My friend has AML Leukemia, plus a rare genetic code variant that makes her body resistant to all chemo. HELP!
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Hi,\n\nI know quite a bit about AML, as my 8 year old daughter Alex was diagnosed with it at the age of 10 months. I'll need some info if I'm going to be able to help you:\n\n1) How old is your friend?\n2) What is her AML subtype?\n3) What treatments have been tried so far?\n4) Do you know if she is CD33 positive?\n5) Do you know if she is FLT3 positive?\n6) Do you know if she is Philadelphia chromosome positive?\n7) What is the name of the rare genetic code variant?\n\nOnce I have that info, I should be able to at least steer you in the right direction. If you want to contact me directly, you can reach me through Alex's website at:\n\nhttp://www.alexupdate.com\n\nHope this helps.\n\n-- T
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Your best bet would be to get in touch with Neroblastoma researchers and doctors at St.Judes as they are the best hospital in the world.I spent almost 2 years straight there when my daughter was battleing a rare form of Leukemia.Called acute promyelocitic Leukemia. She's in remission after relapsign three times!
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my mother in law just went through this and just had radiation too.  her doctor said the cancer was in a fairly small area, and the radiation was just as effective and wouldn't give her the side effects of chemo, but if it came back or they found it had spread, she would have to have the chemo then.  good luck to your sister!
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there was a girl in canada that had to come to america because social medicine couldnt help her I will try to find it.\n\na six-year-old Montreal girl with a rare form of leukemia who can be cured only in a Wisconsin hospital at a cost of $350,000 -- a real case? Paradoxically for a socialized health system, the family had to appeal to public charity, a more and more common occurrence. In the first two months, the family received more than $100,000, including a single anonymous donation of $40,000. \nSource(s):\nReport of the Enquiry Commission on Health and Social Services, Government of Quebec
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There are many agencies/organizations that can help in different ways. Some are for specific cancer types and others are for cancer patients in general. The following site lists a lot of these and should lead you to one or more that can help you. http://cellscience.com/CANCharities.html\nAnother which has been helpful to me, but is not on the previous website, is http://www.cancercare.org/services.html
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I'm so sorry about your fiance's situation. You all are in my prayers.\nOne suggestion would be to contact Cancer Treatment Centers of America. They are a system of Hospitals with campuses across the country that specialize in both conventional and alternative treatments of advanced cancers that have failed conventional treatments. Their website is: http://www.cancercenter.com .\nAnother resource I would suggest would be the book, "Beating Cancer with Nutrition" by Dr. Patrick Quillin (Amazon.com link: http://www.amazon.com/Beating-Cancer-Nutrition-Patrick-Quillin/dp/096383729X/sr=8-1/qid=1164205725/ref=pd_bbs_sr_1/103-5041657-6768651?ie=UTF8&s=books)\nAlso, contact your local branch of the American Cancer Society at http://www.cancer.org. Again, my wishes go out to your fiance for a full recovery. Hope this can help.
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sorry to hear that your friend has got it. i found this site which is a story about a woman who has it. its probably worth reading becasue it kinda gives u insight to what someone with hep c thinks of ect
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Be there for her every step of the way. Its very hard going through chemo and radiation, my son has been battling cancer for the last year. The thing that helped him is his family and friends that have been there from day one, giving their love and support. Be there for her give her strength and courage. Pray, prayer is an awesome thing. Tell everyone you know to pray. Keep your faith and just give her lots of love and hope. Dont give up, I know its very hard, the worst thing for her and your family is to give up. Keep fighting cancer is beatable. Its not the end of the world there are so many cancer survivors out there. I will keep you all in my prayers, Take Care and God Bless.
