A place for people affected by brain tumours or brain cancer to support one another...
After debulking , radiation and chemo, the glioblastoma had almost disappeared by August 2017. Each MRI had good news. Until two weeks ago when results showed the tumor has gone from a sliver to 2.0 cm in four months. The oncologist has put me on a daily chemo pill of 115 mg.
Has anyone else taken that route or know of someone?
my my husband John was diagnosed April 2017 tumour the size of a cherry tomato in right frontal lobe and had 99% removed and radiation and chemo followed. 18 months followed and John returned to work and was enjoying a new “normal” as we put it. 3 monthly Scans were good/stable and after each scan we were able to look forward for another 3 months knowing the tumour was stable. October 2018 we had another stable scan so we were able to focus on our 2nd Christmas together with our family since diagnosis until the first week into December John started to experience new headaches that became more persistant iver 3 days. Our gp sent us for a scan to rule out anything sinister as we were only 6 weeks from a “good” scan. We were devastated to hear that the tumour had grown in the right temple. 1 week on and a total resection was performed. We were thrilled to have John home 4days before Christmas. This was so much harder than the first time. John started more temozolomide in late January and had a post op scan too this showed that the tumour was already growing. John continued to have 4 cycles of chemo and a higher dose but on Sunday another scan showed further growth so the chemo has stopped and they will change Johns treatment to PCV which is the intravenous more invasive chemo. I believe this to be the last option that the NHS will offer but we are going to see a specialist at Charing Cross London on Thursday and hopeful we are offered something positive.
I would love love to hear of anyone whose experienced a reacursnce and share your story.
so sorry to hear this. I’ve been watching your comments on here since Anthony’s diagnosis in October 2017. I haven’t heard of this pill you mention - what is it called? Anthony has just completed his 6th round of PCV, which has been gruelling, especially this last one.
Hi Cooey 65
my husband was diagnosed October 17. He doesn’t ask questions, and doesn’t like me asking, so the early days are a bit sketchy. He had the debulking, which the consultant said was successful, then were passed over to the oncologist. Didn’t know what to expect, so the news was devastating at the time. He had radiotherapy and TMZ for 6 weeks, break for 4, then started TMZ again. He seemed to cope quite well - no sickness. Then after the 5th round he showed signs of return - stumbling, forgetting words etc. (Tumour was in his left temporal lobe). A scan revealed it was spreading to the right. He was then started on PCV. This was more gruelling.
A scan in January showed the tumour had shrunk (don’t know how big it was, as he won’t ask). We took this as good news. He has just completed the 6th cycle, but the oncologist mentioned carrying it on! The last 2 cycles have really taken their toll.
he has a scan next week, and we find out results on 17th April when we next see the oncologist. I don’t want him to continue - it’s so gruelling - but it’s his choice.
I hope you get better news on Thursday. To be honest, I haven’t heard of any other treatment. This tumour is so unpredictable and vicious.
take care, Sheila x
I have had this awful thing since my first seizure a week my Dad had died, too good.
That was 2 years a go and have had 23 cycles since then. My Oncologist puts me on the awful chemo but still alive and do in a furniture repairing shop.
Sorry if my words a not that good, it is not alcohol either, just a demon living in my brain.,
The pill is temozolomide. During the first round of treatments I was on 350mg for five days out of 28. Did quite well with it. Did not lose hair or be nauseous, although I also took an anti-nausea pill.
Now I'm in 115 mg each day. Am not sure how long that will continue, as it depends on monthly blood tests.
We had a consult with the surgeon who did the original crainiotomy. He is willing to do another debulking, but warns that second surgeries have a higher risk because the immune systym has been compromised. I have decided against surgery at this time. But am agonizing if it's the right thing. I know I have the RIGHT to decide, but should I fight to the end ? My husband and I are married almost 56 years and have a good marriage. Is it fair not to fight for every extra bit of time ??? I'm so confused.
You were right with any other options, Charing Cross have suggested the PCV but they said we can try the oral not the kntravenous as it’s not as gruelling? On that note would you mind me asking your husbands she and how he handled the PCV?
