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6-mp and HSTCL / Has anyone gotten cancer from 6-MP?
- Thread starter ce1210
- Start date
rygon
Moderator
I found this slide show which gives you some good information if you can follow it.
http://vid.imedex.com/pdf/5477/siegel.pdf
If I have read it correctly, you are more at risk of dying with untreated crohns, than with taking 6-MP.
You have to think of your health now, and what damage you can do to your bowels if not in remission (scarring, surgery, increased chance of cancer, malnutrition)
Have you look in diets (paleo, SCD etc) as these may help with crohns. I have done a mixture of taking drugs and diet, and unfortunately I have to do both to feel good. I understand the risks of the drugs I am taking, but I sure feel its worth a gamble rather than feeling like I did
http://vid.imedex.com/pdf/5477/siegel.pdf
If I have read it correctly, you are more at risk of dying with untreated crohns, than with taking 6-MP.
You have to think of your health now, and what damage you can do to your bowels if not in remission (scarring, surgery, increased chance of cancer, malnutrition)
Have you look in diets (paleo, SCD etc) as these may help with crohns. I have done a mixture of taking drugs and diet, and unfortunately I have to do both to feel good. I understand the risks of the drugs I am taking, but I sure feel its worth a gamble rather than feeling like I did
thanks for the reply and the slideshow, unfortunately im on a work computer and will have to wait to check that out, I just have a tendency to be very leery of prescription medication...I really don't even like taking Prilosec for heartburn but since I cant so much as drink a glass of water without get acid reflux I'm stuck on that right now. I tried asacol and it made me feel absolutely terrible. Its just that I am getting over my first flare with just Prilosec, Entocort, and the occasional Tylenol and now my doc doesn't want me to be on entocort to long and hes afraid weaning me off will lead to another worse flare, but since this is my first 1 and I am feeling ok I really wanna try going without medication bf I start a drug that can cause very serious side effects. I feel like I'm 25 and I'm going to have crohn's for the rest of my life so why be in a hurry to take all the medicine in the world now?
Also, I have been on a gluten free, dairy free, caffeine free, alcohol free, red meat free diet with lots of cooked greens, ginger, fish, sweet potatoes, etc and I feel that has helped more than the entocort.
Also, I have been on a gluten free, dairy free, caffeine free, alcohol free, red meat free diet with lots of cooked greens, ginger, fish, sweet potatoes, etc and I feel that has helped more than the entocort.
I just made my first appointment with a new primary care doc and will also be consulting her about all of this. I was just wondering if anybody on the forum had heard of anybody actually getting cancer after starting 6-mp. I think I really disappointed my GI when I told him I didn't wanna take the 6-mp yet....:-(
Don't know of anyone who has developed cancer but I do know how you feel. :ymad: My son recently started on remicade at 18 years old. Made me heartsick, still does but I did ask his GI a similar question to your comment about starting a drug so soon/early. His answer was that by treating the crohns now with the available drugs, we can, hopefully, avoid further crohns complications. If we wait to use the drug later, there's a chance that complications will arise (fistulas, scarring, surgery, etc.) and, at that point, the same drug may not have the same beneficial effect it can have now (ie will no longer be able to avoid surgery).
I understand his GI's point and have read of many who have shown little to no symptoms while active inflammation is doing it's damage, however, can't say I wholeheartedly agreed with jumping into these meds.
Unfortunately, you take risks with the meds but you take on risks as well when you undertreat crohns. Hopefully, you'll find enough information and/or opinions to feel comfortable with your decision. :ghug:
I understand his GI's point and have read of many who have shown little to no symptoms while active inflammation is doing it's damage, however, can't say I wholeheartedly agreed with jumping into these meds.
Unfortunately, you take risks with the meds but you take on risks as well when you undertreat crohns. Hopefully, you'll find enough information and/or opinions to feel comfortable with your decision. :ghug:
whether or not to take 6-mp I feel like is or could be a life altering decision...I was diagnosed with crohn's at the end of June and feel like I have had a lot of decisions to make and negative things to think about since then, it is quite difficult to stay positive.
tesscorm- I really feel for you being the mother of a young adult with crohn's bc I know that my mom worries about me way too much and beyond that she wants really badly to be able to tell me whats best but she really doesn't know whats best at this point and while that isn't her fault at all its not any easier...I feel that being diagnosed with crohn's between 13-18 years old would have to be the most difficult age to handle the diagnosis just being full of hormones and existential teenage angst
tesscorm- I really feel for you being the mother of a young adult with crohn's bc I know that my mom worries about me way too much and beyond that she wants really badly to be able to tell me whats best but she really doesn't know whats best at this point and while that isn't her fault at all its not any easier...I feel that being diagnosed with crohn's between 13-18 years old would have to be the most difficult age to handle the diagnosis just being full of hormones and existential teenage angst
My son's been lucky in that his symptoms have not been severe (made it all the more difficult to see the need for the drugs though! :ybatty and his friends have been completely supportive.
