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.

Expand/ Collapse Topic
 
Replies By
View Topic
casagrayson's picture
Replies 3
Last reply 7/3/2018 - 11:05pm
Replies by: Mark_DC, casagrayson, Becky

I was thinking about Jake today and wondering how he is doing.  Has anyone heard from Kerri (MomofJake)?

Strength and Courage,

Susan

Login or register to post replies.

Riven's picture
Replies 16
Last reply 7/3/2018 - 4:37pm

Over the past 6 weeks life has felt like a roller coster. My range of emotions has been off the charts, but I have always kept a brave face on for friends and family. (Even after my cat Harry passed away last Friday night) I just feel like if I don't keep a constant smile, that people are going to start to become upset with me. I have always been a very animated person, who does their best to keep the mood light and happy. But when things bother me or freak me out, I usually am very vocal about those things as well, which hs given me the lable of being overly dramatic. This is something that most of my friends and family have said a least a couple of times in my life. "Stop being so dramatic."  "Come on, it's can't be that bad."  "Are you really going to let that bother you?"  "That is what you are worried about? Please..." I could go on for hours...I can't tell you how many people have used the line, "At least it's just skin cancer."

 That being said, I fell like most people don't understand the saviarity of my diagnosis. I have spent countless hours doing research, along with my mother, and have poured over this wonderful forum to help give me better understanding of what to expect. I have given my friends and family facts on how detrimental this disease can actually be. Even after all that, when I gave the announcment that I am currently NED, everyone had a sigh of relif, and a few people said that they knew it wasn't 'that bad'. But when I tell them that the fight isn't yet over, and really never will be over, they brush me off.

At this point it's hard to grapple with the intese feeling of being so alone. I keep questioning myself now, wondering if it really isn't that bad and if I am just being dramatic. I guess I don't really have any questions, I just wanted to get all of that off my chest. If I am posting to often, please let me know, but it just helps to just put it all out there, you know?

Thanks for listening,

Becca

Login or register to post replies.

SRVilly's picture
Replies 6
Last reply 7/3/2018 - 9:18am

Hello all,

I just had my 2nd PET scan since Dx Stage IV in Dec. of 2017, and completed my 12th infusion of Opdivo only (no combo due to a history of ulcerative colitis). My liver mets, which were present in Dec, but were not seen in my first scan in March, are still gone and nothing new has popped up! My external iliac node is now around 1 cm with a SUV of 1.3, down from 3cm and SUV of 15 in Dec. I also have an area in my right side groin where the CLND was performed last July where the SUV has decreased, and the report also says there is minimal hypermetabolic activity in the area.  My onc is thrilled with these results and we are hoping the two active areas will be gone by my Sept. scan. Overall, great news for 6 months of infusions!

I have also been lucky with very minimal side effects.  I've had some slight nausea, some minor fatigue, and my thyroid is "jacked up", but I haven't missed a day of work and overall have been feeling great.

This is my first summer in 3 years where I haven;t had to have some sort of surgery.  I am going to get out there and enjoy it as much as I can (with proper clothing and sunscreen of course!). I hope you all can do the same and will enjoy the 4th of July holiday. 

Thank you all for your stories and words of encouragment. They really help! Take care and be well.

Steve

 

 

Login or register to post replies.

Becka151's picture
Replies 5
Last reply 7/3/2018 - 9:10am
Replies by: Raco, Becka151, KellyH, Tracyyy

Hello:) 

I’m posting for the first time here. My journey with Melanoma began a few months ago. I’m currently stage IIIA, I’ve had the wide excision, skin graft closore, and sentinel node biopsied. The lymph node biopsy came back positive with a small area of metastic melanoma. I’ve had a PET scan which came back negative for any metastatic disease. My genetic testing came back BRAF positive. Tomorrow I start Adjuvant  Immunotherapy with the drugs Dabrafenib and Trametinib. It will be oral medications taken daily for 1 year. I’ve had all the counseling of the side effects, which quite frankly is a bit worrisome. I’m asking if anyone here has been on these medications, and if so please share your experience with me. It would be greatly appreciated. 

