This Patient is taking ACEL's Onconase
Onconase clinical trial patient has input
Here is the link:
http://www.mesothel.com/profiles/douglas.htm
Canadian Boilermaker Travels to Bremerton, Washington
"Thanks to Roger Worthington's Website"
An Update -- 01/10/08
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July 28, 2001
Over the past few years I have used your web-site to gather information on the different trials and patient profiles. Here's my situation that I'd like to share with all meso-patients!!
First of all my trade is that of a construction boilermaker, working on industrial furnaces in pulp mills, oil refineries, all of which were insulated with asbestos at one time
In the fall of 1998 I was working on a project, building penstock and scroll casing, while I was there, I started to feel sluggish climbing stairs and staging, it would take me up to five minutes to get my breath back? I was 5ft 9 inches tall 210lbs, in fairly good shape as far as boilermakers go. So I went to my physician, who in turn sent me to get my lung x-rayed. The x-ray showed pleural infusion. The specialist taped my lung and removed 3 ½ liters of fluid.
Something was definitely wrong inside there. A bronchoscopy proved negative which was good news, next was on February 22, 1999 another specialist did a thoroscopy, where they go between your ribs and into your pleural to take biopsies, test results showed Mesothelioma, a form of cancer related to asbestos exposure. What the oncologist was to say next really floored the family, he said there's no Known cure for malignant mesothelioma "go home, do your paperwork you've got 3 to 6 months to live."
WOW! Talk about getting hit by a Mack Truck. After getting out of the hospital it takes awhile to figure everything out. Which avenues to go, and believe me there weren't too many. Choices included Chemotherapy, Radiation, or Radical surgery. I hadn't really decided but the third option was definitely out. As news of my health got out friends started to call wishing the best but soon a call from a firefighter we knew asked if we ever heard of Essiac Tea, What a history this herbal tea has, anyway I started on my tea then a friend phoned , saying I'm using this herbal extract called Oncolyn, he was using it for the prostate cancer he had. I did some calling around and soon I to was using the Oncolyn,I started 6 tablets a day for the first week then down to 3 a day . I went back to where I purchased the Oncolyn and told him there's something happening with my lung, he said Its the Oncolyn , at this point all I knew something was cooking?
Further to my research the immune "system" kept coming up. Low and behold another friend's wife was selling Usana products, vitamin supplements, okay, the reason these cancer "s take off is your immune system does not have the firepower to fight them, so I added vitamin essentials and pro -c, I also found out you have to have de-toxifiers, grape seed extract, garlic, vitamin E with selenium, milk thistle, and Quercetin C, All these play a huge role in your fight.
Throughout this difficult time I used visualization and visualized little angels pouring acid over my tumors, There's a lot of literature out there, and one book I found Uplifting was "Love, Medicine, & Miracles", a book by Dr. Bernie Siegal. A must read. This book reveals how people cope with there health problems the above mentioned , prayer etc. All these things play an important role in your path to healing.
At this point I'm totally Convinced the course I was on was working for me. My EX-wife and still great friend, was surfing the net and low and behold found www.mesothel.com, Thanks to Roger Worthington's website Linda was able to access information on mesothelioma and clinical trails that were taking place across the U.S. Here in Canada the resources are not available for this type of research, but a Onconase trail was taking place in Bremerton Washington. The information stated that this light form of chemotherapy killed meso cells in the lab, this study was a phase II trail so this treatment was available for a while. Anyway I was accepted into this Onconase trail on April 23, 1999. Nine weeks later on June 27, 1999 my first cat-scan revealed no tumors at all, Gone! Some scaring of calcified plaque but no tumors.
What an amazing turn of events, one cannot begin to express the emotions that goes through you, ALL I can say is thanks To many, many friends and this web-site for its information. So many of us need this kind of information because without it, it’s hard to know where to start. It's now July 28, 2001 and last Tuesday's cat-scan revealed a stable diagnosis, no change.
So there's my story, and I'm sure there are many, many more out there, so in closing to those out there, keep fighting the fight, keep a positive attitude even though at times you wish other things, give your body the necessary firepower so that your immune system operates at peak efficiency.
