A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 12

Thread: Introducing Myself

  1. #1
    Regular User
    Join Date
    Jan 2007
    Posts
    12

    Introducing Myself

    Hello Everyone!

    My name is Chris. I am a 41 y/o male. I have been very healthy all of my life. At 20 my appendix burst and I underwent life-saving surgery to clean up the mess. I decided then that I was going to do everything I could to keep my body healthy. I started a vegetarian diet, eating as much organic produce as I could find (and afford), and taking supplements and herbs to keep my immune system in top gear. I'm not athletic, but I do love to walk and hike, swim, and garden. I've always had rewarding careers, but they were also very stressful. Now I'm self-employed and working from home with my partner at a leisurely pace.

    In June I had surgery to remove a suspicious lump just outside of (but adjacent to) my colon that was discovered during a colonoscopy. The tumor turned out to be a very rare type of sarcoma called desmoplastic small round cell tumor (DSRCT). DSRCT is a pediatric sarcoma that typically manifests in young boys (there have only been a handful of cases at my age, and there are only about 500 diagnosed cases world wide--very, very rare, indeed!). It is a high grade tumor that mets easily throughout the abdomen. The 5 year survival rate is in the single digits. Luckily, my tumor was discovered accidentally and while it was still very small--<2 cm, clean margins of the resection, no lymph node involvement, and no mets. Subsequent CT scans to my torso, MRI to my brain, and ultrasound to my groin have all come back clear. Now I know why I never won any money playing the lotto--I saved all of my luck for this event in my life!

    My local oncologist had never heard of DSRCT until I came along, but wanted to treat me as if I had small cell lung cancer. This didn't sound right to me, so I asked for a second opinion. I got in to MD Anderson's Sarcoma Unit in August. Dr. Steinert suggested 6 three-week cycles of the P6 protocol (very high doses of Ifosfomide, Doxorubucin, Vincristine and Mesna). She called the chemo protocol "nuclear." At first chemo didn't fit with my lifestyle. There had to be other options. I was given an 80% of cure with chemo, and less than 20% survival without it (although they agreed that they had never seen a DSRCT patient present as I did with no evidence of disease/NED). So, with fear guiding me now, I had a portacath installed and started chemo in October.

    The first two days of the chemo were fine, and I was thinking that maybe my constitution was high enough that I would get through it without difficulty. Boy was I wrong. On day three I crashed! I had to be wheeled into the treatment room, I was vomiting, constipated, miserable. I finished the chemo administration and had two weeks to bounce back before cycle 2 was to start. These two weeks (all in a blur) were horrible. My hair fell out long before they thought it would. I was so exhausted I couldn't get around the houe without help. My blood counts went to zero, so everyone donned a surgical mask and all of my food had to be cooked (going from a nearly all raw vegetarian diet to one of cooked meals didn't help the situation at all).

    On the day that cycle 2 was to start, my white cell counts were back to normal (I attribute this to my use of coriolus versicolor mushroom therapy), but my red counts were still way below normal. I was still very weak and slept a lot. I spoke to my partner and my mother and my intuition kicked in. I realized that the cure could just as easily kill me. I forgot that I had been afforded a unique opportunity to try something different. Even though the statistics were against me, I was unique in the DSRCT world. I had to choose a different path to follow. So I quit chemo.

    At my next appointment, my oncologist didn't belate the point, but in fact, told me that more than half of the patients on the P6 protocol have to be hospitalized for a great portion of the protocol due to infections, and the need for constant transfusions. He said there was a very fine line between killing any possible residual cancer cells, and killing me with the chemo.

    I met with the nutritional oncologist (who initially recommended the c.v.) and we discussed several other complimentary and alternative medicine (CAM) therapies. He also turned me on to PubMed. I always have been a very good researcher (I've raised several million dollars in grants for the projects I've been involved in during my life), so I put these skills to use to find the best, most potent, most diverse, and... this is important... most scientifically-proven to be active against cancer natural substances I could find. I researched scores of web sites looking for therapies, and then I would go back to PubMed to do a search on the science behind them. Lots of them were just plain worthless. But I did find scientific evidence proving efficacy for a handful of CAM therapies--at least the pharmacokinetic (dosed substance) ones.

    So, since October, here is what I've been taking (if anyone is interested, I can share dosing information with you and provide the research that backs up why I take these):

    Immune Assist (beta-glucan therapy)
    Curcumin (with Bioperine)
    EGCG (green tea polyphenols)
    Ellagic Acid
    Bee Propolis (concentrated extract)
    Ginger Root
    Betulinic Acid (White Birch bark extract)
    Quercetin
    Arginine
    Proline
    Lysine
    Selenium
    Ester C
    Vitamin D
    Zinc
    Flax Oil (Omega 3)
    Fish Oil (Omega 3/6)
    B-Complex vitamins (with extra B-12)
    Lecithin
    Whey Protein
    Goji Juice (100% pure)

    My scans have continued to come back clean, my hair is growing back (although it's still very thin), and I feel great!

