Diagnosed 4/8/09 with BOTH Adenocarcinoma of Rectum and Adenocarcinoma of Esophagus. Started Chemo

Fernando H
Fernando H Member Posts: 30
edited March 2014 in Colorectal Cancer #1
I'll be posting on this board and the esophageal board as I've got both.

On April 7th, 2009 I had rectal bleeding from 7pm thru 5am prompting my visit to a gastroenterologist on the morning of the 8th. I had dismissed prior blood in stool as being related to hemorrhoids for over a year. Aside from an obvious need for a stat colonoscopy, regular questioning by the physician's assistant regarding my heartburn I had for over 15 years made for an investigative (and life saving) upper endoscopy. I had been simply popping antacid tablets successfully quenching the fire. It is almost as if the major bleeding I had was a swift kick in the rear to go do something about it. Thanks to that, the esophageal adenocarcinoma was found early on.

4/9/09 Colonoscopy confirmed rectal tumor, Endoscopy revealed suspect tissue near a section of Barrett’s Esophagus. Biopsies taken of both.

4/9/09 Gastroenterologist immediately sent me for a CAT Scan that same afternoon.

4/10/09 Biopsies came back positive for two different Adenocarcinoma's (Rectal and Esophageal) just 10 days shy of my 40th B-Day!

4/14/09 Endoscopic Ultrasounds of Rectum and Esophagus at South Miami Hospital resulted in prelim staging of T-3 for both tumors. No Metastasis, No Lymph node involvement confirmed.

Then the blur of multiple doctors’ appointments began:
Clinical Oncologist, Cardio Thoracic Surgeon, Radiation Oncologist, Colo-rectal Surgeon and second opinions for each specialty at University of Miami Hospital's Sylvester Comprehensive Cancer Center.
Differing opinions abound on my rare situation of treating these two different cancers at the same time. Variances from Standard of Care for each malignancy were offered by each physician. Head spins while attempting to earn an overnight PhD researching the internet for answers.

Surgeons have differing surgical approaches. Some offer minimally invasive laparoscopic approach. Others favor traditional open approach.

4/27/09 UM Sylvester repeats Endoscopic Ultrasound due to discrepancies of measurements and exact location of esophageal tumor as reported by South Miami Hospital.
GREAT NEWS: esophageal tumor found to be a T-1 (not T-3 as SMH had reported)!
This means no radiation to the chest!

More and more meetings to arrive at treatment plan. My case is discussed in numerous cancer boards in multiple hospitals. (Yes, I obtained a 3rd opinion as well from the Cleveland Clinic in Weston, Fl)

5/1/09 Port placement in upper chest for chemo

5/5/09 CT simulations complete. Permanent tattoos for pelvic radiation.

5/7/09 Chemo and Radiation begins (just 30 days from diagnosis):
FOLFOX of 5FU via pump on port 24/7 and Oxaliplatin added once a week
Radiation of rectal tumor 5 days a week (28 treatments)

These "C" things have received their eviction notices. Sheriff will be escorting all malignancies out with no mercy!

I'm ready for this! Hit me with treatment hard! Gotta get over both of these "C" things soonest.
Wonder how my body will tolerate treatment.
Doesn't matter though...
LET’S DO THIS!
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Comments

  • nudgie
    nudgie Member Posts: 1,478
    Journey
    You have been through a lot since April, but you have found the best place to receive, support, friendship, comfort and positive feedback. Consider us your Internet Family for this new journey in your life.

    Never stop asking all your doctors/nurses questions, because there is never a dump question at this point.

    We are here for you anytime. Please keep us posted
  • Fernando H
    Fernando H Member Posts: 30
    nudgie said:

    Journey
    You have been through a lot since April, but you have found the best place to receive, support, friendship, comfort and positive feedback. Consider us your Internet Family for this new journey in your life.

    Never stop asking all your doctors/nurses questions, because there is never a dump question at this point.

    We are here for you anytime. Please keep us posted

    short trips to the dump
    Thanks Nudgie! Even while under "twilight sedation" while getting my port installed, they couldn't keep me from talking, asking questions, and cracking jokes.

    I'm really not looking forward to a journey. I'd like to think of it as a series of short trips to the dump to get rid of this stuff and not lug it around much longer. I am confident that before long, the real journey will continue with my family (cancer free)!

    To me it is easier to visualize the little/many steps rather than a loooooong road ahead.

