Humira and Cancer!
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DustyKat
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Hey Sabin,
Here is an article that should interest you. It discusses the risks associated with varying treatments for IBD...
http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf
Dusty. xxx
Here is an article that should interest you. It discusses the risks associated with varying treatments for IBD...
http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf
Dusty. xxx
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Thanks for the link!
It really calmed me down, especially this bit:
"So we do have to put things in perspective here. The risk of developing
lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with these medications, is only about 4 people out of 10,000 people who take it. To keep that in perspective, on no medications, just a random person walking around the street in the United States has approximately a risk of 2 people out of 10,000. So although if you were writing a news article, you might write that these medications double your risk of cancer, really what we’re talking about is 2 people out of 10,000 and increasing that to 4 people out of 10,000."
So in reality the chances of getting it doubles but if you turn it to percents it would be less than 1% bigger risk than a normal healthy person getting it.
I can live with that.
It really calmed me down, especially this bit:
"So we do have to put things in perspective here. The risk of developing
lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with these medications, is only about 4 people out of 10,000 people who take it. To keep that in perspective, on no medications, just a random person walking around the street in the United States has approximately a risk of 2 people out of 10,000. So although if you were writing a news article, you might write that these medications double your risk of cancer, really what we’re talking about is 2 people out of 10,000 and increasing that to 4 people out of 10,000."
So in reality the chances of getting it doubles but if you turn it to percents it would be less than 1% bigger risk than a normal healthy person getting it.
I can live with that.
stats
As I read it the 2 in 10000 is an annual risk. So, multiply by number of years on the drug. Still a very small number though!
Update: actually I think you could treat it as a Bernoulli trial and use P(N <= n) = 1 - q^n where n is the number of years you take it and q is 1-2/10000. But that assumes it's independent events. Hell, it's small anyway!
As I read it the 2 in 10000 is an annual risk. So, multiply by number of years on the drug. Still a very small number though!
Update: actually I think you could treat it as a Bernoulli trial and use P(N <= n) = 1 - q^n where n is the number of years you take it and q is 1-2/10000. But that assumes it's independent events. Hell, it's small anyway!
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My rheumatologist told me they actually see this in people with rheumatoid arthritis and that these people have a higher risk of getting these types of cancers to begin with. She said at this point they are not even sure if the medication actually increases the risk.
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From what I've been reading, it seems like the risk is increased on combination therapy (ie - including a biologic [Infliximab predominately from my readings] combined with steroids or an immunosuppressant, like Imuran), and for young males. And then there is the real nasty cancer, called "hepatosplenic lymphoma", which is supposedly usually aggressive and quickly fatal. And I guess that type is mostly found in young males, but I'm not sure how young.
I was reading one of Dr. Sandborn's reports (Mayo Clinic), as he does lots of this research, and the abstract states: "...The risk of infection may be increased by combination therapy with steroids and/or immunomodulators. There is a specific risk of the rare γ δ hepatosplenic lymphoma that appears to have a predeliction for young males on combination therapy."
The question of whether to do combination therapy is another one to figure out. From what I've read, combination therapy is aimed at increasing the odds of prolonging remission & not losing response. And if I understand the literature correctly, I believe that what it indicates is that it is only advocated to do combination therapy for patients who start both the immunomodulator & the biologic simultaneously. They call this being immunomodulator-naive (never having previously gone on immunomodulator monotherapy before).
Here's a link for a report entitled: The London Position Statement of the World Congress
of Gastroenterology on Biological Therapy for IBD
With the European Crohn ’ s and Colitis Organization:
When to Start, When to Stop, Which Drug to
Choose, and How to Predict Response ?
(well, I guess I'm not permitted to post the link until I have at least 10 posts. If you google "wcog statement on biologics", it's the second url that comes up).
Under sub-heading 1.7 I note, "...because an FDA analysis identified 48 cases of malignancy in this population. Half of these were lymphomas and 88% had been treated with concomitant immunomodulators. Potential benefits of anti-TNF therapy must be balanced against the potential risks of malignancy..."
