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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Bubbles's picture
Replies 2
Last reply 12/22/2016 - 5:05pm
Replies by: MaPerny, jennunicorn

...so sayeth many melanoma reserachers.  Here is a copy of an interview Weber gave this month that breaks it down.  (Great thanks to Eric and B for their melanoma snooping today.  Lots of slides from a PrimeOnc presentation that presents data on many of the combo's Weber addresses...when I get the chance!!!)

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/the-future-for-melanoma-treatment.html

Blessings to you all this holiday season.  We have all borne the scars of melanoma.  However, we will move forward...TOGETHER!!!  love, c

PS...if you're sick of melanoma and just want to eat cake!!!  ~  the post below this one is perfect!!!  :>)

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Marina_fonseca's picture
Replies 1
Last reply 12/22/2016 - 2:30pm
Replies by: Tim--MRF

Hey everyone! I am new to the forum and have just gotten the results of a biopsy I had 2 weeks ago. 

It says my mole is 1.2cm X 0.9cm X 0.7cm and has an irregular epidermal surface.

It also says in the microscopic analysis that:

- histological cuts show fragments of skin with proliferation of fusiform or dendritic cells, intensely pigmented. Distributed in dense collagen.

- and that the borders are clean.

 

the final diagnosis presented (in the biopsy) is a blue neavus.

I sent my dermatologist the results and she said that they're normal and I shouldn't worry. I'm scared because the results seem so scientific and weird and I don't know how to interpret them.

Has anyone else had any results similar to this?

Also, the pathology report was really short. It had 3 lines written and it didn't have any of the markers tested and any other information. I thought that was a bit odd.

Anyways, 

Should I get a second opinion on the results? I have a family history of skin cancer (mostly melanoma) and I know it's not something to play with.

thanks for your time :). 

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adriana cooper's picture
Replies 13
Last reply 12/26/2016 - 12:10pm

I am sad to read of the extreme challenges many are having recently. Luckily Adriana has been doing relatively well recently and restarted pembro two weeks ago. We greatly appreciate the continuing support from all on this site.

Remembering to live life, our wedding is on Friday at 2 PM PST and invite you all to our live stream.

We hope you can visit our wedding live stream on Friday Dec. 23, 2016 at 2PM at ActionPhotosNW.com

Happy Holidays, Rob and Adriana

Adriana

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rabbits68's picture
Replies 3
Last reply 12/23/2016 - 12:08pm

In September I had to stop MEK due to progression. After severe hip and leg pain, a scan showed a fracture in the top of my femur and I now have a titanium rod to stabilize that leg. I started Keytruda and have had 5 doses. My back and legs hurt so bad most of the time and I'm getting anxious and concerned. Should I be I insisting on a scan or is it too early? I do have spine and pelvic mets that had stabilized on MEK. It was amazing how fast things progressed for me after MEK stopped working. Trying to stay positive and keep my eyes on Jesus.

LisaG

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dochas's picture
Replies 10
Last reply 12/24/2016 - 7:43pm
Replies by: dochas, Gene_S, debwray, Hukill

Hi everyone

i have been lurking for a little while, reading your stories.

i am writing on behalf of my dad, who first started feeling ill in November, was then diagnosed with metastatic melanoma on 7 December and started treatment with his first infusion of ipilimumab last Friday, 16th.

we are all very worried but at the same time relieved that some treatment has started.

however he is so exhausted, a fatigue far beyond anything he has ever known, and I wondered if anyone could share from their experiences whether this possibly might improve over the next few weeks before his second infusion. He is trying to stay so positive but this fatigue is really getting to him. So looking for some hope.

thank you x 

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Bradley75's picture
Replies 10
Last reply 12/22/2016 - 2:35pm

I haven't posted much recently because thisis all moving so fast.  In August, I moved to stage 4 with a small tumor in the fat near my right kidney.  Surgury went better than expected and the tumor was removed.  In late October, I had back pain that I attributed to a pulled muscle.  I went to my primary clinic and they agreed an put me on pills to treat the symptoms.  Well, the pain didn't go away.  It was progressively getting worse and it was time for my next round of PET/CT.

