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
rabbits68's picture
Replies 14
Last reply 9/15/2016 - 12:22pm

After 17 months on Mek combo, it has outsmarted the melanoma. Scans showed progression back into the bones. So I am being put on the Ipi/Nivo combo. Anyone care to share experiences with those drugs?
I know God's got this and I keep thinking about a song that says Learning to Lean on Jesus. That is the only true source of strength.
Lisa

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 9/14/2016 - 10:15am
Replies by: Hukill, Treadlightly

i recently had surgery to have a clarks level IV removed and just got the path back have not been to doctor yet since surgery but in my path report it says reperative changes consistant with previous operative site,lentigious,incidental findings, margin free . thats all it says what does this mean??? whats incidental findings

bandit1000

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 9/14/2016 - 8:45am

Has anyone here ever had a baby after being diagnosed with melanoma? Any reoccurrence? One dr told me no more babies and the dermatologist said she had never heard of that and she didn't see a problem with it. My husband and I want a big family and it is breaking my heart thinking of not having more kids. Please any advice or links would be helpful! I've been researching so much but can't find much information!

thanks everyone in advance! 

Login or register to post replies.

Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

Login or register to post replies.

Aida Ballesteros's picture
Replies 8
Last reply 9/13/2016 - 11:17pm

My dad had just being diagnosed with in situ melanoma on august, he got the mole and some good skin removed, but i am worried sick of the chances of the cáncer coming back as in a mole or something else, do you think we should make an appointment with a melanoma specialist for some extra tests? What are your experiences with in situ melanoma?

Login or register to post replies.

Marilynliz's picture
Replies 1
Last reply 9/13/2016 - 8:32pm
Replies by: jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.

 

Login or register to post replies.

Kim Tucker's picture
Replies 10
Last reply 9/13/2016 - 12:43pm

 

After countlss hours of researching and reading your stories, I am adking for input on my 63 y/o father.  Please see history below.  I appreciate any and all comments, thoughts, similar personal stories, etc.  Thank you all~
 
 
Treatment History

August 26, 2016~Upon surgical excision (with anesthesia) of scalp lesion performed by Dr. Arrington-Penninsula Plastic Surgery, Salisbury, Maryland, it was learned that unlike the numerous other removals of basal and squamous cell cancers my father had undergone, this was in fact Melanoma. 

Pathology : Superficial Spreading Melanoma
Thickness Greater that 6mm
Mitotic Rate 4.1/mm
Present Perineural Invasion
Pathologic Stage: pT4a

Margins were not clear and both peripheral and deep margins were involved by invasive melanoma.  

8/30/16 Seen by Dr. Anthony Tufaro-Johns Hopkins Kimmel Cancer Center
Currently waiting on schedule of MRI and CT scans to determine if present in organs. Sentinel Node Biopsy scheduled in approx 4 weeks (earliest possible) with additional removal of disease to aquire clear margins.  This will also include skin graft. 

 

Login or register to post replies.

rabbits68's picture
Replies 3
Last reply 9/13/2016 - 12:01pm
Replies by: rabbits68, JoshF

I am now 17 months into Mek combo and have had very little issues until this month. Started as pain in back and legs that went away and now seems to be a little more persistent. After 4 days in a row, decided to call the oncologist. I am having CT and MRI, am praying this is nerve or muscle related and not bone Mets (which I had before). I know the statistics with Mek and am concerned it has stopped working, but it seems like a sudden onset. This makes me anxious.

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 9/12/2016 - 10:56pm
Replies by: JerryMary34, Ed Williams, Bubbles, Anonymous

Welcome to Global Green Dispensary:

Global Green Dispensary can help you reclaim your health and quality of life. We can provide you with information pertaining to the acquisition, benefits and use of medicinal cannabis and Cannabis Oil oil. Don't let your illness define your life.

