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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tedtell1's picture
Replies 5
Last reply 5/17/2018 - 6:51pm
Replies by: maryb-z, marta010

Friends;

A friend who has been undergoing chemo and immunotherapy for another type of cancer said she had been told that doing a double dose of claritin (not d) can help with body aches associated with therapy. You take the doses for a couple days before then a couple days after. She has not tried it yet. Has anyone tried it and did it work? My body aches after infusions are getting really bad...especially my hips and thighs. Would love to find something that could help.

Blessings to all of you warriors,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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dmarie's picture
Replies 2
Last reply 5/17/2018 - 2:45pm
Replies by: dmarie, Hukill

Has anyone experiened dry heaves? If so, what did you do to stop them?  (Please note that we spent the day at the Cancer Center yesterday meeting with his team for this issue, urinary issues, and getting IV fluids for dehydration). 

Husband started getting them occassionally after #2 ipi/nivo combo infusion. It was only a couple of times over the 3 week span. This was, unfortunately, when a nasty cold was making rounds through the family, and he got hit big time - so lots of coughing and feeling yucky (on top of ipi/nivo!). Then, after infusion #3 as cold symptoms were disapating, the dry heaves became a bit more frequent, triggered by either sips of water, sitting at the dinner table, after taking a bite of food, or brushing his teeth. Always preceded by a small cough (tickle in his throat). Often, he could avoid it if he had eaten something or had a smoothie. Now, after last infusion the dry heaves are happening a lot more frequently. Last night he had 3 bouts one after the other from 1 am to 2 am. A smoothie seemed to calm whatever triggered this. 

This is really putting him through the ringer. Does anyone have any experience with this and what can be done to stop it? Docs have no answers. 

(History - dx Stage IV Aug '17 - brain, lungs, liver, bones, lymph / craniotomy 8/'17 for largest lesion / Taf/Mek mixed response, stopped after 5 months / WBR Feb '18, ipi/nivo started 2/28/18, finished 5/2/18)

Thank you in advance for any insight, thoughts, or suggestions.

Diane

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Bria12lane's picture
Replies 14
Last reply 5/17/2018 - 11:57am

I’ve spent a lot of time reading through posts on here and figured it was about time I started being a contributor and utilizing all of you as the wonderful resources that you are! 

I was originally diagnosed with melanoma in summer of 2014. It was located on the left superior helix of my ear. Fast forward almost 4 years later and I was diagnosed with a local reoccurrence in February. I had a WLE and SNB completed on 3/5. Margins and nodes came back clean. Margin however was extremely slim. It has been staged at a IIIB because of current characteristics as well has the primary. For everyone at OSU’s Wexner Medical Center it would normally be a no brainer for me to start Opdivo. The complication is that I’m currently pregnant. 25 weeks along. 

The oncologists at The James (OSU) suggested treating it as a primary and “watching and waiting” and completing full scans after the baby is born. They are hesitant to go forward with Opdivo after the baby is born because they think 6 months after diagnosis the benefits may be strongly diminished and the side effects may outweigh the benefits- as there isnt a whole lot of data out there where someone delayed treatment for so long.

I didn’t feel quite right about this and my dermatologist seemed to share my hesitation. I had a second opinion with Dr. Tarhini at The Cleveland Clinic and he suggested definitely still completing the Opdivo treatment after the baby is born. He went as far as to even ask if I was committed to continuing the pregnancy. He also said that if I completed the treatment he would even feel comfortable with having a 2nd pregnancy 2-3 years down the road. 

I didn’t want to go “fishing” for a contradictory opinion but had a feeling I would get one. I was hoping he would agree as the thought of starting Opdivo 4 weeks after having a baby is quite scary to me. 

I guess what I’m really looking for is-

-Has anyone experienced positive or negative effects after delayed treatment with Opdivo or Keytruda? 

-Insight into real life side effects experience with Opdivo.

-Experience with a Stage III or IV Melanoma during pregnancy. Did you have multiple reoccurrences? Did you have any subsequent pregnancies? 

Thank you! 

Bri

 

Bri Cagnoli

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Anna.helena.gray's picture
Replies 6
Last reply 5/17/2018 - 11:13am

Hi everyone! I'm having difficulty navigating the site so I hope I made it to the right place! I'm up nursing my 2 month old.
I guess I'm posting here because they all the diagnosis and scans and surgery I feel like I've lost touch with the seriousness of a this. The doctors remain positive and that is their job, my family remains uneducated. The shock of the whole thing has worn off and I feel like I'm walking around convincing ppl that this is serious. And maybe it's with off on me... I realize the statistics have changed over the years and aren't valid..
I think I just need to be told by people who are in this that my fears are valid... I feel like I'm being meladramatic with my fear...
I think I just feel alone sometimes and sometimes I feel like I'm making a mountain of of a mole hill. Pun intended.
Oh I'm a mom of 2, son is 2, daughter is 2 months... Daughter was born prematurely to allow my surgery to happen. Stage 3b melanoma.

