Anyone with Lomustine experience?

Hi 

I don't have any experience with lomustine but noticed that your post hadn't had any replies yet. Replying to you will 'bump' it back to the top of the discussion list where it'll hopefully be seen by someone who does.

I've had a look on the Macmillan site and found this information about lomustine which includes a section on possible side effects. If you take a look it does mention that feeling tired is a common side effect. Have you mentioned this to your doctor's team as they be able to help your dad with this?

If you haven't already done this, if you type 'lomustine' into the group search bar at the top of the page you'll find quite a lot of previous posts which mention this drug. You could have a read through some of them and respond to any of the more recent ones if you think that the poster may be able to help you further.

While you're waiting for replies it would be great if you could pop something about your dad's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thank you for your reply. I will have a look at the links you have posted. 
many thanks. 
harlie. 

Hi Harls, 

I'm sorry to hear about your dad. 

My husband has just switched to lomustine on its own after his last scan showed that despite an increased dose of TMZ the tumour was still growing. 

He's just had 1 lot so far and like your dad it has knocked him out. The first week was awful and he managed a few hours awake to eat and drink but slept most of the day. He seemed to pick up slightly the last few days but today he has felt awful, been extremely tired again and getting headaches. It's really worrying whether he'll be able to tolerate this for 3 cycles. Hopefully it's worth it and it does some good. 

I hope your dad picks up and manages  his second cycle

LC x

Hi LC50. 

I am sorry to hear about your husband and I really hope the Lomustine helps slow the growth of his tumour. It’s good that he is managing to eat too. I have read up on lomustine and extreme fatigue seems to be 
a common side effect. My dad was suffering from headaches so I contacted his nurses and they upped his steroid which seemed to help. This also helped with the tiredness. He was picking up a little but suddenly went down hill over the weekend as he has picked up an infection. He was taken to hospital yesterday as he has terrible swelling around his eyes and has shingles. They have put him on an IV antibiotic. He was supposed to have his next round of lomustine yesterday which cannot be given. Weather or not he will have it at a later date I’m really not sure. I get married in July and am staying positive in the hope he will be there. 

We found with TMZ he would be tired but pick up gradually and make small improvements each week. With lomustine we he has had good and bad days with no pattern or consistency. But there have been good days and that’s what counts. 
I hope your husband responds to the lomustine and has good too. 

take care. 
Harlie. 

Hi Harlie,

Oh that's awful that your dad has an infection and shingles on top of everything else he has going on. Hopefully the antibiotics will make him feel better soon. 

This chemo does seem a lot tougher on them and I know one of the drawbacks is increased risk of infection.

I really do hope that your dad is well enough to be at your wedding next month,  I can imagine how important that is to you. 

Sending you love and best wishes 

Lisa x

Thank you Lisa. He is in the best place and I am hopeful the antibiotics will begin to have an impact soon. 

I hope you and your husband manage to enjoy this weather. Even to sit in the garden and just have that quality time will be so special. 

take care 

Harls 

Hi Harlie, 

How are you? 

I hope your dad is feeling better after his course of antibiotics. Was he able to take his next lot of lomustine? 

We have been able to sit outside and enjoy the nice weather which definitely helps my husband to feel a bit better.  

Take care x

Hi Lisa 

I am doing ok ish. My dad hasn’t been able to have another round of lomustine as it has had no effect. All treatment has now been withdrawn. He has been prescribed additional medication but he won’t take it. Yesterday he also refused his steroid and Kepra which he has taken up till now. I know when his father (my grandad) passed away from cancer he cared for him and seeing him deteriorate was traumatic for my dad. I know he doesn’t want that or me and I wonder if he thinks by not taking anything it will be quicker. He isn’t thinking rationally now due to the tumours. We will try again tomorrow. Every day is a new day and hopefully a better one. 

I'm pleased to hear your husband was able to get out into the garden. The sun itself is medication. How is your husband? Is he due to have another round of lomustine? I really do hope it is working for him. 

take care 

Harlie

Hi Harlie,  

I'm so sorry to hear that there is to be no more treatment for your dad. That must be so hard for you as well as your dad. Not taking his keppra and steroids isn't good though.  Hopefully like you said tomorrow is another day and he'll rethink. I'm not sure as I'm not a medic but I don't think taking those drugs will  prolong his life but will make the time he has better quality. 

Maybe it is the tumours that are affecting his thinking.  My husband seems to be getting more confused now which isn't good.  His next lot of lomustine is due to be taken in just over 2 weeks so we'll see how he is then.  Hopefully he'll be up to taking it. 

Is your wedding still planned for next month? I know lots of people have had to reschedule (yet again). Planning that and caring for your dad is a lot for you. 

Sending you love and best wishes

Lisa x

Yes, I am really hoping he will take his medication tomorrow. It won’t give him any longer but as you say it will improve his quality of life for the time he has left. I have told him he can’t give up that easily. One of the tumours is in the part of the brain which controls the ability to process and think rationally. He is still very much aware of what is going on but there must be a lot going on inside his mind. I have until Monday to make a decision on what to do about the wedding. All is planned and ready to go ahead but now I’m so confused on what to do. We rushed to get everything done do my dad could be there and now, without him taking the medication I don’t know how he will be. If I cancel both he and I will then know that he will never see me get married. I know this means as much to him as it does to me. Without taking his medication I can’t see him being well enough to be there. 

two weeks… that’s not long. I hope everything is ok with his bloods and he is able to tolerate another round so you can have more time. They may be able to give him something for the confusion too if it does get progressively worse. They have for dad bit as I said he’s not taking it. But it’s good to know there is something to help this. 

harlie.