Thursday the 14th, I had my scan at 9am.  By 2pm, we were discussing the tumor pushing on my spine around T-5.  It is about a 3 cm tumor growing in and around my 5th rib on my right side.  The scan also showed another small spot on t-1, minimum of 6 lung mets, and two soft tissue spots near my thyroid.  That whole thing sent into motion a whirlwhind of activivty.  Spine MRI, radiation evaluation, and radiation simulation all done Friday the 15th.  They hit me with my only scheduled radiation treatment on Monday to knock the tumor back off my spine.  I went from what I thought was NED to a whole different world. 

I met with my onc yesterday to discuss immune therapy.  I have read so much about all the various things posted here, but it takes on a whole different meaning when faced with it.  The recommendation I received yesterday was IPI and NIVO combo.  I think he called it Yervoy and Opdivo combined treatment.  It seems like my best option based on all the research he showed me, but I am scared.  This is kind of a big decision and I need to make sure I am comfortable with what I decide.

I wish I could post positivity on here today based on what Josh and others have posted.  The best news I can give is that I pray for everyone on this board and those dealing with this disease every day.  I appreciate any insight or thoughts anyone would be willing to share.

Brad 

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Aloha14's picture
Replies 2
Last reply 12/22/2016 - 3:14pm
Replies by: cavsnut, Michelle820

My surgeon seems anxious to have me do the ultrasound of my lower leg right away and I don't mind. I guess she just wants to see what it looks like right after surgery to remove the tumor. The lab indicated that all of the melanoma was removed. Anybody else getting ultrasounds after surgery and periodically for a year after? I'm also getting the Pet Scan next week. 

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jenny22's picture
Replies 21
Last reply 12/27/2016 - 9:31am

Good morning everyone-

Its been a tough few days on the board.....after reading recent posts from Josh, Paul, and others....(and wondering about Jamieth29)  I thought it might be a good time to for another LONG TERM Stage III and IV survivor roll call.

Any long term STAGE III survivor stories....anyone after multiple recurrnces?

And any long term Stage IV survivor stories?

Melanoma is one tough battle, and this time of year is often tougher.

Hoping some of the longer term folks will chime in...those good stories are so encouraging and  a great reminder for everyone.

Wishing everoyne happy holidays, and lots of hope for a healthy 2017!!!!!

LONG TERM III AND IV SURVIVORS PLEASE POST!!!!!!

 

 

 

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Mikers's picture
Replies 2
Last reply 12/27/2016 - 4:29am
Replies by: Mikers, debwray

Hello.

Decided to rechallenge PD1 with Nivolumab this time. Meanwhile LMD disease is symptomatic again - frequent vomiting and absolutely not possible to eat (though drinking is normal). 
Had only one Nivo infusion and thinking of trying low dose dexamethasone to control nasea and vomiting. I wonder is it possible to have it without strong suppression of PD1 effect (if it still will be working taking into account that pembro has already failed).
I've seen that in clinical trials they usually demand level of dexamethasone not higher than 2mg.

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Terrified's picture
Replies 24
Last reply 12/27/2016 - 8:34am

Unable to sleep, I sit here in the hospital listening to my beautiful husband breathe. Sometimes labored and coughing, at other times more restful. He is the best man in the world. I know that a love like ours is rare and I am so grateful for that gift. But it also makes the pain of seeing him like this that much worse. 

He was admitted for nausea/vomiting and confusion. He has progressive melanoma in his lungs and abdomen and bleeding and swelling in his brain. He has not responded as well as hoped to high dose steroids for the swelling and Thursday will undergo a craniotomy. Then after recovery from that he will start IV immunotherapy. The worry is that starting immunotherapy now may increase cerebral edema and need for more delay of treatment or even herniation. 
The oncologist believes this is our best plan, but admits that his rapid advancement of disease is not reassuring. He failed MEK/taf after just two weeks.
Always the better person, he does not rail against God for this happening. I am not so inclined. Those of you who believe in the power of prayer, please pray for a miracle. 
 
