Suggestions on regrowth of GBM

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Hello everybody!
This is my first post, so bear with me please.

My dad had an egg sized GBM resected 3/1/7. The surgeon said they got as much out as they could. Chemo wafers were put in, but then dad decided not to do chemo or radiation. He preferred a faith based approach. In the past couple weeks, he has slept 19/24 hours a day, thrown up a couple times a day, and has had pain on and off. He gets to the point where he is crying and shaking, but refuses to take pain meds. It makes me crazy to see him like that. The doctor just put him on some steroids to help with the swelling and hopefully the other symptoms. Yesterday, they did a CT, and found that where they resected the old tumor, one has grown back, as well as a new one, about the same size, on the other side, with midline shift.

The doctors are still wanting him to do chemo. They also are offering to do surgery. The problem is they can't do the surgery once to get out both tumors. They have to do two. ( which they say would most likely leave him a veg. for lack of a better word). So I think we are deciding against the surgery. We can't have a conversation with him without him falling asleep. So it is hard to get an answer from dad on what he wants to do. This is a very hard decision for us. He is 48 years old. From what I have researched, GBMs are pretty unstoppable. I don't know. We had so much faith that he was okay, and now this.
Does chemo cause too much suffering for someone who has GBM to this extent?
Does any body have any suggestions on what you would decide? It is hard to make that FINAL decision.

Thanks in advance!
-sarah

brainman

Hi Sarah, my heart goes out to you. I am so sorry about your father's cancer.

My mother died just over 9 years ago due to a GBM just 2 months after diagnosis. She opted for no treatment at all. She was also 35 years older than your father. Her cancer was much larger and was not shaped like anything I have ever seen... maybe like a octopus... so it was inoperable when it was diagnosed. Nevertheless, I am glad that it was her decision and not mine. I do not know what decision I would make for her. My mother did take steroid AND pain meds for a while. But, eventually she was sleeping almost all the time and did not need them. She died peacefully with my father and me holding her hands.

I was diagnosed with a grade II glioma almost 15 years ago when I was 38. I opted for chemotherapy only because of the danger that I might loss total use of my right side. The chemo did make me very sick for the 13 months that I took it. Did they do a genetics test on your father? There is a genetics test that can show how likely a person is to respond favorably to chemotherapy. I happen to have that gene deletion so chemo worked for me where it might not work for someone else.

Both my mother and I were/are people of faith. Faith plays I great role in how I live and how my mother lived and died. Hang on to your faith because from there you will get strength to face the days ahead of you.

You and your father are in my thoughts and prayers.
_________________
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/

In

Hi, Sarah
I have no idea when it comes to brain Cancer- but wanted you to know- i'm thinking of you and your Family. It's so hard to watch someone you love, especialy when they are in pain, fight Cancer.

I hope you get the answers you are after. Follow what your Dad wants and just be there.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

This is just a quick update.
The neuro oncologist my father sees got an MRI for a better picture, and that confirmed the two large tumors as well as a few growing around those. So far, my dad has decided against any treatment. He would still like to go at it with a faith based approach, which I think has worked well for him so far. He is very optimistic, which is great. The doctors predict that he maybe has 3 weeks to 2 months left, but he is so strong and stubborn, I bet he will make it longer.. He is the strongest person that I know, I don't put anything past him. He is still walking, and talking, and making trouble, mischiveous man that he is. But I guess the progression of this goes pretty fast? We are spending as much time together as possible, even though a majority of it is spent with him sleeping, which I know he needs.
You guys have been great, thanks for all your support, and I will keep you posted.
-sarah[/img]

brainman

Sarah, it is almost unheard of to have two tumors... GBMs rarely spread beyond the same location. Are his tumors in any way connected? Have they ruled out the possibility that these other areas might be something other than cancer... like a stroke or hemorrhage?

