PsA - Biologics and post prostate cancer

General
1

I was diagnosed with PsA last November after many years of pain. Doc put me on Otezla because my liver numbers were too high for MTX. Saw doc last week and he is concerned Otezla is not working as it should. Solution right now is Oxy.

He told me I may need to consider Humira or Embrel. When I first saw him he said no to biologics because I had prostate cancer the year before, now he is saying I need to consider them.

I have read the studies about Humria and Embrel and the cancer relationships. I am not very enthusiastic about taking them after having cancer. Anyone have an opinion on this?

My pain levels are bad because I have had 4 neck surgeries to fuse 4 cervical vertebrae due to a car wreck 12 years ago.

I am 59 and seriously considering going on disability, but I keep telling myself if I do I will sit around the house and get worse.

2

Arenā€™t all the immune suppressive drugs supposed to increase the risk of cancer?

Do they know the actual statistics? Because if I buy 1 lottery ticket and 1 million tickets are sold then the chances of winning are 0% if you buy 10 tickets your chances of winning are 10 times bigger but the chance of winning is still 0%

Iā€™m not saying chances are that lowā€¦ I really have no clueā€¦ Iā€™m guessing there a bit higherā€¦ but is it more then smoking? Or eating red meat? Or what about air pollution?..

I get not wanting to risk it when you have a good alternativeā€¦ but if itā€™s a choice between going on disability and always being in this much painā€¦ and a good chance of having much less pain and still being able to live my lifeā€¦ itā€™s maybe not worth an 80% chance of getting cancer but the chances are definitely not that high!

Living a long life isnā€™t worth much if youā€™re in this much pain anywayā€¦

But then again Iā€™ve never had cancerā€¦ I didnā€™t add the pain of that into my considerationā€¦ just the dying of cancer partā€¦ Iā€™m not sure if that would chance my mindā€¦

3

From the studies I have read on Humira, et. al., the initial studies indicated there was a 1 in a 100,000 chance of acquiring lymphoma from Humira. More recently, the numbers are coming up 1 in 50,000. This is just for lymphoma. BUT, more recent long term studies have shown that people with RA (those originally studied for Humira) have a 1 in 50,000/100,000 chance of developing lymphoma even if they are not taking biologics. Scientist are starting to learn that chronic inflammation and stress leads to cancer development and cardio-vascular events. SO, is there a cause and effect with Humira and cancer.

There are other cancers that have developed with bilogocs, but there is not enough information to determine cause and effect. I am a statistics person, I donā€™t pay much attention to anecdotal stories on the internet.

I donā€™t have the B27-HLA, but I still got PsA. I donā€™t have the HLA marker for prostate cancer, but I still got it, but I have a lower risk of recurrence since I donā€™t have the marker. You could say I got lucky. My prostate cancer was a more aggressive form and if it had been 6 months or a year later, I would have been in trouble, I was told prior to removal that I would have to have radiation, but, since I didnā€™t have the marker and it was still contained, I didnā€™t. However, I have to go 5 years with my PSA scores at 0.00 to be considered cancer free.

As for your analogy to the lottery. It is actually 1 in 180,000,000 chance. But, if you donā€™t buy a ticket the chance is zero. If you keep buying multiple tickets, the chances of winning are remotely higher.

If you take a single dose of Humira, what are the chances? If you keep taking multiple doses, your chances are going to increase. I still buy lottery tickets, because there is always a chance.

I am going to have to read many more studies before I feel comfortable moving to a biologic. Humria is what is called a TNF blocker. TNF stands for Tumor Necrosis Factor. This is your bodies natural antigens that destroy abnormal cancer cells and tumors. Humira will reduce how much TNF you have and how well it works.

You are right, a log life may not be a consideration if you are in a great deal of pain. There is going to be a trade off someplace.

4

Hey there, Tamac. Weā€™re glad that you found us, but oh, havenā€™t you had a bad run in the last little while! Still, it must be a bit of a relief to know what is causing the chronic pain that youā€™ve been suffering. And then to have PC as well ā€¦ my husband went through radiation treatment for his last year. Not an easy time, but he has recovered quite well. He is having some one year testing done soon, so we are keeping our fingers crossed. Good luck to you with that as well.

