[pottermanParticipant]

Now that Velcade is not available through the CDF what is the standard first treatment for MM by the NHS in England.

[avrilro55Participant]

I also have a question ? I had standard CDT treatment last year for four months, finishing in June and no treatment since, with the exception of Zometa bone i fusion 6 weekly. I last saw consultant in June and due back end of October. My light chains plateud  out at 37 last June and had risen to 100 in a year. I know in the scheme of things i been lucky so far, no symptoms etc., since coming off of CDT and light chains were 347 when first diagnosed with a single plasmacytoma!.  This was treated by daily sessions of radiotherapy for four weeks. In answer to Potterman the hospital i am under first round of treatment seems to be CDT which is not under threat.   However, can someone answer me as to what is the usual second round of treatment is . They dont seem to be in a hurry to recommence treatment with me as all other bloods very good. It seems to be watch and see at the moment!! Does anybody else have this kind of experience and would know what the second round of treatment is? Thanks for your anticipated response and wish you all well.

 

 

[stanley-1960Participant]

 

Hi Potterman/Avril,

Below is the link to the pathway. Velcade is normally used as a first relapse treatment (second treatment) or as a first line treatment if thalidomide could be harmful or the patient is unsuitable for SCT. The link is the NICE approved standards for treatment. Velcade was removed from the CDF fund for specific second use for relapsed patients who had already received it and had responded for 6 months. In that particular scenario it is no longer available.

http://pathways.nice.org.uk/pathways/blood-and-bone-marrow-cancers

Avril like yourself my initial treatment has been CDT followed by STC and my consultant assures me when my relapse comes he has indicated my next avenue will be Velcade as per pathway.

Best regards,

Stanley

[avrilro55Participant]

Thanks so much for your comments. I am not going to go down the SCT route. I don’t think i could cope with it from what i have heard . My consultant has said even though i am over the “accepted” age for SCT – i am 73, but because i so well and fit he would not have a problem with me having it done. guess it just a personal thing and not for me. Reading your comments would i still be eligible for velcade? Thanks for your response.

[stanley-1960Participant]

Hi Avril,

It would solely be your consultants decision but if he followed the recommended route as per guidelines then yes. On the age for SCT my local hospital broke their record last year 78 year old. He must have been as fit as a butchers dog.

Best regards,

Stanley

[avrilro55Participant]

1. Hi Stanley – i  am a bit of a coward and the thought of SCT terrifies me. What hospital are you under. I am with Addenbrooks. They been fantastic. Thanks for your input.

[pottermanParticipant]

My partner had VCD from April 14 to Nov 14. Has been off all treatments since November apart from Oxycontin for pain and Zometa infusion once every four weeks. She has had  a Complete Response and Remission since then. Dont know exactly what we can have now at first relapse. An sct has never been mentioned as an option.  Dont know whats next. We are been seen at the Royal Stoke University Hospital in Stoke on Trent. We go for our three month review on the 18th September.  Any info would be very welcome.

[pottermanParticipant]

Any info at all ?

[cygnetParticipant]

Hi

I’m afraid I can’t help you but if you ring the Myeloma Infoline I’m sure one of the nurses will be able to.

I hope all goes well on the 18th

Cx

[iangParticipant]

This Royal Surrey flow chart may help:

http://www.royalsurrey.nhs.uk/Myeloma_algorithm

Note that Pomalidomide will not be funded from 1st November. Lenalidomide (Revlimid) will not be funded for 2nd line treatment, but will continue to be funded for 3rd line treatment. In both cases existing treatment can continue.

You can see the September 2015 (and previous) CDF decision summaries here:

http://www.england.nhs.uk/ourwork/pe/cdf/cdf-drug-sum/

and for patients already being treated, see para 6.11 in the following guidance:

http://www.england.nhs.uk/wp-content/uploads/2013/04/cdf-sop-2015-16.pdf

‘6.11 Where a drug has been removed from the National CDF List as a result of the re-prioritisation process and it has not been commissioned by NHS England as part of a national chemotherapy funding policy or in response to a positive NICE Technology Appraisal, any patients currently receiving the treatment under the CDF will normally have the option to continue treatment until they and their clinician consider it appropriate to stop.’

The Royal Surrey protocol for VTD (Velcade (Bortezomib) + Thalidomide + Dex) says it is the ‘preferred 1st line option for transplant-eligible patients’. See line 6:

http://www.royalsurrey.nhs.uk/VTD

This ties in with the NICE pathway for MM (see Stanley’s link in post 3).

Their protocol for CTD (Cyclophosphamide + Thalidomide + Dex) says it can be used for first or subsequent-line chemo:

http://www.royalsurrey.nhs.uk/CTD(a)

You can explore their full list of guidance and protocols here (scroll down to multiple myeloma):

http://www.royalsurrey.nhs.uk/Haematology-Chemotherapy

Other hospitals may have different protocols. I have no connection with the Royal Surrey, I chose it because it came up in a search and it’s online documents seem to be fairly comprehensive.

Re your 1st post, as far as I can work out Velcade is still approved by NICE for 3 situations: induction treatment for transplant-eligible patients; induction treatment for transplant-ineligible patients who can’t be treated with Thalidomide; and treatment at 1st relapse for patients who have not received Velcade treatment previously.

It is not listed in connection with myeloma in the May 2015 or September 2015 CDF decision summaries I gave a link to above. It is in the December 2014 summaries (Bortezomib in bortezomib-naive patients with relapsed myeloma).

Ian

[suffolklizParticipant]

Hi, my mum was diagnosed with MM about three weeks ago and has just finished her first cycle of Velcade. We knew nothing of the condition or that Velcade came off the CDF in Jan 2015 so my mum has been able to access it. I guess you should talk with your consultant as I believe they can make a case for these drugs on a patient by patient basis –  that is what a sister at Ipswich Hospital told me last week anyway. Hope that helps.

Liz

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