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.

Expand/ Collapse Topic
 
Replies By
View Topic
Coach337's picture
Replies 10
Last reply 4/18/2017 - 1:43pm

Diagnosed with IIIc Melanoma in November of 2015. 

 

Following several surgeries, the first treatment plan was Yervoy.  This wound up being scrapped as the first infusion came with a little bonus - an eight week bout of colitis that would knock my socks off multiple times each day.

 

Plan B was T-vec.  Received injections for three months with minimal side effects.  However, my first set of full scans showed that this treatment wasn't really accomplishing much - other than pissing the cancer off as it continued to grow and spread.

 

Third time's the charm.  I'm now approaching my sixth month of Keytruda infusions.  After the third month scans, I'm miraculously NED.  However, I'm not sure if it's a blessing or a curse.  There are a few of the regularly associated side-effects (fatigue, joint pain, headaches, muscle aches, feeling cold) but those are gladly acceptable considering I'm alive and kicking.

 

Here's the problem:  I've developed periodic crushing chest pain.  The frequency (several days in a row to once or twice a week), intensity (from 2-12 on a scale of 1-10), and duration (30 minutes to 24 hours) is always random.  When these episodes hit, I am powerless and completely shut down (in addition to being paralyzed by pain and anxiety).  I've had every cardiac and gastric test imaginable and check out fine.  The doctors can't really tell me what's going on.  I'm not sure if this is the Keytruda, a combinaton of the three types of treatments I've had, or something else alltogether.  It concerns me, because what should be the excitement of being declared NED is completely overshadowed by these episodes.  February and March have been extremely rough, and I often find myself wondering if I should be rooting for the cancer (or even speeding up the process myself) because there's no way I want to continue this.  Not just from a selfish standpoint either - it pains me to see what this is doing to my family and relatives.   Just curious if anyone has had a similar experience?

 

Login or register to post replies.

mrspink's picture
Replies 7
Last reply 4/18/2017 - 1:40pm

My dad had two seperate craniotomy's in the last month. His last one being about 2.5 weeks ago. 

They tapered him off his brain swelling meds and then last Sunday he started acting very strange, not really responding to my mom, speaking some gibberish, and becoming aggresive. 

They did a follow up CAT scan that looked good so they started him back up on the swelling medication but said it could be days to level out. 

It's been 4 days. His speech and ability to talk are worse then it was before surgery, he's wandering off and becoming aggresive toward my mom when she stops him, and we just keep being told to wait it out. 

His current neursurgeon is on spring break. I don't feel like my mom is being agressive enough to get him in to someone else. 

I guess I'm asking if this is normal?? Is this his new normal?? Should I step in and try to get him into someone or is it really just a wait it out and see thing. 

I'm concerned my mom wont be able to handle this much longer. 

 

*trying to get all the names of the meds from my mom now. 

 

Login or register to post replies.

Good afternoon, everyone.

Mary Mendoza at MRF encouraged me to post our studies on this page.

We are again fielding a study for which we are hoping to interview 25 people who have been diagnosed, and are currently treating advanced Melanoma (stage 3 III or IV)

These one-hour interviews will take place at your convenience, at any time during the next three or four weeks.  We are pleased to offer to you an honorarium of $100, as a thank-you for taking part in the interview.  I promise that this is not a sales presentation, of any sort--strictly opinion research.

If you would like to participate, please call me, as soon as possible, so that we can set up an interview with you.  My direct number is 212.289.0087, or you can send an email, if you prefer, at pfcresearch@verizon.net.

Thank you, and warm regards,

David Leonard

Director of Research

PFC Opinion Research

New York, NY

Login or register to post replies.

AVeryHopelessPerson's picture
Replies 2
Last reply 4/18/2017 - 11:09am
Replies by: Hukill, Anonymous

So I had my boyfriend get a melanoma specialist that he sees twice a week (or so) and looks at his test results. (He gets X-rays) he started on Immunotherapy and will get another dose in a week and Will be X-rayed the day after the immunotherapy. As far as we both know, the cancer hasn't spread yet but it didn't change size. (It didn't get smaller) I believe he had some lymph nodes removed when he got surgery (around the end of February) he has been in the hospital since the end of February. However my hope is slowly decaying because I keep getting thoughts about him dying. I can't stop crying while we both don't talk. I'm very afraid about what will happen next because there's no cure to melanoma and I read so many patient stories about it. 

