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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Anonymous's picture
Anonymous
Replies 5
Last reply 1/4/2017 - 10:51am
Replies by: Janner, debwray, casagrayson, Anonymous

Hi I am really looking for words of reassurance. I was diagnosed with melanoma stage 1 in 2014 0.6mm Breslow depth. WLE was clear. I had appointments with dermatology every 3 months then every 6 months and was discharged from there. I haven't really thought about it until recently when I noticed a traumatised mole which turned out to be nothing. Since then I can not stop thinking and reading up on chances of recurrence. I have read so many stories of early stage melanomas which have returned years later in the lung / brain etc. I am 28 weeks pregnant and feel like I can not look forward to anything for the fear of recurrence. I've also read that pregnancy itself may be cause of recurrence. I feel like I am just in a waiting game until it returns one day & can not function properly. It is all I think about all day every day. I feel like I have a death sentence hanging over me. Please can somebody advise how I get back to living life without this fear or am I right to be thinking this way? 

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Terrified's picture
Replies 35
Last reply 1/3/2017 - 8:46pm

To the valiant warriors I have met here..

 

Your courage and strength is amazing. Your help to your fellow sufferers is so comforting. 

Vince's disease is too aggressive. Failed BRAF inhibitors after three weeks new sub -q met, new bowel mets and progression of lung and brain met. Did craniotomy after intracerebral bleed and swelling did not respond to steroids. Had 700 cc tapped from pleural effusions and shortness of breath was better for a few days. Was walking in the halls with a cane and able to do a few steps.Went home and 48 hours later readmitted for renal failure , LDH 3000 and increasing abdominal distiention, worsenng shortness of breath and inability to ambulate due to shortness of breath and pain. Was hopeful distension was from ascites and could be drained but is just tumor. Got keytruda but no time for it to work. His oncologist as well as the two other melanoma oncologist say this degree of aggression is rare.

Diganosed Stage 4 on November 12,2016. Now moving to hospice. He is still sweet and polite and still coherent. I am broken.

Judy

 

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Buddy0513's picture
Replies 3
Last reply 1/3/2017 - 8:19pm

Hello all,

I haven't been on here lately to post, just been reading when I have time, but I thought I would give an update.

My mom completed all 4 infusions of the ipi/nivo combo, after some delay of the last treatment due to side effects. She has been on prednoisine (spelling..??) for a few months now. She is swollen to the point where she is in pain and can barely put shoes on. Her rash has been to the point where it basically overtook her entire body and she had such itchiness that even the Benadryl wasn't working. They upped her dose of the steroid multiple times (it was over 70mg twice a day at one point). She stopped the carbo/taxol about 2 months ago. After the first infusion of the chemo, about a week later she had lost about 10 lbs. Her stomach (the primary location of the tumor on her ovary which was grapefruit sized), had basically gone back down to normal size and she could now function normally. All of us, including the Dr, cannot believe how fast this happened. After completing the 4th dose, she just had her first dose of the nivo for the maintainence phase of the treatment.

No scans have been done yet. My only assumption as to why is the primary tumor, which I think was the only tumor, we know had shrunk after the chemo/immunotherapy combo. The Dr. did mention scans in the new year and having her on a scan schedule for however long after that. She is only currently approved for the nivo period until mid-March, so I am unsure if that will be extended or not.

I had to return to school since my program is so competitive if I take anymore time off I may not be re-admitted. I am nervous to leave my mom alone, but she has been able to drive and function on her own ever since the dang tumor shrunk anyway! The Dr kept telling me not to worry and mom would be fine. Nurses keep saying they have had a lot of luck with the ipi/nivo treatment, especially with side effects similar to my mom, but I guess it is in my sole duty to continue to worry! 

I have been following the site from time to time, I continue to pray for all of you on this site! My neighbors as well who are good friends of my mom have also been keeping everyone who is diagnosed in their prayers (I would share stories about this site frequently to them), especially since the one neighbors son has been battling lung cancer this past year. 

I also wanted to say thank you to those who have followed my moms story and have been supportive along the way. This website has been a lifesaver for me and her, especially since we had no idea where to go once she was diagnosed. Through this site and learning about melanoma specialists, along with speaking with many who area dealing/dealt with melanoma, saved her life since our current Dr said she would have been gone 12 weeks ago. (The first hospital we had been to basically didn't deal with melanoma and was going to give her the wrong treatment). She ended up making it to her birthday and to the new year. Now we are planning for her to visit me over my break. As I cry and type this I just wanted to say thank you to all once again. Hopefully the new year and her scans will bring us good news and I hope the new year brings good news to all of you who are fighting as well.

