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
MelanomaMike's picture
Replies 1
Last reply 2/23/2018 - 1:00am
Replies by: sister of patient

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..

Login or register to post replies.

Toby0987's picture
Replies 1
Last reply 2/22/2018 - 11:52pm
Replies by: sister of patient

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!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

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.

Login or register to post replies.

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

Login or register to post replies.

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? 

Login or register to post replies.

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?

Login or register to post replies.

Raco's picture
Replies 1
Last reply 2/22/2018 - 3:30pm
Replies by: Bradley75

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.

Login or register to post replies.

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

 

Login or register to post replies.

JuTMSY4's picture
Replies 11
Last reply 2/22/2018 - 2:35pm

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.  

Login or register to post replies.

tedtell1's picture
Replies 4
Last reply 2/22/2018 - 9:11am

Folks, here is my path report. FYI, a PET scan and Brain MRI were all clear, I guess my question is, do I really need to go through a year with NIVO every two weeks since the cancer hasn't spread, or even the surgery for that matter? 

Thoughts?

 

NOTE)
Surgical Final Report
Patient Name: TELLMAN, THEODORE R
Accession #:S18-4295
Taken: 1/31/2018
Received: 1/31/2018
Reported: 2/7/2018
Physician(s): DEVI K CHETTIAR

Final Pathologic Diagnosis
Skin, left upper back, excision:
1. Dermal melanoma
2. Tumor extends to a peripheral margin and to within 0.1 mm of
the deep margin
3. See comment
Comments
The lesion is centered deeply in the dermis and the findings are most
supportive of metastatic melanoma. Correlation with clinical findings
and imaging studies is recommended. Dr. Warren Goodman has seen this
case and agrees with the interpretation. Devi Chettiar, PA was
notified via telephone conversation on 2/6/18 at 3 pm.
*Electronically Signed Out By*
Katherine E. Brick, MD
Procedures/Addenda
Clinical History
Cyst
Gross Description
The specimen is received in formalin and labeled with the patient's
name and "left upper back". The speci
men consists of a 2 x 1.3 x 1.2
cm portion of tan-yellow fibrofatty tissue with an attached 2 x 0.6 cm
tan-pink skin ellipse. No orientation is provided and the external
surface is inked green. Sectioning reveals firm pale tan centrally
incised cut surfaces throughout and abutting the margin. The specimen
is entirely submitted in six cassettes.
1. Representative sections
2. Ellipse tips
3-6. Remainder of specimen. cl
cll/1/31/2018
Microscopic Description
Histologic sections of skin on six (6) H&E slides from six blocks
are reviewed. There is a dermally based tumor located deep within the
dermis and extending up to the subcutis. There are multiple cohesive
nodules composed of cells with pale cytoplasm, enlarged nuclei,
prominent nucleoli, and abundant mitotic activity. The nodules display
areas of central necrosis and form a mass encompassing the mid to deep
dermis. Immunostains show that these cells are positive for S100,
SOX-10, and Viment
in, and negative for CD34, cytokeratin Oscar,
cytokeratin AE1/AE3, Melan-A, and EMA. The tumor extends to a
peripheral margin and to within 0.1 mm of the deep margin.
keb/2/7/2018
Katherine E. Brick, MD
Regions Hospital
Department of Pathology
640 Jackson Street
St. Paul, MN 55101  

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 2/22/2018 - 7:52am
Replies by: Raco, Bubbles, ktode10910

Hi, Really would appreciate some feed back:

I was diagnosed with melanoma on my left flank on January 25th, 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. 

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

Login or register to post replies.

ktode10910's picture
Replies 6
Last reply 2/22/2018 - 2:01pm

Hello all,

Here is my story in a nutshell.  I am a 35 yo female, first diagnosed with Stage III B melanoma in 2008.  The original site had metastisized to my sentinel lymph node and I had further lymp node removals that were clear. Then they recommended and I did a year of Interferon A--one month via port daily and then three times a week self administered.  Additionally, I had two other new diagnosises of melanoma Stage I that were removed and clear in 2009 and 2011.  