Login or register to post replies.

DocPain's picture
Replies 11
Last reply 4/18/2017 - 8:53am

I know that everyone responds differently to opdivo/yervoy, but how long did the side effects last for you? I would think less than three weeks given the first nfusion cycle, but that's a bit unnerving to think 12+ weeks of constant side effects for four rounds. Did the side effects abate any when you went single agent?

Doc Pain

Login or register to post replies.

Henry 1990's picture
Replies 11
Last reply 4/18/2017 - 8:50am

Photos of the current situation are below, as well as what has happened, and most importantly, a few questions. And I have scheduled a digital dermoscopy for 24 April. (As I am writing this, it is April 16.)

In December, 2016, I somewhat scratched my upper stomach and there was something and when took a closer look I found an oval mole that, as it seemed, I had cut in with my finger nails at the lower side as a result of the scratch.

I didn’t think if the mole was there before or not, but later I started to realize that, hey, this mole definitely wasn’t there a few years ago, and maybe even a few months ago. All-in-all, I didn’t suspect anything dangerous at that point.

Then, at the end of February in 2017 or maybe somewhere in March, I somewhat found a dark-brown stripe at the lower side of that oval mole. It kind of was like broken and I was able to remove most of the dark pigment with toothstick and the toothstick tip got covered with dark-brown color too (so it was not  entirely solid). It was at that point when I suspected that it might be something bad but not necessarily and I removed the dark stuff and left it to heal.

As I remember, after a week, I didn’t notice the dark stripe and it was evenly colored but it was little more reddish perhaps. But now, in this month, somewhere in the first week of April, I noticed a new dark spot in that mole at that side.

By looking closer to that new darker spot inside the mole, I notice that it is not oval. At a closer look it appears as irregular shape, almost as scaled shape of x or +.  The diameter of the mole itself is 3mm at the longer axis and 2mm at the shorter axis. Based on touch and light reflections it is not entirely flat (as checked today). It is slightly elevated, particularly at the darker side and not necessarily at the lighter area.

The two pictures below show how it looked the first time I took a picture of the mole on April 10, 2017: 

[img]http://i.imgur.com/UdzbSSi.jpg[/img]

[img]http://i.imgur.com/boVMvWe.jpg[/img]

 

And here another three pictures show how it looks a week later, today, on April 16 (it has gotten little darker, and I’m worried that it has gotten slightly elevated as well):

[img]http://i.imgur.com/oKRXiZv.jpg[/img]

[img]http://i.imgur.com/mglwpNo.jpg[/img]

[img]http://i.imgur.com/eHUMLS8.jpg[/img]

 

I have tried to find similar cases by searching in Google, and I found one case study that seems to be sharing similarities with this one (Case 11, or case K - thickness 0.60 mm):

http://jamanetwork.com/journals/jamadermatology/fullarticle/209659

 

Now, based on what I have said, and in case that it might be fastly growing nodular melanoma, should I wait the 7 days ‘til I get checked by dermatologist who is specialized checking moles with digital dermoscope, etc., or try to get it removed faster by general board certificated local surgeon? (I’m afraid that local surgeon might not see the seriousness of that and not cut it out properly (I live in Tallinn in Estonia and I’m not sure how “punch biopsy” is in translation to Estonian language either), and maybe they’re not going to send it to proper or specialized biopsy or not sending it fast enough – and when it has been cut out that it then cannot be evaluated with digital dermotoscopy as it has been cut out, etc.)

My second question is that, should I go to the hospital where digital dermoscopy is performed and try to get an earlier appintment than on April 24 – which is 7 days from now? (When I went there on past Friday they first offered me appointment in July, and then I expressed that I suspect melanoma and I got appointment for April 24, which is 7 days from now as I am writing this.) Assuming it could be vertically growing melanoma, should I go there and try to get examined faster – and if so, what specifically I should tell?

