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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Scooby123's picture
Replies 0

Hi guys,

Hope you all as well has can be, just a update 6 rounds keydruda had first scan and tumours shrunk by half. Apart from aching joints trips to loo coping well. Head clear thank goodness.

 

Been a rough time lately with my mother in law just had a stroke, had a call from a gentleman a lovely lady I have known since I was in my first job ever she is 93 had a stroke and in a care home and been told she will not be going home. Her daughter has breast cancer and been told nothing more can do. 

So I have felt down quite a bit with all what's been going on and not enough days in week to do everything especially with working too.

i wish all of you a merry Xmas and hoping all to have a good new year.

Scooby ❤️

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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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Sarah 2345's picture
Replies 2
Last reply 12/14/2017 - 5:11pm
Replies by: Janner, ABlazek

Hi 

I found out on Tuesday that I have a melanoma insitu and it was cut out that afternoon. The doctor told me I was very lucky it was caught so early and it has 100% success rate. While this is the best case scenario I can’t stop crying and feeling so scared. 

I’m from the UK, red haur, fair, freckles and now live in oz (3 years). The past few years I’ve been very careful in the sun but growing up for years I sunbathed, use sun beds, have burnt and blistered so many times I’ve lost count  

I turned 40 last week -actually had the biopsies on my birthday! I have 3 very young children (1,3 and 5) and I’m so scared of something happening to me and me leaving them in this world. 

Whilst its great the melanoma was still insitu im so scared given my colouring and huge sun exposure that sone thing more serious is round the corner. You hear lots of stories of things more serious coming back and it’s just scaring me so much  I don’t want my kids growing up without a mum - I can’t cope with the thought and I’m a mess. 

I’m crying constantly and just can’t stop thinking about my kids. I need to go for 3/12 check ups but I’m worried that’s not enough. 

My my other question is that this melanoma was found by luck at a skin clinic - not a dermatologist. And the same guy cut it out. He’s a specialist GP. The report said clear margins but how do I know if clear enough. Should I ask to get more cut off? I’m trying to get in to a dermatologist but that won’t be for 2 months as so booked up here. 

Thank you for listening and any positive words so welcomed  

 

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/14/2017 - 3:29pm

Hey Warriors!!

Today was my 4th round of Pembro/PV-10 and I can report that the PV-10 appears to be doing its job well. It was concluded today that PV-10 has killed the tumor it was injected into and the tumor is now "mush" (which I think is medical jargon for necrotic). This is pretty exciting not only for me but potentially for others who might receive this intralesional later.

Injections were still given today (by the trial protocol, as long as there is something there, the injections will continue for the full 5 rounds. Only one more to go! The amount, which is determined by the size of the tumor, was much less today than in the previous 3 rounds. It still stings like a mother, but let it sting...its killing melanoma! 

I will not know about the other two lesions until scans next month but I will say that PV-10 has made a believer out of me. Now I pray that Pembro is working as hard. Its time to brace for the Pembro flu as I have come to call it.

Charley Mike Warriors, Charley Mike!!!

Tex

Tex

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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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Jewel's picture
Replies 2
Last reply 12/14/2017 - 9:46am
Replies by: Bubbles, Toby0987

Good morning,

Hard to believe I've been off this site for awhile to help my husband now deal with his bladder cancer diagnoses. He will be having his 6th treatment of bcg tomorrow. The good news is my husband finished his Yervoy treatment in Feb 2015 and so far has kept him NED. Upcoming scans in Jan. I guess my question is have any of you felt with a 2nd cancer as well? This one has been very rough on us both mentally & physically. Hoping you all are doing well and thank you for this wonderful place to vent and be true to fears and questions.

Jewel

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jagstter's picture
Replies 3
Last reply 12/14/2017 - 9:17am
Replies by: TexMelanomex, jagstter

Happy Holidays & Merry Christmas, Everyone!

