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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tedtell1's picture
Replies 3
Last reply 2/17/2018 - 8:36pm
Replies by: doragsda, tedtell1, Bubbles

Hi;

I am Ted. I have had a bit of a weird experience. A few months ago I found what I thought was a subcutaneous cyst on my back over my shoulder blade. It was quite deep under the skin with nothing on the surface. Checked with my primary care, no said, no worries unless it bothers you. Fast forward to January, lump is burning a little and surface has become a little reddish, go in to have it excised in a general clinic, the PA upon opening me up says, "oh, this isn't what I expected". Sends it off for biopsy. A week later I get the results, The tumor (not in a lymph node by the way) is a secondary metastatic melanoma. We have no idea where the original tumor was. I have now met with an onco, pet scan is clear except for leftovers in my shoulder which will be excised in the next month. MRI of my brain clear as well. That was all good news. I am diagnosed stage IV, is that  appropriate since it has not spread to lymph or organs? I am starting Nivo every two weeks for the next year. Would love to hear if anyone else has similar experiences and what I can expect from the Nivo infusions. Do people have ports? Any info is appreciated.

Ted from Minnesota

 

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In the Profile section, year of diagnosis only went to 2015. It's been updated, so if you left it blank it can now be added. (I had wondered about year when reading a long history and it just said "January" for initial diagnosis. This year? Five years ago? The board communications guru was nice enough to fix it right away.)

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Jac1211's picture
Replies 2
Last reply 2/16/2018 - 10:47am
Replies by: Janner, bjeans

I was diagnosed in situ at age 29, only 7 months ago. My mole was a small change that seemed to happen over night. I had been for a mole check only 4 months prior and everything went well. The change prompted me to go back in and I’m glad I did.

Fast forward till now. I go every 3-4 months for full body checks which is normal but I’m noticing some small changes in between that time and have scheduled a visit to get that one spot checked. So far so good. Today I got another spot removed (1 month away from my full body check) because I took pictures and saw the change. My doctor told me that she wants me to see the nurse practitioner for a new set of eyes for my next full body check. She also said they’ve been seeing me a lot and want to see me every 3-4 months not 2. I asked her straight up, if she thought I was just being paranoid and she didn’t say anything. Of course I feel paranoid, my melanoma presented as a minor change. Has anyone had a doctor say they need to see another doctor / NP in the practice? And has anyone felt that their doctor made them feel overly paranoid? I feel like an annoying patient by her attitude and that is the WORST feeling ever.  But if it wasn’t for my hypersensitivity, i could’ve had a worst outcome.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/15/2018 - 8:50pm

Hi --

 

I had nodular melanoma just about a year ago on my back, and now am feeling a couple of small lumps under my skin -- almost hard to detect.  I had a wide excision done and had four doses of Yervoy.  One lump is under my front rib and the other is close to the original site.  I'm waiting to hear back from my doctors on next steps, but has anyone ever had this happen where it wasn't melanoma?  If you did have lumps that were melanoma, did you have any other symptoms?  Feeling very anxious....

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obtu.bt's picture
Replies 7
Last reply 2/16/2018 - 7:35pm

Dear all,
My oncologist suggested me to make a pd-l1 expression level test.
I did it and I do not have pd-l1 on my tumor.

So should I use opdivo or not?
I am confused about what to do for further step.

Effectiveness of Opdivo increases with higher pd-l1 level...

Awaiting your comments.

Have a nice day.

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Bubbles's picture
Replies 15
Last reply 2/17/2018 - 12:00pm

Hoping you hear good things at your doctor visits!  Happy Valentines day to you all.  Celeste

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Anonymous's picture
Replies 1
Last reply 2/14/2018 - 12:23pm
Replies by: Bubbles

http://www.healthmonitor.com/your-health/written-article/when-people-say...

Comment: ”Your cancer was caught early, so you don’t need to worry about it.”
When Dianna Smoljan, 50, was diagnosed with an early melanoma three years ago, she thought, Wow, I’ve gotten really lucky twice. More than two decades earlier, the public relations consultant from Mokena, IL, had been diagnosed with cervical carcinoma in situ, a Stage 0 cancer that was removed in her gynecologist’s office.

Left untreated, melanoma becomes life threatening. In fact, Dianna’s dermatologist told her that her husband had saved her life by spotting the irregularity on her back early. “When all is quiet and you allow yourself to think, the what ifs overtake you,” she says. “Yet you feel bad for wanting someone to understand, because you know it could have been worse. Most people said things like, Oh, you had a mole removed. People tend to dismiss early-stage cancers as, It’s early. It’s out. You’ll be fine.”

Comeback:  ”I was lucky to find it early, but I still need to sort through my feelings.”
“Support is a double-edged sword,” says Dr. Greenstein. “When you have cancer, people will say the wrong things now and then. It’s part of our culture to minimize the bad stuff in life.”

