whole brain radiation

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12/19/2013 9:52pm
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Replies: 14

My mom went into the ER this morning due to extreme pain. They gave her a shot of diladid for pain and it helped. Her doctor ordered an x ray to see what is causing pain in her back. He said it is probably tumor related. We will know more tomorrow when the doctor Looks at the x ray. She talked to another doctor today which said that they can't do gamma knife or SRS on her brain because there is just too Many lesions in her brain. Her only option now is to o whole brain radiation. Her doctor said that she will probably only have a couple weeks left. I just don't believe that. last December he said three to six months and that was a year ago. I am concerned about what the whole brain radiation will do because she already has swelling of the brain and that is a side effect of the radiation. I just don't know how much more swelling she can take. She does not want to go on hospice because she can not do anymore treatments. She wants to do this on her terms and keep fighting until the very end. This has been and continues to be a very rough road for her. It is an awful thing when you get used to hearing bad news. If anybody has advice or bits of what yo expect it would be great.

hdelancey23 - (12/19/2013 - 9:55pm)

I want to add that she is still hoping that the anti Pd1 will come out for compassionate use for people with brain mets hopefully after the first of the year.

awillett1991 - (12/19/2013 - 10:11pm)

I want to thank you so much for updating us on your mom. She is such a strong warrior and has encouraged me often along the way.  I Believe so much of her strength came from thinking of her daughters upcoming Hawaiin wedding.  Not sure if that is you or not.

I am not an expert but I believe that WBR cannot be repeated, I think Denise already had it once. Others on here would know better. It's such an awful time of year to go through this, I will continue to pray for peace and healing for you all. 

 

Amy

hdelancey23 - (12/20/2013 - 12:13am)

That is my sister whose wedding is coming up in Sacramento in march. I pray she makes it to that. If not then I know she will still be there in spirit. I believe that the doctors said said she can do wbr once a year and it has been a year since the last one.

Swanee - (12/19/2013 - 11:32pm)

I have the utmost respect and admiration for your mother, she is a true warrior against melanoma and continues to be strong and defiant in her battle,  she has taught us so much!  Thank you for your continued updates of your Mom, Denise.   I guarantee you,  that the small number of replies does not begin to equal  the number of people on this site that have followed your Mom's journey, who have loved, prayed, hoped for and supported her for a cure or remission.....and we continue to hold her close in our hearts.  

Swanee 

MoCedar - (12/20/2013 - 7:18am)

Heather, I do agree with Swanee. Many followers of this site hold a special place in their hearts for your mother, Denise. Even when she was suffering she was always there to help anyone who asked with encouragement and advice. Her courage has always been an inpiration to me. Please let her know how much we are cheering for her success. 

Fen - (12/20/2013 - 7:36am)

Your mom is an inspiration to all of us.  Her generosity and caring come through in every post.  Prayers for you all at this difficult time.     Fen

POW - (12/20/2013 - 8:22am)

Heather, thank you so much for updating us about Denise. Although my heart breaks for her and for you, I want to continue to support you both in any way I can for as long as I can.

I'm afraid that it is true that one can only receive whole brain radiation once in a lifetime and Denise got WBR last year. Any more would kill her and/or render her a vegetable. WBR seldom "cures" melanoma. It only shrinks the tumors temporarily and they eventually come back. That is what happened to my brother and seems to be happening with your mother, too.

When my brother was first diagnosed he was already Stage IV with mets all over his body, including his brain. The radiation oncologist at the time (the one who recommended WBR) said that even with WBR my brother would only live 8-12 weeks; without it he could die any day. My brother and the whole family were paralyzed with shock and dismay. We were in no way mentally, emotionally or legally prepared for his life to end so suddenly. It was awful!

However, the radiation oncologist didn't know about the then newly-released Zelboraf. My brother had WBR followed by Zelboraf and his condition improved markedly. He had 6 months where he felt good and behaved normally. Eventually, his melanoma became resistant to the Zelboraf, he couldn't get into any clinical trials because he had active brain mets, and there was nothing else they could do for him. He passed away 10 months after his initial diagnosis. 

