Melanoma Research Foundation | Daisy2018 | Activity https://forum.melanoma.org/user/daisy2018/activity/ Activity feed for Daisy2018. Mon, 20 Apr 2026 14:27:31 -0400 https://buddypress.org/?v= en-US 30 hourly 2 6ec92ff46c6384756b609fd10a2cb001 Daisy2018 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277094 Fri, 05 Aug 2022 03:06:08 -0400 JudyAU, thank you for you replying.
If I remember correctly you have been through a lot too, girl?!
What is the current treatment keeping nasty Mel at bay?
Yes, I can’t believe if I progression is the only response from this last two months hard work. It’s pretty unfair then. Hey, life can be unfair I suppose. I used to be a girl who doe…Read more

]]> 634b136c2b02e7618d204c312ae1652a Daisy2018 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277093 Fri, 05 Aug 2022 02:56:29 -0400 Thank you Cindy for replying. Not sure about being a Pioneer. TIL has been around a long time. I m glad Keytruda worked for you. You are an example of a patient who’s immune system was kicked in a gear right away. You need to be in a research articles or something to see what kind of cool compliant genes you have. Stay around. Thinking positive i…Read more

]]> f1bfd27cc028b1ffd709b16f7d71c588 Daisy2018 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277092 Fri, 05 Aug 2022 02:47:56 -0400 Gopher38, it is nice to see you around. Yes, all this treatment leaves permanent marks with neuropathies, pain, skin changes.
Just put one foot in front of the other, literally! Lol. Not sure what you are talking for pains and discomfort but my morphine and hydromorhone help me a lot to get through my day. After this last treatment I noticed pain…Read more

]]> 754ae56258d10b0788c04c11c1689615 Daisy2018 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277086 Wed, 03 Aug 2022 18:19:46 -0400 Thanks for your replay. Nice to see you still around. How’s your health has been?

After I got Ipi/Nivo I think I stopped growing new lesions but the ones I had kept growing. The same for Opdualag or TIL. Nothing new popped up but the existing ones kept growing.
The TIL one was particularly disappointing because it was a brutal treatment with h…Read more

]]> 5f0ddb743ec61bdf9fab90acb662255e Daisy2018 replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277083 Wed, 03 Aug 2022 01:39:33 -0400 Thanks! I need an ammunition to fight. I m out out.

]]> a6e23846edf3ec517ea8d795504e5361 Daisy2018 started the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/ Tue, 02 Aug 2022 14:56:58 -0400 Hello Folks,
Just received results of TIL trial I did a month ago. It was a brutal treatment.
There is no improvement. Nothing new have grown. Existing lesions have grown. Damn it!
Why my body is so stubborn to respond? I can not believe it.
3 weeks in a hospital. Lots of traveling, hotels. Airline tickets.
Did Keytruda, targeted, Optivo/Yervoy,…Read more

]]> 9b7c2aeab4d79737cbb32961012b0cfc Daisy2018 started the topic TIL results and new hope in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/til-results-and-new-hope/ Mon, 01 Aug 2022 18:51:52 -0400 Hi Folks,
Just received results of TIL trial I did a month ago.
There is no improvement. Nothing new have grown. Existing lesions have grown. Damn it!
Why my body is so stubborn to respond?
What’s next?
I maybe have one more trial left in me. Any suggestions?
Yours, Daisy!

]]> 11e02a923cf7bc68cf39b65a7ffd07fe Daisy2018 replied to the topic Please opinion needed treatment options in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/please-opinion-needed-treatment-options/#post-276610 Sat, 16 Apr 2022 03:57:35 -0400 What I can see with TIL it’s not readily available. You need to find an open trial. You need to travel most likely. You need to have a slot opened at the time when you need it. You need to be strong enough for the harvest surgery, for travel, for the treatment itself. You must to not have any Leptomeningial disease. LMD
Folks with Mets get b…Read more

]]> eb25a48031b0c963b1a4c928642a4338 Daisy2018 replied to the topic Please opinion needed treatment options in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/please-opinion-needed-treatment-options/#post-276609 Sat, 16 Apr 2022 03:40:42 -0400 Thanks Mark, you are always so kind to respond right away.
The targeted therapy is already in a past as well as Keytruda.
Yes, the 3 months scans look kind of promising. There were several Mets that still had grown bigger. Not sure about tumor burden. My LDH has always been pretty low whereas my bones just kept crushing on me.

