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Brain radiation. Is it worth it?

jagged
Posts: 55
Joined: Apr 2008

My cancer is a carcenoma of unknown primary currently with mets to the brain. They are radiating my brain to maintain my quality of life while I die of cancer, so I don't have sezeres, or oddities, and can continue to drive and be mobil.

I think it is the steroids wacking me out, but unsure. Yesterday I was just a mess. Crying, tiered, couldn't breath, just wanted it over, to die. They cut down the steroid a bit. Today is a bit better.

My goal is quality of life. Is brain radiation worth this given a 2-8 month life expectancy? Is this worth it?

ChristyM
Posts: 38
Joined: Jun 2008

sorry to hear about your situation. I had a anaplastic astrocytoma removed in May of this year. I did recieve brain radiation--my biggest problems I had with it was being extremely tired and not wanting to do anything, I also had some problems with dry skin-try aquaphor, that works really well.
There are good and bad things associated with all types of treatment--however, even with news that may not always be the best, I look at things that there is always a chance. A chance your treatments will work, a chance that things could change, and even a chance of a cure. I guess what I mean to say is dont ever give up!

jagged
Posts: 55
Joined: Apr 2008

Thank you for your comment.

This week was a bunch better. The Doctor decreased the steroid a lot (he said it changed my personality too much), so now we're working on a withdraw. My hope with this radiation is to maintain a level of quaility of life. We'll see. One more week and counting.

As for giving up, yes, there is always a *chance* things will change. But, I strongly believe there is a time when giving up is an ok personal option.

texaswalker
Posts: 5
Joined: Sep 2008

I am so sorry for what you are going through. There tend to be no words that can soften your experience, only experiencing it, understanding how life works sometimes, time, and your spiritual beliefs will get you through this.

I've lost very important people to me in tragic ways, my father to car crash, my mother to breast cancer this May, she went quickly and it was a blessing that she did so. Your comment about giving up being an OK personal option is exactly true in my opinion. I wouldn't say it is giving up, but acceptance of life. I visited the oncologist with my mother to find out she had 3 to 6 months to live, that cancer had completely invaded her body. We looked into each others eyes and I said "mom, I'll do whatever you need and want to do" and she said "I don't want to go to one more doctor appointment, one more scan, take one more pill, I am done" we walked out of that office and she left this world 22 days later. She was so exhausted from 10 years of treatment, follow up appointments and lonliness (that's how strongly she had missed my dad), she was definitely at an acceptance level and was actually eager to let go because she was so tired.

We being human can not help being fearful of the unknown and fearful of being without those we love. Three months following the loss of my mother, now my son who is 14 has a malignant brain tumor. I have cried and cried and cried because I can't imagine him not here anymore, although his prognosis for survival is excellent, when it comes to cancer, I trust it not, although the doctors do the best they can, cancer is sneaky, dark, and sly, I surely do hate that word (cancer), I hate it for any person to deal with it. What I know is none of us are guaranteed another minute, hour or day, that's very easy to say and understand in our minds, not so in our hearts, its as simple as that.

I wish you the very best. Remember that its your body and your life, your choices will be the right choices for you, that's all it boils down to now. :-)

Huge hug from Texas!

jagged
Posts: 55
Joined: Apr 2008

Texaswalker,

Thank you for your post.

I applaud your support of your mother's choice! That has got to be tough, but with so much love and compassion. But now your son, too! What a horrible awful thing this cancer is.

Following my post, I stopped the radiation early by four days. I just could not take it. The doctor was actually very supportive and said I had enough to accomplish what we needed to accomplish. Whew.

--jag

ChristyM
Posts: 38
Joined: Jun 2008

What stage was your sons tumor?

narthur
Posts: 7
Joined: Aug 2008

i was diagnosed with anaplastic astrocytoma in march of this year, also. i had it removed, finished the 6 1/2 weeks of radiation with temodar, then i had a break, i'm currenly on my 2nd cycle of temodar. yes, i agree get plenty of rest,the radiation does make you unbelievable tired, naps are golden! hold on, things will get better, i promise!

cancerfreeinhope
Posts: 2
Joined: Dec 2008

Did anyone have permanent hair loss after the radiation?

I was told by my Dr. that 1 in 1000 would have permenent loss. Guess what, I was the one. A 30 year old female with 2 boys and a wonderful husband with Anaplastic Astrocytosis and no hair on the top of my head. I have "sprigs". I went the Hair Club for men (2 hour drive one way for me) and paid a chunck of money for 2 hair pieces and have made them last for almost 2 years.
I really don't mind being bald until one night I wasn't wearing a wig or hat and my son had a friend over and he cried because I scared him. I was embarassed and felt sorry that I did that to my son.

Please let me know if this has happened to any of you. I'm new to this site.

