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Marla Barnett

Texas; barrs05@aol.com

1958 / Class of 2000 / Type: IgG Kappa / Family history of immune system diseases / Possible Aspartame toxicity / Last update: 1/03

I was born May 27,1958, in San Angelo, TX. I am nearing 44 years next month. My dad was in the Air Force, so we moved a lot, but fortunately we never moved out of the state of Texas. My dad being a country boy never liked the big city so we lived in a suburb of the big towns he was stationed at when possible. While growing up, I was as healthy as a horse, other than being overweight most of my life, but I always kept active playing softball, tennis and volleyball. I never spent a day in the hospital from the time I was born until I had my first child in 1981. 

I met my wonderful and supportive husband in 1980, and we made our home in a small town in Texas just outside of Bryan-College Station Texas, home of the Texas A & M Aggies. (That has been a trip: I am a Texas Longhorn fan, while hubby is a diehard Aggie fan.) Anyway, we had 3 wonderful children, a daughter than 2 sons. In 1995 I started having a racing heart and retaining fluid. My pulse rate sitting still was 144 beats per minute. After making 2 different trips to ER room thinking I was having a heart attack, they found that my thyroid had gone crazy, or Hyper, as they would put it. They got the rates slowed down, and then they gave me radioactive iodine to kill my thyroid. About 8 months later I had to start on Synthyroid and have been on it since. 

I want to share this next info with others so they and maybe the doctors can become aware of it and maybe study it to see if they can prove that this is indeed possible. Many years ago my younger brother was diagnosed with a rare blood disease. I'm sorry I cannot even begin to say or spell the name of it because it is a mile long. This disease is a disease caused by the immune system. Then, in 1995, both my mother and myself had our thyroids go crazy, and they had to kill them. They called our disease Graves Disease and this is caused by the immune system. Next, in 1998, my daughter was diagnosed with Chrons Disease, another disease of the Immune System. Finally, in January of 2000, I was diagnosed with Multiple Myeloma with lesions, another disease caused by the immune system. So you see, there is a history of diseases here in the family, all diseases of the Immune System. 

Now lucky for me the oncologist I was referred to was a former doctor and researcher of the great hospital in Houston, M.D. Anderson Cancer Center. When he found out the history of all these immune system diseases in my family he said there was a great possibility that this was being caused by a bad gene being passed down from my mother, since there was not a bit of this history on my dad's side of family or with him. Unfortunately, my mother was killed in an auto accident in 1997, so there was no way of bringing her in for testing to study this angle. But it does seem like too much evidence here that there could be a possibility here that a bad gene could be the culprit of ours and many other diseases of the immune system. So, if you do have this disease, check around with your relatives and see if there are any of them who suffer also from a disease of the immune system, than let your doctor know this, so maybe they can bring them in and do a study to see if this is possible. Who knows, maybe they will find that this bad gene is the culprit and find a way to stop it thus stopping these diseases. My doctor sure thinks it is a great possibility. 

The way my disease started was that I just thought I had pulled a muscle in my right shoulder. My boys were playing football and it landed at my feet. I picked it up and threw it and experienced great pain when I did. It would not go away and got worse. This was in August of 1999. By Oct. of 1999 I ended up in ER room in unbearable pain. They did x-rays, but could not find anything. They gave me muscle relaxers and pain killers, and told me get an appointment with Orthopedic Doctor. I did, and he saw nothing on the x-rays and kept me on the muscle relaxers and pain killers. In Dec. of 1999 I had surgery where they took part of stomach and wrapped it around my esophagus to create a new sphincter, they called it, and repaired a hernia. I had acid reflux very bad. I had put my shoulder treatment on hold for this, but they had given me a shot of Cortisone in the shoulder right before the surgery. Finally, in Jan. of 2000, my doctor ordered an MRI on my shoulder. The damage in my shoulder that did not show up on normal x-rays showed up very well on the MRI. Seeing the damage, he suspected what I had, so he ordered blood work and urine work. Then came the verdict, I had Multiple Myeloma. I immediately got on the Internet and started looking up everything I could find on it and it scared the heck out of me. I later found out that the information I was looking at was based on the average age of the people who get this disease--most people in their 60's and 70's--and that at this age it is much harder for them to fight it. 

