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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BillB's picture
Replies 11
Last reply 12/13/2017 - 12:00am

Hi to everyone and thanks to all for posting information regarding their lives and treatments, it has been very helpful to me. I entered the melanoma community on 11/1/2016. I had a blood blister like growth removed from my right temple on Oct 26, 2016 and met with extreme shock on 11/1 when I was notified it was a nodular melanoma ( 5 mm, ulcerated, neural and vascular invasion, mitotic 15). Immediately set up with local oncologist and completed PET scan on 11/9/2016. I started researching melanoma immediately ( not hard to do when you’re not sleeping) and identified that one of the best cancer centers was in NYC and only four and half hours away. To help my decision to be treated there easier was the fact I have two sons that work in Manhattan and one of them lives in manahatten and the other just North of the city.  I completed surgical, oncologist, and plastic surgeon consults to complete the WLE  before the oncologist in Syracuse could schedule my PET scan. The plastic surgeon who completed the original surgery did obtain clear margins, just not wide enough. The PET scan on 11/9 came out clean, no activity identified and I also notified the oncologist in Syracuse that I had decided to be treated at MSK.  

November 17 WLE and skin graft. All went well and I wore the bolster well. November 28th met with surgeon and unfortunately they identified in situ melanoma along the 6-12 margin and we needed to go back and do it again. Surgery scheduled for 12/8, and if pathology results are clear the graft would be completed on 12/12. Notified of clear pathology on 12/9, graft completed 12/12 and I wore the bolster well again. Interesting to go home with a hole in your head for 3.5 days. Slept in a recliner for 38 days.

February 2017 CT scans completed, nodes identified on thyroid, ultrasound, then ultrasound with fine needle biopsy, no melanoma.

Early April I felt a small node above my jaw. Future trips to MSK, CT, MRI, ultrasound, ultrasound biopsy, melanoma has surfaced again. May 6, parotid gland and right lymphendectomy completed. Parotid gland and 35 lymph nodes removed, 3 lymph nodes on the parotid gland (matted) and one node in the neck came back positive. Oncologist recommended radiation to head and neck to try and prevent future head and neck issues. 

June 6th to  July 6th 48 gray in 20 installments. Made it through the radiation pretty well. Standard expected side effects. Prefer not to do that one again.

CT scans the end of July identified 5 lesion on right lung. CT guided fine needle biopsy completed on 8/9, results 8/10 confirmed what was already expected. Received first Keytruda treatment on 8/10, right after receiving pathology results. I’m BRAF +, needed to add that now.

My oncologist wanted CT scans after 8 weeks, prior to my 4th treatment and we received some highly unexpected but fantastic news that all of the lesions on my lung had resolved and none were visible on the CT, and the two lymph nodes under my jaw bone that were enlarged had also resolved back to normal. Just hope for me and everyone else that it continues to work. I have lots of questions but I’ll save them for another day.

Leaving for MSK tomorrow morning to complete infusion #7 on 12/12.

My side effects so far have been highly sensitive skin under my arms, arm pits, and different parts of my body. I had two very small rashes that didn’t itch but lasted over a month each. Knees, hips, shoulders and hands ache but ibuprofen helps a lot. Fatigue comes and goes and had some difficulty determining where the fatigue from radiation stopped and the Keytruda fatigue started. Most significant side effect is my right jaw bone. The combination of parotid/ lymphendectomy, Head and neck radiation and now Keytruda prevents me from opening my jaw well. A lot of the side effects diminished significantly after infusion 6, especially the joint issues except for the jaw.

Overall it was a long year, with 6 procedures (7 if you include knee surgery on 9/22/16), radiation and now immunotherapy. I have finally been able to begin doing all the things I love to do. I have had great support from my family and friends. Now dealing with the issue of when to stop Keytruda, the balance between current mental need to continue and potential permanent physical issues that could occur. Next CT scans will be 1/25/18. The oncologist I’m seeing right now while my oncologist is on leave likes to complete the scans somewhere between infusions 8-10. Three weeks later than my normal schedule. He would also recommend going off after 6 months, I’ll evaluate that after a couple more good scans as long as blood work remains good.

