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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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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Bob B.'s picture
Replies 3
Last reply 2/15/2017 - 6:03am
Replies by: _Paul_, Charlie S, Anonymous

Several years ago I received melanoma (also basal cell) excision surgeries at Moores Cancer Center.   Previous to that I received several other melanoma excision surgeries.  All told, I’ve had 6 surgeries for melanoma.  

As we know, melanoma may return to a different location at any time.   One occurrence is usually followed by more.

(1)  Is aggressive melanoma considered a “chronic condition” for purposes of State or Federal Insurance coverage (MediCal, MediCare, etc)?                   

(2)   If so, how long between the appearance of new, non-recurring melanoma tumors does Melanoma continue to be defined as a “chronic condition”?

Thank you for your help.

Best wishes,

Robert James Beadle

The Only Good Legend is a Dead Legend.

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45_dps's picture
Replies 3
Last reply 2/15/2017 - 10:26am
Replies by: cancersnewnormal, Hukill, Anonymous

On January 17th I filed a disability claim with my employer (major health technology company) based on my diagnosis of stage 3b melanoma.

I wasn't planning to take disability until my surgery for lymph node removals in my neck (and surrounding tissue where positive-testing nodes were embedded).

I completed all the paperwork and my oncologist completed their portion of the paperwork. Then I asked what else needed to be done to get an approval. The insurance company said that no approvals are given in advance because schedules change (2nd opinions, surgery scheduled, etc). However they said that as soon as I was admitted to the hospital they would be approving my claim automatically.

On Feb 9th (Thursday) I had my surgery and was in the hospital til Feb 13th (I put in sick days for Feb 9th and 10th just to be safe). On Feb 13th I called the insurance company (they hadn't called or emailed me, and my work accounts still listed me as active rather than on leave). I was told that on Feb 10th they had called the hospital (it's a major health system in Southern California) and were disconnected while in the phone tree. No other actions had been taken on their part (they didn't call the hospital back and didn't pursue any other avenues for verification, and didn't contact me or my wife).

I'm furious and want to hire a lawyer just because I can't believe how little they have done in nearly a month! It seems like I have no recourse except to accept the very little they are doing to move this claim forward. As of yesterday I am absent without leave from my employer because I didn't put in for sick time, yet I am out of the office without an approved disability claim. My boss knows all about the situation and tells me not to worry about it, but I don't understand how they can accept such poor follow through from their disability insurance company.

i also opened a claim for social security disability yesterday because I just don't know what else to do.

-No progress on my employer's disability claim

-My employer's disability claim has been worded by them to be specific to the surgery and not to my diagnosis of Melanoma. (So I'm worried they are going to say I'm approved for only 2 weeks of leave to recover from surgery and no coverage for my subsequent physical therapy of shoulder and speech, and immune therapy).

-Social Security Disability has a compassionate allowance for metastatic melanoma, so hopefully it gets approved easily and I can feel comfortable that I am on some disability plan (even though it will pay less than 25% of my previous salary vs. the 55% which my employer's disability insurance policy would pay).

I'll just finish this note off by saying that I hope this is all in my head and that everyone working on my claim has the best intentions but just limited resources to move things forward.

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vycki727's picture
Replies 5
Last reply 2/15/2017 - 8:58am
Replies by: vycki727, UBContributor, Anonymous

I have just returned from my first specialist appointment, after being diagnosed with T1a melanoma in my thigh - 0.8mm, no mitosis, no ulceration, clark level II-III, regression present. 

I have alredy done the WLE, and the results from that were clear - no more cancer found.  Given the state of my tumor, plus the fact that I am pregnant, we did not do an SNLB. 

With the oncologist today, I had an ultrasound of my lymph nodes in my groin.  Everything was going fine, till the oncologist found a misshapen one.  It is still small, not swollen or enlarged, but also not a normal oval - instead, it is thinner on both edges, and thicker in the middle (like a snake swallowed a mouse type of thing).

When I asked if he thought this was because of the melanoma, he said "no".  Still, he said that we should watch it and I will go back in one month to have another ultrasound of it.

I was too firghtened and didn't have the foresight to ask him - if it isn't malignant, what could be causing it?? Isn't it most likely malignant??

I know the odds of a T1a tumor like mine spreading are low, but it is still a possibility.  I am seriously scared, and wondering if anyone has any idea what this could mean - have you had misshapen nodes that came back clear for cancer?  Is this a thing that happens?

The internet has pratically no information on misshapen nodes, just swollen or hardened ones, so curious if you all have any insights.

Thank you in advance for your experiences/thoughts!


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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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Aloha14's picture
Replies 5
Last reply 2/14/2017 - 1:54am

I wonder if it's necessary to wear compression pants/shorts since I still have the seromas on my upper leg? I'm planning on wearing my bicycle shorts anyways tomorrow since I wouldn't want them to get larger again. Does anyone know if it's necessary to wear compression clothing forever once you've had lymph nodes removed?

