New on here

Hi Sandra. Welcome to the group, but sorry you find yourself here. My cancer is a rare one too, so I do understand what you mean. I was diagnosed 12 years ago, and have been incurable for 7 years. In all of the time I have been a member of this site. I have only spoken to 2 other ladies with the same cancer, and I am only the 2nd patient my oncologist has treated. 

I am not surprised that you are feeling washed out by the treatment.  Chemotherapy really does take it's toll. I hope you get some good days between the cycles.

It took me a while to adjust to my new me. I went through a stage of mourning for my old life. But slowly you do adjust, and by talking to people here and realising that you can have a good life with incurable cancer, will certainly help. 

Wishing you all the best for the treatment, and the MRI scan.

Take care x 

Thank you, reading this helps somewhat 7 years incurable, it’s very hard, I’m not sure what myself is at the moment All the best for now. Xx

I get what you mean. In the year that I was termed terminal two brothers in law had both been told they were terminal and both had died within 12 weeks it scared the hell out of me. Here I am nearly two years later still incurable and still being told they believe it’s years not months before I go. I hope your treatment works and stabilises your tumours 

Hi, I was diagnosed with a rare cancer and told that I was incurable in November last year, this group has been really helpful  to me, it's great for when you need to rant but there is plenty of cheer here too. 

Hi Sandra

Welcome to the group you will be pleased you joined they are a good bunch.  I haven't been on the site for a while for family and personal reasons but saw your message today.

I was diagnosed with anal cancer at the beginning of 2019 and had chemo-radiation as you did I think that is the standard treatment - I was declared NED in January 2020 and then found out a couple of months after that purely by accident as I wasn't due a CT scan until December 2020 it was in my liver -so had chemo and liver re-section in December 2020. I was ok on the day of chemo but felt ill a couple of days later and then improved and felt myself again in time for the next cycle but it worked.

Feeling well at the moment original tumour I called "Quentin Tarantumour" has long gone and not likely to return now and my liver is completely clear but have been told that it has popped up in my lungs very tiny and barely visible as yet so they want to wait before starting treatment but will be having more chemo soon so still classed as incurable but treatable. 

I think there is only one other person on the forum with this type of cancer so we are indeed a rare breed - if you want to pm me or I can help in any way let me know.  I see you are friends w Nikki65 so I presume you were originally on the anal cancer forum - me too but I haven't really been on there since the cancer came back - I felt a bit of an outsider after that but I do keep in touch w Nikki.  Do you know what chemo they have recommended?  It sounds like it is working. 

Chill out and be kind to yourself.

Good luck with the scan.

Debbiex

Hi Debbie

Thank you very much for your message it is much appreciated, it sounds as like me you have gone through a lot and it’s not any easy journey. I had my 3 rd cycle of chemo yesterday and have my pump on now until Saturday. The chemo I have on is Cisplatin & Flourouracil in the pump. Once I’m feeling my brain is working probably after next week I will pm you.

once again thank you for your message it helps to know there is someone else with the same cancer. Hope you keep feeling well. 

sandrs x

Hi

No problem - whenever you feel you want to x

Oh good luck Sandra. I found Cisplatin very hard to cope with. Get plenty of rest.

Stuart x 

Dear Sandra, I am very sorry for your diagnosis. I expect you are in a bubble of shock and disbelief. I really hope that you find this group a source of comfort and also practical advice. It's not an easy path, sometimes we have to learn to be kind to ourselves. Gentle hugs to you, xx

Hi Sandra

Just thought would touch base and see how you were doing x