Stage IV Diagnosis - How to get on with life?

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Comments

  • GoBucks
    GoBucks Member Posts: 28
    geotina said:

    Go Bucks
    Well, people have already given you good advise. My hubby is Stage IV, mets to liver and lungs. He was diagnosed 3/09 and still going strong. Worked thru all the surgery and chemo and in fact, has really never been off of some sort of chemo treatment. After a while you learn to accept that well, it is what it is.

    You can check into social security disability. As a Stage IV, it is pretty automatic if you have paid into the system. If you have children under 18 you can collect on them also. You would be eligible for Medicare (just you though)but that does not kick in for 2 years and therein lies the problem for many. If you quit your job you may be without health insurance and private insurance in most instances is cost prohibitive so do you homework.

    As long as you can do so, continue working, why not?

    Take care and let us know how the scans go.

    Tina

    Good Info
    I might also be able to get some disability through work - but right now my plan is to wait and see what Jan brings. Definitely ready to start a new year.
  • abrub
    abrub Member Posts: 2,174 Member
    Mine was found on my ovary, too
    but the origin was appendiceal. The main tumor encompassed my ovary, but it had seeded throughout my belly. I'm stage 4, but doing great, 4 1/2 years out. Do get a second opinion. Find out if intraperitoneal chemo is an option for you, HIPEC or not heated. (I had the not heated variety.)

    Good luck, and keep breathing!
    Alice
  • GoBucks
    GoBucks Member Posts: 28
    abrub said:

    Mine was found on my ovary, too
    but the origin was appendiceal. The main tumor encompassed my ovary, but it had seeded throughout my belly. I'm stage 4, but doing great, 4 1/2 years out. Do get a second opinion. Find out if intraperitoneal chemo is an option for you, HIPEC or not heated. (I had the not heated variety.)

    Good luck, and keep breathing!
    Alice

    HIPEC
    Alice Can you do HIPEC after the original surgery?
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    GoBucks said:

    Not Too Many of Us
    Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
    April

    I have no idea why no maint.
    I have no idea why no maint. chemo., my onc. just didn't bring it up at all. I don't know if they do maint. chemo. in Ontario...maybe someone else could answer that one. I have brought up the oral chemo. to him in the past, he simply discounts it right away, as does the other onc. at my cancer center....I don't know why.... when they thought it was ovarian cancer they sent me by ambulance to see one of the top gyno. oncs. at another cancer centre. Even after he examined me he said ovarian....then after surgery when I saw one of my surgeons (I had two surgeons, one for colon one gyno.) for follow-up he said they were all shocked it was colon cancer, He made the comment it's been reported (reported where or why I don't know).
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    Look Forward to many more experiences and adventures!
    A friend of mine Jim, in his late 70's during his third round of colon cancer told me, "It is better to look down at the flowers then up at them." Jim lost his forth round of cancer at 91! He helped me so much my with my business, and my outlook of life.

    Do not believe that you have an expiration date, you are not a bottle of milk. Every day can be full of new experiences and every day can be a new adventure.

    Look Forward to many more experiences and adventures!
    Best Always! mike
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    GoBucks said:

    HIPEC
    Alice Can you do HIPEC after the original surgery?

    HIPEC is not done as a stand alone procedure.
    HIPEC is done immediately after a surgery. HIPEC is not done as a stand alone procedure.
    Moore's Cancer Center is one of the leaders in HIPEC research. I consulted with them and it is compelling. If I needed another Cancer Surgery, I would probably do it with HIPEC. http://cancer.ucsd.edu/Pages/default.aspx

    Best Always, mike
  • buckeye2
    buckeye2 Member Posts: 428 Member
    As you might have guessed
    As you might have guessed from my user name, we share residency in the same great state. My husband had HIPEC done at the James by Dr. Abdel-Masih (sp?) just recently. We both really liked him and the future holds the cards for whether or not the outcome was worth it. I try to offer those new to the Board the two quotes that I learned from the Board that have helped me.

    "This is a marathon,not a sprint".
    This has helped me realize to buckle down for the long haul.  I can't cry everyday and put our family's life on hold.  We have to keep living our life as close to normal as possible.


    "Feed the faith.  Starve the fear".

    I think the worst symptom associated with these disease may be what it does to your thoughts.  They can be controlled with some effort.  I try to shove the bad ones down as far as I can.  

    Stay on the Boards.  The people here are very knowledgeable.  Either only smart people get colon cancer or only smart colon cancer patients post.  
    Regardless, the information will help you and the encouragement will "feed the faith".

    Lisa
  • abrub
    abrub Member Posts: 2,174 Member
    GoBucks said:

    HIPEC
    Alice Can you do HIPEC after the original surgery?

    Yes - it can be done as an additional surgical procedure
    However, I went to Memorial Sloan Kettering, where the original plan assumed that all of my tumor had been removed at my "surprise discovery" surgery that the surgeon would do a laparascopic exploration, and place a belly port for IP chemo, which is done after surgery. Unfortunately, there was more tumor, so Dr. Paty ended up doing a full laparatomy (full open surgery) to remove my omentum, and resect my colon in 3 places, before placing the belly port. He had to remove all visible tumor before the IP chemo. I then started IP chemo 48 hours later, and had cycles every other week for a while.