Some of the conditions cannabis oil and Medical marijuana has been used for include: Cancer, Diabetes, Crohn's disease, Gout, Pain relief, Glaucoma, Opioid Dependence, treating Alcohol abuse, Epilepsy, Psoriasis, Asthma, Adrenal disease, Inflammatory Bowel disease, Fibromyalgia, Rheumatoid arthritis, Dravet syndrome just to name a few.Our Oil   Cure s Arthritis! Snoring! Diarrhea! Acne! Diabetes! Removes warts! Mighraines! Lose weight! Alcoholism! Glaucoma!
IT CURES CANCER! All forms of cancer!

Based on historical evidence, cannabis is believed to have originated from Central Asia. Cannabis is one of the oldest plant medicines known to man. It is difficult to trace the beginnings of cannabis use by humans because it was cultivated and consumed long before the appearance of writing. According to archeological discoveries, the use of cannabis as a medicinal base has been known in China since the Neolithic period, around 4000 BC
Collectively, our mission is to provide clinical grade medicine both medical marijuana and Cannabis oil to our members in a cost effective manner. We strive to keep our member collectives ahead of the rest If you desire premium medicine for your patients, we are your provider.

And all without any detrimental effects whatsoever!

Add to the extravagant medical claims, the additional accusation that you can’t get this treatment because of a conspiracy by Big Pharmacy and greedy, grasping doctors who want people to suffer so they can charge them lots of money to fix them with agonizing tortures that don’t work.

High Quality cancer cannabis oil and top shelf marijuana for patients with illness like cancer,pain,insomnia,anxiety,liver problem,epilepsy and more. on Sale at negotiable prices. Cancer cannabis oil on sale at excellent rate. Medicinal value.
PACKING: In plastic packs
MINIMUM ORDER: 1 ounce
CONTACT FOR PRICES
Contact:............ +1 (646) 583-4725
CONTACT............. globalgreenoilsupplier@gmail.com
Yahoo messenger...... garrymiller87@yahoo.com
Skype.................kushfreak1
www.worldclasskushsupplier.webs.com

CANNABIS OIL SUPPLIER

Login or register to post replies.

jenny22's picture
Replies 3
Last reply 9/12/2016 - 9:50pm
Replies by: Anonymous, jenny22

Hi to all, and Kerri in particular-

I found myself thinking about you, and Jake today......

Wanted to send good thoughts and HUGE well wishes for his scans tomorrow.  I am sure you must be having BIGTIME "scanxiety".

Keeping my fingers and all other bofy parts crossed for some good news for Jake.

Best,

jenny

 

Login or register to post replies.

Fressia's picture
Replies 8
Last reply 9/12/2016 - 3:50pm
Replies by: Marilynliz, Anonymous, Treadlightly, jennunicorn, Fressia

Hi Everyone,

I can't say I'm happy to be here, but it is what it is at this time. I am 26 years old and newly diagnosed with melanoma as of 8/30/16. I never in my life thought I would receive such phone call, I'm not a typical candidate for who you'd consider likely to have melanoma. I am have olive skin, dark hair, dark eyes, and I don't really go out to the sun often. I won't deny it, I was young and stupid and used tanning beds as a teenager and played outdoor sports without protecting my skin with sunscreen but that's the past and I can't change it. 

The mole I went in for I felt like I've had my whole life but now I'm questioning everything. The reason I went was because I was already having a physical done and the mole looked like it had a ring around it which was different. Nothing like the pics you see on Google, which is why I was completely shocked that it was indeed melanoma. The doctor initially completed a shave biopsy, I obtained a copy of that pathology report and the most concerning findings based on those results was that it measured at least .65mm (Breslow's), mitosis rate of 3/mm2, and the tumor infiltrating lymphocytes were present, non brisk. I've consumed myself gathering as much information as I can from the Internet about these things but everything is so iffy and case by case. I also recently had a punch biopsy done and we are waiting on the results of that. I met with a surgeon who my primary recommended and she's concerned about the mitosis rate and wants to go ahead and do a SNB regardless because the rate is so high. I'm anxious and so scared. So very scared. 

