want to know how you are ? Not many posts on here regarding Papillion might be the fact that when you mention it to oncologists or Surgens that tell you you will die if you don’t go down the colostomy bag route
im ok thanks this is a head game for me done9 opps to remove a 12 x14 inch tumour that grew around my bowel non malignant and the last opp was told they have found abnormal cells played the waiting game and sure enough it grew like a *** with only option given was colostomy bag which I refused pint blank went to the xxx who refused treatment said tumour to big then went to xxx who said let’s do 5 weeks chemo and radiation shrink it then Papillion great I thought had 2 treatments then lock down happened so have not had final treatment .Having MRI Friday endoscopy end of August and feel like I’m winging the hole thing also feel like *** having some nasty side effects now but was feeling great about a month ago .
Glad to hear things have worked out for you .we were diagnosed around the same time me April 30 th 2019 .
Glad to hear you are good gives me faith but do wish I’d of had final treatment by fingers crossed it’s gone .
You 'have' been having a difficult time and I do hope that things will start to get better for you !
It is good that you managed to have 2 treatments and I am sure they will get you back in soon now for the last one.
If you read through the thread you will see that I am now 7 years post Papillon treatment and, thankfully, still doing well! We are all different and require different levels of treatment but in my case I only had to have 2 treatments so I hope that gives you some hope. I was diagnosed on December 28th 2012 and after the Op to remove the tumour and then the chemo (this had to be stopped as it almost finished me off) and radiotherapy, I started the Papillon around June 2013.
I did have some very nasty side effects, particularly following the second treatment but they were all helped somewhat by different medications so I am sure that your GP, or perhaps a phone call to the hospital could get you a prescription organised for something to help.
I hope that things go well for you on Friday and for the endoscopy at the end of August. Try to stay positive and do contact someone for medication to help those side effects. They 'can' be made tollerable!
If you ever want to talk or discuss anything in more detail I would be happy to help if I can - just let me know. I hope you have plenty of support from family and friends but it sometimes can help to speak with someone who is not so close and has been through the same situation.
wow did not realise you’ve been clear since 2013 gives me hope .
My doctor has said no to a final treatment because of the lock down he has tried to convince me that I will be cancer free but not so convinced .I was booked in for 3 treatments but hay ho well time will tell .
Thank you for replying .May you continue to be cancer free forever .
I finished my Papillon treatment Sept last year(3 treatments) so it is early days for me, but up to my last scan which was in June 2020 I am still cancer free. I hope that this info helps you & that all goes well with your treatment. It is very unfortunate that this pandemic has interrupted it, but I'm sure you will be well looked after once the hospitals can get back to some sort of normality. Feel free to as ask any questions you may have.
I hope you're well. Just a note to say I haven't forgotten about giving you an update. I just think it's too early to say anything yet, but you will see where I'm at with my message to Justine. When I have 3yrs under my belt, I will feel a whole lot better. X
Good morning Justine and thank you for your good wishes! - I too hope that I will remain cancer free forever :happy:
Do speak again to your doctor if you are worrying about not having the 3rd treatment. I always found my doctor and everyone at the hospital very approachable and I feel sure that if another treatment is required they will have you back to do it. It never does any harm though to question the treatments you are beeing given - after all, it is of extreme importance to you and your family!
Try not to worry too much before your next scan and procedure - I hope they both give you good results.
Let me know how you get on with everything and do come back on here if you want to talk or ask anything.