She suggests sending an email to loved ones explaining how you feel and how you would like to be treated. Consider saying, It’s not important what you say. It’s what you say next. “It’s the discussion that makes a difference in how you’re going to feel afterward,” she says.

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SteveDB's picture
Replies 4
Last reply 2/15/2018 - 6:58pm

Good evening all.

I'd told myself a long time ago that I'd come back each year, and post an update on my present state.

Looking in my history, my last post was 2 years ago. So, please pardon my laxness.

I am a 30+ year MM survivor. I've had 6 surgeries, 4 years of chemo, and it's now been 14 years since my last recurrence.

Here's my last post-

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

In case you'd not heard of it (Radical Remission Project), here's my bio on the Radical Remission Project page.

https://radicalremission.com/profile/rrjfsurvivor31/

I want to do this because I remember how scary it is to go through this, with little to no support. I am living again. I've returned to my former profession-- something I was told would never happen. As such, I'd left for 20 years. And in all honesty, I only returned because I couldn't find any other work. And furthermore, I never thought I could handle the work load, due to its strenuous nature.

Don't give up hope. My initial onset was summer 1987. It's now 2018. Hang in there!

Best Regards/wishes to all.

One heartbeat at a time.

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TexMelanomex's picture
Replies 7
Last reply 2/16/2018 - 6:33pm
Replies by: Coragirl, TexMelanomex, Bubbles, Anonymous, BillB

Hey Warriors! 

I just returned from Houston and round 7 of Pembro. Its looking like a surgery will happen early next month to clean out all the wreckage left behind by the PV-10 injections near my left clavicle. Apparently since the doses/volumes were so high with the PV-10 my body is having a hard time clearing out all of the remaining tumor (and it was big to start with). I was told today that I am classifed as a "complete responder" to the PV-10 so that's pretty cool.

I never thought I'd say this, but Im looking forward to the surgery! After months of bandages and PV-10 purple leakage from the injection site....I will once again be able to wear a white shirt! Plus, to me, this is the finishing blow to a tumor that signals a victory on the battlefield. Now, getting these last two tumors wiped out will be cause for a real victory celebration...I'm working on it.

Taking the Pembro alone is proving to be much easier than the combination therapy and side effects are almost nil on the last two rounds.

I hope you are all fighting hard and perhaps more important than fighting hard all the time, staying in the fight! 

Tex

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Tracyyy's picture
Replies 4
Last reply 2/17/2018 - 11:10am
Replies by: Tracyyy, CindyJ, Bubbles

Hi all,
My mum had positive lymph nodes in groin and had them removed on 12/12/2017. 6 of them were removed and 3 were positive for melanoma. She recovered from surgery and had PET/CT scan yesterday in order to plan further treatment. Today we got the results and one pelvic node lit up. It had quite high SUV uptake like 22. Trying to be positive and good thing is she is still stage 3 C. Before PET scan we were had a plan to go with local radiation and Nivo adjuvant but this node messed up our plans and I am getting overwhelmed. Tommorow we are going to see what our onc will suggest. I was hoping so much that the scan would be clear. Now I am trying to put myself together and be strong for my mum and help her go ahead with decisions. Thank you all for being there! Needed to share my feelings...

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smyers5015's picture
Replies 1
Last reply 2/13/2018 - 5:26pm
Replies by: ed williams

Hi all,

I have a question but let me give a little background first.  I was diagnosed in March of 2017 with an 8.5x4 cm tumor on my left adrenal gland and 3 small nodes from 2mm to 8.5mm on my right lower lung lobe.  I started Ipi/Nivo combo in May and lasted all 4 treatments and am now on Nivo maintenance.  I had a CT in August and the nodules on the lung were stable but the tumor on the adrnal gland had reduced to a little over 4 x 3 cm.  I had another follow up on Feb. 1 and there was still no change in the lung nodules and little movement on the adrenal tumor, now 3.5 x 2.5 cm.  As these were all CT scans we don't fully know whether these are dead remnants or just in remission.  I requested a referral to a radiation specialist to do targeted radiation, hopefull to kill what's left while still doing the Nivo maintenance.  My first meeting is this Thursday but I don't know alot of what to ask, specifically what is the best type of radiation to use, side effects, number of treatments, etc.  I do still have side effects from the Ipi/Nivo treatments of severe fatigue, muscle and joint soreness, rash on arms and calf's which are mostly relieved through prednisone.  I guess really I'm looking for the right questions to ask and what to expect with these treatments?  Thanks in advance!

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/15/2018 - 8:21pm

Hello.. I’m about 14 months out from a WLE of a thin 1A.   My 1A was a moon-shaped ugly duckling mole. 

My scar is messed up due to the stitches seperating from lifting too much and then it got infected so the skin n is pretty wrinkled and marble’y.  

