Date: 02.08.2011
From: louloubelle
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Subject: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Hi all I really want the opinions of you guys as to whether or not I should go back on anti-tnf. I want to know what you guys think as you're the only ones that understand what it's like to live with arthritis. I have extensive PsA and was on anti-tnf which virtually cured me of all of the arther symptoms but came off it last year when I fell pregnant. While pregnant I found out I had breast cancer. I was told that I couldn't go back on the anti-tnf for ten years as, because the drug is relatively new, they don't know whether or not it would increase the risk of the cancer returning. My little boy is ten months old now and into everything and I'm finding it difficult running around after him and lifting the heavy little lump. I'm taking leflunomide which is improving the condition but I'm onmly 50% as well as I could be on the anti tnf. My rheumy and I have discussed the pros and cons of going back on anti-tnf and he has told me that if I want to go back on it he will be happy for me to sign a disclaimer form and he'll prescribe it but he won't give me his opinion, just the facts. The pros of going back on anti-tnf are that I would be able to live my life and take care of my little boy as if I didn't have arthritis. It would also clear up the psoriasis which is currently affecting about 80% of my body and is sore, red, itchy and ugly. I wouldn't have to take anti-inflammatories, pain killers or leflunomide which all have possible side effects, including possibility of affecting my stomach, liver and kidneys. I would also have my energy back and improve the anaemia that I have when I have flare ups. There is only one negative but it is a massive one - there is the risk that anti-tnf could increase the risk of the cancer returning. So, what would you do? Lou x
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Date: 02.08.2011
From: bsk
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Hi Lou, You are between a rock and a hard place. I would say: 1) they don't know for sure whether it will cause the cancer to reoccur and 2) These are some questions I might ask: are they sure it is the anti tnf that caused it (have you had a gene test to see if you are more susceptible?) Is it possible to get this done? Are you one of the breast cancer patients who can take herceptin or whatever the drug is for a particular cancer gene? Is there any risk of it returning without anti tnfs? (hopefully, not, but it might help you make your decision.)
3) Has your rheumy discussed with your breast cancer consultant? You should request them to have a meeting about your case, if they haven't done so already. I am high risk for breast cancer and insisted my consultants conferred about risk before I started anti tnf. They should screen you closely while you are on it.
I know the pain of severe arthritis and it is hard to live with. I am not in the same situation as you but chose quality of life as mine felt very poor. You have a young child so you have to consider their needs too. Tough. Hope you get to a good decision for you hun and this helps a bit.
xx
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Date: 03.08.2011
From: louloubelle
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Hi bsk, thanks for your thoughts. I'm not able to go on herceptin as i was pregnant when started treatment so they couldn't put me on it - i'm taking tamoxifen instead. They haven't considered me a genetic risk as the only person in my family to have breast cancer was my dad's, dad's mum, although there is only one other female older than me (my auntie) so unless she's unfortunate enough to get it then they won't even test me for the gene. I find it disgusting that they won't - there are 15 younger females on that genetic line - how many of us have to get cancer before they do something about it? My rheumy has been brill - he's been onto oncology and the breast unit every step of the way but they are so concerned with treating the cancer that they have forgotten about the patient! I don't think they understand the condition either. They have objected to every disease modifying drug going as they work on the immune system - they're expecting me to cope on anti-inflams and pain killers only.... i've had both hips replaced, I hardly have a mild case of arther!!! I think Dr James only managed to get away with putting me on leflunomide 'cos oncology don't know much about it. Dr James is pulling his hair out with them really! The problem that Dr James has is that if he puts me back on anti-tnf and the cancer returns then it's always going to be blamed for the return and may harm the chances for other patients in the future! However, if I don't go back on it and the cancer still returns I'm going to regret not going back on it!!! I wish this was an easier decision to make!
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Date: 03.08.2011
From: bsk
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Hi Lou, you seem to have everything covered and I agree with you about the gene testing. Especially given your situation, they should do it, it would certainly make your decision easier. Sounds like you have a good rheumatologist though, so that is a blessing. Could you ask for a meeting with all parties together, including you and your partner, so you could thrash it out and come to some plan? All I can say is that you have to make the decision that is right for you, now, and maybe try not to think of the future too much, who knows what it holds. I know how difficult it is to function with severe arthritis, mine is not mild either. My thoughts are with you.
xx
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Date: 03.08.2011
From: louloubelle
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
thanks bsk i have already given the rheumy the go ahead! i think i've made the right decision, i just really needed to know what other people with arther would do - i don't think i'd change my mind if loads of people said they wouldn't go on it though!!! I hopefully start back on it next week. The first thing i'll do when i start to see an improvement is take oscar swimming - i can't wait :-) take care
lou x
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Date: 03.08.2011
From: bsk
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Well, now that you've said it, I would do the same thing :) good luck and here's hoping it all goes smoothly. You deserve a bit of a break.
xx
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Date: 03.08.2011
From: davina
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
hi lou i think you are amazing having been through all you have and still smile. i would also go back on to the anti-tnf due to having a crazy energetic 2 yr old.
i got my RA when my son was 6 months so i know how hard it was going through that stage now my RA is still active my mild/med pain during day but have to use crutches when out due to my knee stiffen up and give way all the while lucus getting faster and more active. i would defo understand why you are going back on to it in that point of view, we all know the risks of all meds and you have had the cancer and come out of it well i just hope it doesn't come back for you. hope Oscar is well, 10 months already wow. xxxxxxx
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Date: 04.08.2011
From: LynnB
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Hi Lou only just read your post, What a hell of a decision to have to make. As if life hasnt thrown enough at you bless you... I would just like to wish you all the luck in the world with your decision and hope you start to get an improvement very soon. Your going to need all your energy running round after little Oscar can not believe he is 10 months already. Good luck and take care. xx
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Date: 05.08.2011
From: louloubelle
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
thanks bsk, davina and lynn b - i'll let you all know how i get on x
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Date: 05.08.2011
From: marlene
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Subject: Re: would you go back on anti-tnf if you knew there was an increased risk of cancer?
Lou, just want to send you a big hug and best wishes. Hope all comes good for you X
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