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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Hriggenbach's picture
Replies 3
Last reply 1/26/2017 - 7:12pm
Replies by: debwray, Aloha14, momof4boys

On the 19th I had minimally invasive lymphadectomy groin my Dr  accidentally cut my femoral artery and a  vascular surgeon had to be called in to remove a 3in section and reconnect.

since then my thigh is 100% numb and from my knee to my ankle has horrible nerve damage.

My insurance ran out so I have been put in a nursing home. My original tumor location is red and infected, my drain tube they took all the dressing off so it's just being held on by stitchs. Today is the 26th how do I get out of here?


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Showmegirl's picture
Replies 6
Last reply 1/28/2017 - 7:59am
Replies by: MaPerny, Showmegirl, Anonymous, Aloha14, SABKLYN

I finally heard from the doctor's office.  It's been 2 weeks since I had my WLE and SLBN.  I wasn't supposed to see the doctor until next week because he is out of town this week.  I called the office because I was having some pain in my arm and wanted to rule out any complications.  The nurse called back and told me what the cause was and what to do to make it feel better.  Then she asked if anyone had called with my results.  I told her no becasue I was told I had to wait until my follow up.  She said I have great news for you!   The lymph nodes tested negative and the margins were clear.  I can't help but be thankful and very excited.  I don't like to be happy when others are going through such hard times, but there is hope and you cannot give up. Bless you all!!

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Dear all,
I have the following question to community:
I have melanoma (Braf mutation) and now I have metastasis in spine L2 only.
Doctor has advised to make Stereotactic Body Radiation Therapy (SBRT) in L2
with the following dosage : 5 fractions with 4 Gray per fraction (20 total)
From my searching via internet I guess that it’s not enough in case of melanoma, I mean dose per fraction and total dose.
Did someone have that experience with radiotherapy in spine?
Pls advice

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Anonymous's picture
Replies 2
Last reply 1/26/2017 - 6:37pm
Replies by: snow white, Mandy88

Two weeks ago I felt lump near private area when looked that was nothing to worry about but I did then see around four raggy black patches of skin around the bottom of my labia inside, concerned I went to the doctors she was unable to tell me but said it wasn't an infection etc, she would have to refer me to a dermatologist, because I was getting anxious myself and my partner booked in to see a private dermatologist the next day, after examining she said we need an urgent referral to the ongologist just so we can rule out anything and they can do biopsies (more than one) and have a full internal examination, I was told that my doctor would send my referral (no private health insurance etc so back to NHS) however the doctor sent referral letter to wrong hospital so we have to ring around in order for the referral to get sent to correct hospital. An appointment has come through for the 31st to go to see oncologist at the treatment centre, I noticed on the letter it did not say anything about what was going to happen so I call reception they have said that this appointment next week it to see the consulate there  and to register as I have been there before so couldn't do the biopsys at first visit yet this was exactly what appointment was for urgent referral for examination etc, I would then probably have to wait more weeks to go back again for biospys and more weeks for results is this what usually happens as I'm so worried the hardest part is not knowing, I may add for over a year now I have been complaining of all kinds of aches and pains and fatigue doctors could never tell me anything other than perhaps your stressed or run down, so now finding this I'm really worried as I have no idea how long these black patches have been there, I have also now noticed a small white:clear lump on top of vagina and from what I can see inside uthera tube is also black I'm so scared now but cannot get anything sorry for being tragic just trying to explain and see if anyone else has had this or been in same situation thank you going out of my mind with waiting and not knowing and I think how rough  for a year I've felt and now I find this.. 

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Bmine102793's picture
Replies 3
Last reply 1/27/2017 - 4:26pm

As youve read my fiance was just diagnosed but we dont find anymore out till next week. Well hes having a hard time copeing. He took three days off to calm down and was supposed to go back to work today but woke up this morning was headed for the door ran back in and started throwing up and then called off. I know hes nervouse and i am to. And i really am not helpful because i have a bad outlook on things like this because thats just the way life has worked out so far. And its worse because i research so much and tell him what i find. I hate that i do that but my daughter was recently diagnosed specific antibody deficiency and with out my research and deep digging none of her doctors would have peiced it together yet. Sorry guys just venting and wprried and i love spending every moment we can tpgether but i have to get him back to his feet so he doesnt give up all ready

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iskitwo's picture
Replies 8
Last reply 1/29/2017 - 1:12pm
Replies by: dmturner, mjanssentx, iskitwo, dentholla, Anonymous

Just wondering if anyone on here as used Dr Cowey. I am currently seeing someone at MD Anderson but would like to have a good Melanoma oncologist closer to home. I can see were MD is going to be great for trails or even opinion for plan of treatment but with 2 small children being close to home is my goal. 


