Nov 4, 2013 09:04PM amlg1 wrote:
JGreen so sorry to hear of your friends news.My prayers are with all...Robin so glad your doing better.
Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.
Posted on: Jan 6, 2013 05:54AM
Hi there, I would like to know who has been diagnosed with Leptomeningeal Metastases (also known as Carcinomatous Meningitis) in the brain. What treatments are they receiving and how long since you were diagnosed. I have read through the discussion boards but information is very limited. Thanking you in advance.
Posts 31 - 60 (124 total)
Nov 4, 2013 09:04PM amlg1 wrote:
JGreen so sorry to hear of your friends news.My prayers are with all...Robin so glad your doing better.
Nov 5, 2013 05:48PM mandymoo wrote:
Robin, good to hear about the omaya port not being painful etc. and that the shunt is working and that your headaches are gone. Here's hoping that things will look good for a long time. xxxx
Nov 6, 2013 10:49AM RobinNY wrote:
thank you Mandy and Annamarie. Had my first chemo treatment yesterday and my second one is tomorrow. Hope to get my stitches out tomorrow too!
Nov 6, 2013 06:53PM mandymoo wrote:
Hi Robyn, Great to hear that you will get your stitches out tomorrow. xxx By the way, which chemo are you on now? This sounds very exciting. I was watching a TV show this week with Valerie Harper who also has LM and she is responding well to treatments as well. I am of the opinion that when a celebrity suffers from a debilitating condition, that more research is poured into that area.... just my 2 cents worth and I am Ok with that lol.
Nov 7, 2013 09:04AM RobinNY wrote:
Nov 8, 2013 04:50AM mandymoo wrote:
Robyn, Thanks for that. xx
Nov 18, 2013 09:50PM chegushe wrote:
Im posting on behalf of my mom who is triple negative stage 4 with mets in her bones, liver and now LMD. the LMD came to us as a shock because she was doing so well on the chemo for her systemic mets (which are stable and somewhat improved). so now they plan on putting an ommaya port and starting her on intra thecal topotecan.
ive always got a lot of hope and inspiration from breastcancer.org and i am back for some more. Any of u guys had any experience with IT topotecan? ive read about a lot of women on xeloda but i dont think moms neuro onc is in favor of it as the only form of treatment for the LMD (even tho my mom previously went into remission when she was on xeloda)
my moms been fighting this crappy disease since 1989 and it keeps coming back to haunt us :(
Nov 18, 2013 10:14PM formygirls wrote:
I have had it but mine were given through a spinal tap every time. I had to take steriods for a week with each tx. I did not get the omaya port at that time as my neuro onc was more comfortable with the spinal tap procedure. I cannot add much in terms of SE as I had on the same day as four other chemos which were both IT through spinal tap and IV chemo. I got six txs every three weeks. This was last summer. Good luck to your mom.
Nov 21, 2013 06:02AM JGreen wrote:
I am so sad to say that my dear friend Jenn passed away on October 28th. She was only 45 and had small children and has left a grieving and devastated circle of family and friends who loved her deeply. This disease stinks.
To Mandy, Annamarie, Laurie and others who may have seen the few posts I had made on Jenn's situation, you will remember that she was due to have IT DepoCyt but that her cancer had spread further and she was advised not to continue. She passed away only two weeks later. I struggled with even posting this awful news because I didn't want to discourage or frighten anyone who is battling leptomeningeal mets, but to be honest, you all are having your LM aggressively treated and, sadly and frustratingly, when Jenn was first diagnosed with LM in the middle of August, her MOs told her there was nothing more they could do other than WBR. It wasn't until late September after her husband pushed them and made suggestions of his own that IT DepoCyt was decided on but by the time the docs finally arranged for the Ommaya reservoir, it was too late.
Chegushe, I am sorry to read about your mother's LM diagnosis but if you read back through this thread there are a few drugs that people are receiving intrathecally or by spinal tap so there are effective treatments out there. It is, as you said, a crappy disease.
I am thinking of all of you with love, hope and support.
Nov 21, 2013 07:41PM mandymoo wrote:
JGreen, I am so very sorry to hear this bad news. It came as a shock to me that she went so quickly. Thank you so very much for letting us know how your friends journey continued and also how her husband had to push in order to get treatment. My thoughts are with you and her family. I am writing this with a tear in my eye and realise that life is so precious and we never know what lies ahead of us. Here's hoping that a cure for cancer will be found soon.
Sending you cyber hugs
Nov 21, 2013 07:47PM 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.
Nov 22, 2013 11:55AM amlg1 wrote:
JGreen I am so sorry to hear about your friend,way to soon for her life to end.So sorry.
Chegushe,so sorry for your mom,She really has had a long battle.Haven't heard about the drug she will be on.But all the time there are new ones coming out.Prayers to all.
Apr 4, 2014 02:46PM 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 06:30PM mandymoo wrote:
Hi Janiee5802. Agreed, there is not much positive information about LM on the internet, however, I believe that there are some new chemo drugs that will cross the blood brain barrier. One of them is Xeloda, and I have been on Xeloda since diagnosed with LM in November 2012. (My scan last month showed LM not visible, so at the moment Xeloda is kicking butt for me and the side effects are do-able) My onc has said that he has a couple of patients that are still going strong after 4.5 years. Valerie Harper (the actress/comedian) also has been diagnosed with LM for a couple of years and if you google her name, you will learn some more positive news about LM. There are different variations of LM as well, so, each of us react different to treatment etc. My thoughts are with you and please let us know how you get on.
