Sulfasalazine Update = Good News

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Sulfasalazine Update = Good News

by Cidorov on Thu Oct 06, 2005 12:00 AM

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My wife has been in the throws of pneutropenia for the last couple of weeks. She was hospitalized last wednesday after a week and a half of fever and cough. White count was 400. She has been given several antibiotics and finally had a bronchoscopy. Her mental status was poor and the Doc decided to do an MRI. She was scheduled for post radiation/temodar MRI on the 11th. The results show a 40% reduction in the mass!!! As of this morning her white count went from 48 yesterday to 1000 today. Now, rather than an open lung biopsy they were looking at doing tomorrow, they are going to let her recovering immune system try to fight it. We took SSZ during the temodar and radiation. We stopped when hospitalized. The Doc that was reluctant to use SSZ and wanted to stop it along with the temodar sounds like he wants to restart it when she recovers from the infection along with the Temodar. I understand this 40% reduction in mass is very unusual and we are very encouraged. I would like to hear anyones perspective on this because we dont want to unrealistically get our hopes up. This Sulfasalazine is experimental based on a study that came out in June. There have been no human trials but will be very soon out of the University of Alabama. I have another thread here with more details. Bob

Sulfasalazine Info???

by Pray__for_Mom on Tue Oct 18, 2005 12:00 AM

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Dear Bob, Please let me know what Dr. you are seeing and where. I have been reading about Sulfasalazine and am very interested. My sister was diagnosed with GBM 01/05. She has been treated with surgery, they felt they removed all of the tumor, radiation and Temador. Her last MRI showed two new tumors, these are inoperable. The Dr.'s have changed her Chemo, to another type of Chemo, which was administered by I.V. After this first new Chemo, she became very ill and weak. At the half way mark before her next I.V. treatment, her platelets were dangerously low, '6'! With all I have been reading about Sulfasalazine, I am even more hopeful! Since this is a medication currently being used to treat other conditions, and they have found it can possibly help GBM patients, will the Dr.'s prescribe it? Please tell me more!

Ssz

by Cidorov on Wed Oct 19, 2005 12:00 AM

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SSZ = Sulfasalazine or Azulfadine. It works by arresting the production of glutathione. Glutathione synthesis is responsable for surrounding healthy cell death and protects the GBM cells from normal cell death induced by radiation and chemo.. I am in Spokane, WA. and our Dr. is very reluctant. We are going to see how my wife tollerates a 28 day cycle of temodar before using SSZ again. We dont want to destroy her marrow and so are proceding cautiously. SSZ does have an impact on imunosuppression.. We just dont know how much when combined with Temodar. Her pneutropenia may have been as a result of the RT with Temodar or cumulative with SSZ. We are not desperate enough at this point to risk it. When our Oncologist stopped prescribing it at the end of her RT concurrent Temodar we asked her primary physician and she was willing. Dont take no for an answer. Let these people know that you have nothing to lose and that you will/can get SSZ elsewhere. i.e.Canada or Mexico. Let them know that as your Doctor they need to at least be aware so they can monitor her blood counts. We are talking about life or death here. This is a fight not an experiment. Desperate times call for desperate measures. This is a drug that is proven well tollerated in human beings. It has a good track record. There is no good reason not to try it and every good reason to try it. Be persistent. UCLA lists it as one of their drugs used to treat GBM. I just came across their web site that lists it. Call the Journal of Neuroscience and ask them to fax you a copy of Dr. Sontheimers paper and give a copy to your doctors. I wish you and your sister the best of luck and will ask the Lord to hear your prayers. People can do amazing things if they want to bad enough. Even defy death. Tell yer sister to hang in there. There are some amazing things on the horizon. Check out Oncolitics Biotech. They are getting ready to do three clinical trials on a virus called Reolysin. It infects and kills GBM and not healthy cells when infused into the brain. One trial will involve injection into the tumor. Another taken intraveniously and another as infused. These will be done through the University of Alabama. Which is also where the SSZ study was done. By the way, in November of 2004 another study was published out of the University of Leigh in Edinburg almost identicle to Sontheimers. Same relative success. It however focused on the proliferation pathways of GBM and the effects that SSZ has on it. There is alot more here that I have written on SSZ. Do a search for Sulfasalazine here and read. Also, Google search "cesium chloride" or "cancertutor". Some stuff I have been looking at but would not consider unless very desperate. Best of luck. I look forward to hearing how things go for you. Bob

Sulfasalazine

by Seacoast on Wed Oct 19, 2005 12:00 AM

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Hi Has anyone used or is using sulfasalazine in the treatment of brain cancer.