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Bmine102793's picture
Replies 6
Last reply 1/27/2017 - 5:25pm
Replies by: mjanssentx, Bmine102793, Patina, UBContributor, Anonymous

My fiance had a dark mole on his arm that grew in size and width and changed colors one day he showered and scrubed it off and it bled pretty nast but was gone with in about 3 months he developed a large hard tumor like growth about 2 months after that he developed a large lump under his arm pit which i imagined was his lympyh node and i made him go to the doctor. She thought it was nothing to be concerned about and sent him to surgeon for removal. He had the lump by elbow area removed abd lump under arm removed. The beggining of this week he went in to have staples removed and sugeon told him that biopsy came back positive for malignant melanoma. We are scheduled to see an oncologist on tuesday for more info and treatment options we have no clue what stage we are in or how bad it is. Im am very scarred for him and our kids our financials and everything and i am unable to work because our youngest daughter has an immune deficiency that causes her to be sick constantly. Any advice or help? The area under his armpit seems to still have some kind of growth which makes ne think surgeon didnt remove it all

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jenny22's picture
Replies 1
Last reply 1/25/2017 - 1:54pm
Replies by: snow white

Hi Kerri-

As we have been following several facing tough challenges these days it made me think about Jake and wondered how he is.....

Last you wrote he wanted to go to Germany, among other possibilities...

Please let us know how he is and how you are dpoing.




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Anonymous's picture
Replies 2
Last reply 1/25/2017 - 9:11pm
Replies by: Janner, jennunicorn


I noticed a new mole on my leg.

Now I am wondering. Can melanoma pop up out of nowhere and have an invasive depth from the first second? For example a depth of 0.6?

I don't really understand the progression of melanoma so I would really like to hear from one of you.

Thanks so much!!

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mattg's picture
Replies 7
Last reply 1/26/2017 - 2:17pm
Replies by: mattg, oocn, Anonymous, jennunicorn

Some history:

I joined the melanoma club on October 25th, 2016 following the biopsy of a birthmark mole near my left sideburn.  Following a haircut, I knew something wasn't right.  The depth was reported to be at least 1.5mm putting me at 1B.  Went for surgery #1 on Nov 30th for the wide local excision and SLNB.  One lymph node came back positive (micrometastisis I believe is the term) putting me at 3A.  After discussions with an onologist and my surgeon a Modified Radical Neck Dissection was performed on Jan 6th.  We have coverage through Kaiser Permanente so all doctors, etc work for Kaiser.

During the neck dissection, the sternocleidomastoid muscle was removed and a major nerve (forget the name) cut and repaired.  I had a previous neck surgery as an infant which produced scare tissue complicating the dissection.  I have the planned incision from behind the ear almost to my adams apple, but then also have an incision forming a T shape towards my shoulder.  Thankfully, all 48 lymph nodes removed were clean.  Pain immedately following surgery was very minimal as I couldn't feel much at all due to the nerve damage.

Several days following surgery, the pain intensified especially near the base of where the sternocleidomastoid muscle was removed (near the collarbone).  I am now approximately 19 days post surgery and the pain is still intense, with little improvement.  Surgeon has refilled my oxycodone and told me that pain from thie surgery may last 1 to 2 months.  Some days I've needed to pair the oxycodone with tylenol to boost the effectiveness.  Initially I was told I would be pretty beat up for about a month, but honestly, I wasn't expecting that since I bounced back so fast from the first surgery.

Long post, but I was hoping to get some experiences from others who had this procedure and had the muscle removed - which is where I am assuming the pain is coming from.  How long did you expereince the upper chest pain?

Thank you


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Successful Immunotherapy Requires System-Wide Immune Response

‘Memory’ Immune Cells May be Key to Long-Term Prevention of Cancer Recurrence

New research led by researchers from UC San Francisco and Stanford University has found that successful cancer immunotherapy appears to depend on whether the treatment can trigger a system-wide immune response, rather than just a local response within the tumor itself. Specifically, data from both mouse models and human patients indicated that successful immunotherapy activates a population of peripheral “memory” immune cells that the researchers speculate are key to immunotherapy’s ability to mount a long-term defense against cancer throughout the body.

