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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mom3girlsFL's picture
Replies 13
Last reply 6/25/2011 - 12:27am

Hi All,

I am 7 mths NED IIIc metastatic melanoma while on interferon.  Off interferon since (sept?) - don't remember.  I am 44 yrs old and started my menstrual cycle when I was 11.  I  have not had a cycle for 2 mths now. NOT pregnant, several tests done.  Belly feels "full" and big, but I also relaxed a little after my CT 6 mths back which came back clean.  When I say relaxed, I mean a little Ben and Jerry's, a better appetite, and so on.  Nothing (that I feel) too extreme diet wise to cause the fullness.

My mel was in left groin, with recurrance in additional nodes resulting in radical groin dissection.  I did have regular cycles on interferon, before and after surgeries, normal till recently.

My follow up onc appt is Monday which I will, of course, bring this up.  Just throwing this out there if anyone has thoughts, recommendations, questions I should ask...I (think) he will be ordering a PET b/c we talked about doing one every 6 mths for the first year.

Guess I just might be letting my thoughts get the best of me again...

Laurie

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/24/2011 - 8:23pm

So, my husband Dave had a scan on June 14 for a "stuck feeling" in his throat.  His scan came back (I have listed the "final report") as follows:

A mass is seen in the upper paratracheal region.  It's maximum size is approximately 3.6 x 3.4 cm.  This mass is most likely neoplastic lymph node.  A smaller, more cephaled node in the paratracheal region measures approximately 17 mm transversly. The upper lungs that are included here are grossly clear.

He called his oncologist to ask about this, and they immediately set up an appointment to see the thoracic surgeon for a biopsy on Wednesday.  His appt with his regular oncologist was scheduled for 7/8, but he always receives a copy of all of his scan reports in the mail.  When he called they told him it could be anything of the following, in this order: Melanoma, Benign, or Lymphoma. 

My question to all of you is this - has anybody had a lymph node of this size and shape be benign?  And if it is melanoma, where do we go from here?

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Melanoma Mom's picture
Replies 8
Last reply 6/24/2011 - 7:48pm

Josiah got his CT and PET results yesterday and they are looking great! Two lymph nodes in his neck lit up on the CT, but the PET showed nothing. Since Josiah has had chronic post-nasal drip from the Interferon, the Oncs are feeling strongly that the nodes are lighting up b/c of the side effects. He will be scanned again in three months and the nodes will be watched. I am trying not to worry ..... his primary growth was on his rear end so it would be more worrisome if nodes in the groin area lit up vs. so far away from original site. I have also heard from others that they had reactive nodes while on Interferon that turned out to be nothing. We are remaining positive!!

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salliemae's picture
Replies 15
Last reply 6/24/2011 - 10:25am

Hi everyone,

I'm posting for my father-in-law, who has recently diagnosed stage IV melanoma, throughout lungs, on spine, liver, hip, some brain mets.  He's 79 and was very active before the symptoms that eventually led to his diagnosis.  He has had some traditional radiation on his spine and hip and was basically on "hospice-track" with his first, general oncologist.  When we asked about yervoy, that doctor hemmed and hawed and finally got back to us that the practice didn't want to lay out the money for the drug, even though there's Medicare coverage, and BMS told me over the phone that there haven't been Medicare coverage problems that it's aware of. 

So he went to a true specialist in this area. We are very glad that doctor agreed to see him, and quickly. That doctor has decided not to give him Yervoy because it takes 9-12 weeks to work and weighing in side effects given his age and frailty.  If BRAF tests come back positive, that doctor has promised to try to get him in a trial with the V-drug that Genentech is testing, because it works fast.

The family is deciding whether to keep pursuing Yervoy.  After all, his BRAF test may be negative.  And my father-in-law is walking around the house and eating OK.  He was very vigorous until recently.  FOrgive me because I'm getting all this thirdhand, but have y'all ever heard of doctors refusing yervoy because of frailty?  Have y'all also heard or experienced the 9 to 12 week delay?  How much do the side effects really matter with a prognosis like this?

Finally,does anyone know doctors who really are prescribing Yervoy since approval?