Thank you so very much. 

Becka 

Becka151

Login or register to post replies.

MarieM's picture
Replies 2
Last reply 7/2/2018 - 8:02pm
Replies by: Tina.R, Janner

I haven't been here in a long time. I don't even know how to navigate this site. For the old timers who remember our special Nancy...the news today has broken a piece of my heart. Although not melanoma...another life taken way too soom. If there are any oldtimers still here...I will always remember her courange, her spirit, her abiliity to connect and affect so many. RIP dear Nancy. With a broken heart...Hugs...MarieM

Login or register to post replies.

KellyH's picture
Replies 7
Last reply 7/2/2018 - 4:10pm
Replies by: Hukill, Anonymous, guynamedbilly, doragsda, Mark_DC, Bubbles, bjeans

I am just wondering what everyone has found to be the best sunscreen??? I have bought several different brands all claiming to be “the best” and I’m not thrilled with any of them. 

I need to find one that works the best in athletic situations for my son...he is a huge baseball player and he has been really good about applying and reapplying this season  but we always were so diligent even before he was diagnosed because he is a red head, blue eyes, etc...

im just curious what everyone uses I guess...my dermatologist gave me guidelines on what to look for in s sunscreen but I’m thinking there has to be a favorite among patients out there!!!  Trial and error is not really an option. 

Thanks!!!!  

 

Kelly :) 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 7/2/2018 - 9:08am
Replies by: marta010, opal2163

Hello everyone- I am new here and my dad was reciently diagnosed with melanoma in his left leg. It had spread to the lymphnodes and through the blood vessels but the Oncologist still believed it was treatable however agressive. He was admitted to the VA Hospital about 6 weeks ago due to abnormal swelling and brusing to his RIGHT leg which only had a small spot of melanoma in it. (No melanoma detected in the brain or other major organs on PET scan) 

He started on 3 days of immunotherapy (vemurafenib) before suffering a total breakdown. Confussion, severe tremors, in and out of consciousness. after MUCH testing including two LPs and MRIs the Primary care team has said he has cerebreal edema. Infectious disease can find no infection anywhere and Oncology has said there were no cancer cells in the brain or spinal fluid. 

We thought we were going to lose hin for sure this last week however he's still fighting and so are we. All the medical teams have flat out admitted they don't know what is causing the swelling in his brain. I thought maybe reaching out here would help to lead us to some answers. 

My heart and prayers go out to every member of this forum. To those of you fighting this disease, those of us who love you fight it with you. and when you can't fight, we fight for you. 

Login or register to post replies.

Casitas1's picture
Replies 8
Last reply 7/1/2018 - 1:34am

Hello everyone, I am celebrating my two year NEDversary today! It's been almost 10 years since diagnosis and been stage 4 four years. Been one hell of a ride... Picked and prodded, sliced and diced, medicated and radiated. Thanks to all for the support and great advice. Hoping to see more stable and NED posts often. Best, Paul

Login or register to post replies.

nicolec's picture
Replies 3
Last reply 7/1/2018 - 12:19am

I would like to introduce myself. While I am 'new' here, I'm not. I have found the information on this board invaluable and extremely helpful since my first biopsy, which was in April. So, THANK YOU! Reading information on-line is overwhelming, but reading the information on the board made me feel like I had power and knowledge as I waited for biopsy results, many times.

I am stage 3a. After my WLE and SLB, I had two lymph nodes show microscopic foci of small nests and single mart-1 postive cells. One each on each side of my groin. Pet scan is clear.

I am seeing a local oncologist, who is not a melanoma specialsist. From everything I've read- I'm thinking I should see a melanoma specialist. I have a referral in to the Mayo Clinic (relative near me and where they sent two of my biopsies for 2nd opinions so I figure they're the ones to go to).

