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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NYKaren's picture
Replies 5
Last reply 5/31/2012 - 8:02pm

 

Hi everyone. Another reinduction ends after 3 infusions.  After 6 weeks since my 3rd (and final) Yervoy infusion, I am done.   I’ve been to Sloan’s Urgent Care 3 times, the last one being this past Friday night, presenting with diarrhea (every day for 6 weeks) and fever.  Even being on 70 mg. of prednisone didn’t take relieve the diarrhea completely.

I finally weaned off the Prednisone this past Monday, and we attributed my extreme weakness to the wean when I showed up for my 4th ipi infusion on Thursday, and Dr. Wolchok told me that I was effectively done with ipi.  (Oh yes, I lost 20 lbs. too.)  I felt so physically awful that I should have turned right around and checked into the hospital.  I had no fever then, and we didn't know my white count was high.  I think some small part of me was still stinging from not being able to complete the ipi, fool that I was.    So on Friday when I awoke w/102, they were already calling with the high-white-cell count and telling me to get back to the hospital.  They took yet another C/T scan, this time it showed significant colitis.  The first visit was about 4 weeks ago with same presentation, but the C/T didn’t show colitis, so the doc was treating it like mild colitis…with an infusion of steroids, continuing on the steroids at home.  The second visit was 2 weeks ago, CT was “closed” in the middle of the night—who know CT’s closed in major metropolitan hospitals??—they took an x-ray, said it looked fine, and sent me home.  The first two times I took Tylenol in the morning when I awoke w/fever, but it didn’t return in the Urgent Care.  THIS time, it returned that evening, but I know the Remicade had been on order anyway.  They also have me a bag- full of Cipro.  And that private room I was so happy about in Urgent Care, it was the Isolation Room because I was presenting with fever and a high white count.  I thought that was actually pretty funny.  And oh yes, I started feeling better on Saturday from the Remicade.  Don’t know if I’ll need another infusion or not.

Although there is a big improvement on my face, some of the  mets on are partially returning even after Dr. Haplern freezes them and I apply Aldera, and the “control” mel that he’s not freezing (for PD1 eligibility purposes) remains the same size, so the big question is, WHAT’S NEXT??  I guess my next PET, whenever that might be, will tell more.

Hope everyone had a better weekend than I did!

karen

Don't Stop Believing

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rjcravens's picture
Replies 6
Last reply 5/31/2012 - 11:15am
Replies by: Snickers60, washoegal, Anonymous, lhaley, yoopergirl

I had my Pet Scan and MRI done for my one year follow up after finishing the Interferon. This is the first scan I have had since my inital diagnosis. My anxiety is thru the roof. I feel like I could throw up at any min. I keep having bad dreams and thinking the worst. I have an appt tomorrow at 3pm. to be "restaged". How do you get through the waiting period. What if its there and they dont see it? What if its everywhere? I can't breathe.

 Also, when doing my skin check the other day, I noticed a purple blue area raised around my rectum. I haven't had any change in bowel pattern and no problems with bowel movements. Should i be concerned or is this just something that comes along with age. I am a nurse and I have seen many hemmrroids, but never any so purplish as this.

Say a prayer....

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Gene_S's picture
Replies 1
Last reply 5/28/2012 - 10:18pm
Replies by: kristine
 
However there is no mention of ippi in this article?
 
Best wishes,
Gene

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

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mtay26's picture
Replies 2
Last reply 5/30/2012 - 6:15am

Hi. I was just recently diagnosed with Malignant Melanoma the Superficial Spreading Type.
I am 32 and female with 3 boys. My oldest son was placed my me in a Christian Boy's Home on January 25th of this year. Since then I have been depressed, with no appetite, weight loss, sore shoulder joints, stiff neck and shoulders and constant fatigue. I have had a swollen place on my lower right arm that comes and goes for the last month. It is tender and warm to the touch. I didn't think too much of it and didn't mention it when I saw the dermatologist to have a mole removed. While waiting for the pathology report, my lymph node under left jaw began to swell and was very sore. Actually the entire left side of my neck was sore. I truelly believed that everything was because I was so stressed about the situation with my son. Could any of this be related to the cancer? Should I try to be seen sooner than my scheduled appointment on June 6th for SNB and WLE consultation with the surgical oncologist? Or wait it out? I just don't know what to do or what to think anymore? I had a dream last night that it had spread to my liver. Really? And also I don't understand what mitotic rate and host inflammatory rates mean.
Below is my entire pathology report from a shave biopsy. The original area before shave biopsy was 0.5cm x 0.9 cm.

1.Skin Shave Biopsy, Right Paraspinal Back: Malignant Melanoma, Breslow Thickness 0.83mm, Clark Level III

Comment: 1. There is an asymmetric compound melanocytic proliferation. On one side of the lesion there are architectural features of a dysplastic nevus. On the other side, melanocytes are markedly atypical, with enlarged irregular and confluent nests and some pagetoid spread. Similar confluent nests in the dermis extend to a depth of 0.83 mm.

