Cancer in Spinal Fluid - given 6 months

[Saygoon]

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

[Lani]

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/showthread.php?t=54229&highlight=rolepaul+leptomeningeal+metastasis

[europa]

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

[Saygoon]

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

[thinkpositive]

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

[KDR]

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

[Lucy]

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

[forher]

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.

[KsGal]

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.

[yanyan]

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 !

[rhondalea]

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

[Lnmum]

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

[Crn]

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

[Pamelamary]

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

[IrvineFriend]

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

[Saygoon]

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

[Rolepaul]

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.

[tricia keegan]

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

[Carol Ann]

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

[BonnieR]

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

[KDR]

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

[Dakini52]

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.

[dchips1]

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

[JillaryJill]

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

[Rolepaul]

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.

[Saygoon]

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.

[Pray]

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

[Mtngrl]

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.

[suzan w]

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!!!

[KDR]

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

[MaineRottweilers]

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.

[Lien]

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

[LaDonna28]

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

[Saygoon]

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

[Laurel]

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!

[Lisalou]

Sending prayers and healing energy

[Saygoon]

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.

[Carol Ann]

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

[Kkmom]

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

Pam

[Pat94]

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.

[sassy]

Many prayers for you and your apt tomorrow. There will be a plan!

[TKasander]

Sayoon,

I'm sorry to hear that you received such heart wrenching news. My wife (NEDenise) was diagnosed with the same thing but far to late to treat it. From my experience, I would urge you to get treatment fast and don't take no for an answer. Remember, the squeaky wheel gets the grease! Don't wait for a reply, make your call the one that everybody wants to solve and not get again.

Ted

[Rolepaul]

Ted,
I agree that Denise did not have here brain mets found early enough and the work done was insufficient to treat her. I wish that she had the same options and outcomes as Nina. As always, I thank you for contributing and know that the loss of Denise is something that has hurt you and others on this board.

Always ask more questions than you are comfortable with. Always make sure that you get the best treatment you can. And never give up.

[Saygoon]

Day three at MD Anderson. I see Dr. Loghin today the same doc you guys have RolePaul. I am anxious to see what options she has for me. Thanks again everybody your posts it mean the world to me. I don't feel so alone. I am having a hard time being so far from home so its nice to know I have a Her2 family!

[Rolepaul]

MD Anderson is a scary place and it is easy to get lost in the corridors. We stay at the Crowne Plaza and ask for the Cancer Center rate. Many of the hotels have a discount for patients. You should ask if you are staying in one. Always see if they can put more appointments into your day so it shortens the stay and you can get home sooner. Tell Dr. Loghin that Paul from Nina and Paul recommended you to see her. Listen carefully as it is important about what she might say to you. I go with Nina during these times as I listen differently than Nina does. Let me know how it goes. We are there on 5/18 if you are going to be there.

[BonnieR]

I hope you have a "listener" with you. And some way to take notes. Or record on your cell phone. I always went brain dead in these sessions
Keep the faith

[Carol Ann]

Saygoon, thinking of you all day! How are you?

Carol Ann

[Kkmom]

Paula,
Been thinking about you and your visit to M.D. Anderson. Keep us posted.
Pam

[evlin75]

I wish you well. I talked to this doctor on the phone but for some reason she was not willing to take on Susan's care. It might have made the difference in Susan's longevity if Mona had been willing to see Susan.
Susan had full family support and we would have made the MD Anderson appointments work, if this doctor would have just agreed to see her.
Water over the dam, I guess, but I am still grieving her loss.
Ev

[Saygoon]

The appointment was a little confusing to say the least. I am back in South Dakota for radiation and then suppose to go back to MD Anderson in 5 weeks. However......I have found that there are several clinical trials available as well. keeping all my options open!

[Pray]

Sending prayers :)

[Saygoon]

Elvin - so sorry to hear of your grief. Doctors play God to much I think. So not putting all my eggs in one basket

[michka]

Saygoon, what do you mean by " The appointment was a little confusing"? An appointment should not be confusing especialy at MD Anderson. I am happy you have several "baskets". I am thinking of you.

[Saygoon]

Well, made it thru the first week of radiation. Still have alot of weakness in my legs but pain level has greatly improved. Will sart "buggin" Dr Lohgin for an appointment. Just don't feel that I can relax until the IT Treatment has started. If anyone know of another doctor that does this, let me know I am willing to do whatever it takes.

[thinkpositive]

Glad you've made it through the first week. I'm thinking about you and sending positive thoughts and energy your way.

Take care

[Saygoon]

Radiation complete. Starting to come out of the fog. MD Anderson FINALLY got me an appointment for two weeks from now. In the meantime......I have an appointment in Austin for a clinical trial that sounds very promising. Onward and upward, not giving up hope however I do have to admit I am getting a little worn out. I know that there has to be a plan for me.

[Rolepaul]

The plan is for you to get better. The plan is for you to show people how to get around this problem.

[thinkpositive]

I agree with Rolepaul! There is a plan for you. You may be getting a bit worn down but that isn't going to stop YOU! You go girl!

[Mtngrl]

Ditto what Paul said. Get well. Thrive. Be you.

[JillaryJill]

Your fighting spirit is admirable.

[Coux92]

Saygoon, I'm praying for your continued energy and stamina for this fight. Rolepaul's word are wonderful inspiration! Be well