Cytoxan and Mesna and some other things that might help

[me2]

I took Cytoxan without Mesna thirty years ago and developed hemorragic cystitis. I am taking Cytoxan again now but not orally, I am taking it by IV every two weeks with Mesna on the day of the infusion.
Mesna costs me $118 per pill. I take one pill on that day in halves. The Mesna works very well for me. I have had no bladder pain.
I have been searching online for any possible natural substance that does the same thing as Mesna. It took a long time but I found two interesting studies. The studies investigate the combination of some natural substances with Mesna to see if they improve the protective effect of the Mesna.
In two different studies they found that there were some natural substances that improved the protective effect of Mesna. (I am left to wonder if the natural substances might also have some protective effect against the metabolites of Cytoxan just on their own, with no Mesna)

One thing that impressed me deeply is that substances were found in green tea and in berries that improved the effect of Mesna. These are two things that I have been craving after Cytoxan infusions. I am a believer that our bodies can know at times what is good for us. I am so glad I have been following these cravings. I am now going to add the additional substances listed in these two studies.

I found it helpful to google them by name and look at the Wikipedia article on them to find sources for them. They are- vitamin E, melatonin, quercitin and catechine. Beta carotene did not help.

I would love to hear what others think about this. Here are the two articles:

SpringerLink - (http://www.springerlink.com/content/fq2tt849b50yqeny/)

SpringerLink - (http://www.springerlink.com/content/h107118027888707/)

[Sangye]

Wow! Amazing that you would crave those very foods. I wonder why the docs aren't recommending most of those nutrients for those on ctx? Maybe they will when the pharmaceutical companies come up with expensive synthetic forms. :glare:

(One caution with melatonin, though-- the jury is still out on it's immune-boosting abilities and it's contraindicated for us.)

Thanks for posting this, me2. Gonna help a lot of people stay safe. :smile1:

[me2]

Sangye thanks for the tip on melatonin. My doctor recomends it to me for sleep and that leads into your question about why docs aren't recommending those nutrients for those on ctx. You pretty much answered your own question with the pharmaceutical joke/truth.

In my experience (unfortunatly very LARGE body of experience) doctors know almost nothing about the effects of nutrition, herbs, exercise, or life style. What little they do know they do not tend to share.

They are highly trained and programmed to administer drugs and surgery. Anything outside of that and they are largely mute or misinformed. This unfortunatly leads many people to undervalue these things. They think the doctor is looking after their health. The doctor is not, the doctor is looking after your disease.

We have the most expensive 'health' care system in the world but look at the average American and tell me if they look 'healthy'. Americans are lumbering abominations. I traveled to China a few years ago and you could spot an American a mile away - they are almost all overweight. (And yes, I adjusted my mental study to assumed that maybe two of the ones I saw were on prednisone) And I'll bet you dollars to doughnuts the weight is not from too many walnuts and salmon. mmmmmm doughnuts...
There is a gaping chasm between the treatment of disease and the promotion of health in this country. I know you know all this but it seems to me like it can't be talked about enough. Much of the world has little to no access to anything we would recognize as health care and yet they lead healthier , longer lives. Americans have used the miracles of medical science to overindulge. Can you imagine the life expectancy of someone on an American diet with third world healt care? fuh getta bout it Sorry, no bypass surgery for you.
Sangye , you have been an invaluable source of help to people here in this department. I suspect that many here are like me in that we won't hear about health care from most of the doctors we see. So , it falls on us to find out things for ourselves. That is why I was so inspired to do this research on Mesna. In my opinion there is a large gap in knowlege and use of Mesna and things that can protect us from the damage of Cytoxan. It is now my natural assumption that there are extremely important things for me to know and I won't hear about them from any doctor.

Rituxan has grabbed a lot of attention for the wonderful alternative it is but the fact is many people will still have to use Cytoxan and Mesna is a great way to protect from the effects on the bladder. I think I read many years ago that there is a 16 percent bladder cancer rate at twenty years from Cytoxan use (don't quote me, I'm going from distant memory). It seems likely to me that that rate is a mix of people who used Mesna and people who did not, I might even guess mostly not (I took Cytoxan for almost two years and was never told about Mesna). I would like to see a study on using Mesna and these other natural substances (which these studies suggest provide considerable protection) and the cancer rate of those users.

Wouldn't it be important to WG patients to have that information? (and people with other diseases who use cytoxan)
Why doesn't the fact sheet with drugs come out with a list of things that ENHANCE the particular drug? All we are given are contraindications right?

[Sangye]

I agree with everything you said, me2. MDs definitely are just treating disease and not promoting good health--and certainly not prevention. Now in our case treating disease is a big thing, but it still leaves us with lots of side effects and damage and nothing in the way of repair. I couldn't imagine just having medical care and not holistic care also. I'd be long gone.

[me2]

Sangye you and I have shared a lot of experience and I have seen that we share the same perspective. I'm sorry about the way I said some things in my post above, I'm not trying to say things that hurt people or are insensitive, its just that I get a little worked up on the subject of health. I need to learn to speak with more compassion , I really do feel it for people even though I don't always sound that way. It really makes my heart ache to see how much the general public is out of touch with taking care of themselves. I would love to see people be more aware and inspired to be as healthy as they can be and not just wait for a disease to happen and hope doctors can fix it.

What you said about WG is so true. I know there have been times when I was so overwhelmed and weak all I could concentrate on was the disease and I didn't do so great on supporting my health. Now that I am feeling a little better I am putting my energy more into health care and gaing more knowlege and trying share with others.

