Clinical Trials only option left for my very ill mum

Hi all,

I have posted on these forums a good few times before and have got some excellent comfort and advice.

Sadly, I think my mothers long battle with cancer is coming to the end, and tears are streaming down my face as I write this.

My mum was dx with breast cancer in 2003, which then came back in the bones in 2007, and in the liver in 2009. The liver tumour then came back 2010, after being on herceptin for 2 years and oral vinorelibine for the initial liver mets diagnosis in 2009 . She tried capcitabine before but was very allergic to them. She has been on taxol since Dec 2010, and had 18 long sessions, which only ended 6 weeks ago. She had scans after each 6 and the first 6, and 12 worked very well, with the cancer shrinking quite significantly, however the last 6 made no difference and the cancer remained static. The oncologist was quite optiministic initially and told us to go and book a holiday (me and my mum go away together each year)

That was 6 weeks ago and she is now back in hospital with a very swollen liver and excess fluid around her body. We were meant to be going to Menorca tomorrow for a week together, and we both splashed out on the resort etc, as we both knew time would not be on our side. It breaks my heart that we won’t have that last holiday together. The oncologist said yesterday that treatment options were now limited, and only if my mum wishes, she can try clinical trials at the Beatson in Glasgow, however we all know that it might not improve anything, but part of me wants to be selfish and keep her here to try the trials. But will this work? Or only prolong her misery for longer, as since the end of last year my mum has not had much of a life, and has had to rely on me and my OH to do things for her. As a result she is very frustrated, and it hurts me so much to see my independent mum deteriarate so much.

My mum is only 64, and I am 31- it was only the 2 of us since my dad left when I was 2, and I don’t know what I will do without her. I have a fantastic OH who has been ny rock, so I do have support from him and friends. I was 23 when my mum was first diagnosed, and I guess because she fought it so well over the years, that I put death to the back of my mind. Yesterday the oncologist wants to organise a palliative care team to help, and I think my mums wish is to go into a hospice to be looked after.

Do you think my mum should try the clinical trials? I don;t want her to give up, but I don’t want to force her to do anything she doesnt want either. Any advice/thoughts are much appreciated.

Thank you, and sorry for the morbid post.

Nicola xxx

Hi Nicola
I really wish I could suggest yes or no for your question - I am so sorry I really do not know the answer, but I just wanted to say to you how much I am thinking of you (my Mum too has breast cancer) and I am sure your Mum must be so comforted to have you supporting her through all this.
Sending you a big (((((hug))))) and I hope someone comes along soon who can give you better advice.
Esbee x

Thank you Esbee, just trying to find the inner strength to be there for my mum, as it breaks my heart to see her so unwell.

Whatever the outcome, I just want her to be at peace.

My mum and I have had a few honest conversations over rge last few weeks, and we have no walls when it comes to discussing how we are feeling. I think my mum is more worried about me and how I will cope without her, but she says that I am the best thing that has ever happened to her, as she lost her own mum at 30.

I just feel she is to young to die, but can’t watch her go through this any longer.x

Hi Nikki,
I am sorry to hear that your mum is so ill, I also can’t give you an answer but I hope you and your mum come to a decision soon.

Thinking of you both.
Lizz xx

Thank you Lizz xxx

Hi Nikki
I cant give you any advise on the very hard decision you have to make but my thoughts are with your mum and family, but for what’s its worth whatever decision you both make will be the right one for all of you. Keep strong xxxx
Sue

Hi Nikki, I can’t give you any advice but thinking about you both, love junieliz x

Thank you Julieiez and Sue xx

Hi Nikki

Please accept my sincere sympathies to you and your Mum.

When my time comes I hope to be swamped with warmth, confort and love. That is what I wish for. I think I will know when I have had enough of the treatment, your mum will probably know that too, go with her decision.

Sue x

I will Sue, thanks for your lovely words. I love my mum so much ans she knows it- I have been by her side all my life, and I want to be wo
ith her until the end, no matter what her decision is.

Thank you again

Nicola xx

hi nikki, im so sorry… and i read your words with tears running down my face… no one can make these choices for you love, it must be you and mom who decide, its so sad . some people will decide to go on trials and attempt anything and everything that is offered, in the hope that a miracle will happen… others… decide to spent whatever time is left at home or in a hospice surrounded by loved ones, im sure the decision you make will be the rite one for yourselves, sending you and mom lots of love and warm hugs xxx angie

Hi Angie,

Thank you so much for your post- its just so hard as I am not in control of anything anymore, and my poor mum is so tired- it seems so unfair to put her through anything else, but I still want her to keep fighting, the way she has sone since 2003.

Going up to see her in the hospital this afternoon, and hopefully they will have drained some fluid from her abdomen to make her more comfortable. I’ll just need to take each day as it comes, bit I fell so physically sick at the thought of losing her.

