Coming off trail to start new treatment scary

Hi ,

I hope everything goes well for you on your new treatment and you manage to get a named contact as well as a phone number.

I was contacted by the research nurse last week asking me to make sure that I brought my completed questionnaire to my next appointment as they had been asked to gather up all the research and forward it to be analysed.  She suspects that the Star trial is coming to an end and they are preparing to report on it.  I'm not sure now where this leaves me regarding my contact.  If there is no more research then presumably I will no longer be under the research nurses?  I have lots of questions now for the Oncologist and the nurses at my next appointment in addition to the usual lots of questions that I normally have.

All the best,

Gragon xx

Hi Daisy, 

i hope your new treatment goes well. Do they maybe have a social worker, counsellor, or psychiatrist you can speak with. I started seeing the cancer social worker at our cancer clinic. I find it somewhat helpful. However, I fully understand what you are saying.  I actually said that in my last appointment because “I’m incurable and a little more complicated than most because of all previous treatments and current health issues I feel like the drs have pretty much already written me off”. What a horrible feeling. I hope you find someone caring and understanding to speak with.  Keep up the good fight! Just because they say it’s currently incurable that we are palliative do t give up. Someone has to be the first to be cured right? Maybe it will be someone i this group. Maybe you. So keep fighting stay strong! Take care

I wondered when the Star Trial would end. I also wonder if the report will make a difference to treatment protocols for Pazopanib. It must be worrying for you Gragan when you’ve had such good support. I have to say that our oncology nurses have always been at the end of a phone and it made the difference to me staying on Pazopanib in the turbulent early days. Hopefully you and others on the trial can get equally good support when the trial ends but I realise that it probably depends a lot on where you live. By the way, I’m being treated at NCCC in Newcastle.

Hi ColeD74,

I don’t know if you saw my post in April but, I was incurable for over 5 years and was then told by my Oncologist that I wasn’t anymore. My cancer is now inactive! So you see even as incurable there is still hope. My oncologist did say that it is unusual to go from incurable to inactive but that occasionally it does happen. I just thought it might give you all some encouragement to hear this.

love and hugs

Maggie xx

Hi ColeD74,

I don’t know if you saw my post in April but I thought I would just let you know that I had been incurable for over 5 years. I had an appointment with my oncologist and he told me that I was no longer incurable, my cancer was now inactive. He did say it is unusual for it to happen but that occasionally it does. I just thought this might give hope and some comfort to you all.

love and hugs 

Maggie xx

Hi Maggie,

That is fantastic. I always hold onto hope. Everyone’s biology is different so who knows how one may respond or what treatments may become available that work. When I was stage 3 Hodgkin’s lymphom30 years ago I had what was than experimental protocol and I have never relapsed from that one. My survival was not good but yet here I am. Attitude goes a long way. People may not think so but itruly does. I have every intent of beating this. Just got to get the drs on board. Thanks and hugs back.  Strange the hug symbol is automatically putting it in more than one place. I only placed the end one the other two just plopped in lol. 

Hi 

I know nothing about the star trial but I do know about the amazing care patients get at the trials units.  I think going back to the routine care would be like going from first class on British Airways to Ryanair. I feel your pain. 

I get a lot of support from the home hospice nursing team. I have a regular phone call with them and it’s really helpful. When I spoke to them six weeks ago I was at a very low ebb and it really helped to offload. I talked to them again today and it reminded me of how far I have recovered since I finished the chemo a month ago. I know I can call them anytime. 

 - the same thing happens whenever I try to use emojis. I wonder if there’s some besuited gremlin hiding in the system muttering “what’s wrong with using words? Bah humbug”. More likely a technical tch though  (drat. There it goes again) 

xx

Hi Gragon,

it went well today got all information I need but know one nurse to speak to but a 24 hour number if any problems but my nurse I had on the star trial said I can ring her if I need anything too. I Have been started on 40mg Cabozantinib and they have given me 2 weeks worth as they want to repeat bloods and blood pressure and to see how I am coping then I go back another 2 weeks after that then tHe should know if this drug is suitable and I am coping ok as she warned me I will get side effects as more toxic than Pazopanib. If for any reason I cannot cope or body don’t like it I can then move To  Nivolumab but I am hoping I can manage but I will more by next week as I start tonight 

fingers crossed that they just need your paper work back to send off and you’re results are stable, maybe they have filled all the places at your hospital on the trial as that’s what they did were I go as their is only so many places I think so if all stable hopefully you should just carry on. Let me know how you guest wishes

Daisy ok

Good Morning ,

It's good to know that you have got your support sorted out and that your trial nurse is still available.  I remember the anxiety of waiting to see what side effects I would get from the Pazopanib and you have my sympathy in going through this again.  All the best with your treatment.

I have been on the Star trial for four and a half years now and I think that the places at my hospital were filled some time ago.  It is complicated as I am seen at Scarborough by Oncologists from Hull but I believe the trial is administered from Leeds.  I was advised by the trials nurse that at Scarborough there were only two of us left on the trial as the medication had stopped working for everyone else and they had moved onto other treatment.  I guess it is a limited number of people who outlast the trial so I will have to find out what happens if this is the case.  I think I know the protocols better than the Doctors and nurses now as I sometimes have to remind them when I am due scans or treatment breaks so I could probably administer it myself by now.  I'm just not sure how I would manage to get my CT reports on time!

I know what you mean about the different levels of service .  The oncology department at Scarborough is quite small and unless you are going for chemo all the patients use the same waiting room.  As I have been going for so long now I do know some of the other nurses and have had a bit of banter with them at times but it would not be the same as having a dedicated team with specialist knowledge that I can contact.

As for emoticons and Daloni.  I am a man of 57 and I think you do very well to get any emotions out of me at all, the thought of my machine randomly spitting out emotions that I may or may not be feeling or wanting to express is quite alien to me.  However I would like to know if there is a "Grumpy old man" emoticon available?  I might use that one if there is! …..but not this morning.

love and hugs to all,

Gragon xx

The emojis have been broken since July last year, when they 'upgraded' the site. It's 'on their list' to fix......

    - Grumpy

- Old man

Lol

Lass

Xx