    Thanks for your kind words. I look forward to asking many questions here as I do not know how my body will react to treatment at this point.
  • KathiM
    KathiM Member Posts: 8,028
    Welcome!
    Hey, I got the 2-fer, too! Squamous cell carcinoma of the rectum (couldn't even get CANCER in the right place...ROFL) and adenocarcinoma of the breast....

    I LOVE your fighting spirit!!!! You GO!!!!!! I contend that I made the environment so bad for the cancer, that it packed up and LEFT!!! I took EXTREMELY good care of my body, knowing what it was going thru, and found something to laugh about every day, even on my 'dark' days...

    Welcome to the semi-colons!

    Hugs, Kathi
  • VickiCO
    VickiCO Member Posts: 917
    Good for you!
    You sound as if you are going to be a very good advocate for yourself and that is important! Let me welcome you to this board, and say I am sorry we had to meet like this.

    My story is that I was being examined/poked/prodded for esophageal problems that kept changing. No cancer found, went from acid reflux to non-acid reflux, wore a computer that I had to swallow, and the symptoms kept changing. I was even taken to emergency for a suspected heart attack...heart was fine. Finally I was in the gastro doctor's office and I casually commented on my 'bleeding hemorrhoids', constant constipation and anemia. He immediately ordered a colonoscopy that saved my life. I had a tumor in the rectum. He determined that the esophageal problems were my body trying to say something was wrong in the system and we weren't paying attention! As he put it, "It's all one unit, from the mouth to the anus." I have completed six weeks of chemo/radiation, surgery, and 2 of 4 follow-up chemo treatments.

    So, good luck on the journey. We are here for support, hugs, prayers, questions, or just venting.

    STAY POSITIVE! Vicki
  • Fernando H
    Fernando H Member Posts: 30
    KathiM said:

    Welcome!
    Hey, I got the 2-fer, too! Squamous cell carcinoma of the rectum (couldn't even get CANCER in the right place...ROFL) and adenocarcinoma of the breast....

    I LOVE your fighting spirit!!!! You GO!!!!!! I contend that I made the environment so bad for the cancer, that it packed up and LEFT!!! I took EXTREMELY good care of my body, knowing what it was going thru, and found something to laugh about every day, even on my 'dark' days...

    Welcome to the semi-colons!

    Hugs, Kathi

    2-fer Club!
    Kathi,
    Seems I've got good company in the 2-fer club. You know, I've lost 20 pounds in the past month simply from the complete change in my eating habits. Of course, it is easy to do when I weighed 283lbs on 4/7/09. At 6'1" charts say I should be weighing 185 or so, but not even in my high school prime was that possible. I've also been pampering my body with fruits and veggies that I already love after abusing it with junk food and soft drinks for so long. I know it is not the time to start losing weight, but the shift to healthier eating has that effect, which I think is an unevitable good thing.

    ...now, where is that pure aloe vera shooter with organic carrot juice chaser.

    I think we were given the 2-fer 'cause just one would have been an odd number (Ha!)
  • lisa42
    lisa42 Member Posts: 3,625
    hello
    Hi Fernando,

    Wow- a double cancer whammy- I'm sorry to hear that. I love your fighting spirit, though! That's how I felt- you've got to look at starting chemo like looking at the start of a fight that you're definitely going to win! Like you, I only wanted to hear and think about things in small, short-term steps. To have thought of a long term journey ahead would have been way too overwhelming for me at the time. It sounds like you're going to think of each cancer/chemo treatment as a kick in the cancer's @ss! Bring it on!

    Hopefully you'll be able to tolerate the chemo alright. If it does slam you, though, please don't let yourself get discouraged- you may be down for awhile, but you'll bounce back up and will keep getting back in the fighting ring!

    God bless,
    Lisa
  • snommintj
    snommintj Member Posts: 601
    lisa42 said:

    hello
    Hi Fernando,

    Wow- a double cancer whammy- I'm sorry to hear that. I love your fighting spirit, though! That's how I felt- you've got to look at starting chemo like looking at the start of a fight that you're definitely going to win! Like you, I only wanted to hear and think about things in small, short-term steps. To have thought of a long term journey ahead would have been way too overwhelming for me at the time. It sounds like you're going to think of each cancer/chemo treatment as a kick in the cancer's @ss! Bring it on!

    Hopefully you'll be able to tolerate the chemo alright. If it does slam you, though, please don't let yourself get discouraged- you may be down for awhile, but you'll bounce back up and will keep getting back in the fighting ring!

