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 everyone, I'm new to posting.  My step dad had melanoma 15 years ago (Stage 3) and did Interferon for a year.  I remember looking  at this site and getting all the info I could on Melanoma back then.  It really helped me get informed.  

Back in June of this year, he was diagnosed again with stage 4 and it's in his lungs, kidney, spine and esophagus.  They say too many to even count in one of his lungs.  He also had a malignant plural effusion which he had surgery for to drain the fluid in his lungs on 7-30-12.  They injected talc to prevent it building up again.  He is still healing from that and is very, very weak and tired and in a lot of pain all the time.  Now they have scheduled him for another surgery this Thursday 8-23-12 to put a stint in his kidney to try and save it.  And in the meantime he got marked for this "Phase II/III Study of SBRT for localized Spine Metastasis" yesterday (his choice) to try and shrink the tumor in his spine for pain.  The papers they gave out telling about it have some pretty scary sounding side effects.  I've read a lot about it, but I'm still just pretty unsetteled about the whole thing.  He is supposed to get shot with an hour of this SBRT radiation on Monday.  I'm pretty worried and so is my mom.  He really is already in bad shape.  All we (and he) wanted was to focus on QUALITY of life.  We just want him to feel better and for some of his pain to be relieved.

I just wondered if anyone here has been in this study, knows of anyone who has or has information on it.  Is it worth the risk?  

Thank you so much,

Dawn

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JerryfromFauq's picture
Replies 1
Last reply 8/23/2012 - 9:02am
Replies by: walesgirl

 The management of in-transit metastases is challenging, since the treatments and extent of disease vary greatly based on the number, depth, location, and distribution of lesions, and on their biological behavior. A number of different treatment options exist, but there is no level 1 evidence to guide clinical decision-making. Herein we present our institutional treatment algorithm, which allows for individualization based on the patient's presentation.

 

In-Transit Melanoma: An Individualized Approach

 
By Travis E. Grotz, MD1, Aaron S. Mansfield, MD2,3, Lisa A. Kottschade, CNP2,3, Lori A. Erickson, MD4, Lori A. Erickson, MD5, Svetomir N. Markovic, MD, PhD2,3, James W. Jakub, MD1 | December 30, 2011

I'm me, not a statistic. Praying to not be one for years yet.

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audgator's picture
Replies 8
Last reply 9/1/2012 - 9:18pm

...my onc was VERY pleased. I had a CT scan & MRI today a week after the end of the 2nd phase of my anti-PD1 trial at Moffitt. The MRI showed nothing in my brain just as before. We didn't get the radiologist's report before I left but my oncologist showed me the pictures on her computer. Some formerly big spots in my lungs & liver are now little spots and some formerly little spots were not visible.  So, yeah, I was very pleased too. Now on to the maintenance phase, infusion & scans every 3 months.    Dan

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jmmm's picture
Replies 11
Last reply 2/7/2013 - 2:03am
Replies by: JerryfromFauq, Anonymous, jmmm, Janner, Gene_S, washoegal

We are hoping some of the "researchers" on here can help us. My husband had a skin melanoma removed in 1997. He was in the military for 10+ years, spending 14 months in Iraq. With the exception of this time in Iraq, he has spent the majority of his time indoors ( he is an engineer). In 2011, he progressed to stage 4, multiple surgeries, Yervoy, and Zelboraf and right now, he is NED:). We are trying to find some sort of research article stating that the extreme sun exposure he had in Iraq could have contributed to his melanoma spreading. His melanoma specialist has already written a letter stating this fact, but we need some sort of research showing the same. We would be so appreciative of any help that can be offered.

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Gene_S's picture
Replies 1
Last reply 8/21/2012 - 7:19pm
Replies by: Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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chalknpens's picture
Replies 2
Last reply 8/22/2012 - 10:43am
Replies by: chalknpens, washoegal

I met with a dermatologist  yesterday at Dana Farber in Boston and reviewed my pathologies and surgeries. He reassured me that there is no need for an oncologist at this time. He said that as I've caught the melanoma early, and had it removed surgically, it is unlikely that it will spread to organs. His recommendation is that I continue to see the dermatologist and surgeon regularly to keep up with what may be recurring sites. He noted that the surgeries I've had are healing well.

