Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

One door closes...

daloni
Posted by

you’re a twit. That’s an insult reserved for friends

xxx

tvman
Posted by

I thought that may have been the case, sigh !

xx

My philosophy is simple, love life and family.
Maybug
Posted by

Oh  I’m so sorry to hear this. You put yourself through so much to be on the trial and to find out it hasn’t worked is beyond disappointing. I’m pleased there something else for you but I hope you can have a rest with your three gorgeous girls before you get back on the treadmill. Much love. J 

ruthjp
Posted by

Hi,

thanks for the reply and for looking up lenvatinib.

i was interested to hear it could be used with prembrolizumab as this is also used for adenccystic carcinoma which I have but works better if you have PDL1 which I don’t have.

there is the abscopal effect which means taking 2;things together the treatment works better.

i will ask my oncologist when I see him.

i am still unsure if I can cope with the side effects of lenvatinib.

i hope your new trial helps you.  these drugs all have unpleasant side effects and then it is disappointing if they are shown not to work. It does however give us hope for the future.

love Ruth xx

Ruth age 67

 acc R submandibular gland wth lung mets liver met and brain mets 

Lynn2
Posted by

Daloni, sorry to hear the trial didn't work for you but glad they have another one lined up for you.I know that sinking feeling when they say things have grown, its awful isnt it . I start 4 weeks radiotherapy tomorrow and if that doesnt work i may go on a trial at the Christie of a watered down version of Docetaxel. All the best Lynn 2

Lynn 2. xx

daloni
Posted by

Well today was a funny old day. I had blood samples taken, urine and an ecg then met the consultant in charge of the patriot trial. He wants to review my scans and check out whether this trial is really the best option for me and check whether it’s safe to take the biopsy the trial requires. There’s an MDT tomorrow. My oncologist - the senior registrar who’s taken charge of my care for the last few months - is still convinced we will go ahead, likely in the next fortnight. 

I feel rather thrown by it. I put my energy yesterday into looking forward with a firm plan in mind. Now it feels less secure. 

I think I’ll just go with the flow. There’s not much else I can do really. I feel exhausted so a rest would be good. 

I hope you’re all surviving the winds. It’s been blowing a gale down here and I doubt we have the worst of it 

xx

tvman
Posted by

Aw

You're being shoved from pillar to post and all that is sapping the nervous energy out of you. No wonder you're tired, I'd say a good rest is called for, there's nothing more you can do. Sit back and kick off your shoes. 

Yeah, the weather was foul today, I wouldn't recommend walking around in pyjamas in it lol. 

I'm sending you a big hug because you need a big Tvman hug. 

Goodnight, and sleep tight.

Tvman xx

My philosophy is simple, love life and family.
tvman
Posted by

Hi

I wish you the best of luck for the next four weeks, Lynn, I'll have my fingers crossed for you for 4 weeks.

Tvman xx

My philosophy is simple, love life and family.
Gragon
Posted by

Hi ,

I think that we all crave certainty and struggle when we don't really have a clear direction of where we are heading.  A good rest seems like a lovely idea, especially when the weather is so inclement.  It was really windy up here yesterday but this morning looks surprisingly good.  It is supposed to be dry with some sunshine but apparently once I venture through my door it will be very cold.

I know that you have confidence in your team so hopefully they will soon have you moving forward with a plan again.  Until then enjoy the break.

love and hugs,

Gragon xx

Roobarb
Posted by

before I got on my immunotherapy trial it was a bit hot and cold like that, sending me into the gloom’s......with hindsight, they were havering because of it being tricky to get a biopsy and they couldn’t go ahead without one.  The consultant said we will never put you at risk just to get you on a trial, so you might find it is that.  They wouldn’t go near my liver for example, which was where my biggest tumour was.

fingers crossed it’s that and they will have a better idea when they have had a good look at the scans (and mine needed a second opinion before they went ahead) xxxxx

Elliekate
Posted by

Hi Daloni

Wishing you well and hoping things go forward for you xx

daloni
Posted by

Thanks for the boost. You’re right , there is always a certain amount of arsing about with trials and safety has to be the top priority. I’m actually quite good at living with uncertainty as a rule. It was just that I’d used the device of looking forward to something hopeful rather than backwards at something I can’t change as a device for not getting bogged down by the crappy scan results. 

I have had a lovely morning that’s brought in a dog walk, a nap and some crochet followed by a cheese toasty and equilibrium has been restored 

xx

Kym66
Posted by

Oh Daloni 

I'm so sorry to read you had to come off the treatment 

Your team sounds like they r on the ball 

I wish u all the best on the new trail treatment I will b praying 4 u this one is ok 

Lots of love 

Kym xx

Kym xx 

MCLkid
Posted by

Dear daloni,

I’m thinking of you during all the changes. Again who knows -give a run if you are up to it. You never know. We are not in control all by ourselves - and it seems you have had good luck in extending your time from on High. 

I really like the name cheesy toasty. Sounds great. Wish I could come  over and taste one with you.

I think I owe you a virtual tour of Kauai to warm you up. I’ll start working on it when I return.

In the meantime  try to disconnect from it try to Enjoy the day while waiting

I just found Justice Ruth Bader Ginsberg’s exercise book routine all in house with bands she has beat serious cancers 3 times by keeping strong Focuses the mind I’m going to start her PT routine tomorrow- supposed to increase muscle and strength and posture. So I’m going to try it. 

Anyway do what ever is good for you and yours. Please don’t let the medical procedures run you down. Wish I could help in some way. 

Rest, love, music and dream. 

Hugs to you and yours. 

Millie

MCLkid
Educating myself about this disease.
daloni
Posted by

Thank you, Millie . You are quite right that exercise really does help, especially if it’s outdoors. The dog is getting me out and about and it’s been so therapeutic. I can let her off the leash now so she can run round while I stagger along slowly with my walking stick. 

I shall think of you while eating cheese today. I have two dear friends here this weekend so it’s all go. We have just booked tickets for the Pre Rephaelite Sisters exhibition at the National Portrait Gallery in London. It’s a beautiful gallery, right on Trafalgar Square, and I love the Pre Raphaelites. My mother was fond of telling me I looked like Elizabeth Siddal. 

You have a great day 

xxx