MPIP: Melanoma Patients Information Page

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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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triciad's picture
Replies 2
Last reply 8/12/2019 - 1:09pm
Replies by: MelanomaMike, gopher38

Hi all,

A friend spent me this link. I have to say that I have been really sick this year and haven’t followed the latest treatments. I’ll leave this in your, much more knowledgeable hands.

https://unitedwithisrael.org/israeli-researchers-develop-successful-vacc...

Thanks for all of your help over the years.

Be well and continue the fight!
Tricia

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ed williams's picture
Replies 2
Last reply 8/12/2019 - 1:00pm
Replies by: MelanomaMike, Bubbles

Last week I posted that NKTR-214 + Nivo drug trial was given FDA fast track approval, only to have the company announce this last Thursday that some of their patients got "suboptimal" drug in two batches. This is just crazy shit, I can't imagine being in the trial and finding out that you got "suboptimal" drug. I came across these two links on the twitter feed from Dr. Jason Luke who shared the news on Aug 8th to his followers. https://www.investors.com/news/technology/nektar-stock-halted-biotech-co... https://twitter.com/jasonlukemd

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201Don's picture
Replies 9
Last reply 8/15/2019 - 7:28pm

I have been doing pretty well with the Opdivo infusions.... 5 down and 7 to go.
Other than fatigue, nausea and a little finger numbness I have not had any issues.
This week I have been pretty sick. I thought I had picked up some sort of upper
Respiratory bug. symptoms have been chest pain with deep breaths or coughing, etc.
I have a hair trigger urge to cough which is very painful. All week I have had sweats
and chills when trying to sleep (not normal for me). Doctor believes it is Pneumonitis
which is inflammation of the lining of the lung. He called in a script for an inhaler to
try to calm the coughing trigger. If I don't improve they are talking orL steroids.
Wondering if anyone else has run into this, and did it cause the infusions to be stopped.
I am concerned....
Don

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MelanomaMike's picture
Replies 7
Last reply 8/12/2019 - 2:03pm

Hi Family, my 2 brothers are flying me out to Texas (Laredo) after the 15th when I see Dr. Jang, I haven't seen one of the 2 since like 2012! (Daniel), the other, Tim I saw recently last year before my lung surgery but nevertheless it will good for me to get the HELL out of California for a few days! Plus I'll get to see my nephew, 17 year old Tony who is almost at a professional level at electric guitar, has won a local AND a State Championships! His music style is Heavy Metal or if ya know this genre, Progressive Metal, has a lil band going so, can't wait to see him jam! Last I saw him he was about 9 months old!... I'm happier then a dog when its owner gets home!...I'll post while I'm there, I'll leave the 21st.. wish I could see our MRF brother Tex! He's more Mid-North Texas, I'll be at the very bottom (southern) Texas....hope all is good with youse this weekend, I'm feeling ok, side tumor is REALLY letting me know hes there!!(Naproxines help!!) , baseball size now...I need a TIL shot! or that DAMN surgery they cancelled on me!.....love ya all, I really do...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Gene_S's picture
Replies 1
Last reply 8/10/2019 - 12:00pm
Replies by: Gene_S

“All Disease Begins in The Gut.” - Hippocrates.

https://www.smithsonianmag.com/science-nature/how-microbiome-could-be-ke...

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

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Casitas1's picture
Replies 3
Last reply 8/11/2019 - 8:46am
Replies by: Bubbles, Casitas1

An Elegant Defense by Matt Richtel. An interesting read that gives both patient and physician perspectives.

Best, Paul

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GeoTony's picture
Replies 3
Last reply 8/12/2019 - 12:30am
Replies by: lkb, SOLE, Bubbles

Hi all

It's been awhile, so following my genetic testing and the discovery of a CDKN "amplification" I've been on Palbociclib for the last couple of months as part of a phase 1 trial, in fact round 3 started last week.
The results haven't been startling, but steady, following my last scan at the end of July, everything is still stable, in fact very stable, nothing new and the old stuff is still the same size, the potential side effects never materialized, all in all, I've become boring. I'm not complaining, it's good to be boring, when your oncologist only spends 10 mins with you once a month, its a good place to be.
Also as a bonus one side effect has been to reduce my cholesterol so I've been taken off my Statin, in fact my cardiologist is concerned because its too low!

