Any idea what to expect....

Devasted
Devasted Member Posts: 185
edited March 2014 in Colorectal Cancer #1
My husband just had treatment #11. Last treatment #12 will be Feb 9....YEAH!
Scheduled to have scan week after last treatment and follow up with onc.
He has stage iv rectal cancer (mets to liver) was stable (no shrinkage)at last scan.
He is really tired now but after recovering from treatments he does great!

He has not had surgery yet and was dx'd last June. They were planning to do
surgery but after the PET Scan the liver mets were much more important and
he has had no symptoms from the rectal tumor after radiation. He had radiation and xeloda
and started Folfox6 with avastin scheduled for 12 treatments.

I know things can change quickly and "What to expect" is probably a useless question but you guys have more experience and have certainly have helped us through thus far! When he was dx'd
the onc. gave us a book and I was certain he would not be here now and somehow
I found this site and realized there are stage iv survivors! Thanks to you all!
He's sure he will get through this...

I believe the plan is to check CEA every two weeks and CT Scan at three months??
Does this sound right? And there has to be a 6-8 week break before surgery if
he has had avastin, right?

What do you think?

And I was laid off last Friday...this last year has been an awakening...

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Absolutely Correct!
    Hi there

    Long time, no see :)

    Good to see you again. And yes to your questions: CEA check every 2 months and CT scan every 3 months is correct and it sounds like your onc is dialed in on the right check-ups...I did this many times, so I can only agree with his suggestions. This way, you'll be staying on top of it!

    Oh, and correct on the Avastin too - 6 to 8 weeks after surgery before they can begin to introduce this. And when they start, the 1st infusion should be 90min - 2nd infusion 60min - 3rd and future infusions should be 30-min. They start you long and work you down if you tolerate the infusion well.

    I'm sorry you were laid off - crummy to lose your job when you've got all of this going. Life is a hard proposition most days for any of us, but with Cancer, the everyday things in life that we also have to endure, make for the 'challenges' that make us who we are. I hope you will be getting unemployment for a spell to help things and that you will find another position when you can.

    -Craig
  • Paula G.
    Paula G. Member Posts: 596
    #3
    Hi,
    It sounds like from what
    Hi,
    It sounds like from what my husband is going through that you are on track. My husbands Onc does his CEA once every three weeks when he gets his avastin. CT every Three months.
    He had colon surgery in Nov. of 2008. Has cancer in liver, lungs and adrenal glad and is inoperable.

    Hope your husband can get to a point where he can have surgery and remove it all. Best to you. Paula
  • Devasted
    Devasted Member Posts: 185
    #4
    Paula G. said:

    Hi,
    It sounds like from what
    Hi,
    It sounds like from what my husband is going through that you are on track. My husbands Onc does his CEA once every three weeks when he gets his avastin. CT every Three months.
    He had colon surgery in Nov. of 2008. Has cancer in liver, lungs and adrenal glad and is inoperable.

    Hope your husband can get to a point where he can have surgery and remove it all. Best to you. Paula

    Thanks Paula and Craig
    Thanks, the treatment issues are new to us and we want to be sure we're on the
    right track or at least know what questions to ask at the end of chemo and the
    beginning of the next phase. Your experience is invaluable!


    Craig,
    Thanks for the reply, was hoping to hear from you. What are the conditions
    required for RFA?

    As far as my job, I'm ok with it and think it may work out for the
    best. Was a designer for the housing industry and checking into nursing...

    Health insurance...Wasn't there was a post here that,
    if stage 4 could use Medicare Insurance?

    You're such an inspiration and a source of hope for us. Thanks so
    much for all your posts, enjoy reading them and think of you often...
    Also like your choice of music and during bad days...You've got a friend, too!
  • zenmonk
    zenmonk Member Posts: 198
    #5
    sounds like my story
    Pretty much exactly what I am going through. It sounds like you are on the same plan as me. Its been working great for me so far. I am also stage 4, mets to liver. We waited about 4 weeks after the chemo for the surgery. I still lost alot of blood but the surgery went great.
    Good Luck. Praying.
  • Crow71
    Crow71 Member Posts: 679 Member
    #6
    What to expect? Man that
    What to expect? Man that question has kept me up many nights. It isn't a useless question, but other than coming up with a variety of scenarios, it's impossible to answer. Except to say, "I expect to survive this!!"

