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
Replies 3
Last reply 3/28/2018 - 5:10pm
Replies by: BerryTaylor, Anonymous, Janner

 Hi Janner,

I would like to hear your advice here. I got mole removed back in 2015 and  pathology report wasn`t excluding early melanoma arising from mole.

I am still being watched by dermatooncologists and go for check ups, however I would like to hear your opinion on my path report and how it should be interpreted. Please see my traslation below, as the report is not in english.

"Micro: Combined dysplastic pigmented nevus with nests of prolifiration of pagetoid cells. Recommended immune staining to exclude intraepidermal superficial spreading melanoma. Recommended stains are Tyrosinasa, HMB-45 , Ki-67.

Immune staining:
Tyrosinase, HMB-45 - bright positive cytoplasmic reaction in the intraepithelial component of proliferating cells with their extension up to the horny layer. In the structure of the intradermal nevus is negative reaction.
Ki-67 - positive nuclear(?) reaction in cells of basal layer in epithelium of epidermis.

Conclusion:morphologic features and immunefenotype are matching melanoma arising in a dysplastic nevus"

I had re-excision and it was all clear.

So i have a few questions if you can help me please?

1)This report says just melanoma arising with nevus, but according to immune staining it is in epithelium so looks like in situ, no? why it doesn`t state this then?

2) I believe i don`t have Clark and breslow because first pathologist that did micro considered this a dysplastic nevus with proliferating cell, correct?

3) I am checked up by dermatologist and every time i leave them with a paper it doesn`t say my concrete diagnosis(like in situ), it just has code for skin cancer and in the original diagnosis field they put the whole pathology. Does it mean they don`t consider it full in situ yet?

4) it has been already a few years, but do you think i should re-check the slides with another pathologist? Or this report is stating all needed things?

Thanks a lot!

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brodie104's picture
Replies 2
Last reply 3/2/2018 - 9:21am
Replies by: Janner, MichelleRHG

Hi everyone, I am new to this site and just have a few questions to ask since my doctor does not seem to have "time" to answer them. I just turned 26 and was kicked off my mothers health insurance and since I was covered until February 28th I was to allowed to enroll in a manged care plan until March 1st which leaves me without coverage until April 1st.

Anyway, I went for my annual skin check a month early because I knew I wouldn't have insurnace besides Medicaid in March and they found a mole on my left buttcheck (ugh) that they thought looked a little funny. The said not to worry and they'll have the results within the next two weeks. I get a call about a week later and he surgery manager from the Derms office basicaly says "the mole we removed came back as precancerous. It is mild to moderately dysplatic nevus, you'll need to come back to get clear margins". Then he hung up. I called back immediately telling them about myinsurance issue and they basically forced me out telling me a name of a plastic surgeon who accepts Medicaid.

I guess I am just wondering what to expect and I know it is not actually cancer, but I also know I now have a higher risk of developing Melenoma. I did tan in beds for a brief period of my life and stopped because my fear of getting cancer, I am fair skinned with a few freckles, dark haired with blue eyes and female. 

I am having a hard time coming to terms with this and wish I could have my derm doing the surgery instead of a plastic surgeon. I am terrified I have Melanoma somewhere else and they just missed it.

Any advice/information would be helpful. It is nice reading such uplifting stories on here.

Good health to everyone,

Brodie104

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/3/2018 - 9:38pm

Hi! I was diagnosed with stage3 melanoma in late 2016. Had lymphnode biopsy then had the rest removed. Started Interferon Alpha2b in February 2017 and finished in 2018. Ive tried so many forums online to find out about life and effects after you finish but came up with nothing. If anyone who finished treatment could help I'd be immensely greatful.

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Bubbles's picture
Replies 7
Last reply 3/4/2018 - 2:39am

Since many of you recently posed questions and noted your experiences with joint pain and arthralgias while on immunotherapy, I thought it might be helpful to offer information to all of you in one place.  First of all, so very sorry for what you are going through!!!!  Secondly, sadly - joint pain is a very common side effect to immunotherapy.  Like most side effects from these treatments, arthralgias can range from a bit of discomfort to completely debilitating pain.  Most of us on immmunotherapy have dealt with them to some degree.  "Jubes" on this forum certainly endured more than her fair share!  You can use the search bubble above to find her posts and information she shared/attained.

