GBM Treatments - what to expect ($$$)

[storm]

Hi Nat (why Peanutz?) The day of the bad news ....Us - we heard from the surgeon the next day on his 5pm round, he gave just the initial news. In hindsight, him telling us just the minimum information allowed us a brief time to digest the initial shock... so unexpected so quickly after her operation, the finality with a short life reduced sentence, so not much time left, what is life, what to do, organise who to tell. We went for a walk within the hospital, Lorraine with bandaged head, black eye starting to show, to a type of visitors lounge area (well that’s what I call it). The surgeon's 2nd in charge/assistant surgeon (???) came looking for us, found us, and sat down with us for 1/2 hour. He had a direct manner (almost brutal), focused, very clear, stayed with us for that time. The news was hard/devastating confronting. An amazing and compassionate man. We both have high admiration of him. It’s probably one of the many stories of the quality of the people in the RPA hospital and there are many quality people there. Post operation - It’s a different life I found to tread when in the mist of brain tumours - takes a while to get a sense of place as I re-evaluated, what is around, what to expect with the progression of the brain tumour, where to find information, who to turn to. Trying to find some sense of a light at the end of the tunnel dealing with my stuff my grief, her grief, her daughter’s and granddaughter’s grief, her loss of work, the loss of money, my work, the loss of dreams. Ps don’t know if this helps for you - my concept of the oncologist and post surgeon is seeing the physical presentation of your partner, how your partner is coping with the chemo, his physical and mental reactions to the drug, to the life sentence, whether the chemo amount needs to be changed or Also allows you to ask what is going on anything new out there My partner is now taking 50 ml of the chlomipramine (start at 25 ml and progress in steps of 3 or more days till you get till 150ml to allow your body to adjust). Next MRI scan 9-10-2011. Her days are variable With mornings, she focuses on pushing her lethargy aside getting out of bed and then dealing with the day, kind of like of like taking one step at a time. Some days of depression - they pass. She has a belief that sustains her ... and I wonder if I would cope if the roles were reversed. We are going overseas in 2.5 weeks so we take chemo and associated drugs with us. We thought her treatment with chemo would finish then, but it is extended, for when I am not sure of– so that is a question we need to ask. Hugs Geoff

[storm]

Hi Nat (why Peanutz?) The day of the bad news ....Us - we heard from the surgeon the next day on his 5pm round, he gave just the initial news. In hindsight, him telling us just the minimum information allowed us a brief time to digest the initial shock... so unexpected so quickly after her operation, the finality with a short life reduced sentence, so not much time left, what is life, what to do, organise who to tell. We went for a walk within the hospital, Lorraine with bandaged head, black eye starting to show, to a type of visitors lounge area (well that’s what I call it). The surgeon's 2nd in charge/assistant surgeon (???) came looking for us, found us, and sat down with us for 1/2 hour. He had a direct manner (almost brutal), focused, very clear, stayed with us for that time. The news was hard/devastating confronting. An amazing and compassionate man. We both have high admiration of him. It’s probably one of the many stories of the quality of the people in the RPA hospital and there are many quality people there. Post operation - It’s a different life I found to tread when in the mist of brain tumours - takes a while to get a sense of place as I re-evaluated, what is around, what to expect with the progression of the brain tumour, where to find information, who to turn to. Trying to find some sense of a light at the end of the tunnel dealing with my stuff my grief, her grief, her daughter’s and granddaughter’s grief, her loss of work, the loss of money, my work, the loss of dreams. Ps don’t know if this helps for you - my concept of the oncologist and post surgeon is seeing the physical presentation of your partner, how your partner is coping with the chemo, his physical and mental reactions to the drug, to the life sentence, whether the chemo amount needs to be changed or Also allows you to ask what is going on anything new out there My partner is now taking 50 ml of the chlomipramine (start at 25 ml and progress in steps of 3 or more days till you get till 150ml to allow your body to adjust). Next MRI scan 9-10-2011. Her days are variable With mornings, she focuses on pushing her lethargy aside getting out of bed and then dealing with the day, kind of like of like taking one step at a time. Some days of depression - they pass. She has a belief that sustains her ... and I wonder if I would cope if the roles were reversed. We are going overseas in 2.5 weeks so we take chemo and associated drugs with us. We thought her treatment with chemo would finish then, but it is extended, for when I am not sure of– so that is a question we need to ask. Hugs Geoff

