My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Glad to hear that Jims been given dex, that will help him agreat deal. Its very interesting about the mobile phone mass, my partner has been an essesive mobile phone user for the past 30years.
I am writing to say thank you to those who have previously written on this website - particulartly legend. Although I have found it distressing to read your story - yet it is also reassuring as well. I have a family member who is relatively young and after surgery, chemotherapy and radiotherapy is now very ill in hospital and showing all the signs that he is deteriorating quickly. He cannot walk unaided, barely talks, has difficulty taking fluids on board and although showed signs of retaining a sense of humour until recently - now seems to stare or glare at you. All these things have been shown to be a regular occurrence with GBM4. and at least I know its as usual as things can be. I am not sure when the end will come - I fear it could be relatively soon and am glad I have found this type of support - thanks for sharing
Hi trouble 29 sorry to read your story, there are lots of nice people about here who will help and advise you about this horrible situation that we are all in.
Hi Linda, sorry to hear about your partner Martin. I have been on this journey for 20 months - my wonderful mother was diagnosed in Dec 2006. My mother was given 6 weeks radiotherapy with Temodal, followed by another 6 months of Temodal. Treatment finished in Oct 07 and her tumour had reduced 50%. It showed further reduction on her 3month scan in January 08. We were so happy to hear that news that we didn't question further treatment and went away happy that her next appointment was in 3 months time. However, on 2nd June this year her scan showed massive regrowth. Unfortuately, by that time it was too late for more treatment but we have since learnt that there are people under her clinic being given Temodal on a flexible basis; some every 8-12 weeks and this can keep it at bay. We were not told this in February and only discovered it because another doctor mentioned that they can do this and was alarmed that as my mum reacted so well to the treatment it wasn't offered in January. All I would say is, there is hope to extend life and always question more treatment. You need to keep searching and reading up on what is available. I only found this site in June but if I knew in January what I know now I'm 100% sure my mum would be living with this disease rather than being sent home from hospital tomorrow in preparation for the end of her life. Ask question all the time and get as much information as you possibly can - people can live with this disease longer if the treatment is given but you do have to push for it sometimes. I truly wish you and your partner all my best wishes. I feel fortunate that we have had 20 months with my mum with only the past 3 months being evident of the disease. With the right treatment it is possible to live with it long. Best wishes x
Your story gives so much hope to us all, but its also filled with sadness, if only your mum was given more temodal her situation would probably be much better you must feel angry and frustrated. I now because of your information ask the consultant about this option, my partner has alsmost finished his first 6 week cycle of radio and temodal, we wont know if it has worked till the first scan has been done in about 1 month, we can only hope and pray, thank you very much for your support, and i hope your mum and the rest of your family are as well as can be expected, ill pray for you all.
evening to you all, am always here if you ever need any advice or any questions that i may be able to answer. i try to put on here how it was for dad and us, everyone however is different so can only tell what i have seen and know. am thinking of you all and your loved ones, forever here and in my thoughts. corina, part of "the legends gang".xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Gayle, I just want to emphasis on the extended temozoomide option. My mum had radiotherapy/Temoz for 6-weeks and that followed with a course of Temozolomide for 5 days every 28 days for 6 courses. However, this treatment is subject to the tumour shrinking and if there is signs that it is not responding they stop. My mums reaction was unusal, it reduced 75% over the year - her tumour was inoperable so the results were remarkable. However, this is where the treatment stopped and at this point is where we should of asked the question 'how do we keep it at bay'. We were just so happy to hear of the reduction we never gave the next 4-months a thought. Within 4 months it had grown back rapidly. My mum was given pcv 6-weeks ago but it was too late and this type of cemo is not preferred; even her senior consultant did not recommend it. She only had the one infusion and we stopped it. The only reason we agreed to pcv was because at that consultantion with the registra he stated that if the tumour could reduce on pcv there would be an option to have temozolomide combined with another compound on a flexible bases to keep it at bay and prolong life. It is not a tablet format but is given by a one off infusion and can be administered on a flexible basis, weekly, monthly, every 8 or 12 weeks, etc dependent on the individual patience. The Registar even commented that one of his patience had received over 50 infusions over a longer period of time and living a great quality of life. I questioned this with the hospital this week and asked why she wasn't put on that programme in February 08 when the tumour had over the year reduced 75%. I was told (by another doctor) that there is no medical evidence that it actually continues to works. Very different to what the registra was telling us 6 weeks ago hey! Some of them try and flog you off but you only have to look at the US websites of surviving people, living with their tumours on continued temozolomide. With these tumours it is not will it come back but WHEN so all I would say is that if your partner responds well to his courses of treatment and I'm sure he will, do ask about the next steps. We didn't and only found out about possible continued treatments when it was too late. Unfortunately, we have to accept that budgets are never too far away from doctors minds and treatment for this disease is expensive so you have to fight for it sometimes. Keep positive and best wishes Sharon x
Thank you very much for all that very usefull information, i am so glad that you told me because my partner only has 2 more sessions of radiotherapy left and 1 more week of temodal, he also has had a debulk operation also. Do you think i should wait untill the scan results are back before i ask about the next stage of the treatment. As for the question of budgets i think that is awful how can you put a price on someones life.
Gayle I'd eefinitely wait until the treatment is over and the scan results are back. If results are positive the doctors will not deny the next stage of treatment, 6 courses of Temozolomide every 28 days. It is really only after that course that options can get limited. This is when I wish we had done our homework and been more aware and prepared. It is hard to question doctors, they are the experts but this disease grows back so quickly you always have to be ahead of the game. x