Sulfasalazine

by Seacoast on Wed Oct 19, 2005 12:00 AM

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Hi Bob: My brother was diagnosed with GBM and had an emergency operation. He started radiation and temodar now on the fourth week of treatment. He has also started sulfasalazine as he has read about Dr. Sontheimer's work. How long had your wife been taking this drug and what type of cancer was she inflicted with. When you say there was a forty percent reduction in mass are you talking brain cancer and GBM? What stage? I am very excited to hear about anyone with positive outcomes to date with GBM. Would you be willing to have a conversation by phone. Thanks....Nora

Seacoast

by Cidorov on Thu Oct 20, 2005 12:00 AM

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Seacoast, My wife has a stage 4 GBM for which they removed ~70% from her left frontal lobe. It crossed the midline so they left that alone. Dx on June 25. We took SSZ for eight weeks starting Aug, 8. That was during Temodar and radiation. As for knowing of anyone else doing this. No. I have not come across anyone yet. Anyone thinking of using SSZ should make sure they have a way to get the blood work done. Best done with yer Docs knowledge and perhaps prescribed by them. Our Doc origionaly prescribed it and then backed off so we had to get her primary to prescribe. Now in his notes he states that I am experimenting on my wife. When her MRI came back 40% reduced I didnt poke him in the eye too hard but I did just a little. As for phone commo...I think they will delete this message if I post my number or email address. You can try to go to tate-inc web site. Call their offfice in Spokane, wa and leave your number for me. Just tell them what it is for and they will know who to get the number to. Good luck, Bob

Re: Gbm & Sulfasalazine

by Seacoast on Thu Oct 20, 2005 12:00 AM

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Hi Bob: My brother was diagnosed the end of Aug 05 and had emergency surgery. He was having seizures for four months prior but doctors kept telling him there was nothing wrong. He is just finishing the fourth week of radiation and Temodal. During the third week he had his doctor prescribe sulfasalazine 500mg per tablet and he is taking five per day (one every 4-5 hours). After 8 days of adding the sulfasalazine to his treatment plan he is not feeling any different. Prior to commencing this new drug the doctors did take blood work and plan to monitor the blood work. I see on other peoples temodal treatment they take it 5 days a week with the radiation. My brother takes his every day while radiation is five days a week. What type of program is your wife on? Is there something specific that we should be aware of as to blood work. What questions should we be asking? His tumor was in his right temporal lobe and I believe it was quite large. I am told the surgeon did a wonderful job and removed up to 85%. Does anyone have any theory as to what the cause of Gbm might be. My brother is a farmer and has had his share of stress. Another MRI is planned late November so we hope for good results. I will keep your wife in my prayers. Prayers are powerful and we must put trust in the Lord. It is very nice to be able to commincate with someone who knows what we are going through, I thank you.

