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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Anonymous's picture
Replies 7
Last reply 12/11/2015 - 8:15am

Hi all, I have posted under different subject lines up to now but I do need to know if anybody can specifically comment on stomach mets. My Oncologist says this is the first case in her 30 years that she has come accross stomach mets. The tumor is quite large at +- 6 cm x 2 cm in the upper region of the stomach.

I have yet to see her to discuss treatment going forward. In the meantime I am having continious black stools and a fair amount of discomforting pain in the stomach region.

There is talk of total resection and reconstruction surgery - has anybody had this and is it effective?

What other treatment is available?

Any advice / input will really be appreciated.

Regards

Wally from South Africa

 

One day at a time.

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Just thought I would let everyone know who might need it that my doc had me take magnesium citrate to clear up my constipation. It worked. Took about 8 hours but for just the first activity of it I stopped up the toilet. Fortunately I had another bathroom for the second activity of it. That was Friday night and my last bm had been Monday morning.

Well due to the opied induced constipation I couldn't eat much because there was no room and my stomach was all messed up. So I kept getting even weaker. After the clear out my stomach is still awful so I haven't been able to eat much so even weaker.

Now I can hardly stand let alone walk across the room. So I had to cancel the Houston trip tomorrow and started with the message to my local doc to do the scans here. That really sucks. I was hoping the Houston doc would have a good plan b for me.  Supposedly they will share the scans but I have doubts what they will come up with. I also wanted to know what the Houston surgeon had to say about my spine.

So like a guy posted a little while ago about giving up. I'm finally to my breaking point. I feel like crap. I'm very weak. I can barely walk a little. These opioids and pain are making the normal sweet me kind of terrible to be around but my parents still love me. This abraxane is starting to tear me up with the throwing up and stuff. I'm able to feel new pains almost every day and even a new back bulge I confirmed with my doc. The ldh dropped nice after the first dose then went back up. If I had hope things would get better I might be able to continue but like dad says I'm in misery every day. So I'm going to hang on to see the new Star Wars which will be 30 months for me fighting this disease then we'll see if it's time for this warrior to call the battle well fought but done. I was hoping I could get the pain pills changed to marijuana or something better thst might go a long way helping me but I'm not getting anywhere. I need to look into those other pain things yuns said.

Sorry for such a negative post but it is what it is. Of course other people have it worse. Like Shane in Chicago. But at least he has stuff there doc's are willing to try. My local doc said he could do tvec to the new back bulge but not the huge shoulder tumor or others. Plus he had doubts if he could get insurance to approve it with keytruda. So I just don't have hope anymore or even the hope that hope is coming. So like a lady just posted about her brother diagnosed at age 45. Yep i was diagnosed at 45 too. I'm 48 now too. It's just so hard to fight and having fought it almost 30 months with the whole time new stuff showing up is getting too much to bear. I know I've posted positive thoughts of keep fighting and what I've been through having to eat a half a bite at a time. So what if the next half bite was ten minutes later just keep at it. Or taking half a step then another. I meant them at the time. Now I'm a very tired warrior with no hope anymore. Sorry if I'm letting anyone down.

Artie

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fallingstars's picture
Replies 15
Last reply 12/11/2015 - 1:42am

Hi people, I was diagnosed with stage 1A melanoma, 0.4mm, no ulceration, no angiovascular or lymphvascular invasion, mitosis less than 1/mm, clear margins already after the basic excision (no less than 1,1 mm) two weeks ago. Tomorrow, I will undergo WLE. During the five weeks I was waiting for the excision (yes, five weeks!), I was going through hell already knowing that it will probably be bad, but not cetain how bad exactly... After the diagnosis, I was on one hand oddly relieved it is thin, but on the other hand, I am having hard times coping with the diagnosis. There are better times when I have a lot to do and do not worry that much, and then there are worse days (like today) when I come back to this foru.m and just worry about the future. I would love to stay positive all the time as I do have the probably irrational fear that for every second of not believing it will strike back sometime in the future. All these stories of recurrence here...:-( However, I am thankful for this forum cause it gave me a big insight and hope. I know that I was pretty lucky catching it earlier than later, but it still changed my life for ever... I was always an optimist, but now I just cannot find myslef in the right place...:-( I can turn from a laughing girl to a sobbing hypochondriac (yes, I constantly touch my lymph nodes, observe my bones, and revealute my health status which makes me of course not feeling well at all) in a second nowadays...my boyfriend should be given an award for patience, actually :-)

