Melanoma Research Foundation | Johnjk04 | Activity https://forum.melanoma.org/user/johnjk04/activity/ Activity feed for Johnjk04. Wed, 22 Apr 2026 17:13:16 -0400 https://buddypress.org/?v= en-US 30 hourly 2 a27516061354c0f027482bc608a91e1a Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280684 Tue, 27 May 2025 17:56:01 -0400 You got it Nulls. Celeste will always be remembered by all of us. We struggled with knowledge of the melanoma world, trials and treatment. Our marvelous friend, Celeste, always had so much information for us. Thank you again Celeste, we miss you.

]]> 697ee469bc32e8f277b4552703596e44 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280570 Tue, 31 Dec 2024 14:19:42 -0500 Chris R, so very well said. We have lost such a compassionate, loving mentor. All of us were blessed to have Les in our lives.
I am also an Ipi / Nivo 12.5 year survivor. Congratulations on your marvelous success!!
Please check back to this site, February or March. I will be announcing a fabulous upcoming event.
Let us welcome the new year, a…Read more

]]> 9dd798c592ca3872b87a7f46a3b76982 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280532 Fri, 08 Nov 2024 22:44:49 -0500 Chris and Lucas, all of your words about Celeste were so thoughtful, caring and loving.
Thank you very much.

]]> 7a067df19e672867b5e93558bddd9263 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280530 Fri, 08 Nov 2024 15:56:12 -0500 Cat, you are so welcome. Celeste was such a brilliant, caring, encouraging friend of so many people.
Cat, I have been in remission since August 2012. So big, big congratulations 🎊 to both of us.
Please don’t let cancer hold you prisoner. You beat it fair and square. Cat, you are the champion. Wake up every morning and put on your survivor t…Read more

]]> ecddaeed32df2f9beabdf23f16719853 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280526 Thu, 07 Nov 2024 03:17:20 -0500 Just want to apologize. With Cat’s assistance, Celeste only had two types of cancer.
She beat the melanoma with the first Opdivo trial.
Some years later, she was sadly given the adenocarcinoma of the appendix cancer.
With treatment, she went into remission. Sadly it did come back to her and took her life.
Sorry to mislead any of you.
Thanks Cat.

]]> aae7727ddcc8648fbb25a6c05dcf59c4 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280525 Thu, 07 Nov 2024 00:58:33 -0500 Okay the details Cat! Celeste’s nicknames are Les and Bubbles.
Her husband is Brent or B as she liked to call him.
Pretty sure they have one daughter and one son.
Celeste was in the first nivo trial, I was in the first nivo / Ipi trial.
So Celeste and me became buddies from this forum.
I even dined with Celeste and Brent at Pepe’s Apizza, New Hav…Read more

]]> 1df50b87d655a2c482d13b03fae83bb9 Johnjk04 replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280523 Wed, 06 Nov 2024 23:53:07 -0500 Cal, all of us are feeling an enormous amount of pain.
I received an email from her this past August.
Sadly Les was in the midst of her third different cancer.
It’s called adenocarcinoma of the appendix.
She did sign a no recitation form.
No where in her email, did I get a sense that her life was closing down.
All of us are so fortunate to h…Read more

]]> d1a42ec7267d242ea186d006ccf6edac Johnjk04 started the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/ Sun, 03 Nov 2024 15:32:50 -0500 Just wanted to pass along, our sweet Bubbles / Celeste / Les has recently left us, for the eternal peace. Bubbles passed away on 10/23/2024. We are forever in debt to her for her endless knowledge of the melanoma world. She always knew where the new clinical trials were opening up. Bubbles, you always surrounded us with your love and compassion. I…Read more

]]> 5a3f4504e657b191dd74843b147f043a Johnjk04 posted an update: Just wanted to pass along, our sweet Bubbles / Celeste / Les […] https://forum.melanoma.org/activity/p/127639/ Sun, 03 Nov 2024 15:28:09 -0500 Just wanted to pass along, our sweet Bubbles / Celeste / Les has recently left us, for the eternal peace. Bubbles passed away on 10/23/2024. We are forever in debt to her for her endless knowledge of the melanoma world. She always knew where the new clinical trials were opening up. Bubbles, you always surrounded us with your love and compassion. I…Read more

]]> 0 a08b9669f3719652209bf4155bd71106 Johnjk04 replied to the topic More vitiligo….yay!!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-vitiligo-yay/#post-275983 Mon, 15 Nov 2021 17:57:05 -0500 My bad, it’s: “ Everything’s Gonna Be Alright”.

