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Crohn's Disease Forum » Your Story » Crohn's Remicade Humira CAUSE LYMPHOMA CANCER


 
05-27-2011, 11:06 AM   #1
howard1945
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Crohn's Remicade Humira CAUSE LYMPHOMA CANCER

Hi- This is aboput my adult daughter who developed lymphoma from we suspect Remicade & Humira...I (66 yo male) have had Crohn's for over 50 years, for the last 35 have been in remission. She took Remicade several times in 1998 when it was first FDA approved. It did little good. She also took Humira in 2005-2006 and it worked for about 2 years. In 2007 wemoved to NY and she tried Remicade again, DOUBLE strength. About 2 years later she had out of the blue COMPLETE kidney faiure requiring dialysis and finally a diagnosis of lymphoma which was a symptom. Since this started 3 months ago she is now in REMISSION.

My point is simple, anti TNF drugs CAN give you cancer. The messages are full of similar horror stories.

Best of luck!!
05-27-2011, 02:47 PM   #2
xJillx
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Hi Howard. I am so sorry about your daughter. And you are right, TNF drugs can cause cancer. We have all heard/read the side effects. However, what option does someone suffering with active Crohn's have? Untreated active Crohn's causes cancer, as well, as well as many other obvious complications.

I appreciate your warning, and I am so, so sorry to hear about your daughter's diagnosis. But please don't scare people when they may have no other option to get well then to take TNF drugs.
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I am still sick and so confused...
05-27-2011, 03:03 PM   #3
beth
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Yup it can cause lymphoma (why the capitals, you trying to needlessly scare people?), so can lots of other useful drugs. What are we supposed to do, whither and die... Or should we all succumb to the expensive charlatans and quacks with unproven 'medicines' that are really no better than eye of newt and toe of frog?
05-27-2011, 04:13 PM   #4
howard1945
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Hi All- She had 20 years of prednisone (rounded face, Dr Jeckle/Mr Hyde etc), 6MP, methotrexate, every other med (Humira, Cimzia), dehydration, every diet (no carbs, no simple sugars) ad nauseum, was hospitalized 10 times but was never before in danger of losing her life. Worked thru it. I am trying to enlighten patients to realize these anti-TNF meds have a black box label for a reason....I don't blame people for trying/ using these drugs as life with Crohn's can be a nightmare. But understand the risks, be aware if something feels wrong even years after taking anti-TNF drugs. Good luck to All!
05-27-2011, 05:16 PM   #5
beth
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(insert your favourite sarcastic rant for people who come here to warn us about x, or sell snake oil, or....a multitude of crap you really don't need)
See I'm being kind. I'm in the middle of my Humira injection. I'm about to have cake. I like cake. Cake is nice. It's my treat. Then I'm going to bed because I like sleeping after my injection. Tomorrow is another day and a nice person will take the opportunity to write their story properly and participate in the forum like a nice person and this thread will be then forgotten about.
05-27-2011, 05:32 PM   #6
DustyKat
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Hi Howard,

I think you are preaching to the converted here. I don't think I would be wrong in saying that every single person that frequents this forum knows what the side effects of the these drugs are and blatantly put it out there is rubbing salt into the wounds.

I hate the fact that my children are taking Imuran but what choice do I have? They both have Fistulising Ileal Crohns that left untreated would invariably kill them. So I am between the devil and the deep blue sea. I either kill them with a 100% success rate by doing nothing or take my chances with a drug that will have a slim risk of them developing cancer. Nice choice ay?

I will take all the luck I can get, so thanks!

