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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cincin1179's picture
Replies 24
Last reply 9/9/2011 - 3:47pm

Hi everyone - I was just diagnosed with Melanoma in August. It all happened pretty fast. I finally drug my butt to the dermatologist.. even though I had the mole and it didn't look right for a while. My initial appointment was August 17th, I got a call on August 23rd saying it was a 1mm melanoma.. and on August 31st (last wed), I had a big chunk of back removed and a lymph node taken out to be... tested. I seriously have been a mess. I have cried everyday and have been scaring myself looking at stuff on the net. I have my post-op appointment on Thursday and am hoping for the best but scared of the worst (especially since the surgeon freaked me out and said it was a little swollen). I will tell you one thing, it really opened my eyes to being smart in the sun. I guess I just need to talk to other people going through it at this point because as supportive as my hubby, family and friends have been... I still feel kinda alone with this one. So that's all.. nice to reach out to you all.

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/9/2011 - 12:23am

Hello All:

I am writing about my dad who was diagonosed with Melanoma a year ago.  His was very deep and it was taken out with clear margins.  It was recommended that he start on Interferon which he did with many complications and issues and stopped after 6 months.  He has been seeing Dr. Kirkwood in Pittsburgh as an add -on to his oncologist.  I have been in the medical field , one area being with Hospice so I have been extremely involved and with them through this difficult ordeal.  We were just in PIttsburgh where we were told my dad was cancer free for now and the same week received biopsy results from a local surgeon for something that just appeared on top of his head.  It is melanoma within 2 cm of the original site.  He just had the surgery and he now has a 5 inch incision on top of his head. He will return to Pittsburgh when the incision is healed, but wondering about being in a clinical study.  Interferon is not an option as he stopped it in May; Ipi has been mentioned and he is BRAF negative.  At this point in time the pet/ct is clear, but oncologists seem to believe that it is probably other places, but not shown up yet.  He had surgery 2 days ago and goes back to see the surgeon next wk.  Any ideas?  I have learned more about Melanoma than I have ever wanted to know and done so much research.  I am wondering about suggestions about any experts on scalp melanoma specifically and treatments .  They also classified my dad now as a stage 4 and I am confused by that.  At the present time with the tests we have at this time there is no cancer with the exception of the spreading from the original site on his head.  I thought stage 4 would be distant metastasis? At this time he has no lymph node or other organ involvement.  any thoughts would be so helpful! 

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Jewel's picture
Replies 3
Last reply 9/9/2011 - 12:17am
Replies by: FormerCaregiver, Jewel

Hi,

9/2/11 my husband went back in for a re-excision of his original tumor ( 3 spots showed recurrance) all in same area. They did a full ELND due to the fact that lymph node was (is) swollen. If you go back and look at my last 2 posts you will see my husbands full history which started in Nov, 2010. We have not gotten the results back yet from ELND. I apologise for not having yet filled out his profile.

Now that the melanoma has traveled from his lower left calf to his left groin does that still make him a stage 3? Pet Scan and 2 MRI's one of head and left leg only showed cancer in calf and possible in groin.

It is amazing how well he is doing concidering the drains and the 3 X 8 inch graft they took off his thigh and put on his calf.

We are still waiting for the results.  If the groin proves positive in your opinion ( and I'm open to all) what would you do?

A very concerned wife who does ALL the research. My husband refuses to live in fear.

Thank you,

Jewel

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deardad's picture
Replies 2
Last reply 9/8/2011 - 10:51pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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NYKaren's picture
Replies 22
Last reply 9/8/2011 - 10:19pm

Hi everyone.  

Got the biopsy results yesterday.  On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin.  The new area next to that section and very close to my eye is indeed melanoma.  Very disappointing to hear that it's still spreading.

I am at week 14 of ipi (had 4th and final infusion at week 10.)  So far, I'm a partial responder.  Dr. Wolchuk said that hes seen people still growing mel at week 12 with a big turn-around at week 16.  But he also says that I need to think ahead as if I will only see a partial response.  Nobody's happy.  I am absolutely not a candidate for another surgery...there's no room for margins either near my eye or my ear, which it's touching.