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Honestly, its better you consult a cancer specialist/doctor in your area, I'm sure they have reference/contact informations. I really want to help but I don't think I can give better answers than specialist do. Sorry.\n\ngood luck\n\nLove is omnipresence, Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
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The above is not complete. Don't have time to go into details, but check out this website:\n\nhttp://www.learner.org/channel/courses/biology/textbook/cancer/index.html\n\nI suggest reading the entire chapter if you don't have time for that, I suggest the section on Tumor Biology and the treatment section
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What is leukemia?\n\nLeukemia is cancer of the blood cells. Blood cells are made by your bone marrow, which is the soft tissue in the middle of most bones. In leukemia, the bone marrow starts making too many white blood cells, and sometimes these cells don't work right. These cells keep growing when they are supposed to stop. They also grow faster than your other cells. Over time, these abnormal cells crowd out your normal white blood cells, red blood cells, and platelets. \n\nYour white blood cells help your body fight infection. Your red blood cells make sure all your body parts have the oxygen they need. Your platelets keep you from bleeding too much. When the leukemia cells crowd out your normal cells, your blood cannot do its job. You may bleed or bruise easily, get sick more often, and feel very tired. \n\nAre there different types of leukemia?\n\nThere are four main types of leukemia. Acute leukemia gets worse very quickly. People with acute leukemia often feel sick right away. Chronic leukemia gets worse slowly, and you may not have any symptoms until later on in the illness. Those two kinds of leukemia are divided according to which kind of white blood cells are involved, lymphocytes or myelocytes.\n\nAcute lymphoblastic leukemia (ALL). ALL is the most common leukemia in children. Adults also get it. \nAcute myelogenous leukemia (AML). AML affects both children and adults. \nChronic lymphocytic leukemia (CLL). CLL is the most common leukemia in adults, especially older adults. Children almost never get it. It mostly affects people who are older than 55. \nChronic myelogenous leukemia (CML). CML occurs mostly in adults. \nWhat causes leukemia?\n\nExperts do not know what causes leukemia. They do not know why some people get it and others do not. It is likely that the different types of leukemia have different causes.\n\nResearch has shown that some people may be more likely to get leukemia. A risk factor is anything that raises your chance of getting a disease. Risk factors for leukemia include chemotherapy treatment, being exposed to large amounts of radiation or some chemicals in the workplace, and smoking and tobacco use.\n\nMost people who get leukemia do not have any risk factors.\n\nWhat are the symptoms?\n\nSymptoms may include:\n\nFevers and night sweats. \nFrequent infections. \nWeakness and fatigue. \nHeadaches. \nBruising of the skin and bleeding from the gums or rectum. \nJoint pain. \nSwelling in the belly or pain on the left side of the belly or in the left shoulder from a swollen spleen. \nSwollen lymph nodes in the armpit, neck, or groin. \nDecreased appetite and weight loss because you feel full and don't want to eat. \nThe chronic forms of leukemia often cause no symptoms at first.\n\nHow is leukemia diagnosed?\n\nIf your doctor thinks you might have leukemia, he or she will ask questions about your past and present symptoms, do a physical exam, and order blood tests.\n\nIf your blood tests are not normal, a test of cells from inside your bone marrow, called a bone marrow biopsy, is usually needed to diagnose leukemia.\n\nHow is it treated?\n\nTreatment depends on what kind of leukemia you have and how far along it is. Treatment can range from watchful waiting to a bone marrow transplant. Usually it includes chemotherapy and sometimes radiation treatments.\n\nFrequently Asked Questions\n\nLearning about leukemia: \n What is leukemia? \nWhat causes leukemia? \nHow can I prevent leukemia? \nWhat are the symptoms of leukemia? \nWhat increases my chances of getting leukemia? \nHow common is leukemia? \nWhat happens in leukemia? \n \nBeing diagnosed: \n How will my doctor diagnose leukemia? \nWhat is a bone marrow aspiration and biopsy? \n \nGetting treatment: \n How is leukemia treated? \nWhat type of medications will I need to take? \nWill I have to have radiation therapy? \nWhat is a bone marrow transplant? \n \nOngoing concerns: \n When should I call my doctor? \n \nLiving with leukemia: \n Wha
