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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Joycem's picture
Replies 8
Last reply 4/27/2017 - 12:16pm
Replies by: KatieB, coltbnme, Joycem, Anonymous

At my skin check today (9 month follow up to removal of deep nodular amelanotic lesion) my derm recommended the Castle Decision Dx test be done on my biopsy specimen in storage.  I agreed since she said it was no cost to me but forgot to ask when to expect to hear results. 

Just wondering what prompted them to start recommending now. Guess I should have asked that too. I saw some older posts here that sounded skeptical and link to Celeste's blog post. Kind of feels uncomfortable to be thinking about percentages and likelihoods of recurrence or spreading as at this point as I had those thoughts tucked away for now.

Possibly just the results of marketing millions being spent?

https://melanomanewstoday.com/2015/07/31/castle-biosciences-receives-funding-decisiondx-melanoma-test/

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/27/2017 - 12:25pm

I had a WLE in upper mid back last week.  7 disolving internal stitches and 9 on the surface.  The 9 stitches will be cut out in 4 weeks time.

I have been on a weight loss program for the last few months, through a mixture of cardio and clean eating.   It's been pretty successful, helped my self esteem, and I am keen to keep up the momentum.  I have already entered and paid for a cycling event in Italy in 50 days time.  So being sedentry is driving me crazy!

I went for a 3 mile walk this AM (day 4), and felt OK.  The stitches do feel tight, but not too painful.  But I am unsure how much to push it.  I realise that bike rides would be the last thing I should be doing, as reaching forward would be foolish - but think I would be OK doing increasing amount cardio that isolate my lower body (e.g. step machine, upright stationary bike and maybe gentle jogging in a week or two etc).

I guess I am more wary of when the stitches are taken out in 4 weeks.  Would butterfly stitches help to lessen chances of scar splitting open as I increase activity.  Could I ride a bike in 4 weeks time?

Is it just a case of increasing a little day by day and seeing what works and what doesn't?

Does anyone have any tips for increasing the rate of healing WLE?  Supplements?  Diets?            

 

 

 

Rags

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MovingOn's picture
Replies 7
Last reply 4/25/2017 - 12:20pm

I've completed 3 Ipi infusions (10mg/kg). Most recent infusion on 4/18. Headache started very mildly on 4/13. 4/18 Lab results still show that pituitary function is in the normal range (but lower than past labs). Thyroid output is below the expected range for the first time.

Headache got worse on Thurs/Fri/Sat/Sun. Consulted with Oncologist and went to Urgent Care today (Sunday). Urgent Care consulted with my Oncologist and did a brain CT scan (without contrast). CT result was "normal" but they said it showed buildup in my sinus resulting in a sinus headache. I've never had a sinus headache before in my life, so I hope they are right (rather than this being hypophisitis). Previously in the approval process for a Brain MRI and still planning to get it as soon as my insurance approves it (approval by Tuesday and MRI will then be scheduled for Thurs/Fri or Mon).

Prescribed Hydrocodone and over-the-counter Flonase. Hoping that Flonase results in some output from my nasal passages because I sure don't feel like anything is in them. Maybe this is an allergic reaction headache to the wild flowers in CA this time of year but I haven't experienced this before.

 

Stage 3. Diagnosed Jan 2017 via excisional biopsy (no known primary)

Surgery Feb 2017. Ipi/Yervoy started Mar 2017.

I'm not out of the woods, but I'm always moving on.

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debwray's picture
Replies 21
Last reply 4/28/2017 - 10:37am

Hi, 

Liver numbers elevated dose 2 of combo. Rechallenged for dose 3 , 23/ Jan resulted in more elevated AST and ALT.

Scans show diseae in Liver , Spine , Pelvis , lung Sacrum and breastbone, Had two shots at radiation which helped but was supporting myself with two hands on washbasisn last weekend heard a crack and fell to the floor.Couldnt get up again andbruising is extensive tho told no fracture.

Have been passed to palliative teams and feel so low as every grab rail, or profiling bed offer tells me things are going to get worse...

I'm 55 and have so much I want to fight for but prior pd1 seems to exclude for so many things.Am being treated in Manchester ...at a specialist centre.Am loving stories of successs with Ipi Nivo, could just do with some for me too.

Anyone know if it is worth trying pembro after nivo ? given different routes....

