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edj2001
Moderator
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 225 |
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Posted: Thu May 15th, 2008 07:20 |
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Sounds like the “MP team Nobel” did a great job in Karolinska!!!  It must be one of the big reasons for the surge in interest on the web site. Hope the MP board can find a way to continue the amazing work being done. I saw today that Medco statistics show that 51% of the insured American population is taking at least one prescription drug for chronic illness. It doesn’t look like the benefits of 50+ years of supplementing with vitamin D are any where to be found.  The biggest increase is in prescription usage by children. I hope the MP reaches “critical mass” ASAP to stop this madness. Referrals are the best form of advertisement.
The BIG news is my bladder scan last week was negative for cancer. 
I had surgery to remove a tumor in January 2007. Surgery was again necessary to remove two additional tumors in June 2007. However, since then, I have been cancer free as determined visually with scans every three months and a FISH chromosome assay of the bladder wash last December. The good news about the FISH assay is that it would have tested positive if cancer was present in any of the other components of the urinary tract system, e.g. kidneys, prostrate, & plumbing.
I elected not to use the conventional BCG or chemo treatments and depended on the MP to activate the VDR and gain a healthy immune system to eliminate bacterial intracellular infection, and the resulting inflammation, and fight the cancer.
After the research I did on conventional treatments I much prefer a healthy immune system to achieve good health. The BCG decision was a “no-brainer” because using TB bacteria doesn’t make any sense! Chemo was also an easy decision once I determined the side effects including damage to the immune system, loss of cognitive ability, and short term survival statistics probably due to the compromised immune function.
Thanks again to Dr. Marshall and the moderators to help me walk through the decision making process of avoiding conventional therapies.
I completed 7 credit hours of Biotechnology at Collin College last week and maintained my 4.0 GPA. My class presentation/report was based on VDR homeostasis. I mention that for three reasons: first, to be able to say I know what the acronym FISH stands for and what it does; two, to show my brain fog is getting better; and three, to brag a little, not bad for an old dog competing with the 20 year old genius lab partner.
My last series of blood tests all showed in the normal range except for BUN which was 30 mg/dL (7-25), and low Lymphocytes 551 cells/mL (850-3900. I expect my kidneys are doing their job.
All in all, things continue to slowly get better thanks to the MP.
Moderator add:
Gene: numerous improvements
edj2001/ Gene: Everything is going the way MP said it would
Last edited on Thu May 15th, 2008 12:58 by edj2001
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| propafenone Armour proscar Guaifensin | 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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expate
Member in Phase 3
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Posted: Sat May 17th, 2008 21:21 |
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Thanks for posting in the Alumni Forum. It inspires and encourages those of us who are in the public part of the site to see how you continue to progress after moving on.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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edj2001
Moderator
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 225 |
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Posted: Wed Sep 10th, 2008 03:32 |
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I am relieved to say my latest bladder scan was negative for any signs of cancer tumors.
I am still dealing with a productive cough, fatigue, asthenia, tinnitus, and left flank discomfort which is a new symptom. Many other symptoms are resolved.
A recent blood assay showed high potassium so I took a look at my diet and found I was eating a lot of high potassium foods. Some of which were seasonal fruits from Costco so you know it was in "high quantity". Also turns out chocolate is a high potassium food.
I noted from the MP ABC of FAQ that a diuretic can be used that allows for depletion of potassium.
After two weeks watching my diet, taking this diuretic, increasing benicar to every 4 hours, hydrating, adding some salt to increase BP, and reducing the abx dose, my potassium number was a comfortable 4.3 (3.5 - 5.3 mmol/L).The highest previous number was 6.3. The flank pain is almost gone now.
My new doc panicked when she saw the 6.3 number and insisted that I stop the benicar immediately for fear of stroke. I argued that I have been on benicar 2.5 years and never had a potassium reading over 5.3 so something else had changed not the benicar. In fact, I told her that benicar is organ protective and I was planning to start taking it every 4 hours which I did.
