topic Re: GBM Treatments - what to expect ($$$) in Diagnosis and treatment

GBM Treatments - what to expect ($$$)

peanutz — Tue, 16 Aug 2011 23:00:13 GMT

Hi there, My partner was diagnosed with GBM IV last Thursday. We were told that he would require radio therapy and chemotherapy. We have a meeting with a radio oncologist this afternoon, not sure what to expect apart from a big bill perhaps. We just found out that the hospital, Monash Medical Centre - Clayton, made an appoint for him with one of the doctors at Monash Neurology which is a private practice at this hospital. Is this a normal thing? I try not to be worried to much about how much this is going to effect us financially but still would love to know what to expect. Thanks Nat

Re: GBM Treatments - what to expect ($$$)

peanutz — Thu, 18 Aug 2011 05:24:20 GMT

OK, I already know an answer for this. Just called up the clinic and asked a receptionist. It's all bulk bill so we didn't have to pay a cent. N

Re: GBM Treatments - what to expect ($$$)

exhausted — Thu, 18 Aug 2011 14:33:19 GMT

Hi Peanutz Sorry to have to welcome you to our club but since you have no choice just know that you are not alone and there is lots of support available and this site is great to ask questions and vent when you need to. My husband also has a GBM and we were also freaked in the beginning when first refered to a private clinic but we ended up having treatment in Geelong, all bulk billed thank goodness. Will be thinking of you as you start this journey. Cheers Terese.

Re: GBM Treatments - what to expect ($$$)

Hopeful — Wed, 24 Aug 2011 02:26:30 GMT

Hi Peanutz, My husband was diagnosed with GBM 2 years ago so I am very familiar with most of the costs involved. You will be happy to hear that there were not many times that we were out of pocket. We did not have any type of private health cover. One of the big positives is that Australia is very lucky to have the chemo (Temadol) subsidised so it is very little cost to you but it is actually worth thousands of dollars for each treatment. We moved to NZ during my husbands illness and it was not subsidised in NZ so it really made me appreciate the australian health system. If you have any other questions about anything to do with GBM then feel free to message me as I have become quite the expert!

Re: GBM Treatments - what to expect ($$$)

peanutz — Wed, 24 Aug 2011 06:38:38 GMT

Hi Hopeful, Thank you for your message. Sorry to hear that your husband also had GBM. I wish the doctor misdiagnosed my partner but I guess the pathology result can't lie, can it? I will probably ask more questions next week when the chemo-radiotherapy start. Hope it goes well. Today I called him but he didn't answer and got me worried. Later he called me back and told me that he went out for a walk/run around the area. 🙂

Re: GBM Treatments - what to expect ($$$)

storm — Sat, 10 Sep 2011 07:39:55 GMT

I have recently heard of the antidepresant drug Clomipramine being used to treat brian tumours. My understanding (with what I have come across on internet) is there is hope for treatment? Some extracts from the internet- "[PDF] The role of tricyclic drugs in selective triggering of mitochondrially-mediated apoptosis in neoplastic glia: a therapeutic option in malignant glioma?[PDF] from onko-i.siGJ Pilkington, J Akinwunmi… - Radiol, 2006 - onko-i.si" "Clomipramine: A Breakthrough For Brain Tumours? Originally published in May 2003 icon, this article looks at the potential of using chlomipramine, a tricyclic drug already widely available, to treat brain tumours or brain cancer. Since it was written we have covered research in Cancer Watch which concluded that using chlomipramine with the drug Temozolomide could improve the performance of Temozolomide and enhance survival times." "In more than 30 years laboratory-based research into the biological nature of brain tumours, few developments have excited me more than the seemingly bizarre finding that an antidepressant drug may provide an effective way to combat this resistant group of cancers." "The clinical trial - supported by the Samantha Dickson Research Trust - will begin in June at King´s College and St Thomas´ Hospitals for patients between 16 and 65 years of age with newly diagnosed and histologically verified anaplastic astrocytoma or glioblastoma multiforme. It is hoped that the trial will be extended to other centres in the UK and that if further funding can be provided with support from paediatric oncologists it may be possible to extend the trial to children suffering from brain stem glioma." A BBC 4 programme explores some history http://www.bbc.co.uk/iplayer/episode/b013xsm1/Treating_Tumours_Old_Drug_New_Tricks/ There is a blog by a person who has elected to use the drug through his GP - he is in early stages of chemo onefootingrave.blogspot.com/ - Cached Anyone else have experience or insight? Hoping to explore with Oncologist on Tuesday & Surgeon Friday my best wishes for all Geoff