Good health to all.
Paul Douglas
*** POSTED JULY 31, 2001 ***
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An Update -- 03/05/02
It's only been 8 months, but I just wanted to up-date my condition to every-one out there who uses the Web-site.
It's been 8 months and 5 CT scans later and everything is stable as far as my meso is concerned. It's been a remarkable 3 years since I was diagnosed, and I hope to be giving you up-dates like this for years to come, I still take my regiment of vitamins, still on the Onconase trial, and still take my oncolyn. I know there are thousand's of us out there so if you need moral support or someone to relate to, you can reach me at: shrnedd@telus.net.
Best of health to all.
Paul Douglas
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An Update -- 10/02/02
It's been awhile but the good news is I've just had my 20th C-t scan and alls well , my condition is stable, no tumors just the same calcified plaque where the tumors used to be. The past 4 or 5 months I've had the opportunity threw your web-site and my E-mail to talk to some very fine people who's love ones have been diagnosed with this terrible disease an been able to assist them in their fight which is all of our fight to lead them where they may find some successes, their questions are many and I think when you can give direction and hope it sure makes them feel better and ultimately the same for me. I wish the very best to all meso victims and their families, this is a fight we can't lose. I can still be reached a my E-mail address and thanks again for your web-site, I'm on it almost every other day.
Best of health to all,
Paul Douglas
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An Update -- 02/26/03
This past Saturday, February 22, 03 was my 4th anniversary of sorts!! Not with-standing a few bumps on the road along the way, medical opinions out of the spectrum things are going really well, I feel good, not without the odd aches and pain one has to endure!! which in turn gets the mind process out of kilter, it's never to far away those thoughts tend to creep in once and awhile!!
When I was first diagnosed in 1999 I said to my wife I guess I'm "toast" I had forgotten I'd said that as she reminded me. Well, were still kicking up a storm so to speak!! Backin the first few days after getting out of hospital, I was gathering information as to how to begin the battle I was facing, I said to myself I've got to stop this disease in it's tracks, there's still a few loose ends to tie up here, so I set a few goals 1 being my daughter's graduation, this June it's happening not only do I get to see this I've also watched my daughter grow into a beautiful, caring and loving young adult, 2nd I said to myself what about my 50th birthday, that's down the road but definitely within reach!! It's funny sometimes, people seem to have forgotten about that day 4 years ago but that will never be lost in my mind, the fight continues, every day one must do the things that have helped me sustain my health, my vitamin regiment, the herbal tea, oncolyn and the clinical trail of onconase, which I owe to this Web-site, that test trial was the last piece of the puzzle that seemingly put me over the top??
Every day is a new day, what lies ahead only God knows I must say to all meso victims never give up hope, enjoy your families life is so precious, it feels good to wake up and greet the day and string those days into weeks, months and years as I've been so fortunate to do!! It's crispy cold today, fresh snow on the mountains. I am going to take Eddie to the dyke and enjoy the fresh air!! I can still be reached at my E-mail address for those of you who want to speak to someone that has and still fighting this terrible disease, and thank's again to Roger and all the people who help put together the valuable information this web-site provides!!
Good health to all.
Paul
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An Update -- 09/02/03
Another 6 months has passed and every-thing is fine, my last ct-scan was clearer then the previous scan go figure eh!!! As you know there are peaks and valley's with this disease. In April a scan revealed plurel infusion, so I thought here we go, on to my next iron in the fire, It looked like I was off the onconase trial but not to give up on that I went to my oncologist here in Vancouver, 60 cc's of fluid and no conclusive tumor growth visible on the ct-scan wasn't enough to be excluded from the trail. So both doctor's chatted on the phone and Bingo back on the onconase trial, I was prescribed Zithromax and then wait till the next scan to see if there indeed any growth as luck and good faith would have it no tumor growth the infusion had cleared up and every-thing is back to normal!! It seems every 2 years I run into a funk of sorts.