So really just a quick update, as others have encouraged, get genetic testing if you can, it could make a difference.

Good luck to all and keep fighting

Tony

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2019 - 2:40pm
Replies by: MelanomaMike

Hello,

I recently was diagnosed with colon cancer and had the tumor removed. They screened me for genetic testing, but the only thing that came back positive is the CDKN2A gene (associated with melanoma or pancreatic cancer). I have a strong family history of polyps and colon cancer, but my uncle (who is on that side of the family) also has melanoma. Since this is a new gene of uncertain significance to my issue, I was wondering if anyone else with this gene has also family history or relations to colon cancer or polyps. They will be sending me and my family for research, but I am curious to see if anyone has a similar story.

Thank you!

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richard24's picture
Replies 9
Last reply 8/9/2019 - 10:42pm

Hello everyone! First and foremost I would like to thank everyone on this forum that has contributed to increasing my knowledge about melanoma. I would not feel as confident about what I am dealing with if I did not have this forum to read about what everyone is experiencing.

A bit of history about me. I was diagnosed last month with Stage 1a melanoma in my forearm. 0.2mm Breslow, Clark Level 2, no ulceration. I had my WLE last week, just received my results showing there was no residual melanoma identified. Although I know I am very fortunate to have caught it before it spread to other parts of my body, I am terrified of what this can mean for my future. I have always been very active and participate in organized team sports regularly. I have always felt as if cancer was not a possibility. This has brought me back down to reality and is beginning to cause moments of panic.

Unfortunately, I have not been able to have a conversation with my dermatologist due to her going on leave the day I received a voicemail letting me know my biopsy came back positive for melanoma. My surgeon has not been responsive when attempting to contact him for further information. Much of what I have learned has been through this forum and searching online(I know this is not the best method for acquiring medical information, but was able to get some answers when no one else was available).

I have some questions I hope I can get more information on from people who are more knowledgeable than me and/or are going/have gone through the same as I am at this time.

First, from what I read online the 5-10 year survival rate for Stage 1a is in the high 90's percent and the rate for recurrence is below percent. I could not find much for survival rate after ten years, does this mean that after 10 years the survival rate continues to stay in the mid to high 90's percentile?

Next, as I think about the future with my family, what would you recommend when it comes to taking beach vacations during the winter months? I understand it will be important to wear protective clothing and hats, wear sunscreen, as well as avoiding the sun between 10am-4pm. Will taking these trips increase my risk of a recurrence or a second melanoma? For those that have traveled after being diagnosed, any tips you can provide to make the vacation less stressful and more enjoyable?

Finally, I currently have Kaiser. From what I have read on this forum, it can be difficult to get approved treatment outside of their network and they seem to lack melanoma specialist within their network. I am very pleased with the care I have received from Kaiser over the years, but have never had to deal with something like this. Now that I have been diagnosed with stage 1, would it be advisable to begin looking at a different health coverage that will allow me to see melanoma specialists in So. California? Or was it caught early enough where I shouldn't worry too much about it?

Thank you for taking the time to read this and allowing me to vent.

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studiodad's picture
Replies 14
Last reply 8/10/2019 - 6:34pm

I will soon have to face decision on immunotherapy or nothing for stage 3B metastatic melanoma. My research suggests that the potential side effects balanced against the chance of success make it a wash. I am healthy except for the cancer diagnosis and without any cancer symptoms. I am 74 and concerned about taking treatment that may substantially reduce my quality of life while offering little hope that longevity, with a quality life style, will actually be increased. Any ideas.

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tedtell1's picture
Replies 4
Last reply 8/11/2019 - 1:10pm
Replies by: SOLE, MelanomaMike, lkb, tedtell1

Hi everybody;
I haven't posted in a while, PTL, been NED for over a year. July scan continued to be clear. I do have a bit of an issue though. In the last week, an area has appeared just barely on my original WLE scar. It is not like a mole, It is bright red, has two bumps and is somewhat painful/sensitive.
I am attaching a picture:
[url=https://postimg.cc/FkhXx1sb][img]https://i.postimg.cc/FkhXx1sb/scar-Augu...