However, it was necessary for me to acknowledge that I was acting on my own decision and she was officially warning me to stop benicar. I suppose it was a legal precaution on her part and I told her I understood her position and appreciated that she would continue to prescribe the meds for me under the circumstances.
Soooo, it is good to see the new numbers and things have settled down. 
Thanks to the ARF, Dr. Marshall, Meg, Barb, and all the other volunteers who have devoted so much to make this possible. You are the greatest!!!
Gene
Last edited on Wed Sep 10th, 2008 03:52 by edj2001
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| propafenone Armour proscar Guaifensin | 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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Aunt Diana
Moderator
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Posted: Wed Sep 10th, 2008 12:43 |
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| What great news!! Thanks for telling us and best wishes for continued improvement.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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edj2001
Moderator
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 225 |
| Status: |
Offline
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Posted: Sat Mar 28th, 2009 10:48 |
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Well, I passed my latest bladder scan w/o any sign of cancer.  Doc said one more scan in three months and we can reduce the scans to every 6 months. That will be the 2 year mark since last surgery for tumors. We talked a little about the causes of cancer and he reiterated that inflammation causes cancer.
There hasn’t been any more skin cancer although I occasionally treat suspicious damaged skin with efudex and it burns it away if it is pre-cancerous.
Most of my sarc symptoms have resolved or improved. However, I still have a productive cough that began 11 years ago when the sarc flared and I was diagnosed via lymph node biopsy. I take guaifensin to help clear lungs but usually can’t sleep more than 4 hours at a time w/o needing to get up to cough and clear lungs. What an aggravation!!! I do notice that a localized sensitive area has developed in the upper left lung and maybe this will be the bugs “last stand”. Sure will be glad when this symptom resolves. At first I worried about this being heart pain but now it is obviously lung.
I haven’t had an A. Fib attack for over a year and am reevaluating the need for the two medications I take for that problem. I am considering stopping the digixon. Then if all continues to go well, after awhile to start cutting back on the prophafone. I tried this about a year and a half ago and backed into an attack within three weeks. Hopefully this time I can get along w/o.
Hasn’t been any sign of uveitis for two years. I had surgery to remove a cataract in one eye before the MP. Doesn’t look like the other eye is getting any worse. I still have tinnitus. I need to eat salty foods and drink lots of liquid to maintain a BP of about 100/55.
I elected to use modified phase 2 when starting the MP to get to the neuro symptoms w/clindy asap as brain fog and chronic fatigue were huge problems for me. After 3 years, this area has had significant improvement. I am doing well taking classes at the local college and am able to speak publicly again, something that had become a problem in my job preceding the sarc diagnosis. The fear of going blank during a talk was an overwhelming problem at that time.
Gene
September 2009:
No sign of cancer in latest bladder scan Phew!!! Glad that is over, always stressful, ugggg Exams now extended to every 6 months.
Continue rotating ABX. Still get some fatigue and depression but much better. I increased benicar to 40 mg every 4 hours and have noticed an improvement in my productive cough and SOB. Hope this will resolve soon.
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| propafenone Armour proscar Guaifensin | 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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Toni D
Moderator
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Posted: Sat Mar 28th, 2009 14:44 |
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What a great praise report, Gene! Beautiful melody in one's ear. I believe you'll continue to do well in school and your public speaking abilities will be all you want them to be. Hang in there. We're all pulling for one another!
Feel good and be blessed.
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Mar 28th, 2009 15:11 |
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usually can’t sleep more than 4 hours at a time w/o needing to get up to cough and clear lungs
Four hours is the magic interval at which benicar starts to lose its palliative efficacy. Have you tried taking benicar more frequently to damp down the secretions?
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BARNEY
Moderator
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Posted: Sat Mar 28th, 2009 15:53 |
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Gene,
This is the most fantastic news I have had in a long time. I am so happy for your improvements, it brings tears to my eyes.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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