luluu

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  • in reply to: Any treatment that works? Please help #27467
    luluu
    Member
    sunderwo wrote:
    Anyone have any success with Marinol? My sister is stage IV and has lost 40 pounds since April 2010. She is not responding well to chemo…in fact her PET/CT showed tumor growth. We are in the process of surgical evaluation…though it doesn’t look encouraging we still want to make sure we are doing everything we can (just like everyone else on this site). Her nutrition is so poor…even if she is able to have surgery…they wouldn’t be able to operate since she is SO malnourished.

    Sunderwo, Marinol did not work at all for my husband….we wasted so much time waiting for the Marinol to work…then finally went for the real marijuana, and no regrets!! It helped him tremendously!! Since he was not a smoker of anything his entire life….a friend would bake it into brownies!! He would have one in the car ride home from Chemo and next thing I know, he’s eating a large plate of pasta!! It was the best feeling in the world to see him eat!!!

    Good luck and prayers!!

    in reply to: Curcumin and Milk Thistle #35291
    luluu
    Member

    Judi, Don’t forget the Vitamin D!

    http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D

    Also, I agree with Kristin…..mix turmeric with olive oil and black pepper and just drink.

    in reply to: Vitamins and Chemotherapy #27392
    luluu
    Member

    Bean,

    It is extremely confusing, and depending which doctor you listen to, they will tell you something different.
    Despite the studies they claim to have, I don’t think they ought to comment or take a position on this, because they really don’t know. With many cancers, we have been listening to them for years and it’s not working.

    I’ve read a ton of information supporting the use of vitamins, herbs, etc, and many have no interaction with chemo drugs. The place you need to go for answers, is an herbalist, naturalpath, someone who actually studies this.

    I listened to my husband’s doctor too with regard to this issue….despite what I felt.

    Take a look at this study from MD Anderson about Turmeric
    http://www2.mdanderson.org/depts/oncolog/articles/07/9-sep/9-07-2.html

    One thing everyone should take, especially if fighting cancer is vitamin D. Have your level checked by your doctor and dose it accordingly.
    http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D

    In my opinion, some supplements should be taken while on chemo…mostly anti inflammatory supplements like turmeric, and no doubt vitamin D

    in reply to: Help!!! #33588
    luluu
    Member

    Hi Toni, So sorry about your Mom, I hate to hear this from others. I don’t know why these doctors don’t finish what they started even though it is in another location. If it was small enough not to show up on scans, then maybe there is hope that chemo will work after the resection.

    I know the reason they say why they abort the surgery,— because it’s in another organ, it’s risky (yeah, like cancer is not risky)…however if they would have completed the whipple on my husband, he could still be here.

    8 months after the aborted whipple, he still never got cancer in the liver despite the fact that the spots were checked at the time of surgery.

    I think something has to change, I mean “standard of care” if that’s the right term, why not continue with the surgery and then treat the body systemically.
    I heard all the reasons from several doctors but I don’t think that’s in the best interest of the patient, I think it’s in the best interest of the surgeon.

    Marion, our CC expert, how can we stop these doctors from making these decisions for the patients…it should be the patients decision.
    My husband wanted to take his change with surgery, no matter what. They cut him open for nothing.

    Sandi

    in reply to: Another new member of the club no one wants to join #31320
    luluu
    Member

    PROBIOTICS!!!!!!!!!

    The antibiotics kill all the good bacteria also which is not good for the immune system.
    You have to replace the good bacteria!!!!!!

    http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=RW-1056

    This is a good brand, start them soon and I know you’ll see a difference.

    Lulu

    in reply to: Missing My Husband #31195
    luluu
    Member

    Darla,

    Sending a hug and a little poem!

    “Every morning I would wake up and see, the most amazing man laying next to me. He’s the one I cherished and loved, a blessing sent from above. I loved him as a faithful wife should, and did everything for him I could. I would let him know everyday, that I loved him more than words can say”

    Just over 8months for me….and i still cry everyday!