I can sympathize with his wishes for no further treatment. My mother made the same choice and I still think she made the correct one for her situation. But I was also sure that she was basing her decision on sound medical advice and information.

You and your father continue to be in my thoughts and prayers.
_________________
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/

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Sorry it took so long to reply brainman, I asked the doctor about if the tumors were connected, or separate in regards to dad's tumors. She said they were connected. I don't really understand everything to tell you the truth.

I am now just working with work on getting fmla so I can help out more. Though I do not qualify until the 19th because I took a full 12 weeks when my daughter was born last year.

I would say daddy is doing pretty well, but has made some weird requests lately, and I am just going to beleive that it is not him talking. He is still eating and talking, just different.

Conngratulations on 15 years!
-sarah

brainman

Thanks Sarah both for the update on your father and the congratulations to me.

I suspected that the two areas where connected. Very rarely does any form of glioma grow in two or more distincter areas of the brain... most of the time they are connected. A glioma is like a cotton ball with little fibers stretching out form the main tumor. Sometimes it is hard to see those fibers that why surgery is so dangerous. The surgeon needs to remove so much in order to have any hope of removing it all.

Sarah, I totally understand that you cannot post often because of work. Just post whenever you can Wink

. You and your father are still in my thoughts and prayers.
_________________
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/

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Hello everybody...
Have any other care givers experienced anxiety of what will happen next?
I hear him make a sound in the other room, cough, anything, and my heart races. I am so scared that I am not enough, that if something happens, i.e. a seizure or anything, that I will not be able to take care of him. I know the basics of what to do in certain instances, but I am just so scared. I get nauseous just driving to his house when no one else is there to meet me.

sorry, I had to get that off my chest. I feel so selfish for having that anxiety, I am not the one suffering with cancer!

Dad decided to go back on steroids because of vommiting and headaches caused by swelling. then when he started feeling better, he decided to quit again. after less than 24 hours, he started vommiting again, so now he has decided to take his meds again. He just hates the side effects of steroids. Poor guy. He is still sleeping a lot. But loves to eat, and watch movies. I get a daily report.

I have noticed that he is calling my daughter by my name, and I think, "is that tumor talking, or just a flub?" I don't know, he did it a few times though. hmmm.

I am the only one in the family who has contact with his father (intermittent,) and I called him the other day with the prognosis reported by the doctor, weeks-months, and he is actually going to come out to Colorado from Maryland to visit for a couple days. Dad seems excited about that. He says, "a sweet little bird must have brought him the message." They have not talked in a long time. Too many family issues to burden you all with. I am sure you all have enough on your own!

So I hope that goes well, I hope I didn't do something stupid. But I do beleive that his dad should know what is going on.

It is kind of sweet, but sad, he seems like a little kid now. Always wants pizza! And is so mischevious!

Also sad for his wife, who shares with me that he has been making some extremely off requests of her(in the bedromm). That most daughters don't want to hear about, but I don't mind. I am just glad to be there for her and pray that this part she talks about will just go away.

I feel blessed to be around him, but am just so scared.

any ideas for making myself calm down?
Thank you all for being here for me to talk to.
Good luck to all who are on this whole forum, for they are here for reasons similar to mine.
-sarah Wink

brainman

Sarah, there is something very unique and special about anyone who cares for someone with cancer. No apology needed about "feeling so selfish." You are not selfish. You are a concerned and caring daughter and your mother and father are lucky to have you at this point in their lives.

About the steroids issue: It is not safe to go on and off of steroids cold tuckie. Try to keep your father on them for as long as his medical team says he needs them. I do not know exactly what is causing him to not want to take them anymore, but it is not safe. At this point in his life, the benefits greatly outweigh the risks.

I am glad to hear that your grandfather is coming for a visit. My relationship to my father was strained for a long while... until we both got sick. Then we drew together and actually learned from each other Smile

. Hopefully, during this visit some family issues can be set aside as irrelevant at this point in your family's life.

