Melanoma Research Foundation | luvnlyf | Activity https://forum.melanoma.org/user/luvnlyf/activity/ Activity feed for luvnlyf. Wed, 22 Apr 2026 09:16:51 -0400 https://buddypress.org/?v= en-US 30 hourly 2 0d4290218dc6333f932695b974bdb3c9 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-281133 Tue, 10 Mar 2026 20:36:20 -0400 One of the doctors for my clinical trial told me that they were having an 80% success rate. Sounds like things have really advanced since the last time you’ve had to deal with that. I wish you all the best!

]]> 51f4ab772aa8b77296a3e7b98748950f luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-280622 Sat, 22 Feb 2025 20:55:31 -0500 Hi everyone,

I’m back with an update—my PET, CT, and MRI scans are all clear, and I’m officially cancer-free! Dr. Hamid confirmed that I’ve had a complete response. Since my side effects have been manageable and my blood work looks great, he’s keeping me on the trial for the full two years.

He mentioned that if I stay in remission for the next…Read more

]]> 19464bc61f667e47ed4dd2b4518f665a luvnlyf replied to the topic 7 years NED! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/7-years-ned/#post-280499 Fri, 04 Oct 2024 07:41:44 -0400 I appreciate that you’ve shared your story! It really does help:)

]]> 31ddfa9c2fa0c5ecc3a60b22bd46d264 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-280177 Fri, 19 Apr 2024 01:40:11 -0400 I want to come give an update. The treatment appears to be working. I just got a scan after 3 infusions. The spots in my lungs and one lymph node are now gone. One of the lymph nodes that was 4cm is now 1cm and only one other lymph node that has it and it’s now half the size. They are saying at this rate I might be able to stop treatment e…Read more

]]> 6f95bb81bc7ef58b0b2818694297948e luvnlyf replied to the topic Itchy rash - any recommendations? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/itchy-rash-any-recommendations/#post-280125 Sat, 23 Mar 2024 09:35:06 -0400 I appreciate your response, I’ll take a look at that. Most of the rash has gone, I just have one area with the rash currently. It might be my imagination, but it does seem like the Sarilumab might be helping with some side effects.

]]> 5e8aff31f60a8a0957494068abdb52dd luvnlyf started the topic Itchy rash - any recommendations? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/itchy-rash-any-recommendations/ Fri, 02 Feb 2024 23:25:17 -0500 Hi everyone!

I just started a clinical trial with Sarilumab in Combination with Ipilimumab, Nivolumab, and Relatlimab. I’m about a week in and just started to get the really itchy rash. I’ve got Zyrtec and Cortizone 10, but I’m still pretty itchy. Does anyone have any suggestions for something to try?

Also has anyone done any infrared sauna…Read more

]]> 8abe6714189f9439d1ead41284041107 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-279650 Mon, 11 Dec 2023 22:57:46 -0500 So wonderful to hear! Looks like I will be doing one of his clinical trials. I really appreciate everyone that has taken the time to respond.

]]> 7ee48f642f12f8b477a509b38e35fa11 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-279588 Sun, 03 Dec 2023 05:37:21 -0500 Dr Hamid is one of the doctors I do have an appointment with next week. I happy to hear you enjoyed working with him. I appreciate that you took the time to share your experience!

]]> ae63ee1a06e4fd94f4a200016d7a8804 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-279583 Sat, 02 Dec 2023 05:16:05 -0500 I appreciate your time bubble, it’s very kind of you take the time to do so. Thanks to your link I was able to locate 2 doctors In my area and that are experts and they are both willing to meet with me next week.

My current oncologist did mention the ipi/nivo combo to me and I’m meeting with her next week too.

Thank you again, you have giv…Read more

]]> f91772ee5e0fc5c7a16b61c7c0dfda6a luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-279568 Thu, 30 Nov 2023 04:32:07 -0500 If you don’t mind me asking. I didn’t hear back from either of the doctors today. Do you think it’s more important to get in with the right doctor, or try to get an immunotherapy going sooner? Would it cause any issue to wait for the right doctor?

]]> b8ddac9e74be60e0aed557093c8be328 luvnlyf replied to the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/#post-279566 Thu, 30 Nov 2023 03:58:14 -0500 Thank you Bubbles for your kind response. The link you created is so wonderful. It’s exactly what I was needing. I already reached out to two doctors in my area that are on your list. You are so generous to share your knowledge.

]]> 7c6d64321a4edaf5aeee6299e2311f94 luvnlyf started the topic Metastatic melanoma stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/metastatic-melanoma-stage-4-2/ Wed, 29 Nov 2023 09:23:44 -0500 Hi,

I had blood in my urine and they found a tumor in my bladder. It turned out to be melanoma, they say it’s very rare, only around 35 documented cases in the bladder. I don’t have any melanoma on my skin, I’m very diligent about getting checked, so this is a big shock.

They are still trying to figure out the primary. My PET scan shows…Read more

]]> 8706e781cc66ce24760b6705d1abecdd luvnlyf became a registered member https://forum.melanoma.org/activity/p/95655/ Wed, 29 Nov 2023 09:06:54 -0500 0