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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dmp's picture
Replies 5
Last reply 7/21/2017 - 10:39pm

Hi all,

I was diagnosed with a 1.15mm, non-ulcerated, superficially spready melanoma on my right inner thigh just above my knee at the end of May by the Cleveland Clinic.  About two and a half weeks later, I had a wide excision and SLNB.  One of the two sentinel nodes came back positive for rare cells.  The recommendation from my doctor was that he would do it and recommended it as the current standard of care.  I did not get specific sizing back after requesting it.  So, I went to University Hospitals for a 2nd opinion and they got all of my reports and slides from the Cleveland Clinic (the cancer centers are about a mile away from each other and they can access records between hospitals.)  The sizing that came back was that the largest group of cells was .05mm.  The cells were in the subcapsular region according to UH but were termed parychemal region in the UH report.  So, I will just assume there were some in the parychemal region and most were subcapsular.Several studies in the past decade call into question if micrommetastases less than .1mm in SLNs should even be counted as positive.  UH's surgeon recommended CLND, but they called me to schedule a PET scan after their tumor board reviewed my case.  In the meantime, I was able to speak with Dr Charles Balch through a friend of my uncle's at MD Anderson since I had a question on the Melanoma Intergroup Trial that was referenced in the MSLT-II protocol.  It turns out that Dr Balch was a reviewer on the MSLT-II.  He was comfortable stating over the phone that the risks of CLND and immunotherapies were greater than going with observation.  The medical oncologist I spoke with yesterday understood that I had gone "down the rabbit hole" to find out there is no real right decision and suggested that unless they found metastases after the CLND, she would not recommend any immunotherapies at this time.  So, doing the CLND to qualify for trials at this time doesn;t make sense.  My sister-in-law, a pediatrician, reviewed the MSLT-II study and didn't feel that a CLND was worth the risk at this time.  I had a CLND scheduled for next Monday, but I postponed the surgery when the scheduler called today as I am not comfortable with the possible risks of lymphedema.  If my tumor had been ulcerated and/or the metastases had been larger in the SLN, I wouldn't even have thought twice about the CLND.  Maybe the PET scan on August 1st will provide more information.

Should I try Mayo or MD Anderson for a 3rd opinion?  Am I stressing out too much about this decision?  I am an active person who runs, plays ice hockey once a week or more, windsurf, and race sailboats.  Is my fear of CLND complications and  lymphedema overblown?

Thanks!

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Sharon93065's picture
Replies 16
Last reply 7/21/2017 - 10:28pm

Thank you for all of  your posts.  They have been so very helpful.  I have had two infusions of Opdivo/Yorvoy,  with two to go,only side effect is the rash/itching and tiredness.  TSH is down to .03 Dr said he would look at that after my next blood tests. Thank you for those that gave advise about thryoid medication.  And thank you for mentioning the brain fog...

If anyone has better solutions for the itching rash let me know.  I now take Allegra every morning.

the 24 hr seems to only work 8 but have to live with it.  I use aloe vera, coconut oil...the other day i used Trader Joes Tingle Tea Tree Oi, Peppermint, Eucalyptus body wash, i got wet in the shower, and put in all over my body thinking I would just leave it on 20 minutes.  I also saturated my hair with the same type of shampoo.  I was in heaven, i didn't wash off for 5 hours.  Then after shower i lather coconut oil all ofver my body.  Some days the rash flares up and i try to hard not to scratch, and some days it's like tiny dried up sores.  Mostly on my chest, neck, upper back.  At night when i take off my clothes i have to immediately put some oil on my underweat line etc.  I am rinsing my clothes twice, not dryer sheets, rinse.  And only cotton doesn't leave marks on my body.  I would wake up and my whole left side would be in hives from my night gown.  I'ts 60 cotton and 40 polyster.  So now I'm sleeping in 100% tee shirts until i buy  new nightwear.

Andy other suggestions?  I have dermatologist appt next week to see what he has to say.  Plus i haven't seen him since I have been diagonised with stage 4 metastic melanoma, lymph nodes, lung, back.

Good  news, I no longer feel the tumor on my back. 

 

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J.bun's picture
Replies 2
Last reply 7/21/2017 - 5:57pm

I've learned that medical professionals (doctors, nurses, techs, etc) can say things/react in ways that are either comforting or upsetting. Regardless, I do think what and how they communicate is a method of them to personally cope and provide perspective.  

So, while having a recurrence in multiple lymph nodes in my groin is not what I was "expecting" since my successful BRAF treatment & Keytruda - all my PET CT and MRI scans showed it is the only area affected. Along the way in the past week, one of the doctors said "you take the good news you can get."

At the interdiscplinary hospital I go to, my case made it to the tumor board - wherein multiple doctors from different disciplines discussed a recommended approach.  They determined I am going to follow a 3 step protocol (1) immediately go back to Taf/Mek pills to bring down groin until surgery (2) have groin surgery to get the melanoma out (3) follow-up/continue with Keytruda infusions.

