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Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Clexane - possible alternative?

Postby Slewis7313 » Tue Nov 26, 2013 10:35 am

When being discharged from Heidelberg recently, I was quized as to why I am still on Clexane 8 months after my Pulmonary Embolism. I explained it was recommened by my Oncologist, which still seemed not to make sense as they never go beyond 6 months. The Doctor then asked if I was aware of a drug in tablet form called Xarelto which Heidelberg have been using for 6 months with the intention that it may replace Clexane for home use. They are very excited about the results with the tablet acting very much like Clexane, but without any of the side effects which come with Warfirin (no monitoring / blood tests required). So I looked on NICE cinically expecting to find it was not approved, but I seem to have been wrong. NICE case number TA287 details a drug called Rivaroxaban which is the same drug. It has been approved for use and even has instructions (PDF) for users of NHS to ask Doctors if it can be prescribed.

Maybe I am missing something here, but based on the comments from Heidelberg, it certainly seems to be wortn considering, especially for those folk who (unlike me) do not have liberal amounts of fat around the belly area. I am due to see my Oncologist soon and will certaonly be putting the question to her.

Steve

Cathy
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Joined: Fri Mar 15, 2013 5:43 pm

Re: Clexane - possible alternative?

Postby Cathy » Tue Nov 26, 2013 11:02 am

Hi Steve

That is really interesting. I'd be interested to see what your Oncologist says. Jonathan is off clexane now (he took it for 8 months) but wonders whether he might need to start the injections again at some point.

He's also due to start the treatment that you were on (on Thursday) - I saw on another post you said you felt better after a month. Did you experience any pain reduction before then? I ask as his nurse doesn't want to increase hs pain meds as treatment is imminent and may reduce pain quickly.

Cathy xx
Last edited by Cathy on Tue Nov 26, 2013 9:52 pm, edited 1 time in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Clexane - possible alternative?

Postby Slewis7313 » Tue Nov 26, 2013 11:22 am

Cathy, in reality my pain stopped 3 weeks after my GemCap started. I had been on Cocodamol for about 6 weeks, but one night only 3 weeks into treatment forgot to take them but still slept well because there was no pain. The pain never returned!

I certainly hope Jonathan has a similar experience.

Take care

Steve

Cathy
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Joined: Fri Mar 15, 2013 5:43 pm

Re: Clexane - possible alternative?

Postby Cathy » Tue Nov 26, 2013 12:13 pm

Thanks Steve,

That is good to know and I'll let Jonathan know. He feels very apprehensive starting the new regime as he is worried about side effects but if it will zap the pain that would be great.

When he was on folfironox I think he felt the benefit almost immediately and stopped pain killers after the 2nd cycle - hopefully Gemcap will prove to be as effective and maybe he will be pain and pain killer free for Christmas. That would be a wonderful present.

Sorry for hyjacking your thread a little. Back on subject - Jonathan is off to his GP this afternoon so I've given him the name of the drug and he is going to ask about it.

I'll update with his findings..

All the very best

Cathy xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Clexane - possible alternative?

Postby J_T » Tue Nov 26, 2013 11:08 pm

How bizarre this has never come up before! Be interested on your medics take on it.

Julia x

Cathy
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Joined: Fri Mar 15, 2013 5:43 pm

Re: Clexane - possible alternative?

Postby Cathy » Wed Nov 27, 2013 10:29 am

Hmmm...

GP didn't know and helpfully referred him to the oncologists who we might not see for a little while now.

However, will endevour to find out somehow.

Good luck Steve - hopefully you will be able to come off those injections (your tummy must be black and blue by now!)

Cathy xx

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Clexane - possible alternative?

Postby LindaH » Wed Nov 27, 2013 11:19 am

Hi Steve,

Is this Clexane taken for DVT? I am on Dalteparin long term - in fact for the rest of my life - as my Oncologist said DVT is one of the side affects which comes with Pancreatic Cancer.

I have to inject my thighs and they are both in a terrible state because of the injections, so if there is an alternative I would love to know about it.

Linda

Cathy
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Joined: Fri Mar 15, 2013 5:43 pm

Re: Clexane - possible alternative?

Postby Cathy » Wed Nov 27, 2013 11:25 am

Hi Linda

Yes, it is for DVTs.

I think different oncologists say different things - we were told different thing by 2 seperate oncologists in our team - one said for life and one said Jonathan could come off after 8 mnths, so he has. So if htere is a pill that could be taken instead, this would be great news.

Cathy

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Clexane - possible alternative?

Postby Slewis7313 » Wed Nov 27, 2013 11:28 am

Try this link which covers the drug:

http://guidance.nice.org.uk/TA287

It is intended for ongoing treatment / avoidance of DVT and PE's.

This is relatively new, but the link shows guidance to the NHS in June this year...... It should be avalable.

Steve
X

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Clexane - possible alternative?

Postby LindaH » Wed Nov 27, 2013 11:51 am

Thanks Steve :-)

Cathy
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Re: Clexane - possible alternative?

Postby Cathy » Wed Nov 27, 2013 11:59 am

Thanks Steve

That's really helpful

Cathy x

cestrian
Posts: 220
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Re: Clexane - possible alternative?

Postby cestrian » Wed Nov 27, 2013 7:02 pm

Thanks Steve

Very useful as I've been on Tinzaparin injections since July and have been told these will be indefinite so an alternative oral drug would be great. I shall put it on my list for the Prof!! The only good thing is that when I lie flat in the bath I can play solo chess using the bruises as the black squares!!

Love and Peace

Mike

Slewis7313
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Joined: Sat Dec 08, 2012 8:48 pm

Re: Clexane - possible alternative?

Postby Slewis7313 » Fri Nov 29, 2013 11:37 am

Just received a copy of my discharge letter from Heidelberg. The original has gone to my Oncologist here in Swansea and specifically suggests I should be put on the new drug. I have not yet received my appointment date, but this will give her time to look into it before she sees me.

I'll keep you posted

Steve
X

Cathy
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Joined: Fri Mar 15, 2013 5:43 pm

Re: Clexane - possible alternative?

Postby Cathy » Fri Nov 29, 2013 11:59 am

Hi Steve

Jonathan went for his first gemcitabine infusion yesterday so when the on duty oncolgist came around with the consent form I asked her about this drug (as she mentioned clotting was a risk). She HAD heard of it but didn't think it was used yet on cancer patients (I said that it was in Germany). She was going to "look it up" last night.

TBH I asked her so many questions she probably thought I was a pain in the ****!

Will update if we find out more.

Cathy x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Clexane - possible alternative?

Postby Slewis7313 » Fri Nov 29, 2013 12:35 pm

The link to NICE confirms it is approved, so fingers crossed (again). When we visit the Oncologist, we go as a family and you can see her brace herself for the onslaught when she asks "any questions"?

Got to keep them in their toes!

Steve
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