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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_Paul_'s picture
Replies 8
Last reply 3/4/2015 - 11:43pm

So I just got a call from Dr. Lee here in Seattle who is the principal investigator for the TIL clinical trial at the SCCA. She informed me that not only were they able to successfully harvest my TIL cells (they have been incubating in a dark lab somewhere for the last 5 weeks in what I like to refer as "melanoma stew"), but that they show very good tumor infiltration. They are now frozen and available for when I need them.

I had my second infusion of Keytruda last week and it’s too early to know if it’s working, but if it’s not, or stops working sometime in the future, I have a new Plan B waiting!

- Paul.

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porrige's picture
Replies 4
Last reply 3/4/2015 - 11:53am

Hello Guys,

My sister is just after finishing her two weeks of whole brain radiation and recovering at home, I am so worried about her as her husband has told me that she is completely exhausted has terrible headaches and no mind to talk to anyone and she is  so fatigued. The poor man is so worried about her, and we her family are so helpless to do anything as she lives in Australia and we live in Europe. Its heart breaking for us as we are so powerless to help them right now, and all we can do is send messages, hope and pray. If anyone here has had radiation for Mets to the Brain, can you tell me if these symptoms are from the radiation and if they are will she be like this for long, she is hoping to start a new drug treatment as soon as she settles. She has been through so much recently, with the seizures and exhaustion and missing everyone, I would love to be able to just find out some more so that I can share with her amazing husband who is solely nursing her at the moment.Thanking you all.

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dmk252003's picture
Replies 2
Last reply 3/4/2015 - 2:03pm

Has anyone had IV Hydration while doing yervoy treatment?

I just received an email from my moms oncologist stating that she ordered hydration IV with her yervoy treatment due to abnormal creatinine test result.

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Savvymama's picture
Replies 3
Last reply 3/3/2015 - 3:37am

My mom is 58 years old and presented with stage 4 melanoma in her lymph nodes (neck and groin) in October 2014. She was taken off of Yervoy after only one dose because it dropped her platelet count to 0 and her hemoglobin to 5.5. She had active bleeding. She was hospitalized for 10 days while doctors tried to get her blood counts higher. She then started on Keytruda and was going to have her fourth infusion today but her PET scan showed no tumor response to Keytruda. Tumors are pressing on veins in her legs causing major swelling to her lower extremities. Her doctor will be starting her on a chemotherapy regimen for Taxol and Carboplatin. Does this seem like the next logical step? She is BRAF +. I'm a pediatric oncology nurse so I'm very familiar with chemotherapy but there is a lot I still have to learn about Melanoma. Any advice?  Thanks.

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Before my most recent radiation and now again whenever I try to sleep in my recliner I can no longer recline it all the way because fluid collects in my throat and I wake up choking. The most I can go seems about 45 degrees.

The fluid i spit up seems to be anywhere from clear watery to very white with various shades in between.

i would normally just deal with such a minor thing but I have another head mri Monday the 9th. Although I requested the open mri this time and it is very difficult with all my spine issues I have no idea how I can do it with this choking issue.

i know how important the head mri is so I'm very worried I can't do it with this choking stuff. I did find there are reclining mri but they seem to be for the arms and legs. I've seen a picture of a very large open mri but it just showed a guy lying flat.

I've thought of asking for some med to practically knock me out but then I think what if the fluid builds in my throat and I can't press the ball.

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Anonymous's picture
Replies 8
Last reply 3/4/2015 - 8:31am
Replies by: Anonymous, Janner, JerryfromFauq, pd1gal

I had two moles biopsied on 2/18. The one on my back apparently came back fine. The one on my head, they chose to to an excision within the week. I had that done on 2/28 (biopsy results came back on 2/23). I feel as though they aren't telling me much. And of course I don't understand the dermopathologists terminology. Can someone help me interpret the results? The surgeon who removed the rest of it told me to hug my hairdressers neck because she could have saved my life. And he told me it was pretty gnarly but that's about it and I'm making myself crazy waiting for the new pathology reports to come back. If it is melanoma I can handle it. It's the unknown I can't handle. That is part of my OCD. The lack of control. Thanks in advance. How can I post the report? I'm mobile.

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magnus31's picture
Replies 10
Last reply 3/3/2015 - 8:58am

Dear all,

I haven't been very active in this forum but I do find a lot of support and inspiration in reading through threads in here. So thanks all and stay positive!

After my initial IIIA diagnosis late 2012, I haven't really been blessed with good news. Lung mets were identified during summer of 2014 and I turned stage IV. After a non-responsive round of Yervoy with only mild side-effects, two brain mets were identified in December 2014. At that point I was put on Nivolumab/PD1 treatment as well as scheduled for gammaknife treatment in January 2014.

