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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I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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Mandi0280's picture
Replies 2
Last reply 5/17/2012 - 8:01pm

My husband was diagnosed with stage 3b 7 months ago. He went Monday for a CT scan of the neck,chest, abd and pelvis and have not got a call back from the DR yet. I have called several times with no help from anyone. I finally got a copy of the CT scan results myself! The impression says ....No dominant lymphadenopathy or soft tissue masses. Stable small neck and right supraclavicular lynph nodes. That's all it says...does anyone know what this mean or has had this show up before??? Thanks for any help! Mandi

Mandi

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 6:49pm
Replies by: Anonymous, Janner

I am so confused about all the varying information on google.  I have found a sit called medhelp in which the dr says this(copied and pasted from medhelp Dr response to question about melanoma in-situ).  Is this really being blown up by me as I am a person who deals with hypochondria.

 

Here is what i took from medhelp-

"I understand your anxiety, but you are taking your concerns too far. Just because you had one atypical lesion doesn't mean that every spot you get will be atypical. (The same is true for a freckle that comes back in the same place.) What you need is to work with a doctor you trust to look at your spots carefully on a regular basis and to test anything that looks worrisome. That seems to be what your doctor is doing.

Most spots don't develop into anything. You don't need to remove them preventively. You just need regular watching.

Melanoma-in-situ is not melanoma. It presumably might turn into it if left alone, which it won't because it was taken off.

If there is a teaching hospital with a Pigmented Lesion Clinic anywhere nearby, you might want to visit there to get an overview and proper counseling. I do not advise your attempting to interpret your own pathology reports.

Good luck.

Dr. Rockoff       

"

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 11:46am
Replies by: Erinmay22, Anonymous, hopefortomorrow, lhaley

My husband was diagnosed with metastatic melanoma - a week ago. He had a full-body exam with the blue light on Monday and they didn't find a primary site. We are still waiting to get an appointment for the CT/PET scans. Why does it have to take so long just to find out what's going on? Don't they know what this is like - not knowing? Why can't they do something to get this started already?

How do I just get through this next phase?

blogging at www.hazelbecker.com

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Anonymous's picture
Replies 2
Last reply 5/20/2012 - 12:22am
Replies by: momreader, Tim--MRF

I am hoping somebody can help or advise me.  My father was originally diagnosed with melanoma in his toe about 2 1/2 years ago.  His toe was amputated, and then everything was all clear for 2 years, and we were so happy and relieved.  A few months ago, they found something in his small intestine and one of his feet.  He went into a trial for ipilmumab (yervoy) and MDX 1106 combined.  We were very optimistic as so many people seemed to be helped by yervoy, and it seemed my father's prognosis was good b/c they caught it early and the tumors were small. 

Well, everything kind of went haywire.  My father had many problems after starting this trial - skin problems, his thyroid basically burned out (now being treated by endocrinologist), he had liver issues which resolved, and unfortunately he now has some kidney issues (creatinine levels too high).   My father did not complete the whole first course of trmt  (he ended up having the first infusion, then had to miss the 2nd due to  bad side effects, then he had the 3rd trmt, and missed the 4th (there are 4 treatments - one every 3 weeks for the first round).   In middle of all this, the tumor in his small intestine got much worse, and he needed to have surgery to remove it, which happened about 3 1/2 weeks ago.  Thank G-d, that went well, and we were left with the tumor in his foot.  The doctors felt that the immunotherapy wasn't tolerated well by him, and even though they would have preferred to treat the melanoma systemically, they said we should meet with the surgeon to discuss removing the melanoma that remained in his foot.   The surgeon wanted a Pet scan first, which he had, and we met with the surgeon today and he said that unfortunately the melanoma is no longer in one spot in one foot- it is in both feet, and in 4 spots, 2 in each foot.  He didn't feel surgery was a good option. 