    I don't have anymore experience than you do. It is great to have folks like Craig to help get answers. But I'll share my experience so far. My situation is similar to your husband's. My course of treatment has been a bit different. My dx of rectal cancer came in July '09. I was initially prepared for radiation - even got tattoos. My Medonc looked at the CT scans, which showed a very manageable 5 liver mets, and was concerned about "irregularities" deeper in my liver. An MRI showed that the irregularities were indeed another 10 or so mets scattered around my liver. We decided to skip radiation, do a colostomy to avoid any emergency situations -like total blockage, and hit everything with systemic chemo. During my colostomy surgery the surgeon looked around and found cancer in my peritoneal lining as well.
    I had Folfox # 11 this week also. I've had CT scans every 2 months. Not sure why 2 and not 3. So far the scans show a 30% overall reduction. I'm hoping to become a candidate for surgery, but it's not an option at this point. Is your husband's liver resectable?
    Roger
  • Kerry S
    Kerry S Member Posts: 606 Member
    #7
    Hang in there
    I was DX after a CT scan 5/08 rectum node liver. The cancer was type 3. They did the surgery on the rectum transanal. Then had the PET scan. Scan showed cancer was in the node and liver. I then had the 6 weeks of chemo/rad. The liver showed some growth but the node was clear.

    They opened me up to do the liver resection and then just closed me back up as there was too much to cut out. Had liver embolazation to kill off ½ of my liver 12/08.

    CT scan 1/09 showed no cancer as did scans CT 2/09 along with colonoscopy, PET 8/09 and CT 12/09. My colon surgeon does an office scope on me every 6 months. Says he can’t even tell I had radiation. I had it easy compared to most folks on this site. My advice is to plan for the worst and fight like hell for the best.
  • Devasted
    Devasted Member Posts: 185
    #8
    Crow71 said:

    What to expect? Man that
    What to expect? Man that question has kept me up many nights. It isn't a useless question, but other than coming up with a variety of scenarios, it's impossible to answer. Except to say, "I expect to survive this!!"

    I don't have anymore experience than you do. It is great to have folks like Craig to help get answers. But I'll share my experience so far. My situation is similar to your husband's. My course of treatment has been a bit different. My dx of rectal cancer came in July '09. I was initially prepared for radiation - even got tattoos. My Medonc looked at the CT scans, which showed a very manageable 5 liver mets, and was concerned about "irregularities" deeper in my liver. An MRI showed that the irregularities were indeed another 10 or so mets scattered around my liver. We decided to skip radiation, do a colostomy to avoid any emergency situations -like total blockage, and hit everything with systemic chemo. During my colostomy surgery the surgeon looked around and found cancer in my peritoneal lining as well.
    I had Folfox # 11 this week also. I've had CT scans every 2 months. Not sure why 2 and not 3. So far the scans show a 30% overall reduction. I'm hoping to become a candidate for surgery, but it's not an option at this point. Is your husband's liver resectable?
    Roger

    Liver not resectable...yet
    There are seven mets in his liver, small mets. But the problem is they are scattered...
    left and right lobe. He is seeing a surg. onco. in Chapel Hill (along with his regular
    onc.)and when we first met in June he and the reg. onc. agreed that the rad. and xeloda should be first because my husband was experiencing some pressure and bleeding. The radiation resolved that problem, although the rectal tumor did not go away...he had five liver mets before xeloda/rad. and seven afterwards. The xeloda---didn't seem to help with the liver mets(maybe it managed somewhat) The surg. onc. said there were some "things" that could be done with the liver but after the mets went from 5 to 7 they said systemic chemo should begin immediately. So that started in September---Folfox.

    This is definintely a step by step process and it seems we are "comfortable" when we are in
    a "phase" of treatment...get a little anxious when it's time for a change
    and I guess there's a fear of the unknown. So far the folfox has been
    something he can manage. Although, the fatigue seems to last longer now. Only one more treatment and it's the day before his 51st birthday....

    What has been your experience with Folfox?

    Thanks for your reply!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #9
    Devasted said:

    Thanks Paula and Craig
    Thanks, the treatment issues are new to us and we want to be sure we're on the
    right track or at least know what questions to ask at the end of chemo and the
    beginning of the next phase. Your experience is invaluable!


    Craig,
    Thanks for the reply, was hoping to hear from you. What are the conditions
    required for RFA?

    As far as my job, I'm ok with it and think it may work out for the
    best. Was a designer for the housing industry and checking into nursing...

    Health insurance...Wasn't there was a post here that,
    if stage 4 could use Medicare Insurance?

    You're such an inspiration and a source of hope for us. Thanks so
    much for all your posts, enjoy reading them and think of you often...
    Also like your choice of music and during bad days...You've got a friend, too!

    Hey D :)
    Always so nice to hear from you - I have missed you around here these days and have wondered where you have been - I know we are all on and off at different times for different things, so it's always good to reconnect with your friends.

    Your kind words touch me - and I caught the reference to "You've Got a Friend" - you do remember don't you? How great! You know you've got one here in the Lone Star state too :)

    RFA is done when the liver is deemed "not resectable." It depends on the position of the tumor and how close to major blood vessels the tumor is.

    Your liver has to be good enough to allow a resection (mine was not) and if it is not, then RFA is another good alternative to having a liver resection. In fact, statistics show that RFA has an "Equal to or Better Success Rate" than traditional liver resection.

