PLEASE READ - Jeff's mom's post -

I have been on the computer for almost a year finding out everything I can about SRC, but every article is so depressing.  My doctor told me originally that he knew all about SRC and it is curable.  Now he says there is nothing else for me to try, since I was unable to take Oxaliplatin and my CEA is continually rising. I feel like I am really alone here, since there are no support groups nearby for people with SRC, and very few people have ever heard about it.  When my doctor told me I am now "terminal", I asked him what symptoms I would have that the cancer is progressing.  He said "we'll discuss that another time."  I just finished making funeral arrangements.  Now I'm not doing anything.  I really don't know what to do next.  Any suggestions or insight will be most helpful. 

Jeff's mom said:

Signet Ring Cell Cancer

I have been on the computer for almost a year finding out everything I can about SRC, but every article is so depressing.  My doctor told me originally that he knew all about SRC and it is curable.  Now he says there is nothing else for me to try, since I was unable to take Oxaliplatin and my CEA is continually rising. I feel like I am really alone here, since there are no support groups nearby for people with SRC, and very few people have ever heard about it.  When my doctor told me I am now "terminal", I asked him what symptoms I would have that the cancer is progressing.  He said "we'll discuss that another time."  I just finished making funeral arrangements.  Now I'm not doing anything.  I really don't know what to do next.  Any suggestions or insight will be most helpful. 

Find another Oncologist ASAP.  Sounds like you are not getting good advice or care if the comment is "We'll discuss that at another time."  You deserve answers and options.  I have CRC, so slightly different and I did not have the Oxaliplatin for all 12 of my chemo sessions.  It helps in efficacy from my understanding, but the other portions can still be effective.  Again, find a oncologist to talk to.  NIH has had some recent promising trials.  A recent breakthrough

http://www.wsj.com/articles/mystery-fungus-sparks-nih-crisis-imperiling-trials-patients-and-its-boss-1484753489

So do not give up. ( I am Stage IIIC, but only because the met to my lung was not biopsied/a bit too small to tell on initial diagnosis.  If it was IDed at the time, I would be Stage IVA. )  Also keep on living and do things that make you happy.  Of course there are going to be down moments, but try to shake them off quickly.  Attitude helps.

Others with SRC probably will come by

Find another doctor!  My first doctor made me feel like I should just go home and die, and now I have doctors who make me feel like I may actually beat this disease.

As stated above by others: There are several other medicines they can use to fight your cancer besides Oxaliplatin. 

I was diagnosed with Stage 4 colon cancer February 2016.  My first oncologist told me that my cancer was incurable and they could only give me chemotheapy to prolong my life. I had a tumor in my colon that had metastasized to my liver( 20 tumors) and lungs (12 tumors).   He said I had 6 to 18 months to live and told me that I should make funeral arrangements.  I told him I wanted to fight this disease and search for a cure.  His exact words were "that is like chasing ghosts."   

He transferred to another clinic a couple of weeks later, and I was lucky to get an oncologist at my clinic who wanted to help me search for the best treatments. He felt it was best for me to start chemotherapy to shrink the tumors.  I started on Oxaliplatin, 5FU, and Avastin and was referred to Axel Grothey at the Mayo Clinic in Rochester Minnesota.  Dr. Grothey and 3 other doctors told me that they would not operate to remove the tumors, and that radiation was not an option for me because it would kill too much good tissue.  Dr. Grothey said that I should continue on the chemo for 8 rounds and then go on maintainence chemo.  I have been on Xeloda and Avastin since July 2016. He said if those medicines stopped working they have many others they would try.  He listed out about 20 medications and said there are many more.

I have been lucky.  After ten months of chemo, the tumor in my colon has completely dissappeared, and so have many of the tumors in my liver and lungs.  I learned about the ablation therapies from others on this site and asked my doctor if I could have ablation on my tumors.  I wanted to know if there was anything else that could be done to kill off the remaining tumors and was referred to an interventional oncologist right here in my hometown.  He said that my disease is now "liver dominant" and believes he can rid my liver of tumors as he has for many others.   Yesterday I had a microwave ablation on the tumor in the left lobe of my liver - one ghost down!  Next month he is going to inject radioactive beads into the right lobe of my liver which will kill all the tumors in that lobe.  He said he will be working to rid my liver of cancer over the next 3 to 6 months and then he is going to perform ablation on the tumor in my left lung.  This guy is the ghostbuster of liver cancer! 

While I know that this disease may eventually be the cause my death - I am still here.  I have so much to live for and will try whatever it takes to find a cure or to survive for as long as possible. My doctors now tell me they believe I have many years of life ahead of me!   

Even if I died in my sleep tonight (and I don't think I will) living with hope for a cure makes me feel so good. You deserve a doctor who will help you find some hope.

I will be praying that you find a good doctor. 

