GBM Treatments - what to expect ($$$)

[peanutz]

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

[peanutz]

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

[exhausted]

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.

[Hopeful]

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!

[peanutz]

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. 🙂

[storm]

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

[storm]

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

[peanutz]

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,

[storm]

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

[peanutz]

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. :(