To complicate things a little more, I currently live oversees with my husband who is active duty military. I've seen many recommend to seek melanoma specialist ASAP. I told my husband this is what I want, I want the best of the best but I'm not sure if our military insurance will allow us to use facilities outside of the base. This is something we will have to look into because, I am not going to settle and I can't settle! 

What are questions to ask once the punch biopsy results come in? 

Anyone out there with somewhat similar path findings? 

I'm absolutely terrified, I've had moments when I feel like I can't even breath but I'm also hanging on to hope. I needed to reach out to connect with those who are also going through or have gone through this because this is so scary and knowledge is power. 

Login or register to post replies.

sleepyt23's picture
Replies 12
Last reply 9/12/2016 - 1:05pm
Replies by: Hukill, KAF, Anonymous, sleepyt23, dmturner, slh4448, JoshF, debwray, Patina

Had my first infusion of Yervoy for adjuvant treatment a week ago. Main issues I have had to far are diarrhea, itching, and now flucuating between really cold and really hot at night.

Per my doctor's instructions, Imodium has stopped the diarrhea. Benadryl, lotion, and sensitive skin soaps have lessened itching.

What the heck can I do about the cold chills, burning up, and fever at night? This has happened for the past two nights and it is miserable. 

The itching is starting to drive me insane, too. I wake up in the middle of the night and feel so itchy!

Login or register to post replies.

katieherwig's picture
Replies 2
Last reply 9/12/2016 - 12:50pm
Replies by: katieherwig, BrianP

I have been going to MD Anderson in Houston since July 2014 battling stage 4 metastasized melanoma. This hospital has given me new hope and a new life! I'm one of the honorees at the walk this Saturday in Houston. 

Please read my story and if you feel lead to donate or join my team and walk-please do!

 

https://walk.aimatmelanoma.org/Houston2016/teamkatie

Login or register to post replies.

andrewr85's picture
Replies 9
Last reply 9/12/2016 - 8:54am
Replies by: Anonymous, Ed Williams, DZnDef, WithinMySkin, andrewr85, Bubbles

Hello everyone, I have been reading a lot about diet helping once diagnosed with melanoma. Specifically a vegan/plant based diet (here is a video summary: https://www.youtube.com/watch?v=MHj93P3P7Mw)

 

I am already vegan myself, my Father is the one who has been diagnosed and he is not. He eats a conventional diet, although it would be considered a 'healthier' conventional diet, no fast food and lots of vegetables and fruit. It contains meat and fish with meals 2~ times a day. Milk/butter at breakfast and food containing dairy throughout the day in various forms.

 

As a vegan I already believe in the positive effects and have experienced the positive effects of the diet - although not anywhere near to the extent of helping with any illness etc.

 

What I am hoping to find out is must he choose chemotherapy (for example) or vegan diet, or can he do both side by side? 

 

Nothing I can find tells me that, it's always diet vs conventional treatments. For example, would chemotherapy hinder the results of the vegan diet? I have no worries that a vegan diet would cause him harm, as I have been vegan for sometime and I am healthy and avid gym goer and never had any issues resulting from missing anything due to not eating meat or dairy.

 

I don't want to force him to do anything he doesn't want to and I know knowing my family the choice between the hospital and diet, the hospital would win every time. I also do not know anywhere near enough to put anyone off going to the hospital.

 

I do not know what stage his cancer is at. He has not had a scan yet, he was only told 2-3 days ago that he had melanoma after a biopsy on a lump removed from his arm. His scan is next week.

 

If it is ok to go with conventional treatments and vegan diet side by side I have created a short playlist of videos to show my family to make them aware of the option without overloading them or my Father with information and statistics.

 

Thanks for any help you can be :)

Login or register to post replies.

Pages