So now we need to figure out what to do.  We still need to get the creatinine levels under control ( my father is having a liver biopsy on Monday), and this could be a problem in having future treatment, but hopefully that will figure the kidney thing out - it is a rare side effect to the Yervoy (or MDX1106 - who knows what caused it?)  My father could have chemotherapy, but from what i read, that is not considered to be so great with melanoma.   They don't think radiation is a great option with so many spots.  I am trying to research different treatments out there. My father does not have the BRAF mutation.  They are testing him for the KiT mutation. We are hoping we can manage this disease so my father can live a long life.  He is very beloved by our entire community and is the heart of our family.  My children are babies and I am scared, I want them to grow up with their wonderful grandfather.  Can anyone please help and give me some ideas of what to be looking into?  I have spent hours researching melanoma treatment and am a little unsure what our options are now.  We are trying to stay positive - it is so important - but would love some advice about now.  Any help would be so greatly appreciated.

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teri0915's picture
Replies 4
Last reply 5/18/2012 - 4:01pm

Last week i had a brown stripe and a new mole/freckle removed from my excision scar. Normally I'd get results by now so i called the derm to chdck. The pathologist called them to yesterday to request the path results from original excison to compare to these results. Why would they have to compare? Shouldnt it just be if its there then its there same as if its neg then its neg? Has anyone had experience with this? Im worried that its back olus i have a full ct in the morning. Any advice would be helpful
Teri

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Glaxo’s Melanoma Cocktail Slows Cancer in Study

By Makiko Kitamura and Robert Langreth - May 16, 2012 6:00 PM ET

GlaxoSmithKline Plc (GSK)’s combination of two experimental melanoma medicines slowed cancer progression with few skin complications in an early clinical trial, a result that suggests the combo may have fewer side effects than existing single-drug treatments.

Patients taking Glaxo’s dabrafenib and trametinib together had a lower incidence of rash and skin lesions than previously reported with Roche’s Zelboraf, according to a study of 77 patients with advanced melanoma, the most-severe form of skin cancer. The study, funded by London-based Glaxo, was released today ahead of the American Society of Clinical Oncology meeting that starts June 1 in Chicago.

“Not only are the two drugs causing shrinkage of the cancer, but we’re seeing that a second anti-cancer therapy may actually suppress the side effects of the first,” said Jeffrey Weber, an oncologist at the H. Lee Moffitt Cancer Center in Tampa, Florida, in a statement. “So far it is looking good.”

If the Glaxo combination succeeds in final-stage trials, it would compete with Zelboraf, a targeted therapy cleared for sale in the U.S. in August. Both Zelboraf and Glaxo’s dabrafenib work by blocking BRAF, a mutant gene that spurs cancer cell growth in about half of melanoma patients. Glaxo’s trametinib is designed to thwart a related protein called MEK, which helps tumors resist an assault on BRAF.

Adding the MEK drug may reduce a signature side effect of BRAF drugs like Zelboraf, the development of non-melanoma skin cancer, while possibly boosting efficacy, said Weber, a study leader, in a telephone interview. Weber has consulted for Glaxo and Roche. (ROG)

Non-Melanoma Cancers

About 15 to 30 percent of melanoma patients treated with Zelboraf and other BRAF inhibitors develop non-melanoma skin cancers, scientists at the Institute of Cancer Research said in an article published in the New England Journal of Medicine in January. The drugs speed a type of skin malignancy known as squamous-cell carcinoma in patients who may have gotten the cancer anyway, they said.

Only 3 percent of a larger group of patients in the Glaxo combo study, which also included other solid tumors, developed squamous cell carcinoma, and 5 percent developed premalignant lesions called actinic keratoses, Weber said.

Across various doses, the combination delayed progression of the disease by 7.4 months. In the high-dose level, which will be studied in further trials, the two-drug therapy delayed the progression of the disease by 10.8 months, Weber said.

Roche Comparison

Roche’s Zelboraf delayed melanoma tumors from progressing for 6.8 months in one early trial and 5.3 months in a final-stage trial.

“It would look clearly superior to the figure we have seen” with the Roche drug, Weber said on a conference call with reporters. “It is a very impressive record by any criteria.”

Charlotte Arnold, a spokeswoman for Basel, Switzerland-based Roche, said in an e-mail that “it is not appropriate” to compare data from Zelboraf’s approval trials to results from the early study of Glaxo’s combination, as it did not directly compare the agents. Zelboraf has been proven to extend survival of melanoma patients.