    In my case, RFA got most of the tumor, but there was still outlying edges of the tumor remaining, again due to the tumor being closed a major artery in the liver. So, we did CyberKnife (3 treatments) which wiped out the tumor at the local level. While the surgeon had me opened me up, he put in the "seed markers" in and around the tumor area, so that CyberKnife could be programmed to follow that route and take the rest of the tumor out...good idea to have a surgeon put those in, just in case. He's already in, so it's a good step whether this occurs or not, better to be safe than sorry and have to be re-opened.

    RFA and CyberKnife, the ONE-TWO punch! I had to do systemic chemo behind all of this: Folfox, Avastin, and Xeloda, but it saved my life, so I have nothing but high praise for the procedures and for my medical team, who was thinking ahead when they put the seeds in my liver...the surgeon I used help "pioneer" RFA in its infancy and he is world-renowned and at Baylor University in Dallas.

    Soooo, soooo good to hear from you! Stay in touch - hope this helps. RFA ROCKS!

    -Craig
  • sfmarie
    sfmarie Member Posts: 602
    #10
    Gosh
    I am sorry to learn you have been laid off amidst everything else you are dealing with.

    Depending on the treatment, you can skip one cycle of Avastin and still get treatment. It may be longer with surgery.

    My sister is getting liver surgery next week! She has been on chemo since April of last year. She had an emergency surgery where they took out the tumor that perforated her colon, her ovaries (it spread there) and that is when they noted it was in the liver and peritoneum.

    There are stage IV survivors and she has already beaten the odds she was first given when diagnosed. So, don't listen to anyone that gives you a timeline and keep on fighting!

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    #11
    Devasted said:

    Liver not resectable...yet
    There are seven mets in his liver, small mets. But the problem is they are scattered...
    left and right lobe. He is seeing a surg. onco. in Chapel Hill (along with his regular
    onc.)and when we first met in June he and the reg. onc. agreed that the rad. and xeloda should be first because my husband was experiencing some pressure and bleeding. The radiation resolved that problem, although the rectal tumor did not go away...he had five liver mets before xeloda/rad. and seven afterwards. The xeloda---didn't seem to help with the liver mets(maybe it managed somewhat) The surg. onc. said there were some "things" that could be done with the liver but after the mets went from 5 to 7 they said systemic chemo should begin immediately. So that started in September---Folfox.

    This is definintely a step by step process and it seems we are "comfortable" when we are in
    a "phase" of treatment...get a little anxious when it's time for a change
    and I guess there's a fear of the unknown. So far the folfox has been
    something he can manage. Although, the fatigue seems to last longer now. Only one more treatment and it's the day before his 51st birthday....

    What has been your experience with Folfox?

    Thanks for your reply!

    Liver
    Wanted to add that my sister had 12 liver mets. was considered not resectable in Sep. and now she is! Keep HOPE alive. She is only 40.
  • Paula G.
    Paula G. Member Posts: 596
    #12
    Devasted said:

    Thanks Paula and Craig
    Thanks, the treatment issues are new to us and we want to be sure we're on the
    right track or at least know what questions to ask at the end of chemo and the
    beginning of the next phase. Your experience is invaluable!


    Craig,
    Thanks for the reply, was hoping to hear from you. What are the conditions
    required for RFA?

    As far as my job, I'm ok with it and think it may work out for the
    best. Was a designer for the housing industry and checking into nursing...

    Health insurance...Wasn't there was a post here that,
    if stage 4 could use Medicare Insurance?

    You're such an inspiration and a source of hope for us. Thanks so
    much for all your posts, enjoy reading them and think of you often...
    Also like your choice of music and during bad days...You've got a friend, too!

    Question
    If there was a post about stage 4 and medicare I would love to find it. John is on Cobra and the payments are a bunch. They told us he would have to wait 24 months to get medicare.
  • kimby
    kimby Member Posts: 797
    #13
    Paula G. said:

    Question
    If there was a post about stage 4 and medicare I would love to find it. John is on Cobra and the payments are a bunch. They told us he would have to wait 24 months to get medicare.

    Paula
    Yes, once you are approved for ssdi it is a 24 mo wait. I went on disability 1/09 but they determined my true disability began at diagnosis 8/07. My medicare starts in February.

    Hope this helps,

    Kimby
  • kimby
    kimby Member Posts: 797
    #14
    Wow
    You have been through so much and now laid off. I'm so sorry to hear that.

    You've gottten such great advice from everyone else and I wanted to give you my well wishes, also. Look for us stage IV survivors! Many are much further along than me and they are an inspiration.

    I have a brand new strategy based on a comment from my oncologist. Out wit. Out play. OUTLAST. We can beat this thing.

    Please give your husband my best and remember to take care of yourself.

    Kimby

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