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
Replies 4
Last reply 5/17/2014 - 3:01pm

Anyone go surgical route alone and get long term success (say, 5 years NED)? If you went surgical only route, what has been your experience?

I'm stage III - now NED for a week now after surgery. Since there are so many promissing treatments coming down the pipeline, I'm considering making a gamble and waiting for a few years until better treatments are more available. How big of a gamble would this be?

Statistically speaking, what how long does it take for the melanoma to return?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 5/27/2014 - 12:48am

Hi, I feel bad posting this because I'm sure many people here are dealing with so much worse and people will think I'm overreacting but I have problems with anxiety and hypochondria and I am just living with constant worry, losing sleep and having trouble eating. I know that the only way for me to feel better is if I get a second opinion. I am just going to throw all of my fears out there, some of which are probably irrational. Please someone tell me that they are.

I'm a 23 year old male and have an atypical mole on the left side of my abdomen. It pretty much matches all of the characteristics of what all the websites say are melanoma moles. It is asymmetrical, the borders are not well defined, it has about 3 different shades of brown and is about 9mm in diameter
I had no idea that moles had the potential to be so dangerous up until about 10 days ago when my doctor noticed this mole and said it should be removed and then I did research about it after the appointment. And ever since then I've been terrified.
The only thing that I take some comfort in is that this mole is not new and I've had for as long as I can remember, maybe since birth. Also, I don't believe that it has changed much if it all. Does this dismiss melanoma? Can unchanging moles still be malignant? Is change the most important factor? How fast would it change?

Since becoming aware of melanoma, I have checked all over my body and I have found some other asymmetrical but single-colored smaller moles mostly on my forearms but one small odd rectangular one about 4mm in length on my upper-right stomach. Also, since I read about browm lines in finger/toe nails being a sign of melanoma, I seem to have a faint brown line in my right foot's pinky toenail... Is any of this concerning? Does melanoma cause more moles like these to pop up?
Also, the reason my doctor even saw the mole was because I was seeing him due to having problems with blood in my stool. Now I am worried that melanoma has spread to my colon to cause this. However, I've been passing this blood for almost 2 years and hasn't really gotten worse. If it were a tumor wouldn't it have gotten worse by now?
Finally, my last worry is that about six months ago I've been feeling pretty depersonalized (which I've always thought was stress related) and am worried, of course, that melanoma had spread to my brain. How fast would symptoms get worse if melanoma spreads to some other organ?

I believe I am having this mole removed sometime soon as well as a colonoscopy but waiting is so hard for me.

Thank you.

Login or register to post replies.

By Deane Alban

Posted Thursday, May 15, 2014 at 12:34pm EDT

Keywords: sun exposurevitamin dvitamin d deficiency

Now that the warmer weather is here you can get outside and replenish your much-needed stores of vitamin D, the sunshine vitamin.

“20 minutes twice a week” is the usual rule of thumb for getting enough sun to keep your vitamin D levels up. But in real life it’s much more complicated than that. We’ll examine some of the surprising reasons this is so.

But first let’s take a look at why vitamin D is critical to your health.

Vitamin D — What’s It Good For?

Vitamin D is technically not a vitamin, it’s a pre-hormone that’s created when your skin is exposed to sunlight. It’s the only human nutrient that’s created from sunlight. Just like a plant. ;-)

Vitamin D is close to being nature’s cure-all. It’s a fantastic immune system booster. It’s been found to be protective against cancer, diabetes, heart disease, high blood pressure, osteoporosis, and Alzheimer’s.

Studies have shown it can lift your mood, banish depression, improve memory, and increase problem-solving ability. Inadequate levels may contribute to the blues many people feel in the winter.

Surprising Factors Affect Vitamin D Formation

It’s estimated that 80-90% of adults in North America are vitamin D deficient. Here are five surprising factors that affect your ability to manufacture vitamin D.

1. Sunscreen

If you are outside in the sun but wearing sunscreen, you won’t manufacture much vitamin D. I live in the land of perpetual sunshine – southern Arizona – and am outside a lot. So I was shocked to learn I was seriously vitamin D deficient! I know now that’s because I wore sunscreen most of the time.

2. Latitude

If you live in the US draw a line from Los Angeles to Atlanta. If you live north of this line, the sun’s rays are too weak to trigger vitamin D production most of the year except during the summer.

Time for some fun science! Here’s a way to tell if the sun’s rays are strong enough to stimulate vitamin D formation:

Go outside, stand in the sun, and look at your shadow. The more direct the sun’s rays are, the shorter your shadow will be. A good rule of thumb is that if your shadow is your height or longer, the sun’s rays strike at too great an angle to promote vitamin D formation.

3. Skin Color

Our different skin tones evolved depending on how much sunshine our ancestors were exposed to. Light-skinned people from very northern areas evolved to utilize sunshine more efficiently. If you have dark skin, you need even more sun exposure to get adequate exposure levels, up to one hour a day.

