sbidalia

To Susan in SF and Fierce Bluebird; My daughter had WBR as well as gamma knife and Stereotactic. She had severe fatigue and hated the Decadron, but its been a couple years now and although she does have some short term memory loss, thats what post-it notes are for. She is still definitely herself, personality unchanged.…

@yszw: I think the main thing was the leptomeningeal enhancement, just as in your mom.(that and the horrid vomiting). They did do the cytology but it was negative and they said that is very common. They first tried lumbar puncture with methotrexate but she hated the puncture and reacted to the methotrexate. So they went…

@ysw: My daughter was diagnosed with leptomeningeal mets. She had no symptoms except intractable vomiting and it didn't even show up on a spinal tap.But those great doctors at UCLA figured it out and raced her into surgery( this is an urgent diagnosis!!) to put in an Ommaya port in her brain and then infused herceptin.…

To Dear Jilly, My daughter was diagnosed with leptomeningeal mets at UCLA. They immediately took her to surgery and placed an Ommaya port in her skull and delivered Herceptin through it to bathe the meningeal tissues in it. After one treatment they were gone but she still gets a dose through the port regularily with no…

Hi, my daughter has brain mets and has had chemo, gamma knife and whole brain radiation. She has been stable now for some time but they recently found a new tumor growing there. They are considering using proton therapy at MD Anderson. I know that some of you have had proton treatments and hope you can answer a few…

Hi Daney, I am sorry there has been no answer to you yet. I think this must be because there are so few patients on IT Herceptin. I may be able to help some. My daughter also has had mets to the liver, bones and brain (not lungs). She is also on Tykerb, Xeloda and Herceptin and she was one of the first patients at UCLA and…

Karen, So so happy all went well. Here's praying that your recovery continues. Are you on steroids? Marilyn

Dear Jilly: Suzanne was at UCLA when she was so very ill with leptomeningeal mets. Her doctors rushed her into surgery for the Ommaya port and she started on Herceptin via that route. I don't know what they had to do to approve this since it was still a very unknown procedure. When she transferred to Cedars Sinai due to…

Karen, thinking of you as you go thru surgery this morning and surrounding you with positive thoughts Marilyn

Learner: Sounds like recovery issues to me. WBR is like being hit by a truck and fatigue is a real problem.. If you are still on steroids that could be causing the problem with sleeping. Maybe your doctor could reduce your dose? or maybe give you some sleep meds? I agree that recovery takes months. But it does get much…

Karen2012: Yes, my daughter Suzanne, deverloped her brain mets from her breast cancer. On diagnosis she had breast ILC with mets to the liver and bones, like you, and then later, to the brain and to the leptomeningeal membranes. She has been battling since Nov. 2009. She had a minor brain surgery to place an Ommaya port…

Hi Karin, I don't know where everyone has been this last week, hopefully enjoying the wind-down of summer and getting kids back to school. But I did want to tell you that my thoughts and prayers are definitely with you as you face brain surgery, radiation and chemo all around the same time! And don't worry about any…

Hi Red Wolf. Just an encouraging note: my daughter started TDM1 on a clinical trial for innumerable liver and bone mets, three years ago and it worked like magic and cleared them all away for 1 1/2 years. And it was the easiest cancer drug ever...just mildly achy the first two days after her first tx. It was our miracle…

Thank God indeed, Mario. So happy to hear this news. My Daughter 's brain MRI has been stable for the last 6 months, and like your wife, has only one small, deep tumor that is not growing. Marilyn

Mario (Marvess) posts under the thread "Intrathecal (IT) Herceptin for Brain Mets. My daughter gets Herceptin thru an Ommaya port. The doctors at Cedars Sinai in LA give it to her for control of leptomeningeal mets she had. When she had a new brain met we asked if they could increase the dose but they clearly told us that…

Chiming in to share my daughter's experience with WBR. She had many tumors which had appeared very quickly and so was treated with 15-20 treatments, I don't remember. It did cause great fatigue for awhile but she did rebound. After four months she had leptomeningeal tumors and she received an Ommaya port for IT Herceptin…

Hi Left My daughter is HER2+ and she started three years ago with liver and bone mets and went on a TDM-1 clinical trial whichwhich worked like magic for a year and a half. After the progression she was off the trial and on Herceptin and Tykerb. Then brain mets-very scarey and she had gamma knife with great results until…

JillThut- My DD had WBR and hair stated regrowing after about 2-3 months. Now, a year later she has a full head of hair. It's gray and curly and fine but looks great and she is happy to have it.

Alesta, my daughter's hair has gradually come back...no longer luxuriant, brown with red highlights but grey and curly. But it's now about 2 inches long and she is very grateful for hair. It's been about a year since WBR. Good luck

Saccharomyces boulardi works like magic. Even was able to stop the Immodium!

Hi Tracy My DD, Suzanne, also was diagnosed with leptomeningeal mets back in about January 2012. And she had just finished WBR. Like you, she also had mets to the bones and liver. Like you, I googled it and also was told by doctors that she had just a few months. She was sooo sick, hospitalized and hard to rouse. The…

It is truly heart warming to hear about the chain of good news MRIs. Congratulations all. I'm sorry to be the black cloud here but my daughters results were not so good. After a much needed stable period this spring and summer, following WBR around Feb., Suzanne's MRI showed a very agressive tumor in the brain which grew…

I'm so sad to hear about Rohm. @imadaughter: My daughter Suzanne swelled up overnight while on steroids for WBR. We took her to the local emergency room and they only wanted to give her an enema!. Wisely, she refused. They also tried diuretics but no luck. She finally just gradually deflated, over about a month. Not a…

Ica52: My daughter is also triple positive. She was started originally on TDM-1 on a trial. I understand that it is now approved for general use. It was very effective for about 1 and 1/2 years then she had a small progression and was thrown out of the trial. Everything after that was in combination with herceptin which…

@asroback: My daughter first received it at UCLA from Dr. Glasby, and now receives it at Cedars Sinai in LA. Both have been wonderful. Good luck!

Suzanne and I are so happy to hear that your wife is doing so well on IT Herceptin. Suzanne also continues to thrive with Herceptin to the Ommaya port with a clear MRI. No sign of meningeal metastasis anymore or brain lesions.She also takes oral Tykerb. I agree with your statement that this is the best treatment right now…

@Diza: I strongly agree with the others...let the doctor know. Not being able to keep anything down is a medical emergency. My daughter was vomiting like that and became dehydrated rapidly which brought on a blood clot in her leg and she was very confused. We raced her to the ER and they tried all kinds of nausea drugs but…

Formygirls: I know what a scary thing this lepto diagnosis is. My daughter, Suzanne, was diagnosed with it in October,2011 and did get very sick indeed. But the doctors pulled her back from the edge, put in an Ommaya port and infused Herceptin directly into the brain and spinal fluid. Now, close to 9 months later, she is…

Hi Mario, My daughter received IT Herceptin at UCLA under Dr. Galespy for leptomeningeal metastasis. There is no longer any sign of this. Sadly she had to change hospitals when Blue Shield and UCLA parted company but she will be starting it again now at Cedar Sinai where they are just learning how to administer it. Neither…

My daughter gets hers both IV for systemic treatment and intrathecal thru an Ommaya port for brain metastasis.