Dusty.
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05-27-2011, 06:05 PM   #7
itsMeFred
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She had 20 years of prednisone (rounded face, Dr Jeckle/Mr Hyde etc), 6MP, methotrexate, every other med (Humira, Cimzia), dehydration, every diet (no carbs, no simple sugars) ad nauseum, was hospitalized 10 times but was never before in danger of losing her life. Worked thru it.
So why didn't she stay with the above? Or did they lose efficacy?
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05-27-2011, 06:18 PM   #8
vickyhunter
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I appreciate what you're trying to say, but like the other people have said, we've heard it all before. If I wasn't on medicine I either wouldn't be here/be bed ridden, what kind of life is that?!? I'll take my chances with with my medicine! What other option do we have apart from to get on with our lives?
I hope your daughter gets better, sounds like she's had/having a hard time
xxxxx
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05-28-2011, 06:32 AM   #9
Astra
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Hiya Howard

Thanks for the warning, but we already know the risks, and all meds pose some risks, and faced with 'Pred or Dead'? I know what I'd choose! Same for the biologics, when one has exhausted all other avenues, one has to take risks.
In order to reduce any more backlash from your over generalised statement, how about you change CAN to MAY, therefore highlighting that there may be a risk, and not that it defo can!
I'm sorry your daughter is going through this difficult time, cancer is a very emotional thing to go thro.
xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

05-28-2011, 11:33 AM   #10
Grant
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I think we need to cut Howard some slack. His daughter has got cancer & that in itself is extremely upsetting after all the years of Crohns. Think its only natural in a distressed state to point the finger so to speak. As others have said I'll take my chances with the meds. Sincerely hope your daughter makes a full recovery Howard.
Rgds
Grant


1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
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05-28-2011, 11:34 AM   #11
howard1945
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Hi All- Remicade never worked. Humira worked well for 2 years. It than stopped working also. She finally had her entire colon removed (1st operation laproscopically $20000 each of 2 surgeons) and reattached (2nd operation with internal pouch) at Mt Sinai NY. She had indeterminate (by specific test) Crohns colitis with no involvement of the illium. Her colon looked like a pepperoni pizza upon flareup. Besides a lot of lomotil, metamucil she does well.

BTW steroids are wonderful drugs but can cause cataracs (I had them removed at 58}. They also deteriorate your bones,{ especially spine, hips}bad for females. It is worth early intervention to treat with calcium, D3 et al to keep them strong.
05-28-2011, 11:52 AM   #12
itsMeFred
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So you're saying she was out of options?
05-28-2011, 12:53 PM   #13
David
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Welcome Howard. Thank you for sharing your daughter's story. I'm sorry she and your family have had to go through such turmoil, it has no doubt been horrific. I hope your daughter's health continues to improve.
06-08-2011, 03:23 PM   #14
MuffinMansMom
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Sorry to hear about your daughter. It was very difficult for me to put my son on these meds as well, but he is the one that finally told me, "mom we have to do something. I can't go on like this. If I get cancer then that is what was suppose to happen, but at least I can live a normal as possible life until then." It broke my heart, but i gave in because at the end of the day this is HIS disease and only he knows what he truly goes through on a daily basis. He may be only 13 (diagnosed at 9) but he is wise beyond his years.
06-08-2011, 07:13 PM   #15
ameslouise
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Hi Howard and welcome!

I am so, so, so sorry to hear about your daughters struggles with Crohns and her subsequent cancer dx. That is a lot for one person to handle. As a parent, regardless of your child's age, it must be heartbreaking to go thru all of this with her.

I hope she has a good treatment plan for the cancer and responds well to treatments.

As patients ourselves, it is scary to know about the risks of some drugs and absolutely terrifying to hear about the reality of them. We all have to weigh how much risk we are willing to take and if we feel the risk is worth it.