BTW have..2-3 groin lymph nodes accessible for biopsy easily. Am currently on 4 tabs of dex to help  but could taper if appropriate.. Help please as I don't want this to be the end of the road....

Deb

 

 

 

 

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Willowcaregiver's picture
Replies 7
Last reply 4/27/2017 - 10:03pm

My husband has had 10 lesions in his brain the first 5 were treated sucessfully with SRS Radiation, as were the 2 in the second set. Recently (March 29, 2017) 3 more lesions were found in his brain 4 days later he began loosing balance and motor skills. Upon addmission to hospital on April 3 out was discovered line of the mets was bleeding. He had surgery and 5 days of physical rehab and came home 13 days after being admitted. 36 hours after returning home he had a horrible seizure and was taken back to hospital where out was discovered there was an additional met that had been bleeding in a different address of brain. He underwent a second surgery and in now home doing well. He also has a met to a lung node and a tumor in the tail of the pancreas. Has anyone had 2 bleeds on the brain? Does anyone know what they about the tumor on his pancreads??

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KatieB's picture
Replies 5
Last reply 4/25/2017 - 12:49pm
Replies by: KatieB, Anonymous, Jamie1960, Janner

Recently diagnosed, 1A, I probably have 50 moles and I'd say 20 of them or so are irregular.

Ive probably had another 20 removed in my life and the scars to me, are minor and less noticeable than the moles.

So I'm inclined to take the 20 irregular ones off - has anyone done that? Taken off moles as a preventive measure?

I'm hoping my doctor will agree - it seems safer to me and like it will help me sleep better. 

 

Thanks for any advice,

 

katie

 

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DocPain's picture
Replies 6
Last reply 4/23/2017 - 3:37pm

I know that everyone reacts differently and that everyone's general health at the outset is different but I thought I would ask this nonetheless.

i have had one infusion of yervoy/opdivo with "mild" side effects (although three days of nausea felt anything but mild while going through it). Infusion #2 is in about 10 days. Is there a general rule-of-thumb about the severity and nature of side effects at that time? More of the same? Same kind, more severe? Same kind, less severe? Completely different set?

Any thoughts would be greatly appreciated. I'm trying to anticipate work coverage and needs.

Doc Pain

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adriana cooper's picture
Replies 7
Last reply 4/22/2017 - 8:49pm

she stood up at PT today (with lots of help)

her strength and will amazes me.

Happy Birthday, I love you.

Rob

Adriana

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snow white's picture
Replies 8
Last reply 4/26/2017 - 6:44pm

Hi All,

Well the IPI sent Dads liver into a tantrum.  His numbers just kept climbing.  He went to his Doc. appt on Monday and she said "we are admitting you", what?  He had driven himself there. We got the call, Mom packed up and we headed out.  We had to go through the Emergency to get him admitted, 7 hours later he had his room.  They were giving him steroid and Celcept to get the numbers down, unfortunatley the Celcept backfired and made it worse.  So they pulled the Celcept, gave more steroid and another drug (can't rememebr the name) and guess what?  His number are coming down!!  They also did a biopsy on the liver, wont get results until Monday.

But the best news is that he had a CT scan and it was CLEAR!!!!!!  No Cancer!  Our doc called me and is thrilled and shocked.  He will get an MRI next month to check the brain, but for now we are thrilled.  He comes home tomorrow!!

Just wanted to share some good news.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Maria C's picture
Replies 7
Last reply 4/25/2017 - 2:47pm

Dear Fellow Warriors:

I lost my password and email to these boards so haven't posted for awhile, but I think of all of you so often and always want to share my news (good or bad) with family first, then you guys second!

So today I am sharing that 2 months away from my 2-year mark on this horrendous melanoma roller coaster ride, I am happy to say my husband and I finally feel stable enough to schedule our fall anniversary trip to Paris!

This after a plague of severe side effects from ipi/nivo during the 4-combos of my first year, 5 brain mets that resulted in 2 gamma knifes, 2 craniotomies back-to-back last summer (June 16 & July 19), and a 5-day partial brain cyberknife following the operations. Will updated. Legacy contemplated. The 5 stages of grief knocked off at least twice.

All this, and MY SCANS ARE CLEAR!!

My news after a week of MRI/CT results: No New Anything :-)

Paris, here we come.

New and seasoned warriors, hang in there. There is Hope, and then some!