Iā€™m not going to wade into your sensible thoughts and questions about chances of getting cancer. I can tell, though, that youā€™re going to get along with our technical, medical and spiritual leader, the venerable tntlamb. (Iā€™m hoping that brings a smile to @tntlambā€™s face: he needs a smile these days.) Iā€™m sure he will supply statistics, peppered with his own unique brand of wisdom and commonsense, soon.

In my own case, I had my own cancer experience after three years of biologic treatment. I got basal cell carcinoma on my nose. Now the question: was it the bio, or was it my four years as a lifeguard with a peeling nose in my teens? Or maybe my two years of working in the tropics? Who knows, and it doesnā€™t really matter. What mattered was that we caught it early and it was completely removed. Was the relief I got from Enbrel and Humira worth it? LOL ā€¦ what do you think?

Cynthia makes a point about being in terrible pain to avoid the possibility of getting cancer. And I think youā€™re absolutely right when you say thereā€™s a trade off there somewhere. And each one of us has to decide where that is for us.

Itā€™s great that you joined us, tamac! This discussion is going to be get really interesting when tnt gets rolling on stats, as only he can.

Stay tuned!

Seenie

5

Hi tamac. Looking at those numbers plus:

Plus:

Iā€™m thinking that an entirely rational decision based on available evidence is going to be difficult. But if this is your preserve, the numbers, the statistics, then I understand that they will be a key factor in your decision one way or another.

Ultimately, youā€™ll get to a place where you either do or donā€™t feel comfortable opting for Humira. Your use of that word ā€˜comfortableā€™ is spot on I think. A commitment to long-term medication has to feel right. I was told that because my Mum had multiple sclerosis, ā€˜theyā€™ would have to keep an eye on me. Iā€™m not sure what the numbers indicate about my risk in that respect, but did it give me pause for thought? Of course! However my impression is that my overall health has been somewhat better since starting treatment for PsA than it was before.

Itā€™s good youā€™ve joined us and good luck with your decision.

6

I live in the Netherlandsā€¦ we only have about 17 million people and most of them donā€™t playā€¦ so my chances of winning are much much higher then yoursā€¦ and Iā€™m still never going to win :wink:

My point was exactly what you said here:

They compare the side effects people report next to how many people get those same side effects when there healthy and not taking the meds instead of them having PsA and not taking the drugā€¦ My guess is thatā€™s why all the arthritis drugs can cause joint painā€¦ and my doctor told me thatā€™s why the biologicals have depression as a side effectā€¦ peoples joints feel better but there still not happy so they go see a psych and suddenly they developed depressionā€¦ which showed up after taking the drug so it has to be on the side effects listā€¦

You need to compare the added risk of when youā€™re on the drugā€¦ not just the risk on its ownā€¦ And they donā€™t know the answer to that weā€™ll enoughā€¦ and definitely not YOUR riskā€¦ because itā€™s impossible to knowā€¦

7

hi Tamac, i donā€™t know if this will help with your odds calculations. I read recently that there is a link between Psa & Hodgkins & Lupus. your odds may improve taking that into account. still look on the bright side they have a good lottery in Holland! sounds like you have a lot to think about, hope you work it out.

8

Well first of all the risk of lymphoma from biologic medications is true.However its extranodal T-cell lymphoma. That cancer primarily affects young males, especially in adolescent and young adult patients with Chrons Disease (especially boys.) That eliminates most of us on this forum. In terms of the rest of the numbers, trying to figure them out will make you crazy (likely part of my personality issues as thats what I did fro 30 years)

You could take the two sets of numbers and do a two tailed analysis, BUT the answer is painfully obvious before you do the multitude of calculations that would even task a super computer. 1:50,000 (and mostly teenage boys) vs 100% for the progression of PsA if left untreated.

