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My husband's journey with brain cancer...update
- Thread starter seaprincess
- Start date
There was a lady who came into my office today who knows of my husbands condition and talked to me about an herbal drink called Mangosteen. It is supposed to be helpful for many conditions including tumor shrinkage for cancer. Of course many products make this claim, has anyone heard of this product? There are so many on the market and I always worry about side effects and drug interactions. She left me several samples. I am curious but don't know whether to trust it.
Again thank you all so much for listening. This battle is tough but my DH is a fighter and I will honor his wishes until he says otherwise. I will keep you all updated as to his progress.
God Bless You All~ Lisa and Ben
Lisa,
Prayers are with you and Ben, and all here on these boards facing cancer in our lives and our loved ones.
Even for those of us who are Easter People, it's still a painful and scary thing to face.I have read about mangosteen, a fruit and its juice, which has lots of different antioxidant properties. Some people can get benefits, and some who use it might never.
My sister (with stage 4 oligodendroglioma type of brain tumor) is taking "turkey tail mushroom" capsules, which my dad believes are helping. After her latest surgery in Jan.'09 with chemo wafer implant, she had lots of neuro deficits. The time is past for her chemo to have dissolved, and she is now improving in her mental and physical capacity and pretty stable. The docs said there is no other chemo to try with her, and probably won't try operating again. If needed they will try Avastin alone (which is not usually very successful w/o chemo), but so far they don't think she needs it.
I can't recommend for anyone's specific situation, but some things that offer hope may be worth trying. Do some online research for alternatives... keep in mind there are lots of scams, but if you have an open mind you may find something that might help.
If our local thunderstorms clear up for tonight, I'll be walking in our American Cancer Society's Relay For Life. Team CureQuest is raising research funds to hopefully benefit my sister, and all of you here!!
seaprincess
Mouseketeer
- Joined
- Nov 2, 2004
Update....well I am not sure if I can handle any more bad news. The last two weeks have been so challanging. We went to Duke and started a new protocol of Etoposide and Cytoxan. Ben did splendidly for almost two weeks. I got a phone call last Friday from my DH complaning of nausea and diarrhea. I rushed home and gave him his Zofran for nausea and Immodium for diarrhea. I hoped it would resolve itself. Instead his condition progressively worsened each day to uncontrollable diarrehea and he was admitted to the hospital on Wednesday night. After being up for 30 hours straight, I collapsed in my bed, but too tired to sleep, if that makes any sense, and thought about what to do. After two days in the hospital and massive amounts of fluid, I am told he will be in the hospital until next week. Now we are faced with a decision as to what to do because this protocol will not work with his body. I am starting to wonder, what do we do now?
If you get a chance please say some prayers, we can use all the prayers we can get.
God Bless you all!!
Lisa
If you get a chance please say some prayers, we can use all the prayers we can get.
God Bless you all!!
Lisa
luvmarypoppins
<font color=darkorchid>I am debating whether to pu
- Joined
- Aug 23, 2003
Contiued prayers for Ben and you Lisa. May God be your strength and comfort.
Mskanga
<font color=navy>Can speak and read 4 languages fl
- Joined
- Feb 29, 2000
Lisa , I so hate that you have to go through this.....it's the worst thing ever to see a loved one going through something like this.
I hate cancer more than I will never be able to say......
major hugs and hang in there ....I know about the exhaustion very well , being completely drained and not being able to sleep....I spent many nights like that with my daughter.
I hate cancer more than I will never be able to say......
major hugs and hang in there ....I know about the exhaustion very well , being completely drained and not being able to sleep....I spent many nights like that with my daughter.
aTasteOfHeaven
Mouseketeer
- Joined
- Apr 21, 2009
I am so sorry to hear what you are going through! It is such a hard thing to go through with your loved ones. My daughter was diagnosed last year at 18 months with a stage 3 Wilm's tumor. I don't know any words of comfort other than I will keep you and your family in my prayers.
(my daughter is currently in remission.)
(my daughter is currently in remission.)
kathleena
<font color=FF99FF>Because everyone needs a Fairy
- Joined
- Jan 27, 2001
Hello
I just wanted to post my thoughts for you and let you know you are in my prayers.