Here are some other related threads from this forum:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/arthritis-after-multiple#comment-91223  

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/joint-pain-1#comment-110315  

Once again....while folks spamming this site with the promise of pass ports and other goodies can post with impunity...if I share more than two links in one post...even ones from this very forum....I trigger the spam blocker!!!  

More below....

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Hello all,   I have a question regarding possibly changing facilities where my wife is seen.

She was diagnosed Stage IV in July 2017 with two brain mets.   Primary had been on left calf in November 2016 and had WLE and SLNB at that time with clear nodes and clear scans, so monitoring only.   In July she had balance problems and we found a 26mm tumor in cerebellum and 10 mm tumor in left occipital area.   Had craniotomy to remove larger tumor, gamma knife on both locations, did 4 doses Ipi/Nivo  starting late September and has been on Nivo alone since then.   Had some radiation necrosis but 4 doses of Avastin seems to have stopped that in its tracks.  Cerebellum remains clear and occipital tumor is down to less than 3mm and PET/CT in December showed no metabolic activity at either location, so she is doing very well.   No tumors elsewhere in her body.

She's been seeing Dr. Freeman at Angeles Clinic who coordinates with a local oncologist for her infusions and scans near home.   She has seen Dr. Hamid at Angeles a couple of times also.    Dr. Freeman is moving to City of Hope in Duarte, which is just about the same distance from our house as Angeles.   We need to decide whether to move over to City of Hope with her or stay at Angeles.   I would expect that Angeles will be hiring a new melanoma specialist oncologist to work with Dr. Hamid, and she would likely wind up seeing the new person (that's an assumption on my part, but I'm sure Dr. Hamid has a full patient load already).   City of Hope appears to be a very comprehensive facility with everything you might need under one roof.   Angeles is a fairly small clinic with an imaging center associated with them.

Does anyone have any experience with City of Hope?   Just looking for feedback as we try to decide what to do.    Thank you.

Dave

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newmanmark's picture
Replies 3
Last reply 3/1/2018 - 1:12am

Hey guys,

It has been a while since I have posted.  Despite still having a tumour on my pancreas I have been doing well.  In December of 2016, I started the IPI/Nivo trial (Canada) and did quite well until my pituitary was damaged and I experienced severe arthritis.  I remained on the nivo for 7 months and then decided to take a break.  My tumour has shrunk from 8.5cm to 2.1cm in that amount of time.  Pretty amazing!  However on the latest CT it shows the tumor is the same size it was on my last CT (October 2017).  Im happy it hasn't grown but would prefer it to be gone!  I asked my oncologist if it could just be scar tissue and not necessarily the melanoma.  She thought there was a chance of this and it could just be inflammed tissue but they don't really know.  She said at this point it is up to me if I want to continue with the break or continue with the Nivo.

How is this situation being tackled in the U.S. when you get to a point where the tumor stops skrinking?  biopsy, PET scan, etc??

Thanks

Mark 

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karmendowell's picture
Replies 3
Last reply 3/1/2018 - 1:04pm

Hi everyone! 

I’m new here, just got the call on Monday. I’ve learned so much  since yesterday reading thru all of your posts. I wish I had know more when I asked my GP to take a mole off last week. He did the basic biopsy (scrape I think it called).  I regret that but I’m also happy that I actually went in to have it removed. It’s been nagging at me for awhile. Anyway.... my question is about the pathology report.  Since it wasn’t a biopsy done by a fern, ate the results not as complete? I’ll copy and paste the results here. I’m just worried about it being worse that it shows on this report. I realize the Breslow could be deeper but is the rest of it reliable?  Here is the report....

Histologic sections demonstrate a shave biopsy of
- skin with an atypical melanocytic proliferation
- with epidermal and dermal components. Within the
- epidermis, severely atypical melanocytes are seen
- in nests and as scattered solitary cells. There
- is both confluence of cells along the
- dermal-epidermal junction and pagetoid spread of
- single cells. The tumor extends inferiorly from
- the base of the epidermis in small budding nests.
- The tumor also extends down the adnexa. Focally,
- atypical melanocytes are also identified within
- the dermis.
F A DIAGNOSIS   WZV
- Malignant melanoma, 0.6 mm (see synoptic report).
F A COMMENT   WZV
- SYNOPTIC REPORT:
- Procedure: biopsy
- Laterality: left
- Tumor site: wrist
- Tumor size: not provided
- Histologic type: malignant melanoma, superficial
- spreading type
- Maximum tumor thickness (Breslow depth): 0.6 mm
- Clark level: II
- Ulceration: not identified
- Macroscopic satellite nodules: not identified
- Regression: not identified
- Lymphovascular invasion: not identified
- Neurotropism: not identified
- Margins: positive; melanoma in situ focally
- involves the superficial edge of the shave
- Mitotic rate per sq mm: 0
- Microsatellitosis: not identified
- Pathologic stage:
- TNM descriptors: not applicable
- Primary tumor: pT1a
- Regional lymph nodes: pNX
- Distant metastasis: cannot be assessed

I have an appointment tomorrow for the WE

Thank you!! 

