Grade 3 glioma - timescale for effect of radiotherapy

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Sadly my 60 year old mother in law was diagnosed with this tumour in November last year. She has had longstanding health and mobility problems which may have delayed diagnosis. She was suffering symptoms including neglect of one side, difficulty reading, disorientation, problems with balance and general confusion.

I am just wondering when/if she is going to see an improvement in symptoms following surgery and radiotherapy.

She had surgery in December to remove about 50% of the tumour. She recovered fairly well from surgery and then had 6 weeks of radiotherapy starting in February. Since the radiotherapy completed at Easter, she has been very fatigued and until the last couple of weeks was sleeping a lot. She is still having problems such as difficulty reading, forgetting names of things, confusion, not noticing things on one side etc. The docs attempted to decrease her steroids (dexy?) however this resulted in a worsening of the symptoms again so they have put them back up again.

Its now about ten weeks since the radiotherapy ended and although she is less fatigued, I am concerned that her neurological symptoms may only be being held in check by the steroids. How long should it take to see an improvement due to the radiotherapy, if there is any? She is due another MRI in mid July which will be 3 and a half months since the end of the radiotherapy.

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Carmella,
Everone's case is different. I know for my dad, he seemed to have improved symptoms during the radiation, but went down after the completion of the first round. I think getting the next MRI will be helpful in being able to evaluate your situation. I know waiting and looking for any signs of improvement is so hard, and you are always second guessing if you are really seeing improvement, or if it is just the medications, or if it is something new, etc. I'm sorry I can't give you a better answer, but want you to know that we are here to support you wherever this disease takes your family.

Michele
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Michele

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Thanks for your kind reply Michele. We are very much in the dark as we only have my mother in law's version of what the doctors have told her, and I am not sure how frank they have been with her. For example, she was in hospital for ten days after her first MRI before they told her she had a brain tumour. This came as a shock to her as she had previously been told she had a "cyst" on the brain. hence I am trying to get some guidance from elsewhere.

brainman

Carmella, I certainly can understand your skepticism about how frank your mother's doctors are being with her. Some doctors just need to be told: "We want to know everything!" or to be asked: "What else can it be?"

Can you be a little more specific about the cell type involved? A glio cells is actually a family of different cells. It probably does not make any difference but you can never tell.

If you read my history, you will see that I faced a grade 3 oligodendroglioma in 2005. It was actually a recurrence of a previous cancer in 1992. I am still here!! Although I have some right sided weakness and have to take meds to keep from having seizures and am on disability, life still goes on.

I will keep you and your mother in my thoughts and prayers.
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
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Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Brainman, thank you for your kind reply and sharing your own story. I dont have any more information on my mother in laws tumour. As far as I know "grade 3 glioma" is all she has been told. I did ask her and FIL if they knew any more, but neither of them are the type to push the doctors for more information. If it was me I would want all the facts but thats just not their way.

brainman

It is not their way and we have to respect that. Some people want to know everything possible. Other, only want to know the bare minimal. In the end, it probably does not make much difference... except maybe its location since that would help her to know what to expect. My mother's cancer affected her in a different way than mine affected me because of difference in location. She did not become blind, however, she lost the ability to merge the information coming to her brain from her left eye. i.e. if she put her hand over her right eye she could see fine out of her left one, but it she uncovered both eyes, she was totally unaware of anything to her left. Anyhow, that has nothing to do with your mother except to say that location is probably more important to know than cell type.

I hope you have a good weekend. I will continue to hold you in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Dear All,

My thoughts are with you and your loved ones. I have not been here for a while but we have had a further development.

Just to recap my motherinlaw has a grade 3 glioma, right parietal lobe i think judging by location of operation scar and symptoms (neglect of LHS, anomia, spatial confusion etc). Diagnosed Nov 06, surgical removal of 50% tumour in Dec 06. 6 week radiotherapy Feb-Mar 07.

The news is that she had a follow up scan in mid July, 3 months after her radiotherapy ended which revealed that her radiotherapy had not been "100% effective". This was not a complete surprise as she is still showing symptoms, despite a daily dosage of 2 mg (or is it microg?) dexamethasone (I think). they did try reducing the steroid dosage further but symptoms worsened.

She is starting a chemo regime next week which will comprise 2 cycles, each of an injection followed by 10 days of tablets, then a 4 week break. Does any one have any ideas what drugs this is likely to be? We are in the UK.