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VinceMart's picture
Replies 5
Last reply 5/17/2018 - 10:02am

I had been on Keytruda for 3 months then liver progression, then TAF/MEK (short stay due to side effects), now I feel another in transit in my scar.  These in transits seem to keep popping up in my same scar area eventhough I have had 2 WLE and CLND.  Immunotherapy and Targeted Therapy don't seem to be working either.  I am getting discouraged trying treatments only to to see more mets and progression.  I have a CT Scan and appt next week, need some positivity from long term Stage 4 warriors on this site as I am becoming discouraged with what seems like a downhill battle for me. 

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Raco's picture
Replies 2
Last reply 5/17/2018 - 9:16am
Replies by: Raco, Bubbles

Hi, just got my BRAF results, I logged into my care plus to see lab results and it said the following.

BRAF gene mutation results::  Mutation Not Detected

Lab Comments:
SV18-841 A1 Microdissection Sentinel Lymph Node, left deep axilla Previous Diagnosis: Metastatic Melanoma

So I see my Oncologist next Thursday May 17, 2018 for my 4th opdivo treatment.                                        Will this BRAF result change anything for treatment??

Thanks to all for helping me understand.

Robbie

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Julie in SoCal's picture
Replies 8
Last reply 5/16/2018 - 7:16pm

Good day friends!

Up until the last few days I have been enjoying the NED dance, but unfortunately, last week I found a new intransit met. It is in the same area and it feels like all the the others, so I'm pretty sure it's mel.

Previously, I've had IPI and Pembro and watched various intransits melt away only to have new ones pop up.  After failing Pembro I just had them surgically removed.  No problem.

So my questions for you all:

1) should I just do whack a mole and have them surgically removed, or should I pair surgery with something else?

2) if something else, what?  

3) how big of a range is T-Vec's bystander effect?  How far does it go.  If I zapped my current intransit with T-Vec, would it do a regional mop up? Or would I need multiple intransits and multiple T-Vec injections for that.

3) Do I have any other options?

To complicate things, I have had Non-Small Cell Lung Cancer, so I won't qualify for a trial.

Thank you friends,

I wish you peace!

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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From MD Anderson melanoma... this may be some helpful into for anyone newly diagnosed or advanced in stages. If you've got a Facebook account, take a peek: 

https://www.facebook.com/MDAMelanomaMedicalOncology/videos/1624357227633...

http://cancersnewnormal.com

-- Niki

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Jules166123's picture
Replies 12
Last reply 5/16/2018 - 2:15pm

I had a Melanoma removed in November last year and it was stage 1b. I then had a wider excision 2mm which showed cancer cells in some of the skin but there were still a 1mm clear margin my scans salons came back clear so although they said I was now stage 3b I did not need further treatment. I am now on 3 monthly checks and 6 monthly scans. However recently my scarring tissue has started to itch and when looking through a magnifying mirror I can see several dark spots on it. Should I be worried? I see my skin specialist on 20th April (it is now the 4th) can it wait till then to be checked? 

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steph4746's picture
Replies 6
Last reply 5/16/2018 - 2:14pm
Replies by: steph4746, KAF, BillB, Bubbles, ed williams, Anonymous

Hi everyone!

Ive been reading here on a regular basis for almost a year now and I guess I finally feel ready to jump in and join this amazing community. I’ve learned so much from all of you since my diagnosis and I’ll be forever grateful to you all. 

I’m a 44 yr old female who was diagnosed with stage 4 metastatic melanoma (unknown primary) one year ago. Initially I thought I was coming down with pneumonia and went to my local urgent care office. Rather quickly I was rushed by ambulance to a major hospital where they thought I was either having a heart attack or had a collapsed lung. Soon after it was discovered I had dozens of pulmonary embolisms. After a lot of tests being run, it was determined that I probably had cancer and I had surgery on a swollen lymph node in my groin (I thought the swollen lymph node was an exercise injury). Anyway, a week later I was diagnosed with melanoma (small met in my groin lymph node and a larger met (3cm) in my pelvis) and of course my life hasn’t been the same since. 

I’m BRAF positive and started with Taf/Mek. I was on that treatment for 8 months before my scan showed a tiny uptick in cancer growth near my groin lymph nodes. Since I’m on a clinical trial it dictated that I make the switch to ipi/nivo at that point (the trial is to determine whether it is better to start w/ taf/mek or ipi/nivo and the computer randomization chose taf/mek for me first).  

So, now I’m on the ipi/nivo portion of the trial and I just finished my fourth combo infusion one week ago  I have had some rough side effects (folliculitis- all of my hair fell out, dermatitis, dry mouth), but my last does was the real kicker.  I developed a severe headache last Thursday and this mornings MRI confirmed our suspicions that I now have Hypophystisis (inflamed and enlarged pituitary gland).  I started a round of prednisone this morning (which immediately took away the headache!) but also will delay my getting to the just nivo portion of my treatment.  Fortunately for me I have felt pretty good during this entire year and have been able to fold the treatments and side effects into my daily life with a certain amount of ease.  I live in the Portland Or area and am receiving amazing care. (My mel specialist is Dr Brendan Curti, plus I see Dr Nicholas Barber for regular appointments)  

Once again, thank you all so much for your encouragement and wisdom. It truly is a lifeline to me and, I’m sure, many others.