I know you are scared. I was too. You said that you were not the one with the cancer. However, in a way you are also living with cancer... second hand maybe, but you are still having to deal with it and how it affects your life. And living with cancer is scary. The way to calm down is to try to find ways to bring meaning to this terrible situation you are in. Angie (ksplat) is making a list of questions for her brother to answer so that his family will have something to remind them of how special he was. Find something like that to do with or for your father. There are so many things you could do that would chaise the fears away. Just look for the right one for you and your father.

You know that you and your father are always in my thoughts and prayers.
_________________
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/

jenugl

Hi Sarah, I'm so sorry you are going through this. I know how you feel being the carer. My partner has GBMIV and is only 45. He is in great shape at the moment so alot of my worries have eased for now but I can relate to the way you are feeling when you say you feel selfish as they are the ones with the cancer. Don't feel bad, there are alot of different emotions you go through and it's only normal. I even felt verry angry at him (even though I didn't show it) wondering why he was going to leave me alone and how could he do this to me - even though he had no say in it. These emotions pass and usually onto a different one. Try and make the most of every day you have with your father. I'm thinking of you all and send you my love and prayers. Jen.

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Thank you for your encouraging words today, they really helped. I took you up on finding things to do with him to create memories. It did help. I brought a take and bake pizza for lunch, and then made the whole family some roasted chicken, veggies, stuffing, rolls. they are all working so hard, I thought maybe it would be good to make everybody dinner ( and keep myself busy), otherwise I fidget! lol. Dad loves to eat, so he liked that! Very Happy

we keep trying to talk to him about being so irregular in taking his steroids. we bring him his meds, but the rascal knows which are steroids and somedays refuses to take them. I guess it is the old lead a horse to water saying. He just hates the fact that his face swells up, and he gets really bad acne from it. But today, he agreed to take it, so I'll take it! one day at a time. Laughing

I was finally able to talk to dad about his nails today, he was awake for like 7 hours! that is big for him.
Come to find out he didn't want to cut his nails, because the ends of his nails were there when he was still well. He was tearing up when he told me this, it just broke my heart. Crying or Very sad

But his nails were so long, and cracking, and he was scratching himself, so I made a deal with him. He wouldn't do it for anybody else, but I bribed him with my famous chocolate cookies. And I promised him that I would find a ziploc baggie and a little box, and that I would put the clippings in there instead of throwing them away. I know it sounds gross, but it worked! This way he could still have the reminder. ( I also think he was scared of cutting himself). Dad still won't let anyone shave his face, but that is okay. Daddy got a manicure and a pedicure today. He loved it, and I was happy that I could help him out. It was nice to spend that time with him. I also brought my grandson, I thought I could alternate bringing my one of my two kids, so it hopefully wouldn't be too much stimulation for him.

We had a nice time..
thank you all for your support jenugl and brainman, you are great!
Hope to talk to you all soon.
-sarah Wink

ksplat

Hi Sarah
I'm sorry for not replying earlier to your thread. I have been keeping up to date with your Dad's progress though. Please know my thoughts & prayers are with you, your Dad & family.
My Bro has had his GBMIV since Feb this year & there have been highs & lows. This is a hard road to travel, with support from your family & your Dad's strength & positive attitude I am confident your journey will be a spiritually uplifting & a positive experience. Please know you have our support, comfort & understanding on this forum.
My Bro had surgery in May to debulk tumour as it had grown so rapidly he was having terrible seizures & was barley able to walk (deficits on his left side from R Frontal lobe tumour on brainstem). He has continued to have movement deficits since this surgery. He was also taking steroids earlier in the year but has been weaned off them for the moment as the tumour growth seems somewhat stable.
Recently he had further debulking surgery as the tumour had grown into 2 tumours & quadrupled in size in 1 mth. He hasn't had any further deficits since this last surgery.
He & his wife are making "every day count". They have just left Aust for a 2 week holiday in Hawaii. He still has his wicked sense of humour & a strong & positive outlook. He says he will beat the odds! We pray for this outcome too.
The journal I am making will be a tribute to Mark's life, to be passed on to his family, his kids & grandkids, etc. Having projects like this helps to occupy my mind so I'm not focusing on too many negative feelings. It sounds like this is the approach you are taking & this is good.
Make every day count too! This is most important! Perhaps you could undertake a journal or something similar for your Dad. He is such a young man & my heart feels heavy thinking of you caring for your Dad.
God Bless Sarah.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