He basically said that if I stay with the three month schedule of derm visits and surgeries as needed, each melanoma will be caught early enough to be excised completely, as has been done so far. To me, the schedule is daunting, as I am going this Friday to have the last of the first five sites' sutures removed. It is just three months from the beginning of the eight surgeries that these sites took. I will stick with it as long as I can. I wish I could share the doctors' sense of success with each surgery. This is better news than might have been. I'm not ungrateful, just overwhelmed.

I am not perfect, but I am enough.

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triciad's picture
Replies 1
Last reply 8/19/2012 - 2:00pm
Replies by: Anonymous

Does anyone know how to get your dendritic cell count checked?

I was just reading an article in the Journal of Clinical Oncology, and it mentioned that people who had a low dendritic cell count prior to taking Leukine had a better resrponse.  Maybe I should get that checked before starting this medication.  Any words of wisdom would be appreciated!

Thanks for your help!

Tricia

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JenJen12's picture
Replies 6
Last reply 8/18/2012 - 8:56pm

Hi all,

My name is Jen and i used to come on this site all the time. I still read posts on a weekly basis but unfortunately i now need help and advice.i was diagnosed stage 3a  from primary on left foot by toes 2.5 mm. I had 4 cells in my sentinel node  on left thigh and did a year of interferon which i handled just fine.  I just had my 3 year NED anniversary with a PET/CT that followed 2 weeks later. Unfortunately my onc called yesterday and said there was a hot spot on the right side of my body that had a high suv of 4.9. It is near my groin, bladder and colon. So this would move me to stage 4 :( They couldnt pin point it though because it did not show up on ct. It is very likely melanoma because of high suv. No other spots showed up in body. I had an MRI yesterday around 5 pm to further investigate. I have not heard back from my oncologist which i'm sure is bad. I leave for Europe tomorrow for two weeks. I was going to cancel but i am going to go still and deal with all of this when i get back.

What do you think my next step would be? I don't have the Braf mutation either. Surgery adn then IL-2 ? Yervoy. I handled interferon really easily. I am a 29 year old female that was diagnosed at 26. Any advice on what my next steps should be are greatly appreciated!

Thanks so much,

Jenjen 3a now probably 4

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triciad's picture
Replies 13
Last reply 5/6/2013 - 10:32am

Hi Everyone,

I had 2 more surgeries this summer because of intransits/satellites.  I will be restaged in a few weeks.  I'm not sure if I'll stay at 3C or move to 4...time will tell.  I think I will be doing a little radiation in the next few weeks.

I am supposedly NED (although no recent PET), so there is not much out there for treatment.  My one oncologist wants me to do Leukine.  My other oncologist says it's nothing more than snake oil and I should just watch and wait.  I am so confused!

If any of you have any information or experiences to share about Leukine, I would be truly grateful.  As always, I look to my MPIP family for real advice.

Thanking you in advance for any help you can offer.  Additionally, let's keep working together to kill the beast!

Tricia 

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/21/2012 - 2:39pm
Replies by: kristine, Anonymous, Harry in Fair Oaks, Jeff's Mom

I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area....Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr. Evrard had the scans performed(no mets anywhere) concurred with doctors and said I potentially have a good prognosisbased on her dealings with melanoma but I'd be better served by seeing an expert. Based on nisurance I saw Richards with a second opinion from Kaufman. Since there is no primary leison I'm lumped into a unique group of unknow primary. Now for the adivce from you, the valiant warriors out there. Not to create prejuidice against either doctor I will only say that one feels I'm stage 4 with uknown primary and require extensive scanning (3 months CT of Chest down to Pelvis & semi annual brain MRI). Risk of recurrence is low/medium.

