https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9023#M1427 We've decided to go with Avastin. It's quite expensive but I don't think I can live with regret. Thu, 14 Jun 2012 11:33:31 GMT peanutz 2012-06-14T11:33:31Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9020#M1424 I'd like to see what the experience people here have on using Avastin for GBM. I think we have to make a decision on the next chemo that my partner should try after the new drug he tried doesn't work. All my research seems to point towards Avastin. It's a lot of money and my partner doesn't think a few months that he might get from Avastin worth the $. The doctor said we start off by paying for one dose and see whether it works for him. If it does, then we continue on and once we hit a certain amount $20-30K, not sure, then Roche will chip in the rest providing that the drug proves working. In a way it's like gambling but if you don't try, you will never know whether it can help extending his life. I don't want to live with regret in the future, thinking what if.... Mon, 11 Jun 2012 08:14:35 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9020#M1424 peanutz 2012-06-11T08:14:35Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9021#M1425 Although I have no exp with GBM, I have had exp with another cancer and Avastin was used with Folfox, and whether it was the combo of all the chemo drugs or individual ones, it worked and the main tumour stopped growing and reduced to half size quite rapidly. The thing is, if you dont try it, you may have regrets at a later stage. What "ifs" can fill our minds. $20-30K is a small price to pay if it works. Wombat4 Tue, 12 Jun 2012 01:58:48 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9021#M1425 wombat4 2012-06-12T01:58:48Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9022#M1426 Hi Nat my man had avastin for 17 months and is currently having a rest from it. It was a miracle drug for him as he was virtually bedridden and very confused, barely able to talk before the avastin. He is still going resonably stable. The avastin was funded by Roche after 4 treatments were shown to improve things so try to fight for a better deal. We were really blessed as our hospital in Geelong funded the first 4 treatments so we have not been out of pocket. Whats happening with the trial? Hugs Terese. Thu, 14 Jun 2012 11:04:11 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9022#M1426 exhausted 2012-06-14T11:04:11Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9023#M1427 We've decided to go with Avastin. It's quite expensive but I don't think I can live with regret. Thu, 14 Jun 2012 11:33:31 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9023#M1427 peanutz 2012-06-14T11:33:31Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9024#M1428 Hi Terese, The trial seems to work with the original tumour which has EGFRvIII abnormality by reducing the size 5 weeks ago and the scan last week looks the same which I still find it positive. However, the new tumour that showed up 5 weeks ago has grown quadruple it size so it was suggested that we stopped the trial. It is possible that the new tumour has different cell types and probably does not have EGFRvIII abnormality so the drug doesn't work. Great to hear the positive side of Avastin. 17 months! WOW Our oncologists only said 'a few months' and wouldn't give us any number. We hope that the drug will work; otherwise, we probably run out of option. :-S Cheers, Nat Thu, 14 Jun 2012 11:44:15 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9024#M1428 peanutz 2012-06-14T11:44:15Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9025#M1429 Hi Nat and Terese I am a bit confused s to where your partner is with the posts dated 11/06/12 and 14/06/12? But based on your post dated thurs 14/06/2012, my partner had a similar experience, she has been on the Avastin trail with the original tumour contained, but now has a new tumour growth. She is now off the Avastin after 4 months and has started taking Carboplastin (chemo drug) 4 weeks ago. My research indicated the Avastin has a average 3.8-4.2 months effectiveness, so she gained this extra time with a reasonable quality of life. Geoff Sat, 23 Jun 2012 04:36:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9025#M1429 storm 2012-06-23T04:36:53Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9026#M1430 Nat and any others interested Just came across this site for the trial of Avastin gives some insight into the effectiveness (min 2.3 months extra time) and a side effect with possible GS tumour "(GS is a rare variant of GBM that has gliomatous and sarcomatous features, and most are primary tumors. Secondary GSs are usually diagnosed at surgery for previously resected and irradiated GBM and "have a greater propensity for extracranial metastases," Dr. Yang said. In addition, "there are some reports suggesting that the outcome of gliosarcoma is worse than glioblastoma.)" http://www.medscape.com/viewarticle/762970 There are some other related topics on GBM also on this site, so more reading some furtehr extracts from this site below of the Avastin trial "results were presented here at the 80th Annual Scientific Meeting of the American Association of Neurological Surgeons Bevacizumab for GBM Linked to More Secondary Gliosarcomas...... the incidence of secondary GS was 15.4% (6 of 39 patients), compared with 0.6% among patients who had not received it (2 of 312)...... Overall Survival Times Treatment Survival Duration After Initial Diagnosis (mo) Bevacizumab, secondary GS 16.1 No bevacizumab, secondary GS 19.2 Bevacizumab, no secondary GS 18.5 No bevacizumab, no secondary GS 13.8 Looking just at the effect of bevacizumab on survival time after initial diagnosis, Dr. Yang said patients who received the drug "had an overall survival a little over 18 months, and patients who did not receive bevacizumab had average survival of approximately 14 months" (P = .117). He concluded that "bevacizumab did not appear to be correlated significantly with overall survival." There was an initial survival advantage of receiving bevacizumab, but at about 20 months, the Kaplan-Meier survival curve fell off sharply for the bevacizumab group." You will have to join to accesss the site. Its free and mainly for medical people but allows for others (i.e. us) to join. Hugs to all for the challenges this crappy cancer inflicts