Sarah, saving your father's fingernails is a very neat idea. If I understand you right, they are symbols of when he was still healthy, free from worries about cancer. It is important to presence those memories and if that takes putting is nail clipping in a zip lock back, then I say it is a wonderful thing to do Smile

.
_________________
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/

SESPARR · Regular Joined: 24 Oct 2007 Posts: 15 Location: COLORADO

Hello everybody! Hope all is well with all of you!
Daddy has been having a hard time since Thanksgiving. He has been having trouble reading, which is hard for him because for as long as I can remember, he has read the Bible everyday. It has been a big part of his life. So we read to him now. He also cannot really see the TV or remember the characters. So the whole time we are narrating the story, and telling him who is on the TV. Which is also hard for him, because when he is awake, all he does is watch TV. He also won't bathe anymore, or let anyone else bathe him, even his wife. Every once in a while, he will let her use a rag on him, but that is it. Also, he has always been a very warm temperatured man always liked the temp around 65 in the house, but now he is always cold. We can pile blankets on him, but it makes no difference. I also wonder if it is becoming too late for the steroids to help much, because he has started vommiting again. He was up every hour last night. He also won't stop drinking water, He drinks like 150 ounces a day. The other daywent to lunch with his wife 13 miles away, on the way home he had to stop to use the restroom 3 times. Then when they got home, he had to pee outside the front of the house because he couldn't wait. My grandma is also coming to terms with the fact that her son is dying. She asked if I thought he would make it to Christmas. I told her that I hoped so, but considering his deteriorating condition and the fact that he is eating half what he used to, I didn't think that he would. Sad

I am so glad you guys are here to talk to, I just need to get all this off my chest to and to clear my head and focus.
My daughter is turning one year old on Thursday. I wish I could plan a better party, but I am just going to do something small and quiet at dad's house because he really wants to be there.
Finals are also coming up, I just need to organize my thoughts and time to take good care of my family, my father, work and school.
Just busy, but I am glad that I have the oppurtunity to be there for him.
Thanks guys for everything.
-sarah Wink

Angie205 · New User Joined: 25 Nov 2007 Posts: 6 Location: Wisconsin

Hi Sarah,

I feel your pain. My mom isn't too far behind your dad. She had three tumors, the largest about the same size as your dads. Her vision has been hazy for over a month. The steroids don't help her with that and she wants to go to the eye doctor, but we're told it won't help. The steroids might help with other side effects if they can reduce some of the swelling. I don't know why he's vomiting and drinking so much, but it's possible it's pressure put on different parts of the brain. We have just increased my Mom's steroids yesterday by double to help with her thinking. She's been thinking all kinds of neat things are happening that haven't been. At least she's been happy.

You are a very wonderful daughter to take such good care of your Dad. I have a 16 yr old daughter and a 14 yr old son. It is a challenge to do it all. Our kids need our attention so much at this time and they pick up on all the stress and sadness. Having a quiet birthday celebration for your daughter sounds like the perfect and appropriate thing to do right now. It will be a memory you will always have and cherish. The big parties will come later.

Hang in there and do what you can to take care of yourself. Even if it means eating something decadent or spending a some money on yourself. For some reason, those little things have helped me stay grounded.

My thoughts are with you and I feel your pain. Take Care,

Angie
Mom, 69, GBMIV, diagnosed Sept 2, 2007

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