My Mom had a GBM, it was huge by the time they found it. Sounds like in the same spot as your DH's. She also was left with some aphasia after the surgery and we came to think of her overall effect as being like a lobotomy. And then my cousin had one, but it was dx as an oglio at first, then they found GBM behind it. All cancers are awful, and I think brain cancer gives you a double whammy because of how it changes the personality and all of the cognitive functions, aside from all of the illness because of the treatment.
So having been there twice, I have a huge amount of empathy for you and your family. I hope you are taking care of yourself and finding peace in all the times you can.
I just wanted to post my thoughts for you and let you know you are in my prayers.
My Mom had a GBM, it was huge by the time they found it. Sounds like in the same spot as your DH's. She also was left with some aphasia after the surgery and we came to think of her overall effect as being like a lobotomy. And then my cousin had one, but it was dx as an oglio at first, then they found GBM behind it. All cancers are awful, and I think brain cancer gives you a double whammy because of how it changes the personality and all of the cognitive functions, aside from all of the illness because of the treatment.
So having been there twice, I have a huge amount of empathy for you and your family. I hope you are taking care of yourself and finding peace in all the times you can.
luvmarypoppins
<font color=darkorchid>I am debating whether to pu
- Joined
- Aug 23, 2003
Thinking of Lisa and Ben and wondering if anyone has heard from Lisa? They are in my thoughts and prayers.
nana2tots
<font color=purple>2Wild4Disney!Nana's 3 Gurls! ou
- Joined
- May 29, 2003
You know, I was Thinking the same thing, I haven't been on here since we left and come back from Disney, I haven't even posted any of the trip, Guess you know by now that it wasn't as Happy a trip as I had wished. Maybe one day, I'll post. One thing i told my Hubby, he want have to worry about me ever whinning to go back, and you know how a Disney Freak i am, or was.
Anyway, if anyone hears from Lisa, plz post.
Anyway, if anyone hears from Lisa, plz post.
nana2tots
<font color=purple>2Wild4Disney!Nana's 3 Gurls! ou
- Joined
- May 29, 2003
Lisa and Ben, Prayers for u guys, I know what u are going thru, I have been awake most of the nite w/ Sandi on my mind, everything just seems to be going thru my head, I just don't know how much more my Heart can take. Please, if you need anything, plz let me know, You can cry on my shoulder, and i will cry on yours, Hope some of this Chemo will work for him. Take care and God Bless you all.
minniebeth
DIS Veteran
- Joined
- Feb 3, 2006
Lisa, seaprincess, you are in my thoughts and prayers as I have been following your thread too.
seaprincess
Mouseketeer
- Joined
- Nov 2, 2004
Hello Everyone,
I am sorry I have not posted in quite some time. I happened to check the boards tonight and see that several of you had sent some recent thoughts. Thank you so much for your continued prayers and support. The past three months have been a series of ups and downs and sadly things have recently taken a turn for the worse.
In May, we made a decision to go with Hospice to give my DH the best quality of life he could have. After being hospitalized in May, I was not sure if Ben was going to make it home. By a miracle of God, he recovered and enjoyed two months of "normalcy" (without chemo for the first time since July '08). We were able to take him to the beach in June and to Walt Disney World in July.
The weekend we were at WDW things began to change dramatically. Ben was barely able to walk, talk and required a wheelchair, he became weak on the right side and began having bowel and bladder issues. I am so greatful that we were able to make it back to NC without any incidents. I placed a call to his Oncologist and he decided to do an MRI to see what was going on. We first went in for an MRI of the brain. The next morning, my fears were confirmed. More tumors in the brain along with 30% growth of the tumor in the Occipital Lobe. Also, that they saw a spot in his spine on the MRI and asked that we rush in to have a spinal MRI done. We took Ben back in the morning for his spinal MRI. Our Oncologist was gracious enough to call us on the weekend. Sadly, he told us that he now has two more tumors in his spine. One at the base of the neck near the thalamus and the other mid-way down the back which is probably causing the bladder/bowel issues. We sought consult with Oncology/Radiolgy on Monday. They told us there was no hope of radiation for the tumors. It seems like it is just getting worse. The Radiolgist suggested we try a low dose of temodar to see if it might improve his symptoms. After talking it over with his Oncologist, we decided to give it a try. We were told the success rate would be 10-20%, but we knew we had nothing left to lose. Ben started the chemo on August 1. Today is August 12th and I am sad to say they decided to discontinue the chemo as it is not effective and Ben's health is steadily declining.