Well, I went way longer than probably needed but if anyone has questions please ask. The staff at MSK has been fantastic. I have a lot of scars, but my surgeons work was fantastic. An additional shout out to Celeste, I visit you site frequently and appreciate all of the information regarding melanoma. I research it all. All of the sewing blogs is just frosting on top.

Thanks tomeveryone for taking the time to help, happy holidays and good luck to everyone. Please forgive typos.

Bill

 

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Anonymous's picture
Replies 9
Last reply 12/12/2017 - 1:57pm

Husband began keytruda every 3 weeks in Jan 2016, received infusions evwry 3 weeks (with no side effects other than some fatigue). Was off keytruda for 3 months due to brain tumor which was successfully removed 100 percent.
Now has been back in keytruda for 6 months and has experienced very severe swelling and joint pain. The doctor says it is a side effect. He is on oxycodone, morphine and a symthenic steroid..however the pain is still dehabilitating. He is now disabled. Anyone else experienced this? Thank you in advance and God Bless.

Pam anderson

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baesill's picture
Replies 5
Last reply 12/12/2017 - 9:28pm

Because that’s what I just got. What is the best I can expect? Is two year survival even possible now? Has anyone received any good news after 9 tiny brain mets were discovered after failing ipi/nivo while on vem/cobi...and I’ve just had two doses of pembro thrown in for good measure. 

9 just feels like so many, right? 

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Polymath's picture
Replies 25
Last reply 12/14/2017 - 12:50pm

Aloha warriors, sorry for my absence from the board.  I needed time away from thinking about the melanoma and just get on with life.  

I just got results from my most recent scan, and I am celebrating a full year since my last surgery which cleaned house of my major tumors.  All clear, with no new progression.  I have been off all medications, for the year, and want to offer a message of hope.

Old-timers know I battled hard for four years.  I did it all.  Surgeries, radiation, targeted therapies, and immunotherapies.  It seemed nothing would stop the beast.  I was just beating it back, waiting for the next drug treatment approval.  Right up until my biggest surgery last December, which removed my spleen, engulfed with a grapefruit sized tumor, plus two other abdominal tumors, I had mostly non-stop progression. 

I have been lucky in that along with good care, my tumors have not attacked vital organs, but had non-stop invasive tumors pop up in many areas.  I have plenty of scars and damage, but here I am, feeling great when the statistics had me most likely dead by now.  It seems that although I was thought to be a non-responder to most everything, maybe, there is some lasting impact from the treatments.

Rather than get into any more details, I want to just thank those who supported me, and shared their wisdom and experience throughout these years.  If not for the advice I received here, I doubt I would be in this wondrous position.  I also feel so badly for those we lost, and hope their families are doing as well as possible. I hate this insidious beast.

I've been lucky, and have been my own advocate for my care.  Not fallen for the natural remedy peddlers who prey off of peoples fears.  I found a wonderful specialist who saved my life.  While this has just been one year, and I know I may need to go to battle again someday, I just want to wish all my brothers and sisters here, a wonderful holiday season.  Hang in there, be strong, and be well.

Gary

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/10/2017 - 9:03pm
Replies by: Anonymous, Jeff_in_FL

I feel guilty posting on this board. I’m sorry, but I need some persepective on my issue.

So 3 years ago I had a mole on my foot. It was blue, on my heel, solid, symmetrical, it looked like I stepped on a marker. Anyway, over a course of time it grew big. I didn’t witness this growth but I noticed it one day. I was in a panic. The mole grew bigger, and was now brown. I don’t know how, but it fell off. It more so peeled off. It left a perfect hole and regular skin was underneath. The hole healed up and never grew back. At the time I told some adults about this (I was about 12) and they reassured me I was fine. During the same time I made skin inspections noticing two ugly moles. One on the back of my arm and one on my lower back/love handle area.

Ive been told I have had these for my whole life, and I believe that, but they’re ugly.

https://imgur.com/gallery/UaT3c

Top: arm

Bottom: back

I also have worrying doupts on wether they have changed or not. I’ve been taking a record for the past 2 weeks and no change I believe. I’m going to a dermatologist in a unknown amount of time, possibly months. In the mean time I found out that swollen lymph nodes in your groin can mean melanoma, I’ve had one for 3 years (not that it appeared 3 years ago just that I’ve noticed). I also have one in my neck. Also, under my mole on my back I have a fatty lump that’s asymmetrical to the other side, yet again that’s been no there’s forever. The structure feels similar yet the one side feels bigger.