Someone better come on and tell, what is so ironic about this song and artist.

]]> b9ed0c0b882da63893b6f45c859c38ea Johnjk04 replied to the topic More vitiligo….yay!!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-vitiligo-yay/#post-275982 Mon, 15 Nov 2021 16:45:25 -0500 Christina D., maybe you can help me.
Who was the artist that performed the song “ Everything is Going to be All Right”?

]]> 31395803992f0e792db305f6ea34f48e Johnjk04 replied to the topic Brain met stats are so horrific (>3) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-met-stats-are-so-horrific-3/#post-275940 Sat, 06 Nov 2021 01:21:24 -0400 Ladies, no reason to get down and out.

In 2012, I had melanoma in pretty much every organ, brain and spinal cord.

I had two craniotomy, with the surgeon removing twenty eight pieces of anything that resembled cancer.

Never got the count, which were benign or malignancy. Also had three Gamma Knifes for some more brain tumors. I did have some…Read more

]]> 145f5624c4893cba03b494918adbd2b5 Johnjk04 replied to the topic Anyone have large tumor burden that is now NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-large-tumor-burden-that-is-now-ned/#post-275835 Mon, 11 Oct 2021 13:58:11 -0400 Way to go Adam !!!

]]> 9eb0d0f224ab648b1f33d098c344cca1 Johnjk04 replied to the topic Anyone have large tumor burden that is now NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-large-tumor-burden-that-is-now-ned/#post-275822 Sun, 10 Oct 2021 08:44:51 -0400 Christinad, yes it does feel nice. Had my brain MRI and CT scan last week. My oncologist is on a two month vacation (isn’t that crazy?). The office asked if I’d like to see a different oncologist, I told them I’d wait for two months (isn’t that crazy?).

Christinad, your last scan day and oncologist visit will come as well. Just carry faith,…Read more

]]> 83d49a4e3a1d42192cbfc21ee01b5f71 Johnjk04 replied to the topic Anyone have large tumor burden that is now NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-large-tumor-burden-that-is-now-ned/#post-275818 Sat, 09 Oct 2021 02:12:01 -0400 Christinad, I became NED, seven months into the trial.

I received sixteen treatments of Ipi / Nivo over the course of two years.

According to the trial’s protocol, I am not a full nor even partial responder. I had two brain tumors, six months into the trial.

So keep your faith and hope. This immunotherapy is one helluva treatment.

My trial w…Read more

]]> 685da11ecb05a3fd9e82784f3165fa48 Johnjk04 replied to the topic Anyone have large tumor burden that is now NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-large-tumor-burden-that-is-now-ned/#post-275814 Fri, 08 Oct 2021 21:21:02 -0400 Christinad, I know that you’re going through a tough time now. It will get better.

Jan. 2012, I had melanoma in the brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

Two craniotomy, three Gamma Knife (brain) and the first clinical trial of ipilimumab and nivolumab did me well.

I have been NED a for nine years n…Read more

]]> 37b77bdf71765f3c2e62a3f907b628fe Johnjk04 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275542 Tue, 24 Aug 2021 12:47:35 -0400 Chris’ wife, I apologize if I come over as too cold or hard. I do hold myself to the same standards. During my sixteen treatments of Ippi / Nivo, I suffered plenty of adverse side effects.
During the lowest point on my melanoma journey, my marvelous , eighteen year old son died by suicide.
Melanoma at it’s absolute  worse, will never ever come…Read more

]]> abed1ea651870d7bea283ffd9e265afe Johnjk04 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275533 Tue, 24 Aug 2021 00:24:27 -0400 Chris’ wife, let’s hope that this reaction is a mute point in the future.

There are people that are no longer active on this sight, they were dealt a worse hand of cards than immunotherapy side effects.

Best wishes Chris and his wife, I’ll see both of you in my prayers !!

]]> b77844622d2b6d4a9c4b303c568e6917 Johnjk04 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275529 Sat, 21 Aug 2021 02:00:36 -0400 During my second craniotomy, I developed a blood clot in my ankle. It was stabilized with an IVC filter. The clot was so large that it completely shut down my inferior vena cava. Took many years to have alternate veins develop.

