GBM Treatments - what to expect ($$$)
Wed, 17/08/2011 - 09:00
Hi there,
My partner was diagnosed with GBM IV last Thursday. We were told that he would require radio therapy and chemotherapy. We have a meeting with a radio oncologist this afternoon, not sure what to expect apart from a big bill perhaps. We just found out that the hospital, Monash Medical Centre - Clayton, made an appoint for him with one of the doctors at Monash Neurology which is a private practice at this hospital. Is this a normal thing? I try not to be worried to much about how much this is going to effect us financially but still would love to know what to expect.
Thanks
Nat
Fri, 19/08/2011 - 00:33
#2
Re: GBM Treatments - what to expect ($$$)
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.
Wed, 24/08/2011 - 12:26
#3
Re: GBM Treatments - what to expect ($$$)
Hi Peanutz,
My husband was diagnosed with GBM 2 years ago so I am very familiar with most of the costs involved. You will be happy to hear that there were not many times that we were out of pocket. We did not have any type of private health cover. One of the big positives is that Australia is very lucky to have the chemo (Temadol) subsidised so it is very little cost to you but it is actually worth thousands of dollars for each treatment. We moved to NZ during my husbands illness and it was not subsidised in NZ so it really made me appreciate the australian health system.
If you have any other questions about anything to do with GBM then feel free to message me as I have become quite the expert!
Wed, 24/08/2011 - 16:38
#4
Re: GBM Treatments - what to expect ($$$)
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. 
Sat, 10/09/2011 - 17:39
#5
Re: GBM Treatments - what to expect ($$$)
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_...
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
Sat, 10/09/2011 - 23:26
#6
Re: GBM Treatments - what to expect ($$$)
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
Mon, 12/09/2011 - 14:46
#7
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Thanks for the info. about Clomipramine. I will check it out. The problem with these promising drugs is getting a doctor to prescribe it. So far, all the doctors I contacted told my partner to follow their 'gold' standard treatment. We were even prepare to pay for Avastin if it's going to be good for him but obviously there is no benefit for a person with newly diagnosed GBM.
So how's your partner doing? When was she diagnosed?
Cheers,
Fri, 16/09/2011 - 19:45
#8
Re: GBM Treatments - what to expect ($$$)
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
Wed, 28/09/2011 - 10:31
#9
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Thanks for the info. I feel a bit frustrated at the moment. Not sure what will happen next now that my partner is in his 5th week of radio-therapy. It is like there is some sort of treatment plan organised for him but we do not know the person who organised it.
On the day he left the hospital after the surgery, we met a doctor (not the neurosurgeon), an oncology nurse, and a social worker who delivered the bad news to us. After that, we received a letter for 1st appointment at their Neuro clinic which we found out later that it's with his radio oncologist to talk about chemo-radiotherapy.
When he's into his 2nd week of radio therapy, we received another letter for his 2nd appointment at the Neuro clinic again and we found out on the day that it's for his post operation check up - 4th week or chemo-radiotherapy. At this 2nd appointment, we were told that there will be another appointment (3rd one) with his neuro oncologist a week after the radio therapy. The appointment letter has not arrived yet. I guess this person would talk about chemotherapy.
Why can't we just get a plan laid out or be able to talk to someone and get an idea of what will happen next rather than waiting step by step? We don't even know when his next scan will be and how often he will get to do it.
Wed, 28/09/2011 - 23:32
#10
Re: GBM Treatments - what to expect ($$$)
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
Wed, 28/09/2011 - 23:33
#11
Re: GBM Treatments - what to expect ($$$)
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
Tue, 04/10/2011 - 12:51
#12
Re: GBM Treatments - what to expect ($$$)
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
Tue, 04/10/2011 - 23:14
#13
Re: GBM Treatments - what to expect ($$$)
Hi Peanutz
From our experience your partner sounds typical with the process of the radiation and chemo effects They do say that exercise is good (I would assume to be done in moderation)
Our experience is there is no travel insurance for my partner (for anything that is connected with her tumour) I have no problem though.
