Switch to maintenance pemetrexed after only four cycles of pemetrexed/cisplatin?

[Esme85]

Hi,

I would be grateful for any help / experiences of this.

Initially my mum and I were told by the oncologist that my mum would receive 4 or 6 cycles if she could tolerate it of cisplatin and pemetrexed. She has NSC lung cancer with bone mets which (thankfully) has responded reasonably well to the first 2 cycles of chemo (this is the most recent scan).

She is due her 5th cycle on Thursday but the oncologist rang yesterday to tell her she would be getting maintenance pemetrexed only on Thursday instead.

My mum questioned him and he said there’s not much evidence to show additional benefit from another 2 cycles and that it increases fatigue, potential side effects.

She felt he was waffling and asked why he had changed the plan but he was adamant the plan hadn’t changed. Confused as to why he would suggest 6 cycles (and after doing some reading, cancer research website among others say you may have 4-6 cycles).

I wondered if anybody had any advice / experience of this or perhaps a definitive answer from Roy Castle?

Thanks very much,

Esme

[Mrscancer]

Hi Esme, I was told the same 4/6 cycles only had 4 then went onto pemertrexed maintenance. That was over 2 and a half years ago. I’m now onto my 38th round of maintenance chemotherapy and doing well. Just had a CT scan awaiting results next week. Wishing your mum all the very best Christine x

[Ailsu]

Hi

My daughter had same experience oncologist never said number of cycles but lung nurse implied 6. My daughter age 17 at diagnosis had 4 cycles of pemetrexed and cisplatin. I think not enough gain and oncologist wanted to give my daughter Kay better quality of life which it did. She had 13 pemetrexed maintenance with only 2-5 sick days with each cycle versus 14 poor days with cisplatin and pemetrexed. So she was able to attend college and started University in September. She could never have achieved that on the combination as too ill. Is your Mum ALK positive?

The pemetrexed became less effective and now on crizotinib 4th month working well. She is treated at Weston Park Sheffield x

[Esme85]

Hi, thank you both for your replies - both so positive as well.

Mrscancer - 38th round of maintenance, fantastic to hear. Best wishes for your scan result and Ailsu - so wonderful your daughter has been able to start uni.

I’ll pass on the info from your messages to my mum and hopefully that should reassure her a bit. X

[Bow-19]

I had 4 cycles of cisplatin and permatrexate, then maintenance permatrexate for 12 months. Cisplatin is platinum based and very strong and has left me with kidney damage. I would listen to your Consultants advice and not push to stay on cisplatin for too long. Has your mum been tested for mutations too? wishing her all the best.

Definitely less side effects for me too with permatrexate maintenance it only took about half an hour every 3 weeks compared with 8 hours every 3 weeks Xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Esme

It is understandable how this may be confusing and that your Mum would like a bit more reassurance. There have been good responses from the forum and it may be that the Consultant is considering what may give your Mum a better quality of life. Although a treatment plan has been put in place, this can change during the course, allowing for the best care for the person concerned. Perhaps call the lung cancer specialist nurse to discuss this.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Lung Cancer Foundation