 

Back @ my favorite place (not!) for labs, scans & answers ... hopefully ;-)

 

Very eager to get lungs confirmed clear from August scan. I had a PET/CT in Pensacola, early November & it looked good. That would definitely be a good Christmas present for me!

 

Separately, I'll be trying to get somewhat of a second opinion regarding the right kidney tumor dx'd by the Urological Oncologist @ home. It has been increasing in size, all year. However, Doc wants to 1st do a TURP for my 180g prostate, allow recovery, then take a partial or full kidney in the spring. I don't think MDA would want to do a biopsy (from everything I've read) but I could find myself surprised. Only bummer w/ that is I'm flying solo, this time. My sweet wife needed to stay home w/ the 4 kiddos & a crazy "taxi" schedule. She explicitly told me I was not allowed to have any surgical fun on my own ;-)

 

Anybody here in Houston, this week? It would be great to meet fellow Warriors & encourage one another ...

 

Take care!

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Tracyyy's picture
Replies 7
Last reply 12/14/2017 - 7:37am

Dear all,

Nice to meet you all here even though it is difficult for me to post....

My mother was diagnozed in 2013 melanoma stage 3. Until now everything was fine, she did all her regular scans. Lately she found out she had a swollen lymph node in the groin which is near the operated mole. She is having the node removed tomorrow, but all the waiting and not knowing is devastating to me and for our family... I cannot stop searching the Internet, i know this is not a good thing as every problem is individual but i am so worried. However, I found out that there are many people with 1 lymph node positive which have been NED after that. I would appreciate sharing some expercience because she means everything to me!!!

Sorry for my bad English, I am from Bulgaria. Wish you all good health!

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MelanomaMike's picture
Replies 7
Last reply 12/14/2017 - 12:39am

Hello Family, just checkin' with ya's, i start my 2nd round of Pembro tomorrow morning, cant wait! the farther along i {we} get with the treatment, the better it works! allthough, i want to say it has already shrunk my tumors {wishfull thinking!} of course we wont know untill my next scan. I expressed during  my 1st dose, when i was in the recliner hooked up to my bag of Pembro, i felt a warm burn in my lungs  {thats where my tumors are,}  i imagined that was Keytruda battling its enemy for the 1st time during my war against Melanoma! lol..a lil' update on my side effects, low energy, more so on week 2, apitite is weird, some days no, some days cant get my fill! joint pain in shoulders, arms, yet kinda had this "before" Pembro realy...and of course the biggest "side effect" to date, my tattoos are Bubbling Up! some more then others but, hay! tattoos arnt suppose to be there right? Pembro is doing its job! i can feel the texture of my skin like its "Braille" for the blind! really weird! lol...overall i feel ok, lets bring on round 2 & get that in the history books, im dying to take my next Scan!..take care ya all, sorry i havnt posted in a while, time is flying it seems....love ya guys...Mike

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Jimchief's picture
Replies 8
Last reply 12/13/2017 - 10:38pm
Replies by: Anonymous, Joycem, Ed Williams, Bubbles, SABKLYN

Hoping Celeste or some others who have been down the path can give me guidance.

First melanoma. 8 mm primary with ulceration in L thigh. WLE done October 3rd. Due to infections/complications, haven't started any adjuvant treatment. 

SLNB shows only two individual cells. So it's like a submicrometastasis. So I'm either Stage 3A or 2C depending on whether or not you believe you can be "a little bit pregnant" with a tiny metastasis in sentinel node. (Luckily no other mets on Brain MRI and first PET scan.)

Currently at MD Anderson for 2nd opinion. Doc at home (melanoma specialist at CI-certified hospital) had originally talked about various immunotherapy options but ended up recommending "watch and wait."

Medical oncologist yesterday at MDA threw me for a loop saying she would recommend pegylated interferon. Self-injected for a year.