Something you may want to look into is exclusive enteral nutrition (nutritional formula diet only) - no side effects. It was the treatment given to my son at diagnosis (at 16 years old), the positives are that it provides complete nutrition, is anti-inflammatory, provides bowel rest and has healing properties. The downside, usually 6 weeks of no food, formula only. In children (not sure about adult stats), it has comparable success rates at inducing remission as steroids. This very quickly took my son into clinical remission (no symptoms) and he then used enteral nutrition as a maintenance treatment for almost two years (1/2 dose but a regular diet added back in). While the EN controlled his crohns (after it initially healed some of the inflammation, the rest stayed stable), it was not enough to eliminate all the active inflammation - hence the move to remicade.
Most often EN is beneficial at inducing remission but not as successful at maintaining remission - the reintroduction of food seems to bring back the problems.
Let me know if you have any question about EN - there's also a section in the Treatment forum.
Something else you may want to look at is LDN (low dose naltrexone) - it has few side effects and there are a number of members here who have found success with it. Unfortunately, there are only 3 studies of it being used to treat crohns so many GIs are hesitant to use it.
And, yes, very frustrating for us parents to not be able to give our children the right answers! But, I've found learning all I can has given me some control back over this illness, how to best help my son (to the extent I can ) and how it affects my son.
and his friends have been completely supportive.Something you may want to look into is exclusive enteral nutrition (nutritional formula diet only) - no side effects. It was the treatment given to my son at diagnosis (at 16 years old), the positives are that it provides complete nutrition, is anti-inflammatory, provides bowel rest and has healing properties. The downside, usually 6 weeks of no food, formula only. In children (not sure about adult stats), it has comparable success rates at inducing remission as steroids. This very quickly took my son into clinical remission (no symptoms) and he then used enteral nutrition as a maintenance treatment for almost two years (1/2 dose but a regular diet added back in). While the EN controlled his crohns (after it initially healed some of the inflammation, the rest stayed stable), it was not enough to eliminate all the active inflammation - hence the move to remicade.
Most often EN is beneficial at inducing remission but not as successful at maintaining remission - the reintroduction of food seems to bring back the problems.
Let me know if you have any question about EN - there's also a section in the Treatment forum.
Something else you may want to look at is LDN (low dose naltrexone) - it has few side effects and there are a number of members here who have found success with it. Unfortunately, there are only 3 studies of it being used to treat crohns so many GIs are hesitant to use it.
And, yes, very frustrating for us parents to not be able to give our children the right answers!
But, I've found learning all I can has given me some control back over this illness, how to best help my son (to the extent I can ) and how it affects my son. 
Since being a member of the forum I've never heard anyone mention getting cancer or talking about knowing someone who got cancer from taking 6MP.
I took 6MP for well over 15 years and am now taking it again and have never had any side effects from it.
Why take all the harsh meds now? To avoid future complications. Back when I was diagnosed there weren't a lot of treatment options available in the USA at the time so I was treated with whatever medication was coming out at the time. Now days that's called the "bottom up approach" where you work your way up to the stronger meds. The problem with this approach is that certain medications are less effective for Crohn's such as Mesalamine which is topical and wont treat inflammation that Crohn's can cause deeper in the intestinal lining. This link not only talks about that but also talks about which medications may be better suited for Crohn's: http://www.crohnsforum.com/showthread.php?t=50253
Steroids should be used sparingly and short term as they can cause a lot of their own complications like Osteoporosis etc.
Clearly everyone is different but I was diagnosed with Crohn's at age 9 and had my first resection when I was 17. I'm now 31 and having my first flare since my resection. Now I'm playing the, "get the disease under control now before I need another resection" game. Allowing inflammation to build up over time puts us in danger of more surgery, nutrient absorption problems and many other complications.
Resections alone create scar tissue just by being cut and reattached. Scars shrink over time so already having a resection creates a narrowing. Once you've had a resection its common for the disease to become active again at the resection site (when and how bad depends on the individual) causing inflammation to build up around your scar tissue making your narrowing/stricture even more narrow which can lead to partial blockages (which are very uncomfortable) and even a full blockage that may require emergency surgery.