 

The other feels that there possibly was no primary or my body had immune reaction to destroy it and I'm low risk for recurrence and require semi annual scan of chest & neck. Let me mention that both had my original path slides reviewd and both were suggestive of metastatic disease but didn't say metastatic. Dermal melanoma has been thrown around and I have researched it and it seems a possibility but again nothing is concrete and as I have realized anything is possible with this ugly disease...just doesn't seem fair. I don't post much here but I do follow and check to see how people are doing. I figured with all the good advice and support I see on here, someone can help me with making a choice in regards to which doctor's follow up plan do I go with. I'm scared, confused and lost. I just want to stay on top of this but not subject myself to scans etc that may be harmful in future.

 

Finally anyone familiar with hematocrit on blood test? Mine has been low on last 2 tests but not bad....not bad enough for doctors to be concerned. Anyone have any ideas on that?

 

Stay the course and fight the fight. You're some of the bravest people out there!!! God bless!!!

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 3
Last reply 9/9/2012 - 10:04am
Replies by: parkmk80, Janner, Anonymous

Hello:

In the last year I have had two excisions on two moles that were "above" moderate in changing (mild, moderate, melanoma). Were these going to change into melanoma or are they removed for precautionary reasons?My doc said that they may never change or they can change tomorrow.  Because I have had two like this, how high are my chances in getting melanoma? I have close to fifty moles and freckles, 15 dysplastic nevi. I have already taken of 13 and two need further excision. I'm trying to learn more about this. THank you for you time.

 

Rob

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/4/2014 - 5:35pm

My husband was diagnosed 2 years ago with stage 4 melanoma.  The tumor was in his lymph node under his right arm.  The PET scan only showed the cancer there. They've not been able to find where it started. After several months of intense radiation and chemo combined, they said there was nothing they more they could do. The tumor was too big for surgery.

He won't go back to the oncologist because he already was told there was nothing they could do. Surely there is a melanoma specialist in the State of Alabama who could find a treatment to help.  He can feel it growing and spreading.

Anybody have any suggestions?

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bikerwife's picture
Replies 2
Last reply 8/17/2012 - 7:21pm
Replies by: gabsound, Fen

Monday was an awful day. Went in at 715 for a 4 hour procedure for 2 mets turned into a 9 hour procedure for 6 mets. Dr said they got them and they were barley visible. Still I'm thinking its spreading everywhere mon was rough by tuesday we both were emotionally exhausted.

Wed morning we go in for kidney scan and chest cavity scan. We walk in dr office and dr high 5s Lynn. I'm still wondering so he shows me the scan from 3 months ago it was 9.8 cent and its glowing then he shows me new one it not glowingi say and dr says that's cause its gone. What's in chest cavity is almost gone also we shared lots of tears and hugs with our dr. This drug is awesome.

Gamma knife can be used again and they will continue to monitor brain closely but for know we smile. Lynn says he's slowly crawling back. He says keep fighting keep praying and keep beleiving.

Lots of love
Lynn husband to bikerwife

What God leads u to he will. Lead you through

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Replies by: audgator, LynnLuc, Theresa123, Anonymous, Tim--MRF, Linny

My oncologist told me to "look up" anti PD 1.  I was wondering if someone could explain it to me so I could understand it.   Like to a 2 year old or something;)   I need the information to make a decision about my care.

 

Thanks,

Terri

Stage 4

Every day is a miracle.

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MattF's picture
Replies 27
Last reply 8/28/2012 - 7:59pm
Replies by: MattF, Snickers60, Minnesota, LynnLuc, Erinmay22, Janner, Anonymous

I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.

I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain. 

Malignent Melanoma Tumor - Thickness unknown but over 1mm, Ulceration unknown, Mitotic Index 5/mm2, Clarks level IV-V, loosely Pathological staged as T2b

My dermatologist didn't think it was Melanoma so he did a shave biopsy rather than a punch. For this reason the pathologist couldn't get an accurate thickness, among other important pieces of information.

Now I'm just waiting on Surgical Oncology to call to make initial appointment.

My question is beyond brain tumor is it possible my melanoma has pread under my skin in a horizontal fashion creating headaches and sensitivity to touch?

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