    Now for the sad news... I joined the Sarcoma Alliance bulletin board to share my story. While I did find a few who embraced me and supported me, the vast majority were outright hostile to me. Since October, every time I posted the research that I found on CAM therapies, it (and I) was attacked. I never once said that chemo and radiation don't serve a purpose and aren't valuable tools to treating cancer, I just also wanted to share some options for those of us who are NED, or who have run out of options. I don't think that anyone who is/has battled cancer should sit around waiting and doing nothing about it. But some board members were not satisfied to just post their critiques of my posts. My few supporters (as well as myself) received hideous evil emails from board members calling me/us irresponsible, misguided, and lots of other unsavory names. The story of my involvement with the Sarcoma Alliance ends with the administration barring me from posting to the board and erasing all of the information about CAM from the board. Now, all that members will see and be able to talk about are chemo and radiation therapies. The irony is that the founder of the Sarcoma Alliance herself (who passed away) was a big supporter of CAM therapies--particularly Traditional Chinese Medicine therapies to keep her immune system strong.

    In any event, I hope that I can find collaboration and friendship here on this forum. I welcome responses and the sharing of information. We all have one common enemy: cancer. Let's give it all we've got!

    Chris
    Chris
    DSRCT/NED
    Lago Vista, Texas

  2. #2
    Hi Chris

    I am glad that you have quit chemo, you're on the right track to recovery!
    Keep up with a good vegetarian diet and continue to keep away animal food if possible.
    My husband is a cancer victim.
    His was diagnosed with staged-4 cancer in Nov last year with tumors in his lungs, lymph nodes, liver and spine.
    Radiotherapy was done on his spine.

    I read about the toxic effects of chemo drugs so when we refused chemo, the doctors must have thought that we made a stupid decision.
    I have researched on alternative medicines and will like to share the protocol I designed for my husband (I have left out the dosing though)
    His health is improving day by day and like you, he will be completely free from cancer!

    Take care Chris, and God Bless You with Happiness, Peace & Great Health!

    Must-Have' Herbs/Supplements
    Vegetable/fruit Juices
    Esiak Tea
    Chlorella
    Barley Grass
    Vit C500mg (calcium ascorbate)
    Vit E w/ Selenium
    Niacinamide B3 500mg
    Zinc
    Coral Calcium
    MultiVit


    Tumour Shrink Agents
    Coenzyme Q10
    Mangosteen Juice
    'Budwig Diet' Flaxseed Oil
    Curcumin
    B17 500mg tabs
    Apricot Kernels

    AntiOxidants/ Immune Builder
    Beta Glucan 100mg
    AHCC (2 gm) (mushroom extr)
    ALA (Alpha Lipoic Acid) 300mg
    Glyco Nutrient Complex
    Glutathione 250mg

    Liver Health Supplements
    Milk Thistle 1000mg

    Others
    Pancreatic Enzymes 2000mg
    Acidophillus
    Green Tea Extr Melatonin
    Shark Cartilage


    Gerson Programme Hippocrates Soup

  3. #3
    Regular User
    Join Date
    Jan 2007
    Posts
    12

    Tell me more...

    Looks like you've done your homework, too. You didn't mention what type of cancer your husband was diagnosed with. How long has he been on the "protocol" that you designed for him?
    Chris
    DSRCT/NED
    Lago Vista, Texas

  4. #4
    What a fantastic story. You're a true fighter who dares to forge his own path. You're in my prayers--and my list of inspirational people!
    Regards,
    Richard Day Gore
    Richard Day Gore

  5. #5
    Banned Regular User
    Join Date
    Jul 2007
    Posts
    24
    l fully support alternative cancer treatment and gerson therapy!these are the most healthy way to fight cancer!

  6. #6
    ctb,

    where did you get the Immune Assist? When I google for it, there are a couple of sites that sell it. Thanks.

  7. #7
    Vikas, the last time ctb and everyone else other that Richard posted was 2007. Richard's last post was in 2008. I do hope one of them is still following this thread and will reply.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  8. #8

    Re: Introducing Myself

    Hi Chris,

    I came across your post and am wondering if you are willing to provide more details regarding your regimen.

