Question for wise ones!!

Joinmelb

Please note, I have copied this across from the private group as I only had one response so thought I'd post it here too!

Hi there everyone, 
Merry Xmas, happy new year and all that jazz!
I've got a couple of questions and thought I'd head straight to the experts!

I was diagnosed with metastatic bc (bones only) in December 2018 and put on Kisqali & Letrozole/Anastrozole since then.
In December 2021, it was discovered I had a few more lesions in ribs so I did a clinical trial to "radiate the shit" out of the pesky ones to hopefully remain on Kisqali for longer. Unfortunately, when rescanned in May this year it was discovered that the radiation had worked on those spots but I still had pesky new tumours forming. So after 40 rounds of kisqali, I had to find a new option! 
I was offered a few different treatment options but decided to throw my hat in the ring for the CAPTURE clinical trial - I figured with all the genetic testing that was required I probably wouldn't be eligible anyway, however, I jumped that hurdle but then scored the control arm of the trial. This is oral chemo, capecitabine, which I started in August. I started on 4 x 500mg tablets in the morning and 4 at night, a huge dose. Scans at the 8 week mark showed shrinking tumours but due to nasty side effects I had to drop down to 3 tablets morning and night, but still side effects so am now on 2 tablets twice a day with the last scan showing stable tumours and no new ones.
My questions are this - for those that have been on a clinical trial - how did you put up with the scan-xiety, I'm usually only scanned every 6 months via a PET scan (and don't tend to worry at all about it or focus on it at all) but this is every 8 weeks..........it's literally hard work trying not to think about it?
If you have participated in a clinical trial - how did you work out when enough was enough? For reference, I'm a single mum aged 44 with 2 teens, with no help from their father at all so am doing allllllll the work drop offs, the school runs etc and still managing to work 3 days a week. It has become much, much easier since my eldest got her licence etc and can help out but this shouldn't be up to her! I'm having to swap work days and swap everything else around to accomodate the clinical trial as I'm required at the hospital from around 9.30-3.30 every 3 weeks. If I come off the trial, my option is the fulvestrant injections monthly or I can just do oral chemo without the need for appts every 3 weeks and scans etc every 8 weeks. I like the fact that I'm helping the research but am so so so worn out by it all. Would love to hear others experiences with trials and fulvestrant injections too!
Many thanks for reading this novel!!!

Joinmelb xoxo

arpie

@Joinmelb

Terrific that you got onto the trial.   I can't help re your trial questions, as the 'trial' offered to me was to reduce the treatment (no radiation) so I declined ... But I am wishing you all the best with your ongoing treatment ... take care 

It is great to hear that the capecitabine has shrunk the tumours & made them stable & no new ones .... tho the side effects are quite nasty - My husband was on it & mainly had really nasty peeling feet .... his meds were reduced too and it became more manageable.   

@wendy55 may be able to comment re trials xx

Zoffiel

@Joinmelb

Clinical trials are a lot of work for all concerned--lives and careers hang in the balance.

I think you should hang in there for as long as possible, but I also think you should talk to the trial coordinator, or the contact person assigned to you, about your concerns. Really talk to them.

There is always an expectation that there will be some 'attrition' over the length of the trial, but I'm betting they won't want to lose you and the data you represent. There can be too much focus on the career side of these things, but there would also have been an undertaking on their behalf to look after your general wellbeing. Negotiate with them.

In order for research to be credible there has to be consistency in the process, but that doesn't mean it's all a one way street. There has to be some flexibility because humans are not machines. Grueling treatment and monitoring schedules are tough enough without having to manage a complex family life at the same time. 

If this works it could be life changing for you and others who will find themselves in a similar situation in the future. Thing is, they are called trials for a reason, there are so many unknowns. Those unexpected findings, positive and negative, need to be acknowledged and built into any conclusions, so it's really important to give all the feedback you can during the process. Good on you for getting involved in the first place. MXX

Joinmelb

Thanks all for your wise words, I'm not sure if I made it clear enough but I scored the control arm of the trial so am not on the actual trial drug - I'm on the standard treatment so there is a little bit of the feeling "jibbed" part too. It is also messing around massively with my skin - I suffer from severe eczema and am under a dermatologist for that - also have to fit in UV treatment 2-3 times per week for my eczema. I cannot do any more than I'm already doing for my skin and risk is, if I have a flare up, I end up with cellulitis in my arm from lymph node removal and usually end up in hospital for a week to 10 days so it's not just a simple matter of "dealing with it" and putting up with it per se.  Already on lifetime antibiotics for that and being closely monitored by infectious diseases team for the ongoing cellulitis issues!  So it's A LOT!!!!!  Will book in another appt with psych to chat through but just wanted to hear from others like I said. I appreciate everyone taking the time to respond xoxox

Zoffiel

Ah, my apologies, I didn't process the control bit. I should have read your post more carefully, sorry. 

If you can't see any potential benefit, apart from maybe a feeling of social responsibility, give it the flick and move on to another treatment that might suit you better. You've given it a crack and need to do what you think is best for you in the long run.  As previous, they do factor in that patients will leave for one reason or another.

Suze6

I think you have contributed a lot already - a lot. Sounds like you have done it tough but still showed up - that’s really fantastic. You absolutely don’t need to do more. Opt out. Look after yourself. There is absolutely nothing wrong with that. I would focus on what you have already contributed to the field and be proud of that. That in itself is so much more than for eg I have done. And I also think that leaving the trial is in itself good information for the trial. So even that will contribute especially if you feel able to be really honest about why you are exiting. And finally, women tend to feel so much responsibility and we continually keep going. I think a man would have given it the flick a long time ago and not persevered through hardship like you have. It is more than time for you to think of yourself and your kids. All the very very best ❤️.

brightspace

Hi For me  as 7 yr Met patient I have not had any chemo or rads yet 

My site has been lung only 
6 mth Scan results due nxt week

started double therapy in 2020 on kisquali tablets 200 mg. And fulvesstrant inj ...some side effects with back pain and tiredness

I am retired so no fuull time work

Feel I have been very lucky with this combi

Time will tell how long it lasts

I do have some anxiety with results due

But not major I have taken anti anxiet meds but no need yet

Always keep busy my motto
3-4 k walking my best exercise