However, Inhave several questions I would like to ask you guys:

1. I plan to change the derm after the WLE cause I am not entitely convinced he's the best... What is the best recommended procedure with my stage after WLE? I already spoke to a melanoma specialist (one of the best in our country) and he was very kind (opposed to my derm) and told me the recommended procedure for my stage after the WLE are dermatologic check-ups twice a year. Is this correct? My derm was talking about x-rays and ultrasounds (but no SLNB, which I find very odd... He just told me that's way they do it here), the specialist said he considered it unneccessary with my pathology report and that he would opt for letting me live without this fear from scan outcomes (unless something is wrong, of course). Is it Ok to just go wit the regular derm checks? I'd from neurosis with the x-rays...

2. I am 32 year old girl without kinds yet. I have a good career, love my job, but this diagnosis changed my perspective and I do not want to wait. I read research studies that there is no proven connection between melanoma and pregnancy, and some articles and doctor statements that it is OK not wait with pregnancy in my stage. Is this true? 

 

Last but not least, sorry for my English - I am from the Czech Republic, so it may not be prefect.

Thanks in advance for your support guys, some of the stories here are petrifying, but some of the NED stories here are so full of hope I cannot even tell how it can help. Luck to everyone of us!

 

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Janner's picture
Replies 3
Last reply 12/10/2015 - 11:17pm
Replies by: kylez, Anonymous, Bubbles

I liked this article - gives a good analogy on how the body works and how cancer metabolizes sugar (layman terms).

 

http://www.cancerdietitian.com/2015/08/why-you-should-stop-saying-sugar-...

http://www.MelanomaResources.info

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IvanaDim's picture
Replies 6
Last reply 12/10/2015 - 4:43pm
Replies by: IvanaDim, tschmith, BrianP, Fen

Dear melanoma colleagues... I've been reading and learning so much from u all for months now, and you are amazing source of info and hope... Now this is my story..any advice is more than helpfull

My father (59 years old) has metastatic melanoma, primary on rectum, spread to liver. The doctors recommended urgent surgery with which they removed the rectum and the lymph nodes that were affected with cancer cells. He has stoma bag now. The surgery was on July 2015.

BRAF and C-KIT tests are negative.

We are from Macedonia - small country on the Balkan with list of cancer drugs not updated for 8 years no, so immunoterapies are not available even if you can buy them out of your pocket! :-(

We managed to find immunotherapy keytruda in Greece (near my country 2h by car) and started keytruda in August. Since the immunotherapy is very individual and slow process, the oncologist can not guarantee anything at this stage. In october, before he takes the fourth dose he felt chest pain and the oncologist suggested CT scan to revise the situation. Unfortuntelly the liver metastasis seemed to be bigger and we did 2 chemoembolizations now. Last week he took the 6th dose of keytruda combined with DTIC.. Next is another chemoembolization. The dr is stopping with keytruda now..proceeding DTIC.

I really need advice what to do next, all these drugs cost a lot of bank loans and selling assets so far, but it is all worth if it helps. I cant believe that there are no more options.

Can anyone recomend some clinical trial that might be appropriate?

Sorry for the long post....i had to share my pain with people that really understand..My father is my all..

God bless you all...thank you for any advice in advance

Ivana

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jennunicorn's picture
Replies 35
Last reply 12/10/2015 - 1:36pm

Hey all,

I am 28 years old with stage 3b Melanoma. I have just talked with my oncologist today about treatment options, and since there are no open clinical trials for my stage at the moment, the 2 options were watch and wait or Yervoy. I opted to do Yervoy because the anxiety of the watch and wait would drive me nuts. 

