What to do?

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

I'm 21 and have a mother, 54, who was just diagnosed with GBM. She had the tumor removed last Tuesday (we went into the hospital on Sunday because of a bad headache) and has been recovering in ICU for the last week.

She has her left vision clipped and has difficulty moving her left arm and leg, but hopefully will recover with rehab (although the doctor says she will never recover her vision).

In about three weeks she is supposed to start chemo (Temodor i think) and radiation therapy for 6 to 7 weeks. This is all supposed to be administered at home.

What should I expect during the chemo period? She does not know it is terminal yet and I want her to have the best quality of life. Should I try to take her on a trip before she starts chemo? Will she be able to move around once she starts?

If anyone has any other advice, I would love to have it. I really know nothing about this...I don't know what questions to ask or what else to look for.

Sammict · Posted: Mon Jan 29, 2007 4:32 pm Post subject: Re: What to do?

Hi There,

I'm so sorry to hear that your mother has GBM, reading your post brought back a lot of memories for me.

My first question is, do you know what Grade tumour it is? Have they given you a prognosis?

My Dad was diagnosed with a Grade IV and given 6 months to live. Following his operation and a week in ICU we took him home and about a week later decided to go on a family holiday which we hadn't done since my sister & I were kids, we only went for 3 days but it was fabulous and I will cherish it forever. Although he had undergone brain surgery, he was amazing. We we had him running on the beach when we were playing ball! There are so many funny moments from that holiday, for 3 days things felt "normal" even though we all knew they weren't. But what it did do was give us time to step out from the devastation we had been through in the previous 2 weeks and from the heartache that lay ahead.
So my advice to you, is yes, if your Mum is well enough, go away, go somewhere beautiful, take your camera & video camera and capture every moment.

As for chemo and what to expect, it depends on each person. My Dad was on Temadol which is given orally and having aggressive radio at the same time. Luckily he had no side effects apart from sleepiness. But the sleepiness does get worse as the treatment progresses, to the point of "sleeping sydrome" when they can fall asleep even standing up.

I undertsand you have lots of questions, ask your doctors and feel free to ask us, we may not always know tha answer but we can advise you from our own experience.

Tell me, do you have any support or are you going through this alone?

Book that holiday and enjoy! Let us know how things are going.
Thinking of you and your mum.
Sam

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

We have not officially had any of that. After the surgery, the doctor came out and told us he thought it was most likely GB IV, then pathology came back yesterday and confirmed it was GB, although I have not heard about the grade. It seems likely that it is IV. We have a meeting on Thursday with the oncologist and radiation specialist. We may get more information then.

I found out more information today about her treatment. She will likely be in the hospital doing rehab on her left side until she starts chemo and radiation, then will head home. It looks like my idea for a trip won't have a chance, which is very sad. I visited her shortly today and she kept saying that in a year we would look back on this moment and laugh. It was so hard to keep from crying. I can't imagine how painful for her this will be once she finds out how serious it is.

I have great support from my extended family locally, but this is still a very isolating experience. My closest support is by phone and it has been very difficult.

Thank you for your reply. It is very nice to have found a place where people have gone or are going through similar things to me. This seems like a warm place. I will update as I get more information.

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

Mixednuts,
Don't give up hope on that trip. Dad had about a week between having his mold made for the radiation and actually starting treatment. Also, he had radiation 5 days a week, so a weekend is certainly possible. If you go early on a Friday you may be able to just leave out from there. Dad was much better in the beginning of treatment. Almost seemed to get back to his old self. Couldn't do all the physical things he had done, but just talking and acting like he did before. Even a weekend is worth it if you can swing it. I know it is hard to add on top of the daily trips to doctors and radiation, etc. but I would do it if you can. Dad did not have many bad side effects (what you normally associate with radiation and chemo from this treatment). He was definitely more tired as the weeks went on.

We'll be here for you. My thoughts and prayers are with you.
Michele
_________________
Michele

Kris · Posted: Tue Jan 30, 2007 11:18 am Post subject: Re: What to do?

Dear Mixednuts,

I can only confirm Sammict and Michele - my Mum had inoperable GBM so she was on palliative care only with lots of steroids and pain killers (morphine) which had some nasty side-effects.

