Dalinda's Story

7th February;2000
Guestbook
On Oct. 1st I was diagnosed with malignant mesothelioma of the pleura.
Doctors have told me that I will not live longer than a year.
The protocols offered me were so terrifying that I decided against them. I will E-mail more later
Dalinda

8th February;2000
Deidre
I was very touched by your history in the memory of your husband.
It shows so much love that I decided to write to you and let you know of my personal ordeal.
The symptoms began a few years back, maybe five. I was always tired and had pain in the chest when walking.
I'm tired right now. I'll continue later -
Dalinda

9th February.
Deidre
Thank you for your message, I really appreciate your caring.
Because I have so much to say I thought it would be more convenient to put in an attachment .
Regards,  Dalinda.

12th February;2000
Deidre
It's easier to write a letter in WordPerfect and send it as an e-mail attachment than it is to try to write my whole history as a single e-mail. Hope this gets to you OK, and that you can read it once you've downloaded it.

I was born in Argentina and emigrated to the US nearly 35 years ago. I have lived in Baltimore, Maryland ever since. I have no idea when or how I was exposed to asbestos. According to the literature it could even have been when I was still living in Argentina. But there is no history - for me or anyone in my family - of exposure to asbestos. Yet I was diagnosed in October, 1999 as having malignant pleural mesothelioma.
This diagnosis was confirmed by the Clinic I went to here in the States, and by the hospital oncology department.
These two institutions are considered the best here in the US, and are highly respected throughout the world. So, there is no doubt in my mind about the correctness of the diagnosis. After the initial diagnosis in October, I went to two more oncologists for a third and fourth opinion. Their prognoses were very similar.
Without treatment I would not survive longer than a year. With treatment, (a standard protocol of chemotherapy and radiation) I might gain an extra year.

Both of them gave no hope for a cure or even a remission. One of them, recommended a visit to Boston to one of the hospital's there, where one of the doctor's has been experimenting with new protocols. Over the last ten years he has claimed some success with survival rates.
Prior to my visit , though, I was interviewed by the head of thoracic surgery at the hospital in Bethesda, Maryland - very near Washington, DC.
This institute is also well-known throughout the world. Its primary goal is investigating and experimenting with ways to fight cancer. They are funded by US taxpayers, and is the official "top authority" in the US. This doctor is the top authority in his area, by virtue of his position at this hospital.
He said - after weighing all the pluses and minuses involving both standard treatment and clinical trials - that there is no treatment for pleural mesothelioma which will offer any more chance of survival than simply doing nothing, and trying to enjoy life as much as possible as long as possible.
His argument was that chemotherapy would do no good, and in fact, it would harm the immune system so much that death would come sooner than if nothing at all were done.

I kept my  other appointment in mid-November, 1999, with the first doctor anyway. He had discovered - as I had been warned - that his previous trials had had no significant benefits.
He was about to embark on a new phase 1 trial, which included surgery followed by a new method of using chemotherapy (up to 200-300 times the previously recommended dose, and applied hot, directly into the chest cavity and other areas involved with the tumors). I refused this treatment. My fear was that I would not survive the operation. My family concurred with my decision.

I have decided to turn to alternative medicine and to refuse any standard treatment or clinical trials. I think my decision is an informed decision. After studying articles and books, and conversing with practitioners of alternative (natural) approaches to my problem, I have decided that the most promising approach to dealing with my mesothelioma is by helping my own body deal with it as much as possible.
If anything will conquer such cancers as mine, it will be because the immune system is strong enough to eliminate the cancer cells - or at least to slow down their proliferation.

I have had two CT-Scans since I embarked on my alternative approach. The second, done on January 15, 2000, showed virtually no change from the previous one, with an actual decrease in pleural effusion. This is good news, but I remember what my oncologists have said about mesothelioma cells: sometimes they just "hibernate" for a few months; and then they resume their growth, even more rapidly than before.

I'll let you know what the next CT-Scan shows before I become too optimistic. The next scan should be in the middle or the end of March.