January 2012 – melanoma in brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

August…Read more

]]> 94ee834f0905e3268ef4b829b73fb705 Johnjk04 replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275527 Fri, 20 Aug 2021 17:57:04 -0400 Here comes a blast from the past. In January 2012, I was accepted into the first Ippi/Nivo clinical trial. There were 53 of us from Yale – New Haven and Sloan Kettering. Our trial consisted of 16 doses of Ippi/ Nivo. October 2013, I lost function of my pituitary, adrenal and thyroid glands. Will be a lifer with prednisone and levothyroxine. MK, I…Read more

]]> 6fa867150ace99acb8b4fed70c93ff12 Johnjk04 replied to the topic When the triplet fails... in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/when-the-triplet-fails/#post-274731 Wed, 19 May 2021 11:42:41 -0400 Good day Tim,

We have walked the same road with melanoma. Also we share Smilow Cancer Hospital and the marvelous Dr. Mario Sznol. Fortunately, I am almost nine years NED and you are in the midst of your battle.

Tim, I would like to take you out to lunch. We can discuss your upcoming battle, the fantastic treatment we’ve had at Smilow and your h…Read more

]]> 345bc874cb58b9843d483d3402c1bb7a Johnjk04 replied to the topic When the triplet fails... in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/when-the-triplet-fails/#post-274689 Thu, 13 May 2021 00:27:21 -0400 Tim, I almost want to congratulate you for the outcome you’ve chosen. Dr. Sznol will give you excellent care. You are sitting in the catbird seat. Wishing you the absolute best. Goooo TIL ‘s !!!!!!

]]> ea9c5bd759b9b9a2304e5e5463f01b38 Johnjk04 replied to the topic When the triplet fails... in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/when-the-triplet-fails/#post-274665 Sat, 08 May 2021 14:24:47 -0400 Tim, this is the reason that I was so pleased to be treated by Dr. Sznol at Smilow. They are completely dedicated to you at this clinic. Many community hospitals will keep you in their care, when they know that your life expectancy would greatly improve at a melanoma treatment center. Sometimes it’s all about the revenue stream. An ovation of g…Read more

]]> 41fcef14a8b0010a1c5b99939695babb Johnjk04 replied to the topic Scalp Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/scalp-melanoma-3/#post-274573 Wed, 21 Apr 2021 22:33:25 -0400 Wil, too bad that you’ve been picked to join us. The scalp doesn’t hold too many nerves. I had two craniotomy, one left me with 24 staples to close, never had an pain after surgery. I was given a prescription of oxytocin and never took one. The tracer injection on your surgery day will be a bit painful, but won’t last more than fifteen secon…Read more

]]> 895418b96fbc07b5f6f8c954aae99bbe Johnjk04 replied to the topic Second opinion in the US if you live in other country? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/second-opinion-in-the-us-if-you-live-in-other-country/#post-274504 Wed, 14 Apr 2021 15:07:29 -0400 Jenny, I’m sad that you and your husband have to deal with melanoma now. Having written that, there are plenty of treatments now to bring him back to good health. Back in 2012, I had approximately twenty brain metastasis taken care of. Dr. Veronica Luk Chiang. I was also in a clinical trial, treated with ipilimumab and nivolumab. Contact Dr. C…Read more

]]> bfa1e3eb7411db5cdb8058310ca8e253 Johnjk04 replied to the topic well crap...a new spot in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/well-crap-a-new-spot/#post-274443 Thu, 01 Apr 2021 15:50:27 -0400 There is never silliness, when you are trying to preserve your life, for yourself, children and husband. If something doesn’t feel, look or act right, please go to your oncologist. Savannah, wishing you the best, behind you all the way.

]]> edd9c6c826da4857160060d0efe64a27 Johnjk04 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-274437 Thu, 01 Apr 2021 00:34:30 -0400 Daisy, now it’s tough enough dealing with cancer but then we have to tiptoe around our employment. First of all, I hope your treatments are successful and then you can put Mel in the rear view mirror. When I dealt with stage IV, I pretty much told all employees. Being a team leader my absences, would affect everyone. I definitely feel that you s…Read more

]]> 48203930da7c4a3f86868b3f03b8905b Johnjk04 replied to the topic Braftovi/Mektovi + Nivo Triplet in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/braftovi-mektovi-nivo-triplet/#post-274319 Fri, 05 Mar 2021 21:53:44 -0500 Tim, you’ll know all set when Dr. Sznol calls you an old friend. He uses this term for his patients that he feels will not have a melanoma reoccurrence.

]]> 36c589a1795d124ab8986b36723ac803 Johnjk04 replied to the topic Braftovi/Mektovi + Nivo Triplet in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/braftovi-mektovi-nivo-triplet/#post-274304 Wed, 03 Mar 2021 15:57:29 -0500 Sorry Tim, Smilow is a marvelous clinic.

