My husband is starting taking Lenvatinib today, in the hope of halting/shrinking primary liver cancer. We're just so nervous about side-effects of the drug, as we had an hour long talk at the hospital yesterday about possible side-effects and they sound so scary! Is anyone else in the group taking it? It would be good to hear of real-life experiences. The emphasis on side-effects tends to mask the fact that it is actually supposed to help, and make him feel better. If there is anyone who has taken it and has felt better, it would be good to hear.
My Mum took it for about 2 months. Side effects for her were very minimal, she got sunburned very easily and always woke with a headache at the same time at night (which went away with paracetamol). She felt really good on it. In her case the cancer became resistant to it after only 6 weeks but I think that’s below average.
Hope this helps,
Thanks - it's really good to hear that side-effects can be minimal. At the moment, I'm sort of nervously looking at my husband all the time to check if he is all right. I suppose I'm treating him like an unexploded bomb! Which I know is ridiculous - I hope I'll get a bit more used to all of this, and to living with the uncertainties.
Anyway, today is day 2 on Lenvatinib. I'm sorry your Mum got resistant to it so quickly, and I hope they managed to find her an alternative. Thanks for taking the trouble to write, Rachel.
Glad it was helpful! How's it all going?
I think it's going well, on the whole - very few physical side-effects so far, except slight diarrhoea. The main thing is almost total lack of energy - he's really slowed down almost to a standstill. But he was already very exhausted before he started the Lenvatinib, so it's hard to tell what is the drug and what is the illness itself. Mentally he's doing fine - remarkably positive and cheerful, I'm pleased to say. There's probably an element of denial there, but if it helps him, then good!
How's your Mum getting on?
That's good, I'm glad he's feeling positive and the side effects are manageable. It's probably quite a boost that he's now being treated, or at least Mum felt like that.The lack of energy is something Mum had too, both before and after Lenvatinib was started. She found going for very short walks helped a bit to get her circulation going and give her more energy throughout the day.
Mum is not in great shape I'm afraid - she was supposed to start Folfox chemo after Lenvatinib stopped working but got an infection 4 days before it started and ended up in hospital. Various other things went wrong and she got a terminal diagnosis about a month ago, at the moment we're looking after her at home until she dies. She is comfortable though and has had some happy days with friends and family.
Best of luck with it all,
Oh Rachel, I'm sorry to hear about your Mum. It's such a sad situation, though I'm pleased to hear she is comfortable and able to enjoy happy days. I wish her as many of them as possible.
I'm starting to come to terms with the fact that my husband will not now live all that long either. We didn't discuss prognosis at his last hospital visit, and I'm not sure he will ever want to discuss it, but I'm trying to get mentally prepared, as I believe that statistically his life expectancy is around 8 to 11 months. It's not long - so we will try to pack in as many happy days as possible, too. He remains positive partly because I think he believes Lenvatinib will give him a couple of years more life, but sadly I don't think that's true.
I do appreciate your messages - this one gave me comfort that at least he may be free of pain. I wish I could say something helpful back to you, but there is nothing except the very best of wishes and hopes for your Mum, you and your family.
I'm glad you find my posts helpful :-) How are things going now? Is your husband able to get out and about or is he too tired for that?
My Mum also didn't want to know anything about a prognosis and was hopeful because she knew Lenvatinib was a new drug, but Dad and me had looked up all the medical info and also thought she'd probably get around 8-11 months from it. Some people do get a lot longer from it and I guess Mum was someone who got a lot shorter.
Mum died in the night a couple of days ago. We were with her constantly and I think she might have sensed we'd all gone to sleep before she 'decided' to go. We were all in the living room on various campbeds, sofa, camping mattress, etc and I went up at 2.30am because my camping mattress was so uncomfy! She was still breathing when I left but my sister woke at 3.15am and realised she'd quietly just stopped breathing so came up to tell me. The hospice nurse who gave us weekly visits at home said she might be noisy or agitated at the point of death but once they'd calibrated the meds in her syringe driver she just lay there are breathed softly with her eyes shut for a day and a half before she died, it was very peaceful. We were a bit afraid of having to ask for a syringe driver after she found swallowing too hard but it was actually pretty tame, just a hand-sized box attached to a canula thing popped into her upper arm. I'd really recommend death at home or in a nice hospice if that's possible for you - we found we needed 2-3 of us to care for Mum well at home and not all go crazy so you might want to discuss that possibility with family if there are others who could help at that stage. We also found the Red Cross will lend wheelchairs for free which helped a lot, and you get NHS carers dropping in 4 times a day for free. The NHS give you the bed and commode, etc and daily visits from district nurses so you are well monitored. Let me know if you want any more details about all this - I can see that you might not want to think about it just yet!
All the best,
Many condolences on the death of your Mum. And many thanks for sharing your experience at what must be such a busy time for you. The sort of practical details you include, and the sense of what it was like, are exactly the things I worry about at 4a.m., so it really is helpful. I think, like you, I will try to look after my husband at home as long as possible. If it gets too difficult, we may have to think about a hospice.
