Confused re scan results.

Hi Ian436,

I'm sorry that your results appear to be a bit ambivalent.  I would be very confused as well if someone told me that the tumours growing slowly was good news.

I'm also not clear what your oncologist meant about the side effects showing up when you have no symptoms of illness?  I have no symptoms from my cancer but only the side effects of the treatment and I think that this would be the same for many people.  The side effects can be significant for some people but then why would she be telling you that you could manage on the highest dose?

Just a couple of comments about my situation.  The STAR trial I am on should have closed already as it has now lasted over 5 years but was extended as everyone on the drug had done much better than expected and they extended it to see if they could get any more definitive results, but only by about 6 months.  Hopefully the results will be published in the near future.  I have put a link to the trial details here.

However, I have also been on the highest dose of 800mg of Pazopanib daily from the start and other than the scheduled treatment breaks have never had to reduce this.  I understand that a lot of other pazopanib users have discussed and negotiated with their oncologists to get a regime which works for them in balancing the side effects and treatment.

The protocols in the trial means that the tumours have to have reduced in size and remained stable for me to have the break.  When the scans show that they have grown a certain amount I go back on the meds, normally after three months after my first scan.  My last treatment break was the first time I had 6 months break as although the tumours had grown, according to the protocol they had not grown enough to class them as unstable.  This was the first time I had a break knowing that the tumours had already started to regrow.

Is there anyone on your medical team that you could discus this with?  As I am on a trial I have a research nurse I can talk to but most people have a cancer nurse specialist they can talk to to try and understand the reasoning better.

I hope that you can get some clarity soon to help you with your decision.

All the best,

Gragon xx

Well Ian436 I dunno what planet your oncologist is on, but mine said the 3 weeks on n 1 off is quite common.

Maybe it's just different in this part of the world?

I expect to get my results on 30/7 so will keep fingers crossed till then. 

Good luck re next scan Ian436. I would take comments re 800mg of Pazopanib with a pinch of salt. There are so many in this group who have had to reduce to 600mg.

Gragon I got a reply from Macmillan nurse saying this was a normal protocol if in the opinion of the experts quality of life would be better delaying treatment and I do have the option of starting treatment if something does happen. It’s weird if I hadn’t been told it was there I wouldn’t know. I’ve no symptoms but that was just the same as when I had my nephrectomy no symptoms then either. I know if I start taking Pazopanib then I will have side effects and the worry is they will be bad, then I read your posts and see how well you are doing so should I just bite the bullet and start or take the experts advice and hang fire. I noticed on your posts that beer affects you now. Have you tried gluten free beer to see if that helps. I don’t drink much beer at all, single malt whisky is my thing. You don’t get bagged up with a few drams.

Ian

Ian436

Hi ian,

It is difficult to make a decision when you cannot know the consequences of the treatment.  I do know that I have been very fortunate with regards to side effects.

To be honest I had not thought of the gluten in beer.  I used to struggle with heartburn and pastry was terrible for triggering it but so was wine, to the extent that I rarely if ever drink wine.  I am trying to cut back on bread but that is because I am fat and eat too much.  Not helped by the fact that I am baking currently and bake a loaf of bread every couple of days.

I have had a couple of bottles of beer at home over the past few.months with no significant impact.   However I am not currently able to eat broccoli.   I have had it twice since going back on my meds and spent a large part of the next day in the loo.

I have not thought of trying gluten free beer.  I seem to be ok with beer at the.moment but will bear it in mind if it occurs again.

I tend to drink spirits at home and beer if I go to the pub.  The ones I drank recently were ones that came back of our holiday last year.

I hope that you can enjoy a whisky or two tonight. 

All the best,

Gragon

Gragon, I’m glad you can enjoy a pint but it might be worth a punt with gluten free if problems do start again. Although I am not on any medication yet I have stopped taking milk and am now using and preferring barista oat milk. Great in coffee, porridge, cereal, and although I still like normal coffee I have bought caffeine free and really enjoyed that too. I can’t even tell if is caffeine free. As long as single malt is okay that will be fantastic as well.

Slainte, Ian

Gragon, having a dram now.

Slainte, Ian