Concerned About Treatment for Grade 3 Brain Tumour

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I had a siezure back on the 4th June 2021, and I was diagnosed with a grade 3 Oligodendroglioma. I then had surgery at Kings on the 21st July 2021. 70% of the tumour was removed and I was sent home to recover. I then had six weeks of radiotherapy and then had a break over Christmas 2021, with the plan of starting Chemotherapy in the new year.

I had one cycle of chemo in January 2022 before I had to stop, due to my ALT levels being too high. I then had an ultrasound which revealed I had, Non alcoholic fatty liver disease. I also had psoriasis previously, which since my diagnosis, has developed into psoriatic arthritis. 

So, from the end of January 2022 to December 2022 I've received no cancer treatment whatsoever. And for that whole year they couldn't work out why my ALT levels were so high.

So, as I now have epilepsy as a result of the tumour, they weaned me off some my epilepsy meds (Epilim 250mg), then they took me off the steroids (Dexamethosone 1.5mg) but my bloods kept coming back the same, elevated ALT. They then lowered my other epilepsy meds (Keppra 1000mg down to 750, then 500) to see if that would make a difference. Then due to negative side effects (aggression, memory loss, depression, etc) from the Keppra, they put me on Brivaracetam (still have some side effects, but nowhere near as bad as the Keppra) But again, after all these changes, my ALT levels remained high. 

(Side note -During this time, I'm getting fairly regular MRI tests done, which keep coming back saying "its stable and not moving". I had an MRI on the 16th August 2022, and my oncologist said it was under "excellent control with no sign of progression" I then had my next MRI on the 29th November 2022, which came back as "no progression and under control.")

Finally in September 2022, my GP decided to get all my bloods checked, instead of the specific ones my oncologist was asking for. It came back that I had a vitamin D deficiancy ("below 12"). They put me on a course of vitamin D3 3,200 supplements, and by December 2022 my bloods came backing saying my ALT levels were back to normal ("normal range"). My fatty liver symptoms have cleared up, and along with some Enstilar, my psoriasis has cleared up and my joint and muscle pains, while not completly gone, have subsided substantially. Fortunatly during this time my epileptic seizures have also remained under control. 

So I assumed that I could now restart Chemotherapy as we had finally got to the bottom of all these other problems. I emailed my Oncologist asking this and recieved an email back saying - "At present we would not restart chemo. We would just monitor with MRIs. If there was a problem on a scan or you rang with a problem that's is when we would reconsider chemo. We have no evidence your tumour is growing, so we will potentially be using a chemo that is not working on the tumour but giving you side effects. Also, the longer your liver has to recover the better, it means any chemo can be given when needed. Hope all of that makes sense." 

In all honesty, it didnt quite make sense to my laymans ears and I felt quite deflated and disappointed, as my mission for 2022 was to get all my side issues sorted out, so I could start Chemotherapy.

So I guess what I'm asking is, does this all seem pretty regular, standard stuff, or do I have cause for concern?

Sorry for the long rant, and I hope it at least makes some sense. I've just been a little stuck recently and not sure who to ask about this kind of thing.

Thank you,

Aaron.

  • Hi, first of all there is protocol and oncologists are obliged to use it with very few exceptions (or they can get in trouble). The best oncologists, in my view, are flexible and adjust everything based on the individual. For example standard says "grade 3 == radiation". But there are many types, schedules, plans and doses of radiation, and you could also have simply said, "no". In which case the NHS oncologist would probably fire you and refuse to see you. Most likely. But other oncologists would find other ways to proceed, eg chemo, and which chemo, and what dose. You have these approved treatments in your arsenal: 1. surgery (many times) 2. radiation (usually but not always once off) 3. chemo (temodar or pcv or lomustine+others). As the choices are rather limited, I agree with your oncologist in everything he said, let sleeping dogs lie, let your liver and your bone marrow recover from the chemo assault (even the one cycle), and pray to God that many, many years pass before you need your next treatment. Assuming your MRIs are clear, and you are not having more symptoms, your oncologist is spot on, in my view. Having said that, oncologists have a very hard job, because typically cancer always wins. As a result there is no "correct" treatment, there are "approved" treatments and "golden standard" treatments, based on studies and other factors, so you, as a patient could draw your own path if you so wished. What I do not understand is how did you manage to be D deficient to the point of showing up on a blood test, could you please remember what was your diet like? Did you ever take any supplements? Did you go outdoors and holidays to hot countries? It is so intriguing you managed to become D deficient!

  • Thanks for the reply, akist. Much appreciated.

    Much of what you said made perfect sense. The part I'm still struggling to understand is - I was in the same boat back in January 2022 when I had one cycle of chemo, and was going to continue with chemo. My MRI's were coming back with the same result as they are now. "stable".

    And along with my oncologist and GP, it was as if we spent 2022 trying to eliminate what was causing the problem with my liver (elevated ALT levels) so I could then proceed with chemotherapy, as that was what was preventing me from receiving chemo. To my layman's ear, it seems counter intuitive to only start chemo again when "If there was a problem on a scan or you rang with a problem that's is when we would reconsider chemo" Why not start chemo when the tumour is not, active, for want of a better word? But, I also realise that things appear at first to be counter intuitive, but are in fact, correct. 

