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My dad has a glioblastoma multiforme stage four.... Some advice please!!!!!

Shmay27
Posts: 8
Joined: Aug 2012

Hello everyone. My father was diagnosed about three months ago after what we thought was a stroke, but then we found out it was a seizure due to the tumor. It is inopperable and about the size of a walnut to start. The explained to us that there isn't any true cause of this type of cancer and that it is extremely aggressive. We went ahead with six weeks, five days a week radiation and temador orally. He has also been taking the trial medication avastin intravenously. It has now been two weeks or so and he is going for his MRI tomorrow to see if it has grown, stayed the same, or shrunk. I have read many places that statistically gbm patients with inopperable tumors live approx. three months after diagnosis which was terrifying but now we are three months in and he is definitely weaker and having other issues but Still going on hikes and trying to live life as normal as possible. I felt that our doctors really haven't been honest or are just avoiding what's to come and we feel a bit left in the dark when we would like to mentally and emotionally prepare ourselves for what could be to come whether the results from the MRI are good or worse. If anyone has any advice or stories or input of any kind it would be greatly appreciated!!!

Thank you,
Kayla

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

Kayla,
You need to remember there are no real timelines with brain tumors or treatments. Treatments have advanced in this area, to where patients are outliving the old timelines by years. Your father is doing the right thing, by living his life to the fullest of his ability- just enjoy each memory
making moment.

Tubbs
Posts: 51
Joined: Jul 2009

It's probably not that the doctors aren't being honest...it's that they don't know exactly what's going to happen. This has been my expience. Every tumor in every body is different. That's part of what makes the damned things so bad: the unpredictability. The doctors are very cautious about getting the patient and family too low or too high with hopes.

You could have five different doctors look at your father's case and I can pretty much guarantee you would get five different opinions.

As for Avastin, my wife has had a pretty good response with it, but it is by no means a 'cure all.' It is, however, one of the best newer weapons. You're father is 'fortunate' he's had it prescribed and is able to get treated with it.

All the best for you and your father.

Shmay27
Posts: 8
Joined: Aug 2012

Thank you for your replies! My parents just called from the hospital saying that the doctors said the MRI was good even tho the tumor hasn't changed size at all but has gone from glowing white to being black in the center.. I'm happy that the doctor is saying that it's good news but I'm still not understanding what that means in general and what it will mean for what we have to come. If u have any info or even a website that can explain this better that would be greatly appreciated!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Good news it didnt grow. Sometimes that first MRI after treatment starts, is a little confusing because of swelling etc. As for the 3 months, I believe that is with out treatment. As the person before said every tumor is different. No two people are the same. I remember in the beginning looking at everyone that has the same tumor in the same spot as my sister and going on that. But no two were the same.
Eating well,exercising, staying clear of infections and a positive additude are the things that come to mind.
Im sorry that you are on this road, it is a ruff one...Sometimes I thing not knowing to much is better. Im a nurse and I knew more than I wanted to.
My sisters was inoperable we did radiation, temador and avastin.
Brenda

Raani01
Posts: 68
Joined: Mar 2011

Your dad is lucky to have a caring daughter like you. I lost my husband this July. He had less aggressive cancer and at the end we were told it became aggressive, or they didn't care about the grade at that time. As I look back, I felt like the oncologists didn't preapre me enough,My husand had a brain bleed as the side effect of Avastin chemo and I don't remember I was told at any time that brain bleed was a possibilty.I was researching and asking all kind of questions to the doctors. So, be on top of everything. My advice from my own experience is that the time is precious and do things to make your dad and mom happy and collect good memories for yourself. May God bless you many years with your dad, but intentionally making them to be good years is a good thing to do.I am pasting couple of websites:
http://www.savvypatients.com/braincancer.htm
http://www.abta.org/

In braintumor world, each person responds to the treatment differently. As caregiver, the only thing we can do is to learn about it as much as possible, get the best oncologist from a well known clinic, get the best treatment, encourage and support our loved one to live to the fullest with a positive attitude.
Enjoy the good news today with your parents,Let God handle tomorrow's worries.
Take Care!
Raani

Spiely
Posts: 2
Joined: Sep 2012

My beautiful husband of only 2 years had what we thought was 2 strokes but they turned out to be seizures. This lead to CAT scans and MRI and that road has landed us with the horrific diagnosis of Stage IV Glioblastoma Cancer. There are two tumors (one being called a satallite tumor) and it is inoperatable.