While the last 2 months were extremely difficult and heart-breaking, I was at the time and continue to be extremely grateful for the extra 6 months of good quality of life that my brother had. It allowed us all to adjust to what was happening. We were able to have some really good times and some really good conversations. My brother was able to get his affairs in order and find his important papers (power of attorney, will, car title, life insurance policy, etc.) so that by the time his brain mets started to interfere with his ability to speak and write, all that stuff was done.  

I guess what I am saying is that, with the wisdom of hindsight, I try to focus on appreciating the extra 6 months of good quality of life my brother got beyond the original predictions rather than focus on his untimely end. I hope that you will be able to do the same.

Please give Denise my warmest regards and tell her that I continue to thiink about her and pray for her every day.

hdelancey23 - (12/20/2013 - 11:20am)

Thank you POW.  I do cherish very much these last two years that we have had to be able to adjust and somewhat prepare for the inevitable.  I do know that there is no way to prepare for something like this and that it will be the hardest thing I have ever done to lose my mom.  I realize the blessings however in these last few months that we have had a chance to get closer to her and have a few more memories to hold on to.  I don't know if she has talked to the doctor that will do WBR but it sounds like they will be willing to do it.  I do think it will be very hard on her body and could be her last ditch effort to keep fighting.  I understand that it causes swelling of the brain which I don't think her brain can handle it.  However I know that my mom wants to die on her own terms and I think that even if WBR kills her I think she would want to go out fighting like hell.  I hope that her doctor explains fully all the risks associated with the radiation and that she understands what could happen, which I am sure they will.  I will post again after I hear what the doctors say.  Thanks to everyone for your support and knowledge that you share. 

POW - (12/20/2013 - 11:55am)

If your mother does decide to have another round of whole brain radiation, some recent reserach says that giving the patient a drug called Bevacizumab (trade name Avastin) after the radiation can  help to prevent radiation damage to the brain. Be sure to discuss this with your radiation oncologist.

hdelancey23 - (12/20/2013 - 1:55pm)

Thank you. I told my mom about this so she can speak with the doctor about it

casagrayson - (12/23/2013 - 11:09am)

I haven't been on this site for a week or so.  I'm sorry to hear that your mother is having such significant pain ... I hope they have figured that out and she is pain-free at this time.  She is such a sweetheart and so genuine in her concern for everyone else.  Please continue to keep us posted.

Strength and Courage,

Susan

Janet Lee - (12/20/2013 - 6:01pm)

I too would like to add my profound respect and admiration for your mother, Denise. My husband has been battling Stage IV Melanoma since January of 2013, and Denise has always been helpful, supportive, and inspirational all at the same time. I pray for her and for her family during this difficult time. I was also surprised to hear that the doctors are willing to do WBR a second time. Your mom is such a fighter! Hugs and love to you all.

Janet Lee

hdelancey23 - (12/24/2013 - 10:44am)

Update*

My mom has an appointment for consultation for Whole Brain Radiation on the 31st.  So she will probably start soon after that.  Her boyfriend told me she is starting to lose control of her legs and falling alot so they went and got her a wheelchair to get around.  It is so hard to see my mom going through this.  Especially since she is three hours away, that makes it harder because I don't always know what's going on.  Plus I am not able to spend as much time with her or be there for her like I would like to be.  My family is going up to see her this saturday for christmas.  So that will be good to spend some time with her.  She said that she is feeling better now that she is back on Morphine and sleeping better.  I don't know if I posted about her back x-ray but the doctor said that he doesn't see anything in the X-ray.  I don't know if this is correct but if it is something in the bone wouldn't he need to do a more invasive scan than an x-ray to see something?  It was nice to hear that the x-ray was clear.. A little bit of good news is so nice when all you are used to hearing is the bad news.  Anyways Merry Christmas everyone.  I hope everyone has a safe Happy holiday with your loved ones and truly enjoys their time with their loved ones.

aliersk - (12/27/2013 - 11:24pm)

An MRI will be more accurate.  My husband had bone mets to the spinal vertebrae T8-12 which he received radiation for - this didn't affect his mobility too much but he was in constant pain.  He then had spinal compression to the T3 which affected his mobility and he lost use of his legs, bowel and bladder.

CT did show up the mets on his vertebrae but it did not show the other smaller spots.  If she is well enough I would recommend MRI so she can get started on pallative radiation - it did help my husband.