Ssz

by Cidorov on Thu Oct 20, 2005 12:00 AM

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Don't get descouraged. From what I have seen in the literature it may not be noticable right away. There is some symptoms associated with dying tumors or cancer cells. Take a look at cancertutor web site. They promote a subsatnce called "cesiun" which they claim has to be used sparingly due to cancer cell death so rapid that toxins build up that can be very bad. Also, the way I understand the cause of seizures is due to edema or fluid/swelling around the tumor cells puts pressure on the brain. Most of the reason folks with GBM are on cortico-steroids. Although my wifes mass is 40% less there is alot of stuff on the MRI that looks like edema. She is also more symptomatic (aphasia and right side weakness) in part from the pneumonia weakness and probably from the activity in the mellon. Something else to consider...Is he taking Iron. If so, dont take it within an hour of the SSZ. Nether before or after. They interfere with each other. Just a thought. Seriously look at cancer tutor web site. I would like someone elses opinion of it. Smells like consperacy theory but is also pretty sound lloking stuff. We will definitely go that route if we get very desperate. Nothing to lose... As for your SSZ dosing, folks get worked up to 4 to grams a day and is well tollerated. We took it for 8 weeks with a gram every 4 hours the last 5 weeks. SSZ has a short half life = 2.5 hours. It is not very bio-available so must be taken often. Standard treatment begins with tumor resection followed by radiation with concurrent Temodar: Temodar daily and RT weekdays for 6 or seven weeks. The fourth week we switched to IMRT (Intensity modulated Radiation Therapy). Which is much more intense and less damaging to surrounding healthy cells. It is 260+ beams of lower intensity radiation focused to combine on more specific areas. After the RT/Temodar the protocal calls for 6-8 weeks of recovery. Then 28 day cycles of much higher doses of Temodar. Usually double the previouse dose. During the cycle Temodar is taken for the first five and then 23 days of recovery. Then another 28 day cycle. This is the National Cancer Institute protocal most Docs adhere to because it is what the research supports. It is also refered to as paliative. That is it "buys more time" and is not a cure. Here is what you may encounter. Most folks dont feel the effects of RT/Temodar while taking it. Within a week or two the bottom falls out. White blood cells may plummet. Normal WBC values are 2K to 6K. Between 2K and 1K is still okay but...Below 1K is bad. Below 600 is very bad. The temodar manufacturer literature strongly recomends people on the 45 day temodar/RT be on a profilactic anti-biotic during the treatment. The real value to watch is a subset of the WBC called the ANC or Absolute Neutrofil Count. These are the immature WBC. Which is an indication that the marrow is producing. If not producing then the over all count is on the way down. The big risk here is infection. There are some stats out there that suggest most cancer patients dont die from cancer but infection during treatment. Be very careful and advocate for your brother. No one else will. There should also be a liver function test with regards to the SSZ. With everything else going on this is a must. The liver is working very hard. Some literature cautions against renal problems also. There is lots of info out there on medications and the "patient handout". Google Sulfasalazine or Azulfadine. The statistics you will see out there are very dismal and old. There are survivors out there and the stats are not based on current treatments. They do suggest that the biggest indicators for survivability are age and participation in a clinical trial. I hope this helps and can answer as many of your questions as I have time. I have more later. There are some good supplement and nutrition sites out there but buyer beware. We take b-12, Folic Acid, Garlic, green tea extract, and fish oil. We also take Manipol which is a glyconutrient product. Glyconutrients can be expensive but Manipol is the common ingredient and can be gotten from the manufacturer for alot less. You will have to do some research to sort this stuff out. Thats all for now. Good luck and Gods Speed. I really believe he has good things for us. We have to ask though and believe. Have you seen the movie, "The five people you meet in Heaven". Its great. We were emotionally exhausted afterward. Bob

Re: Ssz

by Seacoast on Sun Oct 23, 2005 12:00 AM

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Hi Bob: I went to the cancertutor website and the information is overwhelming. I have heard of the glyconutrients and we are going to pick up a video and information on this today. I have had emails come to me with good results. Life is strange. I too am a farmer and this year for the first time I have delved into organic farming with 0.5 acres of strawberry plants. To go from conventional farming to organic we must wrap our brain around and accept a whole new concept. The basis of which is a healthy soil, a healthy crop. The more I learned about organics and the interaction of all involved the more I would grasp the concepts and like the concepts. The human body is now how I relate to the soil. The old saying you are what you eat is really coming through. The cancer tutor web site is basically saying a healthy diet should result in a healthy body. I really do believe that much of todays cancer is a reflection of environmantal conditions including our food choices we make. A member of our community was diagnosed with prostate cancer and given one year. He refused conventional treatment and started supplements such as shark cartilage and such, now on pawpaw and aftersix years he is still going and appears to be in good health. He and his wife are true believers. I will be discussing some dietary choices with my brother today to start the transition of healthy choices. It is interesting to note that the dose of SSZ was up to one gram per four hours. My brother is still at 500g per 4-5 hours. He has now been on it for ten days or so. Keep in touch. Nora

Ssz/bob m

by Oceantrumphet on Thu Nov 03, 2005 12:00 AM

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how is wife? i cant get any ssz from doctors. dr nabors at uab said it might be ready in december. my dad had a bad seizure 3 weeks ago has not recovered yet. i printed all info you have said here all i got from family doc was can't do it. later, oceantrumphet
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