I also feel the doctors aren't being 100% upfront but do agree that every tumor grows differently and they have no idea where it will strike next. Our best informant has been our Brain Tumor Navigation nurse (who ever knew these existed before you deal with this) and she has been the best, most upfront so far.

They give my husband less than a year with agressive chemo and radiation which would most likely leave him blink and deaf. He's chosen to go for an alternative theory of a plant based diet whos theory is to starve the tumors of sugar which it seems they need to thrive.

I have my doubts with both scenarios and my highest hopes on the diet. It's all just horribly sad, I try to make each day so very special and will support and love him in his journey.

I wish the best for all of you as I do my husband!! Godspeed to us all on this journey I wish for no one to have to take!!

michral
Posts: 14
Joined: Jan 2003

My heart goes out to all suffers of GBM and their families. My husband was diagnosed on 03/10/2012. We've undergone 6 weeks of radiation and are now on our fourth cycle of chemo (Temodar). To me, this is a living nightmare. I've lost 30+ pounds and wake up with a feeling of dread in my chest. I have 3 children, a son 16, another son 13, and a daughter 11. They are convinced that we will receive a miracle and that my husband will make it. I'm taking the positive route, but some days it is very hard.

Enjoy the time you have and let's all pray for each other for a miracle. I pray to God everyday and that gives me strength.

Michelle

Shmay27
Posts: 8
Joined: Aug 2012

we have now started the second round of chemo in conjunction with lithium and avastin. we recently saw the epilepsy doctor who is taking him off of one of the two seizure medications but this round seems to be hitting him way worse. he has no appetite, very nauseous, very weak, very poor speech and memory. i understand that during chemo things get worse but it seems like he went from 80% to 10% or less which is way worse then the first round with chemo, radiation, and avastin. my father is having a very difficult time dealing with his situation and now is becoming insanely negative and looking up info on hospice and what doctors believe in somehow legally euthanizing him at some point. it is terribly difficult to stay positive when this is all that he will speak about right now when we still have a lot of fight to fight with it only being our second round of chemo. so he is considering stopping treatment now which i no is his decision and only his but it is still very frustrating thinking that there is still so much we can do and y give up now. i just don't no how to really help anymore and I'm there as much as i can be helping my father as well as my mother and helping keeping my 14 year old sisters life as normal as possible. i just don't no how to help more. Im very grateful for everyones responses and advice!! thank you!

Jaxees
Posts: 14
Joined: Sep 2012

Wed, 09/12/2012 - 12:34pm
Brain Cancer & Wheatgrass By
new

http://www.ehow.com/about_5057457_brain-cancer-wheatgrass.html

Brain Cancer & Wheatgrass
By an eHow Contributor

Wheatgrass often has the unfortunate association with health food nuts. But disregarding the health benefits of wheatgrass is shortsighted, since studies have shown time and again that wheatgrass plays an enormous role in enhancing one's health and well-being. Wheatgrass has been known to slow the advances of all types of cancer, including brain cancer. There are a number of reasons for this. Wheatgrass contains a wide variety of properties that have been known to fight and kill all types of cancer cells.

Read more: Brain Cancer & Wheatgrass | eHow.com http://www.ehow.com/about_5057457_brain-cancer-wheatgrass.html#ixzz26HXZit00

http://www.ehow.com/facts_5938480_glioblastoma-multiforme-stage-prognosis.html

Treatment

Doctors consider chemotherapy only marginally effective, although new treatments are developed all the time. Radiation after surgery appears to extend survival a few months, says Cancer Monthly.