Judy 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/21/2016 - 9:14am
Replies by: Hukill

I have been receiving nivo every 2 weeks since 11-4-15. I also had yervoy in conjunction with nivo the first 4 doses. I have been stage 4 since 2-2015. I started with taflinar and Mek until I progressed.

My whole body pet scan on 10-15-16 was totally clear. Last week my ldh went up to 399. It had been jumping around between 189-199 and even up to 214 3 weeks ago. My oncologist thinks everything is okay but since I am getting close to time for another scan and my concern. I had my whole body pet yesterday and go to the doctor tomorrow for my results. I know I am very blessed to be doing well but wanted to see if other people had had ldh go up and still have clear scan.

Thanks

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S-anxious's picture
Replies 2
Last reply 12/21/2016 - 6:26am
Replies by: Michelle820, Janner

I was diagnosed with stage II melanoma, from a biopsy of a 4mm atypical mole, on my lower back, in April of 2016.  I had an initial excision (wide area excision) on that melanoma, along with 6 other biopsies of atypical moles.  The lab tested the excised tissue and determined there was still a margin of affected cells or whatever it's called, so I had a second wide area excision to the lower back, which now included a smaller mole next to the first one that was diagnosed with melanoma.  The results of this excision showed clear.  There was probably 14-15 stitches at this point, but after healing, the scar is down to 4 1/2" by 1 1/12" (very ugly football shaped).  Since then, I have been back to this Dermatologist 8-9 times, to remove atypical moles with moderate to severe something or other (cellular problems?).  I can't remember the exact term, but the atypical moles with slight problems I've elected to just watch.

 I have had 7 more wide area excisions, on the atypical moles with moderate to severe results, with scars each one resulting in scars 2-3 inches long (I still have stiches in my mid-back).  I also had a cyst removed from my left side abdomen, during these visits.  I have had wide area excisions on side, left front, and mid abdomen, as well as my left calf and mid-back.  I am very anxious during these procedures (I actually started shaking uncontrollably during the second wide area excision if the melanoma.  

I have a high pain tolerance, but for some unknown reason, I am terrified of needles, not to mention the scalpel and the soldering instrument they use to cauterize the bleeding, prior to the inner and outer stiches.  I used up to 20mg of valium, prior to treatment, but it does not help to calm me down.  

I am very light skinned and have an uncountable amount of moles, which my doctor referred to as, "a bazillion", which look atypical and need biopsies.  I feel like I am slowly dying by a thousand cuts!  I generally don't take any time off of work for these single excisions and multiple biopsies, but they are very uncomfortable due to the equipment I have to wear at work.  I've questioned my doctor and requested some type of general anesthesia, to complete 10-20 of these excisions at once (at which time I would take some time off of work to heal).  

The excisions have generally healed in 2 weeks, except for the excision of the original melanoma, which took much longer to heal.  I generally just remove the stiches myself and sometimes have to dig them out, due to skin overgrowing the stiches, which causes bleeding and small wounds.  

My doctor told me they generally only do one wide area excision at a time, along with up to five biopsies, due to their policies and what the insurance pays.  I was told that the insurance only pays 50% for a second excision and less for more.  I've cancelled several appointments, at the last moment, due to my anxiety about the procedure.  

I've offered to pay out of pocket for general anesthesia or even a sedative type anesthesia, but my doctor told me that is not an option and no other dermatologist or surgeon would do it that way.  I'm worried about dying of cancer, but I also don't think that wide area excisions over months and years, one at a time, can be an option for me, especially due to the extremely large number of atypical moles, which have come back with negative results (moderate to severe).  My doctor is a very nice guy, but I can't handle the unending surgical procedures, while I'm wide awake!