Good luck to your daughter. -Amy
06-08-2011, 07:44 PM   #16
raeleene7
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Hiya Howard! First off I am so sorry about not only your daughter, but also for your suffering with crohns. Truly. Its a horrific disease that isn't too picky about who it decides to attack, and to what extent. Ugh! pretty much expresses how I feel about all the crap (pun intended-lol) that goes along with having crohns.
Second, for me, you my dear are singing to the choir! I have to say, I was a good little patient and took all the treatments my doctors told me to. Hey, they were and are trying to kick crohns butt (pun intended again! lol), to no avail though! I just wanted my life back. I just wanted to be active in my children's lives. I just wanted to get better. We all do. So as much as I read, looked up, investigated all the meds my docs put me on, BEFORE they put me on them, I still took them all, just hoping that I could squeeze out some quality of life time, ya know?
Nothing worked, thus far. I try really really hard to hope that none of the meds that I took will catch up with me later. Until then I just live today, as fully as I can. I'm really sorry that some of us crohnies are a little grouchy, or touchy about the subject you shared about. I think its because its scary, to realize that the meds we've taken or are taking can kill us. Its that double edged sword. Damned if we do and damned if we don't. So we make the best decisions we can, and hope for the best. We are all scared. We are all fighting the same good fight. We are all in this together. We all have crohns, but crohns doesn't have us.
You hang in there! Tell your daughter to hang in there! Live each day as fully as possible. Love as much as possible. Remember, you aren't alone. Please take care of yourself and your daughter! Sending lots of hugs ya'lls way!
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Crohns- Severe
Date diagnosed: 06/2006
Current Gastro Doctor: University of Virginia Med. Center
Surgeries: 9
Meds previously taken: Prednisone, imuran, metho, remicade, cimzia, humira, pentasa, prilosec, on and on and on. (tried all meds to date- except tysabri!)
Trials: 6
Previous Nutrient Supplements: Insure, oil, B-12 shots, prescription D and Calcium, etc.
Current Meds: Prilosec
Current Nutrient Supplements: Juice Plus, Insure, biotin (helps with my hair loss)
Recommends: Zumba
06-08-2011, 07:55 PM   #17
Mr. Izzy
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I am so sorry to hear about your daughters unfortunate news. It is good to hear that she is doing alright at the moment though.

Before you wrote thread, did you ever stop to think that your guessing (cause thats what it is) might be wrong? It might not have been the remicade. I wouldn't say it was the remicade judging by the little evidence you've given us. If you are wrong, then you have just scared all these sick people into not getting the medication they need, if fear of the 1% chance of getting lymphoma. Lymphoma is definitely nothing i was wish on my worse enemy. My heart goes out to your daughter. I can't even imagine. However not treating your crohns, can be deadly too. Remicade has saved many lives. I hope this thread doesn't detour anyone from trying it when they need a life line.


I hope you stick around, there is a lot of invaluble information on these boads about our disease.

Last edited by Mr. Izzy; 06-08-2011 at 10:11 PM.
06-08-2011, 08:34 PM   #18
raeleene7
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Actually, guessing has nothing to do with it. Its a fact that it can cause lymphoma, as well as a number of other things. The only difference is that its such a small percentage that actually gets it that its down played.
Honestly I think Howard is just venting, and is scared for himself and his daughter, as well as any other person who is seeking treatment. Personally I have never been more scared than when my doctor told me I had crohns and that there was no cure for it.
There are so many of the meds that we take to treat the symptoms of crohns, but its ridiculously funny that some of the side effects or "may cause's" is worse than the disease itself. LOL!
Hey, so much prednisone has caused me to have osteoporosis. Its a fact. Do I tell any one not to take it? Nope. Because it saved my life several times.
Just saying that howard is sharing about what he's going through. Maybe some support would be nice. So many messages seems to be laced with "oh don't scare us or anyone", etc. How about , hey thanks howard for the info and the reminder that we have to be mindful of what we put into our bodies. We each have a choice, we make it and we move on. Being aware of the possibility of a med having a bad side effect I think is a good thing. I'm not afraid of knowledge, I am afraid of the unknown though.
Thanks everyone for sharing where your at, what you think and how you feel! Thank goodness we have this forum to share our experience, strength and hope!
06-08-2011, 10:02 PM   #19
Mr. Izzy
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Actually, guessing has nothing to do with it. Its a fact that it can cause lymphoma, as well as a number of other things. The only difference is that its such a small percentage that actually gets it that its down played.
Honestly I think Howard is just venting, and is scared for himself and his daughter, as well as any other person who is seeking treatment. Personally I have never been more scared than when my doctor told me I had crohns and that there was no cure for it.
There are so many of the meds that we take to treat the symptoms of crohns, but its ridiculously funny that some of the side effects or "may cause's" is worse than the disease itself. LOL!
Hey, so much prednisone has caused me to have osteoporosis. Its a fact. Do I tell any one not to take it? Nope. Because it saved my life several times.
Just saying that howard is sharing about what he's going through. Maybe some support would be nice. So many messages seems to be laced with "oh don't scare us or anyone", etc. How about , hey thanks howard for the info and the reminder that we have to be mindful of what we put into our bodies. We each have a choice, we make it and we move on. Being aware of the possibility of a med having a bad side effect I think is a good thing. I'm not afraid of knowledge, I am afraid of the unknown though.
Thanks everyone for sharing where your at, what you think and how you feel! Thank goodness we have this forum to share our experience, strength and hope!
Just replying to the guessing comment since i was singled out -