The question…Read more

]]> 65114cb20b61807b6eec252d140e4c55 Daisy2018 started the topic Please opinion needed treatment options in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/please-opinion-needed-treatment-options/ Fri, 15 Apr 2022 23:24:46 -0400 Hello friends,
I don’t post often but now I really need your opinion folks.
I have received Optivo/ Yervoy 4 doses and 1 dose of Optivo for my stage 4 melanoma.
Finally had a scan.
The scan showed most of the lesions decreased in size, some staying the same size, couple gotten slightly bigger. No new ones grown. I have lots of bone Mets.
So l…Read more

]]> b5565531d4da156b3d8c4cb3be418bee Daisy2018 replied to the topic Please allow me to share my dear father's Melanoma journey :*( in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/please-allow-me-to-share-my-dear-fathers-melanoma-journey/#post-276520 Fri, 25 Mar 2022 17:02:57 -0400 Dear thecruisemermaid,
What you did being around and take care of your dear father was a selfless act of kindness and care.
He had pretty serious comorbidities, he was not super young and yet he lived 5 more years. It’s a testament of your great support and courage.
Don’t look back as you should have done something else. Look at it as you did…Read more

]]> 0cea9fc2a69ca535153bcdaa3a7d0df0 Daisy2018 replied to the topic True local scar recurrence in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/true-local-scar-recurrence/#post-276488 Fri, 18 Mar 2022 05:14:48 -0400 Hi there,
Sorry for your ordeal. I don’t have information on your particular situation. I can share my experience of dealing with it. I was diagnosed as stage 1b in 02/2020. I was told the prognosis is pretty good. Wide excision was successful. Lymph nodes were clear. I kept progressing pretty fast up to stage 4 now.Just 2 years.
Don’t get fea…Read more

]]> c6eefce0f1ebe684110fd09786a9a6a7 Daisy2018 started the topic Scene from John Q movie in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/scene-from-john-q-movie/ Tue, 15 Mar 2022 01:12:47 -0400 Ok. Folks. Looks like my Iptivo/Yervoy was not success either. Unless it takes it’s sweet time. I was trying to get in a TIL trial and have been talking with a trial coordinator. They had reviewed my records with research team. We were waiting 6 weeks for my brain Mets to clear up after SRS. Finally I had an appointment scheduled with a doctor r…Read more

]]> e8a9b042b8c80f62d55df3877d01f388 Daisy2018 replied to the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/#post-276469 Sun, 13 Mar 2022 16:31:42 -0400 Hi there,
I wanted to add something since I m kind of in the same boat waiting and praying for immunotherapy to kick in, hopefully.
I plan to have biopsies done to two spots I have grown since last scan. The lymph node and the bone in my sternum.
I do have a history of growing sarcoidosis tissues as a response to immunotherapy which is quite…Read more

]]> 15a0a29a2fc72fab90ef92a7d365b307 Daisy2018 replied to the topic Zometa or Denosumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/zometa-or-denosumab/#post-276462 Sat, 12 Mar 2022 16:58:56 -0500 Thank you ThinkingPositive for responding!

I didn’t know there is something else besides the two medications I mentioned previously.

I need to do my research. It sounds like a serious treatment. One more heavy duty medication on a top of ipi/nivo I m getting now. Definitely not like vitamins infusion.
I m terrified of feeling worse then I m n…Read more

]]> 28a34a68244fc9414bdd775646da72d0 Daisy2018 replied to the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/#post-276461 Sat, 12 Mar 2022 16:44:29 -0500 Hi there,
If I may make a little joke?!
Your radiologist perhaps went to an art school before going to medical school?!
None of my PETs/CATs the radiologists mentioned the terms of ground glass.
When you goggle it this is what it says.

