Newby - Low Grade Brain Tumour

To be honest I can't remember, I know he said the type of tumour I have/they think I have grows into healthy brain tissue.

I know, having read up on them, Astrocytomas can cause tumours in the spine but when I was in hospital the first time when I was diagnosed they gave me a CT scan, not sure if it was just a scan of my head or full body, if the latter surely they'd have shown up on that?

Anyway, they took another 5 full needles of blood so something may show up in that.

In agony this morning.

It sounds like you are doing well, I had a tumor removed from occipital lobe(rear right) in March mine is from advanced bowel cancer and certainly came as a shock. After the operation to remove it I was pain free and back at home within 3 days, I to was tired and unsteady but this was due to the steroid (Dexamethasone) to keep the brain swelling under control, but as the medication reduced my steadiness improved, Radiotherapy was a walk in the park although I dont know if my hair will ever recover, I am now half way through chemotherapy that by a twist of fate I signed up for allowing my tumour for research and the results are in they did something called genomic sequencing wich has given very detailed results of my brain tumour and show that the chemotherapy I had 5 years ago did work and be potentially more effective than my current cocktail, so it will be all change in a couple of weeks.

I hope you don't mind me waffling on about my treatment but I hope it can easy your nerves about future treatment, remember surgery is about dealing with the symptom and radiotherapy/chemotherapy is about trying to deal with the cause so that you don't get the symptom again.

Good luck.

Hey, hope you are doing well, you're not waffling on at all, appreciate anyone replying and telling me about their experience(s), it does, as you say, put my mind at ease somewhat.

Unfortunately the radiotherapy had to be postponed, I've been waiting for an operation on a double inguinal hernia for 5 years and things have gotten so bad with the hernia on my right side I'm worried that it's going to rupture.

I put this to the nurses when I got to the Rosemere Cancer Centre in Preston the day I was due to start RT, I was concerned that if it ruptures when I got to the chemo part that I'd get an infection that I couldn't fight off because my immune system would be compromised due to the chemo.

The nurses left it up to me whether to go ahead with the treatment or postpone it, so I postponed it as it just so happened I had a telephone appointment with the doctor that evening re the double inguinal hernia, the specialist thinks I've had this tumour for close to 5 years given it was the size of a lime so given they've managed to remove 70% of it I figured it wasn't going to grow back to the size it was and/or cause me any problems anytime soon.

Spoke with the doctor that evening and the next day received a surgery date for the double hernia (28th December).

Will be a big relief to get that operation out of the way as like I say I've been waiting for 5 years since before Covid was even a thing, still been going to work with it (and this brain tumour unknowingly of course) and gradually making things worse, they initially told me 5 years ago that the NHS wouldn't operate on them as they were trying to save money but if they were causing issues (they were as I was getting up 5-6 times a night to go to the toilet as the problematic hernia is putting pressure on my bladder and makes all sorts of rumbling noises so I wasn't and I'm still not sleeping properly) they would refer me to a private hospital and pay for the treatment (strange I know given they are trying to save money) as I can't afford to go private.

Cruelly, back in April, I was just about to have said double hernia operated on at this private hospital when I had the seizures that led me to be diagnosed with the brain tumour, soon as I told them about the tumour they refused to operate on the hernias as they said they weren't equipped to deal with the possibility of me having a seizure whilst they were operating on me like the NHS hospital I attend for the brain tumour appointments are, so I'd have to speak to the doctor to get a letter to "expedite it back to the NHS trust".

Anyway, I have another MRI scan with contrast on the 12th of this month, I think it's both a planning MRI and to see how much, if any, it has grown back since the resection back in June.

I'm thinking they may do the 5 weeks of radiotherapy just before the hernia surgery in December then the chemo straight after the hernia operation, I'm no expert but I think that would make sense unless having radiotherapy would somehow make the hernia operation impossible.

Sorry for the long-winded reply, and thanks for the reply. good luck with the rest of your treatment.

It would be nice to know how you are getting along now. I had a kidney stone 5mm before my surgery went ahead for my debulk. I’m sorry about the hernia problems too. These problems just like mine and my family all seem to happen at the same time. I’m glad it wasn’t malignant and grade 2. Hope you’re doing well and keep strong. I’m sure you’ve checked for PIP support 

Hi and thank you.