 Attn Jimmy: Interestingly, Dr. Halpern (in conjunction w/Wolchuk) prescribed Aldara (now available in generic).  I'm to put it on generously (use the whole packet) every night, and cover w/saran wrap for about 30 minutes.  They're hoping it will work w/the Ipi.  He also said that since it's so close to my eye, my eye-lids might blow up.  

Aldera Question:  I know the skin is supposed to react--do you stop the aldara if it blisters, etc??  I feel so vulnerable because Halpern is on vacation this week & Wolchuk is away as well. And I feel so stupid because Halpern told me that it's supposed to blister, but I didn't ask him what to do then, and now he's away! (Yes, I know that there are other docs at Sloan, and I will call them this week.)

Empire BC/BS paid for all my Ipi infusions BUT THEY WOULD ONLY PAY FOR 15 PACKETS  OF ALDERA for one month!  I'm hoping Halpern's office can fight it.

Meanwhile, we're seeing Dr. Wolchuk on Sept. 1.  If I haven't miraculously responed fully to the Ipi, we have to decide next step--a combo of 3 chemo drugs (I stupidly didn't write them down) or IL-2.  They don't give IL-2 at Sloan, but at Yale-New Haven.  Also, I'm Braf negative.

My husband heard him say that both chemo and IL-2 have a low response rate--does 20% sound right??  I'm sure I heard that if one responds to IL-2 it's a lasting response.  He said that the chemo doesn't have many side-effects, and I already know how brutal the IL-2 can be.  My 21-year old son says "go for the most aggressive treatment."

I guess it's wait and see with the ipi/aldara and more decisions on the 1st.

All advice, suggestions welcome!

thanks,

karen

 

Don't Stop Believing

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jax2007gxp's picture
Replies 6
Last reply 9/8/2011 - 6:55pm
Replies by: jax2007gxp, Anonymous, lhaley, Lauri England, Donna M.

Hi all,

I received the results of my PET/CT and brain MRIs from yesterday....other than something minor going on in my thyroid (small potatoes compared to mel), there were no signs of any metastases.  I never thought I would be so relieved to have surgery confirmed!

The lymph node which signaled me to see the doctor swelled up pretty much overnight.  It was about 5 cm when an ultrasound was performed.  Because it was so large and had grown so quickly, I was concerned that may have been a bad sign.  I am so very thankful to have good results and hope others facing the early stages of this war will remember that sometimes it doesn't end up being the worst case scenario.

The next battle is to be fought on Friday when the doc removes the lymph nodes from my right groin.

Wishing all of us long futures of clear scans!!!

Jacki

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RMcLegal's picture
Replies 13
Last reply 9/8/2011 - 6:47pm
Replies by: MikeWI, RMcLegal, Cynthia C

A member of this discussion board community inspired me to write some new lyrics and post a YouTube video link for the Bee Gees' "Stayin' Alive".  Put on your disco shoes and come dance with us at www.hotelmelanoma.blogspot.com.  Best wishes to all.

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mommydog's picture
Replies 1
Last reply 9/8/2011 - 12:21am
Replies by: Charlie S

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insite or advice.

Deborah

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PlantLady's picture
Replies 1
Last reply 9/7/2011 - 11:34pm
Replies by: jax2007gxp

Here is an interesting article http://mcancertalk.org/1119/patients-underlying-health-linked-to-worse-outcomes-for-melanoma-2/#more-1119
 

 Headline:
Frailty May Threaten Melanoma Survival More Than Age
Findings could influence individual skin cancer treatment, researchers say
 
First 2 paragraphs, for full article click on link at top of this post.

So, folks, pick up those dumbbells.

 

"It’s not how old but how frail patients are that can predict how well they will fare after a melanoma diagnosis. In fact, young patients in poor health may have worse outcomes than older patients in good shape.

A new study from the University of Michigan Comprehensive Cancer Center finds that patients with decreased core muscle density were more likely to see their cancer spread to distant parts of the body."

CJ  - wife of Ron, Stage IV, mets in lung, bone, adrenal. Unknown primary.

