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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Hi All! Sooo, here I thought maybe, just maybe that I'd never see the likes of melanoma again. I got a shocker. Well, in a way, that little voice seems to quite never disappear...but, it was a good run for over 10yrs. 

A little background: I was first diagnosed with 2C back of upper right arm (lymph nodes were clean) & went through a full year of high dose interferon. I never lost weight on it, if anything, I still had my appetitie. I was a lot more sensitive to salt as I remember. I went to the infusion room at the hospital everyday for the first 30 day & then I gave myself a shot in the stomache 3x a week for the next 11 months. I had excellent PPO insurance at this time.

 

Fast forward to today & no Insurance: A few months ago I had a bit of a nodular bulge in the abdomen area---I thought it might be a hernia. I went to a community type clinic and they said it was cellulitis--prescribed me a very strong antibiotic I had never had before for 10 days. The side effects were horrendous. On day 8/9 my whole body was on fire & I was red & blotchy...then I looked in the mirror and was covered head to toe with little red dots. I freaked out. Found out after calling the pharmicist that is an allergic reaction...popped a few benadryl. It took several days to over a week to get it out of me. So, the little bulge remained, but, now started to change...went to another clinic and they said it looked like an abscess and to go to the ER. The ER admitted me to the hospital for surgery. They believed it to be a hematoma. They did make comments as to the fact they have never seen anything quite like it before. (now here comes that little voice) Surgery went well & I was impressed they didn't try and kick me out of the hospital sooner since I don't have insurance. I was there a couple days & they wanted to keep me a 3rd day (but, I had a dog at home & convinced them to let me go) They sent samples off to pathology. I learned how to pack the wound & change my own dressing, but, also utilized the free clinic services. A few weeks go by & I mention that close to the incision area that it feels tough & denser. I also had a follow up appt with the surgeon (he didn't charge me for the visit & cut what I owed in 1/2) he said it was healing beatifully...so I went with it. More time passes and I go back to the surgeon's office & that's when I found out the bad news. He said it came back as melanoma. He was shocked. I am, too and frozen.

So, in the last couple weeks it has redeveloped again and gotten larger & I will now have to self admit back into the ER to get surgery again. I. AM. SCARED. 

I am looking for any guidance, tips, support, friendship, etc. I need to get a plan together, but, everything is moving so slow, but, melanoma is not on any schedule.

Thank you for reading my long-winded intro!

~Cindy

 

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DianaD's picture
Replies 6
Last reply 8/15/2015 - 8:48pm

Waiting for biosy results over a weekend is the pitts!  I found this information about why biopsies can take so long: 

 

What happens to the skin sample after the biopsy is removed?

After the biopsy, the skin sample is fixed in special solution, and thin sections of the tissue are cut and placed on microscope slides. The slides are stained for examination by a doctor (usually a dermatologist or pathologist). Sometimes specialized stains are used to examine for antibodies, immune proteins, and other markers of certain diseases. Initial routine biopsy results can be obtained in 48 hours or less, while specialized staining techniques can require a much longer time until final results are available.
I had the mole on my back removed this past Monday at the University of Chicago.  The doctor told me that a dermopatholgist would look at it the next day, but that it could take up to two weeks for me to receive the pathology report. 
Separately, I've just been diagnosed with liver disease, of unkown cause.  I'm flying to Chicaog again on Monday, to see a liver specialist at the University of Chicago, on Tuesday morning.  
I'm hoping that it's not the worst case scenario, i.e., melanoma with mets to the liver. 
Although I live in Ann Arbor, Michigan, which is home to the University of Michigan Health System, I was able to get appointments for both the biopsy and the liver consultation more quickly at the University of Chicago.  I'll use the U of M appointments for second opinions. 

DianaD

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Polymath's picture
Replies 9
Last reply 8/15/2015 - 4:49pm

I don't recall this topic coming up and have always had my suspicions.  Like Artie, I had every side-effect possible in the extreme when on my first drug therapy Zelboraf.  It was a horrendous experience but my goodness, was it effective.  My tumors, several subcutaneous seemed to melt away in what was days, not weeks.  But after progressing in just three months, Taf/mek combo, then Yervoy, then Keytruda all were easy to tolerate, and (lucky me) had few if any side-effects at all.  But all these were completely ineffective (unlucky me), and now I'm in a clinical trial having exhausted all FDA approved (insurance covered) treatments.

Has anyone else noticed a correlation between side effects, and the effectiveness of treatment or is my case seem unique?

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So, I am wondering if any of you know of anyone who has used cannabis oil for treatment. Would love to hear feedback. My cousin's mother in law had an inoperable brain tumor & was given 6 months to live. She got on this cannabis oil and in 5 months the whole thing is gone. The doctors are amazed. (I have the pictures) I do realize that many of us can not even get our hands on this oil & I really wish that would change.