So stronger medications are used to help keep this from happening and to keep inflammation away in general so we have a better chance at absorbing nutrients since both scar tissue and inflammation make it nearly impossible to absorb the nutrients we need (B12 is mainly absorbed in the ileum yet if your disease is affecting your ileum then you're hardly absorbing the B12 which can bring on a deficiency causing a lot of other unwanted symptoms).
While a change in diet is awesome and will be great for your body with or without IBD you may need more to keep the inflammation under control (especially since Entocort can't be used forever). No matter what you decide to do be sure to have regular testing done to make sure that everything is ok on the inside and to at least screen for colon cancer since having Crohn's increases our risk of getting it. Good luck and keep us posted on how you're doing.
I took 6MP for well over 15 years and am now taking it again and have never had any side effects from it.
Why take all the harsh meds now? To avoid future complications. Back when I was diagnosed there weren't a lot of treatment options available in the USA at the time so I was treated with whatever medication was coming out at the time. Now days that's called the "bottom up approach" where you work your way up to the stronger meds. The problem with this approach is that certain medications are less effective for Crohn's such as Mesalamine which is topical and wont treat inflammation that Crohn's can cause deeper in the intestinal lining. This link not only talks about that but also talks about which medications may be better suited for Crohn's: http://www.crohnsforum.com/showthread.php?t=50253
Steroids should be used sparingly and short term as they can cause a lot of their own complications like Osteoporosis etc.
Clearly everyone is different but I was diagnosed with Crohn's at age 9 and had my first resection when I was 17. I'm now 31 and having my first flare since my resection. Now I'm playing the, "get the disease under control now before I need another resection" game. Allowing inflammation to build up over time puts us in danger of more surgery, nutrient absorption problems and many other complications.
Resections alone create scar tissue just by being cut and reattached. Scars shrink over time so already having a resection creates a narrowing. Once you've had a resection its common for the disease to become active again at the resection site (when and how bad depends on the individual) causing inflammation to build up around your scar tissue making your narrowing/stricture even more narrow which can lead to partial blockages (which are very uncomfortable) and even a full blockage that may require emergency surgery.
So stronger medications are used to help keep this from happening and to keep inflammation away in general so we have a better chance at absorbing nutrients since both scar tissue and inflammation make it nearly impossible to absorb the nutrients we need (B12 is mainly absorbed in the ileum yet if your disease is affecting your ileum then you're hardly absorbing the B12 which can bring on a deficiency causing a lot of other unwanted symptoms).
While a change in diet is awesome and will be great for your body with or without IBD you may need more to keep the inflammation under control (especially since Entocort can't be used forever). No matter what you decide to do be sure to have regular testing done to make sure that everything is ok on the inside and to at least screen for colon cancer since having Crohn's increases our risk of getting it. Good luck and keep us posted on how you're doing.
I was just told I'll be taken of 6mp to go remicade! Last time went to Dr said if I go off 6mp what would happen to me. She said dead to my face 3 months tops you would live and would not be pretty. Dr. said my body would be attack big time even on it it as been attacked so no help it would be worse
Its important to have blood work done often to make sure that its not causing any damage. I have blood work done once a month, some people have it done more often and some are told they can go up to 6 months but to be on the safe side once a month is usually better than going 6 months. You can also have blood work to make sure you're within the therapeutic range so you know if you're taking enough for it to be effective but not too much for it to cause damage.
"The maintenance dose of 6-MP tends to be 1-1.5 mg/kg. However, weight based dosing has been shown to correlate poorly with 6-TGN levels which are thought to correlate with the therapeutic affect of 6-MP. As such, 6-TGN levels should be monitored. It has been shown that splitting a dose to morning and evening can help lower 6-MMP levels while maintaining 6-TGN levels." http://www.crohnsforum.com/wiki/6-MP
While needing to be monitored may sound scary, its actually a wonderful thing as you can stop it immediately before it causes major damage.
"The maintenance dose of 6-MP tends to be 1-1.5 mg/kg. However, weight based dosing has been shown to correlate poorly with 6-TGN levels which are thought to correlate with the therapeutic affect of 6-MP. As such, 6-TGN levels should be monitored. It has been shown that splitting a dose to morning and evening can help lower 6-MMP levels while maintaining 6-TGN levels." http://www.crohnsforum.com/wiki/6-MP
While needing to be monitored may sound scary, its actually a wonderful thing as you can stop it immediately before it causes major damage.
