something's going on- in distress

2

Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    #22
    PhillieG said:

    Lisa
    I'm very sorry to hear of all of your troubles. I have gone through some of the bowel issues you describe and it's not fun at all. Just a comment with the Avastin that I'm sure you're aware of, IF surgery is needed for anything, they like to wait 6 weeks since Avastin has blood thinning effects.
    I do wonder if it's time to shop around for someone new. No one should be treated as you've been treated. Hopefully the Doc from SK will be better. ALL of the people I've dealt with there have been top-notch, very professional, and considerate.
    Be well...
    -phil

    Lisa
    Your current "team" is not treating you with respect or in your best interest. They have forgotten the part about "no harm to the patient". Hope you are successful in finding a new team that will remember these things.

    Waiting for your update.

    Luv,

    Wolfen
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #23
    Good
    I'm glad to see that you are going to ER. After rereading your post three times, I'm glad you decided to go there instead of waiting for your doctor's to take your situation seriously. Can't believe you called the surgeon 8 days ago and they still haven't gotten back to you. I'm fortunate that mine aren't like that. Once you get this taken care of my dear girl, you need to find you a new set of doctors, or start the ball rolling with the friends doctor, like others have said. I'm am praying for you at this moment and will continue. Please keep us posted directly or through the board members.

    Hugs! Kim
  • lesvanb
    lesvanb Member Posts: 905
    #24
    Lisa
    Oh girl...so sorry you are in so much pain...so glad you're going to the ER...and agree that waiting for your doctors to do something has been awful. I agree new ones are worth looking at. Holding you in my heart; hoping you get some relief and answers.

    love, Leslie
  • sasjourney
    sasjourney Member Posts: 395 Member
    #25
    Let us know!
    Hi Lisa,

    Please let us know how you are doing when you get a chance. Remember, I can be there in an hour. You are in my prayers.

    Hugs,
    Sara
  • pscott1
    pscott1 Member Posts: 207 Member
    #26
    Lisa, I'm so sorry you're
    Lisa, I'm so sorry you're going through this. I would get to whoever I could to speed up getting relief. Please keep us updated on your progress. You'll be in my prayers!

    Hugs,

    Pam
  • pluckey
    pluckey Member Posts: 484 Member
    #27
    Sweet Lisa-
    Sending up
    Sweet Lisa-

    Sending up prayers for reslotion on your pain and perhaps a swift kick in the AZZ of the doctors who were so dismissive.
    You are more than past your hour of need in terms of getting a serious look at the issue.

    ((HUGS)) to you Lisa

    Peggy
  • MrsJP
    MrsJP Member Posts: 157
    #28
    Lisa
    It sounds like maybe you need a second look. Have you told your naturopath? I can only imagine the pain your in, I feel so helpless in giving advise. Only you no what you can stand. I think a trip to the ER would be a good thing. A second set of eyes and maybe some pain meds. You are in my prayers.
    Love,
    Jeanette
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #29
    Lisa
    Lisa,

    I am praying that you are getting some pain relief right now!!!

    Amy
  • Nana b
    Nana b Member Posts: 3,030 Member
    #30
    mom_2_3 said:

    Lisa
    Lisa,

    I am praying that you are getting some pain relief right now!!!

    Amy

    Just got a text from Lisa.
    Just got a text from Lisa.

    She is fine, she says that she got her CT scan done, is on pain meds, and may be going home tonight. Her colonoscopy is in a couple days. She reassures us that she will be okay.


    Glad to hear! Please send her positive vibes, prayers and cyber hugs!

    Raquel
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #31
    Lisa. your drs. treatment of
    Lisa. your drs. treatment of you is unacceptable. You need to go to the er. You also need to call patient advocacy if the hosp. has one. My dr wouldn't call me, the PA would not return my calls so I called Patient advocacy. The PA returned my call within 5 minutes.
    Explain to the advocate what the problem is. You will get what you need.
    Good Luck to you, and many prayers of course.Judy
  • SisterSledge
    SisterSledge Member Posts: 332 Member
    #32
    Nana b said:

    Just got a text from Lisa.
    Just got a text from Lisa.

    She is fine, she says that she got her CT scan done, is on pain meds, and may be going home tonight. Her colonoscopy is in a couple days. She reassures us that she will be okay.


    Glad to hear! Please send her positive vibes, prayers and cyber hugs!

    Raquel

    Yay!!!
    Thank you Raquel, so glad to hear that Lisa got scanned and will be okay :)
  • Unknown
    Unknown
    #33
    jjaj133 said:

    Lisa. your drs. treatment of
    Lisa. your drs. treatment of you is unacceptable. You need to go to the er. You also need to call patient advocacy if the hosp. has one. My dr wouldn't call me, the PA would not return my calls so I called Patient advocacy. The PA returned my call within 5 minutes.
    Explain to the advocate what the problem is. You will get what you need.
    Good Luck to you, and many prayers of course.Judy

    This comment has been removed by the Moderator
  • luvmum
    luvmum Member Posts: 457 Member
    #34
    Dear Lisa
    I'm so sorry to hear that you are in pain and the medical team is not helping you that much. I'm glad to hear from Raquel that you made the move and went to ER. Most importantly you are feeling OK.

    I will pray to God to heal you and for a positive PET/CT scan.

