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
Replies 26
Last reply 1/13/2017 - 4:40pm

hello folks,need your help please with the next step of decision making. My husband has been diagnosed with stage IIIB nodular cutaneous melanoma, 2.9mm depth, mitotic rate 10, very focal ulceration. One sentinel node was found positive with sparse .1mm-.2mm malignant cells.   He tried to get PD1 via a clinical trial but didn't get the PD1 arm and was randomized to the IPI arm at 10mg.  we have tried to gather info on stage III choices.  we need help makign our next step decision please: therpay? what kind? wait and see? .

1) IPI at 10mg seems very toxic with high % grade 3-4 immune type reactions.  one prominent melanoma oncologist is recommending 3mg based on toxicity. others are saying 3mg is not proven and to stick to 10.  is 10 mg IPI for stage III the way to go? or 3mg ?

2) the data on efficacy of adjuvant threpay is confusing.  one graph showed 5 year survival for IPI 10mg only improves from 22% to 25% for people who got adjuvant therapy. is the 3% improvement worth the risk of toxic reactions?  does it delay the recurrance ?  by how much?

3) given the info on his initial mole and micro met in his sentinel (detailed above), is he a good candidate for "wait and see"? or is his cancer too aggressive to wait? 

4) what are the chances of finding an oncologist to go "off label" and provide PD1 for stage III even though it is still under trial?  PD1 seems to be more effective and less toxic.  but is it worth the money and time to chase PD1 outside of trials? how do we go about doing this?

5) aside from PD1 and IPI, is there anything else, even off label, to consider for stage IIIb?

6) are there any natural immune booster regiments which are backed by data?

any help would be appreciated. if you are pointing us to any data, it would be great to get your interpretation alongside the data as the data can sometimes be confusing.  FYI, we are in northern california, SF bay area.

thank you kindly

 

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vickiaa0529's picture
Replies 9
Last reply 1/13/2017 - 12:37am

Hi 

I been lurking for a while and rooting for you all with lots of prayers and positive energy. I just finished four rounds of ipi just had scans and now there are new lesions on my lungs. New choice is a trial with Nivo and Dab Tram or Keytruda? 

This is a MDA trail. Has anyone tried it or any thoughts?

 

thanks 

vicki

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Anonymous's picture
Replies 2
Last reply 1/12/2017 - 9:24pm
Replies by: Anonymous, BillMFl

I have posted a few topics on here bc the last three weeks have been a roller coaster for me. I had two doctors tell me when looking at a mole on the back of my neck that it was highly likely to be melanoma. They did a punch biopsy and I waited a week for the results. Somehow the results came back as sever atypia and we schedule an excision and decided to be aggressive and take wide margins just to be safe. 

When I went in to my post op appointment, I was told that the results of my pathology report were what the originally thought - malignant melanoma in situ. Margins were clean and now I'm scheduled for a full body check in two weeks and will get one every three months.

I'm young and a mother to two babies - one 18 months and one 11 weeks. Reading about melanoma and pregnancy has me scared out of my mind that something else could be lurking. I'm just so thrown as to how I had such relief from the punch biopsy only to be thrown again hearing it was melanoma. Is this a result of a poor pathologist reading? 

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jennunicorn's picture
Replies 17
Last reply 1/12/2017 - 7:44pm

Question for those on here that have experienced hypophysitis as a side effect:

Did you get a headache? How long did it last before you got treated? What kind of headache did it feel like: dull all over head pain or neck and sharp pains in one part of head? Did you feel lightheaded?

I do have Prednisone on hand I can take at any time, I would just hate to jump into it if I don't have to. I have a PET/CT next Tuesday 1/17. I would like to just wait until I get the results of that and results of the blood tests I'll be getting Thursday 1/19 before jumping on the steroid train... but I'm wondering if I'm pushing it? Also have Nivo infusion scheduled for 1/19. All done with Ipi... which is likely the thing that is making me feel so crappy.

My headache has been around since Wednesday evening after getting up from laying on the couch and a sharp pain and tightness occured in my neck which hurt for a bit but went away leaving the headace. Still getting the fever every evening and taking Aleve which helps with that. 

My onc is back in the office on Thursday, so I'll be asking her about the same stuff, just want to get an idea from other patients.

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Toddmichael's picture
Replies 2
Last reply 1/12/2017 - 5:34pm
Replies by: Toddmichael, marta010

Hi - starting 5 sessions of radiation this week.  I'm wondering what to expect, hopefully nothing too severe.  have had radiation before on top of head and only real side effect was some reddening.  I've been told about the slight chance of it affecting my saliva.  Thanks for any input.

Todd Guzy

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Hi all, I recently was asking if I need SLNB, 1,5 mm MM, 26 years old. So I got 2 nodes removed from groin area today and also had wider cut made around the intial mole spot. What is my chance to get lymphodema? Can it be totally avoided? Now should I be moving my leg more or avoid much movements? 