I'm doing ok, started radiotherapy last Monday, it's going well, strangely I still get really anxious each day even though I know what to expect.

The fatigue once I get home from hospital after the RT seems to really hit me hard and I have to go back to bed otherwise the fatigue in turn seems to make me ill.

Anyway, that's week one out of the way, just another five to go, then the chemo.

As for the double inguinal hernia, I'm just having to risk it and do the RT and Chemo and hope the bad hernia on the right doesn't rupture, I did have an appointment on the 28th Dec but somebody told me there might be a cancellation list so I rang up and told there wasn't one but they could bring the appointment forward to Nov 16th, however a few days ago I received a text containing a link to the NHS patient portal which I logged into to find a digital letter telling me this has now been cancelled and has been re-scheduled for the 31st October, however this is only a telephone appointment.

The whole point of the original appointment I believe was for them to have a look at the double hernia (not the actual operation to sort them as I originally thought) so I'm not sure how they're going to be able to see it via a phone call.

I have sorted the PIP yes, my brother filled in the forms for me as I struggle with that sort of thing now, went through hell really sending sicknotes in that they kept asking for even though I had already uploaded them via their site numerous times, then had the assessment via a phone call which lasted 1 hour 58 mins.

I did ask if they could phone back later on in the day after 1 hour 28 mins as I was exhausted answering the questions and she agreed to phone me back at 4pm later that day after I had had a bit of a sleep, however 10 mins later she phoned back telling me her supervisor said we needed to complete it there and then.

I was on the phone for a further 30 mins before the assessment was complete, then I spent the next 2 days in bed as I was so ill, seemed to take a lot out of me, she kept asking me the same questions over and over.

Anyway all that's sorted now, thankfully, just got to crack on with the remaining weeks of RT then the chemo.

Will bob back on here from time to time to post updates.

I hope you're doing ok too (and you too Wee Me).

Back again, just over the halfway stage of 6 weeks of radiotherapy, was really anxious on week 2 and on one occasion had to raise my hand as my heart felt like it was going to jump out of my chest.

Realised I had been drinking one or two cups of coffee prior to setting off each morning so I've cut out the caffeine and things seem to be quite a bit easier.

Still getting extremely tired and my hair on the right side of my head (where the remainder of the tumour/treatment is being aimed at I believe) has started to fall out but this is normal I'm told, was still a bit of a shock to see my hair stuck to my hand when I was washing it but it'll grow back.

Getting a weak feeling on the left side of my chest where my heart is but I mentioned this at the hospital and they did some obvs and everything seemed normal.

17 Sessions/fractions down, 13 to go.....

Be strong buddy, my hair fell out where they had been sapping away but it’s grown back fairly well, If a lil fuzzy. I wore my bald patch like a badge of honour, if others don’t like it tough on them. But I hope you’re ok in general. If there is anything you want to ask me, don’t hesitate. I’m on a second type of chemo now. And keeping strong

 glad you sorted your pip. Everything helps

 and yes never be afraid or think something is too daft to tell them. They’ve seen it all and are there to help us

 good luck  

Back again, finished radiotherapy on the 24th November, still extremely tired almost two weeks on but that's normal I'm told.

Had the Keppra dosage upped to 750mg at night as since the operation to resect my chest gets tight, at first it was happening every other day but not as much nowadays but it does still happen.

This in turn seemed to make the weak feeling in my chest slightly worse, also started getting an itchy red rash on my right hip which coupled with the recent FDA warning about Keppra and DRESS syndrome, has made me somewhat worried.

Trying to see if the doctor will put me on a different ASM.

Other than that, I'm good, got a new date to see someone at the hospital about getting this double hernia sorted (12th Dec) then back at the hospital to see about getting started on the chemo Jan/Feb so at least I get a bit of a break to enjoy Christmas.

Hope your surgery went well!!!

Still waiting for the double hernia op, went to the appointment on the 12th and they're only going to operate on the right hernia (the problematic one), they're applying for funding so I'm still waiting for a date for the actual operation.

I'll be glad once that's out of the way, can crack on with chemo - then get looking for a new job as I was dismissed from my last job last week just before Christmas for long term absence (due to illness with the double hernia and brain tumour).

Hope you are all well and you managed to enjoy Christmas at least to some degree.