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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Gene_S's picture
Replies 2
Last reply 3/8/2017 - 9:15am
Replies by: raun cesar, Scooby123

Speaking of cancer, MSG makes melanoma, brain, breast, thyroid, and colon cancers practically incurable. It endows cancer with super powers.

Dr. Blaylock describes how MSG fuels cancer growth…

Cancer cells have glutamate receptors. When exposed to glutamate, tumors grow much faster and invade more aggressively. A patient’s prognosis for melanoma and squamous cell carcinoma of the throat is directly related to the number of glutamate receptors.

If you have ANY of these kinds of cancer and you eat foods with MSG, you’re pouring gasoline on the fire.

http://links.cancerdefeated.com/a/746/preview/2800121/686758187/058f6a9f...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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BrianP's picture
Replies 2
Last reply 3/1/2017 - 4:00pm
Replies by: Scooby123, jahendry12

Pretty good wrap up of the different trials from the last few years.

A couple takeaways:

If you are a complete responder to Anti-PD1 the data supports that you can stop treatment (according to author).

PDL-1 + MEK/BRAF is kicking some but in initial trial for Braf Pos folks.

Pembro + IDO inhibitor has some nice results as well as PD-1 +T-VEC

 

Lots to absorb in this article.  Going to take a couple reads to take it all in.

 

http://www.onclive.com/publications/oncology-live/2017/vol-18-no-5/combo...

 

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HI, my husband Steven has several brain mets, had WBRT in January, now on nivo/ipi and back on steroids because of edema in brain. So, since a few days, he gets a severe headache whenever he changes position from horizontal to vertical, for example getting up from bed. This is worse in the afternoon when he's had a nap. It suddenly started last Saturday, oncologist advised to go to ER, to check for possible bleeding of mets, but scan looked okay, tumors seem to be shrinking! But what could cause this weird pain, everytime he goes from lying down to sitting up? The headaches stay after he has gotten up. I make sure he drinks enough, so it is not because of dehydration. No other neurological symptoms. Anyone experienced the same? I was thinking of the dead tumor cells, could they cause issues? He has a total of 9 tumors, ranging from a few mm to 5 cm. And some more in his body. Tomorrow we will see the oncologist again to do blood tests and we will talk with her, but I am wondering if anyone of you has experience or ideas.

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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daughter1's picture
Replies 21
Last reply 3/2/2017 - 11:40am

I am in total shock and panic.  My amazing mother was diagnosed with melanoma yesterday.  She had pain in her side and we thought it was gall bladder.  They found a 4 cm lesion, the biospy originally came back benign.  We then went to Sloan to find that it is indeed melanoma.  

Monday she starts her Opdivo/Yervoy but I am so scared.  Am I reading correctly that the prognosis is still bad even with immumotherapy. 

 

She is my whole like and I can't believe this.  Any hopeful stories will be helpful.   They found nothing anywhere else.  A tiny pin in her brain that the doctor wasn't concerned with a a calcification that has been in her lung for years.  

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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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zfishberg's picture
Replies 12
Last reply 3/12/2017 - 2:12pm
Replies by: cancersnewnormal, zfishberg, Anonymous

Hello!

My husband had first Gamma Knife surgery in late October - 11 lesions were treated ( various sizes from 1 mm to 2.6 cm)

MRI has been performed in 2 month after the treatment - in late December. Results were very good - almost all lesions decreased in size and no new growth found.

The next MRI ( in February ) revealed 3 new lesions and changes in size of the previously treated lesions.

Some of the previously treated lesions increased in size by 1-3 mm.

I was told that the leasions that were previously treated can't be treated again.

Does anyone had similar results after the Gamma Knife procedures?

Does the increased in size leasions indicate that they are not "dead" and continue to grow or it could be result of the immuno- targeted therapy that he is receiving at the same time?

What is usually done for the lesions that were treated , decreased in size and then started growing again?

 

 

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mrsaxde's picture
Replies 15
Last reply 3/5/2017 - 11:42am

Hi everyone! I haven't been around this forum much the last few months, but things are going well for me at the moment and I'm generally feeling good. I've been getting Keytruda since a year ago last July and infusion number 27 (I think) is this Friday. It's working slowly for me, but it's working. Spots on my skin and in my lung have either been stable or shrinking for months....actually we saw changes for the better in the spots on my skin after the very first infusion.

