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.

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The tumors in my leg only seem to be branching off instead of shrinking. I started Yervoy in August and then when my tumors grew they decided to put me on Opdivo as well. Given all that, the pet scan from a few weeks ago shows that all my tumors just grew with more spots since my pet scan in December. I'm just wanting to know the point in immunotherapy treatment where we should be calling it quits because while my dr does think it might be slowing the grow down I seriously doubt it's going to cure me at this rate. So there is is about seven months since my first yervoy injection (obviously I ended that because they don't keep you on it for that long) and six months since my first opdivo infusion (still ongoing) and nothing but tumor growth. 

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Ridingaroundwith27Jennifers's picture
Replies 2
Last reply 2/24/2018 - 7:42pm

Hi All,

Overall things are going OK at the moment.  No new tumors.  Brain looks OK.  We are still watching the surgery site.  There is something going on but the Drs can't tell if it is normal healing, radiation injury or tumor regrowth so at this point we just wait.  Still on nivo every two weeks.  CT-scan is Tuesday to check remaining tumors on adrenal glad and liver.

So here's the confession part.  I'm supposed to be taking lovenox twice a day because of the initial stroke.  The oncologists think the stroke was due to hypercoagulated state from the melanoma.  Since my blood is clotting normally I most likely don't need the lovenox.  The injection sites were so sore I just couldn't bare them anymore.  I stopped taking about a year after the initial stroke.  I told the Drs about this and they are all very supportive but won't sing-off on me not having the blood thinner without the vascular neurologist's approval.  So I've got that appointment coming up at the end of March.  

Here's the other thing.  I'm supposed to be taking 750mg of Keppra daily for seizures.  The 500mg dose was managable however I don't feel very well on the 750mg dose so I've not been taking it.  I mentioned that I'd like to go down to the 500mg dose but they haven't made a decision yet.  I've been off it for 3 months with no seizures and thought that maybe I was doing OK and then yesterday - seizure.  I should tell you that these are very minor seizures.  I don't lose consciousnesss.  It's just uncomfortable and of course I get nervous and take the meds.  

I know I should be doing everything they say to the letter (that's my normal mode of operation and my comfort zone) but I want to be normal again.  I want to do the things I used to do and not be tied to all these meds.  I had started back at work last July and got a promotion.  I want to stay working and do my job effectively.  The keppra makes me feel like my brain is numb.  I can't think.  I can't exactly work and think when I'm having seizures either.  Not to mention it isn't safe to drive.  I need to drive to get to work so then I need to be on the meds.  Where is the balance?  I can't seem to find my new normal.  I thought the hard part was behind me.  Looks like I'm wrong, again.

Any tips on staying on blood thinners or anti-seizure meds?  I've hit that point where I'm med averse, and procedure averse.  The thought of Tuesday's scan has me tied in knots.

Thanks,

Jennifer

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jrtufo's picture
Replies 3
Last reply 2/24/2018 - 2:12pm
Replies by: jrtufo, Bubbles, lindanat

Stopping Keytruda-symptoms mimicing Sogren's syndrome.  Rocks growing in salivary glands and severe dry eye.  Treating with steriods.  Anyone else have this issue?  How long before steroids eliminated symptoms?  Did you go back on Keytruda?

JulieT

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gopher38's picture
Replies 11
Last reply 2/25/2018 - 3:26pm

Hello all,

First post (wish under better circumstances).  Diagnosed recently with IIIc.  Malgnant cancer on back and lymph nodes.  All removed and NED PET scan, but I've already read enough to know there are little nastys cirulating in my body looking for a place to land.  Was asked if I wanted to participate in yervoy + opdivo clinical trial, otherwise they said I'd just get opdivo.  I originally told them no.   I'd done some readiing, and it sounds like this ipi drug can produce some heavy side-effects, including long-term.  Then I thought: hey, long-term negative side effects are better than the alternative.  Also, just got the feeling from several doctors that, although they were officially trying to stay neutral, that they thought it was worth it.  So I changed to yes (still depending on some tests). Plus, I may not get the combo anyway (blind test).  Just wondering what people think about clinical trials.  Good for humanity, you, both, neither?