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Hi Michelle,\n\nMy 8 year old daughter Alex was diagnosed with AML when she was 10 months old and was in active treatment for over 5 years, so I know exactly what you're going through. There are several organizations that help pediatric cancer families. In each case it's best to have your social worker at the hospital contact them and arrange for assistance.\n\n\nHere are the ones that helped us the most:\n\n1) National Children's Cancer Society\nhttp://www.nationalchildrenscancersociety.com\nWe had to relocate from the west coast to Duke (for Alex's 2 Cord Blood Transplants) 3 times over 3 years for a total of 10 months. NCCS helped pay our rent in North Carolina twice and also paid one month of our mortgage. They also helped out with meal money.\n\n2) The Leukemia & Lymphoma Society of America\nhttp://www.leukemia.org\nLLS will pay up to $500 in transportation and chemotherapy expenses per year.\n\n3) Candlelighters\nhttp://www.candlelighters.org\nCandlelighters paid part of our mortgage one month and later helped to pay for additional schooling for Alex, so she could catch up with her class.\n\n4) Corporate Angel Network\nhttp://www.corpangelnetwork.org\nIf you have to fly anywhere for treatment, Corporate Angel Network will try to find you a seat on a corporate jet going to that location. Alex was neutropenic (no immune system) a lot during her 5 years of treatment, but we still had to fly back and forth between Seattle and North Carolina several times. Without Corporate Angel Network's help, I doubt Alex would have been able to fly without getting seriously ill.\n\n\nThere are also a couple charities that will help by providing you and your family with a chance to have some fun:\n\nMake a Wish\nhttp://www.wish.org\nMake a Wish will grant one wish to your child. They're usually pretty open to whatever the child wants, although they have been known to turn down more extravagant requests. The only caveat is that the child has to be able to specifically ask for the wish themselves. Alex was only 3 at the time of her wish, so we went to DisneyWorld. She didn't really want too much else at that age!\n\nStarlight * Starbright\nhttp://www.starlight.org\nStarlight * Starbright picks up where Make a Wish leaves off. They provide theater tickets, tickets to the zoo, parties, toys, etc... When Alex was going through treatment they arranged for her to see Beauty & the Beast, Seussical, The Wiggles (the horror!), The Lion King and more... At the time we were struggling financially, so Starlight * Starbright was really a godsend.\n\n\nFinally, depending on where you live there may also be local or regional charities that will help you out. Your social worker at the hospital should know about them, but if you live in the Seattle area I have a few suggestions.\n\nHope this helps. If you need to, you can contact me through Alex's website at http://www.alexupdate.com\n\nTake care.\n\n-- Todd \n\nP.S. Now that we're doing better financially we donate to each of the charities that I listed above using some of the profits from our coupon site. I would encourage everyone else who can afford it to consider making a donation also. 8-)
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All of those are questions that should be directed to her surgical and chemotherapy teams. Asking questions like this on this forum will likely only leave you more anxious than before you asked the question. Get info from the experts.
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In addition to the above individuals with cancer may have cells with a different DNA sequence due to deletions, mutations, and additions.  \n\nThere is also a possibility that an individual can have mossaicism causing different cells in the body to have a different DNA sequence.  Mossaicism occurs when two embryos merge to form one in the uterus.  In most cases a majority of the cells will have one DNA a sequence, but some tissues will have a different sequence from the embryo that was 'absorbed.'
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check out\n\nwww.americancancersociety.org
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Give her all the supports you can by encouraging and giving medical attention. You have not told what cancer she is having the stage and grade of the disease so that I could have suggested the possible medication and treatments. Any way act as per the advise of your Oncologist. The treatments generally are - surgery, chemotherapy and radiation therapy. The treatment side effects are more killing than the disease itself. What to do you have to fight the disease as -\n\nCANCER IS STILL AN ENIGMA.  Best wishes for speedy recovery of your friend.-
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Talk directly with her oncologist and surgeon.  They will have staff members that work directly with insurance companies.  Ask her doctors (the more the better) to write letters to the insurance company.  Many times, all it takes is an additional request because many insurance companies automatically deny the first claim. Contact the local chapter of the American Cancer Society for advise and information on consumer advocacy groups. Contact your state insurance commissioner office also.  Check your local television, radio, and newspapers for consumer advocates or "action lines".   As a cancer patient, I know how frustrating and frightening the waiting can be.   It doesn't help when you are denied treatment because of your insurance carrier.