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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rabbits68's picture
Replies 7
Last reply 4/10/2017 - 3:13pm

Yesterday was my screening at NIH for TIL trial.  I was impressed with the campus and staff, but I didn't qualify for the trial.  My blood work did not meet the requirements, mainly my white/ tcells and liver counts.  They didn't feel like my cells would grow or be viable for the treatment.  I was disappointed, but glad I went.  I guess we will next go to Sloan Kettering for other options. My physician is considering some type of combo therapy like ipi/nivo but wants a melanoma specialists to see me.  Still hoping and trusting there is something out there for me.  God's Got This!

LisaG

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Sbdeutsch's picture
Replies 20
Last reply 4/14/2017 - 4:57pm

Last night Juan Victoria passed away. The Ipi just couldn't start doing its job fast enough and the disease burden was too much, his lungs couldnt keep doing their job. Its been a long hard battle. This board and the people on it have been a life line to us as we have gone through the few ups and mostly downs of this horrible disease. Thank-you all. Also Dr Jason Luke as his primary oconlogist was there every step of the way. 

 

I wish all of you luck as you fight this horrible disease and look forward to the day when a cute is found. 

 

Stacey, love and wife of Juan Victoria

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Jubes's picture
Replies 25
Last reply 4/14/2017 - 5:01pm

Hi all

after my lung resection in November (lower lobe) I had a pet in January that was clear. My oncologist has organized 3 monthly pets for this year and if I make it clear to 2018 we will move to 6 monthly. Well the good news is that this weeks pet was clear so 5 months after the op I'm still NED. However severe joint inflammation still evident on the pet. I have been on sulfazalasine for a few weeks and waiting for it to kick in and managing to keep working so I am over the moon happy. Hoping for positive results for all of you wonderful supportive people who I rely on so much for help and information

Anne-Louise 

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Anonymous's picture
Replies 4
Last reply 4/14/2017 - 5:17pm
Replies by: debwray, marta010, tschmith, Anonymous

I've been referred to a palliative specialist despite having a fairly low disease burden. I have pain in one area where I had surgery, but otherwise have had very few problems with treatment. Is this a common occurrence? How many people have had this happen to them?

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miaka618's picture
Replies 4
Last reply 4/6/2017 - 10:23pm
Replies by: maryb-z, MikeW, miaka618, DaveNB

My Oncologist informed me that he is moving on in June so I need to find me a new doctor. Does anyone know of a good Melanoma specialist in the SE WI area? I found a couple doctors through a search, but unfortunately my insurance does not cover them. My current oncologist is in Madison, but their billing department has been a nightmare. I would really like to find a good doctor within the Aurora system. I haven't had any issues via insurance with them.  I don't think my insurance will cover any doctors out of state.

Thank you for any help you guys can give.

~April

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TexMelanomex's picture
Replies 21
Last reply 4/11/2017 - 12:23am

I just got to view my path results on my MD Anderson account...not sure why they do this without calling first BUT not to detract from the results...

Finally some good news! All 4 lymph nodes were clear and all surgical margins clear! Its weird I should be celebrating right now but not quite ready to let me guard down too much. I was prepared for battle and Im not sure if the battle is coming any time soon...does that sound crazy?

In any event, I'm glad I can share some good news on here tonight. I will post more after talking with Dr. Ross tomorrow. For tonight, Stage II is as far as it goes!

 

Tex

Tex

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Christine.P's picture
Replies 5
Last reply 4/6/2017 - 1:11pm
Replies by: Bubbles, Christine.P, UBContributor, Anonymous

It seems I've been asking a lot of questions lately and I'm so glad you all are here to lean on. 

I just found out that my cancer has spread (primary tumor was lower right calf (2015) and I just recently had a new tumor removed from just above that area). The report said there are multiple new cutaneous and subcutaneous lesions in my calf, thigh, hip, and lower right back. Intense uptake also reported. 

My question is this. If the lesions were in an internal organ, would the report state that? I'm wondering specifically about the lesions in my lower back. Does the PET scan specifically identify if the lesion is in an organ or are there more tests that need to be done for that? 

I don't know what is next. I completed 3 rounds of ipi/nivo and have been on just nivo for about 9 months since the combo. Are there other drugs to try now or will I need to find a clinical trial? 

Thanks for your support. I am scared.

Christine P. 