ChristyM
Posts: 38
Joined: Jun 2008

My doctor told me that there was a good chance I would have some hair that would never come back. Ive also done some research-using hair products with no alcohol in them can stimulate your hair for some growth. I just finished my radiation treatment this July and have had my hair grow back, all but one little area. My doctor said that it would also stimulate my hair to grow more so eventhough I may always have a bald spot Im hoping that I will get enough hair that it will never be noticable.
If you dont mind me asking-when did you originally go through your treatments? How big was your tumor?I had an anaplastic astrocytoma and just curious on how your journey has been.

panther14
Posts: 4
Joined: Oct 2008

I would say having experienced both Cyberknife is amazing but I'm not sure I would do radiation again. The radiation didn't do much for my tumor but cyberknife reduced the size. I had minimal, if any, side affects from cyberknife. I now have a second tumor and can do cyberknife since it is in a different location. I don't know if I'll do radiation again if the cyberknife doesn't work. My theory is also enough is enough when or if it comes to more treatments. I do not believe it is giving up, to me it is the realization that you can't grasp for straws forever.

jagged
Posts: 55
Joined: Apr 2008

Panther14,

Oh thank you for your post. I quite all treatments except for quality of life measures. Thus, this brain radiation. No one is getting out alive. Why deny it to the end? It is so refreshing to find others who share this view.

I have had four years of treatments. As for chemotherapy, my doctor said we could use a drug I had had before and that I might gain one year. Noooooo. It had scrambled my brains for over six months after treatment. Three other drugs did not work. Not only have I given up on treatment, medical treatment gave up on me.

I stopped treatment over four months now. I'm on disability, my mind is clear, and this has been the best time of my life. The doctor just said that I have one month left. I still look and feel fine. What will be will be. I have no regrets.

Thank you for the refreshing views.

--jag

panther14
Posts: 4
Joined: Oct 2008

Jagged,

I'm sorry to hear your time frame the dr. has given you. What type of tumor do you have and where is it located?

I sometimes think I'm being selfish refusing the further treatments. I look at it like you, the quality of life issue. I think about it for my family and their quality of life.

Thanks for your posts.

ChristyM
Posts: 38
Joined: Jun 2008

Jagged, I am sorry to hear all that you are dealing with, and I do support your decision because, as we all are, our own persons and should be allowed to make our own decisions. My prayers are with you.

I know that statistics arent always the best, but that is just what they are-statistics. People can do worse, the same, or better. I myself, am chosing to be a member of the group that wants to do better. Will that happen? Maybe, maybe not. But I know that there are also statistics out there that also go over attitude and determination can make a difference. Does that mean it will help? maybe, maybe not. But I am chosing to be someone who stays determined.
I choose to look at things as why worry today about tomorrow, not knowing what it will bring. I live each day for each day and look forward to each new day that I am blessed with.
I guess what I am trying to say, is to each their own. We should all do what makes us feel satisfied with our lives,and makes us happy and that we should all support and encourage each other to make the best out of each day.

Mannie
Posts: 51
Joined: Oct 2008

I think deciding whether to continue with treatment or not depends a lot on life circumstances. When I met with an attorney a few days after my diagnosis to make my will, power of atty, and living will the attorney said that he never had anyone say that they want antibiotics, blood, life support measures, surgery, and so on and so forth. I told him that I might change my mind when I'm 50 yrs older but for right now I'd like to do everything I can to stay alive. Where a person is in their life and what's going on strongly determines a person's desire to start/continue treatment or not. I fought hard and never doubted for a second that I wasn't going to be fine. I have a lot going on and I'd like to stick around for it. Cancer treatment does wear a person down and trust me, there were plenty of days I wanted to die but I knew that it was just a passing thought or emotion and not what I really wanted. In 50 or 55 years I know my life circumstances will be very different and I can assume that what I choose to do will be different also. I was very sick, like everyone else with a brain tumor, and was not expected to live this long. In my case, my really aggressive treatment saved my life. If it comes back, I don't know what I'd do. I don't know how I'd handle anything life throws at me until it happens.

jagged
Posts: 55
Joined: Apr 2008

Mannie,

I applaud your determination. I also applaud your understanding there are options and not everyone picks the same option.

I may be a bit radical right now. In my State, there is an Initiative to provide a death with dignity option. I wont be here to have that option (and probably would not use it), but I believe death is an important option to have. With this cancer, I explored suicide. Somehow, just knowing this option existed helped me get through what I needed to get through. It is almost impossible to kill yourself right. You throw up pills. Carbon dioxide poisioning is out because of all the auto emission controls.... If someones opts to die, allow them do it right!

Ok, off my soap box.

--jag

Houston-TX
Posts: 2
Joined: Oct 2006

My dad went through the same thing as you. Your brain is the core of your body. When you take steroids and undergo radiation, it's going to screw with your chemical balance. Your going to have good days and bad days ... that's just the way it is. When you have a bad day, take a walk or sit by a window ... think of all the good and try to forget all the bad.

They gave my dad 3-5 months to live at best. He passed away on April 17th after almost 19 months of chemo and radiation. Till the very end he always had a smile on his face and kept a positive attitude.