Just came across this information. We were told of this today - it was on Australian Story from last Monday night
Sounds excellent - they have just started or about to start phase 1 trail, so keep an eye on it Talk to your oncologist see what he/she recommends
They appear to have an excellent breakthrough for the way to deliver the chemo drug to the tumour (and less side effects as less chemo is used)
http://www.abc.net.au/austory/content/2011/s3331293.htm
http://www.abc.net.au/austory/specials/holygrail/default.htm
Company:-EnGeneIC
http://www.engeneic.com/ has a link to the current trials - recommends to initially talk to Oncologist for being referred
http://www.engeneic.com/news.html
EnGeneIC | Working together against Cancer | Lane Cove | Sydney
www.engeneic.com/Cached - Similar
You +1'd this publicly. Undo
EnGeneIC Pty Ltd - Targeted Cancer Therapeutics
Hugs
Geoff
Thu, 06/10/2011 - 12:53
#14
Re: GBM Treatments - what to expect ($$$)
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-r...
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
Thu, 06/10/2011 - 20:03
#15
Re: GBM Treatments - what to expect ($$$)
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.
Tue, 11/10/2011 - 12:16
#16
Re: GBM Treatments - what to expect ($$$)
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
Thu, 13/10/2011 - 07:52
#17
Re: GBM Treatments - what to expect ($$$)
Hi Nat
Hope all went well with oncologist
Latest for us - MRI scan showed no increase but a thickening (no idea what thickening could mean) but it appears OK for us at this stage Her health and adverse effects from tumor/chemo appear stable & oncologist was happy that chemo was stopping tumor growth at present. Lorraine is at 100 mg at present with the anti depressant so 50mg to further increase(her dose (150mg) hopefully any benefits will start occurring
We are travelling for the next 7 weeks So till later all the best.
Regards
Geoff
Fri, 21/10/2011 - 22:11
#18
Re: GBM Treatments - what to expect ($$$)
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)
Tue, 29/11/2011 - 14:04
#19
Re: GBM Treatments - what to expect ($$$)
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
Tue, 29/11/2011 - 15:54
#20
Re: GBM Treatments - what to expect ($$$)
Glad to hear you had a great trip Geoff. I'm still up in the air with our trip to Europe next year. We already got tickets for the end of May which would be around 10 months after the operation. Your report lifts up my spirit but it's still daunting to take this trip. The airlines rang and left a message the other day to ask what we want to do. You didn't have a stopover to break a trip from Rome at all, did you?
While you went to Europe, we did a small trip to Thailand for a week to see how Dennis coped with flying and all. He did remarkably well but a couple of days after the trip he got really sick from brain swollen He supposed to take 4mg a day but took only 2mg so he ended up having to take 16mg after he got sick and now down to 8mg. It seems to make him craves for sugar a lot and put on 4-5kgs in 2 weeks! His MRI scan didn't look real good either. The oncologist believes it's because he didn't have enough Dex during his time off from radio therapy and what we see could still be the effect from the therapy. How often does Lorraine get to do MRI scan? Our oncologist said the scan was not necessary unless he's not doing well and perhaps every three month would be max. We want to be able to do the scan every couple of months as I heard the tumour can grow incredibly fast.
Hope all goes well with the scan next Sunday!
Cheers!
Wed, 30/11/2011 - 13:17
#21
Re: GBM Treatments - what to expect ($$$)
Hi Nat, Sue and all others on this journey
In reply to Peanuzs text above - we had a change of plane stop over bothways was at Bangkok for a few hours. It would be good to spend a few days/weekthere as a break instead of coping with 22-24 hour long flights and jetlag.Jetlag appears to be worse when coming back to Australia So if you can and can afford it and like tospend time in another country, break the journey.