And my final question, how quickly a fast-growing melanoma, starting from 0.5 mm thickness and about 3 mm in diamater could possibly grow internally in 7 days in a relatively healthy person? 

Could I slow it down by eating more C-vitamin, like a lot of red pepper in addition to war borccoli? I just started to take vitamin D3 as well as in Estonian winter is without sunshine and I haven’t gotten much Vitamin D since the last summer I guess.

Login or register to post replies.

Supportivefiance's picture
Replies 12
Last reply 4/18/2017 - 8:28am

So... Life has been a wild ride. My fiancee (26) and I got engaged last July. Date is set for July 22nd. We end up losing our beautiful Golden Doodle tragically a few weeks after our engagement. After having 3 Drs. refuse to biopsy her mole, I finally pushed her into getting it removed. Well... you know the story. She was diagnosed Ib 0.9mm breslow, clark IV, miotic 6, nonulcerated, Superficial spreading... Margins clear on original and I believe on the WLE as well. We were told she was clear nodes, but path called back and claimed they found 4 microscopic cells. (she was a little vague on this and I haven't seen the whole report). Onc. Surgeon said that she would be a soft 3a diagnosis. They took 2 nodes and I believe the SLN was the one with the melanoma cells. The surgeon is recommending against CLND as she has only seen 1/71 patients ever have other positive nodes. Right now I think we are leaning that way. I really want her to get on yervoy and anything else you can do at this point in 3a. Her labs have looked good, but she has not had a PET scan. She will meet with the Melanoma specialist sometime next week. She lives and works at Mayo in Rochester, so I know that she is at a good place. If anyone could offer advice or encouragement it would be helpful. Thank you all so much. I hope you all the best in your treatment! 

Login or register to post replies.

Replies by: Mat

With all of the advances in immunotherapy (which is amazing!) I'm wondering why there aren't tests to prove a systemic response to immunotherapy.

i wouldn't want to injected dead melanoma (if that is even possible). But it seems like there would be a test of some sort to show that our immune system is attacking melanoma cells or is not attacking them. For unresectable patients the evidence is obvious but for us resected patients it would be nice to definitively know if we are durable responders.

Login or register to post replies.

matthew111's picture
Replies 2
Last reply 4/17/2017 - 1:21pm
Replies by: jennunicorn, Anonymous

I am 26 and had a mole check about  in june 2015 and the derm looked at the moles with a dermatoscope and said they were all fine, since then they have not grown larger, but I recently had a appt with a new derm to look at a mole on my arm that was hurting when I went out in the sun and who who did a mole check and and wanted to remove 2 different small, flat moles, but wanted me to come back and do it at another appt. and didn't want to remove the one on my arm that was bothering me. He also only looked at them with a magnifiying glass and not a dermatoscope. I am wondering if he just wants to remove them to make money. They also asked me if I had a family history of melanoma and I said I thought my dad had it, but it turns out he didn't. Part of the problem is one of the moles they want to remove is on my ankle, above the sural nerve which is just half a millimeter below the skin. I know this because I had orthopedic ankle surgery before. They also told me a nurse would give the numbing shot not the doctor, I am very nervous that the needle will hit the nerve and give me nerve damage.

The moles they want to remove dont even look suspicious apart from being dark, one on ankle is 2mm tall 2.5mm wide, one one back is  5mm tall by 4mm wide and the one on my arm that actually bothers me is 8mm in all directions. They are all mostly flat. I get alot of anxiety from going to the doctor becasue I was harmed by a negligent doctor before  and will be sick with worry and insomnia at the thought of getting them removed especially the one on my ankle and the though of nerve damage, espically because I already have pain walking due to joint problems.

I will upload pics of moles

ankle http://imgur.com/ajgO3oV

back http://imgur.com/z8t2bXF

arm http://imgur.com/TxJhJu0

I have a couple questions

1. I know melanoma can affect people of any age, but dosen't it affect mostly older people?

2. Does nodular melanoma mean the mole is raised?

3. If a mole is near a nerve should I go to a derm or plastic surgeon to have it removed?

4. Do you think my moles (especially ankle) are suspicious?

5. Do you think the new derm wants to remove the for money only?

Login or register to post replies.

jennunicorn's picture
Replies 24
Last reply 4/17/2017 - 8:47am

Does anyone have a great sunscreen they use every day that doesn't feel like they are wearing sunscreen? It feels like a neverending search for the right one. I have sport ones for when I am more active and don't care if I feel like I am wearing sunscreen. And I have face moisturizer with sunscreen in it that I like. But, finding that one for the whole body for just regular every day use seems difficult. I also hate the smell of most sunscreens. My derm recommended EltaMD sunscreens.. they are kind of expensive, not too bad, but before I go buying some, if anyone has tried it, do you like it for every day?