My onocologist is going to start me on Opdivo. 

The nurse at my oncologist's office just called and said Mayo doesn't have any clincial trials- but I could still go if I'd like.

 

My question- at my stage is a 2nd opinion very important? 

Also, and more importantly- I'm wondering about a CLND. It would be both sides of my groin. From what I've read- it's not really recommended anymore? My oncologist, at my first visit, said it could be a possibility. Then he said that perhaps just radiation in that area would work. But I don't really know what his plan is.

Thanks!

Nicole C
3a

Login or register to post replies.

Paysingermelissa's picture
Replies 5
Last reply 6/30/2018 - 9:02pm
Replies by: Bubbles, Paysingermelissa, Anonymous

Hi my name is Melissa. My husband Patrick who is 38 y/o just got diagnosed with melanoma. He had a mole on his chest turn dark and went to dermatologist who removed it. We received a call on Wednesday of dx and was made an appointment for today with a surgical oncologist. He was set up for a wide excision and lymph node dissection for 7/10. His path report showed Maligant melanoma w/superficial spreading, Clark level IV, Breslow 1.1 mm at least, growth phase vertical, epithelioid cells, mitosis 2/mm2, primary tumor classification pT2a. Tumor is present on base of biopsy and the actual depth of invasion may be greater than measured Depth. We asked about a PET scan and she stated they would do that scan if any of the lymph nodes tested positive for CA why not now while waiting for surgery?   I guess my concern is she tell us it aggressive but is 12 days soon enough especially if there is still tumor present . I am here to absorb and educate my self with any information shared. We are very scared and would appreciate any advice. 

Login or register to post replies.

Coach2u's picture
Replies 3
Last reply 6/30/2018 - 3:03pm

Side effects from lpi/nivo kicked in, took 6 weeks but here they are. The same ones several of you guys have experienced.  I have been given steroids and Imodium to help but it’s still awful. I have  two more infusions, do the  symptoms stabilize or settle down ? How did you tolerate this, could use some advice. MIke K.

stage 4 spine and liver tumors. 

Login or register to post replies.

TexMelanomex's picture
Replies 11
Last reply 6/30/2018 - 8:44am

Hey Warriors, 

I completed lucky #13 of Pembro treatments and true to form some thyroid issues emerged on the labs..nothing that requires correction yet, hopefully just a blip following a long B-day weekend in Vegas, but its my first anomally on labs since starting all of this. 

I hope this finds you all fighting hard, living harder, and warrioring on!

Tex

Tex

Login or register to post replies.

Abbygx2589's picture
Replies 7
Last reply 6/28/2018 - 9:38pm

Hello all,

My dad (stage v with brain mets) has met the two year mark of ipi/nivo combo with nivo every 2 weeks. He is now off treatment as his oncologist  feels he no longer will benefit. I hope he is correct! Spots in his brain and lung are still visible but they feel that there may be no more active cancer. I cannot believe how far he has come!! 

Has anyone else discontinued treatment without fully being known as NED (no PET/biopsies)?

 

Thanks!

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 6/28/2018 - 9:26pm

You will find this very encouraging and it is translated to many languages:

http://melanomainternational.org/events-webinar/patient-experience-video...

Login or register to post replies.

Scooby123's picture
Replies 4
Last reply 6/28/2018 - 5:37pm
Replies by: Scooby123, Bubbles

Hi all hope you doing as well has can be. Been for results of scans, plus camera tests . Scans same no change normal I was told. Camera test normal biopsy test taken normal.

so had my bloods today HB bloods still low 75 started iron tablets 3 weeks ago so was not expecting big change but did talk about another blood transfusion. So going in on Saturday for 3 bags blood which should bring me up to 100. 

Question after all the test looks like treatment could be causing bloods to drop and anemia so waiting iron count back then looking at b12 infections with iron meds.

anyone had iron tablets and how long before improved anemia.

thanks guys

scooby❤️

Login or register to post replies.

Pages