MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Hukill's picture
Replies 6
Last reply 2/5/2019 - 7:25pm

I have been 18 months NED and 6 months since my last nivo.  Getting my port removed in a couple of weeks and moving scans to 3 months now. Side effects have not gone away but better them than melanoma. 

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mrsaxde's picture
Replies 6
Last reply 2/6/2019 - 8:48am

Hi Everybody,

Yep, here I sit, doing what I've been doing -- waiting. This time it's waiting for 30 days after my brain radiation to screen for another trial, probably the anti IL-8 trial.

Of course I've been scouring the internet for info about the trial and the new antibody they're testing. I've heard really nothing about anybody else going through this trial except for a post here by GeoTony (I think?). Dr. Sharfman told me back in December that they are "very excited about this trial." After doing my digging I found out why. In the phase 1 trial, a very small cohort of 15 tolerated the medicine (BMS-986253) with minor or no adverse effects, even at the highest dose levels. But most important -- the trial produced a reduction in IL-8 levels, and administered as a monotherapy 11 of the 15 patients achieved stable disease and progression free survival at 24 weeks was 73%.

They're hoping this antibody, administered with a PD-1, will bring about renewed response in those who had a partial or no response to a PD-1 in the past. A link to the abstract is below.

This may be the answer those of us hanging on to those last few threads at the end of our rope have been waiting for.

-Bill

http://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.3091

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smiller's picture
Replies 3
Last reply 2/5/2019 - 8:53am
Replies by: smiller, cjm22, Edwin

 Diagnosed Stage 4 Melanoma 02/17

 Three rounds of Opdivo/Yervoy

 CT Scan showed NED 01/19

 One stubborn spot in back started aching 01/19

 Oncologist referred us to an Orthopedic Surgeon. He wants to do an MRI and Bone Scan.

 Why do I feel like the nighmare of 2017 is returning? What does an MRI show that can't be seen with a CT Scan?  Does melanoma metastasize to the bones? 

Any words of wisdom and encouragement greatly appreciated. 

Thank you and God Bless,

Jim's wife

 

 

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Hi all. Can I please have some feedback from folks who know about lymphocytes? 

Both my lymph number and lymph percent have decreased into the abnormal low range. What is this indicative of? I have had 10 monthly treatments of 13 total on Opdivo. Prior to this, all of my lab readings have been in the normal range. Also, I do not have vitiglio, which some of you have said links to a positive outcome on the Opdivo. 

I have opted against radiation at this time (just haven't been able to update my profile!) so that is not a contriibuting factor of the low reading. 

Thanks so much,

Cindy

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo

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Gene_S's picture
Replies 8
Last reply 2/6/2019 - 5:20pm

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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kpcollins31's picture
Replies 8
Last reply 2/7/2019 - 3:17pm

5 years ago today I went through a bowel resection to remove a fist-sized melanoma tumor from my small intenstine. Those were difficult days - progression from stage 2 to stage 3 and then to stage 4. They cut it out and we started the frequent scans. I have never done any treatment beyond surgery. Days became weeks and weeks became months. Now here I am 5 years later still standing with no evidence of disease. Those days in the past almost feel like a bad dream at this point. Now I spend my time looking forward. My oldest starts college in the fall. I can dream about retirement some day. 

I do not come back to this board much anymore but I still see some of the familiar names doing God's work providing encouragement, research, and hope for so many. I prayed that I would have the opportunity to come back here 5 years later and share some hope that there can be life after melanoma. So that is my message - for some of you struggling right now, do not lose hope. That next surgery or that next treatment or that next clinical trial treatment may be the one that does the trick. Stay positive and hang in there. 

Kevin 

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Oh friends! 

It seems Mel and his new buddy herpes cellulitis, is in a tag team match with my arm.  

I'm not sure how I managed to do this, (my family says I'm an overachiever) but the T-VEC injection site on my arm became very red, hot, and bubbly.  I took pictures of it, sent it to the Rock Star's PA and she told me to come in to the ER where they would give me antibiotics and antivirals.  Sigh!

Seems I have a very good of a case of herpes.  So much so it has broken out all over my elbow and upper arm.  Antibiotics and antivirals have kicked in and this morning it is not as red and hot as it was yesterday, but it hasn't shrunk at all. I've also got oral antibiotics and antivirals so that should do the trick.

I'll file this under the tag, "just when you thought treatment was easy..." 

Shalom,

Julie

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Zeb's Mother's picture
Replies 2
Last reply 2/2/2019 - 5:01pm

I was just diagnosed with Chorodial Melanoma a few days ago - I am 75 years old - I will see my doctor this Monday - when I got the original diagnosis, my doctor recommended Wills Eye Institute to see if I meet the requirements for a clinical trial. The treatment options sound scary and aggressive. Anyone out there have outcomes of treatments? Would appreciate hearing from you. Thank you.

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/4/2019 - 12:00pm
Replies by: Hukill, cjm22, Summer S.

Hi Folks, 

Can anyone share the experiences with combo yervoy + Keytruda ? My mom is starting her first infusion next week. I am really scared and making false wishes that I can escape this but the truth is I have to walk this path with mom to her recovery. She is so healthy I am afraid this will put her down. Please share experiences.

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Jubes's picture
Replies 17
Last reply 2/11/2019 - 1:56pm

Hi all

 

just checking in with you all. Had my three monthly scans and all clear!  We are moving to 4 monthly now. I have been on Humira for joint pain, so we were scanning a bit more often as it suppresses the immune system. 