Thanks in advance,

Salliemae

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Wally's picture
Replies 1
Last reply 6/24/2011 - 8:58am
Replies by: lhaley

Hi all, Wally from Johannesburg South Africa here. I previously posted in May 2011 and had some very pleasing replies.

I have eventually obtained a Histopathology following upon the resection of the right middle lobe of the right lung. You may recall that about 5 years ago I had a resection of a malignant melanoma in-situ from my right ear. Final Histology report stated up to 1 mitosis / mm2 could be seen. Breslow 0 Clarke Level 1. No ulceration. Solar elastosis of collagen noted in upper part of dermis. Surgical margins free from the lesion with a radical perimeter of 5mm and a vertical perimeter of 8mm.

Macros copy of lung resection:

  1. Medial segment middle lobe – stapled pulmonary wedge resection 40X30X30mm (18 grams), in which there is a fleshy greyish-white tumour, 20mm in diameter as per macro photograph fig 1.
  2. Lateral segment, middle lobe – pulmonary wedge resection 80X30X10mm (14 grams), with an area of HAEMMORHAGE/QUERY HAMEORRHAGIC INFARCTION measuring 30X10mm as per macro photograph fig 2.

Microscopy:

Representative sections of the MEDIAL SEGMENT/MIDDLE LOBE/SPECIMAN 1 shows pulmonary parenchyma in which the presence of a METASTATIC PLEOMORPHIC PIGMENTED EPITHELIOID TUMOUR is present, within an intrapulmonary lymph node.

This tumour has features consistent with those of a METASTATIC MALIGNANT MELANOMA.

Representative sections of LATERAL SEGMENT OF THE MIDDLE LOBE/SPECIMEN 2 show an area of recent pleural intrapulmonary haemorrhage.

There is, within this tissue, desquamated bronchial epithelium, which shows the appearance of a “pseudo tumour”.

Comment:

Appropriate immunohistochemical confirmation of the SUSPECTED METASTATIC MALIGNANT MELANOMA will follow. HMB45/Mel A marker.

ICD-10 Coding                    C34.9

Diagnosis:

SPECIMEN 1, LOBE OF LUNG, MEDIAL SEGMENT:

  1. FEATURE CONSISTENT WITH METASTATICMALIGNANT MELANOMA.
  2. SEE ABOVE COMMENT.

SPECIMAN 2, MIDDLE LOBE, LATERAL SEGMENT:

RECENT INTRAPULMONARY HAEMMORHAGE.  (What does this mean?)

IMMUNOHISTOCHEMISTRY

  1. Mel A (marker for melanocytes – very strongly positive.
  2. HMB45 – marker for melanocytes - very strongly positive.

Comment:

The above immunohistochemical profile supports the morphological diagnosis of a METASTATIC MALIGNANT MELANOMA.

This is all very confusing to me as I have never been exposed to this medical terminology before. I am not sure of how serious my situation is and find no case history on the Bulletin Board similar to mine.

I guess the bottom line is:

Is it evident from the report that all traces of the Melanoma have been removed and all necessary tests done to ensure that no Sentinel Nymph Nodes evidence signs of cancer or have been biopsied (as I have read in previous posts)

How great are the chances of a recurrence somewhere else in my body – can one tell?

The Oncology Radiologist suggested a wait and monitor strategy with a chest X-ray every 3 months and a blood test. Is this sufficient to establish that it is not spreading or should I insist on a PET / CT scan?

No treatment at this stage was recommended (I presume that is unless the follow-up visits evidence a recurrence, I was not told so though.)

I would appreciate any guidelines, input or thoughts please as I remain anxious and need to get perspective as to how to deal with this going forward. I try getting my mind off this but continue finding my mind wrestling with “what ifs” – especially at night when trying to sleep.

The sun shines at the dawn of each new day even though it may not always be visible.