She has had a really rough time with the treatment and the radiotherapy seems to have left her worse than she was before. She is early 60s and in poor health anyway, so I am not sure chemo is the best idea...but presumably docs must have made some sort of cost/benefit judgement?

I would just like to have some idea of what to expect, she never seems to get much info from the docs and I dont like to push her for details when she is in such a vulnerable state.

jenugl

Hi Carmella, I can't tell you what to expect or what drugs they will be, as my partners case is different - as in age, health, type of drug used and position of tumour removal. I can only send you and your family my love and support. I hope whichever treatment your Mother has it brings some relief for her. Love to all. Jen.

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Hi folks, I have just been catching up on how everyone is as we have been away for a couple of weeks. thanks for all your messages of support, which I really appreciate. my thoughts are with you and your families too.

Unfortunately we came back from holiday to find out that my mother in law has suffered some kind of seizure. she started fitting in the middle of the night and the GP (family doctor) was called. apparently they think she has had a bleed into the brain caused by the chemo which she is taking. she has been left further weakened and now needs a walking frame. however they have not admitted her to hospital or ordered any scans. Can this be right? Should an ambulance have been called, and what should be done if this happens again?

We are going to see her this weekend (she lives about 200 miles away) so hopefully will learn more then about what is going on, but I would appreciate any advice anyone has.

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Well, I'm back from visiting with the inlaws and although as you know I have been suspecting for a while that things are not going well, when the bad news came it was still a bombshell.

My father in law had to tell us, barely holding it together, that the chemo treatment for my mother in law is intended to buy her some more time - but it will not fix her and there is nothing else that can be done. When he told us this, I felt like i was watching it happen down the wrong end of a telescope, it literally felt like I was not in the room.

I have never seen my husband break down and cry like a child like that thirteen years of marriage, when he realised that his mother is going to die from this. I had to force myself to type the last bit, it is so hard to say.

I was calm initially, I have been through the same thing with my dad (who also has a terminal diagnosis) and so I was able to keep the head and try to stay strong for everyone else. However I started to go to pieces the next day, feeling sick to the stomach, legs trembling and unbelievable feeling of anxiety.To top it all we then had car trouble and I was sick with worry that we would not make it home safely.

I keep thinking whos next? Two of my kids grandparents have had a death sentence placed on them in the last year. I am so scared that something like this could happen to one of them or myself/husband - we need to be around for them and I couldnt bear for them to lose a parent. How do you get through life when you know that at any time another blow like this could fall?

brainman

Carmella, I am so sorry to hear about your mother's poor prognosis. You go on from here taking one day at a time. That is much easier said than done. However, it really is the only way any of us have. Try to make today as meaningful as you can.

All of our prayers are with you.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Carmella · Regular Joined: 18 Jun 2007 Posts: 12

Thanks Jim, you are quite right. Thanks for taking the time to acknowledge my post, I am not much help to anyone else right now so I feel a bit bad about not offering much response to others on here. I know from your other posts that you have been through an awful lot and I hope things work out for you. You have offered so much support to others here, I hope you realise what a fantastic help it is.

jenugl

Hi carmella, my heart goes out to you. I am so sad to learn you have two close loved ones diagnosed with terminal illness. Please know that my thoughts are with you, your Mother In law and father along with your family. As Jim stated - Take it one day at a time and know that we are here for you. Sending you a hug, support and love. Jen.

In

Hi Camillia,

I ,too have been following your story, I haven't been able to advise or help. But did want you to know I am thinking of you and your family.

Do as Jim and Jen say- take each day as they come. Take the time to see the sun rise and set, smell the flowers. Watch children play and Laugh. Enjoy life. Take time to enjoy. Remember- The risk of any Cancer is there, but so is the bus coming around the corner, the drunk driver coming down the highway.

No one knows what life, or God has install for us. So whats the use in worrying, unless we have to. Wink

Take Care- Inica
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Thinking of you Inica

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ksplat

Dear Carmella
I have been watching & reading your story about your MIL.
You haven't been on the forum for a while & I am wondering how things are with your MIL & your family?
As I write I am fearful of the worst news of your MIL because we all know what this awful illness can do to our loved ones, in quick time.
Please know you are in my thoughts & prayers & if you are able to give us an update I would be grateful (& relieved somewhat)!
My thoughts & prayers are with you.
Cheers, Aussie Angie.
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