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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Replies by: Mat

Something to look for in 2017 and beyond.

http://wlns.com/2017/01/04/melanoma-drug-breakthrough-at-msu/

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jennunicorn's picture
Replies 16
Last reply 1/6/2017 - 12:15pm

Just wanted to update for others who might come accross the same issue:

Last night my fever was back with 102.7. I maxed out on the amount of Tylenol I could take so I just had to do everything I could to cool down. My body has not been sweating with fevers.. which seems abnormal.. just a dry hotness with chills and aches.

My onc is out of town but I was able to talk with another mel onc there and they want to hold off on doing steroids just yet. I don't have any other symptoms and blood work was normal couple days ago, so they don't like to jump on the steroid wagon if it's not neccessary.

So, he told me to use Aleve instead of Tylenol as it lasts longer and might work better. He is sending a prescription for Prednisone to my pharmacy for 10mg tablets and said if I can't control the fevers with Aleve at all and it gets really high, then I will have the steroid on me and I can start at 10mg once a day and go to 20mg if the smaller dose doesn't work.

He said patients who have gotten fevers like this with no other symptoms usually get over it in a few weeks. Which sounds like torture if it lasts that long... since it always happens at night and very early morning, so I have not been able to sleep very well at all, I am exhausted.

Thank you to everyone who posted on my last thread, it helped a lot knowing this is not that unusal and it's not neccessarily from a more serious side effect.

Let's hope this means good things going on inside! 

 

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

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jkall's picture
Replies 10
Last reply 1/7/2017 - 2:17am

My son is 35, with Stage IV Melanoma (primary stage 1a removed from back 5 years ago).  He was just diagnosed in August, 2016 with metastasis to brain, lungs, liver and lymph nodes.  About 2 weeks after diagnosis he suddenly couldn't walk and started having severe neurological signs and symptoms. He was found on MRI to have nodules and tumors up and down his spine and was diagnosed with leptomeningeal carcinomatosis.  This is basically melanoma meningitis of the cerebral spinal fluid and the prognosis is very grim with median life expectancy of only 10 weeks after this diagnosis.

His oncologist immediately started him on Tafinlar/Mekinist combination.  He had been scheduled to begin immunotherapy before this development but that was not possible with the LC.  He is having an amazing response to the Taf/Mek!!  His most recent spinal mri showed the spinal tumors have "resolved"! Liver nodules are gone too. All other tumors in brain, lung and lymph nodes have shrunk dramatically.

So now the plan is to stay with the Taf/Mek a couple of months longer, then start Yervoy for 12 weeks. 

I wanted to share this story to give encouragement that even with the most dire diagnosis, these days there can be hope.   My son went for a hike in the mountains a few days ago to celebrate the New Year. He said it took everything he had to hike up the final steep slope, but he made it . . . he made it. 

Love, best wishes and hope to you all.

Jill

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/5/2017 - 1:46pm
Replies by: timandpaiz, Janner

I'm 22 years old and here lately my mother has had some concern over a mole on my back. It's light brown with a dark black spot in the center. It's textured, not flat and uneven around the edges. She says it's changed but I can't really see it because it's directly between my shoulder blades. I got a referral to a dermatologist over the phone yesterday now I'm waiting on the appt. What are some things to ask the Dr? What are the possibilities that it could be melanoma? Did you have pain in your underarms?

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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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Toby0987's picture
Replies 12
Last reply 1/10/2017 - 8:51pm

Had my PET yesterday (3b from 2013). I normally see Dr Mcwilliams but Dr Markovic came in to discuss results. I have heard he is the man at Mayo when it comes to melanoma. I had never seen him before and was afraid he was coming to give me bad news. The PET showed bright red near my appendix/intestines. I was thinking that I was going supernova. Markovic ordered a MRI but it was 530pm so they were shutting down. Definitely a restless sleep last night. Got in to do the MRI at 630am today and after an hour they cut me loose to head home. Got the call from Markovic at 5pm that it was not melanoma and after discussing it with the radiologist team and Mel team the attending radiologist reeled his initial call back in after they went over both the PET and MRI together. I'm relieved to say the least. He said there is a nodule on my lung but it is nothing.  

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Aloha14's picture
Replies 5
Last reply 1/5/2017 - 5:52pm

The good news is No Melanoma seen.