Last week at the clinic in Bremerton, there was three of us meso patient's sitting side by each, I was on the onconase Matt had had his lung resected, and Vern was on the Alimta- cisplatin. Needless to say we had a great conversation as to the pro's and con's of the different treatments we were using!!! So in closing I like to wish all meso people the very best and never give up hope, every-one likes a good fight now an then an this one we have to win. Roger and the rest of the team, keep up the great work your doing many kudo's to you guy's. I can still be reached at my E-mail address if any needs support in their fight?
Thanks again, Best of health to all.
Paul Douglas
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An Update -- 02/16/04
Great News!! February 10th was my 29th C-T scan and all is well. The doctor's have noticed a small amount of pleural thickening at the base of the lung but no tumor growth so no fluid.
I can't believe it's been 5 years since I was diagnosed with meso, and that fateful statement, "You've got 3 to 6 months to live". Well, with the hope and prayers of a lot of friends and this website, we have proven good things do happen all the time!! Miracles might be a little under-statement but some have said that!!
Believe me there is a lot time and dedication to help keeping your immune system running at peak efficiency to fight against those cancerous cells that want to grow out of control. I still maintain my Vitamin regiment, along with Oncolyn, Essiac tea, while also managing to stay on the Onconase trail in Bremerton Washington thanks to this Web-site. Over the past few years there have been occasions where it has been touch and go, but we have managed to weather those storms. In maintaining my health I've found the goals I set a few short years ago are coming to fruition, my 50th birthday is coming this October and now I'm making some new goals to strive for, but not to far away!!
As you and everyone who uses this Website are aware, mesothelioma is such a sneaky disease, and there are different types which do not react favorably to the forms of chemo we throw at it. So when one has some success the key is stay the course and find what works for the individual patient, and keep with it. This website enables people to aid in their struggles to get that information and put them on the right track.
One has to thank Roger Worthington and all the people associated with him for the tireless work these individuals do to help us and further be able to help ourselves in the tragic disease that invades our families lives. Once again Kudo's to all the people who devote their time and energy to this disease!! I look forward to the month's ahead where all these new grants that have been made start to show a positive result to further help all those afflicted with disease, for those who wish to talk to someone who is also fighting this unending battle, my E-mail is shrnedd@telus.net
Good health to all
Paul Douglas
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An Update -- 09/09/04
Yesterday, Sept., 8th I had my 31st Ct-scan and low and behold no change, I don't know how long I can keep this batting average at 1000, it's a challenge but I'm up to it. Come October I'll be reaching another goal that I set for myself, the big FIFTY, my sister and brother are planning a birthday bash, family and friends should be a good one!! Sometimes I sit back and wonder why I have been so fortunate while others seem to be not so lucky, as I've said before if you have some success stay with it, the rewards are priceless, to wake up every day an knowing the hand I was dealt and to be able achieve the goals I set is amazing!!
I am in touch with a lot of people who use this web-site and they tell me what an inspiration I am to them and their families who have been afflicted with this disease, truly it makes me feel good and also makes me want to do what I can to help others who have my not know which way to turn!! The road blocks are there both medically and financially and it's no easy task in a life or death situation.
It also gives me great pleasure to know that Roger and every who works for him spend their time and resources to further help us find a way to eliminate mesothelioma as a life ending disease, it's not the way it was supposed to be and it looks like the politicians are warming to the idea that we have a disaster happening right in front of their eyes, I think the sight of the Twin Towers collapsing and all the asbestos floating over Down town Manhattan has woken a lot of senators up as to the magnitude of the problem asbestos will eventually pose, it's about time!!
Any how keep up the tireless work you guys and gals do for every one of us that uses the Web-site and for the families that are affected by this terrible disease!!
Thanks again, I can still be reached at my web-site for those who wish to communicate with someone who has meso, I think it's easier to relate to??
Good health too all!!
Paul Douglas
shrnedd@telus.ne
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An Update -- 01/17/05
Hoping every-one had a good a Holiday season at MARF. Since my last up-date a few things have changed, remember a few posts ago I had mentioned what a sneaky disease this meso is, well low and behold About 6 months ago I could feel this lump on the outside of my rib-cage, I didn't think to much about it as the c-t scans were saying it was stable!! After getting 4 or 5 opinions I decided on my own free will to get a biopsy and see what this thing was?? After 4 cancellations I finally went under the knife Dec. 30th., the surgeon asked me if he should biopsy it or cut it right out!! We've waited this long so take it all out. 4 days later my suspicions were confirmed, it was meso!! Little did I know what a fire storm of sorts this would turn in-to!! Everyone started freaking out, meanwhile here I was wondering where their thought process had disappeared??