Of course, you would know that the company I work for had changed insurance coverage that year and we were now on an HMO plan. I had the extra hassle of battling my insurance, which was an ordeal in itself. They had no HMO oncologist in my area, so they had to send me to one of their PPO providers, and that is where I was fortunate to be sent to Dr. Avi Markowitz in Bryan, TX at the St. Joseph Cancer Center. Like I said before, he had formally worked at M.D. Anderson Hospital in Houston, TX. He had them put an intravenous port in my chest and had a barrage of tests and x-rays done. I had a total body x-ray, a bone scan, and a biopsy done on my shoulder. As I would tell everyone, I had one heck of a bone picture porfolio. As my treatment, he would start out by giving me Aredia, then something in the IV for nausea. Then they hooked up a portable box with my chemo to my chest on a Monday that I would have to wear plugged in till the following Friday. He was giving me a mixture of Vincristine and Adriamycin. I was put on a steroids therapy too. About 3 weeks after my first treatment, the day before my daughter's wedding, my hair fell out in clumps. I told the kids we could have a blast, just grab a handful of hair, lightly tug than we could throw it at my daughter and new son-in-law the next day at the wedding. I had very thick hair. 

Anyway, I went through 5 treatments of this, and then was sent to MD Anderson to see Dr. Giralt about a BMT. He decided I needed 2 more monthly treatments, but decided to leave out the Vincristine because I was experiencing numbness in my feet and hands, and this causes that. After my second treatment, it just became normal standard for Dr. Markowitz to prescribe me an antibiotic called Dyoflucen, because my treatments within a few days would break my mouth out with thrush. When told I would have to go through Chemo, I tried to look at the good things about it, like "oh boy, I would finally lose some weight", like I saw other people do when they were on it. Wrong, the steroids make you hungry as heck, but they also make everything taste like crap. 

Finally, in Sept of 2000, I went in to M.D. Anderson, and they gave me a big bag of chemo, Sorry, I can remember my counts or the name of some of the chemos, I had them all written down, but while we have boxes in storage, while moving the storage building leaked on this box and ruined my notebook that had it all written down. Anyway, they gave me this chemo then a big bag of Laxics followed that. Laxics made my blood pressure drop to 70/50, and they put me in the hospital and kept me 3 days. I felt fine before they got me in the room, but they were worried, so wanted to watch me. Then I started giving myself shots 2 times a day to get my baby bone marrow to jump out of bone into my river of blood so they could collect them. I was lucky enough they were able to collect enough in one collection, and I got to go home for a couple of weeks and enjoy my family. I went back and they put me in hospital, and the next 2 days they gave me a small bag of chemo called Melphalan each day. When the next day I showed no side effects, they let me leave hospital and go to the apartment I had had to rent there in Houston, and then it was just a waiting game. Everyday I had to have blood drawn to see if my counts had gone down enough to put my bone marrow back in. I had to wear a mask whenever I left apartment or had anyone come to the apartment who might be sick. Finally, the day came when they told me I would come in and they would put my bone marrow back in. Putting them back in is a breeze. Had to start those shots again for a few days as well. 

Well, the days that followed was simply going to the hospital getting blood work done to watch my counts. I had to wear a couple of bottles of Potassium plugged into my catheter, and I did have to have a transplant of plasma done, but that was the only trouble I had. In 2 weeks my counts had bounced back so fast they let me move back home and follow up with my doctor here, since they knew him well and trusted him completely. I came home the first week in Nov. 2000, and I was back to work on Dec.18, and fulltime at that. They affectionately called me the medical marvel there at the hospital, because they had never seen anyone respond so well as I did or have so much positive attitude as I did. 