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/2/2017 - 11:09pm
Replies by: jahendry12, LHiner50, Nick C, MikeW, Anonymous

I am wondering if others have nausea, decrease ability to do exercise and shortness of breath??

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/3/2017 - 3:26pm

My oncologist seems to think that being BRAF positive means nothing in terms of the disease as far as we know at the moment other than treatment options are different. But I've heard elsewhere that BRAF + means the disease is more aggressive? Is it more likely to spread from stage 3 to stage 4? 

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Scooby123's picture
Replies 2
Last reply 4/3/2017 - 2:06pm
Replies by: Julie in SoCal, Jubes

Hi all,

I had ippi 2 years ago and get pain in my joints especially in both rib cage area. The pain comes and goes. I know joint pain has been mentioned a lot over time with treatments, but anyone has had it in rib cage area which comes and goes. Can last a few days some times. At times I feel like I have been in a boxing ring so sore .

Scooby X

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Bubbles's picture
Replies 7
Last reply 4/14/2017 - 5:24pm

Hoping that the diarrhea and other difficulties have improved????  Holding you both in my heart each day.  c

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baesill's picture
Replies 10
Last reply 4/4/2017 - 8:53pm
Replies by: Ed Williams, Anonymous, SABKLYN, Mat, jennunicorn, baesill

Hello everyone,

I am 33 years old and was just diagnosed with stage 4 melanoma, 7 years after I had stage 2A.

I gathered 3 opinions in NYC to kick off treatment. A veteran at NYU and another veteran at Penn both had same recommendation. I met with the young rising star at MSK and he had a different suggestion, but after he ran it by the higher ups, they changed the recommendation to match NYU and Penn.

I can't help but feel he got it "wrong" in our initial appointment and it makes me really worried about choosing him as the lead on my case. I know doctors are going to disagree, but the other veterans assured me this first choice was a no brainer. And if my oncologist is going to be lead on managing side effects of potentially dangerous therapy, maybe it's not wise to rely on someone with less experience.

All that said, I really want to start treatment now that the path forward seems clear (for now).

Has anyone switched oncologists within MSK before to a more senior doctor? Is it easy to use MSK for second opinions down the line, if you choose to have your primary oncologist at another institution?

I guess I am trying to figure out if it's easier to switch doctors within MSK...or if it's better to choose someone more senior at another institution and then try to switch back to MSK (with different doctor then my initial appointment) after I get my 6/12 week scans. Or does anyone have advice about getting second and third opinions after those scans?

I have this feeling that now that I've met with one doctor at MSK, it's virtually impossible to change within the team.

Just want to say thank god for everyone on this board! I feel so devastated that I can't get an oncologist I deeply trust at the institution I want to be at. Any advice would be so amazing!!

Lots of love to all.

 

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/15/2017 - 4:46pm
Replies by: Anonymous, debwray, Bradley75, Aaron

Has anyone experienced the development of cellulitis as a side effect to ipilimumab?

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Hikeratheart's picture
Replies 4
Last reply 4/10/2017 - 5:59pm

Hi all, 

happy to report negative results for two "bumps" I had on my leg and groin. At stage IIB, 2 primaries, I'm continually monitoring. 

I have a question about monitoring: I see a Derm and surgeon who have lots of experience with melanoma, but how do all of you determine if someone is a specialist? I don't think we have one in Milwaukee, and should I see one at this stage. I may need to travel, but for skin checks, and biopsies?

Also, I went in for a post surgeon appt today (same dr who biopsied my two bumps), and as long as I was there I asked him to look at two new areas. One dime size (itchy at times) irregular shape, waxy appearance spot, on my left forearm, and a pimple like spot near my primary, left upper arm. He said he could take them off, no problem.  My next skin check is 5 months away.

Should I just get the two spots cut out? Would they need to biopsied first?

I also had a primary on my back in July 2015,  and while in for my skin check up last month the derm saw a spot near that primary that looked suspicious and gave the area a shot of nitrogen. The thing is it touched my ( now healed) incision! I also didn't look before the PA gave the treatment. Which I regret.  What if it was Mel? It has scabbed over. Is it common for a spot to appear near a primary almost two years later.?

i feel like I have a handle on this skin ck stuff , but am really afraid I'll miss something. Or should I be concerned less about spots, and watch for changes? Please advise.

thank you

kathy

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