Hi ELF1984,

I'm sorry to read about what your mum, and you, are going through - this sounds like a difficult situation. It's hard for me to really advise on this; I would suggest you give our nurses a call if you would like to talk things through as they may be better placed to offer some suggestions. If you'd like to do this, you can reach them on 0808 800 4040 - Monday-Friday, 9-5.

I hope you're able to find out more soon and that things ease a little.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thank you the nurse is coming round today so will ask

Hi my husband(who is 66) has advanced kidney cancer (May 2019) had the kidney removed June2019 open surgery, been on other immunotherapy until November 2019, started on Pazopanib 200mg 4 once a day since Feb 2020 and is doing a lot better, the first few weeks he was feeling weak and no strength couldnt dress himself walk unaided, one morning he couldnt sit up in bed, turns out his thyroid was very low, since starting on the thyroid tablets he has a lot more energy, he also had oral thrush that made food drinks taste terrible, is on nystan suspension, he did go through a stage back in November when I couldnt get him to ea or drinkt, got the drinks fortisips(even tried them frozen) he wouldnt have them, got him to drink lemonade (not diet) eat ice cream small bowl or custard (tin) and pear halves(tin) he was eating 5 to 6 bowls a day.

Constipation has been a problem he takes lactulose twice a day, stewed apples (or prunes) and custard anything that he is will to take, when he feels sick I give him the anti sickness tablet.

We have microlax enemeas that he manages to do himself, or you could ask the district nurse to call who would do it for you,over the past year I have had days when I think the cancer is winning but usually its something like a low thyroid,high potassium or low blood pressure, Pazopanib has had very good results,so fingers crossed it can slow the cancer down and a better quality of life, dont be afraid to contact the chemo team if you are worried about anything they have been a God send to me/us, take care

Hi, thank you for your message. My mum has started vomiting again but this time there are blood clots. She's not taking her calshakes as she said she is not hungry, but is able to eat a small bowl of jelly and ice cream.

She doesn't want us to call the nurse or hospital but I am really scared and concerned. From your message though I am hoping my mums weakness feeling etc will pass over time, although she is taking two Pazopanib tablets daily.

I spoke to a pharmacist who said to try liquid senakot but my mum is refusing to take it (she said she can't take anymore medication). I will stewed apples or prunes.

Thank you flr your advice

I found the time when my hubby wouldnt eat very difficult, but keep trying and I know its hard going against your Mums wishes some times you have no choice talk to her chemo team (especially if she is bringing clots up), who will give you advice to stop her getting dehydrated, and may give her a blood test(anemia/thyroid ect) the jelly and ice cream is good idea anything she will eat and just slip down small amounts but often is what i tried.

I had to go against my hubby as I could see him fading away, please phone the chemo team and/or the palllative care team, they have been so good to us, they help the patient and family live with cancer and get a better quality of life.

Take care

Thank you, your messages have been really helpful. We have a hospital tomorrow so I will speak to the doctor and team (my mum is the same doesn't want me to tell or ask the doctor anything but I will). It's crazy how  much she has deteriorated in such a short space of time- the doctorshave said they cannot remove the kidney and the cancer has spread to her lungs. She also has clots surroundingthe kidney and on blood thinners. She has blisters in her mouth and dry mouth as well. I was able to get her some gel from the pharmacist to help with the dry mouth and some corsodyl mouthwash to stop infections. I've managed to persuade her to at least drink the shake (calshake) the hospital gave her and pureed some potatoes and green vegetables for her. The problem is whenever she gets up to go to the bathroom she is feeling sick and bringing up bile and blood. I am hoping tomorrow the hospital conduct blood tests and possibly out her back on steriods and this helped for the first few days with the sickness.

It's breaking my heart to see her weak and hurt so much when she said she didn't want to eb remembered this way. I have my fingers crossed for tomorrows appointment.

Emma

Hi been thinking about you,hope the the appointment was useful, my hubby is on blood thinners (innohep injection) I have to give him once a day in his stomach(never thought that I would be able to) he also suffered from blisters in the mouth, then had thrush in the mouth once this cleared (iglu gel not cheap but did the job and then Daktarin oral gel or Nystan suspension via perscription remember to take the false teeth out and put them in the suspention)

My hubby took Metoclopramide 10mg tablets about an hour before food this helped him over ths sickness, and now only uses it very rarely, when he couldnt eat ginger biscuits dunked in tea sometimes helped.

It was a 1 year today that we started on this cancer journey, went to see consultant no idea what was coming as our GP had said that there was no cancer in the testicles but a slight problem in the kidney!! consultant  told us he had cancer in the kidney 12cm tumour plus spots on both his lungs. He had the kidney out in June 2019 open surgery, the also found cancer in the soft tissue where the kidney had been sitting they failed to remove that,he is on pallative immunotherapy is the only treatment that can slow the spread of the cancer and give a good quality of life,  

In November he was at his worse, in and out of hospital every 2-3 weeks not eating sickness ect he was put on steroids and he did feel better, he then came off them, since February and taking Pazopanib and the tablets for his thyroid he has improved so much he can walk unaided,dress himself ect.

I hope your Mum will start to improve and please remember you are doing a great job be kind to yourself

Take care 

Hi

They've stopped my mums chemo tablets as her side effects are too severe, doctor said to have a break for 4-5days and have also started her on Metoclopramide and I asked if she could be placed on steriods again as this helped with the sickness when she was in hospital. Once the blisters in her mouth have eased and she's able to eat she should get her strength back. I was abit apprehensive about stopping the chemo as this is the only thing my mum is taking to stop the cancer spreading. We also have a really jice district nurse come over yesterday who has put in a request for my mum to have an assessment for a hospital bed, pressure mattress and a walking aid.

It aas heartbreaking yesterday as they wouldn't let my dad and I attend the meeting so I just went in, the doctor was shocked with how much my mum had deteriorated. I asked if it could be her thyroid so they did blood tests yesterday. When she restarts the Pazopanib again she will be on half the dose.

Hearing about your husband's journey is really encouraging and I am glad his quality of life has improved and have hope my mums will.

Thank you for your advice and listening xx

hi, my hubby was in a similar place to where your Mum is now back November/December 2019 He couldnt manage anything couldnt eat,walk,dress himself and to be honest he was giving up, they stopped his treatment and put him on steriods like you I was so worried that the cancer would continue to spread, but the steriods did the job and he started eating ok only small amounts to start with every 2-3 hours, by February he was a lot stronger to cope with treatment and has gone from strength to strength

I sure your Mum's appetite will  improve now that she is on the steroids.

Take care of yourself and your Dad

Hi

Was your husband still vomiting after stopping Pazopanib? My dad is struggling talking to anyone so I am liaising with out palliative support worker and we've arranged for mum to have a hospital bed and pressure mattress as she's unable to do the stairs in my mum and dads house. She caught me off guard yesterday afternoon when she asked me if mun would like to die at home or in a hospice and does she want CPR performed if needed. It's all happening very quickly and a lot to take in.

We've gone from suspected kidney infection to stage 4 cancer of the kidney and liver to now discussing her death plan within less the 2 months. They gave my mum 6 months max to live and now with all these questions I am fearful it will happen sooner.

This chat is the only thing helping me, so thank you.

My names Emma by the way xx