Scary stuff, all in all, but it does sound like there's progress being made.  Probably would have been better to get this 10 years from now, but better than 10 years earlier (not that anyone asked).  Ciao.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/24/2018 - 1:30pm
Replies by: Anonymous, Mohnish

Hello all, i was diagnosed in stage 4 in may 2017, on keytruda had 10 infusion, which i have too arrange fund on my own as i am Indian there is no clinical trial available in india. Please suggest any alternate or clinical trials for indian resident any information will be supportive.

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Aregowe's picture
Replies 3
Last reply 2/23/2018 - 2:25pm
Replies by: Janner, Aregowe

Hello all, new here. Wife was just diagnosed yesterday. The sheet she got from the Dr says:

Malignant melanoma, Breslows depth: 0.55 (at least), Clark's level: 3 (at least).

Primary tumor: pT1a (<1.0mm - without ulcer and < 1 mitoses/mm2).

Fluorescence in situ hybridization / molecular results abnormal.

Not sure what all of that means. But on the 1st they're going to cut deeper into her foot, in a football shape they said, around where they had initially cut.

Anyone able to explain what any of this means? I'm kind of freaking out because this sounds terrifying.

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MelanomaMike's picture
Replies 8
Last reply 2/24/2018 - 9:52am

Hello Family, long see no time! {no im not dislexic lol} I hope everyone here is "stable" at the least, like i am, "stable" for the most part, as some of you already know me {im fairly new here & do not write much} iv been fighting Melanoma since my 1st diagnosis back in 2008 {stage 3b} with 6 surgeries so far {1 on average every 2yrs or less all inwich where in left leg {Primary} including  Lympnode groin area} ya know the drill alotta of you's, , do a surgery move on, another bug pops up, dig it out, move on....Last year in June around the time of surgery #6, a CT revealed "1" tumor in each lung, surgery was offered, i didnt jump on it right away, i "slept" on it for about a month, called the surgeon back to say lets do it, he said fine, ordered "another" CT Scan huh, the tumors have doubled in size {right was like 2.4cm, left was like 1.2cm plus a few more sprouted in each lung as well,  like "MM" in size {forget actual sizes} so, surgery was cancled, Did lung biopsy, confirmed Melanoma, Immunal Therapy was brought up & i jumped on the Pembrolizumab band wagon {Keytruda} on November 22nd {2017} i believe, and today i have had 5 infusions so far and just had my first CT scan to check its progress, results was bitter sweet, some tumors disapeared, some shrank, some did nothing at all, some got bigger & i "concieved  "2 new"  little baby ones!, so ya, bitter sweet. Plan B if my next 2 infusions do not show progress, we will start Opdivo & Yervoy as a combo. Somethings gotta work, my "Key" or "Solution" is out there & im ready for whatevers to come. My Thyroid acted up after infusion #4, T4 was low, my TSH was 45.31{way high apparently} so, Oncologist alowed a short break inbetween #4 and #5 bags of Pembro......

     So, as i do for you, pray for me {the ones that do anyways}, were gunna need it cuz some Melanoma bugs are VERY strong & relentless, evasive & cunning & we have a few of those bastards in us. Warrior On, and keep yer Boots on cuz it's on like Vietnam...I love you guys, ill try and write more...yer pal, Mike..

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Toby0987's picture
Replies 2
Last reply 2/23/2018 - 8:09pm

Well had my 5 year appt since being stage 3b in 2013. After a tense day of waiting for PET (had to get poked 5 times for them to get a vein) and blood test results-Dr  Markovic came in and gave me my 5 year coin and congratulated me for being 5 years NED and no more need for appointments. It was awesome-brought me to tears-had my 6 year old with me and when I came out of the appt room the staff was lined up and gave me a standing ovation as I walked out. My daughter was so excited -she thought it was because of my birthday. Thanks to all of you on this forum. I valued all of the information you provided-it was great to have a crew to bounce ideas off of. I truly believe that having this community was just as important as having a great melanoma medical team. Thanks again-I will check in from time to time. It is good to have some winning on here!