Under sub-heading 1.16, I'm reading this to say that IFX/AZT may be better than IFX alone for inducing remission. And seems to say that after 12 months, perhaps get off of AZT since there is insufficient data to recommend continuing to risk infection (not sure if this also means malignancy) per combination therapy beyond 1 year. At the end it says that they're not sure whether combination therapy using other biologics would have the same result as IFX or not, so I guess it's hard to know whether combo HUM/AZT would be advisable or not. There may be other research that better clarifies this, but if so, I have yet to find it.
"When starting biological therapy in patients with CD naïve to thiopurines the combination of IFX and AZA is better for induction of remission and mucosal healing over 1 year [EL 1b]. The optimal maintenance strategy after this induction regimen and whether the same applies to other agents remains unknown.
Only patients with an elevated CRP or mucosal lesions at colonoscopy benefited from combining IFX and AZA in the Study Of biologic and immunomodulator Naive patients In Crohn's disease (SONIC) trial (49). AZA may influence IFX immunogenicity, but other reasons are possible (66). The optimal strategy after 12 months’ combination therapy remains unknown, but reducing treatment towards monotherapy may be appropriate, simply to reduce infection risks (17). Whether combination therapy could improve outcomes from other anti-TNF agents is unknown."
I'm trying to figure this stuff out myself as well. My new GI postulated that since it's been several years since I've taken Imuran, perhaps I'm now AZT-naive "again".
I was reading one of Dr. Sandborn's reports (Mayo Clinic), as he does lots of this research, and the abstract states: "...The risk of infection may be increased by combination therapy with steroids and/or immunomodulators. There is a specific risk of the rare γ δ hepatosplenic lymphoma that appears to have a predeliction for young males on combination therapy."
The question of whether to do combination therapy is another one to figure out. From what I've read, combination therapy is aimed at increasing the odds of prolonging remission & not losing response. And if I understand the literature correctly, I believe that what it indicates is that it is only advocated to do combination therapy for patients who start both the immunomodulator & the biologic simultaneously. They call this being immunomodulator-naive (never having previously gone on immunomodulator monotherapy before).
Here's a link for a report entitled: The London Position Statement of the World Congress
of Gastroenterology on Biological Therapy for IBD
With the European Crohn ’ s and Colitis Organization:
When to Start, When to Stop, Which Drug to
Choose, and How to Predict Response ?
(well, I guess I'm not permitted to post the link until I have at least 10 posts. If you google "wcog statement on biologics", it's the second url that comes up).
Under sub-heading 1.7 I note, "...because an FDA analysis identified 48 cases of malignancy in this population. Half of these were lymphomas and 88% had been treated with concomitant immunomodulators. Potential benefits of anti-TNF therapy must be balanced against the potential risks of malignancy..."
Under sub-heading 1.16, I'm reading this to say that IFX/AZT may be better than IFX alone for inducing remission. And seems to say that after 12 months, perhaps get off of AZT since there is insufficient data to recommend continuing to risk infection (not sure if this also means malignancy) per combination therapy beyond 1 year. At the end it says that they're not sure whether combination therapy using other biologics would have the same result as IFX or not, so I guess it's hard to know whether combo HUM/AZT would be advisable or not. There may be other research that better clarifies this, but if so, I have yet to find it.
"When starting biological therapy in patients with CD naïve to thiopurines the combination of IFX and AZA is better for induction of remission and mucosal healing over 1 year [EL 1b]. The optimal maintenance strategy after this induction regimen and whether the same applies to other agents remains unknown.
Only patients with an elevated CRP or mucosal lesions at colonoscopy benefited from combining IFX and AZA in the Study Of biologic and immunomodulator Naive patients In Crohn's disease (SONIC) trial (49). AZA may influence IFX immunogenicity, but other reasons are possible (66). The optimal strategy after 12 months’ combination therapy remains unknown, but reducing treatment towards monotherapy may be appropriate, simply to reduce infection risks (17). Whether combination therapy could improve outcomes from other anti-TNF agents is unknown."
I'm trying to figure this stuff out myself as well. My new GI postulated that since it's been several years since I've taken Imuran, perhaps I'm now AZT-naive "again".
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This may scare you.... UNDER REPORTING OF CANCER FROM TNF-BLOCKERS!!!