    Lulu

    in reply to: Questions regarding surgery #31169
    luluu
    Member

    Lee,
    The whipple surgery is also an option for extrahepatic CC. A tumor can form is any part of the bile duct and depending on where it is will determine the course of action.
    What I didn’t realize, initially, when my husband was diagnosed is that the bile duct runs from inside the liver to the intestines, so if the tumor is inside the liver bile duct (intrahepatic), the surgical option is different then if the tumor was is the lower part of the bile duct(extrahepatic)–and that is when the whipple procedure is an option.
    The bile duct runs through the pancreas–that’s why the whipple is used for tumors in the distal bile duct and the head of the pancreas( pancreatic cancer).
    It was very confussing to me at the very beginning, I kept reading about liver transplants for CC but couldn’t understand why not for my husband until I started asking lots more questions to the doctors and insisting on clear answers.
    I carried around a note book where i wrote everything down and even jotted down questions when they popped into my head.

    Hope this helps!

    luluu
    Member

    =o) and they’re leaving a trail of melted Ice Cream.

    What I meant about the acidic body which results in acid reflux, heartburn, etc..is they are not symptoms of cancer, but it indicates an unhealthy environment in your body which breeds disease. Therefore, if you struggle for years with these conditions/symptoms, it’s likely you will be sick.

    luluu
    Member

    I think what makes a hugh difference if someone gets cancer or not is predisposition — but that doesn’t mean you will get it.

    Wake forest was, or still is, doing a study recruiting healthy people to donate blood and test it for cancer resistance(can remember the correct term) and then donate the blood, if it qualifies, to cancer patients.
    They’re saying that some people will never get cancer because of the antibodies in their blood.

    luluu
    Member

    “Our immune systems are becoming weaker and over-taxed. Even the medical profession’s first line of defense (the antibiotic) is becoming less and less effective against resistant new strains being created daily as the bacteria mutate. Since Louis Pasteur discovered the germ theory of disease that states germs are the cause of disease, time has proven him correct. But note Dr. Pasteur’s dying words: “The germ is nothing, the inner terrain is everything.”

    The inner terrain referred to in Dr. Pasteur’s statement is now being called our biological terrain and comprises our body’s digestive tract, lymph system, blood, urinary tract, interstitial and interstitial fluids. Our bodies are alkaline by design and acid by function. Maintaining proper alkalinity is essential for life, health, and vitality. Simply put – an imbalance of alkalinity creates a condition favorable to the growth of bacteria, yeast and other unwanted organisms. All leading biochemists and medical physiologists have recognized pH (or the acid-alkaline balance) as the most important aspect of a balanced and healthy body. They have long known that the maintenance of an alkaline pH in our tissues and cells is critical to cellular health. In contrast, our digestive tract (except for our normally alkaline mouth) has varying degrees of acid by design, and our urinary tract should be slightly acidic for healthy function.
    We live and die at the cellular level. All the cells (billions of them) that make up the human body are slightly alkaline, and must maintain alkalinity in order to function and remain healthy and alive. However their cellular activity creates acid and this acid is what gives the cell energy and function. As each alkaline cell performs its task of respiration, it secretes metabolic wastes, and these end products of cellular metabolism are acid in nature. Although these wastes are used for energy and function, they must not be allowed to build up. One example of this is the often painful lactic acid which is created through exercise. The body will go to great lengths to neutralize and detoxify these acids before they act as poisons in and around the cell, ultimately changing the environment of the cell. Most people and clinical practitioners believe the immune system is the body’s first line of defense, but in actuality it is not. It is very important, but more like a very sophisticated clean-up service. We must instead look at the importance of pH balance as the first and major line of defense against sickness and disease and for health and vitality.

