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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Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2014 - 8:07am
Replies by: DUSTILANE, Socks

My Dad has been recently diagnosed with metastatic prostatic adenocarcinoma. I know this is off topic, I am a stage IV 4 melanoma survivor. I'm just worried he Is not in the right place being cared for by specialists in advanced prostate cancer. Any words of advice out there for a very concerned daughter?

Be Brave

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Can cancer be stopped in its tracks? Even cured? The cancer documentary event of the year has now arrived
(NaturalNews) The most important cancer documentary series ever produced -- what I'm calling the "Healing event of the year!" -- has now arrived. It's called The Truth About Cancer... More info at

http://www.naturalnews.com/z045253_cancer_documentary_prevention_natural_cures.html
 

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

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Hey Group- My wife was diagnosed with Melanoma in April. Breslow was 1.2mm, mitonic rate <1.mm2, mole on left shoulder blade. We were told at UAB that they found literally one cell in a sentinel lymph node and recommended that we watch and observe. We went to MD Anderson for a second opinion. They confirmed the one cell to be Melanoma, but said that standard procedure is to remove the remaining axillary nodes, regardless of how small the count is. They are not making us, but are strongly recommending we have the second surgery. They feel this gives her the best chance of it not returning. Tough call, but we are scheduled for surgery out there on June 11. Any advice on the lymph node dissection? Said it is similar to what breast cancer patients have, but not quite as bad due to the area not being exposed to radiation or chemotherapy and they get additional lymph nodes with breast cancer patients up around the collar bone. My wife will not have that, but she will have a drain for about a month. I have never dreaded something so much yet ready for it to be over with at the same time. If she doesn't have the surgery, MD Anderson would scan the lymph nodes every 3 months with an ultra sound. If/when it showed up, then they would take the lymph nodes out, but we would at that point probably be further down the line than we wanted to be. Everyone we have talked to except UAB, is against the"watch and observe" philosophy and say attack this stuff aggressively at the beginning. In other words, get the rest of those lymph nodes out. This is basically the MSLT -II clinical trial without being enrolled in it.

Thoughts and/or advice?

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/23/2014 - 3:37pm
Replies by: kylez, tschmith, BrianP

I'm not sure I've ever seen pictures or video of Dr. Rosenberg before. Meet him... kind of, on this TV news clip from a Washington D.C. station. 

http://www.wusa9.com/story/news/health/health-alert/2014/05/22/immunotherapy-nih-cancer-health-alert/9436859/

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/24/2014 - 3:37pm
Replies by: RJoeyB, Anonymous, sofistef, cbs805

After receiving the devastating news about the head of the humerus met. I went today and met with the radiation oncologist and they will decide if they will treat the met with cyber knife of with regular radiation.

This is completely new to me and I don't know what to expect from either of them. Did anyone have similar experiences?

Also they scheduled me for a PET CT next week,  and I'm terrified what that will might show!!! It's just plain horror movie, going from almost NED to having this big tumor in a matter of weeks. I strongly believe that this monster was hiding in my shoulder for a longer time and the CT just failed to detect it.

Prayers

Dana

 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/24/2014 - 8:48pm
Replies by: Ed Williams, ecc26, Anonymous, arthurjedi007, Hstevens0072

Been on vem 17 weeks and told that body mets are stable but new mets in brain and that I need wbr due to their number. I now just feel like a failure clearly I can't respond to my first treatment so things like ipi and Pd1 will be a waste of time. Would also like the wbr to destroy all the small mets I have I'm the brain but bet I will be the one to not respond. Sorry feeling throughly fed up

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arthurjedi007's picture
Replies 12
Last reply 5/26/2014 - 10:27am

Here's the scoop from my experience at Mayo for Merck's EAP of their MK-3475 PD1.

Took about a week for them to do the paper work.

They were told it would take about a week to get the medicine but they got it within a day or two.

Had to have a little over a week washout period for the Taf/Mek combo.

The dosage is 2 mg per kg of your weight. Administered by iv over 30 minutes every 3 weeks.

Merck has allocated 4500 slots. 100 have been allocated to Mayo and they have filled 42 of them.

If this trial becomes available closer to home they can transfer you.

Here's the trial number if you are interested: NCT02083484

I started it last Wednesday.