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/23/2018 - 2:29pm
Replies by: Anonymous, Janner, ed williams

Hi,

 

I received a pathology report below and not sure what it means.  I have been scheduled to have a wider section removed based on this report.  I need help understanding the report.

 

FINAL
MICROSCOPIC
DIAGNOSIS: A. Right pretibia, Shave Biopsy:"" SEVERELY
ATYPICAL
INTRAEPIDERMAL
MELANOCYTIC
PROLIFERATION
W ITH DENSE
HOST RESPONSE;
EXTENDING TO
ONE PERIPHERAL
MARGIN."" "" Comment:
Although the
findings are not
sufficient to
render a
definitive
diagnosis of
melanoma in
situ, the lesion is
significantly
atypical. Initial
and multiple
deeper sections
were examined. A
MART-1
immunostain
(with appropriate
controls)
highlights
melanocyte
distribution and
supports the
above diagnosis. Sections show a
proliferation of
atypical
melanocytes at
the
dermoepidermal
junction, with
areas of
confluence.

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bjeans's picture
Replies 2
Last reply 2/22/2018 - 4:53pm
Replies by: bjeans, ed williams

My husband is scheduled for an SLNB and wide local excision 3/2/18. A 9.3 mm mole had been removed from his chest. We were referred to a melanoma/skin cancer center. They immediately ordered a full body PET-CT (clear!), and we met with the doctors on his team: oncologist, surgeon and dermatologist/director (Venna). Apparently the oncologist keeps up with the literature/conferences/peer consulting/etc., and may tend to be more on the aggressive end of the spectrum when it comes to treatment. So far so good. 

I've noticed some people here who have had PET-CTs also had brain MRIs. Is that the norm and would you have thought my husband would have had one? In case it matters, no symptoms.

Thank you! You all are beyond helpful as I muddle through, reading (including Bubbles' primer and many posts),

Beth

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/22/2018 - 8:48pm
Replies by: Anonymous, Jamie1960

Hey guys, I’m 29 and live in qld Australia, both my parents are born in the uk but I was born in Sydney . ever since I was a youn I always remember having a lot of moles particularly on my stomach, back, and neck. it’s been something that has always made me depressed and embarassed, I have over 100 moles/brown spots on my back and constantly finding new ones, I find the more I stress about them the more they come out and I find new ones. I never take my shirt off let alone let people see me without one, I have severe depression because of this, I no it sounds silly but it really brings me down, I feel so ugly because of it, im just wondering if anyone else has this and if so can we chat? 

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Replies by: Bubbles

Hi All.

I'm looking for some information for a relative that has been diagnosed with the above.  A brief history is as follows:

 

1. 34 year old female, 3 Years ago diagnosed with Melanoma Stage 1, and had this removed. No further complications or checks done.

2. January 2018 - Had trouble breathing, sent for a scan and diagnosed with Melanoma Stage 4 on her lung.

3. Doctors told her she could start a free trial of Nivolumab if she waited till March.

4. She had back pain for a while, but it was manageable and thought to just be Sciatica.  2 days ago pain became unbearable.  MRI returned that she has Leptomeningeal Thickening of the spine.

5. She has been put on dabrafenib and trametinib, but told she cant now go on the free trial of Nivolumab.  She is prepared to pay for it but her doctors are saying that the Leptomeningeal Thickening must shrink before she can have Nivolumab.  So they hope the dabrafenib and trametinib will accomplish this in 4 weeks.

6. Once shrunk, she will stop taking Trametinib, but stay on the Dabrafenib along with Nivolumab + Ipilimumab

Does this sound correct?  Should she start Nivolumab immediately or wait like her doctors have suggested?

