Still going round the Mulberry Bush

Hi Mo. I’m so pleased to talk to you but so sad you’re still having to fight. I’ll have a scout round for somebody you could see for another opinion. 
Have your team mentioned surgery? I suppose it’s too much of a trade off for  not having to take monoclonal antibody drugs 

Hugs

Mo. 
I’ve found all sorts of online communities for Crohns. 
Have you tried any of these. 
I think it’s awful you have to be chopped about constantly. You must be so tired of it all. 
How  is that Sherman of yours? 

I have looked at quite a few forums but I am very rare because of the Ferguson Smith so there is no one else that I can find with multiple skin cancers being given these drugs.  Had to rush Sherman to vets yesterday his front left paw is swollen 3 times normal size from Knee down and he had a temp, think this could be expensive.....

this is what it says on drug sheets -----Caution should be exercised when considering ustekinumab for the treatment of patients with a history of malignancy, those who have a known malignancy, or in continuing treatment in patients who develop malignancy while receiving this agent, particularly those with risk factors for skin cancer.

Hi Mo. Was thinking about you and Sherman the other day. Glad to hear from you sorry you’re still being hacked around. I understand your reluctance especially if a side effect is possibly more dancers. I’ll have a look as well as Dani. 
I’m  fast approaching the 5 year mark some days j thjnk wow that’s come round quickly ithers it’s been a long one. Glad to read Sherman’s is up to his old tricks. 
keep posting on here it’s where you started.

hugs Hazel xx

Hmm. I’ve found a connection between the skin lesions you get and treatment with a type of monoclonal antibody called Anti-TGFβ 

I might suggest you contact an oncologist at a cancer centre to see which other ones are available for crohns. They are much more likely to have an answer than a crohns medic. I wish I could help more. A lot of the language is beyond my pay grade 

Basically there are three types of monoclonal antibody and it may be that one may be less risky than the other two? 
Grab an oncologist. 
Let us know how you get in. 
I hope Sherman has just stepped on a wasp. ‘It’s the season 

Thanks Dani this is kind of what I meant have posted on a skin cancer site to see if anyone else got theirs through immunosuppressants.  I am discussed at MDT meetings but according to IBD team they have agreement from lung oncology and someone in dermatology but i dont think it is my dermatologist as she wrote to me herself last week about using a drug for my FS, think i will call her secretary next week and try and have a chat.  Prof Patel from ENT has not answered them and he has seen me more than most.  I just have red flags flying through my head saying dont do it but if the drug means i am no longer in pain is it worth the risk for a few pain free years, that is serious me talking now not joking at all.

Mo

Good to hear from you Hazel, lol if only side effect was some dancers.  Glad you are doing OK 5 years and counting.  Enjoy every minute 

Love Mo xx

Hi Mo me n my typos they have a world of their own. Some things never change. Yes 5 years where’s that gone. Difficult decisions you’ve to make. Pain is terrible if you cant  control it so can  understand the gamble you’re willing to take. 
Hugs Hazel xx

St Bernard Lady said:

I just have red flags flying through my head saying dont do it but if the drug means i am no longer in pain is it worth the risk for a few pain free years,

Absolutely Mo. There are trade offs whatever you do. I don’t  know what I’d do but I’d seriously balance quality in favour of quantity. I hope you get an answer after your phone call. I hope they can give prof Patel a nudge too. Xx hugs 

Oh my just spent hours on the phone talking to secretary's regarding the biologics, it seems that no one has actually agreed that it is safe to put me on this drug, I am waiting for reply from IBD asked them who actually signed off on it as secretary's are not aware of this change.  It looks like Sherman has Rheumatoid arthritus and they are doing scans and a bone tap tomorrow.  Had 2 calls from hospital making me appointments with departments i am not seeing then correcting to ENT which was left with them going to call me regarding a third growth they removed from my left ear with the results, so this also sounds ominous.  I am actually sat here in tears which is not like me.  On top of this doctors surgery have issued me incorrect drugs I could not make this up.

Mo xx