Limoustine

Hi

my husband had lomustine as part of a chemo regimen called PCV - 3 different drugs the third of which was given intravenously. This regime was given after 5 cycles of TMZ resulted in regrowth of his GMB. I don’t know about lomustine on it’s own, but the 3 drugs were quite gruelling. We were told the vincristine had the worst side effects - he suffered terrible stomach pains. He finished the full 6 cycles in April this year and has just had his third MRI scan showing no regrowth!! He was diagnosed October 2017.

Hi Realist,

My Mum had Lomustine as her second type of chemo treatment as she didn't tolerate TMZ very well. The Lomustine didn't seem just as harsh as TMZ however her platelets did end up dropping again on her second course so they had to abandon it. It is a gruelling treatment, but worth trying as everyone responds to each type of treatment differently. My Mum was initially diagnosed in March 2014, and had the Lomustine the following year after they had found a second growth. The Lomustine managed to stop all re-growth and was successful until just a few weeks ago, when we were told that a new tumour had grown in a new location in the brain, and that this one could not be treated (successfully).

So to answer your question - Lomustine bought my mum almost 4 extra years.

Worth a try, I'd say.

Keep positive. Good luck to each of you.

ShM

My mother had lomustine for her second round but was only able to get through two rounds before they stopped it. She tolerated it fine but her platelet counts couldn't be substained on it. 

Hi my mum was diagnosed June 2019 and after only 6 sessions of radiotherapy and 4 TMZ cycles it has re occurred been to the doctors today and he has prescribed lomoustine so would be nice to keep in touch thanks x

Hi Sheila,

Come across your post on PCV and was hoping you could let us know what might be ahead, or at least how your husband coped. Graham is due to start first of 6 cycles nt wk, have appointment tomorrow at hospital to sign consent forms etc. 

Hope you're both well and staying safe

Love Lisa x

Hi Lisa

anthony finished PCV in April last year - he found it quite gruelling to be honest. Before that he’d had 5 cycles of TMZ (after a craniotomy and 6 weeks radiotherapyband TMZ) when regrowth showed up on his scan in June 2018. Our CSN said PCV was the gold standard of treatment. We followed the dos and donts  with diet to the letter. He did have lots of stomach pains and constipation, but managed the 6 cycles, with a few knock backs with low blood count delaying some cycles. 

I’m pleased to say the chemo was worth it......he’s just had his 4th clear scan!! Still under 3 monthly scans, but otherwise just on anti seizure medication.

its a cruel tumour - no Anthony isn’t the man i married, but since diagnosis I have concentrated on arranging trips away when possible and family get togethers - making memories. Missing those at the moment. 

take care Lisa.....hope all goes well tomorrow. I’m guessing you can’t go in with him due to coved, and he will be having his first intravenous chemo. That takes about half an hour, so about an hour at least in total. Anthony took his iPod and listened to music. 
Let me know if you have any other questions.

love Sheila xx

Hi Sheila,

Thank you for this. Graham's TMZ was cut short because of covid so had MRI earlier than expected. Has 2mm growth. He's really well, still cycling on bike in garage, walking and keeping up general fitness. Memory biggest issue and Graham not the same person because of this but he's my best friend, been married nearly 33 yes (Graham's 55). We believe treatment will start nt wk, tomorrow blood tests and consent forms and general chat. I think the sooner you can accept that some elements of your old life have gone and focus on your new life the easier and happier you can be (not always easy I know). 

So grateful for you messaging. So pleased Anthony has been having clear scans, that's amazing. 

Take care, 

Love Lisa x

Morning Sheila,

Sorry another question. I know everyone is different and I'm assuming PCV has a cumulative effect, but how long did it take Anthony to feel more like himself once each cycle had finished. I know when Graham was on TMZ he was fine week of treatment and more tired following 7-10 days. Since diagnosis Graham has needed a nap in the afternoon, usually straight after lunch but no more than an hour.

Thank you,

Love Lisa x

To be honest lisa I’m not sure Anthony does feel more like himself even today. He still naps every day after lunch -  at least an hour and a half, usually 2 hours. Yes the PCV did have a cumulative affect, and his blood count did drop a lot, delaying the following dose. In fact the last dose he really didn’t want to finish the tablets, which last for 10 days each time. Our csn is really good. She encouraged him to finish the last batch, insistent that the vincristine was causing his stomach pains ( the intravenous part at the start of each cycle). 
the tiredness has never left him - apparently it is a long term effect of chemo and radiation. 

whereabouts are you? We are in Manchester and go to the Christie hospital. 

sheila xx

Anthony has also taken CBD oil in capsule form for the last 2 years. Our son persuaded us to start him on it. Nobody professional will recommend taking it as there is no scientific evidence it helps, but I feel it has. 

sheila xx