I'm very concerned and as a minor there’s not a lot I can do for myself except wait.

Anyways sorry for appropriating your forum :(

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ToddC's picture
Replies 4
Last reply 12/14/2017 - 6:12pm

Hi long term melanoma survivors. Time to chime in on the old MPIP board... let us know you are still alive and kicking!  I remember this board from years ago before it became run by the "MRF" which I'm not sure I believe in anymore but I'll avoid that discussion here.  I'm sure there are a lot of people like me that never accepted the drugs and found some natural ways to control this condition so let's hear your story again and give people here some hope.

I had stage 4 mel from arount 2008-2013 when some lifestyle changes I made seem to have made my condition go away and to my docs amazement it has not come back since. I recently had bloodwork and want to report back, no indicators of cancer and vitamin D level of 55. LdH below threshold, WBC and CRP is totally normal, everything looks perfect at age 53 now, thought I would die in 2013 but I'm still going strong. You can survuve this thing, your body has amazing recuperative ability. You just have to give it what it needs to win this fight baby!

Good luck everyone, I will spare the details in my case but I want to hear from anyone like me out there who made it through the worst of this and lived to tell about it.

Todd Conrow

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Tjvcc's picture
Replies 3
Last reply 12/10/2017 - 12:14pm
Replies by: jymarks2011, Becky, Bubbles

Hi,
30 / Male Boston MA
I posted 5 weeks back when I had my Spitzoid taken out. The doctor thought it was nothing, the path reports came back conflicting Atypical Spitzoid Unknown Biological / Spitzoid Melanoma.
Unfortunately it 5 weeks later, I have one of my 4 nodes in my groin  positive. The path says Sentinel lymph Node #1 Metastatic Melanoma is observed with levels and positive for strains 2 100 mart 1 MITT, -- HMB45 is Negative Tumor is present as scattered cells (they indicated there was not a lot.
Just looking for experience. I have heard the prognosis for Spitzoid melanoma is a little batter than traditional. I also have a pathologist who seems to think this could still be benign because the HMB45 was negative, I am sending to his lab to review.
Any comments would be great. treatments or stories?

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/8/2017 - 4:56pm
Replies by: Bubbles, k311335, Anonymous

Hi, all

My mother is ill. It all began with a heel. Depth more than 4mm. The operation was removed in June 2017. Histology showed melanoma. At the moment, the heel heals well. At the moment, there was a positron emission and computed tomography survey. The examination showed points up to 8mm in the lungs up to 10 pieces. There was a re-examination of the same results where they indicated that there were more of them.
The attending physician prescribes 4th degree and chemotherapy therapy.
At the moment, Mom feels like a good blood test is good.
Mom does not want to do chemotherapy therapy. Since the survey data is different and there is no single picture. Doctors do not want to deal with the patient.
An additional examination of the radiologist showed nothing.
Ultrasound of the lyophotic system of the inguinal region revealed nothing.
The question is, can doctors make mistakes?
Are there any specialists who can see the results?

Best Regards

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My husband, 64, had a pink bump on his leg that he has had for many years, which derm said skin tag.  It began to grow so I made him an appt to have it removed.  They sent it to path lab and the report was very confusing.  The lesion passed the FISH test as no melanoma but because of strange archtiture of the sample they indicated it should be treated as “atypical BAP-1 Deficient Spitzoid Melanocytic tumor of uncertain malignant potential.   It was listed as type nodular and BAP-1 deficiency at least 5.0 thickness and IV invasion level.  We had the excision done today as well as a SNB and am going crazy reading what this might be on the internet.  I have a call into the surgeon to ask if he can split samples and send to 2 different labs for review.  Has anyone heard/seen anything like this?  Our dermatologist indicated this was rare to have several pathologist review and come up with conflicting recommendations.  Help, I am going crazy. Thank you