    Thanks

  9. #9
    Newbie New User
    Join Date
    Jan 2013
    Posts
    1
    Hi Christsake
    Hope everything is fine with your husband and he is doing well. I would really appreciate an update about your husband. I just read your post and decided to post my experience.

    My younger brother was diagnosed with Desmoplastic Small Round Cell (DSRCT) a very rare type of soft tissue sarcoma at stage IV at the age of 26 in 2009. By the Grace of God he is still alive at the moment. His tumor was in pelvis and was spread to liver, spleen and around lymph nodes. As his liver was affected, it was not functionally properly. My brother lost a lot of weight and his skin color started to turn yellow. His chemo was started immediately. I read a lot research about this cancer, conventional treatments and survival rates etc., and was very discouraged. So I looked around the world for any alternative treatment method available.

    After 6 cycles of tough chemo, the tumor has very marginal effect. We noticed, if this continue on he wouldn’t survive much longer. During the conventional treatment time I looked around the world for available alternative treatments. Lastly, we took my brother to China where he was treated with chemo + High-intensity focused ultrasound (HIFU) but it wasn’t proving beneficial. The main problem was saving the liver before it was gone. So the doctors performed a procedure call “Percutaneous Ethanol (Alcohol) Injection” + HIFU + Brachytherapy, which proved very beneficial as it managed to clear the tumor from the liver, spleen, and around lymph nodes. This gave my brother 4 years pain free life.
    For the tumor in pelvis, chemo + HIFU were ineffective. The tumor was still growing. So, nearly 5 months ago the doctor performed an experimental procedure called “CIK immunotherapy”. The procedure involved Allogeneic stem cell Transplant, where firstly taking a sample of brother’s stem cell then performing a high dose chemo to eliminate the my brother body’s stem cells and killing the immune system. Then implanting stem cells taken from my brother with matching donors stems cells along with cancer killing cells, which in theory would kill the cancer off. This involves many cycles of treatment with an interval of 1 – 3 months. But in my brother’s case after 1x cycle of “CIK immunotherapy” the side effects of Allogeneic stem cell Transplant effected my brother’s stamina and rendered his immune system very weak. So the doctor’s didn’t perform the 2nd cycle and stopped the treatment.

    Presently, my brother is not in any pain but feeling the side effects of stem cell transplant which are low stamina and loss of appetite. His tumor is still growing and we don’t want any more chemo. At the moment we are consulting nutritionist for utilising herbal cancer treatment and looking for some other treatment for my brother’s condition. I have read about Gene therapy radiotherapy (GTRT) in China and also came across burzynski clinic in USA and his Antineoplastons treatment. I am in the process of contacting the hospitals for the treatment suitability. Both of these treatments proving very expensive.

    Got positive response from China about Gene therapy radiotherapy (GTRT) that it would have great chances of success for my brother’s condition but no guarantees. Furthermore, it would cost us about US $ 40,000 per MONTH!!!..... and treatment could take at least 5 months, depending upon the tumor response might take longer, whereas I have read that burzynski clinic in USA would cost us $15000 initially for the first month and $5000 every month for a minimum of 1 year

    Up till now we have spent around US.$160,000+ on my brother’s treatment in the last 4 years in China, which has depleted all of our savings. Now we are arranging finances to see if we can even afford to save my brother’s life. We are praying if any organisation or anyone would sponsor my brother’s treatment.

    If anyone had any experience of Gene therapy radiotherapy (GTRT) in China or burzynski clinic and their Antineoplastons for the treatment for soft tissue sarcoma or any other treatment that has proven really successful in treating soft tissue sarcoma please post your experience here. So that others can benefit.

  10. #10
    Newbie New User
    Join Date
    Jan 2019
    Posts
    2
    Hi Chris,

    My son has DSRCT and was diagnosed almost two years ago. He is now 28 and was 26 at diagnosis. He has had two surgeries, one in MD Anderson to remove the 777 tumors and one this last October at Sloan Kettering to try to correct all the damage the full abdomen radiation did to his intestines. Also in October the scan showed the cancer has come back. He just started chemo again 3 weeks ago. The doctors were trying to see if his digestive issues would improve before they put this chemo on the poor guy. I want to try supplements to help him but can i do it while he's on chemo? Any advice would be appreciated. This mom's heart is broken.

 

Similar Threads

  1. Introducing myself
    By feather in forum Brain Tumors Forum
    Replies: 2
    Last Post: 06-14-2009, 11:20 PM
  2. Introducing myself
    By zicka in forum Lung Cancer Forum
    Replies: 17
    Last Post: 05-12-2009, 12:07 AM
  3. introducing myself
    By daughterofeve in forum Coping and Support
    Replies: 2
    Last Post: 01-30-2007, 08:54 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •