Nov 21, 2013 04:47PM mandymoo wrote:

chegushe, I am sorry for not replying to your thread sooner, but I have been a little bit busy and missed your message.

Your mum sounds like an amazing woman if she has been fighting this dreaded disease since 1989!! What an inspiration. However, it must be draining on you and those around her.

I haven't heard about IT topotecan, but I am hoping that someone will reply to your answer. Have you also checked the Brain Mets Thread? It might pay to also post there.

Let us know how your mother gets on with this treatment as it may be helpful for others in the future.

Cheers

Mandy xx

Apr 4, 2014 11:46AM Janlee5802 wrote:

I am new to this thread.  I learned that I have LM yesterday evening.  Is there anyone out there that can help me?  My onc said it's out of his scope and is suppose to refer me to a specialist in Chicago.  The internet doesn't have very much positive info.  You have given me a glimmer of hope.  Anyone?  Please?

Apr 4, 2014 04:59PM Janlee5802 wrote:

Thanks Mandy.  I did look up Valerie after recalling her on Dancing With the Stars and she's still going strong.  I am so scared of what is happening to me.  I have an appointment with a neuro-oncologist next Wednesday for an evaluation.  You are the only person that has responded.  How did you learn your diagnosis?  I'm not ready to give up and I want desperately to live as long as possible.  My husband can't stop crying nor can my daughter.  I can't bear to see them in pain.  I can't tell them it'll be ok.  How did you cope and what were you originally told by the doctors?

Apr 6, 2014 09:16AM Janlee5802 wrote:

Mandy,

I was originally diagnosed in November 2008 and was NED until last year in May.  In April I experienced upper back pain along with nerve twitching and spasms that came out of nowhere.  I was unable to sleep in my bed and slept in a recliner.  In April, my onc did a bone scan that had suspicious results so an MRI and PET were prescribed.  Once finishing the MRI and waiting for the PET, my onc's office called and said to come to the office immediately once finished with the PET.  Minutes later, another phone call instructing me to go directly to radiation at the hospital.  At the hospital I learned that cancer was in my spine at T4 and T6, left 8th rib and a spot on the right pelvis.  T4 was the worst and they wanted to start radiation right away.  I was told to get lunch and return so they could map me out.  Well, the story changed again after lunch.  A neurosurgeon looked at my images and said surgery was needed or I risked paralysis.  I was admitted that Friday evening and surgery was done the next Tuesday.  I had a thoracic fusion.  The totally removed T4 so I have a spacer, rods, posts and screws holding my spine together.  I went through Faslodex - more progression, afinitor and aromasin - more progression.  I am also BRCAII positive.  I was then put on cisplatin and the enlarged lymph nodes shrunk as well as the lesions in my pelvis and rib.  That was in January 2014.  I started having headaches about the middle of February but I attributed them to stress.  End of February we went to Mexico for my birthday and my niece's wedding.  Experienced a headache for 2 days - blamed it on stress again due to family drama.  After we got back home, I again had intermittent headaches and they felt like sinus headaches.  Pressure behind the eyes, temples, cheeks were tender, occasionally teeth were achy.  Doc sent my for a brain CT scan which came out clear.  Last Monday I experienced a headache that was the worst in the world, couldn't get out of bed, vomiting, ears whooshing, neck stiffness, couldn't bring my head forward at all.  Doc wanted me to go to emergency but I wanted to wait until the following day.  Went for an outpatient LP on Wednesday.  Doc called Thursday evening and gave me the bad news.  Today I woke up with pressure behind the eyes and vomited.  so very depressed and wondering if I'll make it to Wednesday's appointment.   

Apr 7, 2014 07:32AM Janlee5802 wrote:

Hi Mandy,

The twitching has been there since the back surgery last year and I've been taking gabapentin which helped.  I'm not on any meds for the headaches right now.  Yesterday I woke up with pressure behind my eyes and a headache.  I vomited shortly after getting up.  It lasted all day.  My husband called the specialist this a.m. to see if we could get in sooner and he will see me today.  We don't have all the imaging that we need but he wants to lay his eyes on me, check through my eyes to see if there is pressure on the optic nerve.  Worst scenario, they will admit me to the hospital today.  Who knows when the cancer cells took up residence in the fluid.  I just know that my PET in January showed remission in nodes, pleural effusion, and bone lesions.  Thank you so much for communicating with me.  You are the only one that has been able to help me.

Hugs to you!

Janet