Cindyco

I felt like coming back to the forum today and so glad I did to see this.  Thanks for sharing Rob.

https://www.facebook.com/groups/906485416088740/

This is a good Facebook support group with other mucosal melanoma patients and caregivers. Some survivors are many years out. Because you guys caught it early and are staying educated, you guys have a lot of hope right now. Stay up to date and aggressive with scans.

https://www.facebook.com/groups/906485416088740/

This is a good Facebook support group with other mucosal melanoma patients and caregivers.

Hi, my mom had anal mucosal melanoma. Right now all mucosal melanomas are being treated similarly. The standard route is surgery, then immunotherapy.  Push for treatment if you can. This disease is very aggressive, even with treatment. Everyone responds differently and mucosal melanomas have lower response rate to treatment.  Unfortunately, my mom is now on hospice after she developed leptomeningeal disease after having a good body response to biochemo and now ipilimumab. She previously did ipilimumab/nivolumab combo, Keytruda, Abraxane, Imcgp100/pd1 combo, biocehmotherapy, and mono ipilimumab since September 2016. 

Mucosal is not measured in terms of invasiveness the way cutaneous is. Mutation burdens tend to be lower as well (my mom only had about 20 mutations and none with targeted treatments available). I would definitely get the tumor tested anyway to have that information on hand should a treatment for a particular mutation come up in the future. Good luck.

So good to see a familiar name today. I still regularly think of you and Adriana and some of the others who have passed since I’ve joined this forum. I try to be as good of a caregiver as you were. I haven’t been posting lately, but I am so truly grateful for everyone who sticks around to support those who are still fighting.  My heart goes out to everyone who is a patient here and I pray for a miracle cure every day.

Congratulations! I just checked your history and your story is amazing.  Thank you for sharing. 

Hi Jess, 

My mom has Stage IV mucosal melanoma with liver/lung/lymph node involvement, which is a little different from cutatneous, but her treatment history has been similar to your wife's.  My mom did one dose of ipi/nivo (which she had to stop for liver toxicity), radiation to shrink the primary, then one dose of keytruda (also stopped due to toxicity), 2 months of Abraxane, 6 doses of the IMGCP100 trial, and now she is doing biochemo.  We also feel like we are not catching a break.  

That being said, the Abraxane was the easiest tolerated of all the treatments.  She had high quality of life during that time and was mostly asymptomatic.  Her hair thinned, but she didn't go bald.  We were extremely worried about switching from immunotherapy to chemo, but two major centers that the time felt that the Abraxane would be best since she was rapidly progressing at the time.  Looking back, it may have slowed her cancer, but ultimately wasn't enough and she progressed while on it which is why we had to stop.  However, every body is different, and it looks like you'd being doing Abraxane/Keytruda sequentially as well.  I hope that your wife will be one of the people that gets a good response from Abraxane.  Good luck!

Connie

Hi Rachelle, 

My mom has anal mucosal melanoma, so I won't be much help.  However, there is a facebook group for mucosal melanoma patients that has a lot of people who have done the radiation, but I feel like you're right in that they did the radiation after surgery.  I would ask the other patients who have that primary in the group: https://www.facebook.com/groups/906485416088740/

Connie

Thanks for sharing Lisa!  I've been looking for updates from you, so glad to hear you're doing well!

Thank you for all your work in sharing all your knowledge! 

Prayers to you and Kristine.

Thank you Ed and Celeste and all the regulars who frequently share their knowledge.  This forum was a blessing for me and even though my mom has passed, I hope to follow your example and share what information I can.  I still think of everyone in this forum all the time and my heart goes out to everyone who is still fighting. 

Hi, my mom also had LMD at the end, and Rob sent me a lot of information about available treatments.  Unfortunately, she passed about exactly 4-6 weeks after her LMD diagnosis.  If we were in any position to go to Houston for intrathecal IL-2, we would have done so.  However, my mom was rapidly declining at the point of her diagnosis and couldn't walk or urinate properly (this may ahve also been due to the brain mets).  I agree with Rob that you will need to move fast.  LMD is really terrible and I'm so sorry you're in this position. Prayers to you and your family.

I feel like the facebook group is good to compare personal experiences, while I think the MRF forum is better to stay up-to-date on treatments.  It seems like a lot of the mucosal people are much more private due to the areas of their primaries and don't really come here. I wish there was a better place for everyone to find each other since it's a rarer disease!