    God bless,
    Lisa

    Lucky dog
    Welcome to the Double Whammy club. Congrats on the stage 3 no mets. The next 6 months or so are going to blow but I'm sure you'll do fine. Just treat everything as if it is routine and don't let it get you down. I never had radiation so I can't offer any advice on the subject but there are plenty of folks here willing to help and listen.
  • Fernando H
    Fernando H Member Posts: 30
    snommintj said:

    Lucky dog
    Welcome to the Double Whammy club. Congrats on the stage 3 no mets. The next 6 months or so are going to blow but I'm sure you'll do fine. Just treat everything as if it is routine and don't let it get you down. I never had radiation so I can't offer any advice on the subject but there are plenty of folks here willing to help and listen.

    Wow, lots of activity here
    Thanks Vicky, Lisa and snommintj

    I guess I'm not so special after all ;) with a double whammy.

    Looking forward to treatment. Counting down the minutes.
  • Shayenne
    Shayenne Member Posts: 2,342
    snommintj said:

    Lucky dog
    Welcome to the Double Whammy club. Congrats on the stage 3 no mets. The next 6 months or so are going to blow but I'm sure you'll do fine. Just treat everything as if it is routine and don't let it get you down. I never had radiation so I can't offer any advice on the subject but there are plenty of folks here willing to help and listen.

    Hi Fernando!!
    Welcome to the board! I was newly diagnosed in Jan, 2 weeks before my 44th birthday in Feb with Stage 4 Colon cancer, with a tumor in the liver. I was horrified of course at first, I had no symptoms or didn't even feel sick! I have 4 beautiful children and an awesome hubby as a love/caregiver who are giving me the strength and motivation to keep fighting.

    I was hospitalized TWICE in March, with an infection, and then had a perforated colon, which led to a colostomy and finally after 10 days in the hospital for that, was released in April, chemo was cancelled till I recovered from the surgery, I go tomorrow for my first CT scan since diagnosis, in hopes of the cancer not spreading elsewhere, and back to chemo next Wednesday!

    This might sound weird, but I actually look forward to getting back on chemo, even though it kills both the good and bad cells, my tumors are shrinking, and it does help kill that cancer. I was scared at first, but these great people on this board helped me through my dark times, and are a blessing for me, all the survivor stories have given me so much hope, that I too, want to beat the sh#$ out of this cancer!

    I don't know if you'll be connected to a fanny pack with the chemo to take home with you, but just know to make sure you ask for great anti-nausea meds, like Emend and dexamethasone, when you get disconnected from the pump, you may be really tired, but after about 4 days, you will bounce back to feeling good again, and of course, since I get the chemo every other week, once I bounce back, I have to get chemo again and feel real tired again! but that's ok, I can take 6 months of this, I will be on my 4th treatment out of 12 rounds.

    You sound like someone I could sit around and have a beer with and laugh at this disease, I too liked joking around with the nurses and the doctors, and try to keep that brave smile on all the time, even though it's hard sometimes, and still get really scared.

    Keep on fighting! you will have alot of support here, we will get through this together, keep the faith!

    Hugssss!
    ~Donna
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Fernando
    Welcome to the message boards and I'm sorry to you had to find us but we are a wonderful group of caring people. You have such a positive attitude and that alone is going to get you through so much of your upcoming trials and tribulations. Please post often and let us know how you are doing.

    Kim
  • Fernando H
    Fernando H Member Posts: 30

    Fernando
    Welcome to the message boards and I'm sorry to you had to find us but we are a wonderful group of caring people. You have such a positive attitude and that alone is going to get you through so much of your upcoming trials and tribulations. Please post often and let us know how you are doing.

    Kim

    Hooked up to chemo right now!
    My FOLFOX will actually be a 24/7 fanny pack for the full 5 weeks. I'll be coming in once a week for a refill and application of Oxaliplatin. OK, now I am in actually in the Comprehensive Treatment Unit. They've just hooked me up to the pump delivering some anti nausea medication:
    Palonosetron 0.25 mg via port; x1 on day 1, day 8, day 15, day 22
    dexamethasone 10mg via port; x1 on day 1, day 8, day 15, day 22
    Oxaliplatin 152mg via port; x1 on day 1, day 8, day 15, day 22 for one hour
    flourouacil CADD 506mg/day; continuous infusion on day 1 to day 7 (dose is 200mg/m2/day x 7 days = total 3,542mg for the 7 days) x 5 weeks
    lorazepam 1 mg; Q8H PRN; IV push over 5 minutes as needed for anxiety/agitation or nausea/vomiting. May also be given orally
    prochlorperazine 10mg; Q6H PRN; IV push over 5 minutes as needed for anxiety/agitation or nausea/vomiting. May also be given orally

