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
Anonymous's picture
Anonymous
Replies 12
Last reply 3/7/2016 - 3:10am
Replies by: Tra88, CatHar12, natasha, Anonymous, Janner, MichaelFL

I was diagnosed last year with 1a SSM on my back.  Breslow 0.33mm, no ulceration, one mitotic figure identified in dermis (mitotic rate listed as <1), because of that mitotic figure in the dermis vertical growth phase listed as present (early invasive vertical growth phase), Clark II (I know this is not used as much nowadays).  Had WLE and SLNB (I know it wasn't necessary with 0.33, but I pushed for it), results were clear.  I'm very worried about recurrance/metastasis down the road, because of the vertical growth phase invasiveness.  I don't have a good handle on my prognosis, because even though stage is 1a, Breslow is thin, etc.....it seems like of the thin melanomas, I'm in a high risk category because of VGP and dermal mitotic figure identified.  So, I'm really struggling with this.  What would my prognosis really be with this?

Login or register to post replies.

texaninlouisiana's picture
Replies 4
Last reply 5/19/2012 - 9:13am

 

Good Evening - new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly -- including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums -- both here and melanomaintl.org -- it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc -- it's very frustrating.

Anyways, back on point...I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

Thank You All in advance.

Login or register to post replies.

James from Sydney's picture
Replies 2
Last reply 5/21/2012 - 3:39am
Replies by: deardad, AllyNTAus

This was released today and shows GSK BRAF drug shows positive outcome for those with Brain involvement

best wishes to all

James

 

http://www.melanoma.org.au/images/Files/Media_releases/mia_brainmets_180...

Login or register to post replies.

Hi everyone,

 

       I feel so foolish posting on here when I know there are people in much much worse situations. I have been racking my brain for eight days- since my derm first told me that my mole has all four characteristic of suspicion and needs to come off "as soon as possible". Tomorrow is the day I've been waiting for- to get this scary thing taken off. Today the office called to move the appointment- I was afraid to next week- but instead they wanted to move it up an hour. My mom asked me to find out when I could have the results,so I asked while I was on the phone with them. I figured I would have to wait until maybe next tues or wed- possibly a week tops.

   Much to my surprise, they said usually about two weeks, maybe one if I'm lucky. I have never needed valium or xanax so much as the past eight days, but of course I don't have any. I've just been trying to get through until tomorrow, but now it feels like I'm just barely getting into finding out anything.

  I know it's dramatic, and I know I'm so lucky compared to people who have already gotten terrible news, but I'm so very terrified. I can't stop crying, can't eat, sleep, or focus on school. I don't want to be negative, but it's where my mind keeps ending up.

 

Is this normal for biopsies to take two weeks?

It feels like I'm a step behind if there is anything wrong. It takes time to get an appointment if there is something else wrong, and it takes two weeks just to find out if you need that next appointment.

On another note, I haven't told anyone except for my husband and my mother (who then told my dad and my sister). No one else knows what's going on. My husband has left almost every night after work to go hunting, while my mother has uncharacteristicaly scarcely called me this week. This has been the scariest, loneliest, and longest eight days of my life and I'm not sure how or when this journey will end.  I feel so pathetic for not being more positive and so utterly alone.

 

One last question: Does anyone know of any doctors in the oklahoma city area or even in Oklahoma that can "fast track" these kinds of things?

I'm so sorry for the rant and keep everyone in my thoughts and prayers.

Login or register to post replies.

Replies by: brookecz79, Tina D

Hi everyone,

 

       I feel so foolish posting on here when I know there are people in much much worse situations. I have been racking my brain for eight days- since my derm first told me that my mole has all four characteristic of suspicion and needs to come off "as soon as possible". Tomorrow is the day I've been waiting for- to get this scary thing taken off. Today the office called to move the appointment- I was afraid to next week- but instead they wanted to move it up an hour. My mom asked me to find out when I could have the results,so I asked while I was on the phone with them. I figured I would have to wait until maybe next tues or wed- possibly a week tops.

   Much to my surprise, they said usually about two weeks, maybe one if I'm lucky. I have never needed valium or xanax so much as the past eight days, but of course I don't have any. I've just been trying to get through until tomorrow, but now it feels like I'm just barely getting into finding out anything.

  I know it's dramatic, and I know I'm so lucky compared to people who have already gotten terrible news, but I'm so very terrified. I can't stop crying, can't eat, sleep, or focus on school. I don't want to be negative, but it's where my mind keeps ending up.

 

Is this normal for biopsies to take two weeks?

It feels like I'm a step behind if there is anything wrong. It takes time to get an appointment if there is something else wrong, and it takes two weeks just to find out if you need that next appointment.

On another note, I haven't told anyone except for my husband and my mother (who then told my dad and my sister). No one else knows what's going on. My husband has left almost every night after work to go hunting, while my mother has uncharacteristicaly scarcely called me this week. This has been the scariest, loneliest, and longest eight days of my life and I'm not sure how or when this journey will end.  I feel so pathetic for not being more positive and so utterly alone.

 

One last question: Does anyone know of any doctors in the oklahoma city area or even in Oklahoma that can "fast track" these kinds of things?

I'm so sorry for the rant and keep everyone in my thoughts and prayers.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 5/28/2012 - 10:26am
Replies by: becky15, natasha, Anonymous, Janner

 

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?

Login or register to post replies.

 

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?

Login or register to post replies.

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

Login or register to post replies.

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       

"

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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!

Login or register to post replies.

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"

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

Pages