Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Update

Lynn2
Posted by

Hi everyone, long time no post lol. 

As some of you know i had three infusions of Pembro last year that did shrink my Lung tumour and got rid of the cancer in my lymph nodes but caused havoc in the rest of my body so had to be stopped.

It gave me an over active then under active thyroid for which i will always be on medication for, it also gave me severe Imunnotherapy induced Colitis which had me in and out of hospital from last September to March this year with uncontrolable diareah. I had two infusions of Infliximab which the gastro team had been trying out on patient with Chrons disease and this has worked and stopped the runs. I cant have any more imunotherapy treatments as my body is too sensitive to it.

I recently had a scan that shows my tumour is growing again and after speaking with my Oncologist  who said she has only Docetaxel to offer me at the moment which i don't want and won't be having, she then said she will send me for a PET scan and if the cancer is not visible in my Lymph nodes she will arrange some radiotherapy or Spot welding as she called it.

There was some confusion as to how much it has grown as she said the radiology report didn't make sense and contradicted itself so she would be asking for a re- report on my scan !!

She also said she would arrange for a biopsy for the Matrix trial as the last test didn't have a large enough sample.

Its my five year diagnosis anniversary this month and i have just been getting on with life and making lovely memories with family and friends. Now though all the doubts and fears are back, how long have i got left ? how quick is it likely to grow ? Will i be well enough for my holiday in Scotland and my 60th birthday later this year ?

I have also started with severe lower back pain that they can't find a reason for and they have put me on Oxycodone six times a day which really helps.

I have to go back in 3 months unless the Pet scan shows i can have the radio in which case she will send for me. I have asked her to see if i am eligable for any other trials as well.

I hate been in limbo with no treatment options apart from one i don't want and all the unanswered questions floating round in my head.

Most of you are in a similar position so i know you understand and i thank you all for listening. Lynn 2.

Lynn 2. xx

Tinalay
Posted by

Oh Lynn, I’m so sorry you find yourself in unknown territory again. No one can deal with unknowns, having a plan is so important to all of us.

i hope there will soon be a treatment plan for you that will keep

you well, and take you well beyond your 60th birthday in Scotland, and you can keep enjoying life and making special memories xx

Tinalay 
ColeD74
Posted by

Hi Lynn

i completely understand the frustration I’m stage 4 Mantle Cell lymphoma was diagnosed in March still no clear treatment plan in place. Seeing a specialist in Toronto Canada July 15th hopefully get plan in place.  I’m sorry you’re sitting in the unknown.  Take care hopefully you will have a plan of action soon.

ColeD74 
daloni
Posted by

Hi

That all sounds ghastly. What an unpleasant time you’ve had of it. My thyroid got knocked off balance by cancer treatment but I was able to get off the meds after a year. It kind of bumps along the bottom these days and they monitor it so I will know soonest if I need to address it again. 

Thank goodness they managed to sort out your diarrhoea. Even a day or two leaves me washed out so I can’t imagine what months and months of it must be like. 

As for the rest of it, well, can I suggest planning on being around for your 60th and the Indian holiday? You might as well. The alternative is simply too dreary. 

Lots of love 

xxx

Lynn2
Posted by

Just letting you all know the radiographer had got it wrong and the measurments she reported were a  "typo " you couldnt make it up !!! the oncologist sent me a letter saying there was actually only a miniscule growth in the tumour and she will send me for a scan end of september then see me in clinic in ocober for results. Hope you are all enjoying this spell of nice weather we are having, All the best, Lynn 2 xx

Lynn 2. xx

daloni
Posted by

Well that’s good news . Although seriously? A typo? I guess it’s worth being grateful it wasn’t the other way round. 

I do hope you’ll be able to relax into a great summer and enjoy planning for your 60th 

xxx

Lynn2
Posted by

Thanks Daloni, we have a lot planned this year, we are away at York meadows this weekend, we have a week in the caravan in August with about 25 extended family in tents vans ect, we did it last year and it was great fun. Then in September we have a cottage for a week on South Uist in Scotland with our good friends from Cumbria.We have a few classic car show weekends in between too which we take the caravan to. My 60th is November and i have decided to have a party at home with food drinks ect. Terry is due to have his Aortic valve replaced sometime in the next 6-8 months so we aren't planning anything beyond that at the moment. Hope you are doing ok, Lynn 2 xx

Lynn 2. xx

daloni
Posted by

That sounds like Operation Have a Great Summer is taking shape nicely, ! What a lot of lovely plans you have. 

Yes I am good right now. I have a had a partial response to the clinical trial - some tumours shrunk, some grown but no new disease and overall there is less cancer in my body than in January. I am staying on the tablets for now, next scan in mid August. I am picking up strength after the chemo and generally feeling as though my own Operation Have a Great Summer might be successful 

Lots of love

xx

Lynn2
Posted by

Hi Daloni, thats good to hear, Hope your Summer is a good one xx

Lynn 2. xx