Ever since I was diagnosed way back in Feb., 99 I had envisioned a plan of attack if any thing should develop along the way, well almost 6 years later here we are. Taking the "bull by the horns" so to speak, let's not jump to conclusions here, there is a progression thing in place so why don't we follow it?? After everyone had time to reflect a little bit things did not appear to be that difficult; another ct-scan showed little or no progression in lung itself, so that was good news.
So now were on to the second phase of the Onconase trial which adrimiacin is introduced as a second agent, I'm told I should tolerate it very well, I'll lose my hair but since I'm going bald any way, maybe I'll get an earring and they can call me Paul "Mr. Clean" Douglas, hopefully I'll garner a few laughs along the way!!
In the meantime I feel great a little set back like that did not cause to much concern to me it' s gone with a little radiation to clean up any cells that might be around, it's a done deal. I see no reason not to be giving more positive updates in the future and looking forward to some good news in the research that is progressing as we speak. Saying that I like to say to everyone who uses this website stay positive, life is good, Now if I can get my golf game to come around life will be real good!!
I still can be reached at shrnedd@telus.net and wishing every one a healthy new year!!
Thanks again and good health to all.
Paul Douglas
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An Update -- 06/13/05
It's been a while and just to let you know everything is real good.
Back on my previous post in January I mentioned that I was going onto the second faze of the Oncanese clinical trail, that being Adriamician with Ocanese, but low an behold a Mugascan and an Echogram showed that my heart might not able to tolerate the Adriamiacin as the valve that pumps the blood, it was working at about 50 per-cent so my oncologist didn't feel good about those results so we were taken off the trial all together. I was off treatment for 2 months still taking my Oncolyn, Essiac Tea and my vitamin regiment, as time went by I inquired about treatment from my oncolgist here in N. Vancouver B.C. and he said without a tumor marker to gauge the progress if any the Alimta Cisplatin was making and the toxic effects it has that we would have wait for tumor progression before any treatments would be administered!!
From a Doctor's stand point I guess that was the best way to proceed? But being pro-active I called Joe Johnson in Bremerton Washington for a second opinion?? It was his thought that we should go ahead with 4 regiments of the Alimta-Cisplatin and see if there was any change, our ct-scan showed it was stable from the previous ct so it was a hunch on his part and amazing enough there was a change after 2 treatments and significant change after 4 treatments. I always had this pocket of fluid in the upper lung area since day 1 but the treatment had cleared a lot of the fluid up!! So there you have it his hunch paid dividends that we didn't expect, the results needless to say were eventful. Through the treatments with the help of steroids and anti-nausea pills I never endured the sickness that comes with this treatment, a little tired for week after but nothing to stop my daily activities nor did it effect my appetite, so that was a bonus!!
As of June 7th I have been off any treatments and looking forward to a great summer and our trip to New York later this month, we;ll go back in September for a ct-scan and hopefully there will be nothing to report and move to 3 month check-ups.
Till my next up-date I hope and pray for all those affected families that have to endure this terrible disease that good things do happen and never give up hope, If anyone wishes to communicate with me via E-mail it is still the same and look forward to helping anyone who has trouble getting through the hoops that the medical system seems to put us through, more turmoil then we are already!! So in closing again thanks to Marf and every one else for the hard work that will eventually lead us to a cure.
