What a pessimist

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Comments

  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    Lilmiss82 said:

    Gail
    You are so sweet and kindhearted. Thank you

    Lisa
    Thank you so much for sharing the cost to see dr. Lenz. I was curious but didn't want to ask because I didn't want to sound rude or intrusive. You have made me realize that a 2 nd opinion from him is within my budget and I am one step closer to better news:)
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Lilmiss82 said:

    Lisa
    Thank you so much for sharing the cost to see dr. Lenz. I was curious but didn't want to ask because I didn't want to sound rude or intrusive. You have made me realize that a 2 nd opinion from him is within my budget and I am one step closer to better news:)

    Hey Melissa!!....
    I am stage IV..... huge tumor in colon that penetrated the colon wall...missed all nodes but that of course put it in the bloodstream. Sent 4 mets to my liver and 15 to all areas of my lungs.... put on Folfiri with avastin...6 months later....ALL GONE IN BOTH AREAS!!!... A few moths after that 1 reappeared in my lung ...it was not killed of by chemo so I had Cyberknife and zapped that sucker riht on outta there!.. I have been NED since Oct,2010 but now CEA rising and I am sure another fight is brewing... all in the LIFE.... yes LIFE of a stage IV patient...... I have been told too no surgery...WRONG...and no cure..... that don't bother me... Cancer can share my body if thats the way it HAS to be.... I just will not allow it to take over my body! Best to you!

    Jennie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hey Missy:)
    If you do go to MD Anderson and don't like what you hear, turn you wheel North on I-45 and drive 260 miles to UT Southwestern....we were just promoted to an NCI status....we're the MD Anderson or North Texas now:)

    I'll be waiting for you with a giant Texas hug!

    I don't like what your onc was telling you - at 29 you deserve someone whose going to be agressive, not passive. Palliative is not for you at this age. Keep all of your options open. i've just got to think that RFA or CyberKnife would eventually be an option for you.

    You're feisty so use that energy to your advantage. You're in the hunt so don't ever think that you're not.

    -Rocko
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member

    Hey Melissa!!....
    I am stage IV..... huge tumor in colon that penetrated the colon wall...missed all nodes but that of course put it in the bloodstream. Sent 4 mets to my liver and 15 to all areas of my lungs.... put on Folfiri with avastin...6 months later....ALL GONE IN BOTH AREAS!!!... A few moths after that 1 reappeared in my lung ...it was not killed of by chemo so I had Cyberknife and zapped that sucker riht on outta there!.. I have been NED since Oct,2010 but now CEA rising and I am sure another fight is brewing... all in the LIFE.... yes LIFE of a stage IV patient...... I have been told too no surgery...WRONG...and no cure..... that don't bother me... Cancer can share my body if thats the way it HAS to be.... I just will not allow it to take over my body! Best to you!

    Jennie

    Jennie
    I love, love, love you profile picture!:) Thanks for your story it what I need to hear. I'm beginning to wonder if I should add heavier chemo to the mix rather than wait until my Ct in June to see what the 5-Fu is doing.Never done Folfiri and honestly it scares the crap out of me:) Keep us posted on your plan for that rising CEA, I read your post but felt I didn't have any good advice to offer. I was quite puzzled by your situation. I'm rooting for you! :)Melissa
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    Sundanceh said:

    Hey Missy:)
    If you do go to MD Anderson and don't like what you hear, turn you wheel North on I-45 and drive 260 miles to UT Southwestern....we were just promoted to an NCI status....we're the MD Anderson or North Texas now:)

    I'll be waiting for you with a giant Texas hug!

    I don't like what your onc was telling you - at 29 you deserve someone whose going to be agressive, not passive. Palliative is not for you at this age. Keep all of your options open. i've just got to think that RFA or CyberKnife would eventually be an option for you.

    You're feisty so use that energy to your advantage. You're in the hunt so don't ever think that you're not.