Apr 4, 2014 07:59PM 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 5, 2014 04:37AM mandymoo wrote:
Janlee5802, I was diagnosed with bone mets only in May 2012 and was put on Aromasin. My tumour markers were going up every month by about 50 until November 2012 when they were around the 500 mark and I was complaining of shortness of breath in ER. Diagnosis immediately was Pleural effusion and I stayed in hospital for 11 days having my lung drained, and of course they did a lot of tests as well. I was also complaining of headaches. CT scan showed mets to bones, liver and lungs as well as brain. MRI to brain, showed 3 different types of mets in the lining of the brain and in different areas of the skull, one of them was in the meninges in the right temporal area. I had never heard of LM before neither, and I was then told of poor prognosis. I went off the Aromasin and straight onto Xeloda. Tumour markers still kept going up for the first 6 weeks (blood tests every 3 weeks) and then they started to go down slowly. The next 6 to 12 months were pretty weird, as I was aware that I could not plan for anything anymore, and this might be my last Mothers Day, Birthday, Christmas as well as celebrating my family's birthdays.
There are now drugs that cross the blood brain barrier, and they have not been around for that long, so the prognosis is getting better. Being ER+ and PR+ gives us a better chance as well.
Have you checked out the Brain Mets Thread as well? How was it diagnosed? Did you have any symptoms?
I hope that you stay strong through this and I know that it is very hard for the family, but give them the positive details and do not look at the research details on the internet as they are outdated and we have newer drugs that are becoming more effective in tackling LM. Like I said, before that up until a few years ago, no drugs were around that crossed the blood brain barrier, but there are now.
Apr 6, 2014 12:16PM Janlee5802 wrote:
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 6, 2014 07:21PM mandymoo wrote:
Wow, so I am wondering if those back pains, twitching and spasms may have previously also been due to LM, but it wasn't evident yet on the scans. Or it has only just surfaced and is rapidly progressing. Did they give you any cortisone for the headaches (and possible swelling in brain region)? That helped when I had the initial LM symptoms. I would call the doctor today and tell them what is happening. ((hugs)).
I was also NED for 5 years until May 2012 when mets were diagnosed in my skull, spine, ribs and left hip and right shoulder. The largest met is in L5 area, but I have had no treatment yet as I have a high tolerance for pain and take tramadol every now and again.
Do you know in what region you have LM? My thoughts are with you and I hope that you get some good treatment very soon that will kick LM's butt.
Apr 7, 2014 10:32AM Janlee5802 wrote:
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!
Apr 7, 2014 06:32PM - edited Apr 7, 2014 06:47PM by mandymoo
Janet, I know we are on other sides of the world and it is Tuesday morning here. I was thinking of you all day yesterday and hoped you might go to ER. Sounds like your specialist will do what he can. I have my fingers crossed for you and hope that you get the right treatment very soon and kick this LM,
I still think you may want to go on the brain mets thread as we'll especially for answers to symptoms and also treatment and you may get more help.
Let me know how you get on with youspecialist and hope that we get some positive news from you on this thread for future sufferers.
You are in my thoughts and prayers. (((Hugs)))
Apr 9, 2014 04:15PM Angelrose wrote:
Just diagnosed with LM today as well as mets to the bones, lungs and liver. I appreciate this thread. It gives me some hope.
Apr 9, 2014 06:20PM mandymoo wrote:
Hi Angelrose, I hope that you get great results from what ever treatment you will be on. Keep us informed as to how you are going. I think that some of the newer drugs do give us hope. All the research that is available is more than 5 years old and does not have the newer drugs. Thinking of you and also Janet. ((hugs))
Apr 9, 2014 09:52PM Angelrose wrote:
I will have that ommaya reservoir put in. Also will start on Xeloda and Tykerb. I will keep you posted.
Apr 10, 2014 12:42AM mandymoo wrote:
Angela, Sounds like a good plan. Here's hoping it will kick LM's butt. xx
Apr 16, 2014 07:38PM mandymoo wrote:
Just thought I would put this inspirational link up on the thread about Valerie Harper even though she did not have breast cancer, she did have LM.
Apr 22, 2014 11:15AM Janlee5802 wrote:
Just thought I'd update you on what my treatment is. I had the ommaya port put in last week Monday and had my first intrathecal injection of depocyt Wednesday afternoon. I will receive injections every two weeks. I also started Xeloda last Tuesday evening for the systemic treatment. Here's hoping that we kick some butt!!!
Apr 22, 2014 06:49PM mandymoo wrote:
Janet, thank you for the update. Sending you cyber hugs. Here's hoping this treatment works. Please keep us informed if you can of your progress.
Apr 24, 2014 02:56PM amlg1 wrote:
Janet,I too have LM,I also had an ommaya port and depocyte almost 3 years ago.I had to stop ommaya after 3months,because I was getting fluid on brain,I had a shunt put in.The good news is It has been 3 years in may that I was diagnosed with Lm.I still go for chemo gemzar and herceptin,2 weeks on 1 week off.I look and feel better than I did 2 years ago.I will be getting my Brain MRI in May ,I am positive it will be good,so hopefully this will give you inspiration.When I was first diagnosed,I thought this is it.It is 5 years altogether when I was frst diagnosed with BC.My prayers are with you.
May 1, 2014 11:10AM Janlee5802 wrote:
Hi Anna, thank you for posting. You are definitely an inspiration. I went in yesterday for my second intrathecal treatment. Three years is amazing!! I hope to be as fortunate as you have been. The goal is to complete 4 treatments and then do another MRI in June. It's good to know that you're feeling better than two years ago. Please keep in touch and let me know how you're doing.
May 2, 2014 10:07PM mandymoo wrote:
Anna, my thoughts are with you, and I agree, I hope your journey will be as fortunate as Anna's. June is not far away so please let us know when you get your MRI results. Fingers crossed. ((hugs))