[peanutz]

Hi Geoff, Peanutz sort of comes from my Thai name which pronounce as 'Nut'. I prefer to write my name as 'Nat' though. Thanks for the info. It gives me some idea of what to expect. I am glad to hear that your wife is doing well or well enough to go overseas. How nice! I would like to take my partner to Europe for a few weeks next year. We actually started planning and got tickets a couple of weeks before we found this monster. We are not sure he would be well enough to go and no clue how to get travel insurance now. Have you got a travel insurance for your overseas trip? We are now in his 6th week of radiotherapy. His memory starts to go a bit, same as his health which seems to be up and down. His blood test is all good. His stomach feels a bit upset. He could still jog 4km last week and hopefully he could jog again this evening with me. I hope exercise is good for him. Next week, he has an appointment with a medical/neuro oncologist who will tell us when he will get a scan. Would it be MRI? I need a break, we need holidays but we cannot plan anything as yet. It is quite frustrating. Hope your wife's scan next week looks good! Nat

[storm]

Hi Peanutz From our experience your partner sounds typical with the process of the radiation and chemo effects They do say that exercise is good (I would assume to be done in moderation) Our experience is there is no travel insurance for my partner (for anything that is connected with her tumour) I have no problem though. Just came across this information. We were told of this today - it was on Australian Story from last Monday night Sounds excellent - they have just started or about to start phase 1 trail, so keep an eye on it Talk to your oncologist see what he/she recommends They appear to have an excellent breakthrough for the way to deliver the chemo drug to the tumour (and less side effects as less chemo is used) http://www.abc.net.au/austory/content/2011/s3331293.htm http://www.abc.net.au/austory/specials/holygrail/default.htm Company:-EnGeneIC http://www.engeneic.com/ has a link to the current trials - recommends to initially talk to Oncologist for being referred http://www.engeneic.com/news.html EnGeneIC | Working together against Cancer | Lane Cove | Sydney www.engeneic.com/Cached - Similar You +1'd this publicly. Undo EnGeneIC Pty Ltd - Targeted Cancer Therapeutics Hugs Geoff

[peanutz]

Hi Geoff, Thanks for the head up about EnGeneIC. The two scientists behind seem to be doing such a remarkable work but there is still a long way to go. I searched for the Phase 1 trial yesterday and I found a couple of links but not sure it is related to GBM. A Phase 1 Study of Epidermal Growth Factor Receptor (EGFR) Targeted, Paclitaxel Loaded EnGeneIC Delivery Vehicles (Erbitux®EDVsPac) in Patients with Advanced Solid Tumours http://www.australiancancertrials.gov.au/search-clinical-trials/search-results/clinical-trials-details.aspx?TrialID=83597&ds=1 So where are you and your partner going? Is it for holidays? From my understanding, it seems that all the patients are told there are six rounds of chemo but it ends up being extended anyway. I hope that's a good thing. Just wondering what the effect of chemo on your partner is like, full strength on it own, in comparison to the chemo-radiotherapy. My partner was told that he would have to take 2.2 times of what he's currently taking which is 160mg so that's around 350mg. My partner feels pretty tired the last couple of weeks. He tried to fight the tiredness feeling and not having a nap during the day but I told him to give in and get all the rest he needs. We hope he will feel much better once he has 4 weeks off from chemo & radiotherapy and hopefully chemo on it own is not too much for him. Cheers, Nat

[storm]