Good health to all,
Paul Douglas
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An Update -- 09/30/05
Just to let every-one know my Sept 18th ct-scan was clear, it's quite amazing because I've been off treatment for over 3 and 1/2 months. I went 2 months without doing any thing before but this the longest so far. My oncologist was very ecstatic as was my family, the nurses and all my friends and relatives. I guess the good lord is watching out for me and my mother must be kicking him in the pants saying watch out for this guy!! It never fails before a ct-scan there are all these aches and pains, my wife says your imaging them , but in my mind they are there?? Once the scan is done I wait for Dr. Cook's assessment and low an behold your clear all the symptoms slowly fade away!! The mind truly is a deceptive organ. Thanks for the invitation to the 2nd annual symposium, I don't know if I'll make it, the New York trip was fantastic, the people there are so friendly, always willing to help the lost tourist!! Yankee Stadium is a baseball fans dream, the Yanks lost both games but who cares I was there I got pictures I drank the 8 dollar and 50 cent beer what more could you ask for?? We enjoyed the shows, I'd go back in a heart beat but all this put a hit in the pocket book, but don't count me out just yet, it's Oct. 1st and there's still time. I'll close for now and hoping to see some results on the on going research to this disease yield some dividends in the near future!!
The best of health to all.
Paul Douglas
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An Update -- 01/04/06
Happy New Year to you and every one at MARF (www.marf.org). In past year things have gone really well for me health wise, as I mentioned in my last up-date, I've been able to put 3 ct-scans together with a stable diagnosis, I was in a dilemma whether to get a scan before Christmas or wait till the New Year, my oncologist said I wouldn't leave to long, there I was thinking, good news bad news. SO Nov. 29th we did a scan and low and behold stable again. Once more a little pleural thickening, but other wise no change, so it made for a very Merry Christmas. I go back in 3 months for another scan, as we continue keep the mesothelioma at bay!! This February will be 7 years since the doctor famous words, "you've got 3 to 6 months go home and do your paper work" We kind of blew that statement out of the water, one can only hope for continued successes till more treatment options are available to people who have been afflicted with this killer disease. Also hoping to see some results on the on going research projects that have been trying to aid us in our fight!! In closing, wishing every one the very best in 06, I can't believe how fast 05 went. I can still be reached at my E-mail address Shrnedd@telus.net for those who desire some one to converse with. Good Health to All, Paul Douglas
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An Update -- 06/11/06
It's been over 5 months so I thought I'd touch base and let every-one know things are still pretty good health wise. My last ct-scan was stable so that's always great news, it keeps me away from the Alimta-cisplatin chemo which is a good thing!! June 8th was 1 year since I last had any treatment, I guess the chemo did it's job but you never know when it will sneak up on you?? I have a ct-scan on July 11th so we're a month away and I'm feeling pretty good right now, let's keep our fingers and toes crossed so our luck keeps on going.
Sharon and I just got back from Spain and Portugal, 3 weeks in the sunshine, 10 days in Spain and 8 days in the Algarves of southern Portugal. A lot of history in Spain dating back to the 11th century, truly some amazing places to see. In Portugal we spent one night in Tavira then went on to Salema, a quiet little fishing village, 6 days laying on the beach. What a great place to recharge your batteries, r&r at it's best, the seafood was fabulous, beer and wine aplenty, the whole trip there was no rain at all, but all good things come to an end, we arrived back in Vancouver, you guessed it RAIN!!
Looking at the web-site it seems we're making some progress but lets hope more resources are available for research by way of that 50 million dollar Dept of Defense budget hassle aside. We're all hoping there soon will be good news coming down the pipeline!! I still maintain my vita-min regiment with the Oncolyn, I've added ip6 to it, I watched a program where this oncologist insists his cancer patients take it, so what the heck it can only do good.
I'll leave you for now, I'll give another up-date in December, wishing good health to all.
