UK Skin Cancer and Melanoma Patients

[Lucy]

Hi everyone,

I'm just updating really as it helps to write this down.
My friend is in hospital since a couple of days ago. She has had a transfusion, but is unable to eat anything and keep it down, she also had a raised temperature.
We don't know if the cancer has progressed or not, but she stopped radiotherapy about a month ago and dacarbazine finished even before that. She was going to start a Braf trial soon but not sure if she will be able to as they needed her to be up and about, and she hasn't really recovered from the treatments at this point.

I am worried about what will happen now.
Lucy

[Janet2]

Hi Lucy,

I'm sorry to hear your friend is in hospital and has had a transfusion. I hope she soon improves. As she had a raised temperature I wonder if she may have an infection or virus.

If the hospital think her cancer may have progressed I am sure they will do the necessary scans. If it has not progressed, which I hope it hasn't, if she has an infection hopefully she will gradually get stronger. I know one has to meet certain criteria to go on trials and I hope your friend soon regains her strength and good enough health so she can start a Braff trial soon.

Please let us know, if you can, how she goes on.
Best wishes, Janet

[Pip]

Hi Lucy
Thinking of you both
Pip xx

[Lucy]

Hello,

thankyou so much, Janet and Pip for your kind messages. I hope both of you are doing OK too.

She is out of hospital but they found something on her lung...only on x ray so will have scan soon I think to see what it is. There was a small lung met before she started dtic in Nov/dec but obviously she hoped it had been knocked out by that . It's a horrible feeling when the disease is progressing and there doesn't seem to be anything the docs can offer.

Hoping they find something for her to try anyway...there is always hope as long as there's life!

Love
Lucy

[ally]

I'm sorry your friend is having such a hard time of it at the moment Lucy; but as you say "where's there's life, there's hope" - fingers crossed the met on her lung has diminished - but remember if it hasn't some mets can stay dormant for years with no ill effects. Take care of yourself in all this turmoil too hunni.
Ali.xxx

[ruth]

Hi Lucy,
Sorry to hear your friend is in hospital and not doing well. What are the doctors suggesting? I've heard the B-raf trial is promising and really hope she may get on it. Has she expressed her own wishes? I know you've been a great friend to her and it isn't an easy journey. Please know we are thinking of you both.
Ruth x

[Lucy]

Thankyou both...it is encouraging to know things don't have to move swiftly with this disease...however it's been a very aggressive course so far, and hasn't really let up since she has the diagnosis in June. It doesn't seem to be hanging about iyswim.

I'm not sure what they will offer her if she doesn't get the trial...there's limited options I think at this point, which is very scary. I think we all want to be doing something, even if it isn't particularly effective in practise.

There has been talk of Ipilimumab and avastin in the past, also IL-2/leukine but tbh I don't know if she is strong enough to take the side effects of these as they are so harsh.

I suppose we will wait and see what the scan brings up and go from there. I am grateful for all your good wishes and will pass them on to her...she needs a boost to her confidence in beating this thing right now.

Lots of love to you all
Lucy

[Duncan]

Lucy, Hoping your friend can regain some strength where both you and your friend can share some quality moments and for a brief time put this disease into the background.

Duncan x

[Lucy]

Thanks Duncan, I would be grateful for some more time with her, just talking..

It looks like the trial is off, for her, due to progression. The vaccine trial is also out. They've offered her Lenalidomide which apparently isn't that great.

She is in a lot of pain with her stomach, cannot eat, her back is also sore and she has further visible tumors. I don't know what we can do - unless they can give her something effective. I'm very frightened for her now.

Is IL-2 worth a shot? I know side effects can be awful. But I can't imagine just giving up now.

thanks again for all your help and support, it is so valuable knowing there is somewhere to share this.

Love
Lucy

[jaqlyn]

Hiya Lucy,

Sorry I haven't posted until now but I have been following your post and my thoughts have been with you and your friend. I'm sorry the trial is off for her but I hope they find something effective and take away the pain for her. I dont know what else to say apart from I wish you both all my love and best wishes

Love Jacqui x

[Lucy]

Thanks Jacqui, that really means a lot. Thankyou xx

[sadsam]

Hi Lucy

I know its so hard when someone you love and care for dearly is just not getting better. You must feel helpless and its so frustrating I know . Try and stay as strong as you possibly can and give that friend of yours lots of loving (sure you are) and just being there for them will I know mean a lot.

Take care and all the best for you both hun.

Sam xxxx

[Debi_D76]

Hi Lucy,

Just wanted to let you know i am thinking of both you and your friend. I know how difficult it is to be told things have progressed and how helpless it can make you feel. You are a good friend....just continue with that and i have no doubt you will be providing much needed comfort.

Thoughts and prayers are with you xxx Debi x

[Lucy]

Thankyou so much...Sam, and Debi...I have been thinking about you too and wondering how you are getting on. I hope things are getting a little bit easier.

I had a minute on the phone with her yesterday which was so lovely as I've really missed her. She sounded very poorly but there is good news, in that one of the doctors has come up with a mek inhibitor trial (at the Marsden) which is phase 1, but she has a chance to get on that.

I am absolutely determined that she will get onto it and will knock this b*stard disease on the head with it...hearing her was a shock and made me realise how very real this is, and I got very angry with it, the disease I mean, and feel really just desperate that she gets better - I hope this feeling means she will. Her Dad is trying to get it sorted out for her as quickly as possible, working really hard and making loads of phone calls.