I was just sure that everyone thought any interferon was off the table. She said that the key for me was ulceration. She said that peginterferon is the only treatment with data showing an effect on those who had a thick primary tumor that was ulcerated.

I'm curious if anyone else has had this recommended in the last couple of years.

Thanks for any help/advice. Researching hard but everything seems to be based back in the "olden days" (i.e., more than five years ago) when all the new options were not available yet.

For those who have been down the path, what are the side effects and for what percentage of folks?

You guys rock!

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MovingOn's picture
Replies 2
Last reply 12/13/2017 - 4:20pm
Replies by: Bubbles, miaka618

Does anyone with hypophysitis from Ipi (or other immunotherapy) know of a forum where those issues are discussed (adrenals, pituitary, etc)?

I ended up in the emergency room today. I have the flu but what really made me scared was the adrenal crisis which hit me around 3pm. I normally take 15-20mg of hydrocortisone each day. Because I was sick I updosed to 30mg. Well I now know that I should have taken a total of 100mg today (the ER pumped me with 200mg of hydrocortisone and now things are fine - I still have the flu but the involuntary muscle contractions, rapid heart rate, and puking are over.

I’ve also noticed my TSH (produced by the pituitary) has gone up 8 fold from where it was at hypophysitis diagnosis in May. It is now 1/2 of the low end of the normal range (but my Oncologist sternly says it will not recover. I hope she is being purposefully negative to not get my hopes up). So I’d like to discuss these things with others who have experienced hypophysitis. It is part of my new normal and I’m not sure I know too much about it yet.

I also had an ACTH stim test and my adrenals barely worked. They haven’t been used since April so they are atrophying. I wonder if others who have experienced hypophysitis are doing anything to keep their adrenals healthy (or maybe no one does because the pituitary is non-functional for life).

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/13/2017 - 4:06pm
Replies by: Bubbles

Good Morning,

I have read that with chemo you should refrain from unprotected sex for 48-72 hours after treatment.  However while on immunotherapy is there the same level of concern for unprotected sex?  If there is a chance that the drugs can be passed then it is not worth it at all but if there is not a risk I would like to know.

Also I completely understand that you do not want to get pregnant while on immunotherapy.  Other precautions can be taken to insure that does not happen.

Thank you!

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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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Nick C's picture
Replies 1
Last reply 12/12/2017 - 11:42pm
Replies by: TexMelanomex

Hey all..Because I still show progression in some nodes (after most sites being "resolved"), I was taken off Keytruda. We looked for a trial that I would eligible for and found this one. It's a combo of Keytruda and MGA271. I start on Monday. Combo every three weeks, mono every week. Just wondering if anyone else is in this trial? Celeste blogged about this trial back in July of '16. This should be interesting...first day calls for a 14 hour day. Most others will be about 7-8 hours. At least there is shopping near by for my wife.

Keep up the good fight my friends.

Nick


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Langolier's picture
Replies 9
Last reply 12/12/2017 - 10:29pm

I was just diagnosed with Melanoma and I’m completly lost as to how bad it is and how worried I should be, the dermatologist seems to think that it should be ok but he nevertheless has referred me to Cedars Cancer Clinic in Montreal so that more can be removed. This is the biopsy result:

-malignant melanoma, superficial spreading type

-cell type:epitheloid

-depth of invasion (breslows) 0.8mm

-clarks level II

-growth phase: radial phase

-ulceration:not identified

-dermal mitotic index:insufficient invasive component for evaluation

- regression:not identified

- angiolymphatic invasion:not identified

-perineural invasion:not identified

-pertumoral lymphocytic reaction:non brisk

-microsatellitosis:not identified

-pathologic stage (ajcc, 2010): pT1a

-resection margins: free(1mm from the closest peripheral margin)

 

Any help in deciphering and helping me understand what is going on I would appreciate it. The dermotologist mentioned the referred surgeon will remove more area and possibly a lymp node biopsy. Thanks.

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