Ground-glass nodules (GGNs) in the lung are lesions that appear hazy on computed tomography (CT), without…Read more

]]> 8379570dc90ddecb53a572acbc81842b Daisy2018 replied to the topic Zometa or Denosumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/zometa-or-denosumab/#post-276455 Fri, 11 Mar 2022 23:51:12 -0500 Thank you Edwin!
Oh, you didn’t have many side effects to Zometa?! I read lots of people saying it’s a worst medicine ever with flu like symptoms, bones, joints pain, feeling like being hit by the brick wall.
I can’t afford to feel worse than I feel. I mean there always can be worse, right?! I m terrified to get all these terrible side effec…Read more

]]> 57e9beecaa81c5e00461766a5274ff01 Daisy2018 replied to the topic Newbie here! Braftovi/Mektovi Side Effect Question - plus some general stuff in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/newbie-here-braftovi-mektovi-side-effect-question-plus-some-general-stuff/#post-276452 Thu, 10 Mar 2022 22:50:00 -0500 Hi there,
It’s nice you are such a dedicated husband. It’s scary to have your loved one fighting this nasty disease.
I was too pretty hyped up by J. Carter’s story when I started my battle with melanoma 2 years ago. With every new treatment I kept reminding myself that there is still hope and I m not suffering too much yet.
Now with bones Mets…Read more

]]> 8fca47cbc1fd43fde0f7a59473d129f6 Daisy2018 started the topic Zometa or Denosumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/zometa-or-denosumab/ Thu, 10 Mar 2022 17:40:01 -0500 Hello fellow melanoma fighters,
I thought I can ask.
My bones have been giving up on me lately with compression fracture in my L3 from Mets.
I had asked my doctor for Zometa, since I remember reading here it helps with bones support. Does anybody have experience with it?

Optivo/Yervoy they make me already so stiff. I had my 4 th infusion…Read more

]]> 85a3b66bdaa4087b1b4a078ead85a6c8 Daisy2018 replied to the topic Update and Question in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-and-question-4/#post-276379 Tue, 22 Feb 2022 03:21:42 -0500 Hi Grace,
I was following your posts. Thanks for an update.
I can not answer your question but sounds like you have a great attitude and pretty good news. Despite minor hick up with brain Mets. Bran radiation or SRS is generally tolerated pretty well. You will sail it trough. Sounds like you have a good team of doctors too.
I didn’t notice m…Read more

]]> 0a15b0de4508a2c6b3671634f14ae1d8 Daisy2018 replied to the topic Pregnant & new diagnosis Junctional Melanocytic Nevus with Severe Atypia in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/pregnant-new-diagnosis-junctional-melanocytic-nevus-with-severe-atypia/#post-276378 Tue, 22 Feb 2022 01:16:13 -0500 Hi there,
I would get it off of me now, yesterday. This s.. doesn’t play games. It grows fast. Every millimeter of it counts. Your doctor suggests to remove it. Do it.
I had had a mole all my life which changed shape and form all of a sudden. I had asked my family doctor to remove it on my physical appointment. She referred me to d…Read more

]]> 21d43196993cf643b3298e72161786f1 Daisy2018 replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276377 Tue, 22 Feb 2022 01:03:17 -0500 You are very welcome Brian!
Post questions, talk, connect.
It does feel little less lonely to talk to people in the same situation.
Positive things happen at the time of need I m certain of it.
I recently met a woman while walking my pup and she had became my angel suppport person. I feel she was sent by higher power
In a time of need!
Stay…Read more

]]> a893cb1ef5a6f5dffe2fae171f20a120 Daisy2018 replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276374 Mon, 21 Feb 2022 19:38:51 -0500 To set the record straight, the grandkid is my oldest son’s son not my teens kid. Lol.

