemo only, to combat any microscopic remains.  (Yeah, right!  That is why he had chemo in the first place and here we are!)

Arnold, if you are out there, I printed your messages and had them in my hand to show the oncologist.  He said everything you mentioned, including the same drugs.  I felt confident that he had done his research, because I had your info with me.  Thank you for sharing your story.

He mentioned side effects of the xeloda included redness and itching of the palms, some skin peeling, etc.  Did anyone experience these?  What other side effects did you experience?  It sounded like Brian could walk away from the radiation and go straight to work?  Does radiation have minimal effects?  There is a part of the small intestines which will probably be a part of the radiation, they cannot be separated during the treatment.  How will this effect them?

Thanks to everyone who shares regularly on this site.  I have found it to be a great resource and comfort.  I will try ot share as much with you as you have shared with us.

LeeAnne

Leeanne, How is your husband now? My sister was diagnosed with stage four colorectal cancer and is mentally scared to death. she is going through treatments and has been for a year now. I am wondering since their is no cure for this stage, the meds they are giving her is just to extend her life some. Is this true?

 

On 6/11/2008 Sickofitall wrote:

Summary of previous:  My husband, Brian, had surgery and was diagnosed with stage 3-4 cancer of the terminal ileum in Aug.06.  Removal and resection.  Began chemo treatment (Folfox, oxyplaten, 5fu) in Oct 06 for colon cancer (his was so rare, and so close to the colon, that was the determination), trying to get anything microscopic left.  Discharged from chemo Mar 07.  Bloodwork monthly and CT/PET scans every 3.  Port removed Feb 08. Continued bloodwork and CT/PET.

Mar 08, CT showed suspicious activity at site of surgery.  CEA levels not remarkable.  Follow up PET revealed same.  Surgery set for May 08.  Surgery found golf ball sized recurrence touching/laying on the ileac artery.  Cannot be removed.

Yesterday we finally met with the oncologist.  This is considered a local recurrence.  Treatment will be two phases. 

Phase 1 is radiation and chemo, daily.  Not yet sure whether it will be oral or IV.  Doc wants to study it some more and see what he determines the best course.

Phase 2 is chemo only, to combat any microscopic remains.  (Yeah, right!  That is why he had chemo in the first place and here we are!)

Arnold, if you are out there, I printed your messages and had them in my hand to show the oncologist.  He said everything you mentioned, including the same drugs.  I felt confident that he had done his research, because I had your info with me.  Thank you for sharing your story.

He mentioned side effects of the xeloda included redness and itching of the palms, some skin peeling, etc.  Did anyone experience these?  What other side effects did you experience?  It sounded like Brian could walk away from the radiation and go straight to work?  Does radiation have minimal effects?  There is a part of the small intestines which will probably be a part of the radiation, they cannot be separated during the treatment.  How will this effect them?

Thanks to everyone who shares regularly on this site.  I have found it to be a great resource and comfort.  I will try ot share as much with you as you have shared with us.

LeeAnne

hi leeanne.  i didnt read arnolds message but thought id address yours.  i was diagnosed with colon cancer on april 1, 07 and had surgery ending in an illeostomy on may 1, 07.  not a big surprise as polyps run in the family.  im the only one to end up with cancer in the current generation though.  the surgery didnt end exactly as planned though and life hasnt been the same since.  to address your message though; i didnt seem to have much problem with  the xeloda or radiation other than skin peeling and cost.  ive been done with chemo and oxiliplatin since dec 21 and side effects are continuing to show and worsen.  mine main problem is the pain and numbness in hands and feet.  imtired at least once a week, depressed, my eyes are blurring, my ears are clogging my joints hurt where thry never have before and for no reason.  eveyone, including me thought id just start coing back a short while after finished with chemo; hasnt been the case though.  oh, and i itch ike i have fleas.  guess i better get my dog some.  didnt mean to cheer you up, but there are more like us out there, good luck, michael.

Michael - are you continuing to use Vit B-6?  It could help with the itching some and possibly hasten the return of taste, etc.  I would also recommend that you talk to the Docs and get some feedback, if you haven't.  If you haven't I certainly understand that!!!  I want to get away from all of this ASAP after 3 years of fighting this.  The docs have told me that I am a survivor.  I hope so but I remain constantly vigilant.  Scans and CEA tests will continue as long as I feel I need them.  Maybe forever, but that is OK!

Sorry Mike - one more comment.  Are you exercising?  Can you exercise?  I'm 71 and I go to the gym 5,  6  times a week and  Ido 12 to 15 miles on the stationary bike.  Might be good idea if you can.  I finished chemo 2 weeks ago (folfox, etc) after 5 months.  My taste is starting to come back and I have no other side effects.

Marilyn,

I took Xeloda summer 2006 and had to stop after 3 courses. No side effects other than the hand/foot syndrome. It was slight at f/u of 2 course but worsened dramatically by the end of the 3rd course. It was considered 3rd degree burn (my hands/feet weren't red, but were mahogany colored.) I stopped just short of being incapacitated. It hurt to turn the shower on, shift my car into drive, impossible to open a bottle or jar, couldn't hold a pen to write. My feet felt like I was standing on hot sand all the time. My hands peeled within a couple of weeks and I have had no recurring problems.  My feet still on occasion have a burning sensation, but nothing I can't live with. I had no other side effects and wish my doc had recommended vitamin b. My doc said that with each course it would get progressively worse - not gradually - but incrementally. Apparently they give a patient the largest dose of chemo that they can and then reduce if there are side effects. They say that is easier on the psyche than increasing the dose if there are no/slight side effects. Be sure to ask your husband's doc at what point do you need to call so that dosage can be reduced. I waited until the next f/u and it was to late to minimize the effect, so I stopped treatment completely. I hope this helps. I am praying for both of you.

  

Thanks, Arnold.  Did you take the vit b-6 during your treatment?  Apparently that is what helped.  Also, do you know what dose you were being given?  When I talked to the oncologist, he didn't want to say, yet, whether it would be oral xeloda or IV something else.  We set up the port insertion for July 3 and are talking to the radiation oncologist on Monday the 16th of June.  I want to make sure to ask the right questions.

LeeAnne

Tammy58,

Thanks, I didn't know about the B6.  I now know to ask about that.  What did you do to combat the anemia?  And was that from the rad or the chem? or the combo?

LeeAnne