Hi,

Glad to hear you have a clear plan in place and that there seems to be a positive way forward. I hope the treatments are effective for your mum and she copes well with them. Sounds good to be part of a trial - hopefully it will help your mum.

My dad is at home and trying to remain somewhat active for strength and eating as much as he can. They are using PET scan to check brain so hoping that comes back clear. His cancer is squamous non small cell and they said it is locally advanced which according to google is stage 3 but my mum/dad didn't ask about stage. 
 

It's all just so surreal and the waiting for the next step seems to last an eternity. Just hoping that they can start treatment soon and give him the best chance to beat it/manage it x

Hi DD85

wanted to check in and see how your dad is doing,

and how was the pet scan results ?

my mum

is suppose to start treatment next week chemotherapy & immunotherapy keytruda is the name of the therapy,

we looked in to the stem cell research and I had one of my friends whose high up in pharmaceuticals look in to it, 

but my mum was not keen on going for the trial it was a phase 1 not tried on anyone , and there is a high risk of  blood clots, the phase one is trying to determine what dosage to give people,  and she would rather take the safer option of the other stuff offered , as with a. Drug trial phase 1.  We do not know much about anything working, as there was non of that info provided in the paper work, 

told my mum to ask questions to the oncologist but I think she had made her mind up, she said she be to scared that she die of a blood clot (as this is what my dad passed away of when he was 46 years old) 

So we have been waiting for the treatment to start this has been a long wait since end of March when the first blood tests were taken and the scans begin of April,

I just hope this waiting time has not effected anything,

please let us kno how u are getting on,

sending my love to u and your dad xxx

Hi Rosie2008,

Thanks for checking in....glad to hear your mum is starting treatment, I really hope it is successful and she can beat this. It seems like she gave good consideration to the trial and you did the right thing to get advice...I'm sorry to hear about your dad, it must be difficult for you both to hear the treatment can be linked to blood clots and it seems like it would be too painful for your mum to go with the trial...I guess it's important that she made the decision on what she thought was best for her. The waiting is definitely so hard...we are finding the same.

My dad had his PET scan last Friday so we don't have the results yet. They have ruled out surgery as it is in his lymph nodes. Due to his platelet count being low they are concerned about all the treatments at present...however, his platelets seem to be back to normal and he is off medication - heamotology seems to think it could have been a reaction to the Covid jab. We are hoping his blood results will show his platelets are normal since being off medication and he can start treatment ASAP! Like you we are concerned about the consequences of waiting so long from diagnosis to treatment, especially as the consultant seemed to think the tumour had been there for months not years...very concerning what has happened to the mass in the mean time!

Hope you are holding up well, it is so emotionally draining!

keep in touch x