Husband's Grade 3 Oligodendroglioma

Hi Glenn I have had a look into cbd oil with THC and because it is classed as full spectrum and had THC in it they have classed it as illegal in the UK for the foreseeable future,its the THC that gives you the high hence it being illegal, but still a hell of a lot safer than drinking etc

Kind regards Darren 

Go for it, Darren! And ask them to confirm what type of tumour it is. They've had long enough to make the diagnosis.

Ask why you haven't been offered surgery to remove the tumour. In my husband's case, the outcome of the initial . surgery was disappointing because they could only remove 20% of the tumour. It left us incredible deflated and upset. But when they gave us the explanation about the remaining tumour being diffused over sensitive areas of his brain, we understood. Plus we know that further surgery isn't possible so the radiotherapy and chemotherapy are his only hope going forward.

We've found that good, solid information and communication, are the key to our peace of mind. Once you get an accurate diagnosis, you can read up on relevant, helpful information. Ask other lovely people on this forum. It all helps.

Check out Dr William Li's Ted Talk on YouTube called 'can we eat to starve cancer?' Be armed with questions for the oncologist. 

There are other valuable sources of info on YouTube. Subscribe to Macmillan's YouTube channel. it's so helpful. Macmillan's have a great array of books they can send you if you can't find them in your hospital. They're written in plain English too.

And please do ask them about the specialist nurses being available. Charing Cross can't be the only ones to provide this valuable service?

Pip

Hello Darren, please see below details of PCV. My husband had the Vincristine (IV drip) and the Lomustine (4 capsules in one go!) at the hospital yesterday. The Lomustine capsules, he brought home and are to be taken in the evening with his meal...again 4 capsules in 1 hit. 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/pcv

Your oncologist should be tailoring your treatment to your tumour type. 

Re the dog worming tablets, I think Glenn mentioned it further up in the comments and I found a couple of newspaper articles online on the subject. Very interesting! We've decided to go with the chemo first before we consider the tablets. I'm open to most things when it comes to helping my husband, including diet, THC and even what dogs eat!  Luckily, he trusts me to make enquiries with the GP/nutritionist/oncologists etc even if he has no idea what the heck I'm on about.

This is a hard time for you and your wife. I know it is for us. In the beginning, we had many sleepless nights filled with tears, worry, FEAR for the future. I hope you can give each other strength during this time. I know it's a bit of a cliché but it really is good to talk to each other. Do you have family and friends who can 'hold your hands' and support you?

We reached out and shared the news of the devastating diagnosis with our friends and family. We asked them ALL to pray to whoever they pray to. I asked his family in particular and our mutual friends to message him directly and regularly, to support him, to check on him and send him love and positivity. It's really helped.

Pip

Hi pipcy, they said originally due to the size and location of the tumour that if they attempt to remove it I will end up paralysedans that it is diagnosed as a grade 3 Oligodendroglioma of the front right hand side of my brain and now measuring 100mm x 65mm and currently stable after 5 months of chemotherapy tmz tablet form only I am now currently 10 appointments left out of 33, st luke's are great I just wish they were more forthcoming with plans etc and treatment ideas

Darren 

Your situation is identical to my husband's. He also has it in the same place. I suspect the oncologist will give you more information about the next steps when you meet him/her next week. We saw my husband's oncologist when he had 5 days of radiotherapy left. It was then that he went over the chemotherapy plan again and also told us how they'll scan him half through the treatment and how they'll monitor the state of the tumour with regular scans.

I don't know if you know this or not (I certainly didn't until Macmillan told me) but there are a couple of NON-means tested benefits that are available. The New ESA and the PIP (Personal Independence Payment. Give them a shout. They helped me fill in the PIP form as it's a scary one but the ESA is a doddle.... 

Darren

 Thanks for replying, did not know about the THC bit, as you say, there are worse things to become addicted to.

Glenn

Hi pip

Just a quick question, did your husband lose the power in his left leg and if so did he get prescribed anything for it, I seem to get a dead foot and it travels up my leg as the day goes on the only steroids I have are for my tumour  dexamethasone which I take in the morning and lunch, my leg was ok after the biopsy back in May and whilst I began my chemotherapy tmz but now it seems to have become increasingly annoying, I will speak to the team tomorrow when I go for my radiotherapy for any additional information 

Regards

Darren 

When did you have a scan last? You may need to book in one to see what's happening, else it is mostly supposition.

You can also visit more surgeons to get more opinions - they may not be able to remove all the tumour, but a large % can be better than nothing.

If your biopsy showed oligodendro and at those sizes and non operable, why did they not give you lomustine? Have you read the biopsy? Is it IDH1 and methylated? (most oligos are).

Hi

I had my last mri just before I started my radiotherapy 5 weeks ago I have another 10 sessions then I am due another scan, but they have said it will be a muddy water scan as the radiotherapy will still be in my system, I was only offered tmz chemotherapy as we didn't know about other types as it was all new to us, we have just got the histology report for the biopsy report which shows the IDH1 and methylated on it but to be honest I don't understand all the medical jargon and have asked for a meeting with our oncologist consultant this week

Hi Darren

My husband's left leg and foot  became 'dodgy' a couple of years before the diagnosis. It's one of the things we all noticed, including his work colleagues. He would literally 'slap' his foot down on the ground when he walked, causing him to limp. Infact, he still continues to do so. But I don't think he would call it a 'dead leg'.

After the surgery, the oncologist said it's because the tumour is affecting that sensory part of the brain that controls the left leg and foot. They can't touch it either as it would paralyse him. Hence the treatment plan he's on. 

Like your situation, his Oncologist was considering squeezing in a scan after the radiotherapy finished. But also as per your Oncologist, he said that we probably wouldn't get an accurate picture due to the radiotherapy. So, hopefully, he will have 1 done half way through his chemo.

Akist is right, query why they didn't give you PCV. It seems to be the most common treatment for this type of tumour.

Are you ok with the Dexamethasone? My husband had the most awful side effects when he took it after his initial diagnosis and then again after surgery. He would literally hiccup multiple times CONTINUOUSY (24/7) and have stomach spasms at the same time. Poor love, used to be physically and mentally exhausted.

Take care

Pip