We spent 12 days aboard a ship going from Istanbul to Venice with 6stops/cities to explore while the ship was docked. So that is a good way oftiming for the days when the chemo makes it really hard to get out of bed -that is you don’t have to participate in the onshore expeditions. Get to knowhow your partner reacts when his bad days are/likely to be - plan around thosedays
Be aware that insurance will not include for pre-existingconditions so if he gets sick over thereand is related to the brain tumour then it would be at your own expense for anyhospitalisation and new plane tickets if you come back. I never thought that wewould have trouble along this line, but while on the ship one of the crew had a heart attack off Croatia Ahelicopter was dispatched to hover over the ship during a blustery night andthen let 2 -3 crew down onto ship to then evacuate the crew member. If such ahappening occurred with ourselves I could perceive an extremely expensive bill,so there are risks monetary wise.
I found the insurance offered by the travel agent was expensive. I did alittle research and found that Medicare was much cheaper (by half) and had betteroptions/payments if things go wrong in other ways (we got pickpocketed inMadrid)
Re his scan - the Oncologist said the same with Lorraine's scan that residualactivity maybe there from the chemo/radiation but unlikely as hers was sometimeafter the operation and radiation treatment.
Lorraine's scans were originally programmed for 3 months apart. The MRIscan previous to the last one showed a significant increase and he wanted ascan before we went and he changed her medication to a 21 day on 7 days off,instead of the 5 day medication. The MRI scan 7 weeks ago showed no increase buta thickening (?) The oncologist wanted anotherMRI just after we got back (I think there is possibility of anotheroperation should the tumour have grown - option the surgeon suggested 7 weeksago)
Re Dennis and sugar - Lorraine's can be quiet picky with her food nowwith chemo and can tend to not eat enough. She has always been cautious withfood (a delicate stomach) so maybe with pre-existing food habits likes/dislikesgets magnified ?
Hugs
Geoff
Thu, 01/12/2011 - 18:33
#22
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
We are now booked in on a round Australia cruise starting in March.
I have just finished all the Radiation and the first round of chemo. The next lot of Chemo will start end of december. I can relate to both of Lorraines problems of constipation which we seem to have well under control now with coloxel & senna tablets every day and also the flatulence which nobody else has mentioned in other posts but I am finding can be a problem.Going for walks can be a help and gets you out of the closed in enviroment.Due for the next MRI just before Christmas so wont know whats happenning till then although the Dr says this one wont tell him much of what is going on as everything has to settle down after the radiation therepy, so the next on will tell us more. I find out more imformation from the forums than I get from any of the Drs!
I hope everything goes well for you.
Cheers & hugs
Sue
Thu, 08/12/2011 - 20:21
#23
Re: GBM Treatments - what to expect ($$$)
Hi Sue and Nat
Had MRI scan then been to surgeon & oncologist. Surgeon was reasonably happy with the tumour, thought about the same size and had not spread to other parts of brain - so no need for operation (as yet).
Then saw oncologist he said tumour had grown by 10-15% from 38mm to 42 mm (????????). He thought the present drug was not working He suggested going onto a trail with:-
Bevacizumab (trade name Avastin - a drug that blocks angiogenesis, the growth of new blood vessels; and
Carboplatin (chemotherapy drug)
or just Bevacizumab
Note a computer makes a randon selection of who goes on what combination. Subject to some further testing, the trail for Lorraine should start in mid January
Lorraine is fed up with taking the chemo and is empathic that she has a month off taking chemo. So Xmass will be chemo free for some respite.
She is a highly intelligent woman. Her tumour is located over & presses on her speech area of her brain. Then combined with the chemo, she looses on communication - and can get highly frustrating for her she can’t read and talk with people - life gets boring. Looking at talking books for an alternative
Sue I note your comments:-
"Going for walks can be a help and gets you out of the closed in enviroment" Not sure where you live but I am in Forster so please make an announcement if you ever pass through this area - I shall take appropriate evasive action of your walks (just in case this is sensitive for you, this is meant as a gentle pull of your leg and hopefully some release of the tedium of chemo and its life sentence that just hangs; never ever meant as offensive to you or Lorraine)
the boat should be good for taking walks - if enough time you can get to the downwind most location on the boat on let fly - the noise is still a problem When you go by Forster I will know and wave a hearty hello
Nat if still going to Europe consider that when coming home that it does not tie into when he comes off the chemo (or any usual low period/cycle). Lorraine had difficulty recuperating from this combination (come home Saturday night, she came off chemo on the following Tuesday so a day or so before and some days after was a "chemo" low period for her and that coincided with the jet lag)
Wed, 14/12/2011 - 11:41
#24
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Thanks for the advice. How does Lorraine doing? Has she started on the Avastin yet? I heard it was a pretty good drug. I looked into it not long after the diagnose. However, I was advised to wait for the recurrent (if it happens) and then get Dennis on clinical trial as there is no significant benefit for newly diagnosed. It is also very expensive.