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Lisa13's picture
Replies 1
Last reply 6/24/2011 - 7:54am
Replies by: FormerCaregiver
Many impossible things have been accomplished for those who refuse to quit

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MariaH's picture
Replies 6
Last reply 6/23/2011 - 10:32pm

My husband Dave goes in for a routine set of scans today.  We had a family scare with my 30 year old brother being diagnosed with Stage IV peritoneal carcinomatosis, which sent Dave into a panic mode.  He spoke with his onc and decided to also add a soft tissue of the neck scan, since he's had a feeling of something "stuck" in his throat for sometime.  Just hoping that all come back clear so that he can resume his A+ positive attitude!!

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Vermont_Donna's picture
Replies 3
Last reply 6/23/2011 - 8:05pm
Replies by: boot2aboot, ValinMtl, lhaley

Hi,

Earlier this year (March) during a visit to my fantastic lymphadema specialist for a "checkup" she pointed out that I had lost some muscle mass in my right calf muscle. Hmmm, I had not noticed that. Started working out and my personal trainer gave me some exercises to build the muscles back up (havent seen any improvement yet). Saw my radiation oncologist for a "checkup" and he answered my questions about why was this happening with explaining that this was a side effect of having radiation, not once but twice to my leg (different areas, basically my whole leg has been radiated AND I had a ILP two years ago).

So fast forward to June, my right lower leg looks like a skinny stick compared to my left leg and my compression stocking ($600 out of pocket expense as my insurance plan didnt cover it, and I got it new earlier this winter) is hanging off my leg. I have now gone to the pharmacy and bought a thigh high, 18mm compression, which seems to fit ok, and actually feels better as my compression stocking is the pantyhose type, going halfway down my left leg and full coverage on my right.....its hot and uncomfortable in the summer months, but I have worn them for the last 5 years. Til I can speak with my lymphadema specialist this is what I am wearing.

I also have right foot and right calf neuropathy, ALMOST to the point of not feeling the gas or brake pedal...but not quite, and believe me when that day happens I will get my car fixed with hand controls. My dad also had to do this for his health problems so I know all about it. I can no longer wear shoes or sandals that dont have a back on them or a strap. Ok I can deal with all that. My right leg is now weaker than my left, understandably so, so I am working on doing those exercises but sure would like to see some improvement. I plan to go see my radiation oncologist to revisit this issue again.

I am just curious if others have experienced this side effect from radiation or ILP?? I am also still doing well as a "complete responder" to Ipi and am returning to work soon at the mental health agency where I have worked the last 12 years.

Vermont_Donna, stage 3a NED

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glewis923's picture
Replies 7
Last reply 6/23/2011 - 6:25pm

Hello Folks!  Back again trying to glean some knowledge as i'm all cleaned out.  Brief history: 12 plus brain mets 1-26-11 found.  SRS and whole brain 2-1st thru 2-25th.    Yervoy / IPI 3-1st thru 5-? (4 rounds complete.

a couple of weeks ago i began having headaches- last week up till now been agonizing 24 hour (almost) affair.  I have not changed any meds. since beginning Kepra which i takr 2 1/2's per day (yes, i should be taking 2/day);  vicodin (hydrocodone) that i took 3 4 max./ day after 2 pm to help with "general aches and pains , and frankly "well-being".

After 7 at night i take 1 to 3 .5 Avitan.

 

Dr. yesterday prescribed Nuerontin -300 mg./1 at nite..  i took i last nite and not sure if it helped.  ONLY thing that does seem to help is Alka-Seltzer (good 'ole aspiran.......but have many small brain tomurs-some with minor hemmorage "halo",  so i probalbly shouldn't be.

Any Advice Please!  has anyone had these headaches pop up after above experiene?  I going crazy.

Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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CAdesiree's picture
Replies 2
Last reply 6/23/2011 - 6:09pm
Replies by: MichaelFL, Janner

i went today for my second opinion.  the dr is setting me up for scans & mri.  she is also sending me to oncology surgeon.  states last drs note on MOHS not very complete.  wants me to meet w surgeon to decide if we will reopen original site to verify NED.  is concerned bc biopsy stated margins involved.  so back to waiting some more.  at least i feel more comfortable w this dr.  but i will be finding a new derm to do the addl biopsies.  thanks for all the help you all have been.  i really appreciate it.  if i hadnt been warned that an oncology specialist might not biopsy i would have had a different appt today.