Let me tell you, your attitude has a lot to do with how you will beat this disease. At first, I thought "why me?" Then I realized that maybe God had decided to not intervene and stop the Devil from giving me this disease for a reason. I just told God "I am putting myself in your hands Lord, I just ask that you give me and my family the strength to do what we got to do." I always kept my spirits up, joking with the doctors and nurses. I had lots of people praying for me, as I played Bingo on a site on the Internet where there was chat. I found out that I helped others who were battling many different forms of cancer, who were very depressed when they heard my chat, or some people I talked to in person who said "how can you be so cheerful?" Well, look at your disease this way, will ya? You got it, but are you going to let it get you? 

I have a wonderful husband and kids I want to live for. I am a fighter, and I will beat it as many times as it takes, which I am fixing to have to wage war with it again. I was in remission from Feb. 2001 till my testing on my urine in Feb. 2002 has shown it has come out of remission, but it is only registering a 0.80. I am going back to M.D. Anderson in a week to find out how we are going to fight it this time, and I have no doubt we will beat it again. Thank God I have PPO insurance this time. I kind of suspected it was back, because I have been having pain in the area they found lesions in the first time. My right shoulder had the most damage. I had a spot of my lower rib bone, my thoracic spine, my right hip, and 3 spots on my skull. Anyway, I know that I am going to one of best hospitals in the world. People from all over the world are sent to M.D. Anderson. 

Maybe the reason I have to struggle with this disease is so I can help lift the spirits of others with my positive attitude. If that is it, so be it, but that is the key. Even my doctors told me there is scientific proof that your attitude contributes a lot to your treatment, so remember that when you are going through this. Since my transplant, the only medicine I have had to take is Fosamax once a week. It is another bone building medicine. I chose this since my port and catheters had all been removed, and I was tired of having to have an IV put in my hand once a month for the Aredia to be put in. One good thing the doctors have told me already is that if I have to have another BMT, they were able to collect enough of my bone marrow last time to do another one, so won't have to worry about finding a donor this time, as they said they could only collect your own bone marrow once and not again. I will update and let you know how my fight with this disease is going this time, as it progresses, and it won't be as long next time since don't have to fill you in on my history again. Just remember keep the faith and don't ever give up to it.

Boy, do I have some information for you since I first submitted my story. First let me begin by letting you know that I have IGG Kappa Stage 2 Myeloma. My Bence-Jones protein showed a .03 in my blood work and a .08 in my urine on my last check up showing I was coming out of remission. 

Now just 2 days before I went to my appointment on April 16, 2002 at M.D. Anderson Hospital in Houston my daughter and son-in-law came home from his parents' house and gave me some information. His mother told him they had heard about a chemical in NutraSweet called Aspartame which turned into formaldehyde in your body causing damage. On Monday the day before my appointment I decided to go in on Keyword on AOL and type in the word Aspartame and see what was up. Boy, was I in for a shock! I had been a very healthy person until about the past 10 years. I have suffered from severe head aches, joint pains, loss of vision and memory, dizzy spells and gastro problems. I have had MRIs Cat Scans, Gastro doctor went in my colon and stomach from both ends and they could never find the trouble. Have survived for years on high doses of over counter pain killers, gas-x as well as anti-inflammatory pills and muscle relaxers but no diagnosis. Was beginning to think I was crazy but gave up hope. When diagnosed with Multiple Myeloma thought maybe this all linked into this disease. 

Now let me tell you, I have ingested a daily average of a 3 liter bottle of first, Diet Coke, then changed to Diet Dr. Pepper every since they put NutraSweet in them. Sometimes more than 3 liters. Thought I was doing a healthy thing for my body. Well, when I was put on the steroids they changed the taste of things so much I could not stand to drink the Diet Dr. Pepper or even Sweet-n-Low. So stopped consuming them within 2 weeks of my first dose of steroids which was in Feb. of 2000. Did not drink or take anything with Aspartame in it till Jan. of 2001 after totally off steroids. I noticed that during my treatments after a few weeks I did not have the problems I had been having in the past so I thought to myself it was this disease all along. Now after I started back to drinking it over a year ago I have these same problems and more. 