4. UV Index

Just because the sun is shining and you’re in it, doesn’t mean you’re producing vitamin D! UV index is affected by season, time of day, cloud cover, air pollution, altitude, and even your surrounding surface. Whether you’re outside in the snow, at the beach, or picnicking on a lawn can affect how much UV radiation is reflected back at you by up to 40 fold.

It is only when the UV index is greater than 3 that the needed UVB wavelengths are present in sufficient amounts. Check a site like Weather.com to find your current local UV index before you take your next vitamin D “sun bath”. There are also some apps that report your local UV index.

5. Bathing

It takes up to 48 hours for your skin to fully absorb all of the vitamin D it makes in the sunshine. About 50% of the total formation occurs within the first few hours so try to hold off showering at least until then. Otherwise your new vitamin D will literally go down the drain.

Here’s a link to a calculator that takes most of these factors – latitude, skin color, altitude, sky conditions and such – into account. It estimates how many minutes of sun exposure you need to produce 25 mcg (the equivalent of 1,000 International Units) of vitamin D. You might not know your latitude and altitude off the top of your head but you can google it.

Know Your Levels, Supplement Accordingly

Vitamin D deficiency symptoms — muscle pain, weak bones, low energy, lowered immunity, depression, mood swings, and sleep problems — can be mistaken for many other health problems.

The only way to know for sure if you need vitamin D supplementation is to have a blood test to check your 25-hydroxy level. You can see your doctor or you can order a vitamin D test onlineOnline self-testing is a great way to save money, retain your privacy, and have more control over your health.

If your level is found to be low and you can’t get enough sun exposure, you need to supplement.

There are five forms of vitamin D – D1 through D5. Most experts agree the most effective form is D3.

Some foods, like milk, are fortified with the D2 form and mushrooms naturally contain D2, but this form is not very well utilized.

By far the best “food source” of D3 is cod liver oil. Not that most of us would call this “food”!  Fatty fish like salmon and sardines contain some D3, but not nearly as much.

When you choose a vitamin D supplement be sure to buy from a company you can trust. Last year a study on 55 brands of vitamin D supplements found they contained between 9% – 146% of what was listed on the label!

For most of the country, sunbathing days will soon be here. Keep these tips in mind to benefit from the sun exposure you receive. Remember the “20 minutes twice a week” rule of thumb rarely holds true. If you suspect you’re deficient get tested to know for sure.

ABOUT THE AUTHOR:

Deane Alban holds a bachelor’s degree in biology and has taught and written on a wide variety of natural health topics for over 20 years. She teaches the best ways to stay mentally sharp for life at her website BeBrainFit.com. Learn how to protect your brain and optimize your brainpower – sign up for her free e-course 21 Days to a Brighter Brain here.

 

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

Login or register to post replies.

My mother was diagnosed with Stage III Mestatic Melanoma last April (2013).  It was originally found in her lymph nodes in her upper right groin area.  They removed 4 lymph nodes from this area last April.  She had 5 radiation treatments following this surgery.  She was then accepted into the Yervoy Clinical trail at the 3mg level.  She started those infusions at the end of last summer but was only able to have 4 of them; the last one was administered at the end of last October.  Her doctor stopped her Yervoy treatments due to the severe joint pain she developed; it was debilating.  She has also experienced severe itching.  She has been on Prednisone since November, starting with a strong dose, down to a maintenance dose now.  Fortunately she never experienced any colitis or digestive issues, but had 1 mass removed from her right breast last October and another one in the same area this past March.  She now has a 2+ inch spot on her liver she will have vascular surgery on in the upcoming weeks.

When she is not on the Prednisone the joint pain and itching returns.

Has anyone else suffered the debilitating joint pain from this treatment, and if so, how long did it last, did it eventaully go away once the Yervoy was out?  She is terrified it will effect her for the rest of her life. 

Thank you!

Login or register to post replies.

braunerk's picture
Replies 3
Last reply 5/21/2014 - 10:39am

Well a little history April 2007 stage 2a with me on left foot on arch/bottom of foot April 2014 small subq met on left leg stage 3b May 2014 I ended up in hospital with septic shock and was able to get them to image my abdomen and they found a mass 7.5 cm by 6.6 cm and involvement with lymph nodes so now stage 4. Also got them to scan the brain and no involvement at this time. They have sent tissue samples out for gene testing and them will decide on treatment. Any suggestions on which treatment would be best. Still can't believe what has happened. I am seeing a mel specialist in Tucson AZ so got that covered. But any other suggestions would be helpful

Login or register to post replies.

DUSTILANE's picture
Replies 4
Last reply 5/19/2014 - 8:21am
Replies by: DUSTILANE, Sandy11, Anonymous

My husband has finished his 4 Ippy treatmens.  The scan that were taken the first of the month showed there had been a small decrease in the tumor under his right arm.  Also the spots that had been seen on his lungs on the prior CT scan had decreased from 1 cm & .8 cem to .5 centimeter.