]]> c8b6e6cf61b1ba143a9819dc4ddada86 Daisy2018 replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276372 Mon, 21 Feb 2022 16:32:28 -0500 Hi Brian,
I agree with Celeste. You are getting nivo and something else so it sounds promising.
I would ask my doctor why is the preference of this trial vs ipi/nivo?

Please don’t look at ageing itself. I look at it as a disease process. I might be in a bad shape now but I will bounce back if I beat this thing. It’s hard not to be able to pla…Read more

]]> a200824d5b99d1a7815a2666d16cb94c Daisy2018 replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276366 Sun, 20 Feb 2022 18:57:40 -0500 Hi there,
Welcome to the forum. There are lots of kind and knowledgeable folks here. Hopefully it will be less lonely experience for you.
I always wonder how do they come up with the names of the medications? I never heard of this medication. Interesting choice for your doctor instead of Optivo/Yervoy. It’s hard to remember and harder to p…Read more

]]> 4999f8b214f35dddbba18388c5b4a1b7 Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276351 Sat, 12 Feb 2022 00:52:43 -0500 Thanks Edwin!

]]> d61e100bb83cc4fee2243eae3cb95c1e Daisy2018 replied to the topic Diagnosed with Melanoma In Situ but sore lump nearby in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/diagnosed-with-melanoma-in-situ-but-sore-lump-nearby/#post-276349 Fri, 11 Feb 2022 23:15:53 -0500 Talk to the nurse of your derm’s office and explain that you have already been diagnosed with melanoma and you Ned full body skin check sooner. My derm front desk will schedule me in 4 months if I would not ask totalk to the nurse. The nurse usually moves me in like tomorrow.

It’s good you are getting the scan. The scan should show what’s going on.

]]> 8d079de73891c866d1f569cf2808cf4c Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276348 Fri, 11 Feb 2022 20:49:37 -0500 I see. God bless DR. Weber. He consults in my case too. This days insurance company probably won’t be paying for infusions this long.

How soon you became NED after initiating of treatment? Did it take a while to clear up all the lesions? Was it a gradual process?

The jaw lymph node cancer was it melanoma or secondary malignancy?
Thanks E…Read more

]]> aff7a788d614fb8c8fa033b78854f145 Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276345 Fri, 11 Feb 2022 15:34:06 -0500 Edwin, you have given me hope. I m very grateful you responded. God bless your heart and many more years of life and happiness to you!
That’s why we need this forum to know that there is a hope.
Some days are pretty dark. I try not to think about it and I know I do everything I can. I make myself assignments for my mind and my body to c…Read more

]]> aaa59e45f1950e24ef34e227f12c86c2 Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276340 Fri, 11 Feb 2022 01:40:40 -0500 NED for two years?! OMG!! Magic words!
Thank you so much for responding. That’s what this board is about. The support is invaluable.

Anything else you may share about your experience? Did you do Nivo for a while after?! Any major toxicities? How’s your overall health if you don’t mind me asking? Are you back to work?

]]> af2c03827e3aace22de4db797e4c2020 Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276338 Fri, 11 Feb 2022 01:10:14 -0500 Lol. I had almost same scan results. I think the difference is which lesions cause pain. I lighted up like a Christmas tree this time.
They will just go after ones which hurt.

]]> 4b81932076797c3805a99fed96fa0360 Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276337 Fri, 11 Feb 2022 01:06:20 -0500 Sounds pretty similar. It did start with rib pain, couple brain Mets, other big bones Mets pain. Bones Mets hurts like motherfucker.. ouch!!!
It took them a while to confirm these bone lesions. I had to go to a bigger hospital system.

I can’t even imagine being in pain for all this time until treatment finally kicked in.
You must be tough g…Read more

]]> 99292f03dd48d4c0dfa5e1f13797408e Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276334 Thu, 10 Feb 2022 23:39:37 -0500 Thank you Edwin.
I m surprised you didn’t do palliative radiation?! Why suffer? Bone Mets are very painful.

Yes, that’s the plan. I agree with you as well as Dr. Weber said today to do 4 infusions before doing any scans.