on our partners, wives, friends, mothers, fathers, sons, daughters and ourselves Geoff Sat, 23 Jun 2012 08:09:18 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9026#M1430 storm 2012-06-23T08:09:18Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9027#M1431 Hi Geoff thanks for that info, interesting. Cheers Terese. Sat, 23 Jun 2012 12:26:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9027#M1431 exhausted 2012-06-23T12:26:56Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9028#M1432 Thanks for this Geoff. I read about the secondary Gliosarcoma and doesn't quite like it but I can't see we have any better option. Sat, 23 Jun 2012 23:17:16 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9028#M1432 peanutz 2012-06-23T23:17:16Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9029#M1433 Hi Terese & Nat The secondary growth with Lorraine is possibly the start of a possible GS tumour??? Lorraine has her carboplastin infusion this Tuesday hopefully we may have some contact with the oncologist (he is not booked for this round) Terese - it seems that your husband is not in the 15% that are effected by the GS tumour so that is great Hope the Avastin continous well for him and you. Hugs Nat & Terese Geoff Sun, 24 Jun 2012 01:13:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9029#M1433 storm 2012-06-24T01:13:53Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9030#M1434 Geoff, Scan in early May shows a new tumour of 7mm in size. End of May - Dennis had problem with speech. Scan in early June shows the new tumour has grown but the old tumour site is stable. Our options as the doctors presented are: - Carboplatin 10-20% chance that it will work - Avastin has higher chance but it may not work and it could mean future clinical trial may not be an option - Phase II (random) of another clinical trial (LY2157299 + Lomustine) which mean we have 50% chance of getting LY2157299 which is the new drug that they are testing We are going to have the first Avastin on 29 June. After 2 doses with 3 weeks apart, we will get a scan to see whether the drug works or not. At the moment, apart from what we all know that the tumour(s) probably keep growing, the speech is quite normal now. Mobility is good but most of the time feeling exhausted. Sun, 24 Jun 2012 01:15:15 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9030#M1434 peanutz 2012-06-24T01:15:15Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9031#M1435 Hi Nat Terese Lorraine's tumour resulted her cognitive power, speech and memory have decreased. Her mobility is declining she is getting frail wobbly on bad days, tires easily, watching to ensure she does not fall She gets highly frustrated with not communicating (and me trying to coprehend) As yet she is to start her Dec (steriods)that should reduce swelling and counter some of the adverse effects, otherwise good most of the time. See what adverse effects from the second round of the Carboplatin brings tomorrow. Hugs Geoff Mon, 25 Jun 2012 12:44:03 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9031#M1435 storm 2012-06-25T12:44:03Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9032#M1436 Hi Geoff, I hope Lorraine's second tumour is not Gliosarcoma. I don't know much about it apart from it's a rare type but treated in the same way as GBM. Well, cancer is bad, no matter what type it is. I don't know how it all works. The doctors don't seem to know much either. It's been a bit over 10 months in and Dennis can still walk, talk, do pretty much everything by himself but not good at physical work any more. His memory isn't quite good and I guess it's from the new tumour in the temporal lobe. I hope this will improve when he gets Avastin this Friday. I hope Lorraine doesn't feel too bad after Carboplatin. Our oncologist would like to add Carboplatin to the Avastin infusion but we want to wait and see whether Avastin on it own does work before he does that. Otherwise, we can't see whether Avastin actually works. Take care, Nat Tue, 26 Jun 2012 03:17:12 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9032#M1436 peanutz 2012-06-26T03:17:12Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9033#M1437 Hi Nat Terese Oncologist believes the Avastin does not necessary cause the Gliosarcoma but could be a remainder of that type of cell within the tumour (after the Avastin has attached the other cells) The cause of the Gliosarcoma is unknown Re Lorraine and the Carboplatin - her reactions to it are so not so bad (to date). A friend we made while in hospital did not tolerate the Carboplatin well, she died 4 weeks ago group. Hugs Geoff Tue, 26 Jun 2012 13:16:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9033#M1437 storm 2012-06-26T13:16:37Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9034#M1438 My sons Oncoligist told us dont bother with Avastin, it would only prolong his life 3 weeks, not sure what to believe anymore Sandra Thu, 28 Jun 2012 00:43:47 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9034#M1438 rarsie 2012-06-28T00:43:47Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9035#M1439 I am so sorry for your sons prognosis rarsie. Peanutz partner may be at different stage in his battle, and as I mentioned with my wife with using the Avastin, it reduced the tumours significantly. A different cancer, but on first dx she was stage 4 and palliative, she went on for a further 2 yrs after dx, with a good quality of life. One of the lesions was discovered at 118mm, grapefruit size, within a few months on Avastin and other drugs (chemo) it reduced to 58mm. It was wonderful to have her with me for those extra 2yrs. Its a tough call, and of course the wishes of the sufferer are foremost. god bless all Wombat4 Thu, 28 Jun 2012 01:04:54 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9035#M1439 wombat4 2012-06-28T01:04:54Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9036#M1440 That's not a good news about your friend but everyone is different. Hope for the best possible outcome! Thu, 28 Jun 2012 21:42:57 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9036#M1440 peanutz 2012-06-28T21:42:57Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9037#M1441 Sandra - I'll keep you post on how we go with Avastin. Sun, 01 Jul 2012 07:06:36 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Avastin-for-GBM-is-it-worth-the/m-p/9037#M1441 peanutz 2012-07-01T07:06:36Z