First link (that was removed) is for cancer . org and search Hepatosplenic T-cell Lymphoma.
Second link (that was removed) is for rheumatology . org /practice/clinical/pediatricmalignancies.pdf
I am a mother of a child with a rare disease. He's been on methotrexate, Enbrel, Humira, prednisone etc. etc. He felt great on the meds but I started uncovering lots of cases of under-reporting of cancers and use of these meds. The FDA report (second link) even states incidents are UNDER reported. Only 1% - 10% of cases were reported by 2009 in the pediatric report. That leaves two years of no report results. Also, if you read the discussion from cancer.org you will see patients whose doctor's REFUSED to report the cancer link because they could not definitively connect the cancer to the TNF-med. On the discussion, there are at least 6 more deaths reported.
I do not know what to do. My son is SO much better on these meds but the really fatal cancer Hepatosplenic T-cell Lymphoma, tends to target teen boys to young men. There were no male survivors on the discussion site I read. I feel like I am playing God and spinning a roulette wheel.
The FDA report is two years old and only discusses pediatric patient under 18.
If anyone can share their results, I would be so grateful.
I have two very important links to post but because I am a new user, it is preventing me from doing this.
try going to cancer . org and searching Hepatosplenic T-cell Lymphoma
the second VERY important link is to the FDA report. Try rheumatology . org and search for pediatric malignancies or tnf-blockers and malignancies.
First link (that was removed) is for cancer . org and search Hepatosplenic T-cell Lymphoma.
Second link (that was removed) is for rheumatology . org /practice/clinical/pediatricmalignancies.pdf
I am a mother of a child with a rare disease. He's been on methotrexate, Enbrel, Humira, prednisone etc. etc. He felt great on the meds but I started uncovering lots of cases of under-reporting of cancers and use of these meds. The FDA report (second link) even states incidents are UNDER reported. Only 1% - 10% of cases were reported by 2009 in the pediatric report. That leaves two years of no report results. Also, if you read the discussion from cancer.org you will see patients whose doctor's REFUSED to report the cancer link because they could not definitively connect the cancer to the TNF-med. On the discussion, there are at least 6 more deaths reported.
I do not know what to do. My son is SO much better on these meds but the really fatal cancer Hepatosplenic T-cell Lymphoma, tends to target teen boys to young men. There were no male survivors on the discussion site I read. I feel like I am playing God and spinning a roulette wheel.
The FDA report is two years old and only discusses pediatric patient under 18.
If anyone can share their results, I would be so grateful.
I have two very important links to post but because I am a new user, it is preventing me from doing this.
try going to cancer . org and searching Hepatosplenic T-cell Lymphoma
the second VERY important link is to the FDA report. Try rheumatology . org and search for pediatric malignancies or tnf-blockers and malignancies.
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- Mar 8, 2011
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It may be due to an older population. The average age at RA diagnosis is 60, which is also a population that is higher at risk for certain cancers in general.
I think the question is: do I treat a disease I have now or worry about a disease I might have later?
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Here is probably the best place for patient accounts..... Some state they could not get the doctors to report the death as a link to the TNF medication. It's located on the 'Cancer Survivor's Network" search Hepatosplenic T-cell Lymphoma..
address is:
if the link gets stripped, here is the long version:
h t t p : / / csn. cancer. org./ node / 136135
address is:
if the link gets stripped, here is the long version:
h t t p : / / csn. cancer. org./ node / 136135
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Hello Sabin,
I hope you are well.
My husband has Crohn's and I am searching forums in order to help PREVENT more things from happening. My hubby has been on Humira since hmmm at least '08. While he has gone from super skinny 6'0 and 140lbs to 190lbs, he also had an unusual squamous cell involving his fingernail!
His fingernail history began with a "v shaped ridge" of nail growing under his ring finger. The top of the nail looked intact but there was also the painful ridge underneath. It would swell and he could pull the finger tip away from the nail and squeeze pus, it would resolve after soaking in salt water, then reoccur after awhile. After much prodding.. he went to a surgeon that thought it would be no big deal. It turned out SCC and he subsequently had the distal phalage removed and a sentinal node biopsy which was negative.