It would be classified as an educated guess. An educated guess that has 1% chance of being right. No that is not "down played"...that is the actual numbers. It is a 1% chance and a bit more if taken in with 6mp. Please lets not try act as the board defender, or play my response to something it was not just for attention. I support him and his daughter in every way. That doesnt mean that I am not entitled to my own opinion. In hoping that she continues do well and staying in remission shows support. Saying that I hope he sticks around also shows support. So please... don't single me out again with false accusations.
06-17-2011, 08:23 PM   #20
Mr. Izzy
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Looks like they're saying remicade does not cause cancer in the latest studies published.

http://www.sciencedaily.com/releases...0527075911.htm

Last edited by Mr. Izzy; 06-17-2011 at 09:02 PM.
06-17-2011, 10:41 PM   #21
Crohn's Mom
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Is that study only in RA patients or Crohn's patients as well ?
Very interesting...
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06-17-2011, 10:42 PM   #22
Tesscorm
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I wasn't going to post a reply as I'm still so new here and don't have much experience in dealing with all these issues yet. However, this post did upset me. We all know, or in my case, are quickly learning of the risks and side effects of these medications. Howard, I truly am very sorry to hear about your daughter and her diagnosis. After suffering with Crohns for so long, it is completely unfair that your family has to find the strength to fight another battle and my prayers are with you. But I think your subject line and use of capitals was not helpful to anyone. I know it took me 10 steps back in my acceptance of this disease that my son is now facing.

There are lots of things that cause cancer. We all know that eating healthy every day and exercising regularly reduces the risk of cancer but, how many of us, with or without Crohn's live by these guidelines? There are many places in the world that have lower rates of cancer than Canada, should I move my family or willingly accept the risk that comes with living in Canada? Crohn's increases the risk of colon cancer, however, my son will be screened and watched much more carefully than the average person, how does this compare to the average person who doesn't screen for colon cancer as often as they should? I actually have acquaintances' whose daughter is 19, currently undergoing treatment for lymphoma and does not have Crohn's and, I imagine, has never used Remicade or Humira.

Perhaps I am still in 'some' denial, however, I prefer to focus on the hope that my son will be able to deal with Crohn's relatively successfully, with or without medication, rather than focus on the potential harm that every decision I make will do to him in the future.
06-18-2011, 03:43 AM   #23
techgirl
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Reading everyone else's comments makes me feel a little less alone. I'm 23 and I've been flaring for 5 years straight. Great family support, dream job, but in so much pain all the time. It's so restrictive trying to live a normal life - diet, activities, relationships, how are you guys doing any of it?

Are there any 'treatments' you guys would advise against trying because of the side effects? Does surgery work?

