Recently diagnosed oligodendroglioma stage 2

Hi MariaGA

Sorry I can't offer any advice or words of wisdom on PCV chemotherapy. My husband's chemo was oral. 

This group is really supportive though and made up of folk with a wide variety of experience so I'm pretty sure someone will be able to answer soon.

It’s always good to talk so remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Stay strong. Stay positive.

sending you love and hugs

Wee Me xx

Hello MariaGA,

I am sorry to hear about your diagnosis. My husband was diagnosed with a Grade 3 Oligodendroglioma in 2015. He had surgery, radiotherapy and PCV chemo at the recommendation of his Oncologist. We were advised that my husband had the chromosomal changes in his tumour meaning he was likely to have a good response to PCV.  Everything was explained well and he went ahead with 6 cycles of chemo. He had his latest scan a month ago and there is still no sign of the tumour returning. His Oncologist told him when he completed his treatment  that she didn't expect it to return for "teens of years".

There are a few negatives of course but we have no regrets. He has memory and cognition issues, fatigue and some unsteadiness with his walking but he is still alive and leading a happy life. He has good days and bad days. 

I think it is really important to get the opinion of you Oncologist. Ask about short term and long term side effects of treatment as well as your prognosis without it. You have a Grade 2 so it may be a little different to my husband's case. 

I hope this helps in some way and I hope that things go well for you whatever you decide to do. 

Best wishes xx

Dear KatFan,

Thank you so very much for taking the time to respond to me and sharing your and your husband’s experience with PCV chemo. I am delighted to know he’s leading a happy healthy life, and I will most definitely ask about short and long term side effects of the chemo with the oncologist. I have already been told that it will affect my fertility, so that’s also something additional to think about, but having all the facts on the table I think will help me make the best decision. 
How did he feel during the treatment? Were the days of taking the tablets OK-ish with side effects? And the days of the intravenous drug in hospital? I’m trying to put together a plan in my head work-wise to see what changes I will have to be making on my day to day, as I need to return back to work shortly and I’m dreading it a little to be honest!

The oligodendrogliomas are apparently quite rare, so I do appreciate you reading my post and replying with your story. 

I wish you both all the best as well. Hope I am as lucky as your husband with my treatment and it goes away and I can lead a normal life.

xx

Hi again MariaGA.

My hubby started off quite well with his PVC. The first two cycles were easy for him, no nausea or fatigue. The third cycle was when the fatigue started to kick in. He also had some nausea and vomiting after a few days of his Procarbazine. They gave him some Ondansetron tablets to take during his days on the Procarbazine which really helped.  

The fourth cycle got "interesting". He developed an allergy to the Procarbazine and it had to be discontinued. So he didn't complete the course of that one.

If I remember correctly (and forgive me if I'm a bit unsure of exact details because it's about 6 years ago), on day one of each cycle he would go to the chemo unit at the hospital where he would have the IV Vincristine and Lomustine tablets along with an anti nausea tablet. He would be there for a couple of hours and was then be able to go home to rest up.

On the same day , he took the Procarbazine tablets at bedtime then for a further 9 days ( I think).  Then he would have a break until the next cycle. Each cycle lasts 6 weeks including the days when he didn't take any medication at all. 

He was very fortunate that he was able to take time off work. I think he would have really struggled to work due to the fatigue. I suppose that would depend on the type of work you do and how supportive your employer is.

What I would say is, don't expect too much of yourself. Go with the flow and look after yourself first. My hubby found it really hard and felt guilty for not going to work and insisted on going. I could see it was very hard for him and it took it's toll. He eventually made the decision not to go back and is glad he did. Don't try to be brave and fight! Put your energy into getting better. Get support with benefits and don't feel guilty. It's OK to ask for help. 

I hope some of this helps. Please don't hesitate to ask if I can help with anything else.

Take good care of yourself xx

Hi all 

I've got a grade 2 oli with codeletions etc , I've noticed big holes in my short term memory plus weakness on opposite side to glioma position. That being a frontal lobe, left side oli. I've only been told in last couple of weeks re grade of mine so want to find out more. So here I am poking around here! 

Hi Tess, 

From personal experience, I can’t say much regarding the short term memory loss, my oli was on the right frontal lobe, so I guess it doesn’t affect the brain in the same way of course. We’re on the same boat here, so if you want to talk or anything be at all, reach out! Do you have any radiotherapy or chemo to be had? How are you feeling otherwise? Lots of strength for you! 
Maria

I have stage three oligodendroglioma diagnosed in 2020 and had 6 courses of tmz chemo and 33 sessions of radiotherapy in2020 nothing since my oncologist consultant said it is dormant and won't do any more treatment until it wakes up,the left side of my body is numb most of the time and I need a walking stick to get about, sex drive zero, memory great and still here, they cannot give a prognosis on it and its currently 10.5cm x 6.5cm still working 4.5 days a week,just wish I could get a prognosis 

Regards Darren 

Hi. I was diagnosed with a grade2 Oligodendroglioma in my right frontal lobe. When they did the biopsy they caused a bleed on my brain. So currently going through physio to relearn to walk from the damage that caused. I have my first oncologist apt on the 29th when I'll be told what the plan is to treat, but I've been told it will be a mix of chemo and radiotherapy. Any suggestions of what questions to ask the oncologist would be appreciated. X

I would ask for a prognosis on the tumour, I had to have chemo TMZ first as they said starting with radio would cause to much pressure on my brain due to the hole from the biopsy, Ask what help MacMillan can give you they arranged alterations to our house, a blue badge,PIP which hospital are you at ??

Thank you for replying. I'm with Addenbrookes. I need to find out the plan, I think the waiting is the worse bit.