I know everyone has different reactions and experiences with their treatment, but I am wondering if anyone else out there that is currently on or has done the Yervoy 10mg/kg treatment has any advice?

I've read that there are usually some pretty bad stomach and intestinal side effects. Are there certain foods that seem to help people vs. foods to avoid when doing treatment? How do you typically feel during and right after an infusion?

This is all kind of scary and weird for me, but I am a healthy young person besides this whole Melanoma thing. I'm hopeful that I will get through this treatment and keep my fingers and toes crossed for no recurrences. 

Thanks,

Jenn

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/10/2015 - 12:14pm

Here's my story. Diagnosed with stage 3 melanoma in 2011. No treatments, just surgery. 2013, 1 met found in lung and surgically removed. No treatment.  Being monitored via CT's, PET's.  Recent PET showed activity - biopsy of small tumor confirmed melanoma. Believes other areas that 'lit up' on PET most likely means progression of disease. Doc wants to start trial, but reading the consent scares me to death. 

Without biopsies of other areas that lit up, how do I trust that treatment or a clinical trial is the best route?  

Could this small tumor be the only one in my body?  Having a difficult time with this decision. 2 reoccurrences in 5 years.....how do I know that the trial will not cause progression of disease or make me sick (I feel good and have felt the same as I did before diagnosis and I don't want to do somethimg that may change that)

Any advice, information or support would be so much appreciated.  

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Cmako44's picture
Replies 4
Last reply 12/10/2015 - 11:36am

Does anyone out there have mets in spine, ribs pelvis, femur, etc? My sister is 31 and just recently diagnosed with stage IV melanoma in her spine, ribs, pelvis area, and a couple other places.

She is seeing a specialist (Dr Luke) at Univ. of Chicago and getting on a plan within the next couple weeks. I'm wondering if anyone can share stories of having similar mets in only bones or someone that may have seen Dr. Luke and has any treatment stories.

Ever since her diagnoses (which caught our family off guard flipping our world upside down) I have been trying to do research on drugs and trials. I am so scared and she is too, however we are trying to remain as positive as we can. Hopefully someone out there can relate to her that can give me any feedback..someone who may possibly have a success story or be NED who was stage IV with cancer in the bones. I have read that it is harder to treat in the bones as well which I do not know if that is true or not. I would give anything and everything for this to go away and her to be NED.

God Bless. 

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-f7-forlife's picture
Replies 2
Last reply 12/10/2015 - 10:16am
Replies by: Janner, -f7-forlife

Hey everyone. First-time poster. I won't lie, I feel a little guilty, albeit selfish, for making my first post a call for help. I also feel very uncomfortable about this because I have never spoken about it with anyone. It has remained a secretive issue, one that has always dented my self-image.

I've always had more moles than the average person. They're all over me. They range in size, but none have ever been very concerning. They've typically followed the ABCDE's.

More recently, however, in the past few years, more have been popping up all over me. There are a bunch of small red ones in every location of my body. There are enough now to where it has become a serious concern. I won't take my shirt off around anyone- it has damaged my social life and I don't feel comfortable discussing it with anyone close.

The one time I made mention of it was when one of my friends asked me why I always had bandages on my arms and legs. I told him I was using ACV to eat away some pesky moles and he told me I was insane. He did not react supportingly at all to my insecurities and was kind of freaked out by it. I know this isn't a good idea because it can hide malignant melanoma, but when you're so down in the dumps about it and don't have the money for professional care, what else are you going to do?

It's so bad, I haven't had a lay in over three years. Any time a lass comes along, I push her away out of fear that she'll be disgusted once I take my shirt off. It's that bad. Be as it may, however, I can live with a poor sight of a body because I can still be ambitious and try accomplishing things in life. What I can't live with is a hidden melanoma, because I know melanoma is a swift killer.

I am 25 years old, and unfortunately, the unlucky one of the family to be born with a fair complexion. On summer outings, the focus was always on me to wear sunscreen, and a whole lot of it, too. I always believed if I just tanned up enough, that I could do away with the sunscreen and join my peers without fear on the beach.