 

Have you changed your diet & if so, to what & what improvements have you seen in your health? For me, I am trying to buy more organic, GMO free foods as well as grass fed pastured type meat. I recently started adding gelatin (Great Lakes brand) as well as magnesium into my diet. I am feeling a bit of difference with this and sleeping better.

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Hikeratheart's picture
Replies 7
Last reply 8/15/2015 - 1:04pm

 Hi everyone,

I have been reading the forum for a few months, it has helped me tremendously through my diagnosis.

I need help deciding on interferon.

Here's my story:

On May 21st, 2015, I had biopsies for two spots, one on my back, which was thin, and another more concerning on my right arm. I was diagnosed with melanoma at the end of May. I have 2 primaries. Stage 2b. 

Surgery on July 1st -   SNLN biopsy, negative for majestic melanoma.   ( yeah, happy dance)

Wide re-excision of my right arm, biopsy: melanoma in situ, margins widely free of involvement, negative for invasive mel.  Breslows 4.5 , Clarks level 5. The depth concerned me!

Wide re-excisional biopsy of skin on my back,  .4 mm. Clarks level 3

negative for residual, invasive and in situ melanoma.

My oncologist, Dr.  Robert Taylor in Milwaukee (Aurora health) has advised me that since I have 2 primaries,  I should (could) do interferon for 4 weeks (5 days) and then  48 weeks /3 days.  On Monday, 8/10, I am getting a second opinion  from another oncologist. 

 

Please advise me me on this. If I understand correctly, I am in the gray area?  Is interferon all that is available or offered at this stage, so that's why their advising it? This is a big decision for me. I am a healthy 60 yr old woman with 2 new grandkids.  I really want to do everything possible for my good health, but have learned that it's a controversial treatment. 

Thank you for any help you can offer.

 

Kathy  McC.

 

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SABKLYN's picture
Replies 2
Last reply 8/15/2015 - 6:43am
Replies by: Anonymous
melissalynne's picture
Replies 1
Last reply 8/15/2015 - 4:36am
Replies by: stars

About 2 weeks ago I had a place come up next to my eye. It appeared all at once and resembles a pimple but never has went away. It is pink. Does this sound like a skin cancer and if so what type?? I had melanoma in situ a couple of months ago on leg but this spot looks nothing like that did

Melissa Riley

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jjd583's picture
Replies 7
Last reply 8/14/2015 - 7:13pm

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

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mkirkland's picture
Replies 5
Last reply 8/14/2015 - 7:03pm

Well since my last post I have had my wide excision on my foot and my slnb which came back positive. My original breslow of 1.5 changed to 2.96 and my Clarks level went from 3 to 5. I meet with my dr again next week to discuss lymph node dissection & scans. I am also in the process of scheduled an apt at MD Anderson which is a large cancer hospital with a great melanoma team. I want to know all my options!! 

But most importantly!!!! My question or really any info anyone can provide would be grateful... I have a one year old littler girl. Could it be possible that I had this melanoma when I was pregnant?? I know cancer can be passed through the placenta. I plan to ask my dr also. Any light that can be shed would be much appreciated! 

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Eileensulliv's picture
Replies 13
Last reply 8/14/2015 - 6:29pm

On Thursday, I went in for a CT scan (with contrast) and my usual nivo treatment. Before getting nivo, they give me some Benadryl because I broke out in hives once while getting my nivo. When I had a CT scan a couple of months ago, I started vomiting towards the end of my nivo treatment, and was really out of it for at least a day, so they started giving me half the dose of Benadryl during my treatments, and I have been just fine during every treatment since then.

This past Thursday I had the scan and the treatment, complete with Benadryl. During the treatment I started feeling cold and tired, which is not entirely unusual. I finished the treatment and they removed the IV. I went to the bathroom and started shaking from the cold. I went to gather my things and leave, when one of the nurses stopped me because I was shaking so badly. She looked at my eyes and immediately sat me back down, saying I was having a reaction. Getting another IV in for more Benadryl was a challenge because of the shaking, but they got it in and my reaction seemed to calm down. And then I started vomiting and fever spiked. Tylenol was no help for the fever, and eventually I was admitted to Hopkins, where I stayed until Sunday.

They checked all sorts of things, as I also developed shortness of breath while in the hospital and had to be on oxygen. The shortness of breath still comes about, but does get better everyday. They treated me with prednisone, and I have started to taper the dosage. I'm hoping this won't delay my treatments as it did for me back in March. My onc and I will talk later this week about how to proceed. At this point, it's safe to say something about the CT contrast isn't sitting well with me. But is it the contrast alone or when it's with the nivo... We don't know. 

Have any of you experienced this? I'm just curious as to what my future scan options will be. My onc says he thinks we could try a CT without contrast, but that there are other options.