Factors

Better outcomes are possible if surgery successfully removed most or all of the tumor. Age is also a factor, says Merck.com, as patients under 45 are more likely to survive.

Sponsored Links
(5) Signs of Depression

These 5 Symptoms Of Depression will Shock You. See the Causes Now!
www.depression.compared-live.net

Survival

Glioblastoma generally has a very poor prognosis, with the average patient surviving just one year after diagnosis, according to the American Society of Clinical Oncology (ASCO).

Potential

While the diagnosis of glioblastoma multiforme is dismal, some patients do survive three or more years, says the ASCO, with research and newer methods of treatment providing hope for longer survival rates.

Newer Therapies

Jaxees
Posts: 14
Joined: Sep 2012

I have done a cleanse a couple of times over the years and swear by them. I have also read of others doing them and healing themselves. One I did back in the early 90s was based on this

https://www.healthquarters.org/index.php?option=com_content&view=article&id=81&Itemid=16

They didn't have a lodge when I did it but I followed her story and also loved the way it felt after a few days of cleansing.
I did 5 days of just water and then went to juicing. I did stay primarily macrobiotic for a few years and then let that slide. Because of 2 very ill people in my family I have once again jump into this. I just purchased another omega juicer and have increased my sprouting, now to include wheat grass- Which is suppose to be amazing for tumour shrinking. I purchased freeze dried wheat grass and froze to supplement while I await the new crops I started.
My mother won't even consider a radical change in diet- she had lung cancer, cleared of that and then about 4 weeks or so ago was told she has 12 brain tumours, spread from her lungs. My FIL is just dx last Monday with IV GBM primary tumour in the thalamus- Drs have different thoughts but all seem to think he now has just a few weeks. He would try this if he had time, but he won't do it now... he is just not in the frame of mind to do this and only this.
Did you try the organic coffee enemas? I did them, it was easy and not frightening like the online warnings about puncturing your colon!

I do believe in fasting for health- again please keep posting!

Shmay27
Posts: 8
Joined: Aug 2012

i find that my father is either severely depressed or extremely paranoid... ive been told that medication could be causing the paranoia as a side effect. has anyone else delt with a similar symptom with a gbm or its medication? if so, any suggestions on what to change or how to approach the situation and give him piece of mind would be helpful.

jaxees- i dont believe my father would be interested in coffee enemas or fasts in his condition now. we dont want to make him any more uncomfortable than he already is but thank you for the suggestion.

moonwitch's picture
moonwitch
Posts: 3
Joined: Sep 2012

My beautiful amazingly strong mom, 48, had a seizure July 2 2012 and was rushed to emergency where they found her brain tumor. She had surgery on July 14 where they removed most of the tumor and was diagnosed with a Glioblastoma stage 4 Aug 15. Started chemo/radiation aug 22 and completed one out of six weeks of treatment when she became incredibly sick. As her caregiver I made her go to emergency, even though she didn't want to. Her tumor had doubled in size since her surgery. They told me my mom had days or weeks left to live. She was in the hospital for 3 days loosing her mind. She couldn't formulate sentences correctly or get out of her bed anymore. She kept talking about deceased relatives and pets in the room. She also told me she would die on sept 11. I decided to take her home with hospice and she passed two days later on Sept 11, 2012. My mom was my best friend, I'm 26 and am happy she's not suffering anymore but I miss her very much. This is an EXTREMELY aggressive disease and the treatment only made her quality of life worse in my opinion. She had a very positive attitude up to her last waking day and I am sorry you have to go through this with your dad. I recommend spending as much time as you can making his life as comfortable as possible. I did everything possible with and for my mom to make her happy and as I look back it gives me piece of mind to know I did all I could.

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