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red on the brain

clifsdy1
Posts: 1
Joined: May 2011

I have finished my Chemo. I go for my PET Scan and an MRI this week. My Dr said to prevent Cancer in the Brain , I need to get this. I have had 2 friend die from this and one in a nursing home. Some of the Chemo nurses said the rad is good. I’m scared, do not want to live that way . Could anyone out there tell me about this and any good stories.

thanks Sharon

BonnieJ
Posts: 2
Joined: Jul 2011

I have small cell lung cancer, diagnosed in April 2011. 4 cycles of hard chemo and 30 radiation treatments and 1 hospitalization completed in 3 months. I am at the same crossroads. I have even been fitted for my mask. It seems that WBR is a 50/50 proposition that gives you a 5% better chance of a lack of metastases to the brain. I do not like what I am reading and am going to postpone this therapy. Anyone out there feel good about WBR or PCI?

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

I was diagnosed with ovarian cancer...well that is where it was found, but it was a rare small cell carcinoma mutation. It is treated like small cell lung cancer. I too am at the cross roads. I am for qualiy of life. Just doing chemo was something that caused angst.

I was healthy prior to the discovery of cancer. The cancer was found by chance...they thought it was my appendix going bad. The tumor removal surgery went well and recovery went well. Even after I was still in good health. Once I started chemo my health began declining. I had a hard time dealing with the fact that chemo was making me ill as well as killing the cancer. And I was doing it to myself.

I do not think anything about cancer makes us feel good. I am having a conversation about the future with my oncologist later this month. My mutation mets, and kills fairly fast. I just finished my chemos and will be scanned soon. Should it still be there or come back soon, I want to enjoy my last days.

Though my family and friends would see my denial of any other care as giving up. They expect me to take ANYTHING that may keep me alive. They do not seem to care what my quality of life would be like.

Which way to go...I saw the WBR on a previous post and wondered if I would ever go there. I personally lean towards no....but that is easy to talk and hard to walk.

BonnieJ
Posts: 2
Joined: Jul 2011

Wow, radioactive34, I can so relate to how you are feeling and am there right now. I am fearful of huge changes to my quality of life and the small but severe ones as well (Memory loss strikes me as huge, but seems to be described by others as small). I live alone and want to stay capable of that. How I live seems more important than how long. Living with cancer is way more difficult than I thought and I want to go to support groups that only deal with small cell not all kinds of lung cancer, but hard to find, so happy with this website. Thanks everyone for your help.

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

So I am officially cancer free....but got offerred the WBR as a preventative. I am going to chat with the radiation doc to see what the big thing is. I doubt it will change my mind. I am still leaning towards no but I will at least chat with them about it.

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

No WBR, preventative, for me. It has too many short and longterm consequences. I am going to be watching the scans, but I doubt I will do much more than palliative care if it goes to the brain.

We all have our points where we stop and let God take over. This is mine. I will live as healthy as I can and pray it does not come back. :) I am ok with this decision. It is freeing.

NKY_Dave
Posts: 12
Joined: Jun 2010

My wife was diagnosed with Limited SCLC in November of 2011. She was given the option of PCI (WBR as a preventative measure) after her 4 rounds of chemo (Carbo/Etoposide) and 30 Rad. treatments to her lung. She only had 1 tumor on her right lung at that time. The radiation and the chemo caused her to go into remission, hence the offer of the PCI. She had a previous professional relationship with her radiologist and trusted him greatly! She chose to do the PCI, and everything was fine from June 2010 until January of 2011. She was diagnosed in January with 2 small tumors in her brain (came in even with the PCI). She had a Cyber Knife procedure that wiped these out. These tumors came back in July as one slightly larger tumor that was to be watched for a couple of months while multiple tumors in her lungs and lymph nodes that also had recurred were treated with chemo. This one turned into 5 significant tumors by the middle of August. Fortunately, the PCI that she was given only used half the dosage of radiation that could ever be given to the brain, so they have given her the other half of the dosage now in the past 2 weeks. She also was put on temodar, a chemo in pill form which has just been approved for sclc in the past few weeks. We are hopeful that this has at least stabilized the brain mets and perhaps gotten rid of them for awhile.

The point of this post is that had she not had the PCI, then she could have potentially used this procedure 2 different times instead of the 1 additional time. Are we second guessing now, no absolutely not! One thing to remember is that the only metric the doctors have for predicting how these cancers will react is a statistical measurement. They use the median as the baseline for their predicitions. This means that 50% react better and 50% react worse. That is why you really can't over-react to any timeframe for living that a doctor gives you. Her doctors have explained this at length to us plus I have a significant understanding of statistics since I am an engineer by profession.

When it comes down to your decision on this, I believe that you can only decide based upon what your heart tells you. My wife and I are Christ-followers and pray about everything. We felt that the PCI was the thing to do at the time (actually she felt that it was and I leave these decisions about how to be treated up to her and support whatever she decides). You have to decide with whatever method seems best to you.

I will keep you in my prayers, Sharon, as you make this very difficult decision! Regardless of what you decide, don't let anyone make you second guess this decision!

Dave

medi_2's picture
medi_2
Posts: 511
Joined: Aug 2009

The way it was explained to me was: All my chemo had worked and I was cancer free (sclc,limited). I was given the choice of the PCI; there was no guarantee I would not get brain cancer, but the PCI is supposed to kill any stray cancer cells that could be floating around up there (something about chemo and the brain barrier). So it gave me a 50% chance of not getting (or getting, which ever way you look at it)brain cancer. My Rad. Oncologist told me there could be side effects, but compared to brain cancer, they were a walk in the park...and I did have side effects a few months after but they seemed like chemo (cisplatin &epotoside) side effects also so I really couldn't say. I am not dead or in a nursing home or babbling like an idiot (some might not agree there) ;). Some of the problems that seem to be side effects of my treatments are also signs of aging. No matter what age you are,your body is always changing and when you do something drastic, yes it will leave it's footprint but I don't think any one person can guarantee what will happen. So I guess it is basically a leap of faith. Whatever your choice it is the right one.
Be well!
Medi

ViewSonic
Posts: 17
Joined: Nov 2010

I can tell you if my wife had to do it all over again, we would definately opt to just have the GammaKnife or CyberKnife procedure rather than WBR. My wife went thru 15 sessions of WBR in January of 2011, and then additional spots re-appear in April and she had GammaKnife done at that time. Radiation Oncs are satisfied with the current results, with most of the lesions gone are reduced in size. However, the WBR has taken a toll on my wife's overall health.

My wife (31 y/o) is currently on disability, her reaction is delayed in everything she does. Her eyesight has dimished, she can no longer see small text on the computer screen or on her phone. She can no longer drive, short-term memory loss, and her hand-eye coordination is way off. These are all side effects from the WBR, docs are saying it will eventually get better and she will re-gain those abilities. She's currently on Crizotinib/Xalkori and doing a whole lot better now after 9 months, but from the time she had WBR to September, her health slowly decline.

I would weigh your options before going the WBR route. Go GammaKnife/CyberKnife if you can. I would ONLY do WBR if there were no other options available.

AlanRinHBG
Posts: 120
Joined: May 2011

I'm in remission with nsclc. It was inoperable. Had cisplatin,etopicide,35 rads, then cyberknife and taxotere. wbr was never offered as a preventative and I wouldn't want it. I have an mri done twice a year of my brain. They always say there's nothing there. haha. If and when there is, I'll opt for cyberknife or gammaknife or whatever the newest best thing is at that time. It could be Proton Therapy, cross that bridge when I get there. I just don't believe in treating something that isn't there.

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