Hope this helps ...

panther14
Posts: 4
Joined: Oct 2008

I just finished my Cyberknife treatments on Friday. I was also put back on steroids, I hate the thought but I feel lucky that I only have to stay on them for 9 days. The Cyberknife is amazing, if your facing the unoperable tumor please check with your dr about this procedure. I'm very luck to only have to travel 30 miles. If I was faced with more traveling what I know now would convince me to do it.

Jagged - personal e-mail me at mcosens@madrid.k12.ia.us I'd like to talk more

Diane03
Posts: 42
Joined: Jun 2008

Hi-
Not sure if you now, but Jo (jagged) passed away Saturday- I will surely miss her wit and support. She was an inspiration to me.

ChristyM
Posts: 38
Joined: Jun 2008

For letting us know about Jo. While we didnt always agree on our beliefs, I know she was a great person and I respect all of her decisions on her long journey of battling. She was a true warrior.
God bless you Jo, rest in peace.

TammyLouBob
Posts: 18
Joined: Nov 2008

I think it all depends on who you are and what your situation is.

IMO, in a certain sense, the brain radiation is not for you...it is for your family.

It's just not good for them...at least I don't think it is...for them to witness you dying in a catastrophic sort of way (seizures, etcetera).

I know that I have an odd way of looking at things...but, that's my 2 cents.

Tammy Lou

SF
Posts: 2
Joined: Jan 2009

This is a very well thought out and reasonable question. My brain tumors were from metastatic breast cancer. I had whole brain radiation which did not work but gave me all the side effects. Six months later I had radiosurgery which did work with a lot less side effects. For any brain radiation, you will need steroids to control the swelling of the brain. They do have some side effects but do give a lot of energy. In your situation, it is a hard decision but I think I would try. When my tumors were found they were causing me great dizziness and loss of balance, as they increased, I could not move my head or body. So if you are thinking about quality of life, maybe ask your doctor what part of the brain will the tumors press on as they grow. If it is not an area that will greatly change you, maybe it would be better not to have radiation. Hopefully I am not making matters worse but rather giving you some more information to help you decide. God bless. SF

ThaRay
Posts: 8
Joined: Feb 2009

I initially posted this on another subject board but it was suggested that I repost here (thanks again Joe!).

Since the original posting I am now able to identify the locations: mets to front right and left rear hemispheres as well as frontal lobe and smaller tumors down the center.

"My day was spent online researching the subject of brain metastasis and now ends with my posting to this board - so lucky to have found it!

In May 2008, my sister started chemo treatment for NSCLC. She missed four full doses of treatment because of low blood count. In January 2009 her oncologist started her on a new regimen. In February her lung tumor became more dense. Other symptoms prompted an MRI. The image showed multiple brain metastases. This Monday she is due to start 17 daily 15-minute sessions of radiation: 14 WBRT treatments the final three SRS.

I know that treatments are specific to each patient but I'm wondering if anyone has information to share on recent radiation treatments? Following radiation treatment, her oncologist will place her on a more aggressive chemo treatment (drug type has not yet been determined). Also wondering about how the delay in chemo in order to begin radiation will affect her?

The family so hopes for the best and that is our usual direction of thought."

Tha

Diane03
Posts: 42
Joined: Jun 2008

I just finished 2 weeks of radiation. They did not stop my chemo in the interim. I have lung,adrenal gland and now brain.
It's the steriods that make you a little nuts. I tolerated the radiaiton with minimal effects. Some confusion and nausea. My eyesight is shot, but hope it will return.

ThaRay
Posts: 8
Joined: Feb 2009

I appreciate your post - thanks for sharing! My sister too had a few of radiation's companions - dizziness being the most troublesome. I hope that your symptoms are waning and that your vision has returned.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

ThaRay, I also have lung cancer mets to the brain - I was on a clinical trial drug for 2 years that did wonders for my lungs but failed to keep the cancer from traveling north :P I had surgery to remove the largest spot from my parietal lobe, followed (after a short period of recovery) by 20 whole-brain radiation sessions, and then 5 Tomo-Therapy sessions to focus on the remaining spots.

I had a lot of fatigue - I was also on steroids and anti-seizure meds as a precaution following the surgery, so my experience may differ (I had a series of 40 lung radiations in 2006, and I don't remember being quite so tired all the time). Like Diane03, my eyesight has worsened since the radiation. The radiation oncologist gave me the standard talk about how some studies have shown some short-term memory problems occurring later on, but she also stressed that these studies were done on the very people who WOULD tend to have short-term memory issues - eldertly post-menopausal women...I can't say that I've noticed my memory has been any worse than usual. That's not saying much :)

When I had lung radiation, I was having chemo at the same time, but it may be different with brain radiation; this time my oncologist told me to wait until I had recovered a bit before starting Tarceva. The whole-brain radiation caused a rash/dry, flaky skin on my forehead as well as making my hair fall out. Doctors may reccommend Eucerin to deal with the rash, but I found plain vaseline to do a better job.

The best of luck to your sister, ThaRay.

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