Karmen

 

 

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JeffinSeattle's picture
Replies 2
Last reply 3/1/2018 - 4:52pm

One year ago today we were waiting for the results of a FNB done on my wife's swollen lymph node. It came back "suspicious of melanoma", and thus began our journey in melanoma. Actually, it continued our journey. Two years earlier she had a mole removed from her back. It turned out to be melanoma, .74mm and unulcerated. 

After a PET scan we learned that the melanoma had returned and was officially in a lymph node in her groin area. The doctors seemed to be happy that nothing else was lighting up, so we took that as a bit of good news. We were referred to Dr. Byrd, a surgical oncologist, at SCCA. At first, he was suggesting we talk to a medical oncologist about starting with drugs first and not surgery. The medical oncologist thought surgery first was the way to go so that's what we did. She had a CLND on May 4th, 2017. Other than the enlarged node, one other had a few cancer cells in it. 

She started Pembro in late July and did pretty good with it. In November, her MRI had some nodules in her lung that the Doc was worried about. They did a needle biopsy and that came back negative, which we took as great news but the Doc said false negatives were rather common. So, another MRI was done in December and all of the nodules were either gone or had shrunk dramatically. The Doc felt pretty good that they were there because of an infection and were not cancer. 

In December, my wife's work group switched insurance carriers and thus began our ongoing battle with Kaiser Permamente. They would not cover Pembro, so we switched to Nivo. So far her big side effects have been nausea and occasional headaches. Her next scan is later this month, so scanxiety is starting to kick in a little bit! 

We feel good that the PD-1 drugs are working and that we'll be able to keep the BRAF drugs in our pocket for awhile longer. 

It's been so wonderful reading many of the posts on here. Thank you all for sharing your story and for giving us hope. I'll post when I can and share the ups with the downs. I know there are new drugs coming online quite often, I hope we can find something that maybe won't cure melanoma, but will at least put it into quite mode and make it managable. 

I worked at the Leukemia & Lymphoma Society for 10 years and used to tell people how amazing the research and drugs we were helping fund were and how they were helping with so many other diseases and cancers. Sure enough, some of those drugs are now being tried on melanoma.

Keep up the good fight everyone!

Jeff and Amy

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Sharon93065's picture
Replies 6
Last reply 3/5/2018 - 11:47am

I took glucosamine chondrotite for years due to osteo arthritis and it helped.  Then last spring i dropped it and everything else going into combo treatment didn't want anything interferring with results.  Dec '17 finally weanted off prednisone and i am on 1mg of opdivo every other week. Since weaned off prednisone the joint paint in my ankels, knees, buttocks is pretty bad.  Hurts to walk, hard time with stairs etc.  I asked dr if i could start back on glucosamine and he said yes.  The Meloxicam prescription i have had, 7.5 mg. He said i could take one or two a day but not to exceep two weeks.  Worrisome for kidney damage.  So i only took for 3 days and quit.  Saving them for bad flareup.

Any advice from others on this subject.  Water aerobics helps.  Can't wait for it to get warmer to use our solar heated pool.  Don't want to use ymca pool, too much chlorine.  

My recent mri had two  new small spots show up, will get new  mri in 3 weeks, but everything else from the brain down is good, the two new nodes in my gut, one is gone and the other shrank.  The mass in my lung gone, and even the groundglass cannot be seen.  

Thank you all for your support...and this forum.  

Sharon

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Replies by: aldrichdesigner

Hi all,

I hope everyone is doing well. I posted my story about a week or so ago and the amount of support and response that I received in just one week was phenomenal. It can be a little hard to "get involved" here as it can be very time consuming, a commodity that a lot of us don't really want to waste. Or in my case as with I'm sure many others you end up sleeping that time away unintentionally which is a shame and can be very frustrating. Anyway thank you to all that interacted with my first post.