]]> cecaaba6e7c29c6866f8741e33120f7a Johnjk04 replied to the topic Braftovi/Mektovi + Nivo Triplet in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/braftovi-mektovi-nivo-triplet/#post-274303 Wed, 03 Mar 2021 15:56:01 -0500 Hello Tim,

I hope everything is looking up for you. Very pleased to see that you have Dr. Mario Sznol as your oncologist.

I started with Dr. Sznol back in 2008. My melanoma had progressed to my brain, spinal cord and many organs.

Craniotomy and Gamma Knife from Dr. Chiang and then Dr. Sznol put me into the very first clinical trial of

Ipi /…Read more

]]> d1292e23c7e383fbfcefb6ec98a907a9 Johnjk04 replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274278 Tue, 23 Feb 2021 22:27:24 -0500 Hello Cindy, the reason for my blood thinner is because one of my craniotomy gave me a blood clot. The clot traveled up my leg and was trapped by a placed bird’s nest filter. Since the clot was so large, it completely closed my inferior vena cava. Since my calf with the blood clot still swells up, looks like I’ll be on blood thinner and com…Read more

]]> eeb62bbf0e9fc783d9d91158aada97a3 Johnjk04 replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274275 Mon, 22 Feb 2021 21:57:57 -0500 Good day sing123. Sorry that you are dealing with melanoma and all of the pharmaceuticals. I’ve been through the same route as you. Most likely your adrenal gland has not survived. The hydrocortisone that you are taking should equal what your body previously produced. I am on 20mcg of synthroid plus 5mg of Eliquis (blood thinner) each day. L…Read more

]]> efc4a97eb35217b1aa2a04007f2b0619 Johnjk04 replied to the topic Medical use of Cannabis in the forum Caregiver Community https://forum.melanoma.org/forums/topic/medical-use-of-cannabis/#post-274223 Fri, 12 Feb 2021 23:47:40 -0500 Hello again Jessie. My wife told me that she searched online for a psychiatrist/ marijuana. You will get a prescription for the marijuana dispensary. At the dispensary, you will speak with the pharmacist and she will give you all the information that you need. I feel that your oncologist would be pleased getting Dad off of the opioids and then put…Read more

]]> 9e550d4f488f5846ab395df46ada7dd4 Johnjk04 replied to the topic Medical use of Cannabis in the forum Caregiver Community https://forum.melanoma.org/forums/topic/medical-use-of-cannabis/#post-274208 Thu, 11 Feb 2021 14:35:14 -0500 Good day Jessie. It makes me sad to see the troubles that your Dad is experiencing now. Back in 2012, it looked like my life would be ending due to melanoma. At that time, one of our sons passed away. My wife used prescriptions to help her cope for a couple of years. Then she tired of the side effects that she was receiving. She went to a…Read more

]]> 7fa071e5f8b542cd642b6eb04b5384eb Johnjk04 replied to the topic Blood blister versus Nodular Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/blood-blister-versus-nodular-melanoma/#post-274142 Sat, 06 Feb 2021 19:25:17 -0500 A long time ago, I had a melanoma recurrence. My primary doctor told me not to worry about it, it’s just a bug bite. Had it removed a week later, melanoma.

Be careful !!! What do they call the person that graduates in last place at med school?

 

 

 

 

Doctor

]]> 44cc304054f8e3b0ce0bb7ce951656b3 Johnjk04 replied to the topic What to expect during annual skin check? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/what-to-expect-during-annual-skin-check/#post-274125 Thu, 04 Feb 2021 02:04:23 -0500 Jess, I do not like the way you worded that “And maybe next time I’ll try to get an appointment with a doctor instead of a physician’s assistant.” We all know how deadly melanoma can be, don’t settle for another less than the best care. If you or your insurance is paying for the visit, demand to see a dermatologist.

I started my melanoma…Read more

]]> 3e2ddd6ab6199d4599f7679c472d9f44 Johnjk04 replied to the topic Help with pathology report in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/help-with-pathology-report-10/#post-273898 Thu, 14 Jan 2021 01:58:01 -0500 Danielle, sorry that this melanoma is going to cause some disturbance in your life. The good news, spitzoid is less aggressive and less fatal as conventional melanoma is.Also with your 0.5 melanoma removed, looks like clear sailing from here. Stick with your dermatologist on the schedule that she provides you with. I almost want to congratulate…Read more

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