Glioblastoma- the confusing, scary and unknown!

[1232michelle]

By the way I have started reading Days like these, i am up to page 40, ive cried, ive nodded, ive laughed already! It seems to be comforting in some weird way!

[Groenevelt68]

Hello 1232michelle, In regards to the inappropriate communication, it can be one of the side effects of the tumour. The pressure on the brain from where the tumour has pushed the brain around creates differing symptoms for each person. On the 1st June last year, Pieter forgot to go to work (I was in Bris at the time for work training) and got a call from staff indicating that the bus run had not started (Pieter' job), so I rang around looking for Pieter, once I found him, informed him that it was a work day. Pieter went to work and completed the run (which should have taken 20 minutes but actually took him 40 mins). When he arrived back (completed the run) staff noticed left side of face had dropped (like a stroke) and some difficulty with words, and the staff asked Pieter to go to hospital. The staff then rang me to inform me of what had transpired. Once I got back to town I went to hospital and staff were concerned with Pieter' blood pressure (they were having trouble getting it down), the next day I took Pieter for two CT scans, but that evening the hospital had arranged for airflight to PA due to bleeding in the brain (tumour right frontal lobe with three cysts attached and one of the cysts burst). Once there we were informed that Pieter has a tumour and they will arrange tests and surgery to find out what form of tumour. Within days we found out it was a GBM. The GBM was removed and radiation along with chemo was started. At first it was the short term memory that was effected, with occassionally saying things that was inappropriate. By the time radiation and chemo had finished a second tumour on left forntal lobe had been diagnosed but due to the radiation and chemo it did not get any larger than approx 1cm. We then had chemo for 5 days once a month along with MRI every second month. In Sept last year a small blemish was spotted on MRI in left temporal lobe and by March this year that blemish is now a full blown tumour. No surgery but another 6 week round of radiation and we see the chemotherapist tomorrow and see what she can offer. In the past month we have noticed that Pieter forgets words and uses hand signs to explain what he is trying to express, but now Pieter is loosing more and more words (some words are coming out without being recognised at all). Some of the effects Pieter has gone through are, issues with bowel and bladder, loss of control of body temp, changes in food likes and dislikes, inappropriate words and or loss of words, loss of small amount of vision and hearing, along with loss sexual desire (where in some people the sexual desire goes up). Every person is different so the experiences will be different. Chemo is given as GBM has more than one type of cell involved and so it requires more than one type of treatment to do long term damage. Most GBM has about three different cells structures within the tumour and so just one form of treatment will not kill all three types of cells. People (wider community) can be petty when people with GBM behave in a manner which is not deemed socially exceptable but this is generally due to lack of information, when Pieter is in the community I let him chat but watch the people with whom he is chatting for signs of confusion or misunderstanding, then I explain what the condition is along with the symptoms and find that people are quite happy to continue conversation. Some of the things I have found to assist with obtaining control over what is happening are, asking lots of questions; getting a greater understanding of the situation; making a start on the funeral arrangements (I am dearly wishing that Pieter stays with us for awhile yet) I felt that starting this now will take pressure away for me later (as we do not always think as clearly when the ones we love have pasted away) speaking with Pieter what he would like, I have also looked at cremation jewellery (jewellery that is designed to carry a very small amount of ashes that can be worn as necklace, bracelete, some very beautiful pieces (I have put in my order, and it made me feel great that I was able to cross off an item off my list of to do). The best thing is to document what is happening with your father, enjoy all the time available, and remember it is the tumour that is effecting your father (that your father would not normally behave like this). Good luck, have a great time on holidays.

[Summer_Fun]

Hello people Thank goodness I found this forum! I joined the NZ Cancer Society forum but noone uses it. We took my Dad to A and E six and a half weeks ago because of strange behaviour. He is a retired teacher but was driving tour buses as a hobby/part time job. He ended up in surgery the following Wednesday and we are waiting for radiation to start within the next week or two. He has a Grade 4 GBM on his front left and they removed 80% of it. I understand what you are all going through, it is scary and so sad. My Dad was so fit and healthy. I help him every day as much as I can, but I feel that my stepmother is stressing him out too much by asking him to do chores around the house. His front left affects his motivation and decision making, so a simple chore is a big deal for him. I end up doing his chores so that he doesn't get in trouble lol. The strangest thing about this whole thing is that Dad and I are having the best relationship we've had in our life. It has been very rocky since my Mum died when I was 11. He enjoys my calmness and help. I saw my GP yesterday and asked him the long term prognosis, which I haven't asked yet. It could be 12 months (it usually is), but I am looking positively and taking each day, enjoying Dad NOW. I'm not sure if the rest of the family have thought about it. Anyway, sorry for going on but I'm glad to be on this forum Kia Kaha (Be Strong)

[Rain_76]

