GBM Brain Tumors

Minx
Contributor

Re: GBM Brain Tumors

Poss, your words are true keep positive, smile, cry and enjoy what you can. Min
Reply
0 Kudos
Supporting_Mum_
Occasional Contributor

Re: GBM Brain Tumors

How is everyone doing, it's been a while since I've popped on.. life in general (aside from Mum) has been pretty hectic with lots of end of year things happening for my children. Mum is doing ok at the moment, well ok in the world of Chemotherapy and Radiotherapy that is. She has had minimal side effects, a bit of tiredness and hair loss at in the areas where the Radiotherapy is targeting. In general she seems cheery enough, although at times I doubt she is being honest with us and is just putting on a super brave face. She has had some issues with Temozolamide 140mg dose. It was causing her to feel like electric shocks all over, like she was constantly buzzing. Her Oncologist pulled her off it for a period of 4 days to see if it stopped, it did. He put her back on to it again at a dose of 100mg to see if the dosage was too high, unfortunately buzzing again. She is almost finished her first 6 week cycle of both treatments, will get time off over Christmas and New Year. Review with the Oncologist on 14th December will reveal their continuing plan for her care. There is talk of doubling the Chemotherapy dose for next cycle, why would they do this if she gets the bad (allergic almost) type side effects from it at 140mg...? Another question I have, coughing up blood? Is this a normal side effect of treatment? or, should I be more concerned. Mum is going to tell them today at her radiotherapy session, I can't help feeling this is the start of a downward slide :( Dx
Reply
0 Kudos
Not applicable

Re: GBM Brain Tumors

Hi wish I could help but I had no side effects on Temozolamide while I was on it. I was having 250mg each time. the only side effects I had was constipation!!!!!!! Pain in my neck as if I had slept wrong and a letting down feeling in my breast as if I was breast feeding again and very sore breast.
Reply
0 Kudos
Groenevelt68
Contributor

Re: GBM Brain Tumors

They will take into account the reactions of the chemo, but I do not think the coughing up blood is good and should be checked. I am sending all my thoughts to you and your mum for the up coming visits, wishing all the best
Reply
0 Kudos
Supporting_Mum_
Occasional Contributor

Re: GBM Brain Tumors

How is everyone doing? What's going on for yourself or your loved one? Mum had her first progress MRI on Friday last week, review with Oncologist is on Friday this week, we should find out details of the MRI while we are there. At the moment we (as a family) are finding it hard to cope with the following: No short term memory No concentration No logical thinking Laying blame for things she has done on my children (her grandkids) rather than admitting she broke or damaged something. Not being truthful about how she is feeling or changes in her health and well being Mood swings Change in attitude Outward spoken when in previous times, bit her tongue I know all of the above are part and parcel with GBM and brain surgery in general but when it's actually happening to someone so close to you, someone who has previously NEVER been like that her entire life, it's heartbreaking. As for Mum's health in general, she is fairly stable. Her legs get spasms all the time in the night and she now wears a special boot on both legs to combat the spasms. She seems to have some mild incontinence but hasn't spoken up about this so I can arrange her the things she needs, I'm too scared to ask her about it as I know it is embarrassing for her to admit. My Aunty is a nurse, she is keeping a close eye on things for me as I update her and will have a chat to Mum when the time comes. Sleep is still a big issue, I think her lack of logical thinking comes into play here. If my children are awake for any reason in the night and wake Mum, logically she won't stay in bed and allow herself to go back to sleep, instead she gets up and spends the next couple of hours awake trying to keep busy around the house. Therefore, exhaustion is another big thing for her too. She won't sit still for more than 20 minutes or so, even eating a meal she is on the go, coming back and forth to it for a bite here and there. First round of chemotherapy and radiotherapy finished in the 2nd week of December, 4 weeks break is almost over. I expect that the oncologist on Friday will let her know when it all starts over again. Sorry for not checking in more often, hours blur to days, days blur to weeks and well life is pretty hectic between caring for my children as a single mother as well as trying to assist Dad in caring for Mum... Dx
Reply
0 Kudos
Melanie
Contributor

Re: GBM Brain Tumors

I hope you got positive news on your last visit xxx
Reply
0 Kudos
Not applicable

Re: GBM Brain Tumors

Hi Rain76 I have a Grade 4 GBM I dont think the Nuro surgeon's are trying to be brutual. Its not time to be cotton wooled the truth they have to tell how you it is. Yes its very hard to hear the truth. My nurosurgeoen told me to go home and tell my kids to give me grandchildren early ummmmmm nah dont think so they are 16 and 14 and I able only 38 I am to young for grandchildren. Its not that there is no hope it reality. Dont be angry towards them it will feed onto your husband. I started 4 years ago with a Grade 2 yes its jumped to an agressive grade 4 GBM but you never no. Keep your chin up and be positive stay strong Poss
Reply
0 Kudos
Supporting_Mum_
Occasional Contributor

Re: GBM Brain Tumors

Sorry for not updating straight away, life seems to take over from time to time. I have a little one starting Kindy this week too so have been busy getting everything ready for her. Mum had her MRI on the 11th January and her follow up on the 18th January. Good news, no new growth. Her treatment for now will be NO radiotherapy and double dose (250mg, started on 140mg) of Temozolomide, 5 days consecutive and 3 weeks break in between each round. She started back on Temozolomide today... already suffering quite badly with it, unfortunately. We have to take her for a blood test on Monday (Day 5) to see what her body is doing with it and see her oncologist again in 3 weeks from now. Otherwise I'd say she is stable, most things she is experiencing have remained the same for around 1 month or so now... I hope you are all doing ok, that you enjoyed your Christmas and New Years as best you could. Dx
Reply
0 Kudos
husbandhasGBM
Occasional Contributor

Re: GBM Brain Tumors

Hi Femme, I'm new to the site and inspired to read your comments about your daughter's progress. Do you mind if I ask if her tumour was removed, partially or all, and if she had any symptoms, eg weakness, speech, etc - and if she did, did any of this get any better over time? I've been told that although there is someone out there close to four years, that it's very uncommon. Take care,
Reply
0 Kudos
husbandhasGBM
Occasional Contributor

Re: GBM Brain Tumors

Hi Femme, I'm new to the site and inspired to read your comments about your daughter's progress. Do you mind if I ask if her tumour was removed, partially or all, and if she had any symptoms, eg weakness, speech, etc - and if she did, did any of this get any better over time? I've been told that although there is someone out there close to four years, that it's very uncommon. Take care,
Reply
0 Kudos
Post new topic
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.