PLEASE READ - Jeff's mom's post -

Trubrit
Trubrit Member Posts: 5,754 Member
edited January 2017 in Colorectal Cancer #1

Please let me welcome Jeff's Mom to the forum and please share your survivor stories and help for her. Thank you! 

Comments

  • Jeff's mom
    Jeff's mom Member Posts: 20
    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. 

  • Trubrit
    Trubrit Member Posts: 5,754 Member
    Find yourself another Oncologist....

    Would be my first suggestion.  One who is not going to write you off, even IF you are classified as terminal.  There are many here who are Stage IV and surviving. Sure, we might succumb to the disease at some point in the future, but giving up is not an option.

    If there are no standard treatments out there, then surely you can qualify for trials. This is where you participate in trials of new drugs that haven't been cleared by the FBA. Basically you are being used as a Guinea Pig, but for many it can extend life.  I have a friend who has terminal kidney Cancer, he has been on two different trials for three years and is surviving. 

    A second opinon from another Oncologist is the way I would go.  DO NOT GIVE UP! We here know the devestation of the Stage IV diagnosis, and you do sink to your lowest, that is totally normal and acceptible. It is truly horrifying! BUT, you must not give in to to despair. Find a way to rise above your despair so that you can FIGHT.  You need streght of body and will to find a place where you can be positive and stride ahead. If your Oncologist is not going to fight with you, then find another one who will. 

    Funeral plans aren't a bad thing regardless of your diagnosis, so don't worry about that. 

    I can't tell you that you are going to live, but I can tell you that you can live until you die. 

    As for symptoms you will experience if your decline; they are different for all. We have had many here who were posting days before they passed, with narry a sign. Others who were struggling with acute pain and finally, they were no longer able to post. It can go from one extreme to the other. Many pass because the Cancer growth in the liver causes liver failiure. 

    We will fight with you. If a trip to your GP to get help with depression bought on by this disease is what you need, go. You need to be positive as you move forward, and if medication helps you achive that (at least to start with) then go for it. 

    Be patient. The forum runs slow, but others with much more knowledge (and finesse in words) will be along to help and support you. 

    TRU

  • NewHere
    NewHere Member Posts: 1,417 Member

    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. 

    What Tru Said

    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

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited January 2017 #5
    I've read several things

    I've read several things since reading your thread, and nothing has stated that Oxaliplatin is the only goto treatment for SRC, I'd ditch that doctor and find someone with more options, and heart. You deserve better....................................................Dave

     

     

  • Joan M
    Joan M Member Posts: 409 Member
    Find another doctor!  My

    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

       

  • Jeff's mom
    Jeff's mom Member Posts: 20
    edited January 2017 #7
    help and advice

    The help, advice and support from survivors means so much.  I was stunned that I actually got any answer to my post(s).  Tru...thank you so much.  And everyone:  you are making me feel better already!  God Bless you  all.

  • Bellen
    Bellen Member Posts: 281
    edited January 2017 #8
    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.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    My cancer is different than

    My cancer is different than yours so I have nothing to offer as far as ideas or experiences. If I were you I'd change to another doctor as soon as possble as others have suggested. What he said is not good enough. It's dismissive and rude and shows no thought to your mental state. Shame on him.

    I hope you can find someone more compassionate and helpful. And there's got to be more options than oxyplatin, yuck. I hate it. And I can no longer have it, either. Thank goodness.

    Best of luck and keep us all up to date on what's happening. I'm sure more people with your type of cancer will respond.

    Hugs,

    Jan 

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited January 2017 #10
    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,

    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
    Bellen Member Posts: 281
    edited January 2017 #11
    SRC

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

  • Jeff's mom
    Jeff's mom Member Posts: 20
    edited January 2017 #12
    Bellen said:

    SRC

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

    All comments are welcome

    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
    LauraCF Member Posts: 27
    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. 

  • Jeff's mom
    Jeff's mom Member Posts: 20
    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. 

    Thank you, LauraCF for your response

    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.

  • lizard44
    lizard44 Member Posts: 409 Member
    I agree with those who say find another oncologist

    Although I don't have SRC, I'm a stage  IV survivor, diagnosed with low rectal cancer in  April 2015. I was scheduled to begin chemo-radiation therapy to shrink the tumor before surgery. A PET scan a week or so later showed I also had liver mets so the treatment plan changed to deal with the liver, which became the primary concern of my surgeon, and I was started on FOLFOX plus Avastin, followed by  28 chemo-radiation treatments with a  5-FU pump 24/5. Like Joan M, my  rectal tumor all but disappeared and the liver mets shrank.  My oncologist began a different regimen  to try to shrink the liver mets  further  for an ablation. I had the RFA ablation in  August 2016 and have been on maintenance chemo with Erbitux and Irinotecan since then. My oncologist told me she has a whole arsenal of weapons to fight the cancer and when one stopped working,  she would try another.  I have, for the whole duration of treatment, suffered few debilitating side effects other than extreme fatigue  for the day of and the day after chemo.  I  have some  neuropathy in my feet but as long as I keep my feet warm it isn't too bad.  I have developed  a nasty case of extremely dry skin from the Erbitux and I have to keep trying different products to combat it, but it's  manageable.

    The cancer may  get me eventually but in the meantime I'm going to live as best I can and not be consumed by the idea that I have adeath sentence hanging over me. I asked my  oncologist this time  last year if I should order seeds to plant  and she said, "order the seeds" I asked the same thing this week with the same response. I love the adage, "to plant a seed is to believe in tomorrow," so  I'm  planning a garden and hoping for the best and trying to squeeze every ounce of living I can out of each day.

    My oncologist and my surgeons have always been up front with me about the seriousness of my diagnosis, but they have also always given me hope and encouragement, and have made me feel as though they are not just there to treat  the cancer but to treat me as a whole person who also has  fears, concerns and questions and a life outside the diagnosis. I hope you  find an oncologist who can do the same for you. 

    Grace (lizard44)

     

  • marbleotis
    marbleotis Member Posts: 720 Member
    Find Another Onc - Signet Cell Also

    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!

  • blessed39
    blessed39 Member Posts: 90 Member
    "How I Beat Stage Four Colon Cancer"

    Dear Trubrit. If you would be interested in my story "How I Beat Stage Four Colon cancer" just go to my site and click on blog and my story will come up. I have no medical advice, just what worked for me. God Bless   blessed39

  • NewHere
    NewHere Member Posts: 1,417 Member
    edited January 2017 #18
    marbleotis

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

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    NewHere said:

    marbleotis

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

    I"m going to need another clue here

    This about getting to NY/Sloan?

  • NewHere
    NewHere Member Posts: 1,417 Member
    edited February 2017 #20

    I"m going to need another clue here

    This about getting to NY/Sloan?

    Not Sure If That Was On My Comment

    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 :)