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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darinohio's picture
Replies 2
Last reply 1/9/2016 - 3:58pm
Replies by: _Paul_, jennunicorn

  I first want to say this is a very helpful forum.  i check in occacionaly the warmth and knowledge 

you all share is very comforting.  I have a question hopfully someone can relate to. 5 yrs ago I went 

thru a full year of inferon treatments for stage 3 nodular melanoma. i still see my oncologist regularly.

it seems about once a year a new mole or spot shows up. He has it removed and they always come back melanoma. Each year there are more spots. I see him in 2 weeks and i have 6 more suspicious spots.

  My question is how long does the interferon therapy last ? Are these considered recurrances?

Can I do another kind of therapy?  I'm just worried cause the spots are appaering more frequently.

                 Thank You and Gos Bless

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/9/2016 - 11:31am
Replies by: jamieth29

Sorry but I'm sick to death of the time wasted and the money wasted and the tests and the tests and the test.im going to skip it all and let the chips fall where they may.

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Eileensulliv's picture
Replies 15
Last reply 1/8/2016 - 9:14pm

At my appointment last week, my doctor said my latest CT scans were better than stable... He said the nodule in my lung is so much less conspicuous that it is opaque and hardly noticeable... Confident the cancer is gone, and the same goes for the cancer that was in nodes in my mesenteric bowel... The nodes are all back to normal size if not even a bit smaller than normal. He said this was an excellent scan and that he is confident in saying there is no evidence of disease! 

So the plan is to continue on nivo, complete the two years (March 2017!). Some have said the full two years isn't necessary, but if it helps with a durable, longer lasting response, I certainly don't mind the treatments! I still work 40 hours/week, and live my life with minimal side effects! 

Needless to say, I couldn't be happier right now! I'm so thrilled... Christmas came early for me this year!

On a side note, I will be participating in the Advocacy and Summit Hill day for the MRF in March. Will I have the pleasure of meeting any of you in DC in March?

Eileen 

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mireillep's picture
Replies 1
Last reply 1/8/2016 - 9:06pm
Replies by: sayres

İ am a 74-year old female.The malignant melanoma on my ear(in 2013)metastasised atypically and İ have undergone successful surgery on my breasts followed by 4 months of Tafinlar 75mg which eliminated a small tumour on my lung.The side-effects have been severe with mainly hair loss and strong back pain on my right shoulder blade and upper right arm and thickening of the skin under my feet.İ have to remain on Tafinlar for 3 more months at 150mg daily.What İ want to know whether anyone has experienced similar side effects.Has your hair grown back and has the back pain disappeared?

Did the treatment work?

Mireille


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knittingirl's picture
Replies 7
Last reply 1/8/2016 - 8:38pm

Hello,

I was following a yervoy/opdivo infusion since October but after the third infusion my liver enzyms went up, I developped hypothyroidism and finally diarrhea ( 6-7 stools a day). I have started prednisone last Tuesday ( 40 mg in the morning and 20 mg at night). While I am under the medecine it controls pretty well my diarrhea but around 2 a.m I wake up and go 2 to 3 times to restrooms until 5 a.m and same at the end of the afternoon.I am very tired because I stay long time awake at night.

I know that everyone is different but how long should I wait before to see any improvement regarding the diarrhea ? I understand also the prednisone will have to be tapered before I stop to take it, how long should it take ( weeks ? days ?)? Any advice for having better night sleep  ( I prefer natural remedies )?

I won't be able to get the fourth infusion, but the doctor told that if my diarrhea gets better quickly, we may consider only Opdivo as Yervoy seems to be the most toxic effects of the combo.

The good news is the tumor is not detectable anymore under my skin and neither with the portable ultrasound at the doctor's office. I wait impatiently for the CT scan.

Best

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Gwen in Maine's picture
Replies 22
Last reply 1/8/2016 - 8:13pm

Hello Everyone,

I've been reading the forums for a few months now and am grateful for such a supportive place to post.

Here is my history. I've been dealing with Melanoma for almost 2 years now - diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

Thanks so much,

Gwen in Maine

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Nanners10's picture
Replies 11
Last reply 1/8/2016 - 6:50pm

Hi all,

Just writing to see if anyone has any thoughts on the following:

Original diagnosis May 2002, WLE removed 2.24mm mole and no further treatment was deemed required.