I don't think they have even tested the tissue sample yet so they had better bl*ody get on with it!!! I also know the drug companies have the final word on who gets in, and am praying that she qualifies...she really needs this, it's vital.
I'm hoping for some news one way or another, I guess again they have to assess her and all that performance status malarkey, she has to get it, she has to.

Thankyou all so much for being so supportive. I'll update as soon as I know anything

[Lucy]

I just wanted to say something that's been bothering me, I don't know how many of you use the MPIP board also, but if you do, and have seen me posting there you will probably know I post as 'helen'.
just don't want to confuse anyone...I should have chosen the same name, really! Both names have significance for me. I am not very good at internet anonymity protocol but it is me, anyway.
Lucy x

[Lucy]

Okay, big comedown today.

I was so excited about the trial. Looked it up, I think it was the Astra Zeneca one from what I could gather.

But heard from Kate's family and they've spoken to the doctors, and been told basically that the trial is weeks away, she is unlikely to qualify due to being too poorly (again! just like with the Braf one) and that she can have the vaccine trial if she wants it, instead. But that isn't very hopeful, and she will still have to wait for it...she has no time!!!

She has been talking about going into the hospice, as she is in so much pain. It's awful...we are 8 months out from diagnosis, and it has come to this. She is having a syringe driver fitted to help with the stomach pain, so maybe that will ease things a little.

Feeling totally helpless. This is horrible.
I'm really sorry I haven't got better news to post.

Thanks again for just allowing me to post here.
Much love to you all and by God...keep fighting. One day we have to win this.

[ally]

Oh Lucy, I'm so sorry sweetheart. Hopefully the syringe-driver will, as you say, help ease her pain. Has she got a designated pain relief nurse (MacMillan or otherwise) to discuss her pain relief with? I would imagine she has. Maybe a Hospice is a good idea for her; they are fantastic places, purposely designed to help ease the suffering in so very many ways, I can't recommend their use enough. I really am at a loss of what to say to ease the hurt you are feeling at the moment, I cant find words to express how terribly sorry I am.
Much Love,
Alison. xxx

[Lucy]

Thankyou so much Alison. It means a lot, what you said.
I have had a look at the hospice on its website and it does look fantastic...I think if she feels like she wants to go, then she should...perhaps she is just ready iyswim.

Can't stop crying, but this is just part of it isn't it...it has to be done, can't escape that! I just wish, wish wish we could have longer.

lots of love, and thanks again xx

[Pip]

Hi Lucy
How sad I am today to be reading your posts. I am so sorry you are going through this.
A hospice is a wise choice as that is where pain relief is best monitored. Alot of people think that a hospice is the 'end' but that isnt necessarily so. With a syringe driver and support,,people do get to go home quite often. I have seen many patients go into a hospice to be given really good pain relief and able to go home. The syringe driver will be of great benefit to her and in between the dose if she has any extra pain then pain relief can be given as needed, Do bear in mind that the change over from oral or intramuscular morphine to subcutaneous (under the skin) can make her drowsy for a good 24hrs. This often happens as the morphine challenges the body to get the correct pain relief. Other drugs e.g for sickness can also be given via the S/D.The drugs she is on now are obviously not good enough. I have also seen people on syringe drivers for a long time.In the hospice there will be an abundance of different services to help including a good palliative care team to get things under control.They will help support you too.
I can sense that you are realistic about the future and I wish there was some way i could stop the tears. I cant, but everyone here is thinking of you and will help you with this journey as best we can.
Lots and lots of hugs, love and kisses
Pip xxxx

[Janet2]

Hi Lucy,

I am so sorry to hear that your friend is in so much pain and hope she can get some good pain relief soon. I'm sure the hospice should be able to help her with regard to this.

Also, I'm sorry to hear the news about the trials. I can only imagine what your friend must be going through as well as yourself.

Please let us know how your friend goes on, if you can.
Best wishes, Janet

[ruth]

Oh Lucy,
I'm so so sorry to read your update. Your friend is obviously suffering and I really hope she can be made more comfortable. I hope there is still a chance she can get on a trial, it sounds like between you and her Dad she has great help and support. I really feel for you hun its absolutely heartbreaking.

Love and hugs

Ruth x

[tracyb]

Lucy, i just wanted to send you a big cyper <<<HUG>>>. It so awful to see someone you love in so much pain, and it makes you feel so useless, but believe me your love and support is worth so much and she is lucky to have you as a friend. Love and best wishes to you. x

[Lucy]

You are all so lovely, and thankyou for the PMs too which I will answer.

It's felt like quite a desperate week but things continue, as they must, ups and downs every day.

Kate had a visit from the Dr at the hospice yesterday and decided she didn't want to go in - but the driver has been fitted and I guess she might be substantially helped by that, I hope so anyway. For now she is still at home and I know her family is taking such amazingly good care of her.

The options are there and I am sure she will do whatever she needs to do, when the time is right.
Thankyou again for being there, it has meant so much to me having your support.

Much love to you all

Lucy xx

[jen]

Hi Lucy, so sorry to hear about your friend, it must be hard for you too, you obviously put a lot of energy and thought into helping her as much as you can. Do you have someone to talk to about it all? My sister in law had a great Macmillan nurse, as well as supporting her as the patient , she was wonderful and offered support to close family and a friend too who were all finding things tough to deal with,
Take care.
jen x

[elliott868]

Dear Lucy
Everyone needs a friend like you! I really really hope that Kate finds a miracle to give her a bit more time with you and her family. Take care and keep brave, Sharon E xxx