Paul Douglas
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An Update -- 01/17/07
Happy New Year! I think 06 went faster than 05. Just would like to let everyone who uses the web-site an up-date on my health!! It's been 7 months and there is always something that creeps up on you?? Remember back Dec. 05 I had an operation to remove a tumor growing outside of my rib-cage well you guessed it, it reappeared but not in the same place it slide back up to where I had the Thoracoscopy 4 ribs higher!! Talk about being a sneaky desease, so we had radiation treatments and after 10 shots the tumor was gone!! I was really pleased with the out come to be sure. This past week I had a ct-scan and wouldn't you know it the scan showed no changes except maybe a little pleural thickening at base of the lung, after 8 years this didn't come as a big surprise I still feel good and there's no crackling in the lung so every thing is o.k. till we get another ct-scan in April. Because I've been so fortunate and maybe a little lucky so far, I got talking with Joe Johnson in Bremerton Wash. With the positive scan wouldn't it be a good idea to be pro-active and get 4 treatments of Alimta-cisplatin just to be sure?? He agreed that would be a great idea, the thought being you don't have to wait for a reoccurance and keep a lid on it before it does come back!! 20 months since I last had Alimta-cisplatin all the accumalative effects would have passed on as time had gone by, so there's where we stand to-day, looking forward to a great year in 07, got our 2nd annual golf tournament in Whistler B.C. this summer, and where planning a trip to Mexico In April we've got a lot of snow this year, even though I like the clear an cold weather I'm lacking the Vitamin D that comes with sunshine!! Hoping to see more treatment options come down the pipeline with all the research going on!! Wishing every-one a healthy 2007!!
Paul Douglas
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An Update -- 07/27/07
It's been a little over 6 months since my last correspondence so I'll bring every-one up to date.
Let me tell you it's not without any excitement what occurred down at the clinic in June, you know how I've always tried to be pro-active in fighting this disease well it almost cost me!! The first treatment of Alimta-Cisplatin went great, the second one didn't, I was sitting there and I started to itch, I looked over to the nurse and no sooner then about 15 seconds I was turning beet red, I started to lose my breath all I could do is little gasps of air. I was having an allergic reaction to the Cisplatin, before my eyes 4 nurses were on to me, they gave me a shot of effrigen, I think that was what it was called anyway things started to get better, this shot boosts your heart-rate, one nurse took my pulse and it was 184 over 114 and after a short time it started to go back to a more normal pressure, the thing about this emergency is I couldn't do anything, I just sat there and let the nurses do their thing. My daughter was with me that trip but she had gone to Sub-way to get lunch, although she's just completed her 2nd year of nursing I was happy that she didn't have to see her Dad in that state!!
So needless to say we stopped treatment for now and will have a ct-scan in September to see where were at. Thinking back both Dr. Johnson and I thought it was a great idea because back in the fall I had radiation to get rid of the tumor that had came back on my ribs we figured if there were any cells left we could blast them and be done with it. They say a cat has 9 lives and if I were a cat I think I used a few up that day!! We all have been waiting for news on the research that is on going, I sure hope and pray the scientists are closing in on some treatments that will help all us meso patients continue to at least live a some what normal life. The stress that is put on the family's is a lot to bare, in my case it's not really there but on the people I have met with this disease and what they have to go through is incredible. Like I said I'm looking forward to news coming down the pipe-line so in closing keep up the tireless work Roger and the staff plus the people at M.A.R.F. in trying to eliminate meso as a life ending disease!! Thanks again!!
Good health to all, Paul Douglas
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An Update 01/10/08
Happy New Year to you and every-one at M.A.R.F.
I just had a ct-scan Jan.8th and everything was stable. As we were reading the CTt-scan Dr Leen looked over at me an said "your not on any treatment right now are you'" no I'm not. This is truly amazing, what ever your doing keep it up. I remember a stretch where I went 18 months or so where I had no treatment so maybe I'm on another run of sorts!!
Anyhow I'll take and run, if I can stay away from the chemo all the better. I purchased a book by Bill Henderson, " Cancer Free" your guide to Gentle, Non-Toxic Healing" I would recommend that cancer patients read this book. It has some very good directives that might interest a lot of us, there's a chapter where there's 10 things you should take!! Low and behold I'm taking 6 of them, so there you have it. What works for some might not work for others!! but if you don't try how do you know?? Is it just me or is time flying right by??
Feb. 22nd will be 9 years since I was diagnosed with Meso, what a ride it's been, I've set a few more goals to reach for and hopefully I'll get there. Let's hope this year brings us more treatment options so we can live a some what normal life!! I've talked to a lot a families out there and it's really tough on the family structure. So in closing I wish the best of health to every-one at M.A.R.F. and all those who use and read this web-site. Have a great 08 and I'll give everyone an update in 6 months!! Bye for now, I still can be reached at my web-site Paul Douglas
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