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Date: 14.11.2010
From: louloubelle

Subject: Not allowed any arthritis meds cos I've got cancer!!!

Hi guys

Well, brilliant news re: my breast cancer - After only 4 of the 8 chemotherapy sessions the originally 5 cm tumor is no longer detecatable on a scan! I am absolutely over the moon! I had my 5th round of chemo on Friday and am feeling well, in fact I don't even feel like I've had chemo this time round!

So that's the good news. The bad news is that the oncologist will not allow my rheumy to prescribe any disease modifying medication (dmards) because I've had chemo and the way the dmards work on the body he feels that the risk of the cancer returning are too high. I am devastated - I am effectively being given a life sentence of disability. After doing so well on anti-tnf it is really deifficult to get my head around the fact that I may never feel that well ever again. Thank heavens I have my wonderful baby Oscar to give me something positive to focus on! I am going to be having some lengthy discussions with my doctors and may call a meeting with them to discuss this in more depth. I cannot believe that the oncologist has weighed up the risks against my future quality of life; I wonder if he fully understands how arthritis affects the individual - perhaps he thinks I just get achey joints and, as you all know, it is far beyond that! I also need to find out if the risk of cancer returning is general or if it is specifically breast cancer 'cos if it is the latter I shall be asking for a double mastectomy. I'd much rather have no breasts than be without medication for the arthur.

I shall keep you posted on my next battle.

Take care all
Lou x
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Date: 14.11.2010
From: kazzie

Subject: Re: Not allowed any arthritis meds cos I've got cancer!!!

hi oh no bloody hell the pain is bad enough but not been able to take anything most be hard ,and i agree with what you say i dont think doctors see how hard it is living with ra what medication was you on for arthur and it must be hard with a baby we have a 4year old and i cant do anything for him
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Date: 14.11.2010
From: bsk

Subject: Re: Not allowed any arthritis meds cos I've got cancer!!!

That's a bit of a blow, but am glad to hear the tumour has disappeared, that is fantastic news.

I am having a similar discussion to you as I am high risk for breast cancer and am being assessed for anti tnfs. Don't know what the outcome is but like you don't want to face this pain for life. I didn't know the dmards were risky for cancer, just thought it was the biologicals. I will be interested to hear what happens with your discussion and I will let you know what my breast Consultant says too.
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Date: 15.11.2010
From: louloubelle

Subject: Re: Not allowed any arthritis meds cos I've got cancer!!!

i've been on enbrel (anti tnf). When they put me on this 8 years ago they did say there was an increased risk of cancer. However, research has shown that the only increased risk is for a certain type of skin cancer and that there is no additional risk of breast cancer. All the same, once you have cancer, you are not allowed back on anti-tnf until 10 years after you have had the all clear!

I will keep you guys posted
Lou x
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