I learned that this recurrence was actually different lymph nodes than those affected in Nov 2016, but part of the same region/lymphatic system in the groin.  The working hypothesis is that the Keytruda may actually be working (since the previous hypermetabolic nodes are 'dead' & melanoma not showing up elsewhere), but apparently there are some PD1 pathways that do not respond as well to Keytruda.  My doctor indicated he had seen other patients where certain tumors respond and others don't - I know several on this board have this experience.  At this point, hopefully removal of the problematic area will help me in the future...

So, I realize surgery is a huge undertaking and of course potential recovery/lymphadema - but I agreed this was the path to go on.  They said if after surgery I have another recurrence, we will then evaluate how to best target the area(s) or try out ipi/nivo again.  

It is interesting to learn from everyone on why doctors are making certain treatment decisions at specific points in time.  

Thanks for the good wishes in the prior thread.  

- J.

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Bradley75's picture
Replies 4
Last reply 7/21/2017 - 5:48pm

After my latest MRI and PET, all my lung mets have resolved.  I have no FDG Uptake in my lungs at all.  A half dozen doses of Keytruda after failing the Ipi/Nivo combo have paid off.  Also, the favorite phrase for all of us here, no new mets.  That phrase from the onc never gets old.

Now for the twist.  The tumor in my back is growing.  FDG uptake is up to 13.2.  It seems the Keytruda may be slowing it, but it can't overcome it.  The tumor is causing me considerable pain and is pushing against my spinal fluid.  The tumor is in the bone of my 5th rib and kind of looks like a lollipop sticking into my spine.  After consultation, conversation, and everything else I have decided surgery is the best route.  My Mayo medical teams all say radiation is a bad idea right now.  Even the radiologist doesn't recommend radiation because we already radiated that tumor back in December and it didn't kill it.  This tumor was inoperable back in December.  It is now in a spot where the surgeon feels surgery will help.  The tumor is about 2.5 inches at its widest so there is a bit to remove.

The plan is tumor removal on the 27th or at least as much of the tumor as they can get.  They want to get me back on Keytruda ASAP after surgery in the hopes that it will knock out all the scraps left behind.  They have said radiation is a better option at that point, if needed.  This is the only cancer I have left right now, so I am going for it.  Any experience out there with this type of surgery?  Curious about any thoughts you all might have?

As always, we fight on!

Brad

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Dore's picture
Replies 5
Last reply 7/21/2017 - 4:04pm
Replies by: Dore, Anonymous, Janner

I recently had a biopsy of a mole on my stomach.  I am scheduled for WLE on August 9.  The nurse told me that basically it was as close to a melanoma as it could be without being a melanoma.  After reading the path report, I am freaking out a bit because it pretty much says they can't exclude the possibility of it being a melanoma.  Any help deciphering the report would be greatly appreciated!!

------------------------------------

Diagnosis:

-Compound Dysplastic Nevus, Severe Atypia

-The lesion involves the deep and peripheral edges of the biopsy.

​Please note:  The specimen shows concerning cytologic and architectural atypia. The atypical melanocytes are large and epithelioid and there are patterns of incomplete pagetoid spread. In addition a mitosis was identified within the junctional component. We cannot entirely exclude that the changes represent a partial biopsy of melanoma and wide full thickness re-excision with adequate margins to ensure complete removal and to allow further pathologic evaluation is recommended.

Microscopic Examination:
Sections show a thin biopsy of skin. There is proliferation of atypical melanocytes both singly and within nests at the dermo-epidermal junction and singly and within nests in the underlying dermis. The melanocytes are large epithelioid cells showing prominent villi. An occasional mitosis was identified at the dermal junction. There are focal patterns of incomplete pagetoid spread. Lesional cells are highlighted on Melan A stained sections.
---------------------------------------
Thanks in advance for any insight you can offer on this report!

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/21/2017 - 2:29pm

I just read that Senator McCain's gioblastoma newly diagnosed is related to his previous melanomas going back to 2000.  Really scary!  I hate thinking that the mole on my shoulder that was removed last year could potentially pop up as brain cancer in a decade or so.   This disease scares the snot out of me.  My first year post-cancer was full of denial.  So far this second year is more anxious and frightening for me.

 

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Photopassion's picture
Replies 1
Last reply 7/21/2017 - 1:51pm
Replies by: sister of patient

I just received my pathology results from a mole that I had biopsied. The mole in question used to be a smallish flat mole that was uniform in color. I thought it randomly appeared a few years ago but wasn't really sure. Recently, while I was pregnant, I noticed a small part of the mole had changed and was now a dark brown that didn't match the rest of the mole. I was worried about the change and decided to have it biopsied.

Today the PA called me back to say that it was a benign Spitz nevus but they recommended removing it with 2 mm margins to be safe. She didn't give me any other details and I wasn't really prepared with questions.

After researching a bit,I read that it's very difficult to distinguish between a Spitz nevi and melanoma. I also read that they mainly occur in children (I'm 31). The pictures online really look nothing like my mole either.

