It sounds like we have hd a very similar experience up until now. I finished a six week course of chemo and radiotherapy last Friday. The chemo did not really appear to have any side affects for me at all. The radiotherapy made half my hair fall out, which apparently will not come back, but there was not much hair their to start with so at worst this is really just an inconvenience. Like yourself, towards the end of the radiotherapy I started to get tireder, and dizzy at times, and the doctor's have mentioned that the additional tiredness may hang around for 30 or so days.
I have also only just recently started to reduce the dexa. We tried to halve it very early after starting the radiotherapy, but I got a headache and we decided to go back to the previous dose. But have reduced it again about two weeks ago and hopefully can reduce it further in just over a week. I have also put on a lot of weight due to the dexa (I think). Although I am eating healthier foods now so hopefully the weight gain will stop.
Keep us updated on how you are doing if you would like because it would be helpful to know.
Cheeers - Mark
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Thanks for your comments. I'm sorry to hear that your husband's cancer and symptoms have returned. I think that it must be everyone's hope that this does not happen, or is delayed as long as possible. It must have been a very hard decision for both your husband and yourself to refuse a second operation. When/if my cancer re-occurs and if an operation is an option I do not know what I would choose. My second operation was only about 5 days after I found out I had GBM and I think that is the scariest decision I have ever made. I understand your husband's choice to not have additional surgery and I hope that the chemo drugs do their job as much as they can, and that the outcomes are as good as they can be.
I have still been doing very well and I have just completed the radiotherapy and initial course of chemo last Friday. The radiotherapy has made me a bit tireder than normal and I can get a bit dizzy times - but overall I am very happy with the treatments to date. As you mentioned - I am hopeful that I do not get any additional symptoms over and above what is usual, but all I can do is to prepare for that possibility as much as I can and try to make the most of any situation that arises.
Please feel free to share anything here (or on the forums) anytime around your husband's progress. On the one side of things it can just be helpful to write down your thoughts when going through what must be a very hard time for your family, but I also think that there would be people that will find it helpful to see what other people are going through with GBM, and who also want to send positive thoughts as well.
All the best
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I had my second operation about a month ago and since then have been really happy with how things are going. I have been able to do most things like cooking, cleaning, walking, shopping, going out with friends and things like that. I have treated this time a bit like a holiday and have enjoyed it.
I started treatment with Chemo and Radiotherapy two days ago and have not had any side affects from it so far but the doctors said that the most likely thing is that over the course of the radiotherapy I would get tireder and tireder over the course of the treatment but it does not happen to everyone and they think I will be okay with it - but will see what happens.
From yesterday the doctor said that I should half my dosage of the dexmethsone, which should be a good thing if that does not have any major affects because some of the side affects of dexmethsone are irritability, over eating and weight gain as well as sleeping difficulties so if those things can be reduced it will be a nice thing.
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Thanks for your comment! I am sorry about your husband dying but glad that you had quite some time with him before he passed away. I hope that you will be able to make the most of the new phase in your life and that over time you will be able to move forward to good things in the future.
I think that I am as ready for the roller coaster ride as ever as I could be. I just started treatment in the past couple of days, and have been successfully trying to enjoy life as much as posisble so I'm pretty happy at the moment. I saw a documentary about Doc Neeson, lead singer of legendary band the Angels on the ABC the other day and he was diagnosed with brain tumour around 15 months ago. You never know what goes on behind the scenes but if I am as well as he looks to be in 15 months I will be a pretty happy person!
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Hi Mango, Thanks for your comments.
It is fantastic that your husband is still with us after over 7 years. Well, it sounds like your denial and hope is working well for you, so I would stick with it unless it ever stops working!
I do not really advocate for a defeatist attitude. To me it is best to hope for the best, prepare for the worst and do everything to make the most of everything that I (we) have got.
It is nice to hear from you.
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Hi. My name is Mark. I am 43 years of age. I live in the inner suburbs of Melbourne, having moved from Sydney around 8 years ago. My partner’s name is Nat, and we have no children. For the last 10 years I have worked for a major health insurance company in and around their call center in lower level management and organizational roles.
Around two or three weeks ago (maybe 21 March 2014) I was diagnosed with terminal brain cancer. The technical name of the illness is Glioblastoma. This is the most malignant and aggressive form of brain cancer. I will try here to explain the prognosis as I understand it at the moment, however It is most probably not 100% accurate; will be refined once I have more appointments with oncologists, palliative care doctors and other health professionals; and no doubt the prognosis for this illness will depend upon all sorts of factors such as age; health; and the nature and position of the tumor. The doctors have suggested that without treatment the tumour is sure to grow, or come back in other places. The tumour will impact my brain function. How that may look is unclear. I will die in around 12 months.
With treatment, the prognosis is likely to change. I have had two brain surgery operations since the 19th of March 2014 and the doctors have taken out as much of the tumour as they possibly can. I understand that this is the absolute basic requirement for further treatment. Firstly I am pretty sure that without the first operation to take out as much of tumour as possible the pressure that was placed on my brain as a result of two large tumors would have killed me. As that was an emergency operation the neurosurgeons explained to me that they thought they could have a second go at the tumour that were left in my brain, to ensure that everything that was possible that could be removed was removed as that has an impact on survival and maybe quality of life. This made a lot of sense, and while it was scary for me to sit down and make a rational decision to allow surgeons to cut into my brain and try and dig out errant tumuor cells, there was not really a choice to be made from my point of view. The operation, which was performed on 28th of March 2014 was very successful and I have made a great recovery and am improving every day. Pending discussions with radiotherapy oncologists and medical oncologists I may now schedule chemo treatments (apparently a low impact chemo drug that may serve to extend my life without having a detrimental affect on my quality of life) and radiotherapy. No doubt things will become clearer after discussing with the oncologists.
I have a few reasons for writing this blog:
1) I think it would be useful for people who are newly diagnosed with Glioblastoma to be able to reference from start to finish one person’s journey with the illness. If these already exist it will not hurt to have another one.
2) Provide a semi creative outlet for myself.
3) Allow my friends and family to see how I am doing if they wish.
4) Express my thoughts on life, dying and a diverse range of subjects.
At this point in time I am very “with it” and can express myself pretty well. It is my hope that this lasts as long as possible and I can continue the blog up to as close to the end as possible, but we will just see what happens. Please also note, I have quite a strange sense of humor and outlook on life. I am not sure if I can blame that on the brain tumour or not but be warned – this blog is sure to offend. I am not talking about offensive language, or dirty jokes and that sort of stuff but probably more at humour directed towards things people think are too serious to be joked about, and maybe some controversial attitudes. Please read at your own personal risk of being offended.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.