This is what the PET says about the groin lumps:

Along the lateral aspect of the left lower extremity there is linear
increased FDG activity along the surgical margin compatible with ongoing
healing from recent surgery. SUV max for this site is 3.0.

Within the left inguinal region there is postoperative changes and
low-grade FDG activity surrounding a seroma as well as at the surgical
incision margin best identified on image 281 with FDG SUV max of 2.6. There
is also a large fluid collection suggestive of seroma versus lymphocele
best seen on image 287 measuring 4.5 x 5 cm. 

This is what the ultrasunds say about the groin lumps:

In the ventral left superior/proximal thigh subcutaneous soft tissues, the
subcutaneous fat appears heterogeneous, compatible with diffuse
subcutaneous edema. Color-flow evaluation demonstrates several scattered
small foci of vascularity, without significant hypervascularity to suggest
cellulitis, but please correlate clinically.

In the edematous left superior/proximal thigh tissues, corresponding to the
apparent multilobular fluid collection seen on the non-contrast
attenuation-correction CT of the same-day PET-CT, there are 3 main
avascular fluid collections seen (measured by the sonographer as follows):

1. The most medial collection is the smallest collection, measuring 2.8 x
1.0 x 1.5 cm. On video image 12, there are a few subtle internal linear
echoes which may represent internal fibrin strands in a seroma.

2. Next most medial and largest collection also appears more
multilobulated, extending more superiorly/cranially and more superficially
(as superficial as 0.3 cm deep to the skin surface), measuring 3.8 x 4.1 x
3.0 cm. On initial video images, there are more numerous internal linear
and low-level echoes, compatible with an evolving hematoma/seroma.

3. The most lateral and second largest collection is associated with
echogenic surgical clips and has rounder shape, and also extends more
superiorly/cranially, measuring 3.6 x 2.5 x 2.9 cm. This collection appears
more echolucent than the largest collection, compatible with a more
liquefied seroma.

Anyone understand the reports?

I scheduled an app't next with the surgeon not the resident to find out if she still thinksthese will just get absorbed on their own. 

One more thing,

The Ctscan portion (non contrast enhanced) only and picked up a 4mm  middle lobe pulmonary nodule on my lung.This is really causing big anxiety for me. I've never had a scan of my lungs however this seems to close to when I got the melanoma. I'm thinking I should have a CTscan to check this out. What do you think? Do lung nodules turn into Melanoma?

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Mat's picture
Replies 3
Last reply 1/6/2017 - 6:42pm
Replies by: Bubbles, Tim--MRF

Tim et al., since I haven't said it in awhile (and since I recently made my modest annual donation to MRF)--your spam filter sucks.  Please get it fixed.

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Scooby123's picture
Replies 13
Last reply 1/7/2017 - 2:49am
Replies by: Scooby123, debwray, Anonymous, miaka618, Buddy0513, Janner

Hi all , sorry this is a question to all the ladies dealing with Mel, but any one who can give advice .

Has I posted before Christmas my scans was a call from consultant and said he could not see any change but still awaiting full report. Going tomorrow for full report. One thing he did mention was both my ovaries was enlarged. I am 49 and my monthly cycle has been hit and miss for the last year. Was not sure if it is menapause or stress worrying. My GP said to me there is cysts on both of them, but I am worrying after reading Mel can spread to ovaries. Plus it also said most enlarged ovaries are usually cysts unless you have gone through menapause or history of spreading cancer. 

Has anyone experienced cysts on ovaries around menapause age. I am hoping due to my cycle change it is due to this. I have asked it to be checked from my GP awaiting appointment now.

Thanks guys for support.

scooby

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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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Anonymous's picture
Anonymous
Replies 5
Last reply 1/4/2017 - 10:51am
Replies by: Janner, debwray, casagrayson, Anonymous

Hi I am really looking for words of reassurance. I was diagnosed with melanoma stage 1 in 2014 0.6mm Breslow depth. WLE was clear. I had appointments with dermatology every 3 months then every 6 months and was discharged from there. I haven't really thought about it until recently when I noticed a traumatised mole which turned out to be nothing. Since then I can not stop thinking and reading up on chances of recurrence. I have read so many stories of early stage melanomas which have returned years later in the lung / brain etc. I am 28 weeks pregnant and feel like I can not look forward to anything for the fear of recurrence. I've also read that pregnancy itself may be cause of recurrence. I feel like I am just in a waiting game until it returns one day & can not function properly. It is all I think about all day every day. I feel like I have a death sentence hanging over me. Please can somebody advise how I get back to living life without this fear or am I right to be thinking this way? 