Humira since September, and that has worked very well for me. 

Im back at work and did a month tour of Europe with a concert in a different city almost every night. 

So please to those of you going through a hard time, sometimes the combinations of treatments and surgeries really keep us going well for a long time. I wish you all wonderful recoveries and will keep on here to follow your stories

much love

 

anne-Louise 

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MichiganderMike's picture
Replies 7
Last reply 2/2/2019 - 10:57am

Hello everyone,

I am another newbie to the community but have been viewing the forum for the last month. January has been quite an experience, to say the least so I guess I will start there. My wife had made an appointment for our two boys to have their moles checked, I thought since I’ll be accompanying them, I’d have mine checked as well. After having a mole removed by the dermatologist at that appointment (December 2018, the 28th to be exact), I left thinking nothing of it, I’ve had moles removed before that all came back ok,not this time. On January 4th I was informed that it was indeed melanoma, 1.3mm, no ulceration, Mitotic Rate of 4. The dermatologist referred me to the University of Michigan cancer center to see a melanoma doc and surgeon, this was January 9th. Both informed me of the procedure I’d be undergoing (WLE and SLNB) and thought the chances of it being in the lymph nodes were about 10%, pretty good odds if your a betting man. Surgery happend two days later on January 11th and I was feeling pretty confident. As you can probably guess on January 18th I was told that the melanoma had made it to the lymph nodes, although just a trace (less than 1% in 2 of the 3 nodes taken. What a shock and a life altering situation, I went form stage 1b to stage 3 in 14 days. I think every emotion in the human body hit me in a matter of 30 seconds. On the 21st of January I was brought back to U of M for Ct scans of chest, abdomen, and pelvis, along with an MRI of head and neck. This was when it all set in for me that this was not a dream but very real, even though it was happening so fast. On January 23rd I was back at U of M for a follow up with my surgeon. Head MRI was good, abodoman ct had an abnornality that was confirmed to be a cluster of blood vessels by an additional MRI. Chest ct showed 2 small nodules (2mm and 2-3mm) which was explained to me that nodules are quite common in the human population. I was now a stage 3a. Surgeon suggested a course of action of ultrasound of lymph nodes every 4 months, along with ct of chest every 4 months, and scans yearly. At this point an observation approach.He also referred me to an oncologist to get their perspective. All of this in a span of 19 days, crazy. Had first visit with oncologist yesterday, who I wasn’t very impressed with and we looked over some guidelines and for my staging and other factors of my pathology reports, observation was one of the courses of action. Just wondering if anyone has any thoughts on that? With no sign of disease at this point I’m not sure if therapy will have any benefit over keeping a close eye on things. I guess this is the point where decision making becomes so much more difficult. Kind of a damn if you do, damn if you don’t senecio. Today has been 4 weeks since initial diagnosis. Everything has happened lightning quick. Right now the mental strain is the worst. I am a medically retired veteran that was retired because of PTSD, anxiety, and depression, so I’m sure you can guess how this adds to those factors. Mind is consumed with this and motivation is absent. Thanks for reading this long post and I look forward to hearing back from you. Thanks in advance.

Mike

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Conor2710's picture
Replies 9
Last reply 2/3/2019 - 6:59pm
Replies by: Bubbles, Conor2710, lkb, marta010, ed williams, RichInLife2, Anonymous

Hi I'm new here and my name is Conor, I'm a 26 year old male. I was diagnosed in November after almost dying from a brain tumor that had metastasized which they had speculated had traveled from my axillary lymph nodes on my left, all of which seemed to be cancerous and were removed on Dec 5th. After scans in November and brain radiation, I finally got on an Optivo treatment started yesterday. I also got scan results yesterday which show I have a 3.3 cm met in my liver, and a couple of smaller ones in my lungs as well as 3-4 on my upper left side. I fear I may also be developing another brain tumor based on the symptoms I've been showing. I just want some advice or something from a veteran of this disease. I'm so tired of listening to others and what they think is right, this is basically my last straw. I honestly don't think I have much longer

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barrydshaffer's picture
Replies 4
Last reply 1/31/2019 - 9:23pm
Replies by: kst, EllieS, Bubbles

Hi, My name is BARRY, and I have stage four metastatic melanoma. My last pet scan showed that my cancer is behaving itself. That’s good news. I have not had Opdivo for 2 months now. You can see from my profile that things have been going very well despite the fact that I have stage four. 

Anyway, what I’m dealing with is pain and swelling in my knee joints. My cancer doctor  sent me to a rheumatologist. He prescribed methotrexate which he said would take a minimum of three weeks at least before I would even notice any benefit. I have not reached the three-week mark yet. I have some friends who have been telling me how wonderful CBD oil is. So one night my knees were really bothering me so I decided I would give it a try. I did. Right now, the swelling and weakness and pain have spread to my left wrist,  my right shoulder and elbow, and my right ankle. And it seems to be worse. 

I was wondering if any of you out there have had any experience with methotrexate and CBD oil? My cancer doctor says that likely the spreading of the joint swelling and pain is still response from the Opdivo which she said stays in my body for 6 months. I hope I have not aggravated it with the CBD oil. What experiences have you had?

Dr. Barry D. Shaffer

”Read the Bible” 

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