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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Anonymous's picture
Replies 12
Last reply 11/11/2014 - 10:08am
Replies by: oldblue, Squash, Ginger8888, Annalive, Anonymous, JustMeInCA, Janner

My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.

Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.

My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.

While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.

I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.

My questions are: given the area they want to do radiation on, how tough are the side effects - 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?

I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.

Thanks for taking the time to read this.

 

 

 

 

 

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csellers23's picture
Replies 4
Last reply 11/11/2014 - 8:10am

My husband took yervoy 2 days ago and i havent been able to get him out of bed since. He had been on mek trfi combo but has been off them for 2 days. Hes hot then cold his body hurts everywhere. He said its like the flue times 10. Has anyone been through this since there first treatment. I dont know what to do.

Crystale sellers

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Ginger8888's picture
Replies 6
Last reply 11/11/2014 - 5:50am
Replies by: enatti, Ginger8888, DZnDef, Anonymous

Although this is not the pure oil that is really benefiting people, hopefully this will work, hoping one day they will approve the pure oil, the cannaboids in it's ingredients are what is "curing" some cancers..

http://illegallyhealed.com/fda-approves-cannabis/

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Replies by: Charlie S

Fly high, DT!  Sure gonna miss you, my friend!

 

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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MixtaJones's picture
Replies 5
Last reply 11/10/2014 - 2:59pm

Hey everyone,

Long time since I have been on here. As a update I finished my last Yervoy treatment on July 11th. I just had my first 3 month CT scan and the orginal tumor is no longer there and there are no signs of it spreading to other  parts of my body. YAY!

My question is for those of you that have had Yervoy treatment and it has failed. Did it fail imediatly as in the tumors never shrunk or did it work initially then tumors came back further down the road? I am obviouly glad that the scans are clear but still not completly relaxed becuase I don't know how yervoy work long term.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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arthurjedi007's picture
Replies 16
Last reply 11/10/2014 - 1:33pm
Replies by: RJoeyB, Carole K, arthurjedi007, Mat, Anonymous, odonoghue80, tschmith

Just got a call from June Kryk. She's saying I need a 4 week washout period before I first see them. Does that sound right? The paper work form said to stay on my current treatment until I get accepted into a trial. I would have thought the 4 week washout period would be after the first visit not before. Am I missing something?

Basically otherwise she explained the process like I expected. They get all the scans and stuff they need. I go for the first visit where they remove one tumor. They grow the cells and I go home. Once the cells grow which she said varies from 3 to 6 weeks. Then I go back for a second visit for 3 weeks. Week 1 is the chemo to wipe out my white blood cells. Week 2 is getting the new cells and 3 days of IL-2. The rest is recovery. The 3rd visit is 4 weeks later for scans.

Oh for those who know her June Kryk is retiring and the lady who called me yesterday Jessica Yingling is her replacement.

Artie

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GAngel's picture
Replies 12
Last reply 11/10/2014 - 11:28am

Hello all...just wanted to share our great news that Rudy continues to remain NED. He is still on the Tafinlar/mekinist combo taking it intermittently as well as taking cannibas oil daily. We are so thankful and blessed. We want to encourage all of you to keep on fighting and never lose hope. Keeping positive is so important. 

God bless you all...we are praying for you.

Gina and Rudy Rangel

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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yazziemac's picture
Replies 8
Last reply 11/10/2014 - 11:06am
Replies by: Anonymous, yazziemac, kylez, BrianP, RJoeyB, Marianne quinn, Bubbles

Hi 

I posted a few days ago with news that my husband, Pete, was just diagnosed Stage 4 because of a brain met.  The radiation oncologist told us very bluntly that he will live 18-24 months.  Now I read all sorts of posts on these boards of people with Stage 4 multiple mets who live much longer than that.  What gives!?!  Was the guy just a jackass?  Or am I deluding myself with hope that Pete could live for years yet?  I feel confused and, frankly, kind of mad.  We are waiting to meet the with oncologist (not the radiation oncologist) on Nov 18 and he'll talk to us about immunotherapy.  The radiation oncologist obviously talked with us only about radiation options. Anyways, I'm feeling angry tonight.  Angry, sad and a bit alone.  Thanks for being here for support. 