The surgeon was quite shocked as he said he never had seen SCC under the nail. It is possible for unhealed picked at infections to turn into a cancerous type as cells evolve over time..so we thought it was a fluke. This all occured around 2008.
Now, 2012, he began 3 months ago with eye irritation and itching which he attributed to seasonal allergies. As it would not clear up AND he started to develop a small growth on his eye he went to the eye doctor.
It too has turned out to be SCC and he will have it removed in Oct 2012. The corneal specialist is really optimistic in saying it has not invaded the cornea and he thinks it will just peel right off, but he will need it cryo'd to be safe.
okay...now two weird SCC's in unusual places. As I began looking into SCC's apparently it is a side effect of Humira !!!! I am worried about other things popping up as I want to be hypervigilant.
On a side note he does have peripheral vascular disease (numbness and tingling in his feet) which he acquired while on Flagyl which is another side effect. He has been on folic acid but has subsequently found that Humira can cause that too so it's probably not going to resolve for Rob as long as he is on the Humira and at this point, the damage is probably irreversable.
Anyway, these are Rob's experience with Humira... its been good and it's been bad, but I guess it could be worse. He is only on Humira with no adjuncts.
Regards,
Erica
I've been getting skin cancers regularly (BCC,SCC and a basal cell papilloma). I have been on Azathioprine 100mg,50mg on alternate days, but now Humira (for 6 months). Up until a month ago I was taking both. I now have a scc under my tongue which was incised prior to a biopsy and doesn't appear to have cleared the margin. I've got a persistent fungal infection also. I've been expecting to wake up with colorful toadstools coming out my nostrils.
I've been treating my skin cancers with a common weed which grows everywhere in my garden. It's botanical name is euphorbia peplus and if you google it you'll see that it is quite effective. Since yesterday i started chewing it and spitting it out. It burns my mouth a bit but I can feel it talking to the area I had cut out.
I still have sore guts.
I've been treating my skin cancers with a common weed which grows everywhere in my garden. It's botanical name is euphorbia peplus and if you google it you'll see that it is quite effective. Since yesterday i started chewing it and spitting it out. It burns my mouth a bit but I can feel it talking to the area I had cut out.
I still have sore guts.
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I have been on humira for 2 months, am freaking out about the risks for cancer and dying. The drug has helped my crohns but Idk how to stop thinking I could die. My baby girl turned 5 yrs old today, and I want to be here for her! I'm a 39 yr old mother who is overwright. My crohns is active in my colon. What can i do to live longer? Does being overweight contribute to more risk of cancer on humira?
I understand your concern deniselind.
The squamous cell carcinoma under my tongue seems to have been caught after the doctor had a conference with the pathologist. I have to go back in 3 months for a check.
One thing is clear you have to triple your vigilance re growths on the skin or even an ulcer in the mouth.
As I said above I was on azathioprine for (about) 4 years before starting humira , I'm not sure which is worse. I don't like immuno suppressants.
I think we need to look carefully at the studies which quantify risk.
The biggest hope seems to be here: Fecal Transplants: They Work, the Regulations Don’t (from wired .com)
The squamous cell carcinoma under my tongue seems to have been caught after the doctor had a conference with the pathologist. I have to go back in 3 months for a check.
One thing is clear you have to triple your vigilance re growths on the skin or even an ulcer in the mouth.
As I said above I was on azathioprine for (about) 4 years before starting humira , I'm not sure which is worse. I don't like immuno suppressants.
I think we need to look carefully at the studies which quantify risk.
The biggest hope seems to be here: Fecal Transplants: They Work, the Regulations Don’t (from wired .com)
Here is a new article about Humira and AbbVie, the spin off of Abbott Labs, the maker of Humira. AbbVie is refusing to release clinical trial data: http://bit.ly/12Azwrr
The creators of Rxisk.org are encouraging people to report side effects at their website.
The creators of Rxisk.org are encouraging people to report side effects at their website.
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Your gastroenterologist should be recommending an annual check by a dermatologist.
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Yes, metastic squamous cell carcinoma of the parroted gland.