I tell her I love her every day, and she knows she is well loved. I am not particularly religious, but I have turned to god to help us, and my mum make the right decision.xx

Hi Nikki,

So sorry about your Mum. I lost mine to cancer last month after 4 years of treatment. She was given the option of a last go at chemotherapy a few weeks before she died. She was very tired and weak by that time and in the end she declined. It was entirely her decision but she did ask me what I thought because I’d had chemo and knew what it could do, so I know how hard it is to give advice in that situation.

The only advice I can offer is that, once she makes her decision, whatever it is, you must accept that it is the right one. “What if’s” serve no purpose (and no beating yourself up about it). Of course she is too young, but having been with my Mum constantly in the last few days of her life I firmly believe nature ensures your Mum will be ready for it when it does come. We humans are amazing creatures and you will find your inner strength when it’s needed for your Mum.

I am very lucky to have sisters and we’ve been a great support to each other. I feel for you being an only child and you will need the comfort of your husband and friends.

Thinking of you. Hugs xxx

Jan

hi nikki… i hope mom was feeling a litle more comfortable after your visit. you have some very heartbreaking times ahead… your mom knows how much you love her… as you know how much she loves you too. and yes of course you want to be with her, and you want her to carry on fighting… she wants to be with you too … im sure of that… it is one of the hardest things in the world to have to watch someone you love with all your heart suffer … i lost my mom 25 yrs ago… also to cancer… but there came a time when i and others could see that she was loosing her battle… from somewhere acceptance comes to the sufferers… i dont know where from … but it comes and they accept … also strength comes to those who care… again i dont know where it comes from… somewhere deep within …im sure you will get the strength you need to do what ever is needed sending you lots of warm hugs to you both xxx angie

Hi Nikki,
so very sorry to read your post. As the others have said, only your Mum, supported by you, is able to make the decision. Of course you don’t want her to give give up, but I am sure that whatever she decides she won’t be giving up, rather she will be making the choice that gives her back a little bit of control and some say in how her life on earth draws to its close. She is so blessed to have you walking with her and loving her so much.

My Dad died when he was 65 and I was 27 - so a long time ago, and I know I sometimes wish I could talk to him now that I am a middle-aged woman, but if I am honest, he was very ill (he didn’t have cancer but the illness he had meant prolonged treatment and deterioration) and I wouldn’t have wanted him to suffer.

I firmly believe that your Mum will not be taken from you until you are able to cope with that loss - whether that is sooner or later - and that when the time is right it will be a release for her.

I found the folk at Beatson very kind and helpful when I was treated there, I so hope you find the support you need.

Sending you both a cyber hug and praying for you as I type.

To Jan, Angie and Rev Cat

Thank you all for your lovely words- I get a huge amount of confort from them.

I went up to see my mum at hospital tonight and they have drained 5 1/2 litres of fluid away from her abdomen, so she is feeling much relief at that. She is still not eating very well, but I am hoping that improves in the next few days with the fluid away. She is hoping to get out of hospital tomorrow, and if she feels up to it, my OH and I will take her to his mum and dads caravan in the south of scotland fo a few days to give her a change of scenery, and a break for all of us.

We are due to see the oncologist again on Thursday, and whatever decision my mum makes will be the right one for her. I know her quality of life will not improve dramatically, whichever path she takes, but I will be with her every step of the way. Somehow today I have found an inner strength I did not know I had, and I need to keep strong for her.

I will keep you all posted and I thank you all for your lovely words- I admire you all.

Thank you again

Nicola xx

Hi Nicola
I’m glad your mum was comfortable when you saw her. I do hope she gets out tomorrow and is able to go away for a couple of days. I will be thinking of you both on Thursday please give her my regards
Lizz xx

following on from angiem-my dad was very ill with a lung disease-he asked the doctor"tell me the truth-am i conking out ?“the dr said-” i can carry on treating you-or i can make you comfortable"-my lovely dad said"just make me comfortable"-we were devastated-but -we had a good 10 days with him-lovely times revisited-he died a comfortable death-and that’s what we remember now-best wishes to you both-so sorry xxx

Thanks Lizz and Ethyll- my mum might not be getting out today as she is taking shivery turns which wont go away, and her temperature and blood pressure are high. I just pray that she gets more comfortable today. Will keep you all posted.

I hope I don’t upset anyone with my post…my mum has done well to survive this, as when she was initially diagnosed it was grade 3 breast cancer, and it was very aggressive. She has been a true fighter, and I think her spirit has got her through.

Thanks for your lovely words

Nicola

Dear Nicola,
I am so sorry to read that your Mum might not be getting out today, hope they can sort out the shiveries soon so you can have some good time together. They will have to check out whther or not she has infection first, I guess.
I don’t think you should worry about what other people here are feeling, because you have explained the introduction to the situation in your thread title, we would only be coming in here if we are feeling strong enough. People/maybe I just mean me/ are responding to the love that you are showing your Mum, and thinking how we/our families would react.
Sending you some hugs
Lavender
xx