Leptomeningeal Metastases or Carcinomatous meningitis in Brain
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.
Mandy
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There is some mention about it in our Brain Mets thread. There is a lot more info in the forum her2support.org. I think they have a couple of threads dedicated to the treatments. good luck!
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Thank you tiger, I went through the brain mets thread but I will have a look in the form her2support.org. I am HER-, and ER+, PR+, so would not have thought of looking there. I was only diagnosed with LM on 20 November 2012 and that was the same time that I was advised of other mets in the brain, liver, lungs and bone. The LM is the only one that worries me and I have been put on Xeloda. No radiotherapy and no lumbar puncture, because I was advised that both are too invasive????
BTW how are you coping? Is the treatment working?
Mandy
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Hi Mandy
I am surviving with ongoing chemotherapy capcitabine (xeloda) tablets.
First diagnosed with stage 3 breast cancer in 2008 with reoccurence leptomeningeal metastic brain cancer in Oct 2010, no tumour present, its the fluid layer between my brain and skull that was discovered after 2 minior TIA strokes in Oct 2010 which I recovered from, albeit temporarily lost my speech. The cancer is oestrogen positive so my oncologist recommended by tubes and ovaries being removed and this was done successfully on 17 January 2013.
Its been a tough ride especially when your told you have 6-12 months to live and then go on to exceed this with the help of ongoing good response to capcitabine tablets. Most people look at me in disbelief that I am living with the disease, I stay fit and healthy and am surrounded by lots of loving friends and family that are there to draw stength from. I try to stay positive, occasionaly I let this whole derailment get to me and within a day of crying I pull myself together.
It seems to me that everycase is different, in my case even with the succesful response to chemo I am told that I am likely to live for 5 years but not 10yrs, The biggest side affect for me is that I get extremely tired so I usually go to be early but feel better when I get my 2 week break. So the best way I find is to put this information into a small box and sit on it ..... then move on to living every day to the max. and do things that give you the feel good factor (fgf). Sit and watch funny movies, I have 100 tips for immunity boosting and top of my list is laughter, whether that be smiling at a passing comment or watching funny movies but above all laughing with loved ones.
So onwards and upwards my friend, one thing is for sure, we all live and we all die, its about enjoying the life we are given to give us all great memories.
Good luck all
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Thank you for your input, debluvli. It is refreshing to hear from someon who has survived more than 12 months with LM. It has constantly been on my mind, although I have never had any symptoms regarding any of my tumours, except the pleural effusion. It was because of the pleural effusion, that more tests were done, and I was informed that the cancer was in the liver, and lungs as well as the brain. The final bit of bad news was that one of the mets was LM.....I tried to research on the net, but most of the information was outdated.
I did confront my oncologist a couple of weeks ago to tell him that I am feeling quite anxious about the statistics concerning LM and he gave me more faith by telling me that he had a couple of patients who are still going after 4 and 5 years!!!!! So technology has certainly impoved lately.
Thank you for your input on how you deal with LM and this wretched cancer. I agree, I believe that if you can keep mentally healthy and happy, then your physical health also stays healthy. Wishing you all the best in your journey and yay for technology. xox
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Hi Mandy, I have had mets in the dura lining of my brain (also very rare). Although it is not the same as the leptomeningeal layers, it is still part of the membranes that cover the brain (dura, arachnoid and pia), the last two are the leptomeningeal. I found out about the dura mets in January this year after having very bad headaches, an MRI showed the dura mets extent was over most of the back 1/2 of my brain and in the venus space between the two hemispheres. In Feburary I had 10 treatments of radiation. I am thankful that it resolved the headaches and a bone scan yesterday showed the radiation has taken care of most of the bone mets in my skull. I just wanted to tell you what treatment I was given for the dura mets, and the result. I didn't have side effects. I was given steroids during treatment to control any edema/swelling of brain that may happen from radiation.
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Actress Valerie Harper has been diagnosed with LM. (She does not have breast cancer; she has metastatic lung cancer.)
http://www.medicinenet.com/script/main/art.asp?articlekey=168344
per the article:
Q: What is leptomeningeal carcinomatosis?