We have a meeting with oncologist this evening. Hope he will give Dennis another scan soon as his right arm and three fingers (middle - little) have pins & needles the last couple of weeks and the advice (over the phone) he got is increasing the dosage of Dex (8mg to 12mg and now 16mg) which doesn't seem to help. There are so many bad side effects of Dex. He craves sugar badly but that seems to be a bit better now. He can't sleep as well, only 2.5-4 hours a night these days. Fluid retention, pimples on his body, energy level playing up. His brain and his thinking are still good though.
Hope we get something good out of the meeting this evening!
If I haven't had a chance to drop in here before Christmas, I wish everyone a Merry Christmas and Happy New Year!
Take care,
Nat
Sat, 24/12/2011 - 08:10
#25
Re: GBM Treatments - what to expect ($$$)
Hi Nat and Sue
Nat - How did your meeting go with the oncologist Denis travelling OK?
Sue that flatulence in control (hugs- I have the male sense of stupidity in this area) The MRI scan go OK? we had the same response from the Oncologist I get the feeling that it is a monitoring the tumour for if and when it starts growing
The round Australia trip should be great
Lorraine should start Avastin mid January. There are a few tests she will need to do to ensure that she would be OK from the possible side effects. While the drug is free on the trail, overall it will be expensive we will have to travel to Sydney every 2 weeks find accomodation/food
She has been on chemo now for 7 months wants a month break for xmass. So far 2-3 weeks off it (chemo) but still taking the Clomipramine (Anafranil) (antedopal evidence that it helps reduce brain tumours)she has very low energy hard to entice her for a gentle walk so now reduced the dosage to 125mg. Her eneregy is better. She experiences boredom - her speech is effected and she finds its difficult to talk/ find words I have a mild form of dyslexia so between us it would be a laugh if was not so serious Often gets frustrated and stops trying - its isolating even for her with me
Been told of an alternate/natural therapy - Flax seed oil some research shows it maybe interesting. Heard of any other avenues through this journey?
Lorraine wss not interested we tend to be scaptical of alternates though there maybe some benefits.
Warm wishes for christmas and the new year to you both and all others on this site
Geoff
Fri, 06/01/2012 - 19:08
#26
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Hope you had a good christmas & new Year.We are off back to Perth next week for the next round of MRI and Drs appointments,so maybe know more then, I am feeling too well for there to be too much problems I think ,at least I hope so.Still sleep lots, I find what ever I do I need to allow the same amount of time for recovery after.61 days till we go cruising! Bring it on!
Bst wishes to you both and hope this year is a good one for all of us on this forum.
Cheers and hugs
Sue
Wed, 11/01/2012 - 10:38
#27
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Last meeting with the oncologist before Christmas was OK. Dennis seems to develop Carpal Tunnel syndrome in his right arm but his GP asked him to talk to the oncologist instead. The oncologist wants to see whether it's from the tumour or not so he ordered an MRI which we will see the scan this evening. We are quite nervous at the moment. The scan in early November wasn't good and the oncologist thought it might be the result from the radiotherapy as the scan was done only a month after the therapy. This last scan will give us some idea how he goes. Hopefully, he will decrease the Dex. Dennis puts on 10kgs in the last 8 weeks and his face starts to get a bit round from the Dex I guess it can be worse than this.