Thanks everyone.
06-18-2011, 09:16 AM   #24
Naddie4589
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I would have to agree with tesscorm up there, she makes a valid and good point, soo many things in this world cause cancer, even turning on the AC before rolling down your windows first to let all the bad stuff called benzine out but sometimes you have to take the risk. I was so hesitant to put my daughter on TNF blockers, and especially because i had heard that immuran along with TNF blockers have an even higher percentage to cause cancer. Her doctor took her off of immuran and after 3 months after it had completely dissapeared from her body, he put her on Humira. Are we terrified of the cancer risk? yes we are. but can i watch my daughter suffer and miss out on life while she is still young? i don't think anyone could. I know how upset you are about your daughter, but if we all listened to that 1%cancer risk some of the people in remission right now wouldn't be without those TNF blockers. And this should not discourage people from trying them, who knows it could be their miracle drug! I certainlly see a difference in my daughter after starting them. Again i am so sorry about your daughter and i pray that she has a quick and speedy full recovery
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06-11-2013, 10:26 PM   #25
Motherof1
 
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This is for Howard. My brother has had Crohn's disease since he was 20. He has been getting Remicade for 10 years and it is the only medication to put him in remission. He thought it was a miracle drug. He is 55 and today he was diagnosed with lymphoma. It has already spread to his stomach, kidney and lungs. Swollen lymph nodes only started 3 weeks ago, pain on and off started 2 weeks ago. Endoscopy shows cancer. His gastroenterologist at Hershey medical Center is absolutely convinced it was brought on by the Remicade. So everyone here can stand by their choice to take it, enjoy the years it gives them, but I promise you if they become a cancer statistic (and some surely will) they will reconsider their choice. It's easy to say things like it is a rare side effect, or only affects 1% with cancer (which is open for serious debate) but when you are that 1 person, statistics are meaningless. In my humble opinion, those on Remicade are playing Russian roulette. I am certainly not criticizing their decision, but as I watch my brother writhing in agony from the cancer pain, watching the narcotics have no effect, I strongly suspect Remicade won't be around another decade.
06-14-2013, 10:38 AM   #26
tommoylan
 
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Broken-hearted from all the sad stories. What are not mentioned are the three "miracle cures", and I don't use that term sarcastically, that are currently available--1.)Enternal foods up to and including elemental foods that are so sophisticated they are made up of amino acids rather than protein. 80-85% reported remission, 2.) Helminthic therapy, in short, worms, 85% reported remission, and now for the latest, 3.) Cannabis, 50% reported remission (small study, bigger ones coming).

I'm no mathematician, but I believe if you add the odds up on all those options you have 95%+ chance of remission.

There are certainly some costs involved, unfortunately mostly to be born personally at this point, and in the case of cannabis, the sacrifice of some mental clarity that some enjoy and others hate. But I am finding, at least in the case of my young GF, who has Crohns pretty severely, the main obstacle is just the force of habit, particularly that of enjoying whole foods. If sipping icky supplements would save the rest of my intestinal track, prevent cancer, and rid me from pain forever, I think I would try it!

It might not be my place as a non-sufferer to pipe in here, but I wish all of the people I read in this forum who are at the end of their ropes and suffering from the damage and/or non-effectiveness of allopathic medicine would TRY those three before they simply continue with the toxic regimes proposed by their doctors. I see great hope here, and am so sad for the despair people have of ever getting well. I haven't posted 10 posts yet, so I can't post links, but there are lots of references to these even in this forum, and certainly on Wikipedia and other internet sources.

I am not a conspiracy theorist, but my GF, while getting to see all kinds of specialists, has not been referred to a nutritionist yet. The bias of doctors, I believe, is on the side of operations and expensive drugs. Can you blame them? Would YOU really want to lose half your patients to a little worm, Ensure or its cousins, and weed. No, it can't be that easy, Mrs. Jones. That's pseudo-science. Let's try a new combination of toxins. And failing that, more surgeries and surgeries for the complications of the previous surgeries. Keep coming back and I keep getting fees. Sorry, I know ALL doctors aren't like that. But doctors don't get paid from well people.