Mesothelioma is a cancer that takes years to get to a stage where it is actually diagnosed. And almost always, by the time it is diagnosed it's too late to do anything about it.
I believe I was exhibiting symptoms long before I actually got to the point of going to the hospital, having the thoracoscopy, and being diagnosed.

I have always experienced lung problems. And until 10 years ago I was a 3-pack a day cigarette smoker.
When I used to vacation at a beach on the Atlantic Ocean, I invariably came down with pneumonia. X-rays always showed a "spot." This spot was always noticed, and the doctor always said "We'll have to check up on that, but don't worry about it."
For the past two or three years I have been exhibiting many of the symptoms you list on your checklist - especially shortness of breath and fatigue. These early symptoms can be mistaken for so many other problems that it would be easy for doctors to gloss over them.
Unfortunately mesothelioma occurred so seldom during my "incubation period" that very few doctors were looking for it. If any doctor actually did suspect something, he would have probably wanted know about any asbestos contact, and I would have said there wasn't any; and he would not have pursued that area any longer.

So far, this letter sums up just about everything concerning my mesothelioma. I'll keep you posted as new developments occur.
I hope my letter will be of some help in your quest.
Thanks so much for caring.
regards from Dalinda

15th February; 2000.
Hi Deidre and Liz,
Today is the day I was supposed to be in Boston for surgery. I described that phase 1 clinical trial in a previous letter. Can you imagine how thankful I am that I'm sitting here (with only mild discomfort) writing this e-mail to you instead of being submitted to that vivisection in Boston?
Anyway, Happy Valentine's Day!!! Keep in touch. I look for mail from you every morning!
Regards, Dalinda

19th February; 2000
Deidre
Received your e-mail about Liz's Chris. I am so sorry to hear that news. As for you being closer to us- for all us to be closer, really that would be wonderful.
But we do have a spiritual bond that is stronger than any physical ties might be.
I will e-mail Liz straight away. Chris seems to be a fighter. Miracles do happen. The last thing any of us should do is give up.
Dalinda

22nd February; 2000
Hi Deidre -
Your web site gets better and better, and that's pretty good for something that started out being so good to begin with.
Nothing much new to report. Just one item I forget: two months before my mesothelioma diagnosis, I was diagnosed as having a malignant melanoma, which was removed surgically. Ironically, just as that problem was pronounced as having been cured, the mesothelioma happened.
I just read Sherry's story and was wondering if she would mind your giving me her e-mail address. Or, if she would like to contact me, I would be happy to hear from her.
Keep up the great work --
Dalinda

8th March; 2000
Hi Deidre
I haven't written for such a long time because I've had some vertigo, some kind of reaction that caused hives, and various pains all over. I'm feeling better now.
I'll be a better correspondent I hope. Things are going pretty much the same right now; nothing much really interesting to report. But I promise to write more often now that I am feeling better.
Regards, Dalinda.

13th March; 2000
Hi Liz,
I was so sorry to hear about the latest development with Chris. You both must continue to be strong. I know that won't be easy. You know that you have our prayers and support. Bob, my husband and I think of you two often.
Age doesn't seem to have any barriers when it comes to mesothelioma - I'm 62 and still going strong. I haven't lost any weight or appetite, though aches and pains are always there. The vertigo is an old symptom from pre-mesothelioma days. And the hives too.
Apparently there has been a long-standing autoimmune problem, and a couple of doctors were convinced I was suffering from MS. Now I think it's possible that the "MS" wasn't MS at all, but actually symptoms of very early stage mesothelioma.
If only they knew then what they (say) they know now!
Please don't give up hope. Bob and I want to hear from you as often as you feel like writing. Love, Dalinda

