Hello Gill, and thanks for your post,

It is good to hear that your Lonsurf treatment has not had too much of an impact on your busy life with any unpleasant side effects. We have an information sheet on this drug which you may find helpful to read here

Whilst your scans remain static and your CEA is at a good level the doctors may want you to carry on with the Lonsurf once your neutrophils have recovered particularly as you have had such a good response.

Because you have been on treatment for such a long time it is not surprising that your neutrophils need time to recover.

I would talk through any concerns with your oncologist. The only other thing you could do is to try and get a second opinion from another oncologist though they may have the same opinion.

You are welcome to ring the helpline nurses if you want to talk any of this through with us. Our helpline number is Freephone 0808 800 4040 and we are here Monday to Friday 9 am to 5 pm.

All the best,

Catherine

Thank you for your reply Catherine.   I have talked through with Oncologist, he won't change his mind.  He is the only Oncologist locally and because I am looking after my husband, unfortunately cannot travel to London for a second opinion.   I saw a doctor at a London hospital several years ago and he agreed I should have treatment as I felt so well.   

Hi  Gill i have just today been switched from Irinotecan to Lonsurf and was encouraged to read the positives in your posts as to how you are managing your treatment with Lonsurf any information or tips you can offer would be greatly appreciated i will be starting Lonsurf 25/9 indefinately and even after an hour with my oncologist this morning am still a bit unsure , but i liked your posts content and your "throwing in the towel comment" as i also feel to well to do so my name is Douglas and i have metastatic cancer in my liver which has grown which is why we are moving to Lonsurf , hope to hear from you  and keep up the fight and take care

regards

Douglas

Hi Douglas, I was so pleased to receive your message.  As I said I have been on Lonsurf for fifteen months and really whilst initially disappointed to have my various  IV chemos stopped and concerned about 'only going on tablets'  it seems to be working for me and I have 'carried on as normal' !    The only thing that has let me down is my Neurophil count, white cell count and platelets which has resulted in a  one week  dellay between each cycle.    My frustration has been that I feel so well but the Chemo Ward have to obviously follow the Protocol and spoke to the Oncologist accordingly, hence the reduced dose.   I also have metastatic spread to the liver and peritoneum.   I don't have any negatives from my point of view (apart from the reduction in dosage) but I fully understand how you feel after your appointment this morning     - it is a lot to take on board when you are not expecting that conversation.     I would say that I am careful i.e. still wear a mask so as not to put myself at any unnecessary risk of infection.     Please come back to me at any time to talk things through, knowing I understand

Kind regards,

Gill

Hi Doug, I send you a reply a little while ago but I can't see it has been send, Can you let me know if it arrives ?  Gill

Hi Gill 

I am so pleased to hear from you and you have cheered me up instantly as i couldn't find much positive patient feedback anywhere online  , i to have the liver and peritineum metastasis although my liver is the only measured tumour at 24 mm , i too feel very well and am a very positive person , i have posted over the last 3 years on the oesophogeal forum  and offered others a lot of non clinical support on that thread (around 250 posts), however i suddenly found my self anxiously  searching for positive information on Lonsurf and low and behold i found your good self , i would really like to keep in touch with you if thats ok once i start the treatment on the 25th if thats ok  , god bless you and yours and as i mentioned before any advice would be welcome.

kind regards

Douglas

Hi Douglas,

I'm pleased the reply went through to you.    Please do keep in touch at any time, even if it is before the 25th if you think of anything just get in touch.   I normally just 'press on' but on this occasion I wanted to know what the Nurses felt about my trying to get my dosage back to what it was previously.    My Consultant wouldn't budge and I see him again at the end of October, so 'onwards and upwards' for both of us Douglas.   Thank you again for making contact - I saw their were 108 views but nobody had been in touch with their thoughts.....

Kind regards,

Gill

Hi Douglas,

Wishing you all the best for Monday; please don't worry but if you want to run anything past me, please do.

Kind regards,

Gill

Hi  Gill

Thanks , i have a two day delay to my start date , thanks for your offer of support i am sure once treatment starts i will be in touch looking for any hints and tips you can give me , i have been struggling with low mood and energy recently when i was on Irinotecan but that has been sorted out more or less , take care and i will contact you again next week once i have started treatment.

kind regards

Douglas

Hi Douglas,

I have been thinking of you and wondered how you were ?

Kind regards,

Gill