It is also called neoplastic meningitis. They mean the same thing. There are tumor cells that are in the spinal fluid.
I don't think I have seen many references to neoplastic meningitis, but might be worth a search...
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Blossoms, thank you for your information. I didnt know which layers of the lining of the brain were involved, so thank you for that. I hope the radiation has done its job and that it is resolved. I have not had radiation yet, only Xeloda and the MRI shows that the mets are shrinking. I am also fortunate that I never had any symptoms, so possibly early stages yet. Have you consulted with your oncologist about Xeloda, as that appears to be the chemotherapy drug that can get through the blood brain barrier. I am not sure if there are any other chemo drugs that can do this.
EnglishMajo, I had a look at your article about Valerie Harper, and appreciate the link as it is very informative. I believe knowledge is power and the more we know the more control we can have over our treatments and care. As I have said before, there are some posts about LM but most are very vague and I believe that these mets will pop up more and more as people are living longer with cancer, and most of the information on the net are before Xeloda.
Cheers
Mandy
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Tykerb also crosses the BBB.
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Mandy no advice but wanted you to know I'm praying for you and glad these other ladies have some answers. Keep your chin up!
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Mandy,
I have leptomenginal mets. I have had six doses of intrathecal chemo through spinal taps for them last summer.The chemos were depocyt and methotrexate. These were given in addition to the systemic chemo.0 -
Thank you to everyone who replied, I really appreciate it and hopefully future people who are afflicted with LM may find this thread useful.
Formygirls, I am interested how long you have had LM and how are you going now.
Scuttlers, thank your for letting me know about Tykerb .
Usafmom, thank you for your kind thoughts and I hope that you are fairing well, also.
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Hi everyone, I am actually posting on behalf of my best friend who is a 45-year-old mom of two. She was diagnosed 08/11 with stage IV breast cancer with mets in her pelvic bone and rib, as well as node involvement. Had a double mastectomy, radiation and chemo.
Things were relatively stable but 10 days ago she was diagnosed with LC. She has since started WBR and is doing OK -- a little fuzzy-headed and tired, but nothing crazy.
My question is this: Xeloda, unfortunately, is not an option as she was on it already at the time the LC was diagnosed. They have since taken her off it. So, what other drugs besides Xeloda are people taking for LC? Scuttlers, you mentioned Tykerb. Is anyone aware of anything else or of any trials (am about to start searching, but would be interested in first-hand experiences).
I am in the midst of making a list of what chemos and other treatments she has done so I don't have the usual, helpful profile for her, but am grateful for any information anyone can provide. I just want to help her and I hope you don't mind my use of these boards.
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JGreen, I am sorry that you have not had any replies as yet. I only just noticed this post today. Perhaps check with the Brain Mets thread. I cannot help out with any other medications or treatment for LC. My thoughts and prayers are with your friend. xxx
Cheers
Mandy
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Jgreen,
If your friend is her2+, herceptin can also be given intrathecally.
Laurie0 -
Thank you for your replies! In fact, she is ER/PR positive and (unfortunately) HER2 negative. She has decided to do DepoCyt administered intrathecally which should give her some extra time. If anyone has any feedback on what she can expect with either the procedure to place the ommaya reservoir or IT DepoCyt, I would be so grateful. She is having some symptoms of the leptomeningeal mets such as bad headaches, feeling like her ears need to pop and, scarily, her legs temporarily giving out.
Thank you!0 -
JGreen, DepoCyt appears to be a very good drug for your friend. I hope that it does the job and that the LM will become "under control" for a very long time. I still suggest that you follow the "Brain Mets" trhead as well as there may be some people who are familiar with this drug.
Cheers
Mandy
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Sorry to hear about your friend.i was dignosed with LM about 26 months ago,I have an ommya port and had depocyte injected for about 4 months,i also had decadron which made my legs so weak.I started with almost blacking out if I sat to long and then got up.That was fluid build up in brain.Finally in Dec.2011 the dr.decided to put a shunt in to drain flluid.I cannot use ommya any more.i am now on gemcitabean.so far so good,feeling good.tell her my story to give her hope,because when I was diagnosed with lepto.over 2 years ago my Dr.told me to get things in order.Once I got off those steroids my legs got stronger.I look like a new person,now and feel like a new person.Agood positive outlook is so helpful.