Joan

Dear Jeff's Mom - When you say SRC, I believe you mean squamous rectal.  In 2005, I was diagnosed with squamous cell anal cancer with 3 cancerous lymph nodes - close to the sphincter - probably a bit lower in the intestine than yours.  I had the polyp removed, as that is what they thought it was - it turned out to be a cancerous tumour. My treatment was 1 wk of 5Fu + mitocmycin - started 7 wks of radiation to the pelvic area and then 5Fu + mito the final week.  I wonder if there are any members who might have this type on the Anal Cancer site.

I was cancer free for 11yrs, then past June, I had an ultrasound that showed multiple lesions in my liver - adenocarcinoma CRC with liver mets - told inoperable.  I had a colonoscopy in 2014 and was told I did not need another for 7-10 yrs-very upsetting to be diagnosed with this after having had such a recent colonoscopy.  I am having folfuri + avastin (chemo cocktail believe similar to folfox, which has oxiplatin instead of what I am having - irinotecan).  Please ask about other treatment options, and talk to another Oncologist.  I wish you well.  Do not give up, as Trubrit has said.  I also take a sleeping pill at night, because my mind goes crazy at night.  It is called temazepam, and I believe it also helps with some of the depression side effects of my diagnosis.  Let us know what options you can learn of.  Well wishes sent to you.

Bellen said:

Treatment options

Dear Jeff's Mom - When you say SRC, I believe you mean squamous rectal.  In 2005, I was diagnosed with squamous cell anal cancer with 3 cancerous lymph nodes - close to the sphincter - probably a bit lower in the intestine than yours.  I had the polyp removed, as that is what they thought it was - it turned out to be a cancerous tumour. My treatment was 1 wk of 5Fu + mitocmycin - started 7 wks of radiation to the pelvic area and then 5Fu + mito the final week.  I wonder if there are any members who might have this type on the Anal Cancer site.

I was cancer free for 11yrs, then past June, I had an ultrasound that showed multiple lesions in my liver - adenocarcinoma CRC with liver mets - told inoperable.  I had a colonoscopy in 2014 and was told I did not need another for 7-10 yrs-very upsetting to be diagnosed with this after having had such a recent colonoscopy.  I am having folfuri + avastin (chemo cocktail believe similar to folfox, which has oxiplatin instead of what I am having - irinotecan).  Please ask about other treatment options, and talk to another Oncologist.  I wish you well.  Do not give up, as Trubrit has said.  I also take a sleeping pill at night, because my mind goes crazy at night.  It is called temazepam, and I believe it also helps with some of the depression side effects of my diagnosis.  Let us know what options you can learn of.  Well wishes sent to you.

Bellen,

No.  She means exactly what she said.  SRC is signet ring cell.  It's a rarer form of cancer colon cancer tumor cell.  The characteristics of SRC are it's typically more aggressive.  But this doesn't mean there are no survivors of SRC.  I wish I remember some of the ones who are still alive after finding out they have SRC.  One thing is for sure, seeking out a doctor or a major cancer center with SRC experience is a must.

Bellen said:

SRC

Thank you zx10guy, as I misunderstood what SRC stood for.  Best of luck Jeff's Mom.

Thanks, Bellen.  I appreciate that you took the time to answer.  All cancer, no matter what kind, is a horrible thing to live with.  I wish you the best, too. Keep on posting and keep us informed.

LauraCF said:

Please enjoy your life.  Each

Please enjoy your life.  Each day is still important.  

My partner was diagnosed two years ago with a 3C rectal tumour  Post treatment and after being NED for 6 months, we were told he is actually stage IV as the cancer team missed a timy tumour in his sacrum.  Even though he is stage IV and waiting for what will surely be a horrible surgery with permanent consequences, we still find time to have fun and do at least some of the things we love.  I try to get out and walk on my own; he still take photos.  We're still living, even though there is a putative death sentence hanging over him.  

The other thing is that even though he is stage IV, his cancer team isn't just giving up on him. It does sounds as though you need a new doctor.  Here in BC we have the BC Cancer Agency, and they provide cancer patients with access to many different specialists. I know that in the US it's different, and you're more on your own when it comes to finding treatment.  Perhaps you can use this as a good opportunity to find yourself an awesome oncologist. 

I'm thrilled that you responded...I hope your partner continues to thrive.  This is a terrible thing to have hanging over our heads, but it helps (as weird as it may sound) to have others who are going through the same thing.  I do so hope that the people you have in BC give you the support you need.  Mine comes from people like you.

Hi and sorry you are here.

I will be 5 years NED (No Evidence of Disease) on Jan 31, 2017. 

I was Dx'ed stage 3b - signet cell colon cancer.  I had the colon surgery followed by 6 months of Oxi and 5FU.  Trust me I know how scary this can be.

Please find another Onc!

Not to hijack, but I am EST time.  In 3 hours 15 minutes BIG TIME TO CELEBRATE!!!

beaumontdave said:

I"m going to need another clue here

This about getting to NY/Sloan?

I will be 5 years NED (No Evidence of Disease) on Jan 31, 2017. 

I was responding to that post, I was 3 hours 15 minutes left in January 30.  Of course if not meant to me, never mind