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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shellebrownies's picture
Replies 6
Last reply 5/16/2011 - 5:18pm

Anyone on this trial? Just wondering about response rates and levels of side effects...

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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kim2712's picture
Replies 3
Last reply 5/16/2011 - 4:48pm

My son is very, very ill as you know from my post titled "my son's journey thus far". He continues to decline. His lungs are full of fluid and tumors, as well as many other area's of his body. He also has horrible lymphatic swelling from the diaphragm down to his feet. The doctor will not give him anymore chemo as it did nothing for him. He did agree to give him a dose of ipi a week ago yesterday. He has gained over 60 pounds of fluid weight in the last few weeks. He and his wife want to try Gersen therapy but can't find anyone here to administer it. I don't know that he has enough time for that to work anyways. Is there anything else out there that may help him?

Thank you,

Kim

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shellebrownies's picture
Replies 5
Last reply 5/16/2011 - 4:46pm
Replies by: chenrydh, Anonymous, RMcLegal, Carol Taylor, Terra

My husband will be starting a trial tomorrow and he will either be taking just ipi or ipi and GM-CSF. Can someone let me know what kind of side effects are common to experience? 

Also, I've been told it can take some time to work...I also read about the tumor sites becoming painful and warm. Does that happen regardless? Or does that only happen in the patients that the medicine is helping?

Sorry to be bombarding the board as of late, but I'd like to have as much information as possible going into the appointment tomorrow. Thank you!

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Here is a link for a newspaper article written about my son on Friday, May 13th. It will only be on the site until Monday afternoon, May 16th, so check it out soon if you want to read it.

 

http://www.timesrecord.com/

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Rendergirl's picture
Replies 28
Last reply 5/16/2011 - 2:26pm

Hi I'm Becca, stage III. I don't know if I'm 3a, b or c... can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.

My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?

Thanks for any feedback...

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Terra's picture
Replies 2
Last reply 5/16/2011 - 12:28pm
Replies by: Terra, emilypen

 

He does have mets in his liver, bone (ribs), one in kidney, and muscle, and I a few other places.  He has ct and mri coming up and was just taken off of P13K and Mek trial because of cv levels in blood (muscle breakdown). He needs a 28 day wash out period for ipi, it has been 10 days already, so nervous about waiting the next 18 days and waht can happen.  Next plan is TIL in Washington at NCI. Mentally and emotionally it is taking its toll. 

 

I know I don't want to hear these answers but Derek has some unexplained swelling in his wirst and forearm.  He has nerve issues in this arm and it is also where he has had numerous surgeries.   He also has been incredibly itchy all over - anybody have this coming off a treatment?

 

Thank-you so much,

Terra

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rainsberger.tony's picture
Replies 6
Last reply 5/16/2011 - 10:40am

Hi All,

Just wanted to share a little joy/hope:

 

This brief history of my wife's journey with melanoma. 

6/06:  Initial diagnosis, stage IIIC with lymph involvement in her left armpit. Partial basin resection, several large moles removed (primary never identified), clean PET scan

7/06-8/07:  Treatment: adjuvuct therapy with leukine 

8/07:  Disease progression, stage IV

8/07-11/07:  Treatment: IL-2 with partial response but significant growth as well

12/07 – 7/08:  Treatment: Off trial chemo cocktail – avastin, taxol, carboplatin

8/08-9/10:  Treatment: Clinical trial compassionate use Ipi(now called Yervoy) along with several surgeries to remove localized growth that didn’t kick her off the trial

9/10:  Treatment:  Dacarbazine, cisplatin, vinblastine

12/10-Present:  NED

I feel it is important to note that my wife is a firm believer in the power of intention and the importance of visualizing the outcome you wish to create.  While we have had our share of tears and fears, she