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snow white's picture
Replies 11
Last reply 1/5/2017 - 4:11pm

I can't stop thinking about him.  Anyone have any news at all?  

Hope you are all hanging in there!

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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jennunicorn's picture
Replies 23
Last reply 1/4/2017 - 8:30pm

I will first say that I will be calling my onc's office in the morning if I still feel this way, and will email if I feel better but still want to let them know.

Just wondering for others who have been on or are on the Ipi/Nivo combo and have experienced low grade fever, body aches, and chills.... did you find a cause, if so what was it? How long did it last?

I had my 4th dose on 12/29 and have never felt this before. Appetite was gone yesterday and today, I've had some on and off appetite loss throughout the combo, so that part is not new. Now I have a low grade fever, 99.2 last time I checked and my body aches pretty bad and chills are not fun either. I got a flu shot a couple of months ago, so I don't think I have the flu.

My labs last week showed very slightly high white blood cell count and slight anemia. Onc wasn't concerned. She asked me if I had been feeling sick and I had not.. until now.. that was 5 days ago.

Any insight would be great, thanks!

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2017 - 2:07pm
Replies by: Hukill, Everymoment, Sophietx, Janner, Anonymous

Hello all,

i was recently diagnosed with stage 1A melanoma at

0.3 mm thickness 

mitotic rate of 0 

no microlesions

no lymphatic or vascular invasion 

with regression present 

I only seem to find so many negative things about low risk lesions spreading and I'm so scared this lesion is going to spread. I just need to hear some positives about people that had small lesions taken out and are not having anymore issues years down the road. I feel as if I'm heading for something that I can't stop. Any answers would be appreciated thank you..

 

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Buddy0513's picture
Replies 3
Last reply 1/3/2017 - 8:19pm

Hello all,

I haven't been on here lately to post, just been reading when I have time, but I thought I would give an update.

My mom completed all 4 infusions of the ipi/nivo combo, after some delay of the last treatment due to side effects. She has been on prednoisine (spelling..??) for a few months now. She is swollen to the point where she is in pain and can barely put shoes on. Her rash has been to the point where it basically overtook her entire body and she had such itchiness that even the Benadryl wasn't working. They upped her dose of the steroid multiple times (it was over 70mg twice a day at one point). She stopped the carbo/taxol about 2 months ago. After the first infusion of the chemo, about a week later she had lost about 10 lbs. Her stomach (the primary location of the tumor on her ovary which was grapefruit sized), had basically gone back down to normal size and she could now function normally. All of us, including the Dr, cannot believe how fast this happened. After completing the 4th dose, she just had her first dose of the nivo for the maintainence phase of the treatment.

No scans have been done yet. My only assumption as to why is the primary tumor, which I think was the only tumor, we know had shrunk after the chemo/immunotherapy combo. The Dr. did mention scans in the new year and having her on a scan schedule for however long after that. She is only currently approved for the nivo period until mid-March, so I am unsure if that will be extended or not.

I had to return to school since my program is so competitive if I take anymore time off I may not be re-admitted. I am nervous to leave my mom alone, but she has been able to drive and function on her own ever since the dang tumor shrunk anyway! The Dr kept telling me not to worry and mom would be fine. Nurses keep saying they have had a lot of luck with the ipi/nivo treatment, especially with side effects similar to my mom, but I guess it is in my sole duty to continue to worry! 

I have been following the site from time to time, I continue to pray for all of you on this site! My neighbors as well who are good friends of my mom have also been keeping everyone who is diagnosed in their prayers (I would share stories about this site frequently to them), especially since the one neighbors son has been battling lung cancer this past year. 

I also wanted to say thank you to those who have followed my moms story and have been supportive along the way. This website has been a lifesaver for me and her, especially since we had no idea where to go once she was diagnosed. Through this site and learning about melanoma specialists, along with speaking with many who area dealing/dealt with melanoma, saved her life since our current Dr said she would have been gone 12 weeks ago. (The first hospital we had been to basically didn't deal with melanoma and was going to give her the wrong treatment). She ended up making it to her birthday and to the new year. Now we are planning for her to visit me over my break. As I cry and type this I just wanted to say thank you to all once again. Hopefully the new year and her scans will bring us good news and I hope the new year brings good news to all of you who are fighting as well.

Melissa

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