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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Replies by: Fen, 45_dps, Anonymous

8 days since complete lymph node dissection of the left side of my neck.

Normal scar and muscle tightness (and no sensation in my left ear, cheek, neck, and shoulder).

My speech is having a strong lisp.

It is very difficult to move food around in my mouth (mostly moving food from left to right is the challenge, and if it gets stuck at the top of my mouth then I can only get it with my finger). 

When I try to smile, and/or lift the sides of my mouth up, only my right side goes up (left side stays horizontal)

Has anyone experienced these? Could you let me know how you overcame them?

Any recommendations regarding medications, vitamins, or herbal medicines which can help nerves to heal?

My surgeon is getting me help from a speech therapist, so I've got that going on. But I'm definitely interested in the experience of others in this regard.

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casagrayson's picture
Replies 8
Last reply 2/18/2017 - 3:22pm

I just wanted to let everyone know that I did a little Facebook stalking (sorry, Joshie!) and Josh is currently at MD Anderson getting TIL treatment.  His pictures look like he's handling it well!

Let's keep the cheerleading going.  Hopefully after he gets home toward the end of the month he'll swing by and give a real update.

Strength and Courage,

Susan

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From melanomaforum.org:  The book written in 2015 is available free to all patients and caregivers.  Please send an email to: contact@melanomainternational.org   Limited quantity available.  We also would appreciate any donations to cover labor and postage.  It is the number one book on Amazon.com on melanoma.

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/18/2017 - 7:51am
Replies by: Ed Williams, Bubbles

Was offered a trial involving TVEC combined with an immunotherapy.  I don't know much about TVEC.  And that side of the trial is blinded, so not sure it's worth it anyway.  I can also do the immunotherapy drug without TVEC, so it's not an all-in type situation.  Has anyone had early success with it?  Or anything similar?  I'm really not sure what to do.

Thanks!

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Anonymous's picture
Anonymous
Replies 8
Last reply 2/17/2017 - 11:00pm

I've recently had a recurrence of melanoma in three nodes (groin, pelvis, knee).  Other than the three nodes, everything else looks fine.  I had interferon in 2007, and had previously been in remission since 2012.  All of my previous melanomas have come on the same side of my body, from my groin down.  

I'm trying to decide what course of action to take next.  I'm being offered pembro, but want to know if this is the best, next step.  Doctors are confident it can be effective with the least side effects.  I'm BRAF positive as well.  I would appreciate any thoughts or advice.  I know there isn't any perfect option, but I'm asking what would make most sense for this stage?  Thanks, and best to all of you.  

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Anonymous's picture
Replies 5
Last reply 2/17/2017 - 6:18pm
Replies by: SOLE, debwray, Janner

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

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AvaL's picture
Replies 2
Last reply 2/17/2017 - 3:17pm
Replies by: AvaL, jennunicorn

Hi, I know my hubby prob needs to get this looked at but I just wondered if others had had an itchy scar some months after the WLE. Hubby stage 3a and had WLE in November. He's not felt much around the area apart from yesterday when it became  itchy suddenly. I can't see anything at though around it, no colouration, no new bump etc. Anyone else had similar? God I hate this! X

 

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CindyCo's picture
Replies 4
Last reply 2/17/2017 - 2:36pm
Replies by: debwray, CindyCo, _Paul_

My mom had her first dose of Keytruda last Wednesday (Feb. 8) after 5 doses of radiation (which ended Jan. 27), with mostly fatigue and nausea as side effects so far. The primary anal mass has noticeably shrank since she started radiation, but there are ten or so new little white bumps all over the anal opening (they look like canker sores).  This morning, there are some new ones underneath an external hemorrhoid.

I sent a picture to her oncologist and he thought it looked like melanoma from the picture. The white bumps make it painful and stings when she urinates or tries to put ointment on it. Has anyone else experienced this, and did it turn out to be melanoma?  Is it possible for the primary to get smaller while there is progression elsewhere?

I always thought that melanoma wasn't painful, which is why I was hoping it was radiation breakage.  Also, the outbreak happened pretty suddenly and quickly (we see that area every day, so we would have seen them if they existed all along.  I know that it may take a while for immunotherapies to kick in, but these new developments make us pretty anxious.

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Gibsongirl's picture
Replies 13
Last reply 2/16/2017 - 11:21pm

Hello everyone, I'm a 37yo female who developed a small black shiny mole a few months ago. It was very tiny but was not a mole that changed, just popped up. I really just knew when I saw it. (I'm a midwife and have been in health care as a nurse for years).

They did a shave biopsy, which in hindsight I realize wasn't the best course of action on Monday the 6th. I just knew it was melanoma but the shave was pretty deep and I figured it would be gone. I was surprised when later that evening I took the band aid off and there was the same thing, same size in the same spot. I panicked knowing this can't be good. I got the call today 9 days later that yes it is mm. It was just shy of 2mm in the biopsy and obviously there is more still in my thigh. I'm scheduled for Tuesday the 21st for I guess what is a wide excision. They said they'd be taking a large area down to the muscle and I'd have multiple internal and external stitches.