    Now the nausea medication is really getting me stoned, and I'd probably get off the computer now. and take a nap. good stuff...
  • Shayenne
    Shayenne Member Posts: 2,342

    Hooked up to chemo right now!
    My FOLFOX will actually be a 24/7 fanny pack for the full 5 weeks. I'll be coming in once a week for a refill and application of Oxaliplatin. OK, now I am in actually in the Comprehensive Treatment Unit. They've just hooked me up to the pump delivering some anti nausea medication:
    Palonosetron 0.25 mg via port; x1 on day 1, day 8, day 15, day 22
    dexamethasone 10mg via port; x1 on day 1, day 8, day 15, day 22
    Oxaliplatin 152mg via port; x1 on day 1, day 8, day 15, day 22 for one hour
    flourouacil CADD 506mg/day; continuous infusion on day 1 to day 7 (dose is 200mg/m2/day x 7 days = total 3,542mg for the 7 days) x 5 weeks
    lorazepam 1 mg; Q8H PRN; IV push over 5 minutes as needed for anxiety/agitation or nausea/vomiting. May also be given orally
    prochlorperazine 10mg; Q6H PRN; IV push over 5 minutes as needed for anxiety/agitation or nausea/vomiting. May also be given orally

    Now the nausea medication is really getting me stoned, and I'd probably get off the computer now. and take a nap. good stuff...

    Hang in there!!
    You know I wasn't aware that someone could be on chemo for all those days straight for a month with no week in between, or did I read this wrong, that sounds like alot to be on for such a long time.

    I hope you feel better soon, and rest when your body tells you! (that's what they told me here too...lol)

    Hugssss!
    ~Donna
  • Fernando H
    Fernando H Member Posts: 30
    Shayenne said:

    Hang in there!!
    You know I wasn't aware that someone could be on chemo for all those days straight for a month with no week in between, or did I read this wrong, that sounds like alot to be on for such a long time.

    I hope you feel better soon, and rest when your body tells you! (that's what they told me here too...lol)

    Hugssss!
    ~Donna

    Not letting go!
    The first thought was to put me on FolFox for 46 hours straight every other week.

    When the Esophagus came back as a T1, Nx, the treatment changed to a lower dose of 5fu, but on an every day basis. This he felt was more aggressive. and he thought I could handle it.
    Body is giving the rest signal right now actually, so I will listen.

    FH
  • snommintj
    snommintj Member Posts: 601

    Not letting go!
    The first thought was to put me on FolFox for 46 hours straight every other week.

    When the Esophagus came back as a T1, Nx, the treatment changed to a lower dose of 5fu, but on an every day basis. This he felt was more aggressive. and he thought I could handle it.
    Body is giving the rest signal right now actually, so I will listen.

    FH

    hardcore
    Man that treatment is hardcore. Goodluck. My body actually developed an internal clock that made me dry heave every two minutes right before the pump actuated. I was happy to get that thing off after a few days. You are the man.
  • Shayenne
    Shayenne Member Posts: 2,342
    snommintj said:

    hardcore
    Man that treatment is hardcore. Goodluck. My body actually developed an internal clock that made me dry heave every two minutes right before the pump actuated. I was happy to get that thing off after a few days. You are the man.

    Wow!
    Good Luck with having that chemo everyday for 5 weeks, you're the first person I have seen on here that has to do this, I think I'd be really scared being hooked up to it all the time, but then again, I'd do anything to beat the crap out of this cancer as well!! I usually go every other week, on Wednesday, and hooked up till Fridays, when the home health nurse comes and pulls me off it.
  • Fernando H
    Fernando H Member Posts: 30
    snommintj said:

    hardcore
    Man that treatment is hardcore. Goodluck. My body actually developed an internal clock that made me dry heave every two minutes right before the pump actuated. I was happy to get that thing off after a few days. You are the man.

    Home now, all is normal, sleepyness is gone
    Well today's session went well. I don't feel sick at all. I hear it may be a week until the accumulation of toxicity is built up. Bring it on. Yes it is rather aggressive, but I've agreed with the doctors to take it aggressively to nail both cancers at the same time with the big guns as long as I can handle it. Day one: so far, so good. 27 more to go!
    Git 'er done!
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Home now, all is normal, sleepyness is gone
    Well today's session went well. I don't feel sick at all. I hear it may be a week until the accumulation of toxicity is built up. Bring it on. Yes it is rather aggressive, but I've agreed with the doctors to take it aggressively to nail both cancers at the same time with the big guns as long as I can handle it. Day one: so far, so good. 27 more to go!
    Git 'er done!

