ctb
Regular
Joined: 22 Jan 2007
Posts: 12
Location: Just outside Austin Texas
|
 Posted: Mon Jan 22, 2007 8:54 am Post subject: 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 |
|
christsake
New User
Joined: 21 Nov 2006
Posts: 6
|
| Posted: Wed Jan 24, 2007 11:49 am Post subject: Re: Introducing Myself |
|
|
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!
[b]Must-Have' Herbs/Supplements[/b]
Vegetable/fruit Juices
Esiak Tea
Chlorella
Barley Grass
Vit C500mg (calcium ascorbate)
Vit E w/ Selenium
Niacinamide B3 500mg
Zinc
Coral Calcium
MultiVit
[b]Tumour Shrink Agents[/b]
Coenzyme Q10
Mangosteen Juice
'Budwig Diet' Flaxseed Oil
Curcumin
B17 500mg tabs
Apricot Kernels
[b]AntiOxidants/ Immune Builder[/b]
Beta Glucan 100mg
AHCC (2 gm) (mushroom extr)
ALA (Alpha Lipoic Acid) 300mg
Glyco Nutrient Complex
Glutathione 250mg
[b]Liver Health Supplements[/b]
Milk Thistle 1000mg
[b]Others[/b]
Pancreatic Enzymes 2000mg
Acidophillus
Green Tea Extr Melatonin
Shark Cartilage
Gerson Programme Hippocrates Soup |
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