Im sorry to make a long post even longer, but the BEST part is the CT scan results.... GREAT NEWS!!! The tumors in my lungs and most lymph nodes are GONE! The mesenteric lymph node in my bowel is stable, no change... However, it is just barely larger than a normal lymph node, and may just stay the size it is now because it was so enlarged earlier this year. My onc seems to think if he were to look at it under a microscope, he wouldn't find any cancer. He says we will continue on the nivo and scan again in another couple of months, but that so far "everything looks great"! Even in the hospital when I was, of course, wanting clarification (in utter disbelief that the tumors in my lungs and other lymph nodes are just GONE) he said he would call this a POSSIBLE partial remission! I think he was trying to be very cautiously optimistic with me, but I just kept pressing and pressing! 

I just read the CT scan report this morning and kept looking for the second page... It was so short! Here's to good scans, short reports, and a celebration without a hospital stay! Thank you all so much, I love the support I continue to receive through this board!

Eileen 

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Anonymous's picture
Replies 1
Last reply 8/14/2015 - 4:30pm
Replies by: DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2015 - 1:42pm
Replies by: Anonymous, Hayden30

Hello everyone, 

I noticed today "something" under my skin, which is about 1 cm (or larger???).  it has a pink-red circle about 5 on the surface, but it feels under the skin: not sure about the shape, but it is firm, attached to the overlyink skin (when taken between the fingers, it has a dimple sign associated with dermatofibroma), but movable agains a deeper tissues. I'll be trying tiger an appointment with modern ASAP, but Ian so scared. Can dermatofibroma be felt mostly under the skin??? Can subq have a dimple sign????  Thanks for listening. I am a Stage 1 B patient, 11 years after diagnosis.

 

 

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arthurjedi007's picture
Replies 12
Last reply 8/14/2015 - 12:50pm

I was wondering if this is normal. I made the trip last May to do the first face to face to see the doc. No openings for anything yet. Ok. I have the little card and the next day sent an email thanking him and he responded within an hour. Ok so that is a legit way to contact this doc. The phone numbers on the card are just for the office.

So I've sent 2 such messages so far asking about available treatment and no answer so far. I called and got to talk to one of his clinical trial nurses. She said I would have to come in again and then they would see if they had anything. Is that normal? In my head I'm like what the heck. I've already done the first face to face they say we have to do so later we can check back with them directly because we are now their patient. Am I just being naive and this is normal? When she said that I'm thinking in my head to heck with you folks it would be better worth my effort to go to a different maybe bigger place I haven't been before.

I dunno. Getting in this trial stuff is hard enough without this crud. Is this type of response normal?

Sorry I'm just already frustrated and annoyed on top of the normal disease and med making me hurt and feel crummy.

Artie

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Tim--MRF's picture
Replies 5
Last reply 8/14/2015 - 10:53am
Replies by: Tim--MRF, Ed Williams, Anonymous, Bubbles

We have been following discussions with the FDA around approving Opdivo (nivolumab) as a first-line therapy for metastatic melanoma. Currently the label require patients whose tumors have the BRAF mutation to have BRAF therapy first, then Yervoy (ipilimumab), and only take "nivo" after those approaches have stopped working or proven intolerable. Patients without the BRAF mutation must progress on ipi before taking nivo. 

The company who makes nivo, BMS, has applied to expand the approval so the drug can be given as the first treatment, instead of the second or third. The FDA said it would make a decision by September 30. They have now announced that the deadline for that decision has been pushed back by two months. What does this mean and how will it affect patients?

First, the reason for the delay is that BMS has recently submitted a large amount of new data focusing on patients with the BRAF mutation. The FDA simply needs time to review this data.

Second, based in the initial data the FDA could have approved nivo as first line therapy only for patients whose tumors do not have the BRAF mutation. With this additional data they are more likely to take action for all patients regardless of BRAF status.

Third, the oncology drug section of the FDA has done a good job recently of acting before their deadline, and sometimes well before the deadline, so we can hope this will be the case in this situation.

Fourth (and last!), many oncologist are prescribing either Opdivo or Keytruda (which has the same restrictions) as first line therapy despite what the label says. This is in keeping with other guidelines and has not generally faced any pushback from insurance companies around coverage.

The bottom line is that the delay is not a cause for alarm and may result in more patients having access to anti-PD1 therapy faster.

 

Tim--MRF

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Millykamp's picture
Replies 10
Last reply 8/14/2015 - 3:45am

About 2 weeks ago I had an shaved biopsy on a mole done on my neck. The derm had called and said we need you back in to redo the same spot. Due to what it had said  in the report its non cancerous but it's giving us some reading...  I go in tomorrow for re shaved. But this time more wider and deeper tissue is being biopsy on again...  

 

I am am confuse by the whole thing. Can someone explain it to me?   

Melissa 

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