Hi Deidre,
I thought I would save you some time with your collating of all our letters if I wrote to Liz at the same time.
The Brazil trip sounds very interesting. I hope you will be able to go.
Most of my "news" is up in my message to Liz.
But I want to tell you how much we all need your web site. Without it we wouldn't have known about each other, and that would have been a loss for all of us.
I am still continuing with my "protocol" and am sure that my condition would have been much worse without it.
Mesothelioma simply hasn't responded yet to anything the docs have been able to devise. I don't want to knock the medical profession, but I do think they should give a lot more attention to alternative ways of dealing with it.
Has anyone else any ideas on the subject? I know Sherry has her own approach, which seems to be working for her. I am certain mine is working for me But the more pooling of information we can do, the better off we and your future correspondents will be.
Thanks again for "being there" for us Deidre
Love Dalinda

30th March; 2000
Deidre -
Such sad news - Chris's passing away. I'm forwarding a copy of my e-mail to Liz for you.
I like to think of us all as family. We are, in a way. I just wish we could somehow have a real "family reunion." I guess we'll have to be content with virtual reality, though.
My own condition is fairly stable. Just over another bout with the hives. It's becoming a little harder to breathe - especially after going up stairs. I find that taking short walks helps a bit. I'm experiencing a bit more pain too, but that's still manageable without strong pain killers.

Spring is here in Maryland, USA. The first signs - forsythia - are everywhere, yellow buds exploding over the whole countryside. And the fruit trees - all types - are in full blossom. Haven't seen a robin yet, though.
It must be the beginning of autumn where you are.
Haven't heard anything from you for awhile. Are you able to keep up with all the news from all of us? I look every day or so in your website for updates.
Love, Dalinda

Dear Liz - I was so sorry to hear of Chris's passing. Of course no letter is capable of expressing my sorrow and sympathy for you. All of us - victims and our loved ones, the survivors - are like a family to me. I have felt the bond so strongly. And Chris's passing is like a part of me passing too. No matter what the future may bring, we must all keep our family together.
Please keep in touch, Liz.
Love, Dalinda

Hi Deidre -
Just to let you know that I'm still OK. Healthy enough to go to my shop today for about 4 hours. I've been going every day for a few hours, but I may have to increase my appearances there now that it's spring here and all my best clients are returning to Maryland from Florida, where it stays warm all winter. I haven't heard from you for awhile; in fact I haven't heard from any of "the family" since Chris passed away. Let me know how things are going with you.
Love, Dalinda

25th July; 2000
Hi Deidre and Liz
I'm sorry I've been such a bad correspondent. I've been very busy, and I've neglected that.
So far I have been remarkably well. This is the ninth month since my diagnosis. Nine months ago I was diagnosed as Stage III mesothelioma. I'm still walking a mile a day on my treadmill, and the only problems I have are shortness of breath on really muggy, warm days here in the Baltimore area, occasional nagging pain, and fatigue.
I have stuck with "Dalinda's Protocol" except I've added two things - a supplement called blue-green algae, and another supplement called Coenzyme Q10. I'm convinced that my "longevity" is a result of constant boosting of my immune system.
No matter what anybody says, mesothelioma is terminal. None of the orthodox and invasive procedures can really do anything for it. Our own body is our best defence.
I'll try and keep in touch sooner
Dalinda

6th October; 2000.
Hi -
This is Bob, Dalinda's husband. I'll be keeping in touch with you from time to time, when Dalinda doesn't feel well enough to do that.
Dalinda's latest CT-Scan shows some deterioration in her condition, and yesterday was the first day she wasn't able to control the pain with just Tylenol. She's wearing a pain patch today and feels much better - but doesn't feel up to using the computer right now. The fact that she has done so well for so long is amazing.
It's been exactly one year since her diagnosis. And at that time the oncologists (3 of them) agreed that she was in Stage III. We've changed her 'protocol' only slightly, and we feel that her longevity and the excellent quality of life she has enjoyed so far, are the result of avoiding the conventional approach to cancer.
This kind of cancer just doesn't respond to conventional medicine.
Keep the e-mails coming.
Dalinda loves to hear from you.
Regards,
Bob

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