Fast forward to a few weeks ago--I had been having lower back lumbar pain for a while and finally went to see a spine Dr. and he ordered an MRI.  The MRI came back showing numerous, diffuse enlarged lymph nodes in my retroperitineal, pelvis, and lumbar area.  Given my history, my doctor sent me for a PET scan immediately which came back with diffuse long distant involved lymph nodes--from my left leg, through my back near my spine, up into my chest, under my clavicle and into my left armpit.  Biopsies were done and are positive for metastatic melanoma, considered a recurrence of my original Stage III diagnosis ten years ago.  Due to the large lymph involvment, placement, and amount I have been told surgery is not an option.  So far, my major organs are CLEAR (lungs, brain, liver all look fine) and my spine and bones are also ok.  I do have one possible tumor that may have to be removed depending on what a surgeon says, that is near my upper back.  It is unknown how/if that is involved in the lymph node recurrence. 

So based on this, my oncologist is starting me on Keytruda given via port every three weeks.  I am still waiting for my insurance to approve my first treatment, but hopefully it will be in the next week or so.  

So, tell me everything about Keytruda.  My oncologist promies me it will NOT be as bad as the Interferon A--that about killed me. I had every side effect possible when I was on that, including three hospitalizations for complicatoins.  He says people overall do very well and to look for "itis" symptoms (pneumonitis, pancreititis, gastritis, dermatitis, etc). 

So give me the good, bad and ugly about Keytruda.  I know everyone reacts differently, but I had no idea what to expect last time and I really would love to know more this time.  I have a two year old son and husband, which is different from ten years ago and I am hoping I can still function to work and be a mom. 

Thanks :-) 

Login or register to post replies.

Tracyyy's picture
Replies 3
Last reply 2/21/2018 - 11:19am
Replies by: Anonymous, Tracyyy

Hi,

Mum is stage 3 (you can check my profile for more info).

On 12 Feb she had a PET/CT which was all clear except one pelvic node in the area of the inguinal nodes removed in December 2017. After PET scan our onc advised us to make an additional MRI of the pelvis to determine the exact location of the node so the doctors could perform another sugery.

Yesterday we made the MRI and got the results right away. They showed the same pelvic node as the PET scan, but also few more satelite lymph-gland masses in the lymph channels, many insignificantly enlarged pelvic nodes and enlarged superficial inguinal lymph nodes in the other left side of the groin...

So which scan should we trust now? PET/CT showed nothing of the above.

Our docs turned down operation when they saw the MRI and instead suggested BRAF inhibitors if mum is positive /we are having the BRAF testing right away/. After that one of the oncs said mum should start chemo, NOT immunotherapy and I got just mad. I immediately asked what about immunotherapy and she said this is the typical course of action in our country - you have to fail chemo and then try other options. And she told me stop reading bulshit in the Internet. Just cannot believe it.

I suggest none of you were suggested chemo given the new treatment options. And have you had difference in PET/CT and MRI results?

 

 

Login or register to post replies.

tedtell1's picture
Replies 4
Last reply 2/21/2018 - 10:31am
Replies by: tedtell1, ed williams, Anonymous

Hi everybody;

I have been experiencing significant weakness in my legs and dizziness since a few weeks before my diagnosis (so I don't think it is psychosomatic/stress induced). Today is quite a bit worse. Since my scans were clear, anyone else experience anything like this. Also will have surgery on my shoulder in April to clean up the leftovers since margins weren't clear after original tumor removal. Since my scans were clear, will they still do a sentinel node check? Thoughts?

Interested in responses. I am feeling pretty miserable today.

Thanks,

Ted

Login or register to post replies.

Hukill's picture
Replies 10
Last reply 2/21/2018 - 1:48pm

I became NED in August 2017, scan in December 2017 still NED and I had a scan on Friday and STILL NED!!! i still get nivo every other Friday and will continue through August. I have had 5 combo plus 34 maintanance doses. I still have mild side effects but it lets me know my immune system is responding. I have not missed a treatment and still work full time but it is hard some times. I was surprised to learn Friday that the infusion time has been cut from 60 minutes to 30 minutes. I did not feel any different after my infusion. 

Login or register to post replies.

Pages