It has been a horrible week for me. I am now told Ben has between 30-60 days to live. In the interim, his needs are getting greater than we can handle at home. In the last two days he has developed uncontrollable hiccups. A result of the tumor I am told. We have been given Hyperidol however it works for a short time and causes drowsiness. He is lucid at times and not others. His personality has changed with the tumor progression. I keep hearing from everyone, "brain tumors are unpredictable", no kidding! We are in the process of looking for a Hospice Home for care and let me tell you the process is a nightmare. Right now, he is not "sick" enough, meaning, close enough to death, for them to take him as an acute patient. I am told he would be considered a "residential case". What this means in the terms of insurance is a nightmare. I was initially told that oh yes, you have met your deductables and we will cover 100%. Then when the Social Worker reaches out to the Hospice Homes, he doesn't meet the criteria of being "sick enough"//or the 30 days or less until death. It is exhausting. I am so mentally tired and watching someone you love struggle so much is the most difficult thing I have ever had to do. This experience has made me realize how much are health care system needs reform. How much patients and caregivers go through and how life can change everything in an instant.
We have been so lucky to have had a year and several weeks. Selfishly, I want more time with my husband. I think it's normal to feel this way, who plans at 40 to lose your life partner/best friend? I have tried to prepare myself for what is coming next but it is so difficult. I am scared to be alone. I have tried to face my fears at every pass, but alas I am feeling so sad and empty.
If you have a chance to say a prayer for Ben, please do. All I want for him is to be comfortable and pain free. He has fought so hard, never complained and has asked for so little. I just hope that God will show him some mercy.
Thank you for listening to my story. God Bless.
I am sorry I have not posted in quite some time. I happened to check the boards tonight and see that several of you had sent some recent thoughts. Thank you so much for your continued prayers and support. The past three months have been a series of ups and downs and sadly things have recently taken a turn for the worse.
In May, we made a decision to go with Hospice to give my DH the best quality of life he could have. After being hospitalized in May, I was not sure if Ben was going to make it home. By a miracle of God, he recovered and enjoyed two months of "normalcy" (without chemo for the first time since July '08). We were able to take him to the beach in June and to Walt Disney World in July.
The weekend we were at WDW things began to change dramatically. Ben was barely able to walk, talk and required a wheelchair, he became weak on the right side and began having bowel and bladder issues. I am so greatful that we were able to make it back to NC without any incidents. I placed a call to his Oncologist and he decided to do an MRI to see what was going on. We first went in for an MRI of the brain. The next morning, my fears were confirmed. More tumors in the brain along with 30% growth of the tumor in the Occipital Lobe. Also, that they saw a spot in his spine on the MRI and asked that we rush in to have a spinal MRI done. We took Ben back in the morning for his spinal MRI. Our Oncologist was gracious enough to call us on the weekend. Sadly, he told us that he now has two more tumors in his spine. One at the base of the neck near the thalamus and the other mid-way down the back which is probably causing the bladder/bowel issues. We sought consult with Oncology/Radiolgy on Monday. They told us there was no hope of radiation for the tumors. It seems like it is just getting worse. The Radiolgist suggested we try a low dose of temodar to see if it might improve his symptoms. After talking it over with his Oncologist, we decided to give it a try. We were told the success rate would be 10-20%, but we knew we had nothing left to lose. Ben started the chemo on August 1. Today is August 12th and I am sad to say they decided to discontinue the chemo as it is not effective and Ben's health is steadily declining.
