Change of medication

Hi Ruth

I am so sorry to hear about the loss of your mum. I just hope you were able to enjoy some of your holiday first.

In regards to the wait to hear about Lenvatinib my oncologist applied and it took over 2 months to hear back with the initial No and then had to reapply so it took over 4 months before I got the yes. It is very frustrating not knowing but you might find you oncologist has applied and it is all waiting for the meetings where they make the decisions and these are not on a daily basis.

I am temporarily off Lenvatinib as I went home a few days after I saw you and then I have bounced back into hospital with 3 different infections which I am being treated with so they felt it was better to just put the Lenvatinib on pause to allow my body to fight the infections fully. I will restart once I am home and fighting fit again.

Thanks for the message. I will have to be patient waiting for the result about the funding.

Hope you feel better soon and fight the infections ok.

Thank you.

yes there is a lot of paperwork but I am gradually getting through it. I also have to clear the house.

It will all take time .

love Ruth x

Thank you for your kind thoughts it is a difficult time but a I am coping better than I thought.

i May wait until,after my next scan before i chase  the  lenvatinib xx

Hi Gragon

sorry to hear you had a bad appointment and that you didn’t get to see your consultant. Hoping they get their act together for when you go back for results of scan! 

I’m surprised your hospital doesn’t dispense the medication their as it’s another thing to do to your day traveling for meds. 

Do you ever keep an extra bottle case you don’t receive your Paz in time? Peace of mind if you could.

Hoping your medication turned up with no problems and your doing well and yes having an incurable disease you’d think they’d get their act together ‍♀️

all the best 

Daisy ok

Hi ,

Thank you for your thoughts.  I have now received my scan reports and they are generally good.  Most tumours have shrunk although I have another 12 weeks to see if they shrink enough for me to have a treatment break.  One of the tumours has actually grown but only slightly so it may not be significant.  The one thing that I would like to discus with my oncologist is that it refers to an oedema of in the right side of my abdomen - cause unknown.  I have some discomfort when trying to sleep on my right hand side which is probably partly explained by this.  However, it doesn't say how extensive this oedema is and I would like to know how big it would have to get before they do anything about it?  I could ask for an additional appointment and I have no doubt they would fit one in but I already have my next appointment as I am seen every six weeks anyway so I am happy to wait to talk to them.  It would probably be a different matter if the report was a bad one but then they would be unlikely to just send me the report.

I'm not sure of the protocol regarding the drugs but I know that the main pharmacy is at another hospital 44 miles away and the hospital I go to has a pharmacist who deals with all the medication for the trials.  Although Pazopanib is in regular use I suspect that as this is a trial of how to take the meds it is more tightly monitored and controlled.  However, over the course of my treatment I have had some unscheduled breaks for minor surgery which means that I have not been able to take my meds for two weeks before or after the procedure.  I do therefore have enough meds to cover any shortage.  I doubt the protocols would allow them to prescribe me any meds before I have been reviewed.  Although they know I have extra tablets I don't remind them unless they ask directly.

All the best,

Gragon xx

Hi,

this all sounds good and seems the drug is helping.  Hopefully the oedema won’t be too worrying for you.

i asked my oncologist about the lenvatinib request and he said the pharmacy are doing the coatings but have had it a long time and he is chasing them up now..

meanwhile my Mum has died and my husbands  sister in law who we know well. We have ended up with 4 funerals to go to in the space of 2 weeks. All a bit much the one in Devon is the day after my mums. I am the executor and have to clear and sell the house and I am very upset about my mum who I did everything for .

Ruth