Has anyone else received this diagnosis or have any thoughts? It doesn't seem right to me so I am requesting the pathology report and a second opinion. It's really freaking me out and I'm not really sure what to think. If it's not very deep then I guess getting the excision would be good if it were actually a melanoma. Ugh, I really thought this part would be straightforward :(

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Scooby123's picture
Replies 6
Last reply 7/21/2017 - 12:15pm

Hi all plan is PD1 so any one who has experience with it much appriciated . Starting ASAP , cannot do radiotherapy node too near wind pipe and could damage it.

Thanks

Scooby ❤️

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Jubes's picture
Replies 15
Last reply 7/21/2017 - 12:15pm

Hi all

just wanted to share with you that my biopsies fromfriday are clear. They took five biopsies from 2 sites in my chest and all clear of melanoma despite very hot pet scan

it seems the hot spots were likely granulomas. They didn't check the liver and neck spots but assume they are also not melanoma 

we will continue to check with 3 monthly pets but even a false negative is better than a positive

thanks to all for suggestions if it progresses

anne-Louise 

 

 

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/21/2017 - 11:23am

 My husband had to stop the opdivo/yervoy treatment after three. He was on a break for a month (after a few days in the hospital) to help rid the side effects.  Next week he will have a  scan and talk to his doctor about the maintenance.  From what I am reading it will be opdivo every two weeks.  I am not sure if he will be willing to try this since his side effects were so bad with the combo.   Can anyone shed light on the fact that it wil be just the one med and perhaps not nearly as bad?  I understand everyone is different--I am just not ready for him to "give up".  I feel he needs to at least try it and see how his body responds.  Any words of encouragement?  Thank you in advance!

Jim's wife

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ImMark's picture
Replies 5
Last reply 7/21/2017 - 11:18am
Replies by: Sharon93065, ImMark, J.bun

Hi everyone,

September 2016 I completed 3/4 ipi/nivo infusions for stage IV melanoma. But had to stop as toxicity became too much.

Following treatment I had my lymph nodes removed as they had reduced but still had Melanoma present.

Fast forward to yesterday and I received the results from an MRI which showed an 8cm tumour in my pelvis. My Oncologist now has me starting on BRAF as I tested positive for the BRAF gene.

I was sad that the ipi/nivo combo hadnt worked as well as I had hoped. But my Dr told me that it is still an option for me down the track as I had a response.

Has anyone gone to BRAF following a response to the ipi/nivo combination treatment?

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Nemesis's picture
Replies 4
Last reply 7/20/2017 - 10:42pm
Replies by: stotesbery, Janner, Anonymous

Of moving from stage I to further stages. I can't seem to find a definite answer. Is there one?

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Ingekk's picture
Replies 7
Last reply 7/20/2017 - 8:48pm

Hi, I am 40 years old and live with my family in Norway. I found out in May that may melanoma from 15 years ago has come back. I have one large lymph on on my neck under my ear that is almost 3x3 cm large. PET scan shows no other activity. I am going to have a lymph gland removal on Wednesday. They are removing all lymph nodes, The muscle Sternokleido Mastroideus and everything else in the area. After this I am supposed to have radiation therapy for 6 weeks.
Is this the way to go? I asked about this new therapies, but they told me that it is not for me as it has not spread further?
I am really scared right now and crossing my finger that this surgery will make me NED.

Inge Kristian

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jennunicorn's picture
Replies 9
Last reply 7/20/2017 - 7:22pm

Since being told my TSH number was high 2 weeks ago, meaning my thyroid is underactive, I have noticed that I am getting a lot more fatigued than usual. Mostly in a weird foggy brain, feeling off, not quite myself, tired way. For those who have also experienced hypothyroidism, does this sound similar?

I will see the nurse practitioner tomorrow before my infusion since my oncologist is on vacation this week, and will let her know all of this. It usually takes until the end of the day to get the TSH blood test back, so I won't know if it's gotten worse until tomorrow evening. 

When others have started on Synthroid (levothyroxine), how long did it take before you felt more normal again? I am in the process of interviewing for a new job, I have my second interview on Friday, and if I get this job I really need to be back to more normal energy levels, so I'm stressing a little bit about this if you can't tell. 

 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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J.bun's picture
Replies 10
Last reply 7/20/2017 - 6:48pm

The last week has been tough.  After clear scans and what appeared to be a complete response in May, it appeared to be time to switch from BRAF pills (Taf/Mek) to "maintenance" on Keytruda.  The idea being we got the maximum benefit from the pills and the Keytruda would keep things at bay/teach my immune system to fight off any malignant cells in the future.

Like so much of this experience, this has not gone "according to plan."  Last week, I noticed a lump in my groin (same place as Nov 2016). While the thought of pseduo-progression came to mind, I knew it wasn't -  and this was confirmed with fine needle biopsy.

Later today I am having a full body PET CT and brain MRI - hopefully the melanoma hasn't spread beyond my groin.  On Weds. I'll find out the results and hear about next steps for treatment.  I won't be surprised if I go back to Taf/Mek, but know I need a long(er) term treatment plan.

I'm not done fighting - but man, am I scared.  I think of you all, my fellow comrades - as we fight together. 

- J.

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