You are the only one that has responded to this thread , I thought I had found something fairly signficant in these studies. I still would like to run that info by one of the experts on WG and perhaps have them comment. If these are good studies and what they say is valid I think it is information that anyone using Cytoxan should have. I'm going to keep working on it. One doctor that I have seen for thirty years is a very big wig for a major teaching hospital. He is also a scientist. I will run this info by him next time I see him and see what he thinks.

[me2]

Ok, so already I am finding more. My poor doctor is going to really get a lot of questions my next visit.

Protective Effect of Zinc on Cyclophosphamide-Induced Hematoxicity and Urotoxicity

[me2]

Oh, sorry, the above sentence about 'Protective Effect...' needs to be cut and pasted onto Pubmed to get the article.
Here is another one to do the same thing with.
Protective effect of taurine against cyclophosphamide-induced urinary bladder toxicity in rats.

(sorry I don't know why it is giant font) I find the conclusion of the study of taurine to be quite stunning. Why isn't there a big fact sheet about these things given when I get my cytoxan infusion? It seems that there are a multitude of things that help with protecting the bladder and even bone marrow toxicity.

[me2]

But wait, theres more... Search this one on Pubmed:

Protective effect of berberine on cyclophosphamide-induced haemorrhagic cystitis in rats

Evidently berberine has long been used in Auryvedic and Chinese medicine. Some of these substances are being tested and studied without being in combination with Mesna. This is particularily interesting given the expense of Mesna. A person might find continued protection by using these herbs and supplements. I'm really surprised at the number of things I am finding. I will have to organize these studies and have their safety evaluated by someone in medicine. A single article evaluating them all and their contraindications would be great.

[elephant]

Me2, interesting articles and valuable information. I think that some doctors are slow to give "alternative medicine" because it has not been used in humans for a long time. For ezample: I am taking Bactrim every other day and my doctor did not suggest pro biotic to help keep the stomach insync. Many of the doctors that I see just hand you a prescription to cover the ailment.

[Sangye]

Great info, me2. Yes, you and I definitely share the same opinions about health! You'd make a good holistic doc. :smile1:

Elephant, most herbs and food-based nutrients have been used by humans for millenia. It's the drugs that are the new and untested dangers. The medical profession has convinced the public that they have the monopoly on science and everything else is pseudoscience, and that not only are their offerings (drugs or surgery) the best, but that they are the only ones who are qualified to evaluate any other forms of treatment. It's quite a pedestal they've built for themselves. :glare:

[me2]

Great info, me2. Yes, you and I definitely share the same opinions about health! You'd make a good holistic doc. :smile1:

Elephant, most herbs and food-based nutrients have been used by humans for millenia. It's the drugs that are the new and untested dangers. The medical profession has convinced the public that they have the monopoly on science and everything else is pseudoscience, and that not only are their offerings (drugs or surgery) the best, but that they are the only ones who are qualified to evaluate any other forms of treatment. It's quite a pedestal they've built for themselves. :glare:

Very well put Sangye, the perspective you give here has really been growing in my consciousness. For example I was struck by the comment on Wikipea about berberine that is has been used for hundreds if not thousands of years. Well geeze, how long of a study do we need on this? ha

I appreciate what you are saying too Elephant. Doctors are cautious and to a great extent this is a good thing. They want to see science applied to things before they recommend them. The problem is that many things will NEVER be studied because they are commonly available and not patentable, ergo no fat profit in it. This is the dark side of our system of medicine. My scientist doctor has pointed this out to me himself.

I think making the combination between a disease approach and a health approach is a fascinating and rewarding subject. I'm glad that so many here on this web site are also interested in this even though WG largely forces us to be disease focused.

Well, I'm feeling chipper today and I'm off on a long road trip. Its been a long time since I could do such a thing. I wish you all here a great day also.

[Sangye]

So glad you're feeling well enough to go on a road trip! Have a great time.

[elephant]

I agree on the thinking, " The medical profession has convinced the public that they have the monopoly on science." I am still stuck on their pedestal unfortunately, but willing to change my beliefs and trust in holistic medicine.

[me2]

Road trip was great but I was wiped out the next day. Good trade off in my book.

I found another interesting article. I told Sangye elsewhere that I was having trouble not craving tomatoe sauce and that it made me feel good afterward even though it was contraindicated . Perhaps it has a benifit that outweighs the heat factor. Check out this article:
Antiperoxidative and anti-apoptotic effects of lyc... [Reprod Fertil Dev. 2010] - PubMed result (http://www.ncbi.nlm.nih.gov/pubmed/20353718)

I am finding lots of other stuff and replication of results in different studies.

I am working on putting all this cytoxan protective stuff together and getting some quality medical science input to these studies. I am lucky to have some connections to a respected teaching and research hospital. We shall see what help I can get.

I realize that I can't just read a study and think that it means what I think it means although many of the substances they find protective seem quite harmless to try until I get things worked out. I do Cytoxan infusion tomorrow and I am going to try some of the easy suggestions as an experiment. I know there is some risk but then there is some risk in not doing anything.

Let us see if we can make a little room on the pedestal for elephant and me2 and some fresh ideas.
If there is some good science here I would like to be handed some print outs at the time of Cytoxan infusion that informs me of things I can take to help protect me from the drug effects- why not? Don't people deserve to be informed?