Hello again, long time no chat.

Hi Gragon

I'm currently at the end of my first cycle of Lenvatanib and Everolimus. So far I have very few side effects. A slightly sore mouth and loss of appetite. I too managed the side effects of Pazopanib very well. I also had 4 cycles of Nivolumab (immunotherapy) which did not work for me. I only have one tumour in the area where my kidney was removed in 2016. I’m putting my hopes on this combination work, for both of us!!!

All the best xx

Hi DaisyL,

Thank you for your reply, it is much appreciated.  As you say, hopefully the treatment goes well.

Wishing you all the best,

love and hugs,

Gragon x

Hi Gragon

Lovely to ‘see’ you again. You were so kind when my husband was first diagnosed and I posted in here gosh, back in 2017 I think? He is also on Lenvatinib and Everolimus, since September last year. It’s been a bit rocky to be honest. He’s had a lot of stomach issues, culminating in a complete treatment break for a couple of weeks at the beginning of Feb. He’s since back on Lenvatinib at a reduced dose, and is only just back on the Everolimus now, working back up to a full dose. He has found being basically housebound because of the diarrhoea the most difficult I think. We are in NZ and he felt so guilty missing summer with our 13 year old as he just couldn’t reliably go anywhere.

But on the plus side, it does seem to be working, and he is stable disease at the moment (Mets in spine, ribs, abdominal cavity, liver, lymph nodes). They are referring him for further radiation on his bone Mets in his ribs as they cause quite significant pain, but other than that, no further spread.

Wishing you well

Bronwyn

Vulpes

Hi Bronwyn

If I remember correctly we had a conversation about the relative costs of Pazopanib and Sunitinib where you live.  I've only been on my new treatment for four days but so far have managed to accrue two headaches, 1 bout of diarrhoea and a full day asleep.  So far my blood pressure is holding steady but I know that most side effects will not kick in immediately but will build up.  Hopefully I can cope OK.

I'm sorry to hear that your husband has struggled with some of the side effects but really pleased to hear that his cancer is stable at the moment.

I know how he feels about not being able to get out with your son.  My son is now 16 (17 next month) and I struggle with my mobility.  Not directly because of the cancer but because the treatments I can have for my hips are limited by my situation.  At the moment I struggle to walk more than about ten yards without having to take a rest., forget long walks in the country or on the beach I can barely get out of the car par.  It does make you feel remarkably guilty, not helped by the fact that my son is so understanding of it.  He deals with it so well it then makes me feel even more guilty that I am underestimating him.

I hope that your husband feels better after his radiation sessions.

love and hugs,

Gragon x

Hi Gragon

It is exactly as you say, our daughter is very very good about it, which as you say makes it almost worse! She plays a sport very competitively that my husband represented his country in as an adult, and he has coached her school teams since she was about 6 and has been very involved in the sport and they played together in a family team too. But by the middle of last year he couldn’t manage it anymore (to be honest how he managed that long is amazing) and that has been so hard. He got such joy from it and I feel very angry that it’s all difficult enough without being robbed of the things that feed your soul, to make the journey bearable. And our daughter hasn’t once complained or been miserable about it, even though we all know how much she wishes it could all go back to how it was. 

Haha yes! Med costs. Well, we’ve paid for Sunitinib, then ipilimumab and pembrolizumab, now lenvatinib and Everolimus. I think we’ve spent about 350 k in NZ dollars in 3 years. The only thing we don’t have to pay for so far has been the radiotherapy treatments. And hospital stays. 

there are compensations though, I’m just about to get him out onto the deck to sit in the sun and watch the sea and listen to the gulls.

kia kaha (stay strong)