    -Rocko

    ROCKO!!
    Thank you if I head over to Texas I will have to track you down:) And I agree I need an agressive doctor, and when I signed on to him I thought that was what I was getting. Silly me!! :) It's gonna be socal or Texas at this point. I'll keep you guys posted
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Lilmiss82 said:

    ROCKO!!
    Thank you if I head over to Texas I will have to track you down:) And I agree I need an agressive doctor, and when I signed on to him I thought that was what I was getting. Silly me!! :) It's gonna be socal or Texas at this point. I'll keep you guys posted

    Mel take a look to Jennie,s post I don't think your situation
    is very different than hers before she had such good results with chemo! So it demonstrate there is some problems of communication with your doc.
    Why don't you explain him the many success here with chemo?.
    Just cheer up, such small spots shouldn't be a big deal to you!. believe me ,this doc is telling you the opposite that most of our docs are saying , try to get this second opinion asap!.
    Just keep all the hope, I'm sure this has an easy solution.
    Hugs!.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Lilmiss82 said:

    ROCKO!!
    Thank you if I head over to Texas I will have to track you down:) And I agree I need an agressive doctor, and when I signed on to him I thought that was what I was getting. Silly me!! :) It's gonna be socal or Texas at this point. I'll keep you guys posted

    Melissa, along with everyone else
    3 confirmed and 2 maybes..... I met a guy in the center I go to that had a lung transplant and is doing fine. He was 72, although his color was pale he said he felt fine as frog hair...This center has a surgeon that does lung transplants...So my question is this...Why would anyone make that statement when transplant is available and especially to someone as young as you. Maybe there is something I missed for you not to be a candidate for a transplant if nothing else. There are always options...always....Im not blaming or blasting anyone for their protocol but when it comes to this type of event I will exhaust all options before I say ..well, ok........good for you sissy girl, I will pm you his name and place of practice...........Love and Hope to ya buzz
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Buzzard said:

    Melissa, along with everyone else
    3 confirmed and 2 maybes..... I met a guy in the center I go to that had a lung transplant and is doing fine. He was 72, although his color was pale he said he felt fine as frog hair...This center has a surgeon that does lung transplants...So my question is this...Why would anyone make that statement when transplant is available and especially to someone as young as you. Maybe there is something I missed for you not to be a candidate for a transplant if nothing else. There are always options...always....Im not blaming or blasting anyone for their protocol but when it comes to this type of event I will exhaust all options before I say ..well, ok........good for you sissy girl, I will pm you his name and place of practice...........Love and Hope to ya buzz

    Hey Melissa, just to let
    Hey Melissa, just to let you know I've been on Folfiri since Feb., so far not too bad, bit of fatigue, drippy nose. I've had the runs basically since the colon surgery,prior to starting any chemo., this has eased up a lot recently with probiotics etc., and I suppose just learning what to stay away from, no more Jalapino peppers. But, I'm working during the day, coming home, doing the mom things, making dinner, laundry, etc. If it wasn't for the friggen infusion days my life would be back on track. Damn cancer, why??? I actually have more stamina and am more active than other "healthy" people in our office. You are the second person to say Folfiri gives them the creeps, I think Gail made the same comment....you must have heard something about this regime that I don't know about yet. Now you've got me wondering!!!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    hi melissa
    sorry to read your story, i read all the replies here, seems like they have so much hope.
    maybe your onc is the glass half empty type of type. just at the hope in jennie and sundances stories. I hope you surprise the pants off your onc. tell him hope, love, peace and fellowship are free, or at least affordable here. they will be your greatest assets and you have found the place where they exist in abundance.

    is your photo of sunrise or sunset ?
    hugs,
    pete
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member

    hi melissa
    sorry to read your story, i read all the replies here, seems like they have so much hope.
    maybe your onc is the glass half empty type of type. just at the hope in jennie and sundances stories. I hope you surprise the pants off your onc. tell him hope, love, peace and fellowship are free, or at least affordable here. they will be your greatest assets and you have found the place where they exist in abundance.

    is your photo of sunrise or sunset ?
    hugs,
    pete

    Hey Pete
    That is the beautiful sunset in Puerto Vallarta, Mexico.
  • tanstaafl
    tanstaafl Member Posts: 1,303 Member
    frog march
    I had an outside surgeon's review this week. A small insurance policy turned up, so "tail" (or rump) was trying to wag the dog. It was obvious that this surgeon was looking at my wife palliatively, whereas we and our surgeons are not. I also have PET/CT + extensive blood data with medical science papers to drive my points for removal of isolated lymph nodes, to be followed immediately with anti-metastatic chemo.

    Fortunately, one of our surgeons is the hospital's head of surgery and the other is their pioneer on laproscopic techniques, so this younger surgeon knew when to "salute the flag", and sign the insurance company referral form for us.