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debandmike's picture
Replies 8
Last reply 6/23/2011 - 9:46am

On Tuesday we went to Detroit to receive Mike's scan results from his 1st series of IL-2. IT"S WORKING!! Tumor in lung has shrunk some 10% and tumor in liver is stable with no spread of cancer. Yeah!! Going back to hospital on July 11th for round #2. Wishing results could be faster but learning that patience is what is needed to fight this nasty cancer. Hoping for continued good news in the future and hoping Miike will be able to handle his 2nd round of IL-2 as well as he did his first.

Debby and Mike

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lkinnaman's picture
Replies 9
Last reply 6/23/2011 - 7:25am

Hi All! I am so happy to find you! I am a fulltime parent of 2 young children and after growing up in sunny So. Cal., was diagnosed with Nodular Melanoma about a month ago, a day before my birthday, have had PET/CT w/contrast, WLE and SNB. Node is clear, excision is clear and is localized to the arm. Melanoma was found in the adipose tissue and a "small cluster of malignant melanoma discontinuous w/ main bulk of tumor". However, the pathologist cannot determine if this tumor is the primary or secondary site! The original shave biopsy came back with at least a Breslow of 1.8 and Clark level IV deferring to final path report after WLE.

Blood work has been unremarkable, except for a mitotic index of 9. There is no ulceration, no lymph-vascular invasion, perineural invasion to identified, tumor infiltrating lymphocytes and regression are absent,

A final complication is that I have had rheumatoid arthritis for 25 years with several treatments that suppress my immune system.

According to my oncologist, I "have a very unusual tumor". With this info, I really don't know what to do. Do I look into trials, get a second opinion, push for a certain treatment, if at all?

Any suggestions are so much appreciated!

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Gene_S's picture
Replies 1
Last reply 6/22/2011 - 7:05pm
Replies by: NYKaren
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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awg's picture
Replies 2
Last reply 6/22/2011 - 2:32pm
Replies by: Janner, MichaelFL

As a newer member to the form I want to thank everyone for the abundance of great information that is available, It has been very helpful to me and my family.

I have a friend who was just diagnosed by her derm with a 0.2mm Melanoma on her upper back.

The derm is planning to remove the surrounding tissue, wide excision himself (she was told it could be about half the size of a football) . It is normal for derms to do this?

I know primary depth is a huge determining factor but my derm sent me straight to surgical Onc but my melanoma was greater that 1.0mm.

Would it be best Surgical Onc for Wide excision and do a Node bx as well?

Thanks,

 

Allen

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Linny's picture
Replies 5
Last reply 6/22/2011 - 10:50am

I have Stage III melanoma with an unknown primary. Only one lymph node had tested positive for melanoma in December. Back in January I had all the lymph nodes removed from under my left arm and am NED. Or, I hope I still am.

In March I qualified for the MAGE vaccine trial and in order to qualify I needed to have clean scans, which I did.

Fast forward to last week. I had begun noticing soreness and tenderness at the surgical site. There was no bruising, there was no redness -- it just was sore and tender to the touch. I had a CAT scheduled anyway so I figured that if something was going on it should show up on the scan.

When I went to see Dr. Scharfmann at Johns Hopkins today, I mentioned the pain and tenderness to him and coincidentally enough, he mentioned there was an abnormality found on the CAT scan at my surgical site. All the major organs were fine, though. He could not say with 100% certainty that it was scar tissue but he seems to be favoring that. The pain and tenderness might be an inflammation caused by surgical clips that were left inside. During his exam he found no unusual lumps anywhere. I will need to undergo an ultrasound so the folks at Hopkins can get a closer look at that abnormality. If it looks suspicious they will do a needle biopsy.

He didn't seem overly worried so I'm still on the trial. But it's easy for him to not worry, he's not me! LOL.

I'm trying to remember the positive things (major organs are fine and if melanoma has decided to rear its ugly head it will have been caught early) but I just don't want to dig myself into the same hole I was in back in December when I was first diagnosed. So I'm posting this to find out if anyone here has had a similar experience or knows of someone else who has.

Thanks,
Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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