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JustJaren's picture
Replies 7
Last reply 2/14/2017 - 11:40am
Replies by: Anonymous, brendon, UBContributor, Aloha14, Toby0987, jennunicorn

Still awaiting my appointment with an Emory specialist for a 2nd opinion, but everyone I talk to says they WILL reco a groin dissection for my 4 cancer cells in the subcapsular region of the SLN.

I am PETRIFIED of lymphadema as I am an avid bicyclist/hiker/love to work in the yard. 

Can anyoine tell me if they have lymphedema and have gone on to enjoy biking and hiking?

I am boggled on what to do. WIth my original lesion being .86 with an 'ocassional cell' giving it a mitotic rate of 1 and a clark level 4, I am still not convinced that a groin dissection is the answer, considering the risk of life altering complications.

 

 

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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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Christine.P's picture
Replies 1
Last reply 2/13/2017 - 6:43pm
Replies by: debwray

Hey, everyone. I am wondering if others have experiences ptosis (drooping eyelid) with headaches while on ipi/nivo or nivo alone. I am stage 4 and was able to complete 3 of 4 doses of ipi/nivo (the last of which was in September 2016). I have been on nivo for over a year. (Long stroy re: why my ipi/nivo combo was done halfway into my first year of treatment; I'll spare you that here.)

For the last couple of months I've noticed that my left eyelid is quite droopy but didn't really think anything of it. I just attributed it to being a 53-year-old woman until my oncologist noticed it at my last treatment. An MRI of the brain was clear (whew!) but now I will be seeing a neuro-oncologist on the 21st. Am I safe to assume no brain mets since the MRI was clear? 

I have always been prone to headached (including migraines with and without aura), so I hadn't thought much of the recent headaches either. I'm curious if they can be connected to the ptosis. 

I know I will eventually get answers, but like most of us, I like to know as much as I can before I go into the neuro appointment - if only to be able to ask intelligent questions. I have tried searching for ptosis as a side effect of nivo, etc. but can't find much. 

Has anyone else experienced anything similar? If so, what caused yours? What did they do to treat it (if anything)? Any shared experience or advice is welcome. 

Thank you. 

Christine P. 

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Anyone have lengthened benefit of 1 week ON, 3 weeks OFF, 4 weeks ON dabrafenib/trametinib?

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45_dps's picture
Replies 1
Last reply 2/13/2017 - 6:01pm
Replies by: casagrayson

Thank you all for your posts. There are a lot of lurkers here (like me) who are constantly searching for more information, and your posts help us to learn (e.g. I've started taking vitamin D and probiotics in advance of my upcoming Ipi infusions, and my wife knows what to watch out for in terms of bad potential side effects).

Last Thursday I had a complete lymph node dissection of the left side of my neck (and "2/3" of a particular neck muscle taken out as well) just got home from the hospital today. Results will come in by the end of this week and at least one node will be positive because it was previously tested positive following a partial excision of that particular node in January.

Now I'm just trying to heal as much as possible, in advance of the Ipi therapy.

-Dan (IIIb)

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laulamb's picture
Replies 6
Last reply 2/16/2017 - 4:31am
Replies by: Anonymous, youngann, laulamb, jennunicorn, UBContributor

No abnormal focal nonphysiologic FDG uptake seen to suggest mestastic disease.

YAY!!  Thanks for everyone's good thoughts and prayers.

There was nothing on the PET scan report that discussed the 4 mm lung nodule.  So I am guessing it was still 4 mm and not able to be seen by the PET Scan or it was gone.  Does anyone have an insight on this? 

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jennunicorn's picture
Replies 12
Last reply 2/15/2017 - 5:52pm

So, my primary care doc had me do some regular blood tests last week, one of which was Vitamin D level. I have been curious since my melanoma madness began over a year ago what my level was, but was one of those things I kept forgetting to ask my onc to test for me.

Well, it's super low at 13. Not really surprised that it is low, but was hoping for a little better of a number. My doc wants me to start on a prescription Vitamin D 2 at 50000 iU. I sent a message to my onc to make sure that will be ok to take while on treatment before I start it. My primary wants me to take it for 2 months then retest me and I guess go from there.

Has anyone else been on a prescription Vit D before? I didn't even know it was a thing until now.

Of course having read (on awesome Celeste's blog) that low Vit D levels in mel patients is associated with poorer outcomes.. I want my levels wayyy up! I guess my orange juice w/ vit D and almond milk w/ vit D just isn't doin it. On top of this my cholesterol tests were a little high.... ugh, can't I just eat cheeseburgers, drink wine, and not exercise without having my cholesterol affected?? No? Dang it! Time to dust off the treadmill..

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Cathy M's picture
Replies 22
Last reply 2/16/2017 - 4:55am

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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Hey,

First time posting, although I've been reading the forum for years.

My wife is Stage IV - primary site in thigh, now with multiple brain mets - all of which as have been zapped with SRS.

She had 8 months of PFS with Tafinlar/Mekinist but that's over. Tomorrow she starts Keytruda, and will transition off Taf/Mek.

Our onco is being a bit vague about the efficacy of Keytruda with brain mets, esepcially given the previous Taf/Mek treatment. Same question regarding side effects.

Anyone have experience and/or knowledge?

Thanks,

Steven

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