Now, onto my current issue. If you haven't read my story yet, you can do so here. It explains that I'm a stage 4 patient taking both Keytruda and Zometa due to significant spine deterioration as well as lesions in other areas as well. So, about 2.5 weeks ago, I received my 10th or 11th treatment of Keytruda since starting back in July. We took one break after my 4th treatment because I was having some extreme ill side effects. After skipping one treatment, everything seemed to clear itself up and we went back on the Keytruda/Zometa without issue albeit I was still having a decent amount of joint/muscle/nerve pain. But it was manageable and definitely worth it for the results we have been seeing. I only get the Zometa originally every 6 weeks but we changed it to 9 weeks what will be 9 weeks ago on Friday when I'm due for my next infusion. 

A lot of you that read my story seemed to think that the majority of my pain was coming from the Keytruda though rather than the Zometa and that moving to 9 weeks is probably not going to do a ton. Well, I'm starting to think that you all might be right because exactly 1 day after my last treatment (3 weeks ago friday) I woke up with tremendous joint and muscle pain in my knees and feet that was beyond anything I've experienced to date. I actually thought it was an extreme gout flare up because I do have gout and the joint pain from keytruda is very reminicent of that of a gout flare up. But this time it was in my knees too and usually my gout attacks do not impact my knees, but I've heard it's possible. Anyway, I contacted my doctor and we treated it as if it was gout and got a bunch of anti-gout meds and some antiinflamatories along with a lot of rest and have just been babying my feet. Well, I'm still in a pretty good amount of pain that I'm still using my cane, it hurts to stand up, I can barely bend to pick anything up and stairs, don't get me going on stairs. I've needed a lot of help lately just getting around and stuff. Now keep in mind, some of this is from my back being the way it is but over 3 weeks ago it wasn't this extreme. 

So, onto my main question for you all. Do you think it would be a good idea to skip my infusion on Friday? With the idea that it would allow my body time to "reset" again and hopefully this joint pain subsides back to normal before we start back up again. I know many of you have experienced joint/muscle pain and discomfort on Keytruda before, did it clear up after you went off treatment or does it take considerable time for that to fade? I'm starting to actually get around the past few days although my toes and ankles are still pretty tender but I can muscle through it enough to get around and I really don't want to go in Friday and destroy all of that by getting a treatment and just being in bed ridden pain all over again.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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Lori Bierschwal's picture
Replies 10
Last reply 3/13/2018 - 4:46pm

HI everyone- 

I am new to this site as far as posting, but I have been reading one's posts for over a month trying to soak up knowledge! I was diagnosed with Melanoma a few months ago- Dec 1, 2018, to be exact. It's funny but you remember dates like those. I was shocked and broke down so much those first few weeks. Then I went on a rampage of digging to understand this. Afterall, Melanoma is so misunderstood. People take skin cancer so mildly. Anyways, my anger today results from how my General Surgeon handled my case. Unfortunatley, I did not go to a cancer center at first. I had a punch biopsy in Nov,2018 from my G.P., which led to the diagnosis. Afterwards, on Dec 12th I was directed to a General Surgeon (did not specialize in Mel). He said initially that after looking at the 1st path report that he wants to do two procedures: SNB and wide excision. You see, I was .76mm Breslow and Clark level 3 with Mito at 1/  he thought it would be good to do the snb. I had already done some research and agreed (even though I was in that phase of .76 borderline for snb.  Moving now to Jan 18th 2018...day of surgeries. To my surprise, as I lay in the hospital room with I.V.'s in my arm an hour before surgery, the nurse informed my that only ONE procedure was on the books for me- just the Wide excision! I was dumbfounded to say the least. I knew the chances were not great that it had moved into my lymph nodes, but we were going to make sure! My surgeon entered the rrom 5 min prior to surgery time and was not even going to tell me of the change of plans! I also knew that the SNB should be done PRIOR to the WLE. But i let him do the surgery ...12 days later I get the call on my path report: it was twice the depth (breslow)...now it is 1.6mm, with a Clark Level 4 !! They said he now wants to do a SNB. I said NO and that I wanted a copy of my path report NOW. So, here we are today, knowing that the mapping part of the SNB could be screwed up because he did the WLE first. But I called Siteman Cancer Center in ST Louis,MO and in two days I will see the leading researcher and surgical oncologist there. He is the tops. I am thrilled to say the least! He is doing his own path report and I will talk and set in motion with him the next steps. Really, I have not even been staged yet- Just 1B according to latest, without doing the SNB. I have been encouraged to learn of so many of you that are doing research to become your own advocate in this fight! We have to! And keep doing it- keep up with the latest developments! And THANK YOU all for being on this site, so now I can recieve much needed encouragment and hope to give some back as well! ((HUGS))!!