Re: GBM Treatments - what to expect ($$$)

storm — Sat, 10 Sep 2011 13:26:16 GMT

Peanutz and hi to Hopeful & Exhausted Sorry that I dropped in with the above (previous) comments. I did not acknowledge you appropriately, and your partner is about to start the chemo-radiotherapy next week. Otherwise welcome to the land of the unwanted GBM (Great bloody monster -insert your prefered words) The tumour takes and changes a lot from your life including money. Future hopes and dreams are changed/made uncertain or lost as you walk and go through the differnt stages. The finding out - surgery, radiation, chemo (and then,the worst of all, the RPA hospital food - that in itself should be a huge incentive to politely ask the unwanted GBM guest to leave its host - shame the GBM does not have a direct link to the injestion of food - a potential wonder drug) Ps I was not the patient, but just one mouth full of the rejected hospital food from my partner, and during a shameful stage of overt hunger on my behalf left this heightened and lingering adversion.....hoping never ever to go back. But really I want for her (my partner)and myself not needing to go back, needing the hospital and its support network. You and your partner having to go through with this experience its unfair. You will come to meet some remarkable, caring and unique people. Hugs & love Geoff

Re: GBM Treatments - what to expect ($$$)

peanutz — Mon, 12 Sep 2011 04:46:00 GMT

Hi Geoff, Thanks for the info. about Clomipramine. I will check it out. The problem with these promising drugs is getting a doctor to prescribe it. So far, all the doctors I contacted told my partner to follow their 'gold' standard treatment. We were even prepare to pay for Avastin if it's going to be good for him but obviously there is no benefit for a person with newly diagnosed GBM. So how's your partner doing? When was she diagnosed? Cheers,

Re: GBM Treatments - what to expect ($$$)

storm — Fri, 16 Sep 2011 09:45:22 GMT

Hi Peanutz The chlomipramine is an anti depressant drug that (from my understanding of the article) can be used in conjunction with the chemo thus further controlling/reducing the tumour. Of some 250 people that have been taking the drug some appear to be getting good results with increased lifespan. There is a trial that has started in England in June (as stated in the article but I have not found any further refernces as to how it might be progressing and what exactly the trials is investigating, trial has been proposed for some time but had lack of funding-drug companies not interested as it is already on market for some time - there is not much in it for them) Saw our register (Oncologist offsider)on Tuesday - he was not willing to give an opinion but wanted the Oncologist to review the article when he comes back on leave Gave the article to my partners GP - whom was supportive of trying the drug, gave us a prescription, and now partner has just started taking the drug. If you feel there maybe benefit and want to proceed take a copy of the article to your oncologist and GP. Partner had operation on 3 Febuary 2011, has had radiation and approximately 4 months into chemo. Last MRI (2 months ago) showed significant activity in tne tumour site in her brain - whether it is return of the tumour or result of radiation chemo or combination of all three is not known, but after seeing surgeon today he was happy with the result todate next MRI sould be indicative of whether it is growing. He stated that options are - further surgery and/or different forms of chemo (not quiet sure what other forms of chemo infer) Best wishes on your journey Geoff

Re: GBM Treatments - what to expect ($$$)

peanutz — Wed, 28 Sep 2011 00:31:23 GMT

Hi Geoff, Thanks for the info. I feel a bit frustrated at the moment. Not sure what will happen next now that my partner is in his 5th week of radio-therapy. It is like there is some sort of treatment plan organised for him but we do not know the person who organised it. On the day he left the hospital after the surgery, we met a doctor (not the neurosurgeon), an oncology nurse, and a social worker who delivered the bad news to us. After that, we received a letter for 1st appointment at their Neuro clinic which we found out later that it's with his radio oncologist to talk about chemo-radiotherapy. When he's into his 2nd week of radio therapy, we received another letter for his 2nd appointment at the Neuro clinic again and we found out on the day that it's for his post operation check up - 4th week or chemo-radiotherapy. At this 2nd appointment, we were told that there will be another appointment (3rd one) with his neuro oncologist a week after the radio therapy. The appointment letter has not arrived yet. I guess this person would talk about chemotherapy. Why can't we just get a plan laid out or be able to talk to someone and get an idea of what will happen next rather than waiting step by step? We don't even know when his next scan will be and how often he will get to do it. :(

Re: GBM Treatments - what to expect ($$$)

storm — Wed, 28 Sep 2011 13:32:57 GMT

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

Re: GBM Treatments - what to expect ($$$)

storm — Wed, 28 Sep 2011 13:33:05 GMT

Re: GBM Treatments - what to expect ($$$)

peanutz — Tue, 04 Oct 2011 02:51:13 GMT

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

Re: GBM Treatments - what to expect ($$$)

storm — Tue, 04 Oct 2011 13:14:18 GMT

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

Re: GBM Treatments - what to expect ($$$)

peanutz — Thu, 06 Oct 2011 02:53:45 GMT

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

Re: GBM Treatments - what to expect ($$$)

storm — Thu, 06 Oct 2011 10:03:30 GMT

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.

Re: GBM Treatments - what to expect ($$$)

peanutz — Tue, 11 Oct 2011 02:16:49 GMT

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

Re: GBM Treatments - what to expect ($$$)

storm — Wed, 12 Oct 2011 21:52:54 GMT

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

Re: GBM Treatments - what to expect ($$$)

postiesgirl — Fri, 21 Oct 2011 12:11:21 GMT

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)

Re: GBM Treatments - what to expect ($$$)

storm — Tue, 29 Nov 2011 04:04:53 GMT

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