Melissa

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snow white's picture
Replies 2
Last reply 1/3/2017 - 6:35pm
Replies by: snow white, debwray

I just wanted to make sure that all knew about Vince.  Judy wrote at the bottom of her previous post, that Vince passed away today at 2:25. My  heart breaks for her. :(

 

Judy-Please know that I am keeping you in my thoughts and am glad to  know that you are surrounded by friends and family to lift you up. You did a fantastic job taking care of your dear Vince.  Take Care.

Jennifer-- Dad has stage IV Mel. No primary found. Treatment has been: Gamma Knife to the 15 brain mets, Craniotomy to remove 3 large tumors in brain.  Currently receiving Opdivo every other week.

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Aloha14's picture
Replies 7
Last reply 1/3/2017 - 4:34pm

Has anyone been to one, and did it help?

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annouk's picture
Replies 7
Last reply 1/3/2017 - 3:42pm
Replies by: annouk, Anonymous, Janner

Hi,

i will try to keep it short...

back in April I noticed a mole at the back of my upper arm - it was small, symmetrical and red/brown coloured  but scabby and itchy. Since then I had 3 doctors looking at it (GP,derm and oncologist) all of them assured me it was fine. However it itched a tiny bit every now and then and I finally went to have it removed privately (we have national health service in the UK)

after 3 weeks of waiting for the biopsy results I got a call from my doctor saying that the path report said it was a Spitz naevus, fully excised.  She said they have sent it for a second opinion and scheduled me for a WLE (5mm). I'm currently waiting to hear back from her as this was just before Christmas.

After researching it online I've found that Spitz naevus and melanoma are very similar and often mistaken for one another. I also have a palpable lymph node on my neck and groin so I'm really worried that the path misdiagnosed me. Has anyone else here had a Spitz naevus? Has anyone been told that they have Spitz naevus but it turned out it was melanoma? Do you think that if the second opinion comes saying it is melanoma (I really hope this doesn't happen :( ) is it likely to be early stage? Is it possible that path says Spitz naevus but then it turns out to be metastatic melanoma? I'm really anxious and can't stop worrying about it ;(  I also find it hard to trust doctors since 3 assured me it was nothing!

any advice would be very appreciated.

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user9999's picture
Replies 14
Last reply 1/3/2017 - 1:55pm

Hello. Loved one recently had a S. node biopsy that showed there is cancer in 3 of the 4 nodes. I think there was not cancer in the one that was farthest away from the original site. 

The doctors didin't give us much more information when they called with the results other than to schedule another appointment in 2 weeks. 

I understand they will do a full body scan either then or soon after. I think that means that we do not yet have a full diagnosis with accurate staging, correct? 

Is there a way to know how serious this is at this point, or not until after the next appointment? 

Can anyone give insight on what all this means and what is likely to happen next? 

 

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_Paul_'s picture
Replies 8
Last reply 1/3/2017 - 12:55pm
Replies by: Spl25, Ed Williams, Anonymous, adriana cooper, Polymath, Bubbles

Hey Everybody,

So my TIL ended after only 3 bags of IL-2, and the day after that I got discharged from the hospital. However, my white blood cells are still depleted from the chemo, as they say, neutropenic. So I was not allowed to go home since it's too far from the hospital, just in case something bad happened.

I managed to get in two days at a special cancer hotel, which was bliss. Last night I had some killer Thai green curry.

But I felt a little warm at one point and my temperature was 100.9. According to protocol, I called my team and next thing I'm back in the hospital because of febrile neutropenia. But this is a walk in the park - just lolligagging around - no chemo, no TIL, just antibiotics.

I'm a little impatient, because they would not let me sleep last night, and I am tired today. I know I need to be scoping out my next plan of action but it's just too much for me today. All these sub-q's on my head are really getting annoying as they grow.

Tomorrow is another day and hopefully I can get a better night's sleep tonight.

- Paul

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Eileensulliv's picture
Replies 5
Last reply 1/3/2017 - 12:21pm

Good morning and happy new year! I have not posted in several months, but do read posts from time to time. I figured it was probably time for an update...

I was diagnosed Stage IV in January 2015, which was a recurrence from my first time with melanoma in 2006, Stage I. In February 2015 I had surgery to remove the tumor from my back, and started the ipi/nivo trial at John's Hopkins. I could only tolerate one dose of the combo, and was hospitalized a few times due to what we now know is my new allergy to Ct scan contrast (never had an allergy in my life before IPi/nivo, now have a few new allergies). I continued on just nivo after a short break from the first dose of the combo, and had some side effects, all were manageable. Scan in December 2015 showed NED, but the next scan in February 2016 showed new nodules in my right lung again. Continued on nivo and still getting nivo every other week presently. 