It has been a horrible week for me. I am now told Ben has between 30-60 days to live. In the interim, his needs are getting greater than we can handle at home. In the last two days he has developed uncontrollable hiccups. A result of the tumor I am told. We have been given Hyperidol however it works for a short time and causes drowsiness. He is lucid at times and not others. His personality has changed with the tumor progression. I keep hearing from everyone, "brain tumors are unpredictable", no kidding! We are in the process of looking for a Hospice Home for care and let me tell you the process is a nightmare. Right now, he is not "sick" enough, meaning, close enough to death, for them to take him as an acute patient. I am told he would be considered a "residential case". What this means in the terms of insurance is a nightmare. I was initially told that oh yes, you have met your deductables and we will cover 100%. Then when the Social Worker reaches out to the Hospice Homes, he doesn't meet the criteria of being "sick enough"//or the 30 days or less until death. It is exhausting. I am so mentally tired and watching someone you love struggle so much is the most difficult thing I have ever had to do. This experience has made me realize how much are health care system needs reform. How much patients and caregivers go through and how life can change everything in an instant.
We have been so lucky to have had a year and several weeks. Selfishly, I want more time with my husband. I think it's normal to feel this way, who plans at 40 to lose your life partner/best friend? I have tried to prepare myself for what is coming next but it is so difficult. I am scared to be alone. I have tried to face my fears at every pass, but alas I am feeling so sad and empty.
If you have a chance to say a prayer for Ben, please do. All I want for him is to be comfortable and pain free. He has fought so hard, never complained and has asked for so little. I just hope that God will show him some mercy.
Thank you for listening to my story. God Bless.
CarolAnnC
<font color=blue>Caught Smuggling Jello Shot Syrin
- Joined
- Oct 9, 2000
I will pray for your husband, and also for you. I am so sorry for the suffering you are both going through. It makes one question sometimes how God allows these things to happen. But, I can only hope and pray there is a better place where we will find peace and relief from pain and suffering. Hugs to you,, and come visit here whenever you feel the need for comfort and sharing...
zalansky
<img src="http://www.wdwinfo.com/images/sponsors/s
- Joined
- Sep 17, 2003
In many ways I know what you are going through. I lost both of my parents to cancer and we had home hospice for both of them. Do know that once they come in, they are angels. I hope that mess gets sorted out ASAP. I agree this country needs health care reform. No one should have to suffer as you both are right now.
Reading your post has tears in my eyes. I too, am 40 years old and your posta again reminds me how precious life is, how everything can change in an instant - how we need to live for the here and now.
My deepest prayers will be with you, your children and Ben in the coming weeks. I know it isn't much, but I am so very sorry this is happening to you and your family. God bless you.
Reading your post has tears in my eyes. I too, am 40 years old and your posta again reminds me how precious life is, how everything can change in an instant - how we need to live for the here and now.
My deepest prayers will be with you, your children and Ben in the coming weeks. I know it isn't much, but I am so very sorry this is happening to you and your family. God bless you.
JerJan
<font color=blue>I need the sunshine to SURVIVE!<b
- Joined
- Nov 10, 2004
GOD SPEED Ben and God Bless you Lisa. Your post brought tears to my eyes, it has been 13 months today that I lost my husband to colon cancer (he was 49) so I do know how you are feeling. I wish I could take it all away for you (where's that damn wand 
when you need it!?) Some days it seems like yesterday that he passed and some days it seems like an eternity.... I will keep you in my prayers. I just take comfort in knowing that there is a "BETTER PLACE" (that is filled with our loved ones) than the one that we are in now and GOD must need these SPECIAL people with him for some reason that we are not aware of....someday hopefully we will get the answer.
when you need it!?) Some days it seems like yesterday that he passed and some days it seems like an eternity.... I will keep you in my prayers. I just take comfort in knowing that there is a "BETTER PLACE" (that is filled with our loved ones) than the one that we are in now and GOD must need these SPECIAL people with him for some reason that we are not aware of....someday hopefully we will get the answer.
antmaril
DIS Veteran
- Joined
- Apr 1, 2001
My heart is breaking for both of you. I lost my husband (55) to pancreatic cancer last year. Reading your latest post gave me flashbacks to my husband's struggle and what I went through during that time.
Please know that I will keep you and your dear husband in my thoughts and prayers.
Please know that I will keep you and your dear husband in my thoughts and prayers.
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