More Chemo???

 Hello...

        I was just wondering if anyone has ever done more then the 6 months of standard of care chemo? My husband has had a permanent colostomy because the cancer was found in the spintcher muscle. He had raditation 32 treatments BEFORE surgery and 5FU chemo with the pump 24 hours a day 7 days a week. AFTER surgery. He had 10 more raditation treatments....2 times a day each about 5 minutes long and the Xeloda pill for 6 months PLUS the oxy every 21 days. He was a stage 3 with 1 postitive node.....the surgeon said he got it all.....YET they want more. I have read on here that many have NOT taken more chemo AFTER surgery....YET we were led to belive that more chemo IS standard of care??? Having more chemo IS our decision BUT I am worried that more IS NOT always good.....I also do NOT understand why they would even consider telling him to do two more months without even doing ANY test before hand. His last scans he had were all clean......ANY ideas or thoughts are welcomed.....I'M CONFUSED.

Hi Sheila,

I'm sure other good people, patients and caregivers, will add their advice here ... you should, at minimum, have been getting blood tests every few weeks to evaluate things like your husband's liver and kidney function.  With this, you should be getting regular CEA tests.  And if so, what was his CEA at?   ANd what was it BEFORE surgery, as you'll need this for a benchmark.  Normal CEA is below three (3.0).  Anything above three, there tends (not always) to be cancerous activity happening.  The pre-operative benchmark CEA reading helps to establish how metabolically active your husband's cancer was -- sometimes these readings are very high, but some nasty cancers don't register much on the CEA chart, and that's why taking a pre-operative benchmark CEA test is so darn important.  

For example, my husband's CEA is an enviable zero point 6 at the moment.  Sadly, however, we never knew about CEA readings and the doctors NEVER took this benchmark before he had his colon resection in March of this year, and now we're not sure if this is a good sign or if this normal for Al.  In short, we're unsure if the CEA readings are all that accurate for my husband, simply because he might have a cancer that doesn't really register on the CEA scale.  Ouch!  But he just had his second PET/CT scan and this came back NED (no evidence of disease).  

Next, you should also be getting a PET/CT scan.  Ask your doctor for one.  If your HMO or insurance refuses, go to your State medical watchdogs (in California, we have one such watchdog).  This is the most accurate and diffinative test for detecting cancer reccurrance, as any cancer that's metabolically active will light up like a Christmas tree light and thus provide your oncologist with valuable data to determine if your husband is on the right course of chemo or if the doctors need to adjust or change the chemo protocol.  Of course, if there is anything "lit up" on the PET/CT scan, you'll also know if there is anything amiss that might require more surgery or radiation before that tumor gets too large.  

My biggest concern with the US healthcare system is that it's not for profit.  It's not government run (goverments like to get reelected) like in Canada.  As such, because they are private company's running the healthcare, they don't like people to spend money.  So, it's been my experience with my husbands HMO, that I really have to ASK for tests to be done (this doesn't happening in Canada).  As such, this takes a lot of self-education and asking a lot of questions.  Google terms like CEA and perhaps make Wikipedia your friend.  These are great educational tools available online that can help you to educate yourself to become a more vocal and targeted advocate for your husband.  For sure, if I had not done this for my husband --  been a vocal advocate -- I'm positive he would have been treated as "terminal Stage IV" and overlooked.  I've seen this happen down here in the good old US of A.  Your husband is Stage III and doesn't want to be Stage IV and this could well mean more chemo is warranted.  So, check his CEA, his blood tests -- ask the doctors what the levels are and how his liver and kidneys, etc. are doing and if they can handle more chemo.  And then demand a PET/CT scan.  

Hopefully this helps!  

Paula Jean 

If clear margins were achieved during surgery, then I believe that chemo is ordered post surgery in order to kill any cancer that may be "floating round after surgery".  Scans would normally be done after the post surgery chemo round is completed- perhaps 3 months post surgery.

Perhaps you may want to seek a second opinion?

I agree with karenb I always recommend a second opinion at a major cancer hospital, which you can find here

http://www.usnews.com/directories/hospitals/index_html/specialty+IHQCANC/

I was originally giver 6 to 9 months to live, but told that I could die at any minute.  I went to another state with a major cancer hospital and it made all the difference in the world.  That was in 2004 and I have been cancer free since then.