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snow white's picture
Replies 14
Last reply 1/12/2017 - 2:45pm

Hello my friends.  i am reaching out for my Mom.  She is desperatley in need of some kind of support to get her through this time with my Dad.  Unfortuantely, the boards I believe are just to much information for her.  Mom has tried to get in contact with a few groups, but unfortunaltey has never received a reply back.  I have also reached out to MRF to see of any suggestions from them.  Let me know if you have any suggestions.  THANK YOU!!!!

Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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CindyCo's picture
Replies 2
Last reply 1/12/2017 - 1:14pm
Replies by: CindyCo, debwray

My mom's latest CT and MRI show that the primary anorectal mass has gotten larger, one enlarged inguinal lymph node has also gotten larger, and there is a suspicious new 5mm nodule showing up in her lung. Needless to say, we are disappointed.

Since she got one dose of ipi/nivo back on October 20, before needing to stop and get on steroids, we're assuming that dose either did nothing or was cancelled out by the steroids. Since the primary mass has gotten bigger, her doctor suggested radiation and going from there. He said that it would stop a lot of the bleeding and ease some of the discomfort. Can anyone share their experience regarding radiation of this area? We are curious about how many sessions of radiation, what dosages are normal, pain from radiation, recovery time, etc...

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Showmegirl's picture
Replies 12
Last reply 1/12/2017 - 11:08am

I just recieved my pathology report from my initial biopsy.  I could really use some help trying to understand this report.  I go to see the surgeon this week, but I'm going crazy now.  So any insight would be greatly appreciated.  THANK YOU!!

This is what the report says: Malignant Melanoma, Margins - Positive

Tumor size- 0.7cm

Macroscopic Satellite Nodule - not Identified

Histologic type - Nodular melanoma

Maximum tumor thickness - At least 1.88mm  (Clark's level IV)

Ulceration - Not identified

Peripheral margins (invasive) - Negative; distance = (0.3mm)

Deep margin - Positive

Mitotic rate - At least 1 per mm

Microsatellitosis - Not identified

Lymph-vascular invasion - Not identified

Perineural Invasion - Not identified

Tumor Regression - Not identified

AJCC pathologic stage - pT2a, pNX, pMn/a (stage at least pT1B)

Non brisk tumor infitrating lymphocytes present

 

 

 

 

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Bboggs78's picture
Replies 8
Last reply 1/12/2017 - 4:55am

So I hope it is ok that I am posting as we have not received my biopsy results yet (my appointment for that discussion is 01/13). My story is a bit long and complicated so please bear with me.

I have been struggling with illness of unknown origin for awhile now, illness that has been progressively getting worse. Many tests have been performed and the doctor's were leaning towards an autoimmune disorder.

In 2014 a biopsy was done on my stomach and esophagus, which my pcp never received the results to but the gi dr said I had a lvl 2 systemic disorder. In 2015 my gallbladder was removed. Then 6 months ago my husband took me to ER and we discovered my right kidney was atrophied and I have CKD. I had to see a urologist who ran a ton of tests then sent me to a gu oncologist. In the meantime I am supposed to see a new gi specialist as I have been diagnosed with malabsorption diarrhea. I also have started having to see a breast specialist due to an issue with my right breast.

Getting to the point of why I'm reaching out to people here (thank you for your patience)...I was recently (11/2016) in the hospital for breast surgery. While I was being prepped for the OR the hospital staff noticed a rather large "suspicious mole" on my upper back. I had no idea it was there so no clue how long it's been there. I had an anesthetia complication which caused a cardiac ischemia. As a result a chest CT was done and it was noted that my axillary lymph nodes are abnormal but my CBC ruled out infection. My breast dr looked at the mole at my surgery follow up and said there were actually two of them. Then my PCP, who saw me at the beginning of December, saw three. Now I know he probably shouldn't have mentioned melanoma as a possibility, but he's been my doctor forever and knows I hate secrets. He said I needed to go to the dermatologist to rule it out, especially with the issue of the lymph node abnormalities.

I went to the dermatologist and he did a full body check. Then he used a dermascope on the "several spots of concern" I now have on my back. He chose the two worst ones to biopsy. I'm going out of my mind waiting for the results!

He is a teaching doctor so even though he tried to put me at ease he was going over the risk factors that apply to me to his students:
Pale skin
Many moles
Freckles
Blue eyes
Red Hair
History of several bad sunburns, including at least 5 cases of actual sun poisoning
Tanning bed use when I was young

Sorry for the long story, my family has just been going through so much...especially these last 6 months. I'm desperate for someone to talk to that can understand.

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snow white's picture
Replies 3
Last reply 1/12/2017 - 2:47am

Hi All and especially Paul.  I was able to get Dad an appointment with Dr. Hamid on Monday Jan 16th, coincidentally I believe Paul has an appointment the same day!  I am hoping we are able to get all of his medical records by then.  BIG THANKS to Paul for Jasmine's contact info, she was great to speak to.  I don't know really what we expect to achieve seeing him, but I just feel more comfortable having another set of eyes that specializes in mel. on Dad.  If you have any suggestions on questions to ask or any input at all please let me know.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. On Opdivo. Receiving treatment @The Angeles Clinic

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CHD's picture
Replies 4
Last reply 1/11/2017 - 9:45pm

Forgive me for bringing up a topic that isn't maybe totally positive.... but how many of you or your loved ones with melanoma have bucket lists?