In February 2016 my blood sugar went completely wacky, and I was diagnosed with type II diabetes. My oncologist said I was probably on my way to diabetes on my own (at this point I was the heaviest I had ever been, I had stopped exercising, and had some unhealthy eating/drinking habits) but that the treatments might have just hurled me into it. My endochronoligist agreed, and got me started on twice per day insulin shots. That was a wake up call for me, and I started to make some lifestyle changes. Basically, watching what I eat and lots of exercise has helped me to lost close to 50 pounds since March 2016, and I am now transitioning from insulin shots to metformin pills! And hopefully someday I'll be able to even get off those! It is my goal to be able to actually RUN the Miles for Melanoma 5k in DC, which is usually in May... fingers crossed!

Since I have the allergy to Ct scan contrast, we have switched to just doing PET scans on me for the time being. My latest PET in October showed NO sign of disease, to which I breathed a giant sigh of relief! My next scan is on January 30th, and I'll get the results on my 41st birthday, February 2nd... nothing but positive vibes here! If this next scan is still NED, I will get to finish nivo treatments in March, completing two full years of treatments. The thought of stopping treatments and not seeing my doctor and nurses every other week is somewhat terrifying, but of course also a great relief. There are mixed emotions, for sure, and I think that is what I am struggling with the most now. 

I am (somewhat) cautiously optimistic, and have started making plans for my next steps in life. I'd like to move back to Chicago, and have even been looking into the possibility of having a baby! The docs at Hopkins said once I finish treatments they can get me into their fertility clinic to see if it's even possible for me now. Again, fingers crossed!

Thats about it for now, sorry for the lengthy update! My prayers are with all of you. I have made some wonderful friends through this board and the MRF, and am looking forward to seeing some of you in 2017! 

 

With hope,

Eileen

Eileen 

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Nicklindner's picture
Replies 5
Last reply 1/3/2017 - 12:18pm

Happy new year every one. I started Ipi/nivo on 12/15 and go in for my second dose on Thursday. I have been pretty nauseous the last few days and hardly any appetite.  Is this similar to the rash in that it is only here for a short while? After the rash nearly took over my whole body now it is almost entirely gone. 

Anyone here have these symptoms after their first dose?  Doctor gave me anti-nausea meds but they don't really help. I am trying to force myself to eat but am still dropping weight too fast. Might go in today to get blood work done - Doc wants to see what is going on. Hoping to stay on this combo....

thanks again for any insight. You all are incredible 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/3/2017 - 7:28am
Replies by: BillMFl, jennunicorn

Hello Everyone, 

I have a quick question. 

So I was recently diagnosed with a Stage 1a Melanoma at 0.23 mm in thickness, but a shave biopsy was performed. When they got the first biopsy, it showed negative deep margins but positive peripheral margins. I have gone on a lot of forums and articles reading that a shave biopsy isn't accurate for staging, but because i got negative deep margins in my first biopsy, it shouldn't have mattered correct? The original diagnoses I had of 0.23 mm would still stand correct even even though it was a shave biopsy. Please let me know your thoughts thank you.

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MichelleRHG's picture
Replies 20
Last reply 1/2/2017 - 7:38pm

I'm having my 1st infusion of ipi (10 mg) tomorrow and am scared to death. Am stage 3b and drew this arm of trial. Was hoping for pembro.

Any advice or encouragement?

Also, my PET scan was clear last week except for my groin where I had lymph nodes out Nov. 9th. Onc won't discuss with me until tomorrow but has anyone else had experience with inflammation from surgery lighting up on scan?

Hoping everyone has a blessed year.

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Anonymous's picture
Replies 7
Last reply 1/2/2017 - 12:08pm

Hello Everyone,

I was diagnosed with stage 1a melanoma about three weeks ago. I am a mess, I am only 21 years old and I dont know how I will ever move past this. The summary of my path report is..

0.23 mm in thickness

No ulceration present

No microsatellites

no lymph vascular invasion

mitotic rate of 0

it did not give me a clarks level

the only thing it did have was regression. 