Yasmin

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/10/2014 - 6:47am
Replies by: rick1981, enatti, GAngel, Anonymous

I was really curious if anyone has tried the cannabis oil and it was reduced their cancer or know anyone who has? I've been doing a lot of researching about it but wanted to know if anyone had their own experience with it.

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Colleen66's picture
Replies 4
Last reply 11/9/2014 - 5:07pm
Replies by: Colleen66, Janner, Anonymous

Is there any difference between Nodular and Cutaneous Mel?  And would a Second Primary (other leg than original) be the same type (look the same) or be different?

Thanks guys...Colleen

Live!

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Patina's picture
Replies 4
Last reply 11/9/2014 - 3:01pm

My Mom went in earlier in the week for her CT scans and the tumors are continuing to shrink or have completely disappeared.  When all of this started she had tumors in her: lungs, kidneys, liver, adrenal gland and 18 or so tumors on her scalp and one tumor the the size of a birds egg on the back of her neck. In addition she had 25 brain mets treated spanning two separate occasions (12/9/13 8 treated, 4/15/13 17 treated). 

Her doctors and we are thrilled and its been less that 1 year since her diagnosis and the start of treatment (12/9/13). She's done fantastic with Gamma Knife followed up with starting Yervoy within the week.

During this week's visit her doctor gave us some numbers to go along with what he believe's is her outlook is. Here it is:

Based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

Considering where we were last year and the fact that her brain mets were completely missed by the original radiologist she is one very lucky woman.  

I hope one day everyone has these results. Medicine/Science has come along way and the treatments can only get better from here.

 

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Replies by: Anonymous, Bubbles, BrianP

Dunno if anyone is still interested in Antibody Drug Conjugates but they have trials for them at Sarah Cannon in Nashville. I'm still planning on TIL first but thought I should mention it.

http://sarahcannonresearch.com/for-patients/search-clinical-trials/melan...

Artie

 

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SMGY1978's picture
Replies 2
Last reply 11/8/2014 - 6:34pm
Replies by: Carole K, StephyD83

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

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JustMeInCA's picture
Replies 6
Last reply 11/8/2014 - 6:29pm
Replies by: Carole K, JustMeInCA, Anonymous

I'm hesitant to post this question because: 1) it seems so inconsequential, and 2) I feel rather idiotic, but it's a genuine issue and I'm at wit's end. My dad is Stage IV with several large tumors on his right leg that cause him a good amount of neuropathic pain, especially at night. He, who was never a cat guy, was adopted a couple years ago by an abandoned cat which simply adores him, to the point that if Dad goes outside, the cat sits at the door and yowls.

The problem is that the cat, Sidney, likes to lay on Dad in his recliner. This isn't as much of a problem during the day, but Dad has taken to sleeping in his recliner at night because the pain is more bothersome when he's lying in bed. Of course Sidney now also wants to sleep there with him and wakes him up during the night when he moves and touches Dad's leg. 

I've slept in Dad's bed the last couple nights and locked Sidney in there with me, but he yowls and bangs on the door to wake the dead. We've tried to come up with other solutions, but Dad won't go for anything like a squirt gun or sonic deterrent -- he just says, "No, leave the poor little guy alone."

Has anyone else had to deal with an overloving pet? Any suggestions would be greatly appreciated.

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Steve2142's picture
Replies 7
Last reply 11/8/2014 - 4:13pm

My BRAF results came in and I am negative so yervoy is next in line for my very very advanced melanoma.   Prior to that though, they need to radiate 5-6 brain mets via SRS.  They are suggesting that we do both at the same time to see if yervoy results are a little better.  Anyone heard of this?  Any thoughts?  Thanks

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