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Has anyone received intrathecal topotecan for LMD

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Has anyone received intrathecal topotecan for LMD

Posted By
11/18/2020 5:41am
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Replies: 3

So about 16 months after brain mets, craniotomy, Srs, opdivo/yervoy x 4 and opdivo alone x 4, getting to NED, I now officially have LMD.

I have 2 obvious, visible tumors in my spinal canal. One has been "debulked" by my neurosurgeon because the pain was so severe. Now going to be treating both the tumor targets with radiation.

I am Braf + (I attempted taf/mek when I was first diagnoses stage 3 in 2028 but didn't tolerate Mek at all and did a lower dose of tafinlar for a year) so I am being started on braftovi/mektovi.

My neurological symptoms currently are mostly manageable. I was hospitalized about a month ago with severe headache, dizziness, leg weakness, nausea -- at the time they couldn't find anything but now more clearly symptoms of the LMD.

My neuro-oncologist in NJ did his fellowship at MD Anderson and is suggesting IT topotecan. I can't find much data on it used in melanoma (although it is documented that it has been used) but it's well documented that it's effective for LMD from breast cancer. My primary melanoma specialist does not like this idea and has put the idea in my head of a trial they are doing at MD Anderson with IT opdivo. It's only a phase 1 and has less than 50 people in the study so there's really no information about what is the "best option".

I am 37 years old and have a 6 and 4 year old and will do EVERYTHING that I possibly can to be around as long as possible. I know LMD is so rare and I am very lucky that it was caught while I am functional and able to fight. Any personal experiences in this area are welcome!!!

I am so sorry for what you have gone through and what you are facing. Here is the best data I can provide re IT and LMD in melanoma;

Here is a report on Topotecan used as IT therapy for LMD in multiple cancers -

Points that stood out to me - "Topotecan is a water-soluble semisynthetic topoisomerase I inhibitor approved for systemic use in small-cell lung cancer and ovarian cancer. It has a broad spectrum of anticancer activity against many cancer cell lines, including hematological malignancies, colorectal, breast, non–small-cell lung, and ovarian cancer, and childhood solid tumors." (Melanoma is not listed.)

"Patients with primary CNS lymphoma and ocular lymphoma did well, with TTPs of 70, 78, and 68 weeks for the two primary CNS lymphomas and ocular lymphoma, respectively. These favorable outcomes may be related to the underlying biology of these tumors."

"The lack of improvement of outcomes using IVent [IT] topotecan over other therapies is disappointing..."

My take ~ Only 3 patients in the study had melanoma. This report does not break down how they did. Follow-up was minimal on any patients. This report was published in 2008. I have to believe that if this were promising more would have been done with it by now. So - unless your tumor was tested for some mutation that was responsive to topotecan, this is not the route I would go.

Here is a 2019 report I put on my blog regarding data on LMD with links to prior post within:

The literature has a fair number of case reports of individual patients who delayed LMD progression through the use of immunotherapy or targeted therapy in conjunction with radiation. Noting this because the radiation you have already had may serve you well whatever treatment route you choose.

Here is a rather detailed report of LMD in melanoma -

Here is part of an article regarding the use of IT nivo in LMD for melanoma -

For what it is worth - I would look for IT therapy using an agent known to work on melanoma. In the states, perhaps the globe, MDA has done the most work for the longest on IT therapy with LMD in melanoma. In medicine (and most things) the best results come when you use the folks who do what is needed most often. 10,000 hours and all that! I also think that combining systemic therapy with IT therapy is not a bad idea. Not an expert., but someone who has been swimming in melanoma infested waters for a long time. I wish you my best with whatever you decide. Yours, celeste

Thank you so much for replying. I am not a big poster on this board but I have followed a lot when I needed to since my diagnosis and your insight is always appreciated. And as an RN myself, I always appreciate the help combing through the "real" literature!

I have been out of the loop for a while. Please take my advice only as my reaction to my past. Adriana's Neuro-oncologist recommended IT DepoCyte as it had been effective and he had used it in trial. Both true for LMD breast cancer. I inquired about the fact that melanoma is chemo resistant. He assured us it was the route to go and that he had been in contact with her regular melanoma specialist. After ommya surgery, one treatment and weeks of chemical meningitis symptoms her melanoma specialist said stop the treatment as it is ineffective for melanoma. I barely could contain my anger. Near the end I inquired about the use of IT Anti-pd1 (keytruda/Opdivo) but was told that it likely wouldn't be tried as it would be too strong. Months after Adiana's death MDA announced just such a trial.
What Bubbles says.
I would get to MDA and talk to Dr. Glitza ASAP
Missing you Adriana.
Happy Thanksgiving