 

This is good news...however, I am not seeing any improvement otherwise in my husband.  He is still tired all the time, sleeps all the time, has no appetite, continues to lose weight and has lost interest in just about everything.  He doesn't want to go anywhere or do anything.

 

Has anyone else experienced this type issue?

 

Any suggestions or ideas?

 

We go back to MDA the 26th of May for the next set of CT scans and a MRI of the tumor under his arm to see if it can possibly be surgically removed now.

 

 

Dustilane

Login or register to post replies.

MixtaJones's picture
Replies 8
Last reply 5/21/2014 - 9:41am
Replies by: MixtaJones, JerryfromFauq, hbecker, Anonymous, Teochasse

I am trying to find some information in regards to how fast melanoma spreads in the body. I cannot find much online so figured I would turn to people with experience.

I first had a mole removed in July or 2013 that was a superficial spreading melanoma .97mm deep. My general practitioner removed it a biopsied and found it was melignet but since the margins were clear he said I was fine. No more tests. 8 month later I found a lump under my arm and was diagnosed with early stage 4 shorty after. My big question is what stage I was at when the mole was removed? I know it had already started to spread I have no clue how to figure out how much worse my situation has become becasue the doctor didn't do any further testing. Does any have any input they can give me?

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

Login or register to post replies.

SamC 23's picture
Replies 1
Last reply 5/19/2014 - 7:37am
Replies by: Fen

Tomorrow I have my consultation with my Thoracic surgeon. I'm interested yet nervous for what will be said to me... I've been keeping busy and try not to worry too much. No reason to get too worked up until the doctors know what exactly is on my lung.

Login or register to post replies.

Short review:

husband 

July 2010 dysplastic nevi left calf

derm exams every 6 months

July 2013 bump lower left calf and enlarged left groin lymph node

August 2013 diagnosed stage 3c, groin lymphadenectomy 

October 2013 - December 2013 ipi Tx 4 cycles total (colitis treated with prednisone and 2 doses remicade)

Ringing in ears. brain MRI clear. February 2014

CT clear jan 2014

April 2014 PET show high SUVs calf , groin and stomach 

April 2014 Endoscopy with biopsy reveals 3.5 cm lesion in stomach that is melanoma

Meet with teams at mskcc and penn. Decide on BMS anti-pd1 and KIR trial.  To be begin this weds may 21st

My Question?

if husband fails trial, would he be eligible for expanded access MK3475? If you were ever on a Merck 3475 trial that would exclude you but would a BMS trial exclude you?

Lastly, when do you think the FDA will approved Anti pd 1?

 

thanks in advance. Anxious to get treatment moving but don't want to make the wrong move. 

 

 

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 5/19/2014 - 8:57am
Replies by: Anonymous

By a News Reporter-Staff News Editor at Cancer Weekly -- In a groundbreaking effort, 3,500 of the country's top high school students will build the world's largest wiki on melanoma research -- and work toward finding that needle in a haystack to cure melanoma (see also National Academy of Future Physicians and Medical Scientists).

The effort is led by www.SaveJordan.org ,which will use crowdsourcing to drive user-generated content related to melanoma cancer research to a wiki site. "The idea is to bypass mainstream medicine and medical research and compile fresh ideas," said Jordan Guernsey, the 29-year-old father of two and Stage IV cancer survivor who is the force behind SaveJordan. …

=====================================

http://www.highbeam.com/doc/1G1-367490442.html

 

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

Login or register to post replies.

camping_mama's picture
Replies 15
Last reply 5/21/2014 - 9:33pm

Hi, my 7 year old daughter was diagnosed with melanoma about three weeks ago.  The tumor is a 1b. Thankfully it was small (.47 mm) but had a mitotic rate of 1 and vertical growth so they deemed it a "b" not an "a".

She underwent her wide excision and SLNB on friday and we find out results next week.

I know there are probably only a few folks on here with pediactric melanoma diagnoses.  Can anyone point me to an online support or information group for parents?  I saw the reference from 2 months ago for littlestwarriorspot.com, but the post also mentioned that there was another group.  If anyone has the info for that group and would pass it along I would be very grateful.  Thank you!!

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

Login or register to post replies.

My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

Login or register to post replies.

GrammyM's picture
Replies 8
Last reply 5/21/2014 - 3:30pm

My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

Login or register to post replies.

Ninniditti's picture
Replies 2
Last reply 5/22/2014 - 4:05am
Replies by: Ninniditti, BrianP

Hi!  I had my first ipi-infusion about two weeks ago. After four days I got ichting, fever and was very tired. Livertests taken were bad so I ended up in hospital where I still am, now one week. I immediatly got cortisol infusions whichte took care of the itching and fever but not livervalues and tirednes. Now the doctors search for reasons to the liverinflammation and treatment. Virus is tested negative so the only reason has to be ip side effects. Biopsi is taken but no results yet. Has someone here gone trough the same and have any advices?

Inger

Login or register to post replies.

Pages