    Awwwwright!
    You go, boy!! That is a heck of an aggressive plan... but that's great! I'm a firm believer of going after this monster full force with both barrels smokin' Whatever ammunition they can throw at you, all the better! If, for any reason your body decides "Enough's enough!" then fine... they can always pull back. But as long as your body is tolerating it, then tell that monster who's boss :)

    I was one of those who was not badly affected by the 5FU. I did not care for the Oxy at all... that was the nasty one that caused the nerve damage in my heels and the sensitivity to the cold. Turns out, down the road I have more nerve damage than just the heels but no idea if it was the oxy that did this or just chemo in general. But hey... if I have to do it all over again, I would (I wouldn't be happy about it, but I certainly would do it!)

    Keep up the attitude you have and you will do just fine!!

    Welcome to the club :):)

    Huggggggs,

    Cheryl
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi
    Hey,Fernando.

    I'm sorry about all you're going through right now, but you sound like the kind of person who will tell cancer to get lost! I look forward to hearing about your progress.

    *hugs*
    Gail
  • Fernando H
    Fernando H Member Posts: 30
    tootsie1 said:

    Hi
    Hey,Fernando.

    I'm sorry about all you're going through right now, but you sound like the kind of person who will tell cancer to get lost! I look forward to hearing about your progress.

    *hugs*
    Gail

    I plan on losing cancer myself, can't rely on it to do it for me
    Cheryl,
    Cant say I am happy to hear about nerve loss, but that will make me less "nervous", no?

    Anyway, so be it.

    Gail, this a great pivotal point in my life. What I am going through is alot of discovery of the subject at hand and having a different view of everything else in life.

    I plan to document my experience here. Actually would be a good way to have friends read everything and be up to speed rather than having the same conversation 9 times a day. I would never get anything done and I've actually got a new job that has been supportive, but I've got to produce throughout this ordeal.

    I'm not going anywhere... too many bills to pay! (ha ha ha)
  • CherylHutch
    CherylHutch Member Posts: 1,375

    I plan on losing cancer myself, can't rely on it to do it for me
    Cheryl,
    Cant say I am happy to hear about nerve loss, but that will make me less "nervous", no?

    Anyway, so be it.

    Gail, this a great pivotal point in my life. What I am going through is alot of discovery of the subject at hand and having a different view of everything else in life.

    I plan to document my experience here. Actually would be a good way to have friends read everything and be up to speed rather than having the same conversation 9 times a day. I would never get anything done and I've actually got a new job that has been supportive, but I've got to produce throughout this ordeal.

    I'm not going anywhere... too many bills to pay! (ha ha ha)

    Hehehe
    Well, now that you mention it, I think I am less nervous than when this journey began .

    But, in all seriousness, not everyone gets the nerve damage. It's actually quite amazing how we all really are unique individuals and because of that, we all have unique reactions to the various surgeries, drugs, procedures, etc. Oh sure, there are some things where we all jump up and down and say, "Hey, that happened to me too!" but then we find we all get it to varying degrees, so again, no two people get the same thing.

    The more you read the various threads here, the more you will see/read the various things people face or go through. It's always great to have a bit of a heads up that this MIGHT happen, but keep in mind it may be a "might" and you may have a totally different experience.

    And, for all the "Oh yuck, this really sucks!" kind of days, there are just as many, if not more "Hey, this is brilliant... I feel great!"

    So, I wanna be on the same train you are on... the "We'll take whatever is thrown our way, but the $()#*$) cancer is not welcome to stay with us!!" :)

    As for journaling your experience -- Bravo!!! I'm all for journaling, or in the online world.. blogging for family and friends :) You are right... with so many wanting to know how you are doing but they don't want to interrupt in case you are sleeping or resting or just don't feel like talking... you then get swamped with emails. No matter how many "group" emails you try to do, you always miss someone. So start a blog... give friends, family and relatives the blog address and they can then follow it at their convenience. If you use a place like Blogspot.com (I think they all pretty much work the same), family and friends can leave comments to your entries... so they can feel like they are up to date with what's going on and they can leave well wishes without feeling like they are interrupting.

    I much prefer the communications through a blog because I just can't type the same thing over and over again... and I really am not a phone person :)

    Huggggggs!

    Cheryl