Seeing you mentioned about Flax seed oil, I read from some where that Borage seed oil is better. It is probably from Ben William's book or article. Dennis is a big believer in supplements so he follows Ben's recommendation on the supplements e.g. Borage seed oil, mushroom extract (PSK), green tea extract, etc.
Hope Lorraine travels along well with the Avastin.
Take care,
Nat
Tue, 14/02/2012 - 19:09
#28
Re: GBM Treatments - what to expect ($$$)
Nat & Sue I have been a bit reclusive seem to be dropping out of socialising, but of late putting some effort in. A friend I had made through this site appears to have died - he had lung cancer I dont have his home email so there is no way of knowing he was getting very sick and has not posted. Sue getting closer to your cruise Nat I hope you are OK & Dennis's scan has improved since November. Had no news to report as Lorraine was off the chemo for 2 months then had a MRI a month ago - that report was her tumour had slightly increased something like 37x27x?? mm (I'm a bit perplexed as the previous December report stated it had increased from 37 mm to 41mm Oncoligist said that it was measured in a different axis - so I am unsure exactly what it is doing) Her veins have been difficult to extract blood from so they decided 4 weeks ago to inserted a port in her higher chest area for needle access (minor operation under a local) This has to be done at least 2 weks before Avastin(Bevacizumab)trial as it causes slow or incomplete healing of wounds etc So today she had the second dose (done every 2 weeks)first dose she was low energy for 4-5 days then some improvement overall her energy is fair she needs rest/sleep in mid afternoons speech is not good and struggles to communicate frustration ebbs and flows. We have little hope - its a slowish decline The best thing about this is she is not having the chemo drug with its side effects. This Avastin so far has less ill effects. I am not having a good day Hugs Nat & Sue Happish Valentine Day Geoff Ps yet to check out the Borage seed oil - there tends to be a few alteratives out there
Sun, 26/02/2012 - 15:40
#29
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Sorry to hear about your friend. I'm not having a good time myself lately. Dennis seems to be tired and sleep/stay in bed most of the time. He isn't a good patient either. He developed rash on his body about 10 days ago. I asked his oncologist and he ruled out chemo caused the problem and recommended him to see his GP. Of course, being stubborn as he is, he isn't going. I'm just so angry and frustrated with him at the moment. This morning he vomited and the oncologist said I had to take him to the hospital if he vomited as it could mean brain swelling. Again, he refused to go as he hates waiting for hours at the hospital like the last time we were at the emergency for 7 hours before he was admitted and diagnosed with GBM. He's now sleeping it off. I have no idea how sleep can help. I have no idea what to do.
Mon, 27/02/2012 - 18:33
#30
Re: GBM Treatments - what to expect ($$$)
Hi Nat Yes Dennis is a problem. His stubbonness is bringing high frustrations for you. When are you due for the next meeting with oncolgist? Cant change him so please look after yourself (time out exercise what ever is best for you) Nat you are a good person doing the best you can with a presently stubbon obstical. Ps I am also guessing that he is scared of confronting further bad diagnoses and it is such a crappy disease Warmist Hugs Nat Geoff
Thu, 08/03/2012 - 12:07
#31
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Bad news, the tumour grows back. The NO gave quite a depressing prognosis. Not sure what to do now.
Thu, 08/03/2012 - 21:19
#32
Re: GBM Treatments - what to expect ($$$)
Oh f_ ck Nat Oh bloody f_ck. Its a sh_t of a cancer with little to look forward to The anger with nothing to strike against, the loss of hope as you get thrown another thorn After Lorraine gets back similar results of the tumour, its consequences becomes real again, my trying to come to terms as its "reality" comes in to roost. Feeling of hopelessness as all I do is witness as my partner slowly leaving me, my anxiety my grief. the alonenes and isolation. Well they are a part of my experience Hugs for you Nat Big hugs for you
Sat, 10/03/2012 - 12:26
#33
Re: GBM Treatments - what to expect ($$$)
Hi Geoff,
Thanks for the big hugs, just what I need! I'm feeling better now, engaging myself with all the reading about treatment options for recurrent GBM. I don't expect to discover another Lorenzo's oil but at least I will have something to refer to when we discuss with the doctor. We are getting a 2nd opinion next week. I don't like the fact that the current NO doesn't seem to provide a few options but only one that I happen to find his name listed on a published research paper. I don't know if every NO is like this but I will keep looking for an open minded one. We got nothing to lose!