Any other treatments, experimental or otherwise anyone would recommend?

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Raco's picture
Replies 7
Last reply 2/24/2018 - 8:16am

I did a first post but picked Anonymous by mistake so I have reposted.

Hi, Really would appreciate some feed back:

I was diagnosed with melanoma on my left flank on January 25th, T1a Stage II

5 days later I was in the Surgeons office and he discussed that we  Remove the Melanoma 2mm and to  do a SLNB to determine if the cancer had reached the lymph nodes.

On February 5th, Surgery. SLNB was removed than the Melanoma.

Results in two days.                                                                                                                                    Melanoma site was all clear around the Margins,  However, they found Microscopic cancer cells in two lymph nodes that they removed. N1a Stage III

Next,,,, 9 days later I met with Dr Alberico Oncologist, Virginia Oncology. He has me scheduled for two test.

1. Brain MRI

and

2. Pet Scan to see if I light up anywhere.

If All is clear, I will go back to Surgery on March 12th and they want to remove additional nodes and place a drainage in.

Kinda just looking for others that may have experienced similar situations and Whats the word about having your lymph nodes removed.

Thanks for your input.

Robbie

_____________________________________________________________________________________Re: New to Melanoma and Surgery ktode10910 - (2/21/2018 - 12:38pm)

HI Robbie,

I think that all sounds exactly correct for treatment from where you are and out.  Those were all the same tests I had for my original Stage III.  LIkely, they will recommend a treatment course as well.  I had many lymp nodes removed with my original diagnosis (mine has now recurred ten years later back to my lymph system) so if they can take them--take them!  I did well with that surgery.  It did leave me with lymphadema in my left leg (as my original melanoma was in my left groin) so I do have swelling in that leg that can be managed by a stocking when needed but really isn't anything that affects my daily life.  My drain did get infected with my first surgery all those years ago, but maybe they are better now.  It was a simple cellulitis that was easily treated. 

I hope that helps and best of luck--it sounds like your oncologist is right on track for exactly what I've seen before and would be recommended.  Just don't be surprosed if they add in a medicinal treatment option as well.

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/22/2018 - 8:41am
Replies by: Janner, Anonymous, marls210

Hi my daughter has just been diagnosed early febuary with a Clark level 3 melanoma of superficial spreading type after having a shave biopsy. We have been able to get her an appointment for the 9th of march at the PA hospital. The histopatholgy report says that it requires complete and wide excision of the lesion. I am concerned because the mole is on her spine where her bra clips up, and she is skinny.

Want to know what we should ask, what other tests may be involved, any advice really

 

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JuTMSY4's picture
Replies 12
Last reply 2/23/2018 - 11:22pm

After what's been a great almost 2 years NED/NEAD, last week, my scan revealed a small metastatic tumor on my adrenal gland.  An MRI seemed to confirm that earlier this week.  I was wondering if anyone (probably Bubbles to start) has any information on acquired resistance.  Here's my short history:
 

December 2014 - Dxed Stage 4 - tumors in bones, possibly liver (reclassified as fatty sparing), distant lymph nodes.  

January- April 2015 - Ipi.  Eliminated bone pain.

April 2015 - Began Keytruda treatment

December 2015 - NEAD (spots on liver still on CT, but eventually reclassified to fatty sparing).  

October 2016- Stopped Keytruda

October 2017 - clear scan

February 2018 - PET showed sub 2 cm spot on right adrenal gland.  

So, there's a lot of factors there which make me an interesting case again.  I know adrenal tumors don't tend to cause any problems initially, but I do feel pretty good.  I had very limited adverse reactions to ipi and keytruda.  I'm also waiting for a call from my doc to discuss the next steps (in concrete terms), but that our previous discussion was surgery and restarting treatment.  Does anyone else have any other information or experiences to draw from?

Thanks again.  This place is always an amazing resource.  

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