Today, he offered to possibly do two excisions, along with plug type removal (7mm), of the atypical moles, instead of just doing a slicing biopsy.  But this still leaves me in a bad situation, due to the level of anxiety and number of atypical moles on my body.

I have good medical insurance and I am sure they would pre-authorize some type of mass wide area excisions, with anesthesia.  If not, I would be willing to pay the difference, out of pocket.  

Is this just not an option????  It feels like it's more of a doctor/corporate form of greed, rather than a insurance issue.  I've checked the internet, using multiple search topics, but I can't find any information about sedation or general anesthesia for these procedures.  

Please help!!!

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emilykmorgan's picture
Replies 2
Last reply 12/21/2016 - 10:07am
Replies by: emilykmorgan, Janner

LENTIGINOUS COMPOUND NEVUS WITH ATYPICAL MELANOCYTIC HYPERPLASIA, EXTENDING TO MARGINS ...

This is the diagnoses for my blonde hair blue eyed pail skin 6 year old daughter. She had a tiny mole rapidly start changing. It grew, and swelled, it burned and itched and started bleeding. All within weeks. From zero to 100. Peditrician and Derm both said it was nothing but would do a shave biopsy to remove it because it was bothering her. We didnt hear anything for  6 weeks. Then we went into office and they asked if we could schedule a wide local excision because they found atypical rapidly dividing cells with no margins. Can anyone lend me some knowledge. From what I understand pediactric stuff is different then adult... She was transferd to a pediactric specialist at the local childrens hospital. We go tomorrow. 

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skousal's picture
Replies 9
Last reply 12/22/2016 - 10:23am

In June 2016 I noticed a large black mole on the back side of my left thigh and my initial instinct was to have it removed. I called the only dermatology clinic accepted by my insurance and they informed me that they were booked and that I would have to call back in Sept when the new schedule opened. I waited and in Sept I was scheduled for January, which was took long, so I searched for another clinic that would see me and allow me to pay out of pocket. Finally, I was scheduled for October 20th. The dermatology was not worried about the mole but removed it anyway and said the results would be in in a week. Two weeks went by when I got a phone called stating that the sample would need to be sent to another lab. I was scared at first, but he told me that they often have to sent samples away. Two more weeks went by and on November 18th I got the call that it was spitzoid melanoma, over 1mm thick and that I would need surgery and a lymph node biopsy. I was shocked and terrified. I visited the local cancer center in Albuquerque where I live, the very next day to schedule my own appointment as I was so tired of the long waits I had suffered. I had surgery last week, December 13, 2016 and I got the results today. I am sad to say that the melanoma spread to one of the two lymph nodes removed. I am very worried as I have been having fevers and rib pain, and I fear it may have spread else where. I could use any bits of advise and support now. Thank you.

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skousal's picture
Replies 2
Last reply 12/21/2016 - 10:49pm
Replies by: skousal, Aloha14

In June 2016 I noticed a large black mole on the back side of my left thigh and my initial instinct was to have it removed. I called the only dermatology clinic accepted by my insurance and they informed me that they were booked and that I would have to call back in Sept when the new schedule opened. I waited and in Sept I was scheduled for January, which was took long, so I searched for another clinic that would see me and allow me to pay out of pocket. Finally, I was scheduled for October 20th. The dermatology was not worried about the mole but removed it anyway and said the results would be in in a week. Two weeks went by when I got a phone called stating that the sample would need to be sent to another lab. I was scared at first, but he told me that they often have to sent samples away. Two more weeks went by and on November 18th I got the call that it was spitzoid melanoma, over 1mm thick and that I would need surgery and a lymph node biopsy. I was shocked and terrified. I visited the local cancer center in Albuquerque where I live, the very next day to schedule my own appointment as I was so tired of the long waits I had suffered. I had surgery last week, December 13, 2016 and I got the results today. I am sad to say that the melanoma spread to one of the two lymph nodes removed. I am very worried as I have been having fevers and rib pain, and I fear it may have spread else where. I could use any bits of advise and support now. Thank you.

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