Hi Peanutz I had emailed the company yesterday. They replied today that a brain tumour trail is not presently being undertaken - but are currently trying to get finance to start a trail. Quoting from the Australian Story "For the Holy Grail" - Transcript "END CAPTIONS: Safety trials of the EDV treatment have been completed successfully on more than 20 patients according to EnGeneIC. In animal trials, brain tumours were slowed or eliminated in 10 out of 10 dogs tested. The next phase, human brain cancer clinical trials will begin soon. But Drs MacDiarmid and Brahmbhatt say further work is dependent of continued funding and there are no guarantees." Re your wondering----Lorraine was on the full strength chemo (I thought it was 320 mgs/day) she took it for 5 days, then 23 days off - it threw her energy and around some days are hard with depression but manageable (what other option is available?). She often needed an afternoon nap/sleep, mornigs and till 1 - 2 pm was the better time for her. Her speech/ability to talk can be difficult for her with some days brings frustration for not being able to communicate to find simple words there is no/little connection. She was an avid reader, now she is not able to take up a book -just magazines – Note that her reaction this all depends on where and how the tumour is within the brain so your partner may not experience the same effect. After her last MRI, the tumour was significantly increased (&/or it was activity in the brain). Her oncologist changed the chemo around so that she now takes 120mgs/day but over 21? days and 7 days off - in effect taking more of the drug but over a longer period. She gets another MRI this Sunday and sees oncologist Tuesday. She is also currently on 75mgs of the anti-depressant – I believe there is some improvement in her overall speech ability to talk - but its early days and it maybe because of the reduced amount of chemo or (very hopefully) the possible action of the anti depressant, it maybe I am being overly hopefuland pecieving things that are not happening. The anti-depressant causes dizziness (when she stands) dryness in her mouth.

[peanutz]

Hi Geoff, Just want to say thanks for all the info. you provided. I really appreciate it. We have an appointment with a medical oncologist this Wednesday. I will ask him all about different drugs and clinical trials. Hope he is quite open mind about this. Thanks again. Nat

[storm]

Hi Nat Hope all went well with oncologist Latest for us - MRI scan showed no increase but a thickening (no idea what thickening could mean) but it appears OK for us at this stage Her health and adverse effects from tumor/chemo appear stable & oncologist was happy that chemo was stopping tumor growth at present. Lorraine is at 100 mg at present with the anti depressant so 50mg to further increase(her dose (150mg) hopefully any benefits will start occurring We are travelling for the next 7 weeks So till later all the best. Regards Geoff

[postiesgirl]

Hi Geoff, Thanks for all the imformation,as I am still just starting on this long road it helps to hear other peoples versions as the Dr dont really tell you enough. We are also planning a trip, but as the Dr says no flying we are going cruising instead.Just have to try to be chemo free for the month the cruise will take.Will talk to my Oncologist about QOL quality of life, which to me is very important when you dont know how long you have.Please keep posting and good luck and happy travelling to you and Lorraine. Cheers Sue (postiesgirl)

[storm]

Hi Sue We just got back after a 22 hr flight from Rome so presently recuperating from jet lag. The trip went generally good/OK. I only got reprimanded 2-3 times in the early stages which is pretty good for a male? Well I think so Lorraine was previously on the 5 day chemo then 23? days off. After the last MRI scan the oncologist thought that she should use the 21 day treatment with a lower dosage might help reduce the return of the tumour Re our trip - Part of the problem is that chemo can cause constipation so Lorraine gets a lacitive to help However a problem that has started occurring is she needs to be within a safe radius of a toilet, (bowels can have a mind of their own), so when wanting out, to be within a 10 -15 minute radius of a known toilet is ideal (but not altogether practicable when travelling). We had a few close shaves. Also the anti-depressant she takes (here is antidote evidence that this anti-depressant may reduce brain tumours) leaves her with a very dry month at times so we travel with a bottle of water and some throat lossengers to help. Part of our travel was 12 days on a ship which was just great. When she had low energy days she did not have to get out and explore the port we were in at that time she could just lounge around. Her tumour is located over her speech area of her brain. I am not sure if its the chemo or the tumor - she has some bad days especially when tired, struggles for words and sometimes gives up in dispare. Its hard for her Another issue that I have never heard talked of in these site is flatulence -- oh to be not around a person taking chemo. Pre tumor days - she was proud of her previous achievements - I was/am somewhat conservative in that area. Now she even talks of needing to leave the room -- they are very bad Lorraine is now at the end of a 21 day period of taking the chemo. Her energy can get low in the last days and into the 7 day rest time. Overall she has been on chemo now for 7 months, is sick of it and wants a break over Xmass to be with and better experience her grandkids. Ps She goes for a MRI scan next Sunday Surgeon & Oncologist then follows. Have a great trip Sue Hugs Geoff