I think that link should work....
I guess you all will let me know. Not sure whether this is just me being paranoid or a real issue. Interested in knowing what y'all think.
Thanks,
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Hukill's picture
Replies 8
Last reply 8/11/2019 - 11:47pm

After starting with 7 tumors in my lungs in 2016 I had scans last week and have been NED for 2 years now but in July I did have a melanoma spot removed from my right arm, in SITU. Had second surgery to remove more even though I had 1.5 mm clear margins in the biopsy. I feel bad for posting this as so many on here are going through tough times now but at the same time I want to show there is hope and for some the ipi/nivo does work and fear not the side effects as they are better than melanoma. It has been 1 year since I completed 57 treatments, 5 combo and 52 nivo, and I am still dealing with side effects but no melanoma.

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tealD's picture
Replies 10
Last reply 8/14/2019 - 6:14pm

I was diagnosed with Stage 1A Melanoma about a week ago. I just received my surgery to remove the Melanoma on my back two days ago as well. Although I believe the operation was a success I am still terrified of Melanoma. My entire life I was not a fan of sunscreens. I never really wore them, I just attempted to stay in the shade, and wear extra clothing. Although I would say I have had 1 very bad sunburn and two bad/moderate sunburns. Now that I was diagnosed I am in complete freak out mode. I have moles all over my body, and I keep looking at them in disgust believing that the dermatologists have missed them and that they are currently infecting my body as we speak. I also have moles in parts of my body that have never seen the sun before such as my scrotum and my left butt cheek. Most of my moles look flat beside the ones on my abdomen main body which all seem to be raised. I have also started to notice small black dots all over my arms which I had always thought were freckles rather than moles but now I am not too sure. I received my surgery from the VA in Palo Alto and will be seeing Dr.Sweeter's Melanoma clinic sometime next week. I also find it an incredibly hard time to get the VA to schedule appointments for me. I have asked for a social worker, brain MRI, chest X-ray, and an oncologist yet have received no phone calls over the matter. They are treating this stage 1A as something that is already solved and does not need further attention. I believe they are even saying I should only be scheduled for 6-month dermatology appointments when I thought the standard practice was every 3 months if diagnosed. I also have been wanting to leave the State of California ever since this diagnosis. This state is just entirely too sunny and really isn't meant for white people of my complexion, but the pay and the healthcare I receive out here is pretty phenomenal compared to when I lived in Georgia, and Florida. Does anyone have any advice about my situation? I know its not the worst, but I am still terrified. What clothing do you guys recommend to wear? I have always worn shorts, and a short sleeve t-shirt with a hat and sometimes a neck guard. I hate pants but now I guess I will have to wear them even in the summertime. How do you guys enjoy hiking, and the beach after your diagnosis? Sorry about this rant but I am terribly worried about everything still.

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/8/2019 - 11:54pm
Replies by: MelanomaMike, askingforafriend, Bubbles, Anonymous

Recently diagnosed with aggressive stage IV. Spread to multiple organs, bones and spine.
Please share any advice for treatment and supplements.
Doctors have not yet given much hope or provided a treatment plan we are happy with. We want to fight this.

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MelanomaMike's picture
Replies 5
Last reply 8/8/2019 - 10:23pm

Hi Family, hope you all are doing good or atleast Stable!
Well, im just gunna focus on Dr. Jang & his team out in Bum Phuct Egypt, i mean Riverside (here in California).
I really hate to announce this that Dr Hamids office of coordinators have STILL not returned my repeated calls after me being told they would! They know my situation of not having "their" form of Insurance & i asked for a simple consultation and they rambled off 3 or 4 different "Cash" prices, $750 (with a first time discount of 40% which is $450 and the other 2 prices that excludes the 40% discount so i said quote:: Jasmin, im at a possible end here, my Kaiser oncologist believes i may have less then a year if i dont find a good treatment that works this time, im desperately needing to see Dr Hamid for his Melanoma expertise, im willing to make payments, and get my insurance straightened around to your liking, She said she understands and shell speak with Dr. Hamid, this was last Friday Aug 2nd, and still no reply, iv left 2 messages and im Done! I get it, No Money No Honey thats fine, im focused on Dr. Jang and his team now, Aug 15th is next week im approaching with an open mind at this point, lets hear what this onco has to offer....Im done with the whole stressing to see Hamid, and besides, iv been speaking with Jasmin now for over a month, calling her periodicly to give her the latest scoop on gettin a Referral out of Kaiser (which was Denied) she has my phone number, she knows my situation! Not once has she tried to pull strings or work with me to get a consult! Im DONE!.....Love ya guys...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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