Anyhow, I know that dermatologist and my doctors are telling me not to worry but I just cant get passed it. Im so scared that this is going to come back later in life and be a battle that I dont know if I can handle. I had the WLE performed already and I got the all clear, but I cant move on. It seems like I cant get a break in not thinking about it. I want to grow old and have a family be a father, do all the things I enjoy but this is ruining my psychological help. I asked my dermatologist for a support group and they had nothing, IDK who else to talk to about this. I need help, I know I do, I can't keep living like this because I know there is a very very good chance that I will never deal with this again, but the fact that it was there and threatend my mortality is scary. This is the cancer I have feared ever sense I was 18, and something I wasnt going to have to deal with until i was in my fortys at least. But now it happened and IDK what to do. I need help, I know my thoughts are all over the place and I can barely type. Everyone is telling me im going to be ok, and some times i believe it but other times I dont, and I dont want this to ruin the rest of my life. I know that the majority of stories I read online are the rare ones that had issues again later but I am just scared. I just needed someone to hear me out and for me to express my feelings. I need help you guys, I want to move on with my life but I cant. Im just about to graduate college got a really good job and this happened, Its so hard for me to go to work and move on with my life, I think about it to much and I know I need help. 

Do you guys have any advice to move on from this? IS my worry just way over the top than I should be. I know my cure rate of this is very high and its most likely done and over with at this point, but I cant deal with this. My mind is no longer thinking about what it use to.. My mortality is threatened on a daily basis and I hate that feeling. I hate waking up thinking well, I could feel a lump somewhere and go into the most fear striken state I have ever been in my life and crumble. I apologize this is so long, I just have no one to talk to.. My parents are not around, I live on my own, and I dont have good health insurance. I have a lot of obstacles in life of growing up without parents and having to go through school by myself and it hasnt been an issue for me. I always said in the back of my mind that I have my health and I have nothing to complain about, whatever happens in my life I have that and I will never complain. But now, I feel like I cant say that... I know that statistics say that I have a very good chance of never dealing with this again and I feel like I never really had cancer because there was no chemo or radiation involved. I want to move on but I cant, and I need help..

 

also, has anyone ever heard of DecisionDx-Melanoma? Apparently they gene test your specific melanoma tumor and can give your more info on if it will metastisize later down the round... It classifies it into two categories either low or high risk.. What are your guys thoughts on this? 

If you have read all of this thank you, I just needed to write down all my thoughts somewhere, cus I dont have much of a family to talk to...

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Nick C's picture
Replies 3
Last reply 1/2/2017 - 11:25am
Replies by: Patrisa, Nick C

After doing observation for 1 1/2 years, there is clinical and radiographic evidence of progression. Although I am asystematic and there is no evidence of visceral involvement, I am getting close to "going over the cliff." I feel fortunate that I have more options than I did when it came back. After going thru all the options, we agreed that pembro would be the best option. Hoping the side effects don't appear or are mild. Never been on meds in my entire life, so this feels odd.

Cancer is not new to my wife and me. She was diagnosed with breast cancer in 2007; mine was found in 2011; she had a rare form of ueterus cancer in 2013; mine came back in 2015. Once told a doctor the we were just giving it back and forth to each other...the look on his face when he thought I was serious...priceless.

I have been following posts and I know that there are some of you who are in serious situations. I admire your "never give up" attitudes. You are all in my thoughts and prayers.

 

 


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Violet's picture
Replies 4
Last reply 1/2/2017 - 5:21am

My sister was diagnosed with metastatic melanoma in April 2012 . She had a limphnode surgery in her left arm. Over summer melanoma came back. and meanwhile doctors found another metastasis in her hip. She experienced four months of the most awful pains I have ever sow and she was close to die. In September 2012. Zelboraf saved her and gave her another valuable 10 months. She went back to the university where she is teaching and had almost a normal life again.

Now, the zelboraf is not working anymore. The tumor from her arm is growing fast and her oncologist recommended Yervoy and radiotherapy. We are again in a bad situation, because the insurance provider is not covering these expensive treatments in Romania. Her previous treatment with zelboraf was possible due the humanitarian campaign organized by her colleagues at University of Bucharest. Although the campaign continues, we do not have big hopes that this time it will bring enough funds to cover her treatment with Yervoy.

I spent some time looking for charity organizations and foundations that are financially assisting patients with cancer, but I found nothing for Europe.Do you know any Financial Assistance Program in Europe or any Charity Foundation granting patients in Europe too? What I have found on internet is granting patients in USA , but I did not find anything similar for Europe. If they are also active in Europe, I would like to write them and to apply for funds if she is elligible. I sow that Bristol Myers has a financial assistance program but not running in Europe, and for sure not in Romania..

Here is the fundraising campaign for my sister, please have a look : ....//media.unibuc.ro/salvam-un-profesor-salvam-generatii/second-stage-of-treatment-the-campaign-we-save-a-professor-we-save-generations-at-10-months-of-treatment  Please share the link with anybody you think is in the position to help us or to gave us a good idea about how we can access the treatment with Yervoy for my sister. Any advise is welcome!

Violeta

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