Most of the folks here are early in their disease so are mostly concerned with ā€œjoint painā€ I hesitate to mention that is the least of the worries. Now Iā€™m not minimizing that issue, certainly losing the use of your feet as has @Seenie is bad, as is the deformation of other joints lake my shoulders. One has to remember that PsA is far more than that. My heart has PsA, I have had numerous hospitalizations for that as well as a stroke from the resulting SVT. My Granddaughter has PsA related problems with her kidneys which have essentially shut down. Now a 100% chance of those issues happening vs a 1:50,000 chance of a very treatable cancer (if caught early) seems to me a no-brainerā€¦

Back to the Lottery thing and buying one or many tickets. (I donā€™t buy any, I prefer playing cover bets on the roulette wheel of which I am way ahead) The cancer thing is just exactly that. Easily forgotten is the fact that HALF of the population will get cancer in their life time. Its a coin flip whether you will or wonā€™t. Buying one more lottery ticket that increases your 50-50 chance of cancer isnā€™t going to change anything. (well if are in the 50% that get cancer anyway, you could spend some time ranting on the internet that XYZ caused your cancer so donā€™t be like me and do XYZ because you will get cancer)

BTW I have cancer it was caught early and treated. I go in on the 15th for my every 18 month colonoscopy to remove any new spots. The fact is I donā€™t even think about it until my post card comes reminding me of my appointment.

Of course there is a link in multiple diseases and cancer. It causal however. All of these diseases have a breakdown in the immune system. How it shows up is a crap shoot (another game I donā€™t play)

We do have a cover bet. We see our docs several times a year Any cancer should be detected early making it treatable (still scary as hell) and consequently not a huge big deal. The conclusion of ALL the researchers and number crunchers is the same in regards to biologics. The advantages far outweigh the risksā€¦

You also want to be careful of the numbers (especially on internet sites.) The often intermingle Absolut risk and relative risk A relative risk of 100 percent means your risk is twice as high as that of someone without that risk factor. A 200 percent relative risk means that you are three times as likely to develop that condition.

Risk seems greater when put in these terms. A 100 percent increase in risk may seem enormous, but if the risk began as 1 in 100 people, a 100 percent increase in risk means that 2 out of 100 will be affected. not so much.

lymphoma risk is increased in a number of autoimmune conditions (including those on biologics and those not, compared with the general population: rheumatoid athritis (3.2 times higher),[ systemic lupus erythematosus (3-8 times), Sjƶgrenā€™s syndrome (4-5 times), sarcoidosis (4-10 times), psoriasis (2 times), Sounds horrible.

Your life time risk however is less than 2 in a hundred, at worst it becomes 4 in hundred. (treated or not) 86.4% of lymphoma patients survive. See what happens when you run absolute risk and relative risk together. The casinos make a fortune of this. The advertise 95% payout on slotsā€¦ It makes people assume they will only lose 3 cents of every dollar they gamble. They donā€™t. Statistcally you have to pull the handle 1000 times to reach that number. Pull the handle once and you have nearly perfect chance of losing. Pull it ten times and its most likely you will break even,

Your chances of a cancer problem are VERY low indeed. One immunologist I know claims that your chances of dying from lymphoma are actually HIGHER if you donā€™t have treated autoimmune disease because it wonā€™t be detected in time to treat. Thats certainly the case for me and my cancer.

1 Like
9

Certainly I can vouch for TNTā€™s last comment. Iā€™m on Humira, I had a couple of weird symptoms and my Rheumy had me straight in for the B Cell Cancer panel. B Cells - the Lymphoma ones - were fine, though some others were a bit skewed. These donā€™t have a link to Humira, but we never would have found them if I wasnā€™t taking Humira and thus there was a suspicion index to look. Because we found it early (kind of pre-cancerous stage), we are monitoring, and if it makes a sudden move, we can treat early, which makes a huge difference in survival. Itā€™s a hard cancer to spot, and often diagnosed too late. So in my case, the possible association of Humira with Lymphoma has, weirdly, probably been a good thing :thinking:

I imagine you may still be doing some monitoring, but I donā€™t know anything about prostate cancer. Certainly itā€™s not required for the average person taking biologics, but if you are concerned, and you want to consider biologics, you could always discuss with your Rheumy if doing a general cancer / lymphoma screen with your normal blood tests would be helpful in your case.