Glaxo plans to start a final-stage trial “as early as this month” said Melinda Stubbee, a spokeswoman for the British drugmaker, in a phone interview. The trial would compare the combination to Glaxo’s dabrafenib alone in melanoma patients.

Glaxo also has also been studying each drug separately for melanoma and will seek regulatory approval of both compounds individually later this year.

Melanoma strikes 68,000 Americans each year, according to the American Cancer Society. While patients with early stage disease respond well to treatment, the five-year survival rate for those with cancer that has spread is 15 percent.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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eerye70's picture
Replies 3
Last reply 5/21/2012 - 1:02pm
Replies by: eerye70, Anonymous, Tim--MRF

I had a melanoma in situ diagnosed in november on my right shoulder. I have tons of atypical moles. I am so spotted. I did some mole photography to keep track of them all for change. Well, i have a mole, on my right leg, it is no bigger than the tip of a pencil lead, that is dark with a shadow to the side of it. I don't know how to describe it. I have this mole and then to the side of it is a softer, paler shadow of a mole. almost as if the mole was drawn in charcoal and then smeared. It seems to have gotten darker to me. and Now when i run my finger over it, i can feel it ever so slightly. So i have called the dermotologist and they will be seeing me on monday. My regular appointment was at the end of the month anyway, but i cannot imagine waiting until then. The truth is, i am going to lose my mind until monday as well. I almost wish i had a dermoscope just to peer at it a bit myself. Not that it would do any good, but it makes me nervous. Add to that, i have a small pea size lump in my groin on the same side. Please pray that this is all something routine and not melanoma rearing its ugly head. I feel as though i am going to throw up between now and then. Debbie

Time to put on your big girl panties and deal with it!

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noisy77's picture
Replies 7
Last reply 5/17/2012 - 6:40pm
Replies by: cwu, noisy77, Lucassi, susanr, janward

Hello - 

Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

Thank you.

 

Elizabeth

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Roxy1453's picture
Replies 5
Last reply 5/16/2012 - 8:59am

I had my PET Scan today and there are no new spots and the one I have behind my knee is shrinking!! I don't have to go back for 3 months!! This is such great news, I am on cloud nine! It's been a very long 7 years of fighting!!

Don't ever give up fighting!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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janward's picture
Replies 1
Last reply 5/16/2012 - 11:07am
Replies by: Karin L

I have completed 4 infusions of Yervoy.  The PET scans shows a favorable response to the treatment.  I do, however, have immune-mediated neuropathy which is getting more and more painful.  Anyone have these symptoms?  What treatment have you tried for the neuropathy and how succesful was i t?

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Bonnets's picture
Replies 1
Last reply 5/16/2012 - 11:09am
Replies by: Karin L

Sooo pleased to report that the 3 spots my hubby had bioed last week, were all NEG! Jean

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fighting4dad's picture
Replies 7
Last reply 5/21/2012 - 3:51am

 

My dad (stage 4) was supposed to start zelboraf yesterday, but at the appt. Dr. recommended they delay starting treatment until disease begins to progress again. (He was on Yervoy last fall and saw reduction in size of mets).  Has anyone heard of delaying? Supposedly Dr. told Dad that if Zelboraf doesn't/stops working there won't be much left to try, so better to wait and extend his life later.  This doesn't really make sense to me so I am looking for others with this experience, or maybe I should be trying to get Dad to get another opinion?

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TeresaK's picture
Replies 1
Last reply 5/16/2012 - 7:31am
Replies by: Anonymous

Can anyone recommend where I could send my melanoma in situ biopsy for a second pathology exam in Phx / Arizona area?

Thanks!!

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bikerwife's picture
Replies 3
Last reply 5/15/2012 - 8:38am

Had Dr. Appt Friday with Dr. Shirai tumors on body are still shrinking. We had gamma knife follow today. Dr. Generte walked in door with his team and said fanstatic. He had 5 mets they are gone only shadows and no new mets. Don't scan again for 2 months.

God has blessed our Drs with amazing healing hands. I know we have a long way to go but for know we dance.

I pray for each one of you every nite. May God bless you all. My husband is a walking miracle.

What God leads u to he will. Lead you through

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