    If we were to ask “What is killing us?”, the answer might be “ACIDOSIS”! It has been demonstrated that an acidic, anaerobic (lacking oxygen) body environment encourages the breeding of fungus, mold, bacteria, and viruses. Let’s look at an example. If we were to seal the door to our freezer and then unplug it, come back and open the door in two weeks, what would we find? Mold, bacteria, microscopic bugs. Things will be growing and multiplying. Where did they all come from? They did not sneak in – remember the door was sealed. The answer is . . . “they were always there”. It is simply that the environment changed to a more inviting and healthy one for the “critters” to live in. This can be likened to a shift in our biological terrain from a healthy oxygenated, alkaline environment to an unhealthy anaeorbic acidic environment. You see what is healthy for us is unhealthy for the body attackers and what is healthy for them is what is unhealthy for our body.

    A state of acidosis is simply the lack of oxygen and available calcium which the body uses to maintain its alkaline balance. Calcium makes up 1.6% of our body weight. It is literally the human glue that holds the body together……”

    There’s more but didn’t want you to hate me for posting all this. =0)

    luluu
    Member

    Amy, This is a great topic. I have actually been working on a survey that I hoping to contribute in some way.

    This is what I believe is the reason for my husband getting this cancer…

    1. Genetic predisposition.
    2. Environmental toxins..in his case it was gasoline, oil and grew up in a small home and mom and dad both smoked. …someone I met in my doctor’s office, her dad passed of CC, he worked in a fragrance plant…another toxin, obviously smoking.
    3. Diet and nutrition. Too much red meat, no fruits at all and very little vegetables. Lots of process foods.

    Signs his body was not healthy…..
    1. slightly high blood pressure
    2. Chronic gout
    3. Heartburn, acid reflux
    4. 30lbs overweight and carried in his gut

    Therefore, things I would like to know if some have in common are…

    1. GI cancers in family
    2. environmental exposure
    3. overweight
    4. nutrition
    5. Other issues such as heartburn, excessive stomach acid.

    I think if find some common elements maybe we can learn something.

    in reply to: Chemo help… #30485
    luluu
    Member

    Elicia, My husband usually felt bad on his off week from chemo…he would say he needs his chemo fix to feel better.
    To get food and liquid in your mom to get her strength back, give her ginger, lots of ginger. It’s natural and really, really works. Get a fresh ginger root and grate it into ice cube trays and then freeze it. Let her suck on the cubes for as long as she can tolerate it. As repeat constantly if she can. At some point when she can drink water easily and swallow pills, get her natural ginger supplements to get more of the ginger into her.
    I promise you it should help settle her stomach so she can drink and eat and hold it down.
    Good Luck!!

    Lulu

    in reply to: new and need advice #30610
    luluu
    Member

    Hi Beth, The blockage could definitely cause some of those symptons. If something is preventing the bile from flowing, it will back up into the liver and cause jaundice and color changes to the stool and urine.
    They must do a biopsy to know for sure if it is cancer.
    Why are they waiting so long to do the biopsy, it shouldn’t take that long to schedule that…i would really question the Doctor about that.
    What section of the bile duct is the tumor…is in inside the liver or outside the liver?
    There are many, many smart people on this site and I’m sure will chime in shortly.
    What hospital is he in? This cancer is so rare, you want to be sure you have a doctor experienced with this cancer. Many doctors have never seen a patient with it and you don’t want to be their first.
    Lulu

    in reply to: Gastrointestinal Conference Philadelphia, October 1 – 3 #30603
    luluu
    Member

    Karen,

    I am so sorry, I didn’t realize you also lost your husband. I haven’t been on the site regularly, I must have missed it. Its just friggen horrible, I don’t even know what to say to you–my thoughts and prayers are with you.

    Lulu

    in reply to: Gastrointestinal Conference Philadelphia, October 1 – 3 #30599
    luluu
    Member

    I am about 1 1/2 hours from Philly, I am very interested in becoming involved and would love to attend. I’m still struggling with the lose of my husband, but I desperately want to become an advocate for this cancer to honor him.

    Lu

Viewing 15 posts - 1 through 15 (of 47 total)
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