Change of medication

Hi

I’m about as much use as a chocolate teapot on this but I wonder if Gragon might be of help? I know it’s great to be involved in these decisions but I do think it’s so hard to feel well enough informed to do so. The list of side effects is always daunting and the data on effectiveness is hard to understand. 

Good luck! 

Xx

Hi ,

Sorry to hear that the pazopanib has stopped working.  I see my oncologist today for my latest scan results so this will only be a brief response I'm afraid.

Like you were I am on the Star trial but as the medication is still working I have yet to face this choice.  I was advised some time ago that the TKI's all end in "nib" and the immunotherapy ones "mab".  Having been on the trial you know that they try to give your body an opportunity to recover from the effects before restarting the medication.  As a consequence I would personally lean towards the immunotherapy as it uses a different mechanism to attack the cancer and if I had to go back to a TKI again afterwards, hopefully the cancer would have lost the ability to adapt as quickly to it.  Please bear in mind that this makes sense in my own head but I am not aware of any medical evidence to support this.  Against that is the convenience of simply taking tablets rather than intravenous.

I know from the discussions in the kidney cancer group that lots of members appear to get on very well with the Nivolumab and experience few side effects despite the long list of them.  I'm afraid I don't know a lot about either medication other than that.  I haven't had the opportunity to look at the kidney cancer forum yet but hopefully you have posted there as well and will get some more informed responses

One of the things that concerns me about changing medication is coming off the trial and losing the support of the research nurses.  I know it might seem minor but I have been with them now for four and a half years and the thought of having to get to know a new person makes me a bit anxious, will they be as readily available? Will they be as knowledgeable? Will I get on with them?  Will they understand where I am coming from?  Have you asked your nurses what they would recommend and why?  Hopefully your new nurses will soon make you feel comfortable.  I know some of the other cancer care nurses in my hospital and the seem nice but I have not had to deal with them yet.  A daft thing to worry about on the scale of things but it is not always logical what we worry about is it?

I wish you all the best with your decision and your future response to your new medication whichever it may be.

love and hugs,

Gragon xx

Hi Gragon

good luck today hope results are good and you stay on Pazopanib. Over this last year my mets have grown very slowly and on the trail they say once it gets over a certain size they prefer to switch as it’s starting to not be as effective, so i,m still on the trail but have to meds’ to decide. I do like the Idea of tablets as your free to get on with things but I do understand what you are saying regarding treatment change for the body as it would get used to them. I will have the same nurse which I am grateful for as like you they get to know you and you them very helpful. Just now deciding, my husband wants me to try the tablets as we are due to go on holiday 9th sept but which ever I choose don’t think it will make a difference as oncologist said i’d Know within the first 2 months how I am before we are away...my mind is blown as Pazopanib was doing good for 3 years

best of luck today, everything crossed for Paz 

hugs

daisy 

Hi ,

It's been a frustrating day.  I complained a few months ago as due to staff changes and the reports not getting the priority they should get they were not written in time for my consultation and indeed could be a couple of weeks late.  As you will be aware this is no good for the trial.  Today the report was not ready but for the more mundane reason that the person writing the report got the date wrong.  He then realised that he would be on leave when it needed writing and had to rush about trying to find someone else to write it.   Genuine mistake but still annoying given the circumstances and previous problems.  It means that I will yet again receive a phone call and a copy of my report but, unless I am prepared to go for an extra appointment, no discussion with the oncologist.  It is the twelve week check so luckily I would just be continuing on the medication anyway.  If it is no longer working then waiting a few more days for the report will not make much difference but then I would have to go for a consultation.

Then to add insult to injury the Pazopanib is dispensed centrally from 44 miles away and they claimed that they had not received the prescription so my medication was not available.  The research nurse was able to prove that the request was sent so now they are sending the meds direct to my home to be delivered tomorrow by courier.  What a waste of NHS resources.

So, no report, no meaningful discussion regarding my cancer or treatment, no medication.  Lots of frustration and a few under my breath swear words as it was not the fault of the person telling me.

And to think that I thought having an incurable disease would be easy!  Ah well, keeping on keeping on.

All the best,

Gragon xx

Sorry to hear they are giving you extra stress. We seem to have to fight for everything and waiting for reports is very stressful.

my oncologist said he would apply for funding for  me to have venatiniib that was over a month ago and I have heard nothing I don’t even know if he has submitted the application.

mean while my 94 year old mother  has just died and I was her carer and now have all the paper work and phone calls and funeral arrangements to make when I am upset.

All extra stress 

love Ruth x

Dear Ruth,

Thank you for your post.  I am so sorry to hear about your mother, I know that you had said she was not well and were worried about her.  All the practicalities when someone dies can just grind you down at times, I hope that you have someone who can help you out with everything that needs doing, including chasing up your oncologist.

Thinking of you and sending you lots of love and hugs.

Gragon xx

Hi Gragon

That sounds a supremely stressful day. As you say, it kind of makes no difference to what’s going on in your body and if the results don’t change the medication then really, so what? Except, except. There’s the emotional labour of preparing mentally for scan results and a meaningful discussion with the oncologist only to be left flat when that’s not possible. Then there’s the undermining of the sense of security that things are under control. There’s the waste of resources - including the research nurse’s valuable time in chasing the drugs, the radiologist chasing someone to report on the scan, - and i don’t imagine for a minute that the person telling you (junior doctor?) wants to go to work to explain why the job has not been done. 

Anyway. Today’s another day. Hope it’s a good one 

xx

Hi ruthjp

I am sorry to hear about your mum. Please accept my condolences. I do hope there is someone who can help with the arrangements and paperwork. 

I hope you can get an answer soon on the venatinib funding. It can be a long wait though - it took my consultant six months and four applications to get me on to a new drug under compassionate use. 

Xx

Oh Gragon, what a frustrating and stressful day. As Daloni said, there's a build up to these appointments that we can't escape, and we're in such a vulnerable position. I said a few swear words on your behalf. I think the face to face discussion with your Oncologist is an absolutely vital part of the process. I arrived at the hospital last week to be told my appointment had been cancelled as I'd been seen 2 weeks earlier. I felt the floor disappear from underneath me, as it was to discuss whether or not to restart oral chemo. It had been cancelled by mistake, so after a long wait I was seen, and restarted treatment. Wonder what would have happened if I'd just gone home.... Good luck with your results xx

So sorry for the loss of your mum. Difficult enough at any time, but in the middle of what you're already going through, you're really being put through the wringer. I hope you've got lots of support to get you through. Much love xx