P.S. I am not an easy patient. I ask questions. I research. I ask more questions. I get second opinions. And I rely on these boards a great deal for research, community, and anectodal guidance. Thank you MRF & all of you for being there (here). :-)

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JJ1970's picture
Replies 3
Last reply 4/22/2017 - 3:59pm

Hello all, I received the following report from my dermatologist, who is recommending a further excision of an atypical mole, and am having a hard time deciphering what it means in plain english.  Is it melanoma?  Is it just atypical and could, if not further treated, turn into melanoma?  I'd appreciate any help from those of you with more knowledge. Thanks in advance.  

 

"A disorganized junctional proliferation of melanocytes in both a nested and lentiginous growth pattern is present with junctional nest architectural variation and moderate random cytologic atypia. There is no significant migration of melanocytes into higher epidermal levels. Papillary dermal fibroplasia, melanin incontinence and inflammation are seen. Aggregates of banal-appearing melanocytes are present within the dermis. The atypical melanocytes extend to a peripheral margin and thus re-excision is recommended."

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cmbstarr's picture
Replies 7
Last reply 4/22/2017 - 6:42pm

Hi everyone. Just wanted to share my story so far with melanoma. I noticed a spot on my shoulder in about 2005. After mentioning it many times to my dr. And being told it was nothing it started changing more rapidly in 2013. At which point Dr still said it was nothing and saw no point to refer me to dermatologist. By 2014 I had met my out of pocket max for insurance and although my dr. Said the spot was still nothing she agreed to refer me to dermatologist (even though he will not understand why she sent me). As soon as dermatologist walked in he said it looked like melanoma and called in his colleague to confirm. They immediately did a punch biopsy with a most likely I would be back diagnosis. Sure enough in a few days I was called back in to talk with them. It was melanoma and a removal was scheduled. Resulting in a 5 inch scar down my shoulder. I was told it was just under the cut off depth for lymph node testing and proceeded with routine skin checks as only follow up. In January 2017 my armpit near the original site started to fill strange. By February I noticed a hard lymph node and went to my dr. (I had changed primary dr.s at this point) he said we could just wait and see but when I mentioned the melanoma I had previously had (he had forgotten?) He said we could still wait or do a surgical biopsy. I chose biopsy. It came back positive for melanoma. Now I have stage 3 and an oncologist. I meet with a different dr. On Monday to schedule a complete right axillary lymph node removal then either immunotherapy or a clinical trial. Haven't decided which yet. So I'm finding out how much I have to be my own advocate. I know the dr.s I have had are good and defiantly mean well but if I hadn't continued to push I hate to think of where I would have been at this point.

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/23/2017 - 12:08am
Replies by: Elana, Scooby123, Anonymous, momof4boys

Just wondering if other women who are on immunotherapy like pembro or ipi/nivo have noticed their menstrual cycle symptoms being a lot worse than they were prior to treatment. I used to get fatigued and headaches for the first two days of my period, nothing major, typical monthly stuff. But now, for the first few days of my period while on treatment I am so incredibly fatigued that I can hardly do anything, have to take off work, and I get bad migraines. Feels like what were normal symptoms are 10x worse now. Like going through this isn't hard enough, now I have to expect to feel 10x worse than normal at least once a month! Anyway, had to vent about it, and maybe see if I am not alone in this.

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

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MaPerny's picture
Replies 16
Last reply 4/27/2017 - 9:54am

Yesterday, I lost my soulmate, Juan, and my son lost his Papa.  After 4 years fighting this awful disease, he reached the end of the line.

The pain is raw and recovering from both losing him after 30 years of marriage and the toll of being a caregiver for such a long period will not be easy. But it was my pleasure to care for him over these years through multiple surgeries, radiation, chemotherapy, immunotherapy and TIL.   If I made it a little less painful and easier for him to cope with in any small way then my job was done.

I would like to thank everyone for the advice and encouragement.  I see so much hope for the future with new treatments and progress every day, just too late for us.

good luck and god bless

Maria

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/21/2017 - 10:34am
Replies by: Anonymous, jennunicorn

Hi! Just call me Kath. I have a mole at my upper back. It appeared when I was 28 years old. About 10 years ago. Before it was red. And now its already black. It is itchy and painful when touched. Can anyone tell me if this is melanoma. Thanks.

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