Which is why I decided to drop by with this question for others receiving Keytruda. How long have you been on it? How many infusions have you had? 

I've just been curious about other responders and the length of time they have had to stay on Keytruda. At the cancer center where I'm being treated I was one of the first to start getting it, so the nurses there tell me I've been on it longer than anybody else they've seen.

-Bill

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Anonymous's picture
Replies 1
Last reply 2/28/2017 - 11:57am
Replies by: Anonymous
Anonymous's picture
Anonymous
Replies 5
Last reply 2/28/2017 - 8:04pm
Replies by: BillMFl, jennunicorn, Anonymous, mrsaxde

I'm obsessing with a mole on my lower leg that it might be a nodular melanoma. It's very dark but small. I saw it back in September and actually didn't change in size, shape or apperance since then. My question is could it be a nodular melanoma even if it's stable and didn't change in the last six months?? Is the biospy necessary?

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barb3246's picture
Replies 1
Last reply 2/28/2017 - 8:19pm
Replies by: BillMFl

My background: I have had 2 MM in-situs, 4 severes and lots of mild/moderate atypia. Last week I noticed a tiny (1mm) spot on my upper breast that I never noticed before. It just looked like a dark brown dot, but when I looked at it using a magnifying glass I saw a black line running through it and several black dots on the edges. I'm not sure why it even caught my attention and made me want to inspect it closer. It really didn't look suspicious until I looked at it thru the magnifying glass. None of my other moles look like this one when magnified.

I called the derm office yesterday, and they told me I could come right in and have it checked. Well I went in and the derm said that it did indeed have black in it when he looked thru the dermoscope and he did a punch biopsy.  Now I am freaking out thinking the worst. Does the tiny size of the spot make a difference? Is there anything else it could be or are all moles/spots with black in them melanoma?

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Does anyone have any experience with Dr.Anna Spreafico out of PMH? We are seeing her tomorrow and wondering what to expect at the first appointment.

Janis

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Aloha14's picture
Replies 2
Last reply 3/1/2017 - 2:54pm
Replies by: Aloha14, debwray

I had 2 groin lymph nodes removed in Dec 2016, which then formed 3 seromas, one very large and two small ones. The surgeon said these would drain on their own and possibly seep out of the incision~neither happened. After a month the surgeon drained the largest seroma twice and it returned just as large. Waited another few weeks and had radiology drain all three seromas and they returned but much smaller.The surgeon said to return in 6 weeks to have the seromas drained one last time.

Meanwhile, after two weeks and while I was on vacation last week I became ill with the chills, blacked out while trying to get back into bed, got injured from the fall,and went to the ER. I let the ER DR know that I noticed some sort of rash over the seromas. An ultrasound was done and determined that I had skin cellulitis but that the seroma fluid was not infected. Given IV antibiotics, pill antibiotics,  and, labs, xrays, etc., and sent back to the hotel. Within the next 2 days the skin infection took off and I had a huge infected seroma over the incision area. Flew home and to the surgeon just in time before it burst and had it excised. A channel was cut into my leg to drain the fluid, and now the wound is healing from the inside out. Packing the wound daily. Well, the seromas are gone (was checked today, no fluid in my leg), will take another week  of packing the wound before it closes up. I know this isn't how it's supposed to go. 

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BrianP's picture
Replies 1
Last reply 2/28/2017 - 10:56pm
Replies by: Bubbles

Interesting article on some research Dr. Luke is doing.  Thought Celeste, Ed and some others might find it interesting.

http://www.medpagetoday.com/reading-room/asco/melanoma/63360

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/5/2017 - 1:48pm
Replies by: dmturner, BillMFl, brendon, Jon M

Hi All;

 

I am familiar with Jenn Unicorn (thanks for your posts!) 

Anyone else out there decide to do a 'watch and wait' instead of the groin dissection? 

If so, how are you? What was your first dignosis (thickness, ulceration, etc.) and have you reoccured? If so, when/where? Age range? 

I have previously done some crowd sourcing here on this topic without much response. Hoping everyone is out living life!

 

 

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