The findings — published Jan. 19 in Cell — suggest a new explanation for why immunotherapy, for all its promise, has so far only been effective in a minority of cancer patients, the authors say, and offers leads about how to tweak the approach to bring its benefits to many more people.

“Profiling the immune response across the organism allowed us to see that successful immunotherapy involves widespread activation of the immune system in places far from the tumor itself: in the lymph nodes, the bone marrow, in the blood,” said lead author Matthew Spitzer, PhD, a UCSF Parker fellow and Sandler Faculty Fellow, and a member of UCSF’s Parker Institute for Cancer Immunotherapy. “This suggests that priming the immune system for a more systemic response could significantly broaden the effectiveness of immunotherapy.”

Spitzer conducted much of the research for the new study as a graduate student in the labs of Edgar G. Engleman, MD, and Garry P. Nolan, PhD, of Stanford University, and recently joined UCSF as a faculty fellow to continue his work studying how the immune system coordinates its systemic response against cancer and other threats.

Technique Reveals Whole-Body Response

Immunotherapy has been lauded as a transformative new treatment for cancer: in some patients recruiting the immune system to battle cancer makes tumors melt away and stay away. But so far, most patients simply don’t respond. Some forms of immunotherapy, such as anti-PD1 “checkpoint blockade” therapy, are frequently effective against melanoma, but fail to trigger a successful immune response against most carcinomas, which are the most common forms of cancer.

Most previous studies of immunotherapy response have focused on how treatments recruit immune activity within tumors themselves, but in their new research, Spitzer et al took a larger view of the problem, developing a computational platform — which they call “Scaffold” — that let them intuitively visualize the immune response in detail across a whole organism during successful and unsuccessful immunotherapy treatments.

“Previously we really had no ability to analyze, in detail, the state of immune cells throughout the body,” said Engleman. “This allowed us to get a detailed snapshot of what the immune system likes like in many different tissues at one time, or at several different time points.”

Specifically, the researchers used a genetically engineered mouse model of triple-negative breast cancer to study how the immune response to anti-PD1 therapy (which is ineffective in these mice) differed from the immune response to an experimental therapy that the researchers had recently shown to be highly effective against the form of cancer these mice develop. The new therapy combines tumor-binding antibodies — which provide a bridge between tumor and the immune system — with chemicals that activate a type of messenger immune cell called dendritic cells which are important for educating the rest of the immune system about specific threats.

In the new study, the team analyzed immune cells from different tissues across the body using a sensitive technique called mass cytometry to identify which types of immune cells were present and learn about their functional state. Using Spitzer’s Scaffold software, they were able to see that while the ineffective anti-PD1 therapy triggered a short-lived immune response in the tumor itself, the effective experimental treatment triggered a coordinated immune response across many different tissues, even as the immune response within the tumor itself began to die down.

“This suggests that studies which have looked for activated immune cells within the tumor as a sign that immunotherapy is working may have been looking in the wrong place,” Spitzer said. “You need to see an immune response outside of the tumor to have an effective treatment.”

In addition, the team found that successful immunotherapy activated a population of immune cells called CD4+ T cells, which appear to be key to “remembering” the tumor and coordinating a long-lasting immunity to cancer throughout the body. When the researchers extracted CD4+ T cells from successfully treated mice and transplanted them into other mice, these memory cells alone proved to be sufficient to trigger an immune response against the other animals’ tumors.

“Most people have focused on CD8+ T-cells, which are like the immune system’s police force that go around taking out dangerous cells,” Spitzer said. “The fact that we saw such an important role for CD4+ cells instead was a bit surprising. But these cells are very important for coordinating immune responses in other settings, so it is logical.”

To learn whether the same type of systemic response occurred in human patients who responded well to immunotherapy, the authors used their technique to examine of the blood of patients who had been given anti-PD1 drugs to treat melanoma. The researchers found signatures of the same type of CD4+ T cell activation in the blood these patients, suggesting that a similar systemic immune response may be key to the success of immunotherapy in humans as well – even with a different type of cancer and different immunotherapy approach altogether.