Recurrence in regional (groin) lymph node basin November 2014. Groin dissection performed only one malignant node of four taken. Completed ipi/interferon trial in June 2015 (received ipi at 3mg dose).

One enlarged groin and one enlarged pelvic lymph node found on CT scan November 2015. Groin node was biopsied and determined to be melanoma. Surgery performed Dec 2015 to remove both lymph nodes. Three nodes were taken in total, the two enlarged ones were positive for melanoma, the other one was clear.  

Now, options that have been given are radiation and interferon. No trials are available for me as adjuvant therapy at stage 3b because I already had ipi. 

My dr. says that he doesn't think interferon will do anything for me because the ipi failed and it already has such low stats to start with. He says it will only make me sick for a year but nothing good will come of it. How does he know this? Is there anything to link interferon and ipi? Or is this just on the fact that ipi has a better track record than interferon and if that didn't work than chances are interferon won't either. I was considering interferon as a last resort if only for the fact that it would delay recurrence and who knows what drugs will come along in that time. 

Radiation is probably a possibility (waiting on my consult) but there aren't any studies that show increased overall survival (to my knowledge).

My dr. says that there are lots of treatments for me "down the road" because of my BRAF mutation. Problem is that down the road means stage iV and that's not very comforting.

I feel like I am just waiting on another recurrence.

I would love to hear from anyone in a similar situation to get your thoughts on what you have done or been offered. 

Nancy

 

 

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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Recently diagnosed as favoring Spitzoid Melanoma Clark level IV, Breslow 2.6 w/mitosis of 6. Lump was on top of my ear. Going to Milton Hershey Hospital which is part of Penn State. Anyone have experience there?
Hoping to go to Penn but they don't take my insurance.
Thanks

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chrisholder's picture
Replies 9
Last reply 1/8/2016 - 2:57pm

Hi, all,

I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma.  Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization.   Am now on Pembrolizumab (Keytruda) & so far tolerating it.  Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc.  Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!

I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and - in the face of this awful disease - humor.  I pray for everyone's peace, comfort and improvement.     Chris

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SD's picture
Replies 3
Last reply 1/8/2016 - 12:21pm
Replies by: Anonymous, SD, vivian

Hello, 

I'm 33 years old male from Delhi India. I've been diagnosed with metastatic Desmoplastic Melanoma  stage 4. It originated at a mole on scalp and metastasized to salivary gland and lymph nodes nearby. All of it was discovered almost simultaneously and was surgically removed (with wide excision). PET CT now shows NED. It has been one month since the surgery and I am now struggling to find sound advice or treatment from doctors in India. I have been to the best ones here. They all say its too rare for them and they are not sure of the best course of action, although they have mentioned interferon -alpha as one of the options.

I have decided to come to US for a month to explore further options. 

My most pressing concerns at the moment are - 

What should be the course of treatment for me now?

Which doctor/hospital should I consult with in US - I'll be travelling to New York first and have friends there. NY and surrounding area will be most comfortable for me. So far I'm leaning towards about Dr Sanjiv aggarwala of St Lukes's UHN, in PA. (based on reference from doctors here, but they dont know him directly). The other frequent recommendation is MD Anderson in Houston. Any other better ideas?

I would be obliged for any guidance/suggestions you all can offer.

Thank you!

SD

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/7/2016 - 8:01pm
Replies by: Anonymous, ldub

Christmas night going to bed at my in laws I walked by a mirror and noticed a dark spot on the back of my arm. It looked like someone got me with a sharpie marker. I tried to wipe it off. I realized it wasn't coming off. I looked at it closer and it is a black, slightly raised, mole. I have never had a mole in this location. It is a new mole.  I have no moles that look anything close to the color black on my body. I haven't measured it yet, but it is bigger than a pencil point, maybe between 2 and 3 mm.  

I am out of state and will be visiting with my PC and a dermatologist when I return home next week. I don't think I would've noticed this had I not been at my in laws, the mirrors in my bathrooms are much higher than theirs.

