Cancer in Spinal Fluid - given 6 months
 

I had an MRI on Fri the Onc said that my cancer has spread to the spinal fluid and told me I have about six months. I feel fine no symptoms of what they are telling me. Anyone know anything about this??? Clinical trials, websites, experience?? I am dazed ans confused. A few weeks ago everything was going great then BAM - you have 6 months WOW. Need some feedback and prayers please

Re: Cancer in Spinal Fluid - given 6 months
 

It sounds like you are saying that you have leptomeningeal metastases. (You did not specify what the MRI was of)

There are several here who have done well on intrathecal herceptin ie, herceptin given directly into the cerebrospinal fluid.

Rolepaul is very knowledgeable about the trials going on ---I hope he spots this soon as his info is the most complete and up to date I would think.

His wife was also given only months to live and has done well for years now.

Try to private message him if he does not respond soon.

All the best,
Lani

PS while you are waiting, try this 10 pg long thread: http://her2support.org/vbulletin/sho...eal+metastasis

Re: Cancer in Spinal Fluid - given 6 months
 

I am so sorry. I don't know of any trials but I just wanted to reach out and send you a cyber hug and let you know you are in my prayers

Re: Cancer in Spinal Fluid - given 6 months
 

Lani, leptomeningeal metastases is what I have - good to hear others have done well - need to hear from ladies that are out there. Thanks for the hug! europa

Re: Cancer in Spinal Fluid - given 6 months
 

I'm so sorry. My thoughts and prayers are with you. It really is hard to know what to say. I'm hoping that you will do as well as Rolepaul's wife.

Take care

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,
I texted Paul to visit the board. Hang in there, beauty.
Karen

Re: Cancer in Spinal Fluid - given 6 months
 

I'm so sorry to hear this. Doctors are often wrong and I hope this is one of the cases. I don't have anything else to add except that you're in my thoughts and prayers.

Sending cyber hugs

Re: Cancer in Spinal Fluid - given 6 months
 

Dear Saygoon,
I also don't know what to say but hoping that someone with experience checks in. Has your onc talked about the omaya or lumbar reservoir? Hoping you have a lot of support and love around you.

Re: Cancer in Spinal Fluid - given 6 months
 

Hugs. I'm so sorry. That is a horrible thing to hear. I would definitely get a second opinion as soon as you can. Everyone is different and perhaps the intrathecal Herceptin could be a viable option. I don't have experience with spinal mets, but I am stage IV and was once told I had about three months to live. I was in the intensive care unit and the nurses were arranging transfer to the Hospice wing. I asked for a second opinion, and a radiation oncologist came to visit me at the hospital. Long story short it's now over 2 years later. Doctors can be wrong sometimes and miracles can happen. I will be sending lots of prayers and positive energy.

Re: Cancer in Spinal Fluid - given 6 months
 

Dear Sagoon, my thoughts are with you ! Definitely talk to your doctor if you can get radiation and IT herceptin. It can be done after a reservoir under your scalp skin like a port. Don't lose hope !

Re: Cancer in Spinal Fluid - given 6 months
 

Oh Saygoon. Just when you were starting to feel better. I'm so sorry, but more than that, I want to punch your onc in the nose.

As you have seen from reading the thread to which Lani linked, there is much hope for you. Now that Karen has sent up the flag, I'm sure that Rolepaul will check in soon.

In the meantime, just remember your doctor isn't Carnac and you are not a statistic.

Rhonda

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,
I am sorry that you received this news. The doctor does not have a crystal ball. I am praying for you. Hang in there and fight hard!
Loren

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,
You are in my prayers and in my heart.
Peace and healing,
Cindy

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,
Thinking of you and hope you are able to explore the treatment options that have been so successful for some others.
Best wishes..... Pam

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,

Like everyone else, I'm thinking of you and hopeful you receive some other options very soon. There are a lot of trials going on; if you have the insurance and resources, please push hard for more options because they are out there!

-Julie

Re: Cancer in Spinal Fluid - given 6 months
 

Thanks everyone for the words of encouragement. I did get ahold of Rolepaul and waiting for more info. Now that the shock is wearing off a little I am definitely going for IT Herceptin and reservoir or any other option that comes my way/ Keep the prayers coming ladies Im still crazy!!! But your support keeps me strong

Re: Cancer in Spinal Fluid - given 6 months
 

Karen, thanks for giving me a heads up. I am commuting from Denver to Omaha weekly for work. I got a private message and tried to help Saygoon get up to speed on some of the potential solutions to this problem. Overall, this is not a good outlook if you look at results from three or more years ago. Since then, there has been an understanding that higher dose Herceptin administered directly into the brain or CNS cavity has had some pretty positive results. Susan was not able to survive her disease, but it is appears that the higher dose has resulted in a number of women having their disease stabilize or go into remission in the CNS. Please keep sending people my way as I am in contact with Genentech people that are working on this issue.
As I said in the email to Saygoon, kick in the shin any medical person that says you have six months to live or to make end of life plans. This is a bad situation, but it is one that HER 2+ women with CNS have the right to get treated correctly. I know that how hard it is to change the medical community, but it starts with everyone that has this problem saying they will not accept death as the only alternative.
I solve problems for a living. I solved this problem for my wife for her life. She is in full remission in her spine for 3 years as of this May. The medical community does not know why it works, while I did not know why it would not.
Paul
I hate to lose. Never give up.

Re: Cancer in Spinal Fluid - given 6 months
 

Paula, firstly sending (((((hugs)))) to you as I sadly have no advice to offer but I'm so happy that RolePaul has been in contact with you and know you have a great advocate there so hope his positivity and advice will help you greatly and know we're all behind you. xx

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon, I just wanted to say too that I am thinking of you ... we are so fortunate to have the wonderful people like Rolepaul, Karen, etc on this site ... like Julie says, there ARE options out there.

Tell that doc who told you 6 months to GO POUND SAND!

Carol Ann

Re: Cancer in Spinal Fluid - given 6 months
 

As Rolepaul and others have said, the first thing to do is discredit what the onc has told you How dare he not offer options and hope. Another reason why second opinions, and this board, are so valuable!
Keep the faith