Bad news

Dear. Heather, I am so sorry to hear your latest news. Stopping treatment is something I think about a lot. My treatment has never been curative and has been life extending only. After my last relapse I now consider it to be palliative as there are no other options for me when it can no longer keep the symptoms of my blood cancer at bay. I’m a quality of life person so I always balance treatment and it’s side effects against that criteria. It’s a hard decision to make but as long as it’s a informed one then it’s yours to make. You haven’t failed, as far as I’m concerned cancer is random and I take no responsibility for the fact that I can’t be cured.

Dear Heather

Sorry to hear your news. I just wanted to offer my support

Love and courage

Xx

Dear heather 

such a difficult decision for you to make .You have not failed in any way ,the bas—-d disease is random , not your fault . I always say I haven’t killed anyone ,done nothing wrong,as you haven’t  .i haven’t reached a palliative stage yet ,but can only imagine the thoughts and feelings you are having 

kindest thoughts 

janet

xxxxx

Hi Heather

Bad news indeed, I'm so sad to read your post. I'm afraid I haven't any experience of making a decision, the type that you're facing. 

Like Johnty, I have a blood cancer and so far as my Haematologist says, I'm very lucky that the treatment I'm having is working on keeping my cancer stable, although no doubt I'll be looking at that decision in the future. Sometimes I forget that. I've mulled it over in my mind several times and I reckon I'll take any option offered to me. If that helps you make your decision then that's fine, you know how you feel yourself. 

In no way have you failed, far from it. I hope that Wednesday comes and your oncologist hss turned up a new trial, I'll be crossing everything for you Heather. 

Take care my dear

Tvman x

Oh Heather

I was so sad when I read your post just now! You are right, you are not thinking rationally at the minute or you would not be thinking about saying you have failed, especially after all the treatment, surgery, trials etc you have already been through!  Like Tvman, I would try anything they came up with as an option for me. However there has got to be a balance of quality as well as quantity and only you know when you have reached that stage.

In Sept 2016 I had been on the trial drug I was on for over three years and the side effects were getting intolerable. I had a discussion with my oncologist who suggested stopping treatment for 3-6 months to give me a chance to recover a bit and I would get scans every three months. I know I have been very lucky, as I'm still here but also know the day will come when I too will have to make a difficult decision, as my cancer is also incurable. The oncologist told me Malignant Melanoma does not respond well to chemo but in saying that, if it was my only option, I'd give it a go. Then decide whether to continue or not, once the side effects (if any) kicked in and were making me feel very ill!

Only you can make this decision with the support of your family but I would recommend dropping in at your local hospice and talk things over. They are amazing. I wonder if you are already in touch with them. I have everything in place for when that day comes and am at peace with it all! Please let us support you through this as best we can, with whatever decision you make. There might not be too much I can do but I will always be here if you need to chat! 

When you are meeting with your oncologist on Wednesday, I will be in hospital having a lump removed and a biopsy done, Daloni will be having a scan and so it goes on. I will keep you in my thoughts and prayers!

Thank you everyone for your kind responses, it makes such a difference, you are a lovely bunch.

i still don’t know what I will do but both oncologist and hospice counsellor have said take your time, get over the shock, so I will take that advice.  I also like the advice of perhaps starting chemo and seeing how bad it is.  I had Carbo/taxol last time which was nasty but maybe this one would be better.  I may also go for a second opinion, not because I don’t trust my consultant but so I have lots of information.

the thing is, I feel so tired....why do they always want you to make decisions when you are tired lol

anyway thank you to everyone, sending you all my love and best wishes for any hospital appointments this week xxxxx

Dear Heather 

I am so sorry to read this disheartening news. That decision is so hard and one I may have to decide soon (Though slightly different). 

I'm on chemotherapy which has had amazing results but at a cost as i do not tolerate it well at all. I've had 4 and could have 6. However my bloods go so low every time and doesnt recover properly between cycles, so it will likely get worse. 

I can switch to immunotherapy, but with no markers and only 1% of PDL1 marker I doubt it will have much effect.

It's a hard choice and neither option is what you would like, but you are between a rock and hard place.

I guess as i always say dilemmaring is you do not have to commit to all the cycles. You could try one and see how it goes side effect wise.

Sorry to read this Heather and sending a virtual horsey hug to you.

Dear Heather

I just want to send you my best wishes positive thoughts.

You are so brave and I'm sure you will make the right decision for you.

All the best.

Patricia

So sorry to hear about your news to have not failed do not beat yourself up on that way off thinking personally for me i will take any thing to prolong quality of life that has been my goal since I started chemo seven months ago and yes you have more bad days of feeling ill than good days of feeling ok especially for me as I have to have chemo every week so by the time I start to feel ok by Wed my next round is Fri and I am back to square one but I will keep fighting on for as long as I can and you must also do this do not give into it I know it's easier said then done sometimes you have to do what's best for you mine is also a rare cancer to deal with I love in hope that one day these fantastic cancer research people will find a cure on the news over the last few months a cancer that was not curable is now curable this is also what we all have to think off there is progress everyday i hope you keep fighting on in a difficult situation my thoughts are with you every step off the way lots of love and cuddlesxxxxxxx

Dear everyone, thank you all for your wonderful replies, I cannot tell you what a boost you all gave me, and some good advice.

i saw my consultant today and she was amazing as always.  I am signed up to start carboplatin/caelyx chemo (probably before Xmas, awesome timing) and will have 2 lots of that, if that doesn’t work then onto weekly taxol with Avastin, and then there are also 2 clinical trials in the offing.

The chemo I am starting only works in 5% of cases but we both agreed it was worth a shot. That decision was helped by all of you so thank you very much.  I can stop treatment at any time I feel it is too much.

sending you all big hugs back xxxx

ps  we are having our treatments the opposite way around.  Don’t think immunotherapy won’t work for you because you don’t have the marker, I was told there’s not really obvious markers for it, it all seems a bit random in the way it works, sometimes people without that marker see good results, so I have high hopes for you.....sending you a horsey hug back x