    Even though I do not come to the board very often recently, you are in my prayer and I think of you often.
    Take very good care,
    Dora (hugs)
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #35
    luvmum said:

    Dear Lisa
    I'm so sorry to hear that you are in pain and the medical team is not helping you that much. I'm glad to hear from Raquel that you made the move and went to ER. Most importantly you are feeling OK.

    I will pray to God to heal you and for a positive PET/CT scan.

    Even though I do not come to the board very often recently, you are in my prayer and I think of you often.
    Take very good care,
    Dora (hugs)

    Lisa
    I hate to see that you have been in such distrss for the last two weeks:( Glad you went to the ER and are feeling better. Keep us posted and I will pray for you :) Melissa
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #36
    Thanks Raquel
    Thanks Raquel.

    Lisa,
    You're in my prayers my friend.

    Aloha,
    Kathleen
  • geotina
    geotina Member Posts: 2,111 Member
    #37
    Lisa:
    I'm so sorry you are such distress. Hopefully the trip to the ER can get things figured out. If they need to keep you then don't fight them, just do whatever is necessary.

    Hugs - Tina
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #38
    geotina said:

    Lisa:
    I'm so sorry you are such distress. Hopefully the trip to the ER can get things figured out. If they need to keep you then don't fight them, just do whatever is necessary.

    Hugs - Tina

    Thanks Raquel!!
    I have been sooooo worried. I am so glad things are stable.

    Lisa...... I will be sending good vibes ..prayers...whatever I can to help get you thru this as easily and quickly as possible

    Love to you Girl!

    Jennie
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #39
    idlehunters said:

    Thanks Raquel!!
    I have been sooooo worried. I am so glad things are stable.

    Lisa...... I will be sending good vibes ..prayers...whatever I can to help get you thru this as easily and quickly as possible

    Love to you Girl!

    Jennie

    Thanks Raquel...keep us
    Thanks Raquel...keep us posted, thinking of you Lisa. Leena
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #40
    Thanks
    Thanks for the update. Glad she is going to be ok.

    Kim
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #41
    surgery, adding adjuvants, going beyond customary
    My personal experience has been better with the surgeons, I still haven't found the "magic" oncologist that could or would help outside their narrow confines. This doesn't mean that all surgeons are agreeable all the time. My wife and I spent substantial effort finding highly rated surgeons to go beyond common practices of doing nothing.

    Two thoughts on chemo and surgery
    1. Chemo (without Avastin) before and after surgery. Commonly the surgeons want 3 weeks fallow before surgery, 2 weeks after for more chemo. In asia there have been a series of papers where ordinary patients got another oral 5FU immunochemotherapy, up to within 3-4 hours of surgery, and did fine. Other asian papers show immunochemo through surgery or starting the day after. Immunochemo is low dose 5FU, IV or oral, cimetidine and PSK.

    We've deep into tissue and wound healing nutrients like, glutamine, IV vitamin C, glucosamine, vitamin K2 along with minerals. My wife sped out of the hospital after 2nd surgery, despite a large gash, on chemo.

    Achieving satisfactory post-op wound healing may be more problematic with US style heavy chemo.

    2. Not all "chemo" has to conflict with clotting.
    Our surgeon requested an INR value approaching 1 and a test for thromboplasmin before surgery. My wife's INR was 1.0, possibly 1.00 at surgery. We used vitamin K2 perioperatively for both surgeries at 45 mg and ca 85 mg per day respectively, and 7-15 days off blood thinners like vitamin E, aspirin and fish oil.
    -----------------------------------------------

    Chemo, Plan B
    A recent set of cytotoxicity tests, on viable tumor cells from congolmerated treated para-aortic lymph nodes, show that my wife is relatively resistant to fluorouracil, oxaliplatin, irinotecan and gemcitabine singlely and in all but one combination: GEM+OXI+5FU was listed as moderately effective. I was able to arrange some additional tests run with several uncommon adjuvants, including menaquinone, aka vitamin K3, and menaquinone-4, aka a version of vitamin K2 abbreviated as MK4. The MK4 form of vitamin K2 is used as a supplement for osteoporosis at 45 mg (45,000 mcg). MK4-K2 has been used in some places for liver cancer, also an adenocarcinoma, typically at 45 mg per day orally up to 90-135 mg, limited by nausea.

    A combination 5FU, vitamin C, and MK4/vitamin K2 was reported as the most successful test series of all for my wife's tumor cells from the second surgery. A surprise for all.

    My wife has taken a low dose oral fluorouracil prodrug containing an extra adjuvant metabolite, along with cimetidine, high doses of lipoic acid, coQ10 and IV vitamin C for over a year. She even took this chemo up to 24 hours before 2nd surgery and 24 hours after 2nd surgery, per some foreign studies across two decades. She took osteoporosis treatment levels of MK-4 once on and once off last year, now on permanently. After a chemo reduction or break last year before leucovorin was available, dx misreported as "stage III", these treatments did not stop the growth of the long enlarged para aortic cluster during the last several months before the second surgery. However, the second set of surgeons were amazed that she had previously necrosed the mesenteric invasion prior to first surgery, and silently carried a enlarged malignant para-aortic node cluster, misreported as missing or negative, for over a year after diagnosis without general metastasis.

    Although we have no further information on combinations of chemo like GEM+5FU, GOLFIG or FOLFOX with MK4/K2-lipoic-coQ10, along with the host of other nutrients, we could be forced to choose heavier combinations in the future if or when the micromets finally emerge. The big question may be MK4/K2, coQ10, lipoic acid, etc as adjuvants to which heavy chemo combination.

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