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/26/2014 - 12:03pm
Replies by: arthurjedi007, Bubbles, Anonymous

I was diagnosed with stage 4 on Jan 2014. I have to admit I am struggling I just see life before me as hospital appointments after appointment jumping from one treatment to the next.I am not allowed abroad or to drive or for to theme parks cos of brain mets. I find it hard cos see my life being cut short and I am not ready to go buy how can I win when terminal. Does anyone else feel like this

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Mat's picture
Replies 22
Last reply 5/26/2014 - 9:43pm
Replies by: Leonardostagg, Mat, GAngel, tico1, Anonymous, Janner, G-Samsa, BrianP, Phil S, POW

Hi Everyone,

First, I want to express my gratitude and appreciation for the folks who post to this bulletin board.  I've learned so much in a short period of time from your posts.  As you know, as is often the case in life--but especially with melanoma--ignorance is not bliss.  As a result of your posts, I've felt more comfortable discussing treatment options, etc. with my doctors, family and friends.  Thank you.

As for my story, in 2003, I was 29 years old.  I had a small mole on the far right side of my chest near the right arm socket.  For the past year (probably more), it was taking on an odd shape, discoloration.  In hindsight, with the benefit of Google pictures, etc., a clear case of melanoma.  After much nagging over a period of many months (maybe more) from my parents and then girlfriend (now wife), I had the mole removed in a dermatologist's office.  (One of the reasons I had delayed (aside from youthful foolishness) is that a general practitioner had looked at the mole and said it looked "fine"--a lesson that this is not an area for general practitioners (no offense to any readers).)  A few days later, I received "the call".  The dermatologist referred me to one of the top melanoma specialists in my city (Philadelphia).  I proceeded to have a wide incision, sentinel lymph node testing, PET scan.  All were clear.  My melanoma was considered "thin" at .50mm, level 2.

For the next 9 years, I continued to see my oncologist.  The appointments were every 6 months until 2011 when I was switched to annual appointments.  I was scanned for 3 years and then we switched to chest X-rays (all of course with blood work).  The running joke with my oncologist was that I was just there to pay him my co-pay and say hello.  Melanoma was a distant memory.  I was very foolish by not being more vigilant with the mole, but I got lucky and had dodged a bullet . . . or so I had thought.

Of course, 2013 would turn out to be quite different.  I went to my routine annual appointment at the end of June with essentially only one symptom--around April, I started to develop what I thought was an under the skin-cyst on the top of my right shoulder.  My wife was 8 mos. pregnant.  We were busy.  I'm not sure that melanoma even crossed my mind.  I went to my primary care physician (different from the one mentioned above, but the same lesson still applies)--he thought it was a cyst from an in-grown hair.  However, it was on my "shoulder-bag" shoulder and was bothering me, so I went to the dermatologist--she thought it was a lipoma (a harmless fatty mass).  Even my oncologist thought it was a cyst or lipoma.  (Of course, the "cyst" would turn out to be melanoma--more on that below.)  Aside from the "cyst", two new developments at my oncologist appointment--for the first time in 10 years, I had an elevated LDH level (330) and a "spot" in my lungs on my chest X-ray.  My oncologist told me that it was "almost statistically impossible" for this to be a recurrence of melanoma.  We re-did the bloodwork to confirm--LDH level still elevated.  We did a CT scan--total disaster.  Stage IV metastasized melanoma all over the place--liver, abdomen, lungs, bone lesions, more.  

Before I move on, let me pause.  The reason I'm including this level of detail is not because I'm looking for sympathy.  I know that some readers who visit this board are Stage I, consider themselves lucky, etc.  Well, that was me (except I didn't bother visiting the board)!  You cannot be too vigilant about this disease.  In hindsight, I'm not sure what I could have done differently (aside from getting the mole removed earlier)--insisted on a periodic CT scan whether or not covered by insurance?  I don't know.  I recognize that my situation is somewhat unique in that the vast majority of Stage I patients who are clear for 10 years remain so--but there is a statistically significant portion of those folks who have a recurrence.  Be vigilant--and see the "top" melanoma specialist (not "one of the top") in your area.

Back to my story, which resumes on July 10th.  My oncologist's "plan A" was to have me screened by the NIH for one of their protocols.  I researched the TIL treatment online (thank you Bob Heffernan for your posts and your book (a great read which is available on Amazon!)).  I liked the plan, though I did switch my care over to Dr. Lynn Schuchter at UPenn (the "top" melanoma specialist in the Philadelphia-area).  Of course, it took a few weeks to get through the NIH's process.  I received "the call"--I was eligible, subject to being re-scanned at NIH.  The re-scans were a total disaster--significant tumor progression, particularly in my liver.  One small brain met.  I probably couldn't live long enough to go through the TIL process (which takes a number of weeks).  Whereas just a week or so prior, I was reviewing the "menu" of options (ipi/PD-1 trials, etc.), I now had almost none.  Fortunately, UPenn had tested me for the BRAF mutation and I tested positive for BRAF-V600E.  All of the doctors (UPenn and NIH) agreed that I needed to move immediately to a BRAF inhibitor.  (I should also mentioned that within this time frame my blood was re-tested--LDH now at 600 and most liver functions were elevated.)