It’s s long d battle with this disease but we’re not ready to quit just yet xx
Sorry taremay, I misunderstood your post. I thought you were on something other than chemo tablets. I keep wondering about immunotherapy - nobody seems to have that for this particular tumour.
i remember you said family encouraged you to fight the first time round, and you were glad they did. Nobody knows how you feel, other than you. I’m learning that every day is basically different for Anthony. I can sympathise and maybe make him feel better, but I don’t really know how he feels. Plus he doesn’t really say, but he’s getting better with that - even read a few Macmillan booklets later on fatigue and how to manage it.
i know a couple of other people who attended a support group we attended a few times - they had taken temozolomide for 12 months. Six months after finishing it they are still here, both finding mobility a bit restrained (they use a walking stick), but on the whole look really well.
I hope you find peace with your decision soon. Yes, it’s your right.
take care, sending hugs, Sheila xx
anthony has had the full PCV regime. He has had abdominal pain on each cycle, and the pain became more intense as it accumulated, which is why I’m hoping this is the last, which is the norm I think. Nobody seems to have more than 6.
i understand the abdominal pain is mainly caused by the vincristine, which is given intravenously on the first day, so the other pills are perhaps not as bad with this particular side effect. His platelet count has been low also, causing a few breaks along the way.
No, we are not ready to give up just yet. It’s a terrible cancer. So much it affects
take care, Sheila xx
Hi Sheila ...It took me a couple of days combined with a family chat to feel comfortable with my decision. I'm going to continue with the daily chemo until the next MRI and see if it is keeping the tumor under control. If not, then I MIGHT consider surgery. But we know it can only be partially removed, so we'd be facing the same decision again. .My instinct ar the moment is to live a quality life while I can and accept what comes. (we have a dream trip booked the end of April) But nothing is written in stone so we'll see.............. It was encouraging to hear that some have taken long term chemo and are still functioning. ............Hopefully your Anthony can find helpful treatment. (it can be difficult to express how one feels emotionally. ..the physical things like fatique are easy to express..but emotions are different)........ Regards, taremay.♡♡♡♡♡♡♡♡♡
hope you are still going on your dream trip soon?
we had good news today - for once!
the scan was “good”, so no more chemo and for now just 3 monthly scans and review. We felt like we had won the lottery this morning.
Our consultant said he can even get on a plane ......encouraged it in fact....but take some steroid on the day of the flight. I’m not going to read into that too much. It’s the first time we have had encouraging news, and the last 18 months of treatment were not “in vain”.
Anthony was stunned for a while. So humbling to see. Our whole outlook seems better somehow. His diagnosis hasn’t changed, but we are now encouraged to make the most of it now.....instead of working around chemo cycles.
my husband and I have been together over 35 years.......he has astounded me with his courage and bravery since diagnosis in October 2017. So bleak back in those early days, but I would never have said I’d feel so positive as I do today about a longer future together.
this disease is so draining - for all affected by it. So unpredictable, but there is support out there. Find it and use it.
hope this is encouraging news for everyone.
I am SO VERY PLEASED at your good news. Only one who has experienced this can know the feeling ♡ It's so opposite of that beaten feeling one has when diagnosed.
We are still taking that dream trip. Coming up in less than two weeks and everything still seems to be a go.We are doing it as an early celebration of our 56th anniversary. (our anniversary is not until August, but we are not sure if travel will be doable then for me.)
This is a good chance for you and Anthony to do some things you like. Sending you both my VERY BEST WISHES ♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡
Sounds great news. Keep working with the pills. I started in May 2017 and now with 24 cycles. Just Enjoying yourself with your partner .
May I ask what pill / dosage you are taking? And what side effects you are having ?
I am taking 115 mg of temezolamide each day. Over a month this is almost double the amount I was getting in a 5/28 day cycle during my first treatments. I'm wondering how long that can continue without the body getting a recovery period. It's only my second month and I'm wondering how long others have had similar treatments.
I've been wondering how John has been doing since his reoccurance last autumn. You may have already posted something and I've missed it. (I find the format on this website a bit awkward. .........but then I'm not a techie either ! ...lol )
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