But actually, the main thing I want to say now is - what a fantastic family you are! You seem to have done everything your Mum could possibly have wished to create a peaceful death for her. I know it can't have been easy (and I smiled at your 'not going crazy' comment - too true!) But speaking as the mother of three adult daughters myself, I think she must have been so grateful to be surrounded by all your support and love. It's interesting what you say about 'deciding' to slip away - both my own parents (in different circumstances) did exactly that, even though we were all around.
I know my husband will be well-supported by our family as things progress, though at the moment he and I can get by ok. He is able to get up and dressed and wash himself etc. It's just that he can't do too much more than that. I'm a bit worried about getting him into the hospital for appointments, as he is so slow, and we have to take two trains into London to get there. At the moment we can do it, though.
And I shouldn't sound too negative, because we are planning to go on holiday to Crete at the end of this month! It was booked before his diagnosis, and he so much wants to go. My youngest daughter (28) will travel with us both ways, and the others will join us for some of the time, so we'll have help. I plan to ask the consultant at the hospital tomorrow whether it is ok for us to do this. I hope we get the go-ahead, as it's really good for him to have something to look forward to.
You'll see that he is at an earlier stage of this journey than your Mum was. I hope you are all coping ok with her death and are not too sad. She must have been a great person, to have created such a close family. I'm sure you're busy with funeral arrangements now, and I hope it all goes off as well as you could possibly want.
All sympathy, and all best wishes,
Arcenciel (which feels strange to write, as obviously it's not my real name hahaha - it says it on a poster in the room where I write, and my eye fell on it when I was looking for a name, but I'm not French, or an elf, and certainly not a rainbow!)
I just wondered how everything was going? Did you manage to go away?
Mum's funeral went really well, I'm properly back to work now which is very strange after such a long time away!
I have been on lenvatinib for four months. The main side effects with me are, short of breath at times, sometimes a dry skin rash and really bad fatigue. I never get all the side effects at once, seem to go in a cycle. Good news is, it has got rid of 2 tumours and shrunk the other one. Hopefully it will carry on working.
That's great to hear Roy! Hang in there...
Good to hear you're back at work - it must be nice, really, even though strange. We're doing ok, I think. The side-effects of Lenvatinib were not at all as scary as I expected. The main one is still the immense fatigue, but my husband is getting better at pushing himself just a little bit. At first he essentially stopped doing everything - hardly walking across the room to put a cup down - and I just did everything for him. It has been hard to know how much to support and how much to nag! But it has now improved a bit, and he does more, though he is more or less housebound. He is 72, though, which I know is older than some of the people who may be reading this. I'm 65 - and I'm having to be a lot more active in retirement (end of last year) than I planned! I'm having refresher driving lessons, as he did all the driving, but I'm not sure that's very safe any more. Lazily, I'd let him take over, though I do have a licence so I hope I'll get back up to speed.
We went to the hospital last week and the tumour seems to be stable - no growth. So the Lenvatinib does seem to be working. The cancer marker in his blood has gone down a lot, too. Fingers crossed that it keeps working. I know it usually stops after a while. He only takes 8mg not 12, as they thought the full dose would make the fatigue too bad.
We went to Crete - and I'm so glad we made the effort! So is he. I got a wheelchair for him, and assisted boarding at Heathrow was fantastic - so smooth, and everyone helpful. I loved that we went to the 'wrong' side of the plane on a hoist thing for his chair, then the operator knocked on the door to be let in! It was equally easy at Chania when we got off.
My husband really screwed up all his efforts to make the journey, and didn't really enjoy the plane - he seems to have lost his ability to nap on planes. So when we got there he was very tired for the first few days. And he didn't get out and about much at all, but the villa was nice, with lovely views, and our two year old granddaughter came for a week which kept him amused - also we (me and my two other daughters) could wheel him to local tavernas in the evening. Sadly, he no longer likes eating and drinking like he once did, and gets tired sitting at a table after an hour or so - but we adjusted our routines, and he really did have a good time.
I'm writing all this in case anyone reading is as worried and hesitant as I was (or we were) about a holiday abroad. In general and if possible, I would say 'go for it.' It's good to have something to look forward to, and to talk about when you get back. Oh and I should add, I know people struggle with insurance. We had put ours in place before his diagnosis, so the insurers said ok we'll cover you this time, but in future we'd have to take his condition into account. So we didn't have problems, but I guess we might in future, if in fact we try to do something similar again. We'll see.
So that's my progress report, Rachel, and thank you for asking. Obviously the situation is not brilliant - I do worry, as I think everyone does, about him maintaining a quality of 'life worth living,' and I can see it could become a delicate balance. But for now it is certainly worth living, and he enjoys people and company even though he can't do much. So it really could be a lot worse. And from my personal point of view, as semi-'carer', all I can say is, it's amazing what you get used to! I still have very low moments - doesn't everyone? - but I think I'm more philosophical and fatalistic than I was. I'm also getting a bit better at maintaining my own life, and getting out myself from time to time, which certainly helps my mood and energy levels. So fingers crossed that that will remain possible for a while yet, too.
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