New treatment delayed

Bummer!    

I'm in Fife.  I regularly visit Glasgow as my daughter is studying there.   I just had to google Beatsons (Gartnaval?) as I realised I had no idea where it was!  Such a minefield of hospitals in Glasgow but I believe they're all centralising at the QE now?  

I had rubbish liver function too.  It was what led to the scans and the rest is history.  Liver back to normal now but I don't know why.  

At least things are moving in the right direction and an emergency appt sounds good ie soon-ish?  Fingers crossed for you.  

Hi Ian436,

 I have been on Lenvatinib 4mg and Everolimus 2.5 I actually have two tablets a day so I am on 8mg of Lenvatinib, my oncologist said I am on half the normal dose but I take the three tablets every day, I do have a couple of side affects but my consultant doesn’t want me to cut down unless the side affects get to bad than I will have to have a rest from it, I hope they sort you out and you get on your treatment soon.

How long have you been on the combo, what side effects do you have and is combo working

Ian436 if you click on Sandra's bold green name it brings  up her profile and there you will find the answer.  The site is designed like that so people don't have to repeatedly post their history.  

Morning Ian436,

 I have been on this treatment  still April last year, I have no tastebuds, diarrhoea and sometimes I get mouth ulcers not to bad thank goodness and they supply mouthwash for them, my taste went with my last treatment which was Cabozantinib, do you know when you will have your stent fitted and how long before you start treatment.

Sandy 

Hopefully soon, my taste went when I was on Pazopanib but came back when I started Nivolumab. I didn’t know that taste buds went on levatanib. I never had any problems on Paz with sore feet or hands and no sore mouth either.

Hi Ian,

 I had no problems with Nivolumab infusion no side affects I was on that for six months when it stopped working, I went on Cabozantinib which was shrinking my lungs and kidney cancer that stopped working after 18 months and it had spread to my liver, so now I am on the combo hopefully this one will continue to stop growth, I had my three monthly scan last Wednesday so fingers crossed all is well, I have only used the mouthwash once the only problem now is the diarrhoea which I hope to get sorted, I hope all goes well for you and you start treatment soon best wishes Sandy 

I hope your taste buds come back and all goes well with your scan results. Did you start on the highest dose on combo and then drop or were you started on lower dose

I started on the lower dose as my oncologist suggested, I did get my taste buds back for a few weeks before I started on this new combo, but I don’t think it will come back unless I stop treatment which at the moment is not possible Sandy 

I’ve been in touch with a few folk on combo and nobody seems to have problems with taste buds on this combo and hope I’m the same. It’s really unlucky that yours has gone again