However, I took her out for a week-end when she was still capable of walking slowly - I also encourage you to take your Mum somewhere until it is "motorically" possible.

That one week-end is now one of my most beautiful memories with her...

We are here for you to listen and give suppport.

God bless,
Kris

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

Thank you all for your kind words and encouragement.

More news...today I showed up at the hospital and my mom had a 103F temperature, so she got a blood culture, an xray on her lungs (to check for pneumonia) and an MRI to check her head for swelling. She was put on two different antibiotics and the hope is that it will just calm down by itself. We will get the results of the MRI tomorrow and hopefully everything will just relax, so she can actually begin therapy soon.

The worst part is that I couldnt speak with her at all today because she was either asleep or completely delirious. I assume this is from the high temperature. Hopefully tomorrow she will be more awake and I can talk to her. More updates later.

Kris · Posted: Thu Feb 01, 2007 2:41 pm Post subject: Re: What to do?

Hi Mixednuts,

I keep my fingers crossed for you - how's your Mom today?

I'm sending lots of good energies towards you,
Kris

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

Thanks for your comments.

Yesterday was a bit of a scare. Two days ago her temperature had gone up to 103 and she was very out of it. I left her around 10PM and went to bed. I woke up at 7 the next morning and heard that she had been moved back to ICU because she was "not responsive", I found out later this means they couldnt wake her up. So they brought her back down and put another vent drain in her head to relieve any pressure. I came in around 8 and she was tied down and very upset. She was screaming and did not recognize that I was there.

She had developed a rash covering her entire back from an antibiotic they had given her. It had penecillin in it and she has a very clear history of allergies to penecillin. I have no idea why they gave it to her. She was very upset about that and her left leg had been cramping pretty bad. Eventually they gave her a sedative and she went for a CT scan. Around 5PM the surgeon came and told everything that her head ok (whew) and that she just had some minor swelling. We're not sure whats causing the temperature, but everything else appears to be ok. She's had numerous blood cultures and xrays and nothing is showing up. One doctor suggested that her three-port thing that goes to her heart may be causing the temperature, so that may come out today and be replaced with wrist ports.

Anyway, she should move out of ICU today and back to the rehab floor and she may begin PT,OT, and ST tomorrow if her temperature goes down. She was in good spirits last night and singing songs.

I will update with more information as it comes.

Kris · Posted: Thu Feb 01, 2007 4:58 pm Post subject: Re: What to do?

Hi,

Oh, it sounds that you had busy past two days. It must have been tough both for you and her. Finally, I'm happy to hear she calmed down and had her good spirits back.

Great news she has only mild swelling and the head is relatively OK - it's really good news!

We also had these "ups-and-downs" with my Mom, one day was better and the other was worse. One day she was upset, even agressive, the other day she was silent and calm.

Keep us updated and take care of yourself.

Kris

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

Mixednuts,
Just want to second what Kris has said. Hang in there. Some days will be worse than others. And some will seem almost too good to be real--take advantage of every second of these days.

I am thinking of you,
Michele
_________________
Michele

mixednuts · New User Joined: 28 Jan 2007 Posts: 9

Now posting almost 2 months later. My mother continued to improve after my last post and was out of the hospital after a couple more weeks of therapy. She returned home and within a week was making her own meals and taking care of household chores (feeding cats and dogs), and very active (taking lots of walks). She then began 6 weeks of radiation/Temodar which she finished about a week ago. She handling treatment extremely well. She has not had any mood swings with treatment, maybe because she is not on steroids, and is excited to finally be finished with the daily visits to the radiologist.

We are now in coast. She feels extremely good and is taking 6 weeks to recoup from her treatment before beginning the 5/28 schedule of Temodar.

What should we be doing during this rest period? She seems to be so good, its hard to even imagine that she is ill. This makes me believe that we have an opportunity to explore other treatment options not available to those who dont respond so well to treatment? She will be getting an MRI in 6 weeks and I want to do anything we can to help her chances.

Should we explore clinical trials? I've been told there are no clinical trials in my state, but I suspect due to her energy level she would be a good candidate for a trial somewhere in the country.

Anyway, everything is going well here, wish everyone the best.

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