    At MSK, they felt that this was the best option for getting at the cancer cells that had escaped when my tumor had ruptured way back when (we don't know when that occurred - years ago.)

    It might be worth getting an opinion at MSK.
  • colorectal cancer with krukenberg tumor removal
    Three weeks before my 45th birthday on 8/4/2010, I was taken in for emergency surgery to put in a portacath and for 90% colon blockage diagnosed with stage IV with four liver mestases. Then I had chemoradiation to shrink those tumors. Then I had the reconnect the colon and this huge krukenburg tumor on my right ovary that popped out that noone knew about it was 10 x 15cms!! Then 1/2011 it was chemo again with avastin for three months to shrink the liver tumors. Finally, I had a liver wedge resection with RFA on 5/31/11 at UCSF and I stayed only four days in hospital!!!!! It seemed like a lot of waiting in between and a bit like a dream as I look back on it.
    I did go back to work while I was on the 2nd round of chemo and avastin and I worked right up until my liver op then I taught summer school six weeks later. I had a 2 on my CEA July 2011 which gave me the all clear to go back to work. clear colonoscopy in august.

    Avastin worked great at shrinking tumors. I did not have too many side effects from the other chemos except loss of energy and some tingling in my fingers and toes with coldness. I did not loose my hair either time when I had chemo!! I kept away from any foods like mushrooms that would blow me up. The radiation was fine until the final five days (25 total). My bladder felt like I had to pee all the time and it was difficult for me to get up and down without taking my time. It made me go into menopause in full force with hot flashes so I got a patch and that remedied that!!!

    Great doctors, family and friends got me feeling and looking great again. best of luck to you. Keep positive attitude and positive people around and dont be afraid to get some counseling......I just did last month and its been another adventure for me!!!
  • dmdwins
    dmdwins Member Posts: 454 Member

    colorectal cancer with krukenberg tumor removal
    Three weeks before my 45th birthday on 8/4/2010, I was taken in for emergency surgery to put in a portacath and for 90% colon blockage diagnosed with stage IV with four liver mestases. Then I had chemoradiation to shrink those tumors. Then I had the reconnect the colon and this huge krukenburg tumor on my right ovary that popped out that noone knew about it was 10 x 15cms!! Then 1/2011 it was chemo again with avastin for three months to shrink the liver tumors. Finally, I had a liver wedge resection with RFA on 5/31/11 at UCSF and I stayed only four days in hospital!!!!! It seemed like a lot of waiting in between and a bit like a dream as I look back on it.
    I did go back to work while I was on the 2nd round of chemo and avastin and I worked right up until my liver op then I taught summer school six weeks later. I had a 2 on my CEA July 2011 which gave me the all clear to go back to work. clear colonoscopy in august.

    Avastin worked great at shrinking tumors. I did not have too many side effects from the other chemos except loss of energy and some tingling in my fingers and toes with coldness. I did not loose my hair either time when I had chemo!! I kept away from any foods like mushrooms that would blow me up. The radiation was fine until the final five days (25 total). My bladder felt like I had to pee all the time and it was difficult for me to get up and down without taking my time. It made me go into menopause in full force with hot flashes so I got a patch and that remedied that!!!

    Great doctors, family and friends got me feeling and looking great again. best of luck to you. Keep positive attitude and positive people around and dont be afraid to get some counseling......I just did last month and its been another adventure for me!!!

    Stage 4 -mets to ovaries
    You are all right ...there are not too many of us with our metastasis to the ovaries. I only "heard" of one other person of my oncologists back when I was diagnosed in 2007.

    The good news is that I am 4+ years from diagnosis...currently NED and living well.....be encouraged...if I could do it so can you!!! Bad days with an occasional good day in the beginning but one day at a time...and then the good days started to out number the bad!

    Wishing you great success and many good days!

    Smiles,
    Dawn
  • Nana b
    Nana b Member Posts: 3,030 Member
    dmdwins said:

    Stage 4 -mets to ovaries
    You are all right ...there are not too many of us with our metastasis to the ovaries. I only "heard" of one other person of my oncologists back when I was diagnosed in 2007.

    The good news is that I am 4+ years from diagnosis...currently NED and living well.....be encouraged...if I could do it so can you!!! Bad days with an occasional good day in the beginning but one day at a time...and then the good days started to out number the bad!

    Wishing you great success and many good days!

    Smiles,
    Dawn

    You have many tools
    You have many tools available to fight the beast, but they can be unsuccessful, if you succumb to self pity and fright. Just get out there and kick some ****. Keep active, eat well. And just live. Don't take anything for granted.

    Stretch in the morning and tackle the day ahead.

    My thing is, I'm in no hurry. I refuse to stress and I will get to it when I get to it! Far most, my goal is to appreciate what I ave and make my home, my haven. No matter, where I am in my life or home, I now feel content.

    Hang in there!

    Stage 4, in remission 2.5 years
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi
    Praying for excellent health for you in the future.

    *hugs*
    Gail