Maintenance therapy

Does anyone have experience of Pemetrexed as maintenance therapy?

[Bow-19]

I am having permetrexed as a maintenance therapy. I have it 3 weekly and am on my 7th cycle. I have had some nausea and vomiting for the last 3 cycles, my Consultant does not think this is related to treatment.

If you want further information please let me know.

[davidrwarren in reply to Bow-19]

My wife has had 4 cycles of permetrexed at 3 weekly intervals as a maintenance dose because she was too weak for any platinum based chemo. Tumour development has been halted but this had not improved her quality of life, so the oncologist advised that she come off it. Still too weak for platinum she has now been prescribed the EGFR resistant drug Afatinib as a treatment of last resort.

[Bow-19]

I have had 4 cycles of permetrexed and cisplatin prior to starting the maintenance therapy. Both seem to have been effective in reducing the tumours. I found the permetrexed and cisplatin wiped me out more and left me unable to do very much. The maintenance therapy is a lot better and my quality of life has improved significantly. We have been for holidays in the UK. The plan is that I stay on it until it stops working or I cannot tolerate the side effects. Then move on to an ALK related treatment regime.

[topgun]

Yup! Not too many side effects for me - only sick twice, but that was over two cycles. Around days 6/7 I don't feel like doing much. Oncologist has reduced dosage by a 3rd due to my Creatine level being too high, so some concern over state of my kidneys. Do find slopes and stairs to be hard work, having said that I've just got back fom a weeks holiday and only declined to do Corfe castle and Glastonbury Tor as the access paths were too steep. See my Onco on Monday for results of CT scan and then hopefully my 5th cycle of Pemetrexed on Wednesday.

[Hidden]

Dear All,

Thank you so much for your responses.

I had been asked to write a submission to the Scottish Medicines Consortium, (SMC) on behalf of patients, for the use of Pemetrexed as maintenance therapy following good response to first line treatment with platinum doublet chemotherapy.

The SMC is the Scottish equivalent of NICE, and look at many factors when deciding on whether to fund a particular treatment, however 'value for money' plays a key part in making this decision.

I have included your comments and hope that the SMC looks favourably upon funding the drug.

Best wishes,

Beth, on behalf of Information and Support.

[topgun]

Just out of interest, the only way I can receive Pemetrexed is via the Cancer Drug Fund. Here's a link to the Current NICE policy: nice.org.uk/guidance/ta309

[topgun]

Just left my Oncologist with the happy news that the Maintenance is working well. It has stopped the primary tumour growth, shrunk the Mediastinal nodes and the armpit and neck nodes no longer show any signs of disease. His conclusion is that I am in partial remission. The reduced dosage of pemetrexed has also reduced my creatinine levels to below critical.

5th cycle will go ahead on Wednesday

[Hidden]

Hi Topgun,

That is fantastic news, and more evidence to support my submission to the SMC.

Fingers crossed.

Best wishes,

Beth.

[Falv]

I was on pemetrexed maintenance chemo for a couple of months last year after 4 cycles of cisplatin / pemetrexed. Pemetrexed alone didn't work too well on me unfortunately.

[Hidden in reply to Falv]

Hi Falv,

I'm sorry to hear that.

I hope that you have found a treatment that is working for you.

Thank you for taking the time to respond.

Best wishes,

Beth, on behalf of information and support.

[Bow-19]

My tumours have continued to shrink or have disappeared with the maintenance therapy. Next scan is 19th September and am expecting more positive results. X rays show shrinkage every 3 weeks.