My husband has developed major depression since my melanoma diagnosis in 2013 and all my time and energy has gone to trying to help him get through this.  It isn't related to my diagnosis or anything.  It's just a life crisis of his own, mostly related to work I think.  Then my father passed from old age/cardiopulmonary failure in 2014, I lost a good friend with melanoma in 2015, and through it all I have been trying to help my husband, in spite of my own constant doctor visits and less than ideal prognosis.  It has been a nightmarish few years. 

I have a friend who mentioned the other day that I should have been working on a bucket list all this time.  She said it kindly.  She wants me to have happy years.  She wants me to live another 50... but just in case, she wants me to have a few bucket list, happy experiences.  So sweet!

You know, it's funny but I have thought of it before and I realize that would be ideal.  Life happens the way it happens, though, and it's not always ideal.

But I got to wondering about bucket lists and how common they are.  I would love to hear bucket list stories.

Maybe I will get to have a few.  Who knows.  I plan to outlive my prognosis!!  But do you have a bucket list?

I have just one:  To return to the ocean for a few days, where I grew up.

The friend I lost to mucosal melanoma in 2015:  She had an amazing bucket list and family and friends who were totally intent on helping her fulfill every last one.  It was so much fun to live through her vicariously!  I guess what I'm wondering is:  For those of you who are dealing with mucosal melanoma (somewhat poorer prognosis, though some of us are defying the odds!) or more advanced stage cutaneous melanoma, do you have a bucket list?  Do you take it seriously?  Are you living it?

Life is not always conducive to this, I know.  Just wondering how all of you are handling this.

Cheri

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susanspotless's picture
Replies 5
Last reply 1/11/2017 - 6:18pm

If anyone remembers my original post of Nov. 18 and/or the follow up of 12/8:

My new Dr. ordered a chest CT because of my hoarseness, shortness of breath and history of melanoma. There is also a history of smoking but Medicare will pay for CTs for a history of melanoma. My Dr. ordered a full body PetScan based on the results of the 1.6 X 1.8 cm. loblulated opacity found on the CT. There wasfocal hypermetaboloic uptake with maximum SUV of 3.9. What concerned me the most  was the background mediastinal blood pool uptake which showed a maximum SUV of 2.3 which is worrisome for cancer.

The Dr. then ordered a CT Guided Biopsy of my left lung, the Dr. conducting the test noted that "Initial pathologic wet read demonstrated cells worrisome for malignancy.". Here is where the ball was dropped and I waited for 3 whole weeks for the tissue analysis. I was patient because of the Christmas then New Year's holidays then the snowfall the people of this region are unaccustomed to, but last night I just got so furious and decided I couldn't let this go another day. I was worried that somehow a lab accident occured ( it has happened to me before).  I called my Dr's office and told the med tech I wanted an answer before the day was over. Three hours later my Dr. called back, he said it is not melanoma, it is squamous cell carcinoma (non-small cell cancer). I asked why the three week delay in getting the results to me for the normally 4-5 day results. Excuses were made for the delay, an aplogy was made and promises were made to arrange for surgery ASAP.

I am researching a new internist just in case there are any more ball-dropping incidents. At any rate, I am happy to report that <b>melanoma has saved my life!</b> If it werent for my history of melanoma the Dr. would not have ordered a chest CT when my only symptom was hoarseness which I BTW, attributed to my chronic hives.

susanspotless

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Aloha14's picture
Replies 5
Last reply 1/11/2017 - 5:11pm

My surgeon decided it was time to drain the 3 groin seromas today.  I'm so glad to have some of the pressure off the nerve on the inside of my upper leg. A compression bandage was put on and I'm continuing to wear bicycle shorts. The surgeon said those were ok if tight rather than buying compression shorts. 

The surgeon said I will probably have to come back a few times to get these drained again and to call in a few weeks. I can kind of already feel some fluid coming back in or else it's swelling from the procedure. Will take a look when the compression bandage comes off tomorrow.

 

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skousal's picture
Replies 16
Last reply 1/11/2017 - 4:43pm

I am 25, had a WLE and SNB, one node had micro-metastasis. Pet scan did not show anything concerning per the doctor. I know I have a few different options now. I can have a complete lymph node dissection (groin) and receive a systemic therpay (doctor said my veins are small and I would need a port) or I could do nothing. I saw Dr. Merrick Ross at MDA and he recommends an aggressive treatment plan. I am a nurse and I work 12 hours shifts on my feet and I fear the surgery will force a career change, which is okay, I just want to be prepared. Any insight, advice or personal stories would be appreciated as I make this decision. I have been reading many of your stories and I hope for the best for all of you!

Thank you, Shawna  

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