Sadly, life doesn't work this way. I've endured several extreme burns that have left me in agonizing, itching pain. When I thought I was some beach-hunk, I ended up paying for it for the next week by keeling up next to a fan to keep my burning skin cool so the itch wasn't so intense.

I believe I am now paying the price for my ignorance toward proper skin care in the sun.

Maybe all of this introduction could have been skipped. I'll now explain why I'm here.

Three years ago, a mole developed on my chest, one that isn't like the rest. It is not symmetrical. There is a light shade on one side, but the other side is darker. Here is a picture of it. I know that I will be told to see a dermatologist if I'm concerned (working on that), but I would like to see what you guys think.

This mole hasn't changed, at least from what I can remember, but after reading more about melanoma and seeing sample malignant images, some have come across looking exactly like the one I have.

Here it is: http://i67.tinypic.com/2zznhq1.jpg

This is located on my left pectoral, slightly below my collar bone. At the bottom center of the image (or center of my chest) is one of those red moles I was telling you about. They are all over my body and have been rapidly appearing over the past few years.

It doesn't ever itch or bleed or any of that, but when I saw sample assymetrical images, I started to panick. I know that melanoma can spread rapidly, and if this is malignant, I may already be screwed because of how long it's been there (which may explain the rapid formations everywhere else. Who knows, I'm no doc).

I was just curious to see what someone else thought before I start collecting my things to see a dermatologist. Life is short enough already, I would rather have some extra time to go out and do things I love, instead of living in constant fear. Who wouldn't, though?

 

Thank you for bearing with me through this introduction. I am so sorry for being selfish and making my first post a call for help. I really didn't know what else to do, though. Any opinions or advice is graciously welcomed.

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ChristianDude1990's picture
Replies 1
Last reply 12/10/2015 - 10:05am
Replies by: Janner

Hi I had 2 moles removed, one behind my ear and one on my leg. Please can someone explain in lamens terms what these results mean?

 

MACROSCOPY

A hairy excision of skin, 0.4cn.

An excision of skin, 0.9 x 0.7cm. The epidermis contained a pigmented lesion, O . 6cm.

MACROSCOPIC EXAMINATION PERFORMED BY DR E RAAN MICROSCOPY

SPSCIMZN 1 :

The excisional biopsy displays skin with pigmented intradermal naevus. The epidermis displays irregular acanthosis. The dermis contains nests of pigmented naevus cells and single naevus cells descending the underlying dermis with

maturation. No dysplasia or neoplastic changes are present.

SP3CIMSN 2 :

The excisional biopsy displays skin with architecture distorted pigmented compound naevus

The epidermis displays irregular acanthosis. Located at the epidermal/ dermal junction are single pigmented naevas cells and nests of naevus cells

representing junctional activity. The papillary dermis displays lamellar and

eosinophilic fibroplasia. The dermis contains pigmented naevus cells arranged in nests and single lying. Free lying melanophages are present in the dermis.

No atypical mitoses or pagetoid infiltration of the epidermis is identified.

The features are consistent with architecture distorted pigmented compound

naevus .

DIAGNOSIS

SKIN FROM RIGHT SKIN ?ROM LET LOWER LEG

PIGMENTED NAEVUS.

ARCHIECTURE DISTORTED COMPOUND PIGWNED NABV3S .

 

My doctor just said the one on my leg was "weird" but there is no cancer on either mole. What does he mean by weird and what does this report actually say?

 

Thanks in advance!

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jahendry12's picture
Replies 27
Last reply 12/10/2015 - 8:32am

Hi All - I'm friends with Artie on fb and today he posted that he is now in the hospital in ICU and is very weak. 

Just wanted everyone to say a prayer for him. 

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nc1983's picture
Replies 6
Last reply 12/9/2015 - 11:08pm

Hello everyone,

What an amazing community going on here. So glad I found this. 

I searched the forums to try and save anyone from typing the same thing again, but I couldn't find an answer. 