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BjHagins's picture
Replies 4
Last reply 12/8/2017 - 11:33pm

On May 5th of this year I had a scalp melanoma removed along with 5 lymph nodes.  All lymph nodes came back clear.  I go back on Jan. 3rd for a lymph node check.  Last week I noticed I have a large lump about 4 fingers wide slightly below where a lymph node was removed on my neck, location is more back shoulder but towards the neck if that makes sense?  Not sure if this could possibly be a lymph node?  My  sister had Lymphoma and I distinctly remember her nodes feeling like marbles under the skin.  I would just call and have it checked but my husband started a new job 2 months ago so we are waiting for the new insurance to kick in, thanks in advance!

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Jenine's picture
Replies 3
Last reply 12/11/2017 - 12:27pm
Replies by: beans920, BrianP, mrsaxde

Hello dear friends,

I hope this post finds you and your love ones doing well.  

My husband has been participating in a 2 year clinical trial known as MK3475 - Keytrudaand Peg interferon.   He has two tumors near the original site, one in his sternum and the other in a lymph node on his neck. Over the past 12 months he has not developed any additional tumors and the tumor in his sternum has shrunk by 13%.   I’m feeling like my husband’s response should have been better after 18 treatments of Keytryda.  

I can’t help think there might be something else worth considering as a course of treatment. Don’t want to rock the boat with Dr. Kirwood but feel a Meeting should be arrangec to discuss progress.   Hard to sit back and wait when the response isn’t that significant. One thing I’ve learned with this disease is you must stay ahead of it and control tumor growth. 

Any advice or guidance would be appreciated. 

God bless!

Jenine, Pittsburgh PA

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Well, I went to Johns Hopkins this morning to find out what was in store now, after getting my scan results showing increasing cancer in my lymph nodes. I was unsure about continuing in this trial if they wanted me to, since it was becoming obvious to me that I am getting little if any benefit from it. When I met with Dr. Sharfman it turns out my decision was made for me. Apparently he appealed to Bristol Myers Squibb to treat me for one more cycle of 4 infusions, but since I had shown progression two scans in a row, they said no.

He told me that he wasn't crazy about radiation followed by Keytruda, like my local oncologist had mentioned in the spring before I started this trial. He said that we could do oral chemo -- I forget the name of the drug -- which he said he has gotten good responses to from some other patients. But he said he thought my best option, and best chance at regression, was to participate in the TIL trial at the National Cancer Institute.

So we agreed to proceed with that, and he said he would set the wheels in motion. And that's where things stand with me at the moment. I'll admit to being a little frightened of this -- it sounds like I'm going to be in for a month or so of extreme unpleasantness. But I've read about this treatment and I'm hopeful that it will be the one that finally works for me.

As usual, I'll keep you all filled in.

-Bill

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TexMelanomex's picture
Replies 5
Last reply 12/10/2017 - 12:16am
Replies by: TexMelanomex, Ed Williams, Anonymous, stacijane, iskitwo

Hey Warriors!!

I hope you are all staying in the fight and living life as well as you possibly can!

I wanted to give y'all a quick update on the PV-10 progression so far. I received my most recent (the 3rd) treatment on the 21st of November (another 15mls of PV-10 and another round of Pembro). 2 days ago (so 9 days after the last intralesional injection) the tumor site began to ulcerate in two spots. At first, it was just a few drops of PV-10 (and maybe some blood), but when I woke up this morning it was game on! Completely saturated the 5x9" gauze bandage and I've had to change it twice today (soaked through and into my work this afternoon...can you imagine the task of getting a known clothing dye out of a light colored shirt!!).

Now my cursory understanding, of the very preliminary data, regarding PV-10 is that this is a good thing. Finally an application for ulceration in Melanoma that isn't bad! The treatment team says this will likely continue until everything has drained at which point either the necrotic tumor will try to expel itself or they will need to remove it (yes, gross, I know but the only good tumor is a dead tumor!) I suspect I have a little way to go since I've had 3 rounds of injections (15mls each) so that's 45mls of this pretty purple tumor punisher that has been injected. I assume I've absorbed and "processed" several mls thus far, but it still leaves a lot to go. At the risk of nauseating everyone, I'll post an update in a few more days to let you know how this is unfolding. 

