› Forums › General Melanoma Community › Spread to spinal fluid-leptomeningeal
- This topic has 15 replies, 3 voices, and was last updated 6 years, 4 months ago by
doxiemom.
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- December 23, 2017 at 5:02 pm
Hello dear MRF community, I'm new to posting here. I was diagnosed with Stage 4 in May. First presented mets in breasts. After 4 rounds of Keytruda, it spread to spinal fluid. I then went on BRAF combo, which I couldn't tolerate (ongoing fevers). Next was radiation. And this coming week I'll start the other BRAF combo. Just wondering if anyone else is dealing with the spinal fluid ("leptomeningeal") and it's complications. Thanks.
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- December 24, 2017 at 6:09 pm
I am sorry you are dealing with leptomeningeal disease, Doxiemom. That is tough. There are some institutions (MD Anderson) that are doing intrathecal infusions of IL2 for folks with leptomeningeal disease. Perhaps you could check in with them about that possibility should you need to search further.
I will include this post for you regarding a new BRAF combo, whos outcomes are actually better (at least in this study) than some of the older BRAF/MEK combo's.
I wish you well and hope you enjoy your holidays. Celeste
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- December 24, 2017 at 7:39 pm
If you have been positively diagnosed I urge you to read Adriana's story here https://www.melanoma.org/find-support/patient-community/patient-stories/adriana-cooper and search for our posts as well as SStamps and MaPerny as well as others. Please take action quickly and seriously consider getting an opinion at MDA as it seems that those that are early with limited deficits have the best chance at doing well. I invite you to contact me personally if you wish. Make the most of every moment of life with your loved ones.
Best wishes, Rob
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- December 26, 2017 at 11:44 pm
Thank you, Rob. I just read Adriana's story. I was diagnosed with LMD in August. After 4 rounds of Keytruda the cancer spread from my breasts to spinal fluid. I switched to a BRAF combo in Sept but couldn't tolerate it (fevers). They took me off that and we just did a round of radiation. I just started the other BRAF combo today. I'm being treated at Sloan Kettering Cancer Center in NYC (I live in NJ) but I will definitely explore MD Anderson.
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- December 29, 2017 at 8:20 pm
Hi Doxiemom, I hope you are doing well. I have a few questions if you don't mind sharing to help others in the future when they are researching, if not that's ok too. What precipitated your LMD diagnosis, do you have any neurological deficits? Face drooping, double vision, numbness in your extremities, un-diagnosed explained pain? Did you have a positive lumbar puncture or have you been diagnosed by symptoms or MRI. Do you have any brain mets? What kind of radiation are you having? location. Are they trying to resolve the LMD with that or is it palliative for other locations? As you read Taf/Mek was effective for Adriana even after several reintroductions over 2+ years (I sometimes fear that our decision to take a couple of "holidays" during her last months was not the right choice for her, although I know that it is indeed effective for many. I hope one day I can set aside my questioning of various choices along the way.) She had some issues with fevers on a couple occasions, once up to 104, but were resolved with steroids or dose reduction. I have great hopes and am excited to hear how this new BRAF combo works for you. From reading, it is my understanding that the folks where you are being treated are very knowledgeable. I felt that too at SCCA but I have to say that when we mentioned the treatment at MDA it was dismissed as either a trial or they had no knowledge of it (I found strange as it has been going on for sometime and is off label use not a trial.) Indeed the treatment is a huge commitment as it means moving there for some time unless you are close by and it is far from a guarantee of being successful although I know Mickey Stamps and others have had success for some time, his wife Samantha was/is a great support for me and Adriana, a terrific and thoughtful woman.
Have a Happy New Year, Welcome to 2018 to everyone. Yeaaaaa!!!
Rob
Celeste, doing OK thanks. Best wishes to all.
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- January 4, 2018 at 5:41 pm
OK. Hopefully, third time is a charm. . .Background: I'm a 53-year-old female. Two tumors were found in my breasts (one in each breast) during a routine mammogram in April 2017. After ultrasound and biopsy, I was told on May 4 that the tumors were melanoma. Immediately, I contacted Memorial Sloan Kettering Cancer Center (MSKCC) in NYC since they have melanoma oncologists and are well-known for advanced cancer treatment. First we saw a surgeon, thinking they would just remove the tumors. But he explained that I needed to be treated systemically since the melanoma had moved beyond a primary site (which remains unknown; although, we suspect a “premelanoma” that was removed from my back in 2008. The surgeon explained that I was at Stage 4, and he referred me to a colleague, a melanoma oncologist, Dr. Michael Postow, who would discuss immunotherapy options with me. I am currently being treated by Dr. Postow and neurologist, Dr. Alexandra Miller.