Hi All, I have just been told about this forum, wish I had this last July, my husband went downhill in 4 days and was operated on 4 days later, the nerosurgeon told me to just take him home and let nature take his course, of course I went through with the operation, how could you not give him a chance, then got told it was a GMB 4, and not to bother having treatment, but got to see an oncologist who started treatment, they cut out all of the part that his emotions were in, so he cannot show emotions, he will answer you if you say are you scared and he wil say yes.We have had the 6 weeks radiation and chemo, scan at xmas,2 months after the treatment seemed fine, then were also havreing the chemo tablets every month, then in feb we had another scan and now there are 4 tumors, they have sent us home, that's it, he is such a lovely man, we have been married since i was 17, the kids 29 - 34 aren't coping, our son the youngest just cries, which breaks my heart, and the grandkids are upset, i have organised his furneral, as it is easier now then later, which is so wrong when he is stil here but better than later, we talked about it all, make sure you transfer everything now into your name while they can sign and understand the situation, gary has been so good, but the memory is starting to really go, and we don't go out hardly at all because he knows the words he want to say and mean just don't come out the right way, lucky we live in a small country town, thanks for the chat, enjoy every minute.

[peanutz]

Hi Michelle, I think medication like Dexamethasone can change people a bit. The way the person deals with having terminal illness can be the cause of problem as well, I believe. My partner doesn't seem to hold back his thought at all. When he isn't happy with someone, he tells them off right away. Things can get worse when the other party becomes nasty as well. *SIGH* As for your question about chemo.... why? Well, the tumour can grow bigger as with my partner. His scan in January (5 mths after surgery) was good. Then, out of no where in March the tumour was back. I read from some where that the tumour can double it size in 2 weeks. Can the tumour spread? I haven't done much research on this but again with my partner, the scan he had 4 weeks ago shows a new spot around 7mm in different part of his brain. We just had another scan this morning so will know more soon.

[peanutz]

Hi Rain 76, My partner was diagnosed in August last year, similar time as your husband. Where are you located? Have you explored other options? I believe your husband had Temodar/Temozolomide so far. There are other chemo as well. One of my partner's doctors recommended Carboplatin and Etoposide after Temodar failed him. Avastin is also an option if you can afford. It is ridiculously expensive. There are also some clinical trials. My partner's tumour regrew in March. I seek second opinion and now my partner is doing a clinical trial. If you don't live too far away, you can also get cabcharges to go to the hospital.

[Summer_Fun]

My understanding from the radiation oncologist is that it does not spread to other parts of the body, but they could get another tumour on the brain, which appears to have happened with peanutz partner. One thing that is hard with this type of tumour is the moods of the patient and all people around. I had a falling out with my sister when she was over from London for a week (she snapped at me several times and made me feel like a piece of dirt), and my stepmother is difficult to get along with at the best of times. Good to talk to people here 🙂

[Rain_76]

Hi Peanutz, we were asked for $25,000 to $30,000 to go on the trail, gary said no, then a couple of days later we recieved a phone call saying we got on the free trial, but as we live a 6 hour drive south of perth, which gary cannot handle anymore because of his weight lost, the long sit makes his legs numb by 50klm up the road, and he cannot fly anymore because of the seizure we had last time we flew, and gary has said enough is enough, and i respect his choice, It is not easy living so far away from medical help, but this is where he is happy, and I am having time without leave from work, I have the best boss going. It is 11 months to the day since this started, I can count the visitors on one hand, makes me so mad, but everyone says people deal with it in there own way, doesn't make our job any easier being the main carer, there is only so many movies to watch although gary would watch them one after another every day if I didn't take him for drives. We have been married since I was 17, one of those couples to survive, but look what happens in the end, sometimes I really feel like punching someone, but of course you don't actually do it, all types of feeling come and go hey.Anyway hope things are going well with the trial with your husband, I am interested with his outcome. Take Care.

[peanutz]

Hi Rain 76, Who did you deal with about the Avastin trial and how long ago was that? We only looked into the Avastin trial in March which is just after they closed the recruitment. The quote is from our oncologist. Unfortunately, the trial has to stop due to a scan result on Tuesday which doesn't look good for the new tumour which grows bigger while the original one stays the same. I don't know how they decide that we should stop the trial. I feel quite grateful in a way to know that after 10 months my partner is still doing considerably well. I also agree with Summer Fun that it's great to talk to people here. I deal with this situation by talking to my partner, my best friend and my boss. I find talking about it seems to help me get it out of my system.

[Rain_76]

Hi peanutz, We dealt with our chemo doctor at Sir Charles Gardiner Hospital in Perth, after he told us about the multi tumors gary has now has, that was in late Feb this year, we have 4-6 months from then, so 4 months have now gone, doesn't leave much, but everything they have said has turned out, so why think about it hey, Gary is good, cooking tea now, mind you he is not doing so good but refuses my help, so what the hell, he has not had chemo since Feb, only his seizure meds (keppa) and is doing so well, the only problem is lost of words sometimes and he wants to know everything I am doing, and he focus on one thing at a time, drives me insane sometimes, but i get over it quickly as he is the one dealing with this all, it is 11 months to the day, who would think that life changes so fast, but I think we are blessed in a way as who gets to spend quality time, however painfull, with the one you love, thats what gets me through some days, otherwise you would go mental hey. Anyway stay strong and try to laugh, it does help sometimes.