]]> ea099d5490b8000f9dce6c395e53f8b2 Daisy2018 replied to the topic Clinical Trial for BRAF+ in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/clinical-trial-for-braf/#post-276326 Thu, 10 Feb 2022 16:23:35 -0500 It sounds like a reasonable good plan.
I would do it if I was in your situation.
Braftovi/Mektovi should shrink the tumor and then it can be resected.

In my opinion, again in my opinion,
Only way to stop melanoma forever is immunotherapy not targeted therapy. It works for some folks not for everybody. Otherwise it comes back sooner or later.

]]> 42c7f515feb3fd6d29e1438cf4c4b9cb Daisy2018 replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276324 Thu, 10 Feb 2022 04:33:30 -0500 Thanks for your responses. Yes, the pain part sucks. Every morning I wake up and it is still there. Usually when we are sick we get better after a while hopefully. The pain is there every morning and lasts all day I just keep loading up on morphine, oxy, gabapentin,naproxen all day and night. The radiation will help. The systemic treatment still…Read more

]]> c84973d260023fcef1ec7e2f8833f7b0 Daisy2018 replied to the topic Imaging question ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/imaging-question/#post-276317 Thu, 10 Feb 2022 00:59:48 -0500 It doesn’t seem you have a choice in this situation unfortunately.
Symptoms wise, are you feeling ok? Pain, etc.
if you do it’s a good sign. Again, there is not much you can do anyway to do imagining sooner. Although when I schedule my scans I start calling closest hospital and go father and farther if needed. Other hospitals in the same sys…Read more

]]> b9457ec0a4f68ff2641d7d9087d2df2d Daisy2018 started the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/ Thu, 10 Feb 2022 00:41:58 -0500 Hello friends,
It’s been a while since I posted last time. Need your advise guys and girls!
I have started optivo/yervoy beginning of January for stage IV. Mets in brain were treated with SRS. Painful Mets in rib cage were treated successfully with radiation. I received 2 infusions so far.
Lots of pain in my pelvic bones and right shoulder r…Read more

]]> 8bc1c3db22e904efa102f3afff48aea3 Daisy2018 replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-274609 Mon, 26 Apr 2021 21:20:07 -0400 https://www.nejm.org/doi/10.1056/NEJMoa1904059
Something I found

]]> fae74a6f4dec50a4928c1c6823d30afd Daisy2018 replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-274607 Mon, 26 Apr 2021 19:57:41 -0400 Oh. I didn’t realize you have tried combo.  You did immunotherapy, not the triple right?
I m sorry for asking you.

]]> 18f7f6276ba4b02fd2a785b3867a9112 Daisy2018 replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-274605 Mon, 26 Apr 2021 19:42:43 -0400 The combo of targeted and immunotherapy can still work even if you have low PD1 expression, I think.
They do push for targeted therapy. Not sure why?
Easier for them to prescribe? Standard of care?
It will work. The question is for how long?!

I was talking to my son recently and we talked about success rate of immunotherapy. It’s a pretty scary r…Read more

]]> 914b17d9946022b5fd6767531bfecb58 Daisy2018 replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-274602 Mon, 26 Apr 2021 17:41:46 -0400 What did you decide on your treatment?

]]> de72a1a9329b467330638342199c2382 Daisy2018 replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-274601 Mon, 26 Apr 2021 17:40:02 -0400 Lol. I thought we have some established scenarios. I mean we know it stops working in about 9 months-15 months, right?
I was wondering if there are any ppl here who were staying on it for years?

]]> 30d30f2fbe4361b397a3621987b4e50a Daisy2018 started the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/ Mon, 26 Apr 2021 16:12:45 -0400 Hello everybody,

I was wondering how long do Braftovi/Mektovi treatment can last? I heard about a year in general. Is there anybody lasted longer without relapsing?
I was pretty resistant to this treatment feeling it’s more like a bandaid and was hoping for a cure. Still feel I live on barrowed  time and maybe I should work on my bucket list. Pe…Read more

]]> 6535ab32589996606f6a4130bfb3270f Daisy2018 replied to the topic Does TIL always come after Immuno and Targeted? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/does-til-always-come-after-immuno-and-targeted/#post-274557 Mon, 19 Apr 2021 21:38:46 -0400 Hi there,

I read some responses and it sounded like hard treatment, maybe even harder than targeted.
This is what happens.