The report said mm in situ. I ask her how they could determine that when I still have some in my leg. She didn't know and the surgeon is on vacay and won't be back until Monday but without WE they can't grade it? They won't be doing any lymph node tests until the lab results come back and say it is needed, but from what I have read it should be done at the same time?

If anyone has any advice and possibly if I should run to a different practice (I have national insurance that is good thankfully). I'm a mom to a 6yo special needs daughter and I need to make sure I'm doing everything right. I'm beside myself. I'd feel better if it weren't so deep. Someone with more knowledge please help, and be honest. Thank you in advance.

GG

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Shelby - MRF's picture
Replies 1
Last reply 2/16/2017 - 8:49pm
Replies by: Charlie S

Dear MPIP Community:

A media outlet is seeking individuals for a potential interview opportunity ASAP. If you are a former tanner who used a tanning bed in your own home and would like to share your story, please email media@melanoma.org. Thank you!

Shelby - MRF 

 

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Shaneswife's picture
Replies 4
Last reply 2/16/2017 - 8:41pm

Sigh. You ever notice that all we do with cancer as a care giver is wait. Wait for appointments. Wait for tests. And wait for results and then repeat over and over. I'm so darned worried about Shane's results. We get them Tuesday and my gut tells me his liver and bones and lungs will be better, but not in the brain. The brain will show progression. And if you can't control the cranial disease then what. I suspect he's in for another round of whole brain radiation before they switch him to immunotherapy. I don't even know if the combo is approved in Canada doublet. Anyone know for sure? I'm talking ipi/nivo. They will have to take him off the braf/mek if there is progressiono in the brain. He's highly symptomatic with neurological symptoms when not on 12mg of Decadron a day. Sorry for my vent. I'm just so tired of waiting.

Janis

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Hi, here's an update on my husband Steven. Mets in brain, and body. WBRT in January. He was tapered off decadron  and was taking nothing anymore on Tuesday and Nivo/Ipi started 2 days later. He already was extremely tired after radiation, but tapering off and the infusion all together made him even more exhausted, on Friday, he could hardly do anything and was having a fever. After talking to oncologist I brought him to ER, but nothing really explained the fever and they said it was too early for auto-immune side-effects. MRI was also done, but no real explanation, one big tumor had shrinked they said, other were still there and seemed to have some edema, but they wanted to wait with steroids to soo how it developed, so we went home again with some steroids ' just in case'.... On Satuday he got realy lethargic and confused and bad balance so I called again and ended up in the ER again en they decided to start on steroids  by IV, as a tablet at home did not have effect. So now on Monday we are home again, and the IV's with steroids really brought him back. However, it also stopped the immune cells working....so immunotherapy is not doing the work right now. We are going to taper him off in the next weeks, but I'm so nervous that he will get oedema again. Whenever he seems little more confused I get nervous. He then also is difficult to talk to and does not raelise what is going on. Today he's really clear and has insight on how bad he felt this weekend and remembered how weird he reacted to me. But it's very hard dealing with that and I even had to get angry to get him in he car to the ER, he was SO lethargic ! .....sigh.... Any experiences, insigts, helpful comments are welcome

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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Charlie S's picture
Replies 5
Last reply 2/16/2017 - 1:37pm

Somebody, somwhere once said or wrote something that stuck with me about the adversity when your inner mettle is tested with a private storm  and how to deal with it:

Have a wishbone

Have a backbone

Have a funny bone

It sooooooooooooooo applies here I think as we all deal with the obvious.

Good tools methinks.

Just thinking out loud.

 

Cheers,

Charlie S

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adriana cooper's picture
Replies 5
Last reply 2/16/2017 - 11:51am

I found this the other day during my research on WBRT.

Long-term stabilization of leptomeningeal disease with whole-brain radiation therapy in a patient with metastatic melanoma treated with vemurafenib: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880202/

 

Adriana got to come home yesterday and has been managing pain relatively well. Day 4 of lumbar and WBRT coming up. Boy that mask doesn't look fun but only about three minutes of treatment duration. The worst part was making it and targeting which took considerable time. She wished she had accepted the drugs in hindsight. She is awesome always with a smile on her face even though she has to put up with me. 

Need to get a new bed for her and new chair as ours are not comfortable for her. Occupational therapy discussed the potential for a hospital bed at home but she was discharged before they could arrange it. 

Any info on hospital bed rentals and specifically Medicare/Medicaid coverage would be appreciated.

 

Rob

 

Adriana

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NSNewf's picture
Replies 11
Last reply 2/16/2017 - 11:20am
Replies by: NSNewf, slouttit, Mark_DC, debwray, jennunicorn, Anonymous

I am currently waiting for a date for an L5A neck dissection. I met the oncologist yesterday and my treatment option is HDI or nothing. (I am Canadian). IPI and Pembro are only available at Stage 4. There is a possibility of a trial HDI or IPI or Pembro.

Assuming I don't upstage from 3a following dissection and the trial is not an option what is the feeling about HDI given the results from Sunbelt Trial that doing HDI does not have the prognosis any better by doing observation? Btw sitting at home not working while on HDI would drive me crazy 

 Thanks for any feedback. Sorry to hear you are going through this. 

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