Take care,
Nat
Wed, 28/03/2012 - 17:52
#34
Re: GBM Treatments - what to expect ($$$)
Hi Nat
Tried to reply 2.5 weeks ago but each time I tried to send I lost the content.
Since we have moved to a new address and in the process found that we were off the internet and had to reapply for the new address (it takes 7-10 working days for the new connection. So appolgies for the long delay.
Lorraine had the MRI and then saw the oncologist yesterday with news that the tumour had less mass and swelling. The amount of lessening in size was not measured, the end description is that it is at present stable. The news is good but leaves me in suspension I was expecting some worsening
She is a bit shaky when negotiating stairs and crossing the road and has been disorientated in the middle of the night when going to toilet - (and ended up falling, very luckily not hitting her head. So now we use a night light) I assume that it is a part of the side effects of the drug Avastin (Bevacizumab)
However she is glad to be taking only the Avastin and not chemo drug with the less side effects.
How did your 2nd opinion go.
Hope there is some good stuff out there it all seems like a ride to nowhere with pauses
Hugs again
Geoff
Sat, 10/03/2012 - 16:38
#35
Re: GBM Treatments - what to expect ($$$)
Hello All,
My husband was diagnosed with GBM in June 2011, having surgery, radiation and chemo.
Currently coming up to cycle 7 of stage two of chemo.
We had a MRI last week and wait with baited breath for Tuesday for the results, as the previous MRI in January indicated a new growth (but specialist disagreed to whether it is a new tumour or a side effect of radiation) at the time the growth was 1.2cm in size.
I am hoping that all is well with you and family at this time, along with sending my thoughts to you all.
It is definitly a kick when receiving the diagnoses of GBM. With my husband there was no warning, just one day woke up with stroke like sysptoms and was sent to hospital from work, there they had fun with bringing down blood pressure (as it was through the roof), and a CT scan with contrast showed that there were three cysts (one of which started to bleed into brain), and then a plane flight to PA in Bris for further investigation.
My husband being asked what line of work and then being told that work is now out of the question.
It has definitly been an interesting time, learning so much about the body, health, and cancer.
Wed, 28/03/2012 - 18:17
#36
Re: GBM Treatments - what to expect ($$$)
Hi Groenevelt68
yeah it throws everthing out of whack
Loss of work income lisence independence.
and you as a carer your life thrown upside down.
Geoff
Fri, 30/03/2012 - 17:57
#37
Re: GBM Treatments - what to expect ($$$)
Geoff - glad to hear Lorraine is doing well. Dennis is actually doing alright at the moment apart from feeling tired. I guess the effects of chemo is still there; however, the fact that he hasn't had anything but Dex for nearly 2 months probably helps.
Second opinion didn't tell me anything new. Australian doctors just follow standard protocols. They aren't willing to try something different like in the USA unless it's part of clinical trials. Anyway, we decide to go with a clinical trial that tests AMG 595 on human for the first time. It sounds scary but Dennis like the idea of it as other options aren't that promising anyway. He gave approval for his tumour tissue to be tested and it's positive for having the type of gene that they look for and the drug should work. We were told only 30% of GBM patients has this type of gene which shows an abnormality in the tumour cells. So he's likely to be able to participate in this trial. So far, they only have 2 persons enrolled in Australia and none in the States. There are some other tests such as blood test, urine test, and ECG check. MRI scan has been organised for next Tuesday so it would be interesting to see how much the tumour has grown. Will report back on how he goes with all this.