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tedtell1's picture
Replies 4
Last reply 2/28/2018 - 11:54pm

Hi;

Just had my first infusion of Opdivo (just Opdivo). Everything went very well, just got a little tired the day after except I woke up yesterday morning and this morning with significant pain in my hips. Really sharp pain. Enough so I could no longer sleep after about 3AM. Has anyone else experienced anything like this? It is till bothering me, but doesn't get any worse or better when I am up and moving around, just moving slower and struggling a bit with stairs. Curious, is this what they mean by body aches? The rest of my body feels pretty okay. Thanks people, as a newbie I have found the information here to be so comforting and helpful!

Thanks again,

Ted

Ted

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ejsprague2006's picture
Replies 4
Last reply 3/2/2018 - 12:25am

I have just found this forum, Have read quite a few of the postings here, and feel I have finally found people that have been in my shoes and might be able to shed some light on MM for me.

In July of last year, during my first physical in many years, the doctor noticed a lesion in the upper middle of my back. He biopsied it and informed me that I have malignant melanoma and was sending me to a surgeon at City of Hope. Three days later I met with the surgeon, who scheduled me for a pet scan, surgical removal of the lesion, which was found to be 1 mm thick, and a second lesion found on my lower back, at the waist, which was found to be in situ MM. he performed a lymphectomy in my right armpit and removed six lymph nodes which all showed negative. Unfortunately, the surgeon is great at what he does, but thoroughly lacks in the communication department. I have asked multiple times for any info or feedback to his findings, and all he would say is "You're okay" or "Don't worry". I never recieved "Facts".

   Since then, I have been to 2 dermatologists, have had eight more nevi removed for being "dysplastic", and 1 Basal cell lesion removed. And to date, I still have not had a single professional explain what my cancer means to, or how it affects, me. "Come back in three months" is the most common statement I hear.  

 All the info I have has been parsed from the internet. But I know that each case is as individual as the person, and there are so many factors that affect it.

  A big question that I need answered is what does it mean to have 2 lesions growing 10" away from each other? Is that bad? Is it worse, or the same as just one? What "stage" is my cancer? And about a million more questions.

I would truly appreciate any help or answers that anyone can give.Thank you and keep up the good fight.

 

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CancerSpouse's picture
Replies 12
Last reply 3/3/2018 - 1:08pm

Hey Cancer Warriors:

Happy to share some good news from John's latest scan results: The remaining tumor on his left adrenal gland has continued to shrink. It's down 10 mm (to 27 x 20 mm) since he started on Keytruda last October.

The left deltoid tumor that had been directly injected with SD-101 as part of a clinical trial remains MIA (missing and inactive) following his last injection in January. The original, canary-in-the-coal-mine tumor removed from the back of his head has also not reappeared. And there are no new lesions. 

Hoping the trend continues!

Side effects have diminished since going off the trial drug. Even the oral ulcers are less severe. Rash flares up that are tolerable. Now we can just focus on regaining his lost weight, about 10 pounds. (So far, I've gained most of it myself.)

Thank you to EVERYONE for your support and advice. You are stellar folks, and I've found this group invaluable.

Fight on!

Carol   

 

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Raeofsonshine's picture
Replies 13
Last reply 3/7/2018 - 4:43pm

As a stage 3 warrior I wanted to share my experience with the ipi/ nivo combo.  I had two rounds of scheduled 4. I lost my thyroid and got immunotherapy induced hepatitis. I also got the rash.  I haven’t had treatment since the very end of December due to these issues and working to resolve them. AKA steroids. In the last few weeks the blood glucose has been up. And up and up. And finally UP. Went in today with the hopes of getting back to treatment, Opdivo only and was told nope, we’re stopping. I now have Type 1 Diabetes.  I can handle the diagnosis. I’m scared to death about the end of treatment. Like I’m not fighting anymore. I hope the combo did enough. 

Thanks for letting me share. I wish you all the best of luck. Keep fighting!! 

 

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