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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Wifewithquestions's picture
Replies 1
Last reply 3/20/2017 - 2:33pm
Replies by: ToddG

My husband is on the taf/mek combo and on his second month with a reduction in dosage last week. My question is regarding side effects. My husband has a sensitive stomach to begin with, but has been having all day diarrhea and sharp pains in his large intestine area. It's so hard to see him suffer for days on end. Has anyone had stomach issues with this combo and found some relief? The dosage has been reduced to try and help but the pain and mass exodus of his stomach started again this morning. 

Thank you

Andrea roy

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/20/2017 - 1:11pm
Replies by: Anonymous, geriakt

Has anyone done laser treatments (Fraxel) or other treatments to reduce the appearance of scars from complete lymph node dissection? Especially would like to know if anyone did this for a scar on the neck (from behind ear down to center of lower neck)

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betsyl's picture
Replies 13
Last reply 3/20/2017 - 1:03pm

Hi,

I'm Betsy, wife of Tom, who was diagnosed this past January with subcutaneous stage IV, no known primary, BRAF negative.

As far as the scans show, there are two subcutaneous masses, with no mets to organs.

Tom has received his first infusion of Keytruda, with the second infusion happening tomorrow. Tom is under the care of Dr Sunil Reddy at Stanford.

We plan to ask Dr Reddy this question, but I'm wondering if anyone here has insight into why monotherapies are offered in favor of combo therapies? I mean, why not attack the cancer with multiple immunotherapies? 

If Keytruda helps the T-cells be more effective, why not AT THE SAME TIME also work to increase the number of T-cells in Tom's body?

I don't get it.

Thanks in advance for your thoughts on this. I've been lurking for a while, and I'm in awe of your strength and courage.

Best wishes to all of you!

Betsy

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David McCaw's picture
Replies 4
Last reply 3/20/2017 - 11:11am

Help, I need input from group on non v600 braf.  I have k601n and my oncologist is prescribing zelboraf and cotellic.  Dr. Flaherty was cautioning zelboraf could promote tumor growth with k601. The plan is to only use mek inhibitors to start cotellic and if required use zelboraf.  Anyone else use mek inhibitors for non v600, perhaps trametinib for something close to k601.  Any data on these options? Can someone provide me with dr. weber and dr. wolchok email addresses.    Thanks in advance.  Looking to start  next week.

David, ( Stage 4, mets lung and liver)

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Dina108's picture
Replies 18
Last reply 3/20/2017 - 5:35am
Replies by: Sailor, Becky, CindyCo, Dina108, Bubbles, Anonymous, coltbnme, jyc

hi All: 

Just yesterday the doctor informed me that I have mucosal melanoma in my sinus (ethnoid). I had no symptoms, except for what I thought were sinusities--stuffy nose,slight nosebleed. now waiting for PET scan. Im in Richmond VA. Does anyone have any suggestions for support groups here. 

Please let me know what I should research -- everything is so overwhelming and in reading the posts, there are so many acronyms that pretty soon I am sure I will master. 

What should I expect in terms of testing -- they have the PET after which the treatment protocal will be set. 

What are some cutting edge treatments out there? What should I ask the doctor? No idea what questions I should even be asking. It's been a roller coaster ride. 

Any help and suggestions would greatly appreciated. 

Dina

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/19/2017 - 10:22pm
Replies by: Anonymous, Bobman

Back in December I had a funky looking growth on my hand. I was concerned it was a non pigmented melanoma. Had a shave biopsy and it came back as a wart. Great, right? Well I scheduled a full body skin check with the dermatologist and had that in February. I have a fairly large amount of moles. I hadn't had a full skin check in probably 10 years (I'm 35 now).

This derm had never seen my moles before and pointed out quite a few that she wants to biopsy. Like, almost 10. Now I have had all these moles for at least 5-10 years and I have noticed no change in them. Should I proceed to have all of these biopsied? What are the odds of these being melanoma if they've been around for at least 5 years. I'd normally like to proactive but it's so many biopsies!! Any advice??

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keepthefaith11's picture
Replies 17
Last reply 3/19/2017 - 6:33pm

Hi everyone,

My dad passed away peacefully this morning. My mom was right there with him. Even though his brain tumors had gotten better from treatment his brain was clearly damaged.

Yesterday morning he ended up with pneumonia and sepsis. His oxygen level was only at 65% even with oxygen support.

The doctors are saying that the damage done to the brain was a combination between treatments and the numerous seizures he suffered. They had never seen a case like his and can't really understand what exactly happened.

At the end he was barely responsive and was getting gradually worse with each passing day.

I want to thank you for all your support in the past nine months. Much love to everyone and I will keep you all in my thoughts and prayers.

Annie

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Shaneswife's picture
Replies 3
Last reply 3/19/2017 - 6:14pm

Well I took Shane for a regular old eye exam to get new glasses and they saw what is a suspected metastisis in his eye. Thank goodness we already are seeing the oncologist and radiologist on Monday. The plan was to get radiation on the big sub q in his side/back and get spinal radiation at T8 T7 and L4.

Now with this development I'm not sure if the plan will change. They may have to do occular radiation. Mets to the eye are very rare but shane seems to get all the rare stuffor in his cancer journey.

He's 8 months post open from a clnd and 2 days ago the incision developed a hole and pus was coming out. So onto antibiotics he went. The hole has gotten Bigger so I hope it closes up once the infection is gone.

And lastly a bit of good news. PMH reviewed Shane's latest brain MRI and doesn't think there is progression. It's all tissue death making the tumor look bigger. So while not shrinking, he hasn't progressed in the brain. We have followup scans in 3 months to check again. For now he's staying on dabrafenib and tramentinib while we work out insurance for ipi/nivo as its not funded here.

