Lonsurf side effects and results

Hi

Welcome to the forum although I am so sorry to hear that your husband has not had the desired results with chemo .

Longsurf has been discussed here a few times . If you use the search function you could read back on how others have found it .

One lady reported a very good result on behalf of her husband where other treatments had failed and he seemed to tolerate it very well if I remember right . Some of the side effects do seem to be rough but that can be very subjective as it also depends how well they were before starting on it . It sounds as though your husband is keeping strong . 

I wish him all the very best . We are here for you too as we know just how difficult it is to watch someone enduring all that treatments bring .

take care,

Court 

Thanks for pointing me in the right direction Court you have been so helpful. It’s so hard to know what to do you keep hoping.... my husband sees his consultant on Tuesday so we have the weekend with the family to talk things through. He is a tower of strength and his only concern is for me and our son and daughter. Thanks again for your reply Fee

Hi

All the very best for Tuesdays appointment and hope the family were helpful in coming to the right decision. 

Hope is such a powerful driving force and sometimes it brings good results with it .

If he proceeds with longsurf I wish him every success . For a subgroup of patient’s it does seem to be a game changer . 

Thinking of you both as these meetings are emotionally draining at times .

take care ,

Court 

Hi , I'm  also new to forums.  I'm basically  in the same boat  as  your husband . I've stage 4 metastatic colon cancer,  which has spread to my lungs .

I'm due to have lonsurf as a third line treatment  next week and quite honestly  I'm terrified.  . I'll  be thinking of you and your husband this week  with your appointment  with the oncologist. , hope  it all goes well. 

I'm trying to stay  positive  , and I hope that the knowing that there are others outside of your family helps. 

With all my best wishes.

Hi  pussycat26

thank you for your thoughts. I already feel a huge support here in the group was really  struggling when I first posted so hopefully you will find the same. I can only imagine how terrified you are you sound so strong and hopefully lonsurf will be a positive step for you. Let me know how you get on keep strong and stay positive it’s the best medicine. 

Thankyou Court  for your continuing support. It has made such a difference to how I was feeling. 

Best wishes 

Fee10

Hi ,

If you have read ‘s story it’s very encouraging . I have just given her a little ping to see if she is around and could maybe help reduce some of the fears of starting on this treatment.

Take care,

Court 

Hi. I have stage four bowel cancer with extensive mets to the liver. I have just completed my first course of lonsurf which is the first of three then a scan. This is my fourth different chemo treatment since being diagnosed in Feb 2018. I find the side effects are very similar to the other treatments like nausea, abdomen cramps and fatigue. I should find out how within the next 10 weeks if it’s working or not but the early signs to me are looking good. Hope this helps.

Steve.

Hi 

 I have  stage 4bowel cancer with lung Mets, in both lungs

I was originally  diagnosed in  2015, but found  in 2018 that the cancer had spread and was  now in both lungs.  

I've had 2 lots of different  chemotherapies plus radiotherapy.  I'm on my first cycle of 6 of Lonsurf .

I haven't  had many side effects as yet, slight nausea,  abdominal  cramps and fatigue, but nothing I can't  cope with.

I am unsure if lonsurf will work for me , but I'm at the stage  now that it's worth trying .

Have you been  offered any trials?, the only one I was told about was in London , but as I live at the other  end of the country  it wasn't  a viable option .

I wish you all the very best and fingers crossed  that lonsurf works for us both .

Keep your spirits up .

Pussycat 26

Hi pussycat 26. I asked the consultant what would happen if lonsurf didn’t work for me and he said he would go back to Christie’s and see if there are any new trials to try. I have got my 2nd lot of lonsurf tablets today and some new anti sickness tablets as the metoclopramide tablets aren’t stopping the nausea most of the time. They said the new anti sickness tablets are better and should reduced the pain from the abdomen cramps as well. I will give it a few days and will let you know how I get on with them.

Best wishes

Steve. x

Hi Fee10, 

Just thought I'd  have a little  catch up , to see how you and your husband  are doing. ? 

I hope that  things are going ok ,and you are staying strong and positive .

I started my 1st cycle of Lonsurf last week and it hasn't been too bad , slight nausea , and  fatigue  but  nothing I can't cope with  at the moment , but only time and a scan will tell .

Sending you and your family  my support and best wishes for the future .