Today was a fun day....had a couple bumps pop up on my thigh 2 days ago and they have been getting steady larger, redder, itchier, looks like pus developing and beginning to look like a staph infection I had 1 time, along with this a very hard painful swollen lymph node in my groin area. So call the doc the doc yesterday he's out of town nurse says she's gonna talk to his partner and call me back, but never did. Looks worse today so after work go to minute clinic. She looks at me, says it looks like filiculitis or staph, but she can't treat me bc I'm on Entocort. Tells me a kind of soap to buy and tells me to go to physicians care walk in clinic. I get there fill out the paperwork give them my insurance card, but they wanted $50 to see the doc and only had $15. I asked the girl if I could pay them the rest later she said no, I told her I just didn't want to go to the ER again this summer and told her I had crohn's disease. She says im sorry I don't know what that is.:ymad::ymad:
So after having a brief daydream of myself choking this moron out in the waiting room, I leave and call my GI's answering service. He told me at my last office visit "If you are having pain or any other issues try to talk to us first, maybe we can save you 4 hours of your life and a lot of frustration". So they answer I tell the guy, micheal, the whole situation, he puts me on hold, then tells me they can't help me bc a staph infection isn't related to a GI condition.:voodoo: At this point I had driven all over the place been given the runaround twice, been off work for 3 hours now, had 2 medical professionals refuse me Avery simple antibiotic prescription that would probably solve this problem in a few days.
I proceeded to go absolutely APE SHIT on Micheal for about 5 minute without taking a breath. He asked me my name, birthdate, phone #, hung up and a doctor called me 3 minutes later. He said there would be an antibiotic waiting for me at the pharmacy in the morning.
WHAT THE HELL HAS HAPPENED TO HEALTHCARE IN THE US!!!!
So after having a brief daydream of myself choking this moron out in the waiting room, I leave and call my GI's answering service. He told me at my last office visit "If you are having pain or any other issues try to talk to us first, maybe we can save you 4 hours of your life and a lot of frustration". So they answer I tell the guy, micheal, the whole situation, he puts me on hold, then tells me they can't help me bc a staph infection isn't related to a GI condition.:voodoo: At this point I had driven all over the place been given the runaround twice, been off work for 3 hours now, had 2 medical professionals refuse me Avery simple antibiotic prescription that would probably solve this problem in a few days.
I proceeded to go absolutely APE SHIT on Micheal for about 5 minute without taking a breath. He asked me my name, birthdate, phone #, hung up and a doctor called me 3 minutes later. He said there would be an antibiotic waiting for me at the pharmacy in the morning.
WHAT THE HELL HAS HAPPENED TO HEALTHCARE IN THE US!!!!
that rant was off topic...but I am starting to consider the 6-mp more. However I want to be thoroughly checked for all kinds of cancer bc I have had strange swollen lymph nodes bf...had 1 in my neck that wouldn't go away a few years ago that my ENT said would go away when I had my tonsils out, but he did a needle biopsy on it and it came back fine. Irs still larger than the one on my right. I feel like if I start taking 6-mp I'm going to freak anytime I have a bump, a bad headache, etc. Like that's all I'll ever think about...
I'm sorry you went through all that.
When I started Remicade I got swollen lymph nodes and a bacterial infection in both breasts and none of my doctors could explain it other than Remicade being the cause so luckily we all agreed to stop it and switch to something else. Now when I feel a lump somewhere I get concerned that the new med I'm on (Methotrexate) is causing it and when I get it checked out its nothing and I never felt the lump again. Just saying that I understand how one bad experience can make you freak out over any little thing. That only happened the first month that I took Methotrexate though (where I freaked out about every little thing). Since then I haven't had any issues and no longer worry.
If you do have any side effects though then you can always contact your doctor right away and see what they say.
When I started Remicade I got swollen lymph nodes and a bacterial infection in both breasts and none of my doctors could explain it other than Remicade being the cause so luckily we all agreed to stop it and switch to something else. Now when I feel a lump somewhere I get concerned that the new med I'm on (Methotrexate) is causing it and when I get it checked out its nothing and I never felt the lump again. Just saying that I understand how one bad experience can make you freak out over any little thing. That only happened the first month that I took Methotrexate though (where I freaked out about every little thing). Since then I haven't had any issues and no longer worry.
If you do have any side effects though then you can always contact your doctor right away and see what they say.
My son did use an NG (naso-gastric) tube overnight (inserted/removed daily) but you can drink the shakes as well. It seems the most effective formulas are the semi-elemental or elemental formulas, these are more broken down (sorry, don't know the details but I believe it's the proteins that are more broken down), by being broken down, they are more easily absorbed and take the least effort by small bowel to absorb/digest. Unfortunately, the more broken down, the more unpalatable. My son's was not drinkable, hence the tube - his formula was Tolerex by Nestle. However, Peptamin, Modulen and e028 (??) are drinkable and, I believe, semi-elemental and they are regularly used for EN. I have also seen Boost and Ensure used for EN (although these are not semi- or elemental formulas).
