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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Boos Mama's picture
Replies 5
Last reply 6/25/2011 - 5:55pm
Replies by: Anonymous, Ranisa, DeniseK, Boos Mama, MichaelFL

I found a Melanoma last year, 2010, when I was pregnant with my son. It was early, in situ, minor surgery, no big deal.
My sister and my cousin have also had Melanoma. Sunday night, 6/19 I found a mole on the outside of my knee that I know had not been there. It's about the size of a pencil eraser, more red than brown and slightly raised. Last night, Friday I found another about five inches away almost identical. I know it had not been there. I also had some numbness in my toes recently that I just attributed to my migraines, probably a coincidence.

It's Saturday. If they are fast growing melanoma, they are growing really fast. I have had the service page my dermatologist but so far no answer. What would you do???????

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/25/2011 - 5:02pm
Replies by: boot2aboot, Anonymous, lhaley, MaryD, Carol Taylor

Hi Everyone,

I am new to MPIP & this is my first time posting.I am stage 3. A few weeks ago, I had surgery to remove a 3rd recurrence in my thigh.  The surgeon got some clear margins but not  the lateral margin. Apparently, he could not see a "satellite nodule" at the lateral margin.

The pathology report stated " a satellite nodule present at lateral margin". I contacted the pathologist to inquire how large was the satellite node. The pathologist told me that the nodule had been "cut through" and that the nodule was 2mm but he could not tell how large the other side of the cut tumor nodule was that remains in my thigh.

I am devasitated that the satellite nodule tumor was cut through & remains in my thigh. I can only speculate that melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system because it was cut & did not remain contained within clear margins

There are so many of you experienced & knowlegeable about melanoma, surgery. treatment, etc. so I sincerely would appreciate your opinion about the significance & ramifications of the satellite nodule tumor being cut through.

Am I overacting that hat melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system???

Thank you so much for your help.

James

 

 

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Nicky's picture
Replies 3
Last reply 6/25/2011 - 10:47am
Replies by: jimjoeb, Nicky, Carol Taylor

Hi everyone, well I was admitted to hospital to get a wide excision on the melanoma in situ on the right upper back and fortunately the surgeon discovered another suspicious mole on the left upper back which has been excised.  so a little bit sore but recovering well from both surgeries.

This is now my third melanoma primary over 11 years.  I am still currently Stage III and I hope to remain that way.  It certainly gives you a reminder not to drop the ball when it comes to regular check ups.  It was six years since my last melanoma and I still feel that my survival has been mostly due to early detection and being proactive with health professionals

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renakimu's picture
Replies 2
Last reply 6/25/2011 - 10:43am
Replies by: jimjoeb, MichaelFL

hello and goodmorging for everyone

does anyone know about homeopathy and mel?if  it is succeful?if someone know smthng pls help

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eaca's picture
Replies 3
Last reply 6/25/2011 - 9:58am
Replies by: Ranisa, DeniseK, washoegal

First off the good news: my doctor just called with the results from my SNB and WLE - all clear!  I'm so relieved and happy I can stick to the rest of my summer plans without having to go back for another surgery.

Now the question: the doctor recommended that I go in for a CT scan and consultation with the medical oncologist, since my original melanoma was considered medium risk (3.2 mm, ulcerated and mitotic figure of 25).  She said this is fine to be done when I am back in the US (I'm currently in France) third week of July.  Does this recommendation seem reasonable to those who are more experienced?  Would this be the normal follow up for my situation and is waiting until later in July to do the scan fine?

Thanks for your thoughts on this.

Elisa

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shellebrownies's picture
Replies 28
Last reply 6/25/2011 - 6:36am

Morning all,

I am becoming increasingly frustrated with my husband's care under Dr. Ibrahim. I am hoping that you all will be able to put this into perspective for me and tell me whether I am having unreasonable expectations or not and whether perhaps I should check into moving my husband's case to Dr. Hodi. I know at least one person here has him as their doctor and has given him a glowing review.

I would just like some feedback whether I am being unreasonable in my expectations or if I have some justification in my concern.

We were able to get in to see Dr. Ibrahim at DF pretty quickly (I thought)...less than 2 weeks after starting the process (we had to get all his med records and test results forwarded as well as notes from all the doctor's he'd seen in the 2 years since Don's original diagnosis). From that point on is where my dissatisfaction begins.

At Don's first appointment with Dr. I, she tells him that his original tumor area had been extracapsular and had infected the surrounding tissue, so his chance of reoccurence was high risk. Then she tells him that she was concerned about how quickly the tumor had grown under his arm and was worried it might mean his melanoma was an aggressive kind. 

After that speech, she said she wanted to do a second PET Scan (he'd had one done the week before which showed cancer in more lymph nodes in his shoulder and an area of concern on his left neck) to check for that trouble area again. She wanted 3 weeks between the scans, even after all she said about his high risk and aggressiveness of the mel.