It is not in the interest of Big Pharma, either, for it to be widely know that some little parasites that could be had for $200 per two-year dosage, if they were legal in the country, could completely cure millions of people suffering from Crohns who are currently paying either personally, or thru government programs, thru the NOSE for expensive, long-term, multi-drug treatments.

Last edited by tommoylan; 06-14-2013 at 10:54 AM.
06-14-2013, 11:16 AM   #27
Motherof1
 
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My brother wishes marijuana was legal in PA. He often says he may move to New Jersey because it is legal there.
06-27-2013, 02:07 PM   #28
jwfoise
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1.)Enternal foods up to and including elemental foods that are so sophisticated they are made up of amino acids rather than protein.
That makes no sense. Proteins are made of amino acids. If it is a protein, then it is made of amino acids - it is not an either/or.
06-28-2013, 01:33 PM   #29
Grant
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Broken-hearted from all the sad stories. What are not mentioned are the three "miracle cures", and I don't use that term sarcastically, that are currently available--1.)Enternal foods up to and including elemental foods that are so sophisticated they are made up of amino acids rather than protein. 80-85% reported remission, 2.) Helminthic therapy, in short, worms, 85% reported remission, and now for the latest, 3.) Cannabis, 50% reported remission (small study, bigger ones coming).

I'm no mathematician, but I believe if you add the odds up on all those options you have 95%+ chance of remission.

There are certainly some costs involved, unfortunately mostly to be born personally at this point, and in the case of cannabis, the sacrifice of some mental clarity that some enjoy and others hate. But I am finding, at least in the case of my young GF, who has Crohns pretty severely, the main obstacle is just the force of habit, particularly that of enjoying whole foods. If sipping icky supplements would save the rest of my intestinal track, prevent cancer, and rid me from pain forever, I think I would try it!

It might not be my place as a non-sufferer to pipe in here, but I wish all of the people I read in this forum who are at the end of their ropes and suffering from the damage and/or non-effectiveness of allopathic medicine would TRY those three before they simply continue with the toxic regimes proposed by their doctors. I see great hope here, and am so sad for the despair people have of ever getting well. I haven't posted 10 posts yet, so I can't post links, but there are lots of references to these even in this forum, and certainly on Wikipedia and other internet sources.

I am not a conspiracy theorist, but my GF, while getting to see all kinds of specialists, has not been referred to a nutritionist yet. The bias of doctors, I believe, is on the side of operations and expensive drugs. Can you blame them? Would YOU really want to lose half your patients to a little worm, Ensure or its cousins, and weed. No, it can't be that easy, Mrs. Jones. That's pseudo-science. Let's try a new combination of toxins. And failing that, more surgeries and surgeries for the complications of the previous surgeries. Keep coming back and I keep getting fees. Sorry, I know ALL doctors aren't like that. But doctors don't get paid from well people.

It is not in the interest of Big Pharma, either, for it to be widely know that some little parasites that could be had for $200 per two-year dosage, if they were legal in the country, could completely cure millions of people suffering from Crohns who are currently paying either personally, or thru government programs, thru the NOSE for expensive, long-term, multi-drug treatments.
Sorry Tommy but thats not the way it works with the NHS in UK. I hate to think what my treatment runs into with regards cost. 4 major surgeries & umpteen colonoscopies, small bowel enemas, 3 visits to A&E with obstructions & many overnight hospital stays. Trust me that runs up a hefty bill. The reason I'm on Humira is to stop all that happening again & hopefully keep me away from the NHS & in doing so it saves them money.
Rgds
Grant
05-08-2014, 09:26 PM   #30
Narda
 
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Is the Lymphoma that is initiated by the Remicade treatable? What is the treatment? I'm going in for a blood test because my lymphocytes are elevated? Been on Remicade for 12 years.
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