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 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. 

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Replies by: Bruiser, CindyJ, Roberto, Mark_DC, Bubbles, Anonymous

My son noticed small sore on heel in April 2017 and went from one VAMC Dr to another, no diagnosis, just pain meds until August when sent to UPMC Wound Care in Altoona. No Dr saw him, a CRNP, began debriding and it wouldnt heal. Noticed lumps in left ground, still no biopsy, sent to VAMC Pittsburgh, Dr took one look and told him he had cancer. This was Sept 2017. Biopsy in October confirmed spindle cell melanoma, Stage 3. Finally in Dec began immunotherapy, unsuccessful, metastisized to lungs. Went for 2nd opinion at Hillman Cancer Center and told Stage 4, only option clinical trial. That was Feb 2018, but had complications and still no clinical trial started. Drs and ourselves believe this is malpractice, failure to diagnosed and mistreatment by debriding a wound of unknown origin. Has anyone else experienced this? He also has lymphedema, cellulitis, tumor has horrible odor. Please give feedback

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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 :) 

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homeinWV's picture
Replies 5
Last reply 7/7/2018 - 6:37am

Hi all, 

Hoping to find a little guidance, because I’ve only recently found out about melanoma, and am pretty frightened. Not by diagnosis - I’m 32 and just had a moderately atypical mole removed. I have another that looks like it but smaller, but my derm said it looked fine during my full check and wasn’t worried enough for either biopsy or removal. Didn’t even say it looked atypical. She did her residency at a melanoma institute in DC and has been in practice for 20 years,so I’ve trusted her judgement. I see her in 6 months, and she thinks we’ll be fine to bump to yearly checks after that.

My issue/question is determining my risk. There were two months in my mid-20s that I used tanning beds occasionally. I think once a week. I’ve never gone since then and lord knows I never will again, after all I’ve read. Now I feel like I’ve doomed myself for skin cancer. One article said that a single use increases my risk by 75%. So now I’m essentially guaranteed to develop melanoma?

We have no melanoma history on either side, but my dad did have a basal or sqaumous carcinoma removed in his 50s. I don’t have a history of blistering sunburns. It may have happened once in my life. I’m fair-skinned but do tan instead of just burning ( not that I lay out and try ). Fewer than 20 moles I think. Nothing big.

I know these factors aren’t cumulative but I guess I’m just anxious over what tanning did to my body. I’m afraid of every single spot now and find myself second-guessing whether places are new or old. Just hoping for advice, and that the atypical spot will be my only brush with the scary stuff. 

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Dwarla's picture
Replies 15
Last reply 7/4/2018 - 11:38am

Hello everyone, I had to stop ipi/nivo combo after 2 treatments because my oncologist said I was allergic to ipi. I believe that. I had a treatment of just nivo last Monday, the 25th. They wanted to check me, so I went back the 28th. In the meantime they had scheduled me for treatment for 2 weeks. Then called me and said it should have been 3 weeks and rescheduled me. I asked the NP on the 28th if that was correct and had they adjusted my dosage. First she said it should be every 2 weeks then she told me that the FDA had approved a 3 week dosage. I'm dosed at 1mg/kg. I have searched and cannot find any 3 week dosage unless it is in combo with ipi. Does anyone know what is correct? What should I do? I am supposed to go July 2nd and talk to the oncologist about changing my medicine. She thinks I was on Opdivo before these lymph nodes showed up but I was on Keytruda for around a year. Once they determined that the lymph nodes were melanoma (they had also doubled and redoubled in size) they started the ipi/nivo combo treatments. Should I stay on Opdivo? Should I look for a new oncologist? I need advice, please! Thank you!

Dwarla

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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. 

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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

 

 

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bjeans's picture
Replies 18
Last reply 7/9/2018 - 10:44pm

My husband is the patient, 3C, chest. SLNB and WLE, three positive nodes, right axilla and supraclavicular - so going in two different directions. He’s in a blinded study, nivo or nivo/ipi at a lower dose. The working assumption is he’s on the nivo/ipi arm.

We’ve been very pleased and impressed with the melanoma center specialists and staff. This is the first “huh?!” question we’ve had.

Initially he had a PET/full body CT (initial diagnostic procedure, unrelated to study), then CT and brain MRI to be admitted into the study. Every three months he gets a chest/pelvis CT scan, part of the study. He just had another one which was clear, yay.

My husband asked his doctor about a brain scan - CT or preferably MRI given that it may pick up problems that a CT may not - and was told that given the location in the chest, it’s not standard of care unless he has symptoms such as headaches. IOW, it’s statistically unlikely to go to the brain, more likely to go to an organ like the lungs.

The director (his dermatologist) and his oncologist are immersed in all things melanoma, keep up with the literature. Anything we’ve brought up b/c of forum posts his oncologist has been familiar with, whether new approvals, a study, changes in surgeries or treatments, etc.

But not doing brain MRIs periodically is surprising, since mets are tricky devils. Why wouldn’t you have ongoing monitoring, if not in-study, separately? You don’t ignore the rest of the body; why ignore the brain?

(Thinking about Doragsda’s recent posts and his wife too.) 

This isn’t a question about insurance approval. That’s a different ball of petunias, though could be related, if a center has tried to get approval and the majority of times it’s disallowed. 

Thoughts?

Thanks - Beth

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TnTA2's picture
Replies 5
Last reply 7/6/2018 - 2:53pm
Replies by: TnTA2, Anonymous

Recently, I’ve noticed a few odd spots on my skin and decided to go get them checked out. The dermo saw the mole on my back I was concerned with and said it definitely needed to be biopsied, but she felt strongly it was a dysplastic nevi. She said it is very unlikely it’s a melanoma at this point and that according to biopsy, might need deeper excision if the lab says it’s severely dysplastic as it could eventually turn into melanoma. Does this sound correct? I also had a scrape biopsy on a spot on the back of my head that started as an itchy bump, went away then started itching again. She was unconcerned with it and mentioned what type of growth she though it was, but I figure the name. 

Ive been anxious about skin cancer, especially melanoma, since I’ve noticed these possibly new and possibly been there forever spots. I have never really examined my skin for anything unusual other than checking for ticks after being in the woods. I doubt I’d have paid attention to anything that didn’t look like a tick. I’m a little relieved in the dermo’s confidence but at the same time very anxious about the results. 

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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

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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

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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

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Coach2u's picture
Replies 11
Last reply 7/6/2018 - 10:51am

I have had a tough couple of weeks. Developed colitis as a result if lpi/nivo and in and out of hospital twice. Lost 15 lbs and now on major steroids but they may not be doing the trick. They are talking recimade which has so many scary side effects. Does anyone know about this treatment? Having a tough time. MIke K.

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Olygirl's picture
Replies 1
Last reply 7/7/2018 - 9:27pm
Replies by: Paulajane

My husband was diagnosed in March with melanoma, since then he's had 3 surgery's to remove it which was successful. At his last appointment with the the doctor he asked him to take a look at a very itchy growth on my wrist. The doctor decided to biopsy it. It has been 3 weeks with no results when my husband calls to find out why it was taking so long. They told him it has been sent to 2 other pathologist for review. We we're concerned but continue with life. About 4 days later I get a call from the doctor asking for authorization to do a FISH test and explain what they found. He said it's a Spitzoid they are tough to diagnose they pretty sure it's a Spitzoid Melanoma but want concrete evidence. Does anyone have knowledge of this?

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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

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