Has anyone's melanoma stared out as a small new black mole? Could you share your story, or link me to a story already in the forum. 

Thanks.

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mkirkland's picture
Replies 5
Last reply 1/7/2016 - 11:12am
Replies by: AshleyS, JuTMSY4, Anonymous, mjanssentx, CHD

Does anyone know of any therapy or remedies to help regain feeling after lymph node removal? I had my surgery in September at my right groin and haven't really regained much feeling in my upper thigh. It goes down the inner thigh, down to my knee and in the groin area. (And even a little further over) I know it's possible not to regain any but if anyone has any helpful hints I would greatly appreciate it. 

Misty 

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Anonymous's picture
Replies 12
Last reply 1/7/2016 - 11:08am
Replies by: Ed Williams, Anonymous, Empire, Toby0987, specka, SABKLYN

My diagnosis from a shave biopsy preformed on 12/16/15:

Type:  Superficial spreading

Tumor thickness (Breslow):  at least 1.80mm (base transected)

Anotmomic level (Clark):  at least IV

Ulceration:  absent

Dermal mitotic rate:  3/mm2

Microsatellitosis:  not evaluable

Vertical growth phase: present

Regression: absent

Angiolymphatic invation:  absent

Neurotropism:  absent

Tumor inflitrating lymphocytes:  present, non-brisk

Precursor lesion:  absent

Pathological stage:  at least pT2a pNx pMx

Additional written comment on the Dermatopathology report:  The in situ melanoma extends to one peripheral margin, and the invasive component is transected at the base, precluding accurate measurement for Breslow's depth and pathologic state (deferred to final excision).  Sections show a proliferation of atypical melanocytes in the epidermis and dermis.  The junctional component is disposed in a confluent fashion with pagetoid upward scatter.  Ther dermal component is present in large aggregates without maturation.

MY COMMENTS/QUESTIONS/CONCERNS:

The Biopsy was done on 12/16/15 and the diagnosis was delivered to me on 12/22/15.  While my Dermatologist offered to find a local Oncologist to refer me to, I told him that I preferred to have my treatment handled through MD Anderson, which is about a 3-4 hour drive for me.  

Because of the holidays I did not hear back from MD Anderson until 12/29/15, and an appointment for 1/13/16 was the earliest I could get in to see a surgical Ongologist at MDA. I was also told that for the Oncologist I will be seeing, they were, as of 12/29/15, scheduling surgeries for the week of 1/25/16.  This leads me to believe that by the time I am seen on the 13th of January, they would be scheduling surgeries for the middle of February.

This would be roughly two months since my biopsy was performed, which "feels" like a very long time before I will know officially what my diagnosis and stage is.

Questions that I have:

1.  Is there a way to know if this is a slow-growing type of cancer?

2.  What does a dermal mitotic rate of "3" mean?  Is that good, bad, average?

3.  Overall, the stage of "at least" pT2a is all we know since no surgery has been performed.  Given the report indicates "at least", should I assume that surgery is imminent?

4.  If surgery is required, would that be a wide local excision (WLE)?

5.  At this point I only know that the Breslow's thickness is "at least" 1.80mm, and that the pathologic stage is "at least" pT2a pNx pMx.  Does this mean that I should expect a Sentinel Lymph Node Biopsy (SLNB) at the same time I have the Melanoma surgery (WLE)?  SInce the report says "at least", how can I know if that means the thickness is 1.9 or 2.9 or 3.9, etc.?  

6.  If surgery is imminent, then should I have to wait until my initial appointment at MDA on 1/13/16 before scheduling the surgery to occur after the initial appointment?  I.E., could I go ahead and have my surgery scheduled for the week of 1/25/16 even though I won't have my initial appointment until 1/13/16?

As you can see I'm pretty anxious about waiting all of this time before I know something more definitive and my anxiety (and my family's) grows in proportion to the time I have to wait.  If I had a better understanding of whether a couple of weeks or months matter that much, it would help me to either push for earlier appointments at MDA, or to relax and stick with the times that are available for me at MDA.  Alternatively, should I go ahead and see a local Oncologist who may be able to see me sooner and perform the surgery sooner?

 

Thank you!

 

 

 

 

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