Janis

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Carybaum's picture
Replies 5
Last reply 3/19/2017 - 4:19pm

Hello, fellow warriors. I am an American living in Hong Kong. I was diagnosed Stage IV in June, 2016 and have been on Nivo since July, 2016. It looks like we'll be required to move back to the US due to my job loss here. Is there anyone participating in the ACA Individual Marketplace insurance out there that is being treated with immunotherapy? What difficulties in coverage have you experienced? So far it's a bit of a nightmare trying to match network providers with plans on the Marketplace website. Telephone calls with Marketplace representatives have proven fruitless. Any info would be greatly appreciated. Keep fighting!

Regards,

Cary

 

 


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In January 2017, I had extensive surgery to remove multiple tumors from the top of my head (deepest was ulcerated and < 4mm depth).  I also had a satellite/in transit metastases (N2c) on my left scalp (max thickness of 2.14 mm) removed at the same time.  Both of the sentinel lymph nodes were negative for metastatic melanoma and MRI and PET scans were also negative. My oncologist says I am Stage III, I assume because of the satellite/in transit melanomas on my left scalp even though the lymph nodes were clean.  She wants me to get involved in a randomized trial with either Keytruda or Interferon or Ipilimumab given (patient does not choose drug): Induction 20 million units/M2 IV for 5 consecutive days per week for 4 weeks, followed by maintenance dosing 10 10 million units/M2 SubQ 3 times weekly for 48 weeks. So far I have been able to find completed trials info on Interferon alpha 2B that show no increase in survival rates in the test groups vs "watch and wait" groups and < 1 year improvement in the relapse rate.  The side effects are quite severe and the participants seem to have a lower quality of life during the 13 months of treatment. The trial is not being offered at the hospital only 1 mile from my home.  I would have to travel 20 miles in the horrible SF Bay Area traffic mess to go to the hospital conducting the trial.  Does anyone have info on completed trials involving Keytruda or Ipilimumab?  I am strongly leaning towards the "watch and wait" protocol. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/19/2017 - 1:41pm
Replies by: Anonymous, UBContributor

I will keep this short a year ago I observed a small brownish/pink mole that was a perfect circle and shiny.  Had the dermatologist remove it because it was in a spot where I kept looking at it and found myself constantly poking at it and feeling it.  When it was removed it was more pink/reddish thinking from me meddling with it.  I was told to return and they told me it was a spitz and they needed more skin since the slide showed it was extending into the lateral margin.   They cut it out and I was told margins were clear. The original shave got it all.

I was slightly concerned because my dermatologist said even if this lesion was a melanoma the treatment would be the same and nothing more could be done.  I get check ups at 6 months now.  

I asked to speak to the dermatopathologist and he was very informative.  He explained that to his eyes it appeared to be a traumatized spitz.  When I told him of my poking issue he said he was even more sure of the diagnosis. He is a very well trained dermatopathologist and is on faculty at one of the large teaching hospitals in my area. 

So my question is this ? Does it matter if this is a spitz or a melanoma?  If the treatment is the same nothing more could be done correct?  

 

 

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TexMelanomex's picture
Replies 4
Last reply 3/19/2017 - 9:36am
Replies by: Carybaum, Anonymous, Momofjake, jahendry12

Today was a good day! Not because anything changed with me, but because I let myself have a really good day! I spent time with family, took a short road trip, and for several hours I "didn't have" cancer. Don't get me wrong this wasn't denial, this was simply embracing life and living in the moment rather than the future or the past.

I'm sure many of us have these days and this isn't something novel but I think its a good reminder that we CAN have these days. In fact, I want to have many more days just like this! I want to harness this in some way and be more present and in the moment every single day. In many ways I believe this is how we beat cancer, perhaps in the most important way this is how we beat cancer. I have wrestled with the idea of physically beating cancer but what if nothing else changed? What if I became NED and I learned nothing from it? What if I went back to the usual grind of stress, living to work, and deprioritizing the most important things in life...I will have learned nothing from this. No way amigos, that isn't for me.

If this teaches me anything, it absolutely has to be that everything in my life needs to be repriotized. No more guilt for taking time for simple things, no stress about that work project that "must" get done right this second and NOT doing it right now, no hard feelings because I wanted to hang out and stare at some trees, or birds flittering around, talking to people a little longer, or just listening to the world around me. Live, live right now in this moment and be glad you did!

B

 

Tex

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AvaL's picture
Replies 3
Last reply 3/19/2017 - 3:13am
Replies by: AvaL, Anonymous

Hi, I was just interested to see if anyone knew anything about the new AJCC? Particularly in terms of stage 3. I have read that there will soon be 4 classifications to stage 3 (a,b,c and a new d). Does anyone know anymore details about this? It's an interesting change. Many thanks all. Thinking of all of you in the battle and those supporting x 

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dmalone's picture
Replies 5
Last reply 3/18/2017 - 2:23pm
Replies by: dmalone, Anonymous, jennunicorn, stevenallenschwartz

I am scheduled for surgery to further excise my newly diagnosed 1A melanoma on the back of my thigh in the morning. The surgeon was very brief and gave little information regarding my recovery other than I will have stitches for 3 weeks and shouldn't do squats. He told me I could continue running and walking.

I've done a little research and am finding rest after surgery is important and to expect pain.  Has anyone had an excision on their thigh that could share recovery expectations? Did you need more than local anesthesia for your procedure? Were you prescibed post-op antibiotics? What activity were you prescibed after surgery?

Honestly, I was planning on going in for the procedure on my own tomorrow and going back to most of my normal activities, and could use some realistic expectations. 

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MindyD's picture
Replies 26
Last reply 3/18/2017 - 2:11pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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