Stage 4 hope 11 1/2 years later !

Hi Bud, apparently it is not available on the NHS at my Trust anyway, which is a disgrace really. It may be available at other trusts I don't know. I believe it stops the blood vessels feeding the tumours. Hope you are OK as possible.

Xx

Bud 18

This one really grates with me as it used to be available through the cancer fund ! Instead of restricting it too the sun group who benefit from it they removed it lock stock and barrel !

To add to the complexity different trust charge vastly different sums of money for it !

However it really can help !

Take care ,

Court 

Ps Bud 18 how did your treatment go ? Are you doing ok ?

Court 

Hi that's awful to hear that. 

I doing OK week 1done still feel OK can flagabit after busy days like today walked the dog 3mile then went clothes shopping with mum now don't wanna do anything lol

I still get nettle hands, but it's okay,

I only had steroids for 3 days didn't like them, as wanted to be on the go the whole time, think I may have them again after next infusion not sure. 

I think it disgusting about that drug, so really your OK if you have money as you can pay private, well I think I will be with the majority of others as althou not skint as I work full time but could not afford that, 

Bud xxx

How are you

Yes it is very unfair that a drug that can help people like us is unavailable on the NHS. Can't believe it, very sad. I am waiting to start lonsurf but I have to see the surgeon first about palliative bowel surgery to avoid a bowel obstruction.

Not looking forward to that!

I remember those prickly hands very well on CAPOX, horrible. My hands are OK now. I just drop things a bit and don't have a very strong grasp anymore. 

Xxx 

Xx 

That’s pretty good going Bud 18 you did loads yesterday ! Well done ! No wonder you wanted a rest after it ! As my mum said through chemo you need to listen to your body !

I can completely understand them not giving Avastin to people with other chemo options that work but I never understood why they did not ring fence it for the sub group that it worked better for who have less options and actually that means they are getting less financial input than someone who has more chemo options !

Plus it seems a complete disparity financially depending on where you live if you self fund !

Rant for the day over but I rant ever year about it ! When my mum was first diagnosed she could not access biological agents in Scotland! The cheapest way to access them was for us to rent a house in Newcastle! We seriously would have gone down that route if that was required!

Things changed for the better so I have seen that happen too ! I am hoping the scientists have a pipeline that is starting to deliver ! 

Are you heading out today ! I managed a good walk last night and the rain just went off ! However quite a hard frost overnight and a nicer day today !

Court 

I think  that cancer patients don’t have such a strong lobbying group ! They have treatment to endure but it always makes me sad too! 
Have a good day today !

Courtv

I asked another stage 4 patient to explain the leap-17 clinical trail to me as I was not quite understanding how it would work ! This is their explanation ( not a dr or anything just patient that is a bit more informed than me ) 

Just thought you might be interested and now I understand a bit better why Avastin works better for some people ! 

Seems they are looking into it across a few different primaries! Let’s hope so as it’s a phase three trial here ! 
Take care ,

Court 

I do wish there was a patient user friendly  leaflet on how all these different drugs worked ! We used to have a lecturer in cancer on the boards and he was fantastic at explaining everything!

Have a good day !

Court 

So a wee update on the research !

First lot of samples sent ! Questionnaire completed which I noticed there was quite a lot about diet and probiotics which we all now take !

The question they are looking to answer , does my mum’s tumour have a protein that causes her body to identify it as a virus thus eliminates it with the help of chemo !

It has always confuses me how two people with the same cell type , same treatment can have such different results !

Now for the bloods to be sorted out ! You can imagine how much she does not want to do that part after 35 scans but for the greater good she will do it !

Have a good day everyone !

Court