    With regard to my vitamin D deficiency - My diet was fairly mixed. I was working in construction, so I'd often grab a sandwich or pasty from a garage or shop, while driving around. But apart from that, I had a fairly standard diet, I suppose. Gravy dinners, salads meals, pasta, cereal, toast and coffee etc. Nothing out of the ordinary. Manuel job, so I kept fairly fit as well. I didn't take supplements (I do now). Like I said in my first comment, I had/have chronic psoriasis, so I never really went out in the sun, and very rarely went on holiday anywhere hot. Was always told I should go out in the sun, but depression and such at the time, prevented me from doing so. I'm also not a big fish eater. So it was a recipe for disaster really lol. What's the usual method in finding out if someone has a vitamin D deficiency?

    Aaron.

  • Hi Aaron

    I can empathise with your frustrations with the delays to your treatment. 

    Your scenario is different to the journey I am supporting my husband through so I can't fairly comment. 

    Hard and frustrating as it is you need to trust that your oncologist and team know what's best here and will  restart treatment when your body is in the best shape to cope with it.

    the only Vit D issues my husband had resulted from overuse of a specific blood thinner. He developed osteoporosis and was given a calcium and Vit D supplement to try to reverse the effects. Might be worth checking with your doctor if the deficiency could be linked to any of the medication you have been taking.  Just a thought.

    Please remember you can also access Ask and Expert through the online community or via the helpline.

    Hope you get some answers soon and can restart your chemo. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Wee Me,

    Thanks for your comment. Sorry to hear about your husband, I'm going to read your profile and story after this.

    Thats interesting about your husbands Vit D issues. I remember Osteoporosis being mention when my deficiency was discovered and they were a little concerned, like they were with your husband, that I wasn't processing calcium. 

    Since Iv'e been on the Vit D supplements, I must say that I do feel generally better within myself, if that makes sense?

    And yes, I agree. I think the Keppra was definitely playing a part in the hold up of my treatment, as I seemed to come out with every known side effect associated with, Keppra. 

    Thanks again,

    Aaron

  • "But if your cancer is dead slow then radio/chemo will be less effective (or none at all), in other words you are poisoning your self for very little gain." Thank very much for that explanation and your whole comment. That makes things far more clear.

    The one other thing that I'm still a little unsure about is as to why they were fine with giving me Chemo back in January, but they won't now? And as I say, the tumour according to the MRI's hasn't changed throughout the whole of 2022, since January. But your answer must be the only explanation, I suppose. "If the surgery and radiation have managed to kill off the grade 3s, perhaps there is no target left for radiation or chemo to be of benefit at this time." Do you think I could ask my oncologist your quote, as a question? If that makes sense?

    Yeah, I was apparently below 12 with my Vit D deficiency. And now, I'm back in the "normal" range.

    Thanks again for your time.

    Aaron.

  • Standard of care, golden standard and whatever else they call it, dictates that grade 3 = surgery followed by radiation + adjuvant chemo and then 6 or 12 cycles of chemo. This is the decided "standard". Back in January 2022 they were following the "standard", no questions asked. They were doing what's dictated to them by NICE.

    Due to circumstances, the "standard" got interrupted, not because of a whim, but because they physically could not administer chemo due to your liver, so they had a gun in their head so to speak. After 12 months the MRIs show that there is no cancer there, no target for any further treatment. So it makes sense to "wait and see".

    But this is with the benefit of hindsight: they know now you are (almost) cancer free, but they had no idea what might happen 12 months ago. In other words. 12 months ago you could have a scan say in March 2022 and it might show a huge explosion of cancer in 10 different places in your brain. Even though you just had surgery and radio, they would say "unlucky, it happens". And it does. Sometimes the cancer gallops *during* radiation and chemo. You cannot even go 3 months. And sometimes you go 20 years without any issues. In other cases you do not even need radio, just the surgery and then wait and see. But they have no way of knowing, there is 0, absolutely 0 guarantee which way it will go, for any glioma. There are statistics, but if you study a bit of math you will realise that you are you, not a statistic, and you (and doctors) cannot tell how it's going to develop, with or without this or that treatment. They know the (long) run, that is all.

    So, they just follow protocol, which is based on statistics, and it is sensible and correct, because it applies to MOST people and without a magic ball to tell the future.

    In my case I had surgeries, did a few scans months later, there was no enhancement, happy days. Enhancement usually is bad news. You got to learn to read your own MRIs by the way. Just ask them to give you the CDs. You said you are a builder, so it should come easy to you being practcal man dealing with "nuts and bolts". Then I had another surgery, they said "grade 3", and off they sent me for radio and chemo. Not waiting for another scan. Because, protocol. I declined radio, but succumbed to chemo. On restrospect I should have declined chemo too, at that time, but I did not know better. And the oncologist would have fired me.

    So the result is, no one on this planet can tell how it's going to progress. You can go for 2 years or for 20 years without any treatment. Statistics show an average life of 15 years with treatments (you said you have oligo), but the standard deviation is quite high, which means there is a lot of "very unlucky" and "blood lucky" people out there.

    I am in total agreement with your oncologist, I think from what I see he is a good man, and yes stay off until the MRI shows growth (enhancement), or you start having serious issues (depending where the cancer is and which area of the brain has got hit). Keep a daily log of your symptoms, date/time, symptoms. In case of seizures also record amount of physical activity on the day of the seizure and amount of sleep the day before. Keep this log, and every time you get a twitch or a tingle go to your log and check "have I had this before?".