 

If you're going through hell, keep going. ~ Winston Churchill

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Replies by: King, nickmac56, TracyLee

I wrote here last week and just thought I'd give everyone a quick update. My extreme headaches from last week have subsided, not entirely, but I feel much better. The weekend was not a fun one, lots of nerves and anxiety waiting on results.

But, good news...

MRI came back clean! Huge relief. Then I had my blood work done and it came back with very low sodium levels (126 vs. 135 normal). Instead of getting my 4th and hopefully final dose of Ipi, they sent me to urgent care. WTF? Ended up spending about 4 hours there, they treated it with 2 saline bags and brought it back up to close to normal, and let me go by 11 last night. Hoping to get back up there today for my final treatment. 

Quick questions for the board:

1. Has anyone experienced low sodium levels before? The nurse said it was not a common effect of Ipi, and the docs at urgent care were clueless as to what it could have been caused by. They did say that if it gets very low, it can be very dangerous. 

2. What are the common treatment options if thyroid levels are low. Is this permanent impairment? 

3. Still have not received much info into what may have been causing my headaches. A swollen Pituitary seems like the answer I get most, but again, my blood work for the pituitary (namely cortisol levels) were normal. 

Docs did say I may get an MRI scheduled for my pituatary area, which was not caught on my previous MRI last week, but said they were not as concerned in that area as there was nothing in my blood work to suggest anything is wrong with it. 

Anyway, hoping to be done with Ipi for good today and then can enjoy a 12 day break back in Colorado. 

Wetterhorn 

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JerryfromFauq's picture
Replies 5
Last reply 9/7/2011 - 8:31pm

http://www.mayoclinicproceedings.com/content/83/7/825.full

A long and very interesting on the state of melanoma investigations.

I'm me, not a statistic. Praying to not be one for years yet.

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Napa K's picture
Replies 3
Last reply 9/7/2011 - 5:38pm
Replies by: NYKaren, TracyLee, swissie

Has anyone experience stomach pain with Ipi with out diarrhea/intestinal issues? Not lower GI but more stomach/just below rib cage tenderness, pain and nausea. 

2 weeks out from 4th dose and had little to no side effects but have started feeling not so hot over the last week.  Especially bad after eating.  Wanting to know if anyone has had similar experience.

Hope is the most powerful drug

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dian in spokane's picture
Replies 2
Last reply 9/7/2011 - 2:46pm

This morning my local paper highlighted this organization and it's founder. I found it pretty interesting and went out on the web to find this website to share with you all. I know how difficult it can be to find yourself suddenly tossed into the machinery of the American Medical system. I hope this is useful to some of you.

 

dian

 

http://www.patientnavigator.com/content/

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jmmm's picture
Replies 6
Last reply 9/7/2011 - 8:06am

I have a question about trials--what are the big hospitals treating metastatc melanoma and what are the "big" trials that are going on right now.  My husband has disease progression after yervoy working for a couple of weeks.  His oncologist is sending him to Dr. Linnette at Siteman Cancer Center (st. louis--about 45 minutes from where we live).  He's the closest specialist running trials right now.  We're open to looking farther away, but are only willing to travel if there is really something promising going on--we have 3 young boys and since it seems at this point, my husband has a limited time left to spend with them, he doesn't want to spend it running all over the country--he wants to spend as much time as he can with our boys.  We know there's Zelboraf--we're hoping to wait on that for awhile, since it only lasts for a limited amount of time and neither tumor he has now is in a place it will be fatal. 

We've looked a bit into IL-2 and it sounds kind of promising.  Will any oncologist do IL-2, or do you have to go to a specific center to get it??  Since we're in the process of switching doctors, we're not sure where to turn at this point.

Please help us out--my husband is only 38 and in good health (minus cancer:)).

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Phil S's picture
Replies 6
Last reply 9/6/2011 - 3:56pm

Robert posted back the first week of June that he was going to do the biochemo treatment in California. I was following his posts during his decision making, and have been hoping he had good response. If you get a chance let us know how you are doing? Valerie (Phil's wife)

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