The thought of my head being fixed and inserted into a machine scared me immensely. At times, even more than the brainmets! But the gammaknife treatment went much smoother than I had feared. The sound of the radio and the fact that I could communicate with nurses through a microphone calmed me down. The scheduled 43 minutes passed by really quickly.  Three days after I worked out again at the gym as usual and recommenced my weekly runs.

Now. I had my first Nivolumab/PD1 evaluation last week. And finally some good news! All mets in lungs and brains had shrunk. Some even dramatically! For the first time since my diagnosis, I felt I finally had found some breathing space. Next evaluation is scheduled for April and I can only hope that the mets will have regressed even further by then.

Since this good news, I have finally dared to look forward again. Planned a move, started pondering a future career move, investing in a house...

But after few minutes of planning ahead, I find myself stopping and asking myself critical questions. Can I medically founded believe that PD1 will work for me in the longer term, just on the basis of a positive first evaluation? Is it reasonable to believe that this drug will keep me alive and kicking for years to come? Is me planning a long time ahead just fooling myself? Will I still be alive in six months? Dare I hope for six more years?

I am enduring no side effects at all from Nivolumab/PD1. Thoughts and stories on the PD1 treatment are welcome. Long-term survivor stories would especially have made my day!








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Cyto's picture
Replies 3
Last reply 3/2/2015 - 9:57am
Replies by: SABKLYN, Anonymous, Cyto



My mother (43 years old) was diagnosticed with a melanoma 1 month ago. Before the operation who will occur next week, he had to pass a echography and a scanner, all is ok (it is a good new ? as it is not always efficiency as i know, and here's the resultat, I'm asking a lot of questions, hope you can explain me :


Type of Melanoma : SSM

Deepth of Breslow : 4mm

Clark : Level 3

Ulcerated : Yes

Satelitte by transit : No

Mitotic rate : 2/ mm²

Regression : No

TIL : No


I'm paniqued for her, her melanoma is very depth (4mm), but the clark Level is only 3, this level it is a good prognosis factor ? I saw the mitotic rate is fairly low, it is good too ?

Also, clinical doctor has founded a lymph node at the neck, meaning it would be 100% positive ?


And also, its lesion is located on her external ear, which is not irrigated by the flood, so it is risked or considered as a extremity ?



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tjc0912's picture
Replies 8
Last reply 3/3/2015 - 10:19pm

Hi all

I have not been on this site in a very long time but am now wondering if anyone has any advice.  My dad is 66 and has stage IV melanoma that he has been fighting for 2 1/2 years.  He has tried yervoy, IL2, anti-pd1, a merk trial, radiation and now is starting taxol/carboplatin...throughout all these treatments he has been very itchy (I'm sure part of the disease process as well) but im wondering if anyone else has dealt with this? If so is there any remedy that anyone can recommend? It is getting so bad he can barely stand it?

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Replies by: Anonymous

Looking for a recommendation for an excellent dermatologist in the Minneapolis area.  Thanks

"Lord, Together We Can Handle Anything"

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tomw65's picture
Replies 9
Last reply 3/2/2015 - 11:39am

I was diagnosed with stage 3 melanoma in Jan of 2015. I am a 70 year old married man with 3 children and just received my 1st of 4 immuno therapy infusions with 3 weeks in between treatments.looking to find support any where that I can through this journey. New to this site so just trying to find my way around.


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Anonymous's picture
Replies 8
Last reply 3/1/2015 - 9:47am
Replies by: SABKLYN, arthurjedi007, Anonymous, KMick, yazziemac

My partner went to his family doctor with a highly suspicious lesion on the bridge of his nose.  He never had a lesion there before. It grew quickly over 4-6 weeks before he saw the doctor.  It was ulcerated and bleeding, and black and blue in colour.  The doctor referred him for a biopsy.  The referral was dated for 3 1/2 months later.  We asked for a sooner appointment and couldn't get one.  The biopsy came back as positive for melanoma and a month later the neck lymph nodes came back positive.  

My question is-how long do most people wait to have an initial biopsy?  

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sstech's picture
Replies 4
Last reply 3/9/2015 - 7:27am
Replies by: sstech, Mat, Bubbles

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

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I was hoping to connect with any patients of Dr. Hogg who have Stage 4 melanoma.  My husband, Pete, is a patient of his.



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Kdw2012's picture
Replies 6
Last reply 2/28/2015 - 9:16pm

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

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