 

stephanie 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/16/2018 - 12:33pm

Has anybody found relief from joint pain, specifically knee pain due to Keytruda? I have been off Keytruda due to joint pain and being NED since October of 2017 after 13 treatments. I was put on low dose Prednisone to slow my immune system down and then my melanoma expert rheumatologist prescribed plaquinal and hydroxychloroquine which after 2 1/2 months I had to stop because my liver enzymes went sky high and the combo failed to give me any relief. A cortisone shot in my knee was short-lived. I’ve done physical therapy, water exercise, purchased new orthotics, taken tumeric, CBD oil, ibuprofen,  acupuncture, chiropractics, rest, ice, heat, and compression sleeves. Both knees are inflamed and it is painful to bend my knees, walk, climb stairs and sleep. Any suggestions out there? 

Jackie Trimmer

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I had been on Keytruda for 3 months then liver progression, then TAF/MEK (short stay due to side effects), now I feel another in transit in my scar.  These in transits seem to keep popping up in my same scar area eventhough I have had 2 WLE and CLND.  Immunotherapy and Targeted Therapy don't seem to be working either.  I am getting discouraged trying treatments only to to see more mets and progression.  I have a CT Scan and appt next week, need some positivity from long term Stage 4 warriors on this site as I am becoming discouraged with what seems like a downhill battle for me. 

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Jlpendley's picture
Replies 4
Last reply 5/16/2018 - 12:14am
Replies by: budeny, Jlpendley, KellyH, Janner

My husband had a mole removed from his back that grew quickly I think it was bleeding and scabby. I am not sure if it was an existing mole he had for years or a new mole. Its seemed to happen so quickly.  It came back as melanoma.  I instantly went on the internet to look up information and now I'm paralyzed with fear.  He has an appointment with the sergeon on Wednesday and his dermotologist said he may remove more of the area around it.  That is all the information he was given except that he will have to go back to the dermotolgist for 3 month visits. I'm so afraid that the doctor on Wednesday is going to say he is stage 4 and only has about 6 months to live, like some of the stories i have read on the internet. 

Jennifer pendley

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HeidiZ's picture
Replies 5
Last reply 5/15/2018 - 8:46pm

Hi All, I feel like I know everyone because I've been coming to this site for good information for awhile but this is the first time posting. I'll try to summarize as much as I can because it's a long story.  2013 a new co worker has a young husband diagnosed with stage 3 melanoma.  Shortly after that he advanced to stage IV and then July 2014 my co workers husband succumbs from the melanoma.  Ippi didn't work for him and by the time he looked into trials it was too late for him.  September 2014 I find a mole on my scalp not the derm because he never checked my scalp during full body checks so I show it to him, tell him how concerned I am because my friends husband just died etc.  derm tells me the mole looks fine and doesn't need to be removed. He said they don't take things off just because it can become something and also says you know what the chances are that you would have melanoma?? Well 7 months later guess what, I ask my daughter to take a look it again and now it's all black. Go back and get it removed punch biopsy size was 2mm, mitotic rate 3. Schedule my surgery end of May, two nodes from neck removed and one node had a protein that melanoma cell would make and other one was clear. So stage 3a now going for 3 month follow ups including ultra sound of my neck basin to check nodes for melanoma plus going for scans and body checks. During one of these checks the technician finds nodes on my thyroid which turns out to be papillary thyroid cancer. Within a week of that diagnosis I find a lump in my neck which turns out to be melanoma. So now its November 2015, I have a complete lymph node dissection with 55 lymph nodes removed and my whole thyroid is also taken out. Now stage 3c melanoma. Still watching and waiting, February 2016, ct scan shows lesions all over my liver, spleen and in my neck and behind my ear you could see many black spots of cancer. Now stage IV.  Start ippi/nivo March 2016, got through all four doses and then continued on with 16 does of keytruda thereafter up until August 2016. Things got smaller and things seem to be stable for the most part  but ct scan still showed lesions on liver.  I started to get a lot of side effects so Dr order my first ct/pet scan in December 2017 and it showed 3 nodes lighting up in my neck so we weren't sure if it could be melanoma or possible thyroid cancer spread. Well glad to report my latest ct/pet scan last month showed no uptake, nothing lit up and the nodules got smaller!! Finally some really good news!  So it's beeen a crazy 3 years but I'm hoping things will only continue to get better and I will be able to call myself a cancer survivor at some point. For now I can take breather for a bit and then I go for my scans again in August. I also have to be vigilant on checking my scars for any abnormalities too. Just keep fighting everyone. Much love to you all, HeidiZ

 

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

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