When studying Aspartame poisoning on internet found out that is being linked to causing brain tumors and other cancers. All my oncologist here could say was how great I was responding to the treatments. My bone marrow transplant doctors at MD called me the miracle patient at the hospital because they had never seen anybody's counts respond and go down so quickly. 

I then asked my bone marrow doctor at MD during my appointment when I presented this information and he told me that he could not say yes nor no at this moment in time. He did tell me that considering the amount of this poison I had been consuming and the amount of time I had been consuming it that it would take a lot of time to totally get it out of my body.

He felt that the safest thing to do at this point of time was for me to go on the Thalidomide and Dexamethasone low dosage therapy and to stay plumb away from anything with Aspartame in it and we would see what happens. It really makes you wonder if these counts were responding so well to the treatments or if it was just that my system was getting rid of this poison. I have not had any of it in my system for 4 days now and already the bloating and gas are gone from my stomach, I did not have to take Excedrin for migraines but once today, and my back, hips and other joints which were a constant pain were barely noticeable today. I had more energy today than I have had in a long time. 

I go to my oncologist here at home next Tuesday to get started on my treatment but I know that even if I do have this disease that my other problems appear to be on the mend. I used to work for a Chinese herbalist and they have a Chinese all natural herb tea that will cleanse the body of all toxins. I intend to go tomorrow and get some of this and hope it will help flush this poison out of my system.

May 2, 2002: Well, I had an appointment with my local Oncologist on Tuesday 4/22/02. I discussed with him my findings on Aspartame and he was very much open to the possibility that it may in some way be involved with my MM. He wanted to do some more blood work and and to contact M.D. Anderson Hospital and have them send my last lab findings that they had taken. He also informed me that I had actually started coming out of remission in Oct. of 2001, which means I was not in remission for even a year. M.D. Anderson had ordered some lab work to be done here at a my local doctors office and this doctor had faxed my oncologist here, as well as M.D. Anderson, the final report. 

My oncologist here noticed the spike in my counts and because I had not returned to him he had assumed that M.D. Anderson had now totally taken over my care. Why M.D. Anderson did not notice or make mention of the spike in my count back then we do not know. Anyway, if my serum protein levels were not making a drastic increase he would make his decision and let me know at my visit today. Well, my levels in a 6 month period have only come up to a .07 which is very low at this time, so he does not consider me to be in a danger level yet. He does not want to start any treatments yet so that we may give my body time to rid itself of the Aspartame poison that I have oh-so-faithfully filled it full of for 15 years now. 

My doctor wants for me to stay totally away from anything with Aspartame in it, which I have already been away from for 19 days now and feeling better all the time. In a month I will go back and have more lab work done, and if my levels are the same we will try another month giving my body plenty of time to clear itself of this poison. If my counts go down or disappear we will have made a good discovery concerning my own body. If my counts go up we will start Dex and Thalidomide as my next phase of treatment. My doctor does believe that I do truly have MM but he said if all signs disappear it will not be the first time that medical science has been proven wrong. 

As for whether Aspartame caused my getting MM, he said that there is too much proof already connecting toxins to cancer for him to sit there and say "oh no I don't believe there is any connection." He has long believed toxins are the guilty culprit with a connection to cancer. 

Well, that is the update so far and I will let you know what comes out of my next month's visit.

June 14, 2002: Well, just over a month I have been having severe pain in my right hip and lower back, so I went back to my orthopedic doctor and he ordered an MRI done. It took 2 weeks from the time of my visit to get in for the MRI, they are so booked up. Well, the MM has now started in my pelvic bone right above my tail bone as well as my lower spine. There is a pretty good amount of damage done there already. This has ruled out that the Aspartame poisoning I mentioned before is mimicking MM. The doctor and I had already pretty much figured this was not the case, but we wanted to check and see just the same.

