The Roy Castle Lung Cancer Foundation

Is there anyone out there?

Hi, I noticed there have been no new posts for a while and don't know if that's a good thing or not. Whilst I'm here, a quick update ......had my second round of Carbo/Premex last Thursday and was out of sorts on Sunday for two and a half days but have now bounced back. I mentioned to my oncologist about the mouth ulcers after the first round so she reduced the Premex dosage by 10% and so far no pesky ulcers, what a result! I feel if I can lessen the symptoms by the tiniest margin then I'm winning part of the battle. The lovely LSN rang today to see how I was doing, I told her all was okay. She gave me the news that I tested negative for the ALK gene as was the same for EGFR. I asked about other genes that are routinely tested in the States but the reply, as you're probably are all aware that we don't have a targeted drug that has been licenced yet. Why are we so behind with research? The nurse also said that after the four rounds of chemo and a CT scan that they will put me on Alimta maintenance. Is anyone currently on it and if so what does it involve and more importantly what are the side effects. Hope all you lovely special people are enjoying the sunshine. Take care and hugs to you all. Moni x

5 Replies

Hi Moni,

I am also on the Carbo/Pemetrexed chemo. I have one more round to go and then on to the maintenance every 3 weeks. Not sure if the side effects will reduce but I have been told that it is the Carbo part which messes with your bloods so as I have had lots of problems with a low WBC I am hopeful that I will be able to get on a regular 3 week cycle.

Take Care Sue xx


Hello Moni

Good to hear from you. I think there have been some teething problems with the site upgrade. We will let you know more as soon as we can.

Research into lung cancer is something we are championing and there are some interesting developments we hope will improve treatment options.

best wishes



Sorry about any problems people have been experiencing. I'm just posting some info about the upgrade.


Hi Moni, good to hear that the ulcers have stopped giving you gip. I thought that the site was experiencing problems as well as I had not seen anything, but hopefully it will continue to improve along with yourself. So glad that you are sounding better and hope things keep going well.

Regards Rabbie


Hi Rabbie, great to hear from you, I thought I was the only person left on the site due to teething problems. I hope that things are going good for you. My oncologist reduced the last round of Pemextred by 10% which seems to have stopped those pesky ulcers appearing. I have third round

this Thursday and a CT scan in August prior to 4th round. Will let you

know result of scan and providing all is ok I'm going on Alimta maintenance and am waiting to hear from anyone else who is on Alimta and of any side affects. Take care. Moni x


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