Clexane - possible alternative?

[Slewis7313]

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]

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

Edited November 26, 2013 by Cathy

[Slewis7313]

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]

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]

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

Julia x

[Cathy]

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]

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]

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]

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

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[LindaH]

Thanks Steve

[Cathy]

Thanks Steve

That's really helpful

Cathy x

[cestrian]

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]

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

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[Cathy]

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]

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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[Slewis7313]

Now I've read your post properly Cathy, I see what you mean. The NICE approval neither specifically mentions cancer patients, nor does it preclude them..... Fingers remain crossed!

Steve

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[J_T]

I do find this quite alarming. Should it really be the patient who is in the know? Why do the Germans know about this and our doctors seem clueless?

Maybe I'm being unrealistic but I'd have thought oncologists would be right on the ball!

Will wait to hear what you all come back with.

Jx

[KATB]

NICE approval doesn't mean it will necessarily be available though.

Different areas (used to be PCTs, now CCGs - Clinical Commissioning Groups) make their own decisions about which drugs to add to formulary. Having NICE approval means it's easier to get a drug onto formulary but it wouldn't be automatically added. Usually someone would champion the drug, e.g. a consultant, and they would make a business case for having the drug added to the local formulary should they want it (this is why drugs are available in some areas and not others). There has to be a good reason to add it and I suspect that Clexane is a lot cheaper than Xarelto and, although it's an injection, it can be given at home just like Xarelto.

I know it's used in AF (atrial fibrillation) which I think is its primary indication.

Clexane might actually perceived as advantageous in cancer patients who already have a high pill burden. So it might be that oncologists currently see no real gain for a significant increase in cost (I don't know the cost but it's new so I'm guessing it's high vs an old established drug).

Still worth asking about it of course but thought it might help to explain how these things work. Germany is a completely different system as is the US - they often have access to more drugs based on their insurance coverage. In the US it's all down to what patients can afford to pay.

K

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[Cathy]

Thanks Kate

That is a really helpful explanation of how things work.

For us the benefit of taking another pill when Jonathan has so many is that he just doesn't like injections (aww), but also that a pill can be carried in his wallet and taken if we are out somewhere whereas clexane is a bit more of a faff, especially as I needed to give the injection to him (which inevitably made us look a bit furtive if we were out - the stories I could tell!!).

We will try make a case when we next see the Onc.

Hope you and the boys are ok?

Cathy xx

Edited November 30, 2013 by Cathy

[Slewis7313]

Interesting stuff Kate. The NICE documentation does go into cost with cost of the new drug lower for short term treatment, but higher over the longer term. It sort of implies that the difference is not great between the two, but as you say the final decision to implement is probably not as straight forward as it could (should?) be!

Steve

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