The pain I had in the ER room around my right rib area back in Jan. 2002 they also feel we are going to find out is the MM in that area, as well as in my right shoulder that has been aching again. I go this coming Monday for a full body bone scan to see where all it might be at this time. My blood serum levels went from 0.07 to 1.1 in a months time which my doctor says is still very low. They have put me on a walker to take the stress off my right hip and to not put the stress all on my right shoulder by using a cane instead. They are stating me on Thalidomide and Dex and he has decided to still rule out using radiation at the moment. I will start monthly infusions of Zometa as well. He feels that this treatment might well clear it up and put it back into remission without the use of radiation or another bone marrow transplant.

So this is where I am at this moment. I have put my armor on and drawn my sword to do battle with this disease again, and being a very determined person I know I will win again. Other than the pain, I feel very good I am full of energy like I have not had in a long time. Good luck to you all and will keep you posted on my progress.

January 2, 2003: Well, I am doing great! My oncologist here started me on the Thalidomide and the Dex steroid and kept me on them for 5 months. I also was having an injection of Zometa in my hand once a month as well. I was taking 200 mg the first month of the Thalidomide and than 250 mg from than on of it. He had me once again on the Dex at 10 a day for 4 days, then 4 days off. On the sixth month he changed me from the Dex to Prednisone, the highest dose you can get, and I had to take it every other day. I gained 15 lbs. in that one month while on it and swelled up with a lot more fluid than I was already carrying. They had me stop the Prednisone and taking fluid pills, and I lost 14-3/4 lbs. in one week. It was just a lot of fluid. When they stopped the Prednisone my lab work had come back showing no sign of the MM in my blood. When the lab work came back the second month, while not having taken any steroid during this month, my doctor decided to totally leave me off the steroids at this point of time.

So now I am in total remission once again, having had 2 months of labs with no MM showing up in my blood work. I am still on the Thalidomide and the Zometa, as well as Coumadin, a blood thinner, and 1 aspirin a day, but that is it. After 4 months I was taken off the walker and put on a cane, and after 2 months on the cane I was finally allowed to stop using anything. I had a full adult bone survey done on 12/27/02 and will find out on my next doctors visit on 1/9/03 if it shows signs that the Zometa had done well repairing my damaged bones. I still have some pain sometimes if I sit too long certain ways or over do it, but am much better there too. I did take a spill on some concrete the day before my bone survey and pulled a lot of muscles, but I don't think I broke anything. I go for my labs tomorrow, 01/03/03, so the results will be back for my doctors visit on the 9th, but hopefully the results will be the same showing no signs of the MM in my blood.

My doctor intends to keep me on the Thalidomide and Zometa for an undetermined amount of time at this point due to the fact that they are both showing good signs so far in the studies at keeping the MM from being able to come back. In other words, as a preventive measure. I don't mind these 2 drugs at all. I sleep like a baby with the Thalidomide, and it only takes 15 minutes to run the Zometa thru an IV in my hand each month. The Dex is what I really hated. I was on it so long that on the 4 days I was not taking it I began to shake really bad, so bad you could even hear it in my voice. I told my hubby that I bet everyone who saw me thought I was a Heroin addict needing a fix. Never used Heroin in my life but have seen shows on TV showing people who used it going thru withdrawal, and this is what I looked like. I swelled up with so much fluid I felt like the Pillsbury Doughboy. It got to where I could hardly eat anything because things tasted so bad, and even though I was on the steroids I had lost any appetite at all. Can't say that now, as I am trying to quit smoking and am eating everything in site. Well, that is where I am at at this point. I wish you all the best of luck with your battle with this disease and will continue to pray for you all and that they may find a cure for it soon. God Bless and keep you all.

Marla Barnett Myeloma Conqueror

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