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

Re: Cancer in Spinal Fluid - given 6 months
 

Getting on the right track after the shock factor is crucial. Best of luck, Saygoon!
With heartfelt best wishes,
Karen

Re: Cancer in Spinal Fluid - given 6 months
 

So many reasons I love this board! There is so much wisdom and current information available. Surprised an onc would say 6 months when it appears you have some more options to explore. Best wishes to you. Hang in there.

Re: Cancer in Spinal Fluid - given 6 months
 

Hi my name is Darita
My mets where wrapped inside my spinal column, if they want to radiate anything in brain or spine you need them to do Cyber Knife More targeted robot arm. Wish I had the opportunity before doing the other way. I was dx stage 4 breast cancer in 2006, back then it was all palliative care. All info out there was dooms day, until I found this site. Like Pauls ending (I hate to lose) it took my almost 2 years to get my onc to jump on board, get omaya placed, have 2 hospitals deny doing it. So with a very large push started It Herceptin eventually @ 100mg IT weekly and 105 IV both no preservatives, started Perjta and taxotere all iv on a cycle, Mri in march showed tumors gone just still some swelling. You just to keep your chin up, technology, advocacy, leads to prayers and changing a "death sentence" into a chronic illness. If no one close to where you live, or Dr thinks your crazy, you may need to contact a larger cancer center somewhere else? Is your primary Insurance BIA? Check and see what they will pay for? My son is Choctaw/Cherokee, and we where told he can go to any clinic, In AZ they also encourage enrollment in the state plans


I had try to post an update to my response website would not cooperate at 300am

Peace and prayers
Darita

Re: Cancer in Spinal Fluid - given 6 months
 

I am so sorry to hear this. I am so glad Rolepaul has jumped in.

Re: Cancer in Spinal Fluid - given 6 months
 

dchips1 is one of the winners. She keeps getting the wrong of the stick and just goes on fighting. All I can say is she does this without having the support that many others do. Keep on fighting and only give up when there is no more breath left in you. And then fight for ten more minutes.

Re: Cancer in Spinal Fluid - given 6 months
 

Again, thanks everyone for the encouragement. Right now I am in the process of getting an appt with M.D. Anderson. Hope they can see me ASAP. Looking forward to exploring what kinds of treatments they can offer.

Re: Cancer in Spinal Fluid - given 6 months
 

Gods blessings to you and your family. You are all in my prayers. There is always HOPE :) Be Victorious everyday :)

Re: Cancer in Spinal Fluid - given 6 months
 

Dear Saygoon,

I just want to add my voice to this chorus of encouragement. Where there's life there's hope. I'm not convinced it's always possible to think ourselves into full physical recovery. I've seen too many people succumb to cancer to believe that positive thinking always "works" in that sense. But I do believe that it's entirely possible to think ourselves into an early grave with negativity. And even if optimism and defiance don't buy us extra time on this plane of existence, they undoubtedly help us make the most of the time we have.

I'm so sorry you got this news. And I, too, would like to smack or kick your oncologist. For what it's worth.

Re: Cancer in Spinal Fluid - given 6 months
 

I have just read this whole thread...unbelievable. Keep up the fight...never give up...never give in. We are WARRIORS on this site...never forget that!!!

Re: Cancer in Spinal Fluid - given 6 months
 

Carol Ann, I LOVE your fire! Saygoon, how are you, love?
Karen

Re: Cancer in Spinal Fluid - given 6 months
 

Paula, adding my prayers to the many who are praying for and with you. There is a always hope. Doctors should not be handing out expiration dates. You'll show this callous onc that he has no business doing so.

Re: Cancer in Spinal Fluid - given 6 months
 

I live in the Netherlands, and here oncs are very, very reluctant to put a timeframe on any kind of cancer. There are so many exceptions, that they just say they don't know. Only when they feel the quality of life issues will far exceed the expected benefit from treatment, will they discuss life expectancy.

As you are not ready to give up, neither should your doc. And if they do, go for second or even third opinions. Hang in there!

Hugs

Jacqueline

Re: Cancer in Spinal Fluid - given 6 months
 

Saygoon,

My prayers are with you as you take on this battle. Keep strong and like one of the ladies said - the onc who told you 6 months needs their face punched! Keep us posted!
LaDonna

Re: Cancer in Spinal Fluid - given 6 months
 

Hanging on to all your words of encouragement. Glad to say I still do not have any of the symptoms that I am suppose to be having. I will feel so much better when my appointment with MD Anderson is confirmed and even better when Im down there and can hear of some options. Its a long trip from South Dakota to Houston Tx but I'm Keeping the faith and my sense of humor so far....the journey continues

Re: Cancer in Spinal Fluid - given 6 months
 

Paula,

Really sorry to hear of your latest challenges. Cancer just sucks! Seriously! What a blessing that we have all these super smart men & women on this site with their knowledge & experience. Thanks to the Druthers for this wonderful site!

Hope you hear back from MD Anderson today and are on your way to getting answers. Limbo is tough on the soul. Hang tight!

Re: Cancer in Spinal Fluid - given 6 months
 

Sending prayers and healing energy

Re: Cancer in Spinal Fluid - given 6 months
 

It was a long trip from S.D. to Texas but my daughter drove. Resting at her house in Ft Worth. MD Anderson here we come!!! Appt Monday. Keep that positive energy coming!!!! Thank God for all of you on this site.

Re: Cancer in Spinal Fluid - given 6 months
 

It is coming Saygoon, from ALL of us. We are rooting for you. I am so glad you have a couple of days to rest from your trip.

You go!!

Carol Ann

Re: Cancer in Spinal Fluid - given 6 months
 

Paula,
Keep it all together. I will be praying for you on Monday and sending prayers of medical healing at M. D. Anderson.

Pam

Re: Cancer in Spinal Fluid - given 6 months
 

One of my great-uncles was diagnosed with cancer & told he had 6 months to live. People in my family are stubborn; he kept living. He attended the funeral of the 1st oncologist and then the 2nd one as well. He did eventually pass away but it was many years after diagnosis. I will keep you in my prayers. Good luck tomorrow.