Dr. Schuchter prescribed the Tafinlar-Mekinist combo (and my insurance company cooperated!).  Last Friday evening--just 8 days ago--I started on the combo.  Within 2 days, the tumor on my shoulder started to decrease in size.  By the end of the week, it was a small fraction of the size it was just a week ago.  My only other surface-level tumor--a small nodule on my left arm--totally disappeared.  Recently, I had developed liver pain/sensation.  Throughout the week, this seemed to be improving--by the end of the week, I was certain that it was improving (easier to move around in bed, pull on a heavy door, etc.).  By the end of the week, I also "felt better", had more energy, was able to work a full day without fatigue, etc.  Yesterday--just 7 days after starting treatment--I had my blood re-tested.  All liver functions are essentially normal, with LDH being only slightly elevated at 240.  In my case, so far, these are miracle drugs.  I recognize that the treatment is a "bridge treatment" and will not last, but I need a "reset" badly--and these drugs appear to be providing one.  Of course, I won't know for certain until I'm re-scanned in a few weeks.

As for side effects, I'm early in the cycle, but so far, I'm only getting joint pain (particularly in the hips).  However, this is totally manageable and a small price to pay.  For any Stage IV patient reading this--if you are BRAF-V600E positive and your tumor progression is such that other options aren't presently available, this combo seems to be a great option.  Thank you Dr. Schuchter (and her entire staff), thank you GlaxoSmithKline for developing these drugs, and thank you to all of the melanoma patients who participated in the trials for these drugs!

Please feel free to ask questions and I will do my best to respond promptly.

Very truly yours,

Mat

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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.

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ray39's picture
Replies 8
Last reply 5/27/2014 - 1:10am
Replies by: brittanyx, Anonymous, ray39, Janner, kpcollins31, ltedge46

My wife noticed a spot on my back Monday night....Tuesday morning I went to the dermatoloogist and she removed it....now I'm waiting...she said it could be melanoma....it didn't appear deep but I'm scared to death.....We have a three year old son who I want to be there for....I cant eat or sleep.....

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aimedon's picture
Replies 5
Last reply 5/27/2014 - 1:14am
Replies by: brittanyx, aimedon, Janner

Hi everyone,

 

Just recently I noticed that the area around an existing mole had become sort of redish, like a halo, and that worried me a little bit. I am in the process of booking an appointment with a dermatologist but would like some opinion as to what this could be.

Here are a couple of images I took just today

 
Thanks in advance

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/27/2014 - 1:19am
Replies by: brittanyx, BrianP, Linny

Hi all,

As of April 28th I found out my biopsy from my upper left arm came back as a melanoma.  I got the call from my dermatologist.  I pretty much blanked out after hearing the word "melanoma".  I did remember her saying the depth was 1.7mm.  I'm located in Lakeland, FL and on April 5th (Melanoma Monday) I will be going to Tampa for my consultation for my SNB with Dr. Zager. 

I'm trying to remain positive.  I am a worrying regardless and I made the mistake of Dr. Googling differnent scenarios.  The most anxiety is the unexpected.

I'd appreciate any information.

Thanks. 

 

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Socks's picture
Replies 2
Last reply 5/27/2014 - 4:15am
Replies by: JerryfromFauq, hbecker

I've been away for awhile trying to get my life back on track and dealing with my mom being sick.

I've been told I'm technically stage 3c but Dr. Lao (U of M Melanoma Clinic) said that my prognosis is better than that would normally indicate. I did have an 8+ mm nodular melanoma removed but it had no satellite lesions or anything; there was no ulceration; 4 lymph nodes came back positive in the SNB, but one was 10%  cancerous, two were 5%, and the last was ~2%. The 26 lymph nodes they pulled out during the dissection all came back negative.

My tumor was tested but came back BRAF negative, so I didn't qualify for one of the local ipi trials. The other was ipi vs interferon double-blind, and I do not want interferon. After a great many scans, I seem to be NED; I go for my first follow-up exam July 11, and I'll alternate between driving out to Ann Arbor to see Dr. Lao (as I will in July) and seeing my local dermatologist. We're doing wait and watch, pretty much.

I'm hoping for advice on where to go from here. I'm very diligent with my sunscreen (50 SPF even though I know that reapplying regularly is more important) and I have a UPF 50+ sun hat and skirt. Are there other things y'all recommend? Dr. Lao says the likelihood that I'm "cured" and the melanoma never comes back is ~40%, which is pretty good for stage 3c, yes? I just want to make sure I'm doing everything I can to stay NED.

Thanks for your help. :)

"Be who you are and be that well." - Saint Frances de Sales

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