You do not need a prescription for these formulas, however, I don't believe insurance will cover the cost without a prescription. I've also heard of situations where the insurance will pay only if it is ingested by tube, even though it is a drinkable formula?? In my case, my son did have a prescription but insurance did not cover it, however, a regional medical agency did cover the cost. You can buy the formulas at grocery or drug stores or online.
In addition to the info in the treatment EN forum, there are links to a couple of threads in the parents forum with lots of info (lots of the info deals with kids' issue but there's lot of general EN info as well):
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?p=694576#post694576
I've also never heard of EN having a conflict with any medication.
And, sorry about the day you had! OMG, I can imagine how frustrated you were!! :ymad:
My son's was not drinkable, hence the tube - his formula was Tolerex by Nestle. However, Peptamin, Modulen and e028 (??) are drinkable and, I believe, semi-elemental and they are regularly used for EN. I have also seen Boost and Ensure used for EN (although these are not semi- or elemental formulas).You do not need a prescription for these formulas, however, I don't believe insurance will cover the cost without a prescription. I've also heard of situations where the insurance will pay only if it is ingested by tube, even though it is a drinkable formula?? In my case, my son did have a prescription but insurance did not cover it, however, a regional medical agency did cover the cost. You can buy the formulas at grocery or drug stores or online.
In addition to the info in the treatment EN forum, there are links to a couple of threads in the parents forum with lots of info (lots of the info deals with kids' issue but there's lot of general EN info as well):
http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?p=694576#post694576
I've also never heard of EN having a conflict with any medication.
And, sorry about the day you had! OMG, I can imagine how frustrated you were!! :ymad:
decided im not taking 6-mp...going to try LDN (if I can get anybody to prescribe it) along with enteral nutrition therapy bc in the end my docs goal in prescribing 6-mp is to provide me w/ best quality of life and I'll be miserable all the time knowing I'm taking a chemo drug so I determined I'd rather just be in physical pain and risk future surgery than be in physical pain and extreme mental anguish constantly worrying what my meds are doing to my body..
found this review on WebMD today....
Condition: Inflammatory Bowel Disease
1/17/2012 3:12:11 PM
Reviewer: Teetybird, 45-54 Female on Treatment for 2 to less than 5 years (Patient)
Effectiveness:
Current Rating: 5
Ease of Use:
Current Rating: 5
Satisfaction:
Current Rating: 2
Comment:
Used mercaptopurine for 3 years. Best 3 years of the last awful 27 years I have had. However, I am now going through chemo for non hodgekins lymphoma, a side effect of mercaptopurine. Wish I had not taken the drug now.
....
Condition: Inflammatory Bowel Disease
1/17/2012 3:12:11 PM
Reviewer: Teetybird, 45-54 Female on Treatment for 2 to less than 5 years (Patient)
Effectiveness:
Current Rating: 5
Ease of Use:
Current Rating: 5
Satisfaction:
Current Rating: 2
Comment:
Used mercaptopurine for 3 years. Best 3 years of the last awful 27 years I have had. However, I am now going through chemo for non hodgekins lymphoma, a side effect of mercaptopurine. Wish I had not taken the drug now.
....
- Location
- St. Louis, MO
I'm catching up on this thread due to scouring the forum for treatment info. My 16 year old daughter just began Imuran this week
How is ENT and LDN going?
How is ENT and LDN going?
greypup-Hey just saw this...its going ok right now. I'm using LDN, medical marijuana, and probiotics as of now and am doing a lot of juicing and smoothies and only having 1 solid meal a day and no gluten, no dairy, no red meat, no refined sugar. I'm feeling pretty good recently, not having to many symptoms. My stomach is pretty noisy these days and if I stray from my diet very much I just have less pleasant BM's, but other than that I'm ok. My GI doc was very surprised also since he told me flat out that he didnt think LDN would work and that I'm wasting money on probiotics. I also didnt tell him I was using marijuana and honestly I think that is helping as much as anything but I think that it helps me a lot because symptoms seem to be closely tied to mental stress for me and the cannabis wipes that right out. Altogether, I'm still really afraid of the 6-mp, but some people have had great luck with it and if things got bad enough for me again I would consider it, but hopefully this treatment regime keeps working. I really hope all is well with you and yours...
- Location
- St. Louis, MO
I'm glad that you've found a therapy that holds off the bigger meds. Hang in there with the lifestyle changes. Seems worth it, if they bring you better health!!!