My question - I’m getting something that looks like a pimple at the bottom of the scar (and I don’t often get zits on my bicep).    I see the derm soon and I’m not overly concerned but now I am wondering what would a recurrance look like?  Another mole, a lump or a pimple?   

Any thoughts?

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mjanssentx's picture
Replies 5
Last reply 2/14/2018 - 9:08am
Replies by: Newmanbell, TexMelanomex, Anonymous, Gene_S

Fellow warriors...this is the note that I sent to my team...we have come a very long way in 3.5 years. I know we have lost many among along the way...but hope is a good thing.  (and for those that remember my name...I think I was among the very last folks to do the full 1 year treatment of Interferon...and survived)

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

Team – it has been almost 3.5 years since my diagnosis of Melanoma Stage 3A.  The bad news is that Stage 3A patients have a 30-35% chance of becoming a Stage 4 patient.  (and there is no Stage 5)

At the time of my diagnosis, if you went to Stage 4, you were essential dead man walking with a life expectancy of 5-8 months.  So I dreaded the PET scans that occurred every 3 months (and now every 6 months).  Three years ago this time, I was walking into the doctor visit knowing there was a 1 in 3 chance that I was NOT going to make it to July 4th….(and those 5-8 months would have been filled with desperate surgeries and radiation treatments…so your quality of life was immediately reduced.)

So 3 years later when I walked into the office today, I know I am down to about 1 in 8 chances of going to Stage 4.  (odds get better over time)  I have continued to get good news and today was no exception.

But the really great news applies to your friends and family as well.  You probably have heard about these new miracle Immunotherapy drugs that have hit the market in the past 2-3 years.  They are game changers in the cancer game for sure.  And the Melanoma patients are leading the way in the testing and seeing results. Stage 4 is no longer a 100% death sentence.  In fact, in speaking with doctor today….he is suggesting that about 60% of Stage 4 patients are alive 3-4 years out (they don’t really know all the stats given the newness of the drugs). 

Why is that great news for all of us….the Immunotherapy drugs first tested with Melanoma patients are being applied to many other cancer treatments.  I don’t want to sound to overly optimistic….these drug treatments can have some very nasty side effects and they don’t work for everybody.  These doctors are still learning but that is a heck of a change in the outlook of this here-to-fore deadly disease in just 3 years.  (and I am sure many of us have lost loved ones to cancer)

From certain death…to hope.

A good way to start the week.  Feeling good and you should to…  Michel

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Dreaf01's picture
Replies 1
Last reply 2/12/2018 - 9:34am
Replies by: Anonymous

Hi All, 

I am in need of some advice. In Dec. of 2016 I was diagnosed with stage 1b 1.5mm non ulcerated melanoma on my right outer thigh. Slnb was negative and margins were clear after wale. Around Christmas this past year I noticed a hard lump/bump on the right side of the back of my neck when I bend my neck to the left. It’s not painful at all. I moved to a different city after my surgery so I am now being followed by a regular dermatologist every 3 months (he said 6 months would be sufficient, but my anxiety forced every 3 month visits). I haven’t had a cold or cough. Going to see my pcp tomorrow to have her look at it. If she doesn’t think anything of it should I see someone else? I know it’s far fetched to have melanoma skip groin nodes and go to the neck, but I am still nervous. Any advice? Thank you warriors! Prayers for all.

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phammond53's picture
Replies 4
Last reply 2/11/2018 - 8:15pm

First diagnosed with Melanoma in 2015.  I had an ulcerated mole on my left outer thigh.   This was removec and a SNB was performed.  No nodal involvement.  In April 2017 a reoccurrence on my left thigh was diagnosed.   Upon further investigation it was determined that one node in my groin was affected.  Surgery removed the nodual on my left thigh and major groin dissection was performed (removed all nodes in my groin and abdomen).  I was placed on Interferon as a treatment protocol.   November 2017 I was diagnosed with Melanoma in my lungs and lymph nodes behind my lungs and another tumour on my left leg. (Stage 4).   I am now being treated with Keytruda and scans every three months.  The volume of cancer is low.

The first Doctor who diagnosed was very grim and stated that the “average” person with my condition goes 8 to 24 months before progressing.   (This was not my regular doctor)   Upon seeing my regular doctor she was far more hopeful and stated that they have many people doing well on Keytruda past the 4 year mark   She indicated that with low volume of cancer in the lungs I should respond well.   

I’m trying to make sense of these conflicting outlooks.   I want to plan and make decisions but find it hard     I’m off work, should I go back?  Try to do some bucket list items while I’m healthy?   How long before my health deteriorates?    Is my Doctor sugar coating my outlook?

Any advice, or even some perspective from this forum would be most welcome    Sorry for the long post  

 

 

 

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