My dad is 60, stage IV and is currently on his 2nd round of Yervoy/Opdivo. His Dr. gave him a half dose of each for the first round to test his body if he could handle it. He was bed ridden when he took it but a week later we were doing short walks. It was amazing. All the specific targeted pains went away. But a week after that things began to crash again. He got his next dose of Opdivo and didnt seem to do much, but then when he got his first full dose of Yervoy, within HOURS he seemed to be doing better. 

Despite the return of his mobility, the pain is still pretty bad, Oxycontin and Vicodin barely get him through the day. And also his groin lymphnodes are getting sore, and a lump where they removed a lymphnode on his shoulder is getting larger, as well as possibly a new one on his neck. 

His doctor wants to wait to get through these innitial four doses before considering any new scans. 

My question to those of you who have been through this, specifically with aggresive tumor growths, did it seem to get worse before it got better? Do you think it's wierd his doctor doesn't want to biopsy these growth areas and consider surgery? Also, we are told he can only do 4 doses of the combo treatmnet before switching to Opdivo only. Has anyone done the combo longer?

Naturally we are desperate for anything positive. Because seeing new pains/growths DURING treatment of course makes us worried it isn't working. Any thoughts or experiences from those who've had success with this treatment would be greatly appreciated. Thank you!!

 

 

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David21's picture
Replies 10
Last reply 12/9/2015 - 10:06pm

Hello, my name is David from Ottawa, Canada  I was diagnosed with melanoma on October 7 from a scrape biopsy on September 22. The tumor was 4.9 mm and ulcerated from a 2 cm x 2cm x0.5 cm , (size of quarter) looked like a blister by my ankle. I had surgery on November 24 with 2 cm wide excision on margins, sentinel lymph node biopsy and skin graft. All the biopsies,  3 lymph nodes and wide margins were negative.  I am currently melanoma free that can be seen, but high risk. Also a CT scan was taken on Nov 4, which was negative. 

Questions for my stage 2c diagnosed melanoma with survial rate approximately 50%

1. I will need to make a decision on interferon. Apparently it only increases the survial rate by 6% for thick melanoma  ( >4mm) and there are lots of side effects. I am an endurance athlete.  Is it worth the pain ?

2. Since I am node negative,  I cannot receive clinical trials,  which increase survivability by 50%.  Should I wait or push oncologist since it is thick melanoma? 

3. Final option is to have a CT scan done every 6 months and focus on being strong through my sports and diet to fight any future cancer. Any feedback on waiting ?

 

Thanks, 

 

David 

 

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Bearsworth's picture
Replies 5
Last reply 12/9/2015 - 7:04pm
Replies by: Bearsworth, Gwenmorgan, kylez, arthurjedi007, Anonymous

Image tried just about everything. I am to the point I can't sleep at night. This itching is driving me crazy. It's all on the inside of my arms, my neck and all over my back. I have tried Benadryl, Zyrtec and all the creams. The creams are a very temporary fix. Has anybody had any luck managing this?

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ndfrc's picture
Replies 6
Last reply 12/9/2015 - 6:22pm
Replies by: BrianP, Anonymous, Jubes, ndfrc, Patina

Hi everyone,   so my wife(42) who has been diaged with stage 4 mets stemming from breast cancer about 4-5 yrs ago now, went thru the chemo, radiation, under arm lymph nodes removal, breast lumpectomy, etc, things seem to be okay from that perspective, now in the past month or so now she has melanoma, a good sized section was taken from her shoulder/arm area(stg2), that took 2 times to get it clean, a week ago she had more spots 'shaved' of her back, at that time a swollen lymph node was detected on her elbow(same arm) which needs to be removed, going to the surgeons on fri to discuss this procedure. So now she is beside herself.. reading so much on the internet(never a good thing, cant get her to not go there), melanoma with lymph node invovlement certainly doesnt sound entry level, Its been challenging at best to support in whatever way I can, but besides just being there for her, it is the most frustrating thing to wactch what is happening and not being able to do a damn thing about it, and now with melanoma.. where is this going??

I know we will find out more in a couple days, and i know there are many out there that are in the same boat, but geez... work, kids, , just everything, why isnt this happening to me instead of her?

thanks for listening, i guess i feel better.. i needed to regain focus.

-keith

 

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