    It is easy for the doctors to be 10 or 20 years behind on medical science. The trick is getting ahead of them, finding doctors willing to look beyond today's "standard" and coping with institutional interference/backwardness.
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    tanstaafl said:

    frog march
    I had an outside surgeon's review this week. A small insurance policy turned up, so "tail" (or rump) was trying to wag the dog. It was obvious that this surgeon was looking at my wife palliatively, whereas we and our surgeons are not. I also have PET/CT + extensive blood data with medical science papers to drive my points for removal of isolated lymph nodes, to be followed immediately with anti-metastatic chemo.

    Fortunately, one of our surgeons is the hospital's head of surgery and the other is their pioneer on laproscopic techniques, so this younger surgeon knew when to "salute the flag", and sign the insurance company referral form for us.

    It is easy for the doctors to be 10 or 20 years behind on medical science. The trick is getting ahead of them, finding doctors willing to look beyond today's "standard" and coping with institutional interference/backwardness.

    Hi tanstaafl
    "The trick is getting ahead of them, and finding doctors willing to look beyond today's "standard"."
    Couldn't have said it better!!
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    thxmiker said:

    Second Opinion
    Get a second opinion! That is my advice to everyone. (Especially any insurance that is their own hospital, they have to much self interest. As they say, It is the best insurance if you are healthy.) Check with the Wellness Community in your area. Saint John's and The John Wayne accept patients with hardship or funding issues.

    Just an idea. Cancer treatment has changed much over the last 10 years and quite a bit in the last 4 years!

    My prayers and thoughts are with you to find the best treatment available.
    Best Always, mike

    Hi Mike,
    Thank you for those recommendations. I will definately look into those ideas. You made me laugh when you wrote "As they say, It is the best insurance if you are healthy." :)-Melissa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Lilmiss82 said:

    Hi tanstaafl
    "The trick is getting ahead of them, and finding doctors willing to look beyond today's "standard"."
    Couldn't have said it better!!

    maybe you need an exceptional surgeon for an exceptional patient
    my surgeon darren gold fits that description.
    his peers may think of him as a maverick, I think of him as a damm fine POM who has got the true aussie spirit of innovation and excellence.

    then this is just one paients opinion,
    but i do have the utmost faith and trust in him

    hugs,
    pete
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Melissa
    You have the right attitude; go get 'em tiger!
  • crazylady
    crazylady Member Posts: 543 Member
    Buzzard said:

    Melissa, along with everyone else
    3 confirmed and 2 maybes..... I met a guy in the center I go to that had a lung transplant and is doing fine. He was 72, although his color was pale he said he felt fine as frog hair...This center has a surgeon that does lung transplants...So my question is this...Why would anyone make that statement when transplant is available and especially to someone as young as you. Maybe there is something I missed for you not to be a candidate for a transplant if nothing else. There are always options...always....Im not blaming or blasting anyone for their protocol but when it comes to this type of event I will exhaust all options before I say ..well, ok........good for you sissy girl, I will pm you his name and place of practice...........Love and Hope to ya buzz

    lung transplant
    Hi Buzz,
    I am interested in any information you have about someone having a lung transplant for cancer. I just asked my oncologist a couple of weeks ago about this possibility, but he didn't seem to think it was possible. He said that it would be difficult to find lungs and also that the anti-rejection medication could cause cancer to flourish if there were any microscopic cells left in my body.
    If you have any information you can share I would appreciate it.
    Thank You,
    Jamie
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    AnneCan said:

    Melissa
    You have the right attitude; go get 'em tiger!

    Hey Melissa, you say your
    Hey Melissa, you say your on 5FU is that oral chemo.....or do you have to go in for infusions?? If it's oral do you still have to go in for weekly blood work etc....thanks Leena
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    I have kaiser also. Getting
    I have kaiser also. Getting a 2nd opinion from another Kaiser doctor, is not a true 2nd opinion. They are following the Kaiser Doctrine. Which is save money at all costs.

    1. Get a 2nd opinion rite away, find out what there protocol would be.
    2.. Email your Doctor with their suggested treatment.
    3. Contact Patient Advocate at Kaiser

    You will see things change very quickly, when you are fully armed. Never let your guard down at Kaiser, do the research and you tell them what u want.

    Best regards

    Carrol