Hope I was some help.
Annamarie
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amig1, What an inspiration to hear this story. Thank you so much for telling us your journey with LM and this may bring hope and encouragement for some others who have just been diagnosed with LM.
Cheers
Mandy
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Dear amlg, thank you so much for your post. I have forwarded it to my friend. Do you mind telling me where you were treated? Also were the side effects of the Depocyte difficult to tolerate? Did they start the gemcitabean in Dec 2011? Do you take it orally? I am so sorry for all the questions but I am filled with hope after reading your story. I can't thank you enough for this.
One more question: did you also do alternative things like changing your diet or using herbal remedies?0 -
Dear JGreen
I have been treated at Memorial Sloan Kettering.No side effects from depocyte,just the steroids I had to take with it.In 2012 they started me back on Taxol and herceptin,then a few months later put me on Navelbine.for a few months,then Dec.2012 pyt me on Gemcitabine,which is very easy to tolerate.I get it through my port.No problem if you need any answers or help,let me know.Where do you live.i am on Long Island,ny0 -
Thanks amlg, she is in rural Colorado but going up to Denver for a consult with a neuro surgeon shortly to get the ball rolling on placement of the ommaya reservoir etc. She is having some symptoms of the leptomeningeal mets -- shakey legs, numb feet, swirling vision and headaches -- so I am hoping that things move forward on treatment soon. I have forwarded all of your responses to her and her husband -- thank you so much! I will definitely come back with questions. Thank you!0 -
Hi everyone,
My friend will have the procedure to get the Ommaya reservoir on Tuesday and will receive her first dose of IT Depocyt at the same time. Any information on the ommaya reservoir would be greatly appreciated -- is the procedure very painful? Did you have headaches for a few days after? Any other effects I can prep her for?
Thank you!
J Green0 -
Hi JGreen. I cannot help you with this information, but I am hoping that someone can. I do wish your friend good luck with the procedure and I hope that it will work for your friend. My thoughts will certainly be with your friend. Let us know how your friend does get on, please, as I think this information will be very helpful for people who will undergo this procedure in the future. xxx
Cheers
Mandy xxx0 -
Thanks Mandy. I will definitely do that. My son is a cancer survivor (Dx at age 9, now 16 and off treatment for 6 years) and I am a big believer in message boards like this as a way of sharing information and experiences.0 -
ommaya port not painfull at all.Let us know how she is.0 -
Thank you for keeping this thread going and I agree that these message boards are great and valuable sources of information for those people affected.
I hope your friend is doing well. Keep us posted.
Cheers
Mandy0 -
Dear Mandy and Almg1,
Sorry for the delay in getting back to you about my dear friend. I don't have good news and was putting off posting. She went for the procedure to put in the Ommaya reservoir and her MO found that her platelet count was low so the procedure was postponed. In the meantime, she did an MRI and found further spread. The MO recommended against going ahead with the (or any further) treatment and my friend and her husband (both amazing people who have shown incredible grace in the most difficult of circumstances) agreed. From here on out it is all about keeping her comfortable and attending to her emotional and physical health as best as they can.
I can't thank you enough for sharing what you know with me. I wish you much health and happiness, and will not forget your kindness.
With hope,
J Green0 -
JGreen, Thank you for letting us know about your dear friend. I am so very sorry about the bad news and my thoughts and prayers will be with her. Please don't hesitate to communicate or even to vent here if you feel the need. These threads are an amazing way for us to learn and pass on information as well as supporting and listening to each other.
God Bless you and your friend and I hope that you have inner strength and courage to continue to support your friend and her family. xxx
Cheers
Mandy0 -
JGreen...so very sorry that your friend got such bad news. Thinking of you all and sending a prayer and a gentle hug.
Robin0 -
just to let you know I had my surgery on Friday and the headaches are gone! The ommaya port was not painful at all...and the shunt has given me such relief. Looking forward to healing and starting chemo to get rid of the cells in my spinal fluids.
Hugs
Robin0