One interesting thing about this, I don't need a scan to tell me something is going on or not...something is definitely going on. Whether this is a good, great, or just a messy thing...time will tell. I have to say, I remain optimistic that this is a decisive battle being won, even if only in one location on the battlefield. 

I keep all of you Warriors in my prayers, that you stay strong, stay calm, and as we would often say in the Army..."Charley Mike" (translated =  Continue Mission!)

Until the next installment. 

Tex

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Lil0909's picture
Replies 2
Last reply 12/5/2017 - 8:00pm
Replies by: Lil0909, geriakt

Hi All!  It's been a while.  This board was so helpful to me in the past, but I haven't visited in a while.  Kind of a long story.... but my immediate question is, does anyone know about trying to conceive and having a pet scan?  I'm having some "issues" and need to get a pet scan, but I'm also trying to conceive, rather unsuccessfully so far.  I'm wondering if I have the pet scan prior to expected ovulation (sorry to the men on this board :) ), can I still try to conceive this month?  Or rule out the whole month?  

I feel like I need to do a separate post, b/c i'm not doing so hot lately, but here goes.  I'm 4 years since diagnosis, Stage 3a, melanoma in right arm, complete lymph node dissection.  I was diagnosed at 29 (female, if you haven't already guessed that).  I did a year of interferon, and had all the horrible side effects.  I still struggle with certain side effects (fatigue, thyroid) and really expect to forever ugh. 

Most recently - in early august - I was at the gym and was holding a heavy weight and it felt like someone stabbed me in my arm pit.  It hurt non stop for 24 hours.  Since then, i still get the knife stab feeling when I move wrong on exercise.   I've tried everything I can think of this work on this.  Rest, ice, graston, stem, massage, etc. We thought torn scar tissue, and I was thinking maybe scar tissue rehealed around a nerve or a surgical clip moved or something.  I had an MRI, which showed some other shoulder issues, but nothing really on this issue. Any ideas?  

ugh - I just need to vent to someone who understands. I HATE Melanoma!!! I know so many on this board are going through so much worse than I am. I hate melanoma for all of us.  Even when I'm NED, it just seems to constantly haunt me! I just want to be able to be able to as social as I want without fatigue causing me to skip out of events, work out when and how much I want to, not have brain fog, have a baby, not have constant anxiety, is that too much to ask? Santa??? I just want to be able to live a normal life.

I want all of us not to have to worry that every little anomaly in our bodies makes us immediately jump to worst case scenario.  I want all of us to be able to whatever we want, that others take for granted. That's my Christmas wish for everyone here. Happy Holidays to everyone!! 

PS - I think i'll be upping my anti anxiety meds tonight :) 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/10/2017 - 6:57pm

Dear all,

Hope everyone is fine,

I have several questions because I am a bit lost regarding Sun protection. 

Indeed, after having an atypical Spitz tumor, Dermatologists told me that I have to protect my skin, because I have an increased risk of skin cancer.

However, every Dermatologist does not same the same thing to me. 

Therefore, I would like your advice that I can keep on a daily basis.

I have a very good phone application which gives me the uv index on a daily basis.

But, if I understand, the protection is not the same depending on where you are living. If you live in London, during 6 months, the uv index is very low, most of the time below three, so sunscreen is not necessary, but if you live in Australia, you should use sunscreen everyday right?

When the UV index is at 3 or above, I put sunscreen (High SPF) on the parts which are not covered by my clothes.

I try to go the beach when the UV index is below 3, and I put some sunscreen, even if one of my dermatologists told me that I am safe.

. On the internet, it says that we have to avoid the sun during midday, but I work in the hospitality industry, I am a manager, and I have to oversee many outlets, and one is the pool area. So, during summer, I have my shirt, black pant, and I put some sunscreen on my face.

However, I am a bit lost, I do not want to be paranoid, but I avoid the sun because I am bit scared. But I know that many people with melanoma enjoy vacations in Hawai, Miami and so on, but they are sun smart. 

Can you explain to me?because even on the internet it is not clear.

 

Thank you very much,

 

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