I started Keytruda at the end of May and had four rounds of treatment before having another scan in August. The scan revealed that the original two tumors were gone, but a new one was found in the breast, but most concerning was that the melanoma had spread to the spinal fluid. I had a spine MRI revealing extensive activity (inflammation/cancer cells), a brain MRI (which was clear), as well as a lumbar puncture, which confirmed the leptomeningeal spread.
I stopped the Keytruda treatments and was switched to BRAF meds (as I tested positive). I started with the TAF/MEK (dabrafenib & trametinib) drugs at the end of August. I was on and off the drugs for a month – experiencing fevers, rashes, severe neuropathy. . .basically I had a toxic reaction to the meds, so they took me off at the end of Sept.
I was on steroids to help with the inflammation/nerve issues from the leptomeningeal disease – neuropathy in legs, feet, sore neck, headaches. Unfortunately, I ended up with steroid-induced psychosis and spent about 45 days (end of Oct through beginning of Dec) in a cognitive/short-term memory deficit fog [more on that later if anyone’s interested].
Fast forward. . had another MRI on Dec. 7, which revealed disease progression in the lower spinal area. I was admitted to MSKCC hospital for immediate radiation treatment. I had 10 rounds of radiation – from the tailbone to the mid back. This was possible because I was in between targeted therapy treatments; apparently, it’s not advisable to do radiation and targeted concurrently.
Right after I finished the radiation treatment, I started the other BRAF targeted therapy: vemurafenib & cobimetinib. I’ve been on it for 10 days. So far, so good.
To answer your specific questions:
(1) What precipitated LMD diagnosis: scan/MRI revealing activity in lower spine; confirmed by lumbar puncture
(2) Neurological deficits? Yes, neuropathy – feet (numbness, burning, tingling—although, I’ve had this since early on after starting Keytruda), legs/arms (pinging, pulsing), hands (numb); balance issues; muscle weakness, soreness-(particularly legs – slow gait, hard to go up stairs, get up off the floor, etc.); dizziness (on and off when getting up from a chair, bed, car after long drive); blurred vision (although I’ve been experiencing this for months and I think is due to steroids and also it’s a side effect of new BRAF meds). I also had severe neck and back pain before radiation treatment. And, last but not least, I had a “seizure” a couple of weeks ago due to intracranial pressure from the spinal fluid. . .the other issue I have to be aware of is bowel and bladder function, as the disease goes down to the tail bone, and it or associated inflammation can cause issues. That’s one reason I’m still on steroids, I believe.
(3) Trying to eradicate melanoma or palliative? At this point, trying to eradicate (I believe, although, I haven’t actually asked doctor if he’s just treating me palliatively).
Hope this helps others. I’m happy to answers any additional questions anyone might have.Best, Carrie
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- January 8, 2018 at 4:45 am
Carrie, Thanks for sharing your story. When we were going through this I found very few stories with much details to be able to make comparisons, see what treatments others had tried and results of those treatments.
Many of your experiences line up with Adriana's regarding the pain in your legs, neck and head. She also had lumbar radiation in addition to her WBRT. As you read she had substantial side effects from the lumbar radiation which took some time to get under control.
Her BRAF drugs were also halted for several weeks during her radiation treatment. I was very anxious about this and was very happy when she was able to restart them and indeed started regaining her mobility after restarting them.
The blurred vision (Adriana experienced double vision for quite some time and got some temporary prisms to correct after using an eye patch) is not uncommon with LMD in my research.
I know others have had a shunt placed? to reduce the intracranial pressure.I really hope the new BRAF drugs are successful for you in a long lasting manner or at the very least will provide you some additional time in order to pursue other treatment options should you choose to.
If you haven't yet I urge you to get any palliative care folks involved if they are available to you. They were very important to us and provided us with tremendous support throughout our last several months. Please don't take that to mean that they are just there for folks at the end of their life, they are there to help everyone and provide many pain and comfort options.
Please let me know if I can be of help in any way now or in the future either on here or privately through email or phone.
Please do continue to share your story here as much as you care to. I have found the help and support here to be invaluable and consider these folks to be like family.
Rob
Go make memories. Work to live, don't live to work.
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- January 4, 2018 at 11:08 pm
Oh, Carrie. So sorry for all that you have endured. I am going to hope that your new combo post radiation will be helpful. Melanoma sucks. LMD makes melanoma look like a walk in the park. Dr. Postow has an excellent reputation in melanoma care. There are many kind caring people on this board who can lend an ear and offer support should you need. Hang in there. Yours, celeste
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