After a one-week chemotherapy conditioning regimen, patients receive a single lifileucel infusion, followed by up to six doses of interleukin-2 (IL-2), a chemical messenger protein that promotes immune cell activity.

I…Read more

]]> 965c663c4e583100b5a61929bd93a60f Daisy2018 replied to the topic Quality of life on Braftovi / Mektovi and I in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quality-of-life-on-braftovi-mektovi-and-i/#post-274553 Mon, 19 Apr 2021 16:49:05 -0400 Thank you very much everybody who responded.

I don’t log in here that often. The anxiety hits me pretty hard.

I m glad some people feel somewhat normal on these medications. I was prescribed 6/6 pills. I asked my doctor if I can go on a vacation before I start treatment. My sons wanted to do last trip before all this mess will start. My doctor a…Read more

]]> 807bb790436d52dda085ce3ccc03ee8e Daisy2018 replied to the topic Quality of life on Braftovi / Mektovi and I in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quality-of-life-on-braftovi-mektovi-and-i/#post-274441 Thu, 01 Apr 2021 04:03:02 -0400 Mark,

Yes you are right BRAF mutation gives you advantage. My sarcoidosis like lesions reaction to immunotherapy doesn’t let me have any type of immunotherapy for a while. This part sucks. Was I  not BRAF positive I m not sure what they would do with me now. Probably surgery but still they would need some systemic coverage. I lighted up like a Ch…Read more

]]> 848dfaae21ce6631a68f773a40a971a8 Daisy2018 replied to the topic What do you say at work about your cancer? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/what-do-you-say-at-work-about-your-cancer/#post-274440 Thu, 01 Apr 2021 03:32:49 -0400 It’s a beens year since cancer diagnosis. I have managed to from from my couch through 2 surgeries, one with healing a wide excision with a graft abs another where I had a gain for a whole month. I did my visits for work hiding my drain under the long skirt. Some people thought I was wearing that long skirt because of religious reasons. It w…Read more

]]> ba974f81427aa1899c5d596ff998c89a Daisy2018 replied to the topic Quality of life on Braftovi / Mektovi and I in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quality-of-life-on-braftovi-mektovi-and-i/#post-274436 Wed, 31 Mar 2021 16:03:06 -0400 Thank you Sandy for taking time to respond!

Just got pills in the mail this morning.
One medication 6 pills once a day and another 3 pills twice a day.
Just thinking about it makes me want gag!
Oh, each monthly dose is $12,000 !

]]> afe333052a173f2ae38da1d7b5631baa Daisy2018 started the topic What do you say at work about your cancer? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/what-do-you-say-at-work-about-your-cancer/ Wed, 31 Mar 2021 15:07:54 -0400 Hello everybody,

I was wondering what do people usually tell at work about their cancer?
At what point do you tell your management that you are going through cancer treatment?
Are you worried that they may let you go since you may not be as productive as you used to be?
Not sure if my thinking is right. How do people usually hadle this topic?

Thanks!

]]> 28a9ebc7063a546660b14d46cf22696b Daisy2018 replied to the topic Quality of life on Braftovi / Mektovi and I in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quality-of-life-on-braftovi-mektovi-and-i/#post-274433 Wed, 31 Mar 2021 00:54:52 -0400 Mark,

Are intralesional administred in the lessons under the skin or they can be injected in the lymph nodes? My oncologist was not sure when I asked him this question.
Yeah, doctor Weber doesn’t want me to do Keytruda or any alike immunotherapies in order  to calm down this reaction I had. He said we can do it later.
I would do  i…Read more

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