Type: superficial spreading in vertical growth phase
Clark Level: III
Breslow Depth: 0.83 mm
Host Inflammatory Response: moderate, focally infiltrative
Miosis: 1per sq mm
Regression: not identified
Ulceration: not identified
Satellitosis: not identified
Vascular/lymphatic Invasion: not identified
Predominent Cell Type: spindled and epithelioid
Precursor Lesion: dysplastic nevus
Margin: The lesion extends close to a lateral edge.
Stage: pT1b NX

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Bruce Davis's picture
Replies 5
Last reply 5/30/2012 - 9:12pm

Just wanted to thank all the people who went through clinical trials for zelboraf. I 've been on zel. For 8 months now. As I was driving to work the other day I started to feel sorry for myself passing by runners that were doing the same thing I'm not able to do any more due to pain in the feet (side effect from zel. and messed up feet). Then I passed by a guy in a wheelchair waiting for a bus. Seeing him, zapped me out of my "funk". I was reminded of the blessings I still have, and overall dong pretty good.

Presently it's "Don't give up."

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yoopergirl's picture
Replies 7
Last reply 5/28/2012 - 12:00pm

I am due to see my oncoligist on June 4th after my cat scan to see if I am having a response to the Yervoy or not, then will discuss treatment. I went the other day to have my hair done and eye brows and my beautician said some of the hair on my brows are white, I said are you sure they are not grey and she said they are white!! I can't see that since I wear glasses and the brows are kinda hidden, I thought I saw on this board that it would be a good sign  that  the ipi was working although my tumors are still big so I guess I won't really know until we discuss my scan. Has anyone had this happen to them? Thanks.

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ElaineLinn's picture
Replies 11
Last reply 5/30/2012 - 11:14am

I have not been on line for quit a while because of spending more time in the hospital. As you know I have been batting Melanoma for quit a while now. It has progress to the brain and dr. are afraid that it has move to the spinal fluid. If it is in the spin there is no cure and the only way to tell is if I let them do a spinal tap. I refused the spinal tap because the dr. are 99.9 percent sure that it has so that pretty well tells me that it is and I dont want poked and probed any more. I want to enjoy what time I have left with my family and friends , so while I am still able that is what I am goin to do. But I will not give up the battle I am just resting for a while. The dr. told me this week that if it is the cancer in my spin I will know soon and will have around 3 to 12 months . So I am dong chemo and radiation this week to try and kill the 3 new tumors that I have and will have new scans  in a f ew months. But I feel better now then I have in a long time. I am still able to do things and able to get around.  I love and enjoy life but from here on out I am going to enjoy it along with my faimly. I want to say I wish you all the best in your fight and please dont ever give up the fight , maybe on day soon they will find a cure and then ther will be no more pain and suffering from this diese. God bless you and and remember he love us all

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mrs_grover's picture
Replies 4
Last reply 3/15/2016 - 12:15am

My husband recently passed away from Melanoma.  Although the Zelboraf did not work for him, he wanted to make sure the remainder of his prescription would go to good use, especially given the cost.  Does anyone know of an organization that would accept the donation, and not resell it or charge someone for it?  Thank you.

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Ashykay's picture
Replies 8
Last reply 6/1/2012 - 3:48pm

Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response - e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.

Mum got to enjoy a fantastic holiday with my Dad in late March/early April. Upon her return, she was not feeling right, and it was discovered that after almost 11 months of jher sacrum tumour just growing where it was and not "spreading", it had spread to her stomach, kidney and liver as well as her upper body. After the controversy of Yervoy (ipi) being rejected on the Australian Pharmaceutical Benefits Scheme around the same time, I proactively campaigned against this decision so that people like my Mum would have subsidised access to Yervoy again even after their tumours had spread elsewhere. This would have been a different start for Mum, as they finally could safely access some of her tumours to do a vaccine + Yervoy (when before they could only do a vaccine with other people's tumours + Yervoy due to the location of her initial tumour). Unfortunately we did not get time to take this further nor even to try raise the $120,000 it would've cost to go on Yervoy again.

Sadly, Mum quickly deteriorated within the month, and on 16 May 2012, she passed away at home with all of her family by her side (as she wished). She is deeply missed and we are all lost without her. Not sure how we will go on in future, but my campaigning of the PBS decision and other melanoma treatments I hope will bring some meaning to my purpose in life, as well as the love between my family, who I believe are far closer due to Mum. A researcher is doing research into Mum's melanoma (melanoma with an unknown primary), who connected with Mum's story, and is doing fundraising for his research in her honour, which is truly inspiring. I know Mum is proud of everything we have done, and she will never, ever be forgotten. We love her SO very much & she was just such an amazing, inspiring and beautiful person.