Priming Immune System Helps Immunotherapy

Finally, the authors examined how some tumors might be evading treatment in cases where immunotherapy fails. In their animal models, they showed that following the injection of immunotherapy agents into a primary tumor, other tumors in the animal start producing a molecule called PD-L1, part of the “checkpoint” system that acts to suppress the ability of the immune system to attack these tumors. The authors found that adding an anti-PD-L1 drug to their experimental immunotherapy enabled the immune system to successfully eradicate these additional tumors.

The new study shows that measuring the body's immune response as a whole may be key to understanding how to effectively recruit it in the fight against cancer.

“We find that the more you look into the areas you think you understand, the more you realize you are missing the big picture,” said Nolan. “By looking at everything and using social network math, we can discover how cells work together to defeat cancer. Interestingly, it is also providing clues on which cell types cancer interferes with to defeat the immune system.”

Spitzer says he hopes the techniques he and his colleagues have developed will open the door to a wide variety of experiments to understand the complex workings of the immune system: “We simply haven’t had a good way to assess immune health across the whole organism until now. We’ve been looking through a pinhole — now we have an opportunity to see the entire landscape.”



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45_dps's picture
Replies 4
Last reply 1/26/2017 - 1:52pm
Replies by: Anonymous, Linny, Marksa2570


Today I received my treatment plan and we are happy with it. I would like to hear comments and input...please.

Stage 3 melanoma (found in the lymph nodes of my neck) without a known source (skin-based source was either beaten by my immune system or I picked it off because I'm slightly obsessive compulsive disorder (OCD)).

Therapy: Complete lymph node dissection in the area. Then IPI / Yervoy (10mg) for 2 years (starting every 3 weeks then down shifting to every 3 months).

Holding back on Keytruda in the unlikely future event of a recurrence then I would be given it.


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vickiaa0529's picture
Replies 2
Last reply 1/25/2017 - 10:43am

Just had another fainting spell. I was waiting to hear back from MD Anderson about starting an aspirin regime, which is what was recommended. I was diagnosed as AFIB. Is that a side effect of ipi? 
What is the difference between fainting and a seizure
I just had my brain MRI and it was clear as of 1/11

In the ER now



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_Paul_'s picture
Replies 6
Last reply 1/25/2017 - 1:55pm

Things were simply going too well, so like a dumb-ass I had to toss a fly into the ointment. Ever since receiving the TIL my breathing has been somewhat labored and crossing streets and whatnot would feel like I was maxed out.

I was supposed to be driving back to Seattle from LA yesterday,  but I thought I should take care of the breathing first. So I went to the ER at Cedars-Sinai for what I was hoping would just be a jug of oxygen. They did an X-ray, then a CT  (during which time someone in the ER helped themselves to $800 from my wallet).

Results showed fluid surrounding lungs and heart.  So yesterday, in a procedure that is certainly up there with medicine's rather unpleasant, 300ml was drained from my right lungs via a needle, while awake. They are now testing me to see if the sac surrounding my heart should also be drained.

Once I get past this little setback then I can get consented and started with the trial. I will be very happy when that gets going.

In the meantime,  things are progressing with the visa for my fiance, Pilar, although glaciers move faster than the US beauracracy.

- Paul

To exist is beyond fantastic.

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jdm22's picture
Replies 6
Last reply 1/30/2017 - 10:46am
Replies by: jdm22, Sweetv83, Janner

I am new here, and to say nervous/scared is def an understatement. I received a phone call while out of town on business that my report came back from a spot on my wrist I had checked last week. I have had this same place examined 2 years ago, but was told no reason to do anything to it even despite my concern. Now they have done a biopsy this time and was told on the phone it was melanoma and need to schedule surgery to reomve immediately. I have surgery tomorrow to remove...lesion is 1cm across, but guessing I won't know detials/depth/staging until after the surgery tomorrow and testing after that? I made the mistake of googling after the phone call and wow was that a mistake. I have three young daughters and a wife who is terrified. Needless to say I understand their feelings. Trying to maintain a level of "oh I am sure it will be fine" but that is difficult when you are coaching, playing, and spending time with your little girls. Hoping for a best case report, but the time I have had the spot makes me terrified of what they will say. Thanks ahead of time to all of you out there that have walked in my shoes before, and prayers for those who are currently walking this same journey as I. 

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