I was not happy about this and questioned her on it, but she said she wanted to give Don's surgical site more of a chance to heal so it wouldn't give false positives on the PET. At that point, they were going to contact the hospital the did Don's lypmhectomy to get a sample to test for BRAF.

We waited the additional time (3 weeks between scans) and had his PET redone on th 29th. Dr. I had told us that if further hot spots turned up on the new PET, he would need CT and/or MRI to confirm. So, not wanting to wait a week until the 6th to get our answers, I called Dr. I that Monday afternoon. I wanted to know whether he was going to need the additional scans, because we didn't want to wait until the 6th to find out and have to wait even LONGER for more tests. If he needed them, we wanted to get them scheduled right away. Dr. Ibrahim said that no further testing was needed at that time. This, of course, gave us the impression that the PET came back with good results.

Yet, when we got to the appointment on the 6th, she tells us that the cancer had spread to several areas away from the original site and he was going to need more tests (CT and MRI). This was the EXACT reason I had called her on Monday! I was bullshit! Granted, they got him in that same day to get both tests done, but we could have had these tests done and she could have had THOSE results that Friday as well, you know?

Then they tell me that the BRAF testing wasn't complete yet because our hospital hadn't yet sent the specimen. I was on the phone with the doctor that Monday...why the heck didn't she mention it then when I could have taken care of it? Or called after the first week and they hadn't got it sent yet for that matter? I literally got on the phone with the lab at the hospital while we were IN HER WAITING ROOM and arranged to have the specimen overnighted to DF. 

Dr. Ibrahim said she was surprised at the amount of change in Don's results in only 3 weeks (new scan showed bone lesions scattered on both hips, left leg bone, left arm bone, one left rib and both bones in the sternum, as well as tumors in both liver lobes), yet when I asked her if it was unusual she said no. I don't feel like we are getting straight answers from her. This is one area where I'm hoping some of you could give me feedback. That amount of change seemed to confirm the Dr's thought that this mel could be an aggressive one. Yet, I'm not seeing any sense of urgency in dealing with Don's case.

I called Dr. I's line on Monday, because I wanted the results of the MRI/CT scans. Her fellow called back and said they don't like to give out results over the phone because they'd prefer to do it in person in case it's bad news. I told him I didn't care if it was bad news so much as it would affect course of treatment right away: reason being that if he had brain mets, he wouldn't qualify for the trials and they could just start Yervoy right away. Reluctantly, he told me that the MRI was clean. I asked him if the tissue had arrived from our old hospital. He said he wasn't sure. I asked him to call me right away if it wasn't there yet, because it had been promised to arrive on Saturday.

I was told that I would get a call from radiology on Monday for Don to be scheduled for a liver biopsy to confirm the Stage IV diagnosis. No one called, so I had to call Monday afternoon to follow up (their biopsy procedures appear to be done at Brigham and Women's Hospital next door) and get it scheduled. That department hadn't even gotten the paperwork from the doctors for the procedure yet, which was why they hadn't called. I got him in for Wednesday (2 days ago). 

When we got there for the biopsy, we were told they were taking several samples, one of which was to test for the BRAF mutation. Is it standard that they would test every tumor for the same mutation? Or is something fishy here? I mean, if the tissue sample they received was not viable for the test, I would have liked to have been informed of that, yet, they told us nothing.

Now, of course, I would like to be informed of the test results as soon as they get them, but that appears to not be this doctor's policy. Don's next appointment is the 20th, which is 3 weeks from the date of his last PET scan. If his mel spread as much as it did in the prior 3 weeks, I can only imagine what is happening in this additional 3 weeks. (It would not at all surprise me to learn that the cancer has spread to his lungs, for example) But I still don't feel as if there is any sense of urgency attached to his case. 

I placed a call to the call line yesterday morning and asked to be called back because I had questions: we wanted to know why they needed the additional BRAF test done as well as find out how soon Don might be able to start treatment after his appointment on the 20th. It will be 7 weeks since the surgery by that time...7 weeks of absolutely no treatment with the melanoma running wild in Don's system.

When I didn't get a call back by 3:30pm, I called again. The nurse taking the message said she'd try to get someone to call back that day, but usually calls that came in that late wouldn't be answered until the next day.

Am I being unreasonable to expect to hear results as soon as the are available so they can be acted upon more swiftly? I don't feel like Don and I are being treated as partners in his health plans. I wish that they could have given him advice on excercise and diet and anything at all that he could be doing in the interim to try to get his body's immune system to try to fight off the cancer better while we were waiting for treatment. I realize Don is not their only patient, but I am not okay with the apparent lack of urgency.

Please let me know if you think I have unreasonable expectations and if not, can anyone give me feedback on Dr. Hodi from DF? I know at least a couple of boardies have him as their doctor, and I'd like to know if his approach would more mesh with ours. Thanks!

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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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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