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Ali's picture
Replies 15
Last reply 6/27/2012 - 3:43pm

Just wanted to update everyone.  I am waiting to be discharged after my 6th and final week of IL-2.  My fist scans looked really good, shrinkage and stable disease.  The second scans showed new subcutaneous mets (I already knew that because I could feel them) but the tumor in the liver and bones looked stable still.  So we went ahead with the last cycle.  I got 9 bags in the fist week and 8 for the second.  I can still feel 2 subqs which have shrunk this week.  The Dr. guesses will have to go with a plan b, that I most likely will not be a complete responder (next scans in July).  But today I am grateful that the IL-2 has helped (I have felt 6 tumors disappear over the last 4 month), and I hope it will keep helping, and maybe enhance the effects of a next treatment.

This week we have found what may be vitiligo on my belly, and the Dr. said some moles on my back look like they have a halo of white around them.  Those are good signs that my body is specifically attacking my melanocytes. 

I feel so blessed, we were so well taken care of in and out of the hospital. 

If anyone has questions about the IL2 experience you can message me and I will be happy to answer any questions. 

I pray for all fellow warriors that we can beat this thing!!!!  God bless.

Ali

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Bob B.'s picture
Replies 5
Last reply 6/6/2012 - 4:20am
Replies by: Bob B., Janner, Anonymous

I hope to learn from the far greater experience of you all.   Just as much, I hope the topic is useful for others.   

Two years ago an oncologist in Brazil offered me a SLNB for a #1, primary (Lentigo Maligna Melanoma/WMM).  Two pathology reports showed a borderline Breslow thickness of .67 and .80.   However, the SLNB offer followed a WLE (without biopsy).  Lymphatic drainage would surely have compromised results of a SLNB, as I've lately learned.  (??)   In any case, other pronostic factors were good.

I declined the SLNB.   No local recurrence for 28 months.   Maybe I was lucky.

Next, I had #2 (Superficially Spreading Melanoma/SSM) excised two months ago- without a biopsy again, despite almost uniform use by dermatologists.   But in view of the excellent pathologist's doubts about "narrow margins", I had another excision/WLE performed.   The pathologist, with whom I had two fascinating conversations, turned out to have been right.  With the second excision, healthy margins had been obtained.  

Two weeks ago #3 primary got the shave biopsy I again wished to avoid.   For two weeks pathology remained in doubt, so the tissue was sent for a second opinion:   Result:   Another, superficially small SSM.   I guess accurate prognosis (Breslow, mitotic rate, Clark, etc) with a shave biopsy is impossible.   But surprisingly, the pathologist's final report failed even to indicate shave depth.  (??)   Orally only, I learned the lesion had been "transected at .94".  

A SLNB was duly suggested as the shave's actual depth below is unknown.   My question is, once again:   Do it or not?

Despite the probability of even greater depth than ".94", I am reluctant.   Reasons:   Doubts about the two weeks of pathology dithering;  shave depth initially went unindicated by the pathologist who, unlike the previous pathologist, seems indisposed to discuss her report;  SLNB positive rate 5-10%;  SLNB non-therapeutic, used strictly for staging;  my uninformed concerns about shave biopsies; survival rates no better with than without;  widespread doubt about overuse.   But perhaps just as important, my usual "less is more.... best surgery is no surgery" prejudice. 

I would really appreciate the kind advice of the experienced members who were so much help with #2.   What do you think?  

Thanks!

 

 

The Only Good Legend is a Dead Legend.

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Sherron's picture
Replies 3
Last reply 5/25/2012 - 8:11pm
Replies by: WendyPam

Has anyone heard how his surgery went this morning? 

Take Care,

Sherron,wife to Jim FOREVER

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Hello everyone,

A major TV news network is doing a story on how the Supreme Court’s decision on health reform will impact with people with serious illnesses.  One provision within health reform is temporary insurance coverage for people with “pre-existing coverage” who have already been denied insurance coverage.  The program is called Pre-Existing Condition Insurance Plan (PCIP). If you have melanoma and obtained insurance coverage thru this program, please contact Lauren Smith who is supporting our communications efforts atLauren@jpa.com.  Please respond by Wednesday evening.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma!

 

Shelby - MRF

 

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TSchulz's picture
Replies 14
Last reply 5/31/2012 - 11:15pm

Hello all,

I am currently at NIH preparing to receive my billions of TIL cells in just a few hours. While I have a tremendous network of support close to me, I could use all the positive waves to help my cells do their job! I figured who better than fellow warriors to help tip the scales?

So if you have a little extra energy on the plus side today, please send a shout out this direction.

I have such admiration for everything the people on this site go through, have gone through and contribute. May all of our "data" add up to cure soon.

Best, Troy

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deardad's picture
Replies 4
Last reply 5/25/2012 - 7:44pm
Replies by: deardad, Woodlands, Phil S, benp

So Dad had his first round of WBR today.....seemed fairly straight forward but now 4hrs later he is extremely tired and asleep in bed. He said he had slight blurred vision and a headache?

I know these are all possible symptoms, but so soon?

WBR warriors please come forward with some experiences.

Thanks in advance 

Nahmi from Melbourne

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