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 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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Jubes's picture
Replies 19
Last reply 1/15/2017 - 11:21pm

Hi all

i have just had a PET three months after my lung surgery and it is CLEAR. 

Thanks to you all, as I never make a decision on my treatment without referring to this forum

just have to deal with my spondyloarthritic side effects from keytruda now but even that doesn't worry me now

anbe-Louise 

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Buddy0513's picture
Replies 19
Last reply 1/15/2017 - 12:38am

Hello everyone,

Just a question to anyone that is on this part of the treatment. My mom made it through her 4 infusions of Ipi/nivo, about a month ago now she started the maintenance period of just nivo. Ever since she started this, she has been extremely fatigued almost to the point where she can't function. She had some fatigue and sickness while on Ipi/nivo, but since the nivo it has been twice as much. All of her major bloodwork (such as thyroid and liver enzymes) have been coming back fine. She stopped her prednisone and is currently on lasix to help reduce the massive amount of swelling she has from prednisone (she gained well over 10 lbs at this point, was on it for over 2+ months).

I was just curious if anyone else had this same experience with the fatigue? And if they did, what did you do to help offset/control it? Any insight about this is helpful. Her oncologist said that this is normal regarding the Nivo, I just haven't really heard about it before so I am getting nervous. 

 

P.S. He also called for her first CT scan of her abdomen (where the tumor originally was) next week. I am assuming those results will be in ASAP since they want it before her next Nivo treatment (not really sure why)...Needless to say I have been sick to my stomach all day about this!! I will keep everyone updated...

Melissa

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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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adriana cooper's picture
Replies 5
Last reply 1/14/2017 - 2:26pm

The results of last weeks scans are back. Adriana now has a blood clot in the iliac vein and now gets to enjoy a lifetime of daily self inflicted blood thinner injections or oral medication, YAY. According to the Dr., cancer patients have thicker blood and are more prone to blood clots, in fact SCCA has an entire  unit dedicated to it's management. Adriana’s' comment to me “I don't recall reading this in the brochure when I was thinking about signing up to have cancer.” I reminded her, that was the 2012 brochure and that they have added features since then in order to  keep people interested and to recruit new members. She must have received this upgrade as a complimentary trial, but now it's time to start paying for it.

In addition, the reports have noted a sub-q that has increased in size since October 2015 as well as increase in size of  three  mets in the brain (one now classified as a mass at 1.3cm and two as  subependymal nodules) since August 2015 none of which were  ever noted by the radiologists at the time. In fact, when Adriana was diagnosed with LMD in October, the nurse practitioner reinforced the fact that there was no evidence of involvement on the latest MRI.

It appears that the BRAFi was only partially effective this time around, as this apparent progression was on their watch although they were responsible for alleviating Adriana's debilitating pain for which we are grateful. With the discontinuation of the BRAFi part of the mix her swelling seems to be improving (time will tell) and she will be continuing on Pembro only for now in hopes that it will have some affect on the brain. The Dr. does not favor additional gamma knife at this time as it would interrupt the Pembro although we have requested that the neurology department review her situation.

Luckily her blood labs have returned to normal.

You can always count on The Beast to provide new adventures.

Best wishes to all.

Rob and Adriana

Adriana

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AvaL's picture
Replies 3
Last reply 1/13/2017 - 4:54pm
Replies by: AvaL, Bubbles, jennunicorn

Hi all,

We've just found out my stage 3a hubby's tumour was positive for BRAF mutation. I know this is good in terms of if he he ever needs treatment at stage 4 he will have more options now. Do you know if it means anything in terms of the cancer though (e.g is it any more aggressive? Or does it act in different ways?). I can't find much on the net to read about it, other than implications for treatment x

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momof4boys's picture
Replies 12
Last reply 1/13/2017 - 4:43pm

Good luck today, praying for good scan and another infusion. Keep your head up!

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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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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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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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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 - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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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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Michelle820's picture
Replies 6
Last reply 1/11/2017 - 5:44am

Hi, I have an appt scheduled next Monday for body photography. Of course I am very hesitant! Has anyone had this done here? Will I be completely without clothes? Of course my recent WLE area is above my left breast:/ I am very nervous, mostly embarrassed.  Hate to say this is one of the main reasons I avoided full body checkups at my derm...only went for problem visits...which led me to my current situation (had suspicious tiny black "freckle" looked at which was a melanoma in situ). I have a million freckles and moles. Plus a strong history of basal cells.

thank you for any info or suggestions you may have!

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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. Receiving treatment @The Angeles Clinic

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