Fri, 30/03/2012 - 18:13
#38
Re: GBM Treatments - what to expect ($$$)
Groenevelt68 - 7 rounds of chemo mmmm I'm sort of jealous. How silly is that!? Sometimes I wish I could wake up from this nightmare. It's bad enough having to come across with GBM, worse with the recurrent one it seems. Basically, doctors told us to forget about being one of those 5-7 yr survivors. To get 12 months from now would be incredible. It's so hard to believe though. My partner still makes me breakfast whenever he can. He sometimes makes me dinner as well. He walked for 5 kms once last week and once this week but pretty tired afterwards. I can't see how he can be gone in 12 months. A doctor we saw yesterday told us that things can go bad in a matter of weeks. *sigh*
Sat, 07/04/2012 - 10:45
#39
Re: GBM Treatments - what to expect ($$$)
Well we never got to do the 7th chemo session as the MRI in March indicated that the 1.2cm tumour is now over 3cm and we were sent to PA to see specialist. After three weeeks of phone tag and running around we found out that surgery will not be done. The new tumour is sitting in the left temporal lobe in the area of communication.
We will be doning another round of radiation to start later this month and will see the chemotherapist to see what is on offer there.
It is likely that we also have less than 12 months.
Sat, 07/04/2012 - 10:46
#40
Re: GBM Treatments - what to expect ($$$)
Well we never got to do the 7th chemo session as the MRI in March indicated that the 1.2cm tumour is now over 3cm and we were sent to PA to see specialist. After three weeeks of phone tag and running around we found out that surgery will not be done. The new tumour is sitting in the left temporal lobe in the area of communication.
We will be doning another round of radiation to start later this month and will see the chemotherapist to see what is on offer there.
It is likely that we also have less than 12 months.
Sat, 07/04/2012 - 11:07
#41
Re: GBM Treatments - what to expect ($$$)
Hi Groenevelt68,
I didn't know radiotherapy is an option after you had 6 weeks of therapy. Your husband might have had lower dose of it so that can be an option. We were told the same thing about surgery that they don't recommend to have the second one within a year.
There is also another clinical trial, not the AMG 595 that my partner is getting this Tuesday, which will start to recruit in late April or May. It is a randomized phase II study (there are 3 arms in the study), investigating a new drug called LY2157299 with another drug used more commonly called lomustine. You may want to explore this option. We don't want to wait for this one as everyday is so precious. I find it's hard to just sit tight and do nothing but wait. It took us 5 weeks from getting the bad news (7 March), seek 2nd opinion, went through screening phase, to getting a treatment from this clinical trial (10 April).
Take care
Sat, 07/04/2012 - 11:34
#42
Re: GBM Treatments - what to expect ($$$)
Hey Peanutz,
After we had the tumour removed last year we had 6 weeks of radiation and 6 weeks of chemo (as a block) at the same time, then the chemo went to monthly sessions.
We were told at the time that it is not normal to offer radiation for a second time in our case if another tumour came radiation would be considered.
So now we are going to have another round of radiation for 6 weeks and it will be same dose or higher.
We thought that since there is a chemo appointment sitting there we would attend and see what they can offer, whether we have the combined radiation and chemo, just radiation to start and do chemo later or finally no chemo. So now we sit and wait.
Sat, 07/04/2012 - 21:58
#43
Re: GBM Treatments - what to expect ($$$)
Hi Groenevelt68
The time of waiting and getting whatever news is really difficult. Then having to "deal" with the news
Oh shit this is a such crapy path
My thoughts and best of wishes to you
Hugs
Geoff
Sun, 08/04/2012 - 11:48
#44
Re: GBM Treatments - what to expect ($$$)
At least we finally got the information we were after, it may not have been the greatest but at least we can work with it. I do not like being in the dark as that wastes time.
We will go home for a bit of r&r before coming back for treatment.
Wishing all a Happy Easter.
Sun, 08/04/2012 - 11:48
#45
Re: GBM Treatments - what to expect ($$$)
At least we finally got the information we were after, it may not have been the greatest but at least we can work with it. I do not like being in the dark as that wastes time.
We will go home for a bit of r&r before coming back for treatment.
Wishing all a Happy Easter.
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