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

Login or register to post replies.

PFritz's picture
Replies 6
Last reply 4/17/2017 - 8:44am

I truly truly hate the feel of all sunscreens, lotions, moisturizers so it really stinks that they now need to be in my everyday life! Does anyone have good recommendations for sunscreen, moisturizers/lotions with SPF (for days when not in sun much like work days), and makeup? Also any recommendations where the products don't have "bad/cancer causing" ingredients? I know Zinc products are recommended does anyone have experience with products with zinc that don't make you look like Casper? Thanks!

Login or register to post replies.

Bobman's picture
Replies 4
Last reply 4/16/2017 - 10:28pm

And the waters  are filled with shark's  to quickly  rubber  stamp  a big "No".

Since my last post , I  have  been  navigating  the system  to get to UCSF, and to their  credit ,  the university  has been helping  me quite  a bit . They now have all the needed pathology , scans, and referrals  on me , and have been working  hard to help me get there .  I was supposed  to be there this Tuesday , the 18th. But after my insurance  denied  my appeal  to the original  denial,   my appointment  has been canceled .  I'm   still arguing  my case with the medical  director  who denied  me coverage .  His reasoning  was "You have an oncologist , and dermatologist  here."

Of course  no one here is a melanoma  specialist , and I've  been around  this board long enough  now to know what I   need, not to mention  no one here knows  what to do with me at this point. So, UCSF has rescheduled  me for May 9th. They're  still  hoping  it gets resolved  by then,  as do I  . But even if  I  get denied  yet again , I  am  making the trip. My thinking  is get my foot in the door asap,and get eyes  on me that will know what to do .  I refuse  to let some shirt who doesn't  know anything about me,  and is trying pinch pennies  stop me from getting  where I need  to go. 

I swear , navigating  the system  is as frustrating  as the disease  sometimes .

Open to any suggestions  how to push this along ,but come hell or high water, I'll be at UCSF  on May 9th.

 

Aloha  to all in fight ! 

Bob

We are one.

Login or register to post replies.

mom3girlsFL's picture
Replies 4
Last reply 4/16/2017 - 12:34pm
Replies by: UBContributor, Scooby123, Anonymous, Jamie1960

Hey all,

Just had another round of clean scans (CT chest and abdomen pelvis) which puts me at NED for 1 1/2 years while on Taf/Mek combo!  Had immediate response after recurring in lung and perinoteal nodes.

My question is...could mel "skip" the nodes and move to brain? I'm  only asking because for the past month or so I've  been experiencing light headedness, dizzy spells and being off balance. Cognitively I  feel fine.

Of course I  will share my concerns with onc, and I'm  sure he will order mri. Just wanted some opinions.

Thanks, as always, and keep up the fight!

Laurie

Do not fear tomorrow, God is already there.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 13
Last reply 4/16/2017 - 12:08pm

Just out of curiousity, how many of us are MDA patients? I live in Texas but travel about 4 hours to get there if driving (or 30 minutes by air) but I know people come from all over the country (and world). Each time I'm there I meet really interesting and positive people so I was wondering how many of you go there?

Tex

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 4/16/2017 - 11:52am
Replies by: Anonymous, Spl25, MichelleRHG, Jamie1960

I am confirmed Stage 3a and I am currently NED. A possible trial offers HDI/IPI or Pembro. My oncologist hold me because I won't take HDI I disqualify myself. However the oncologist administering trial is not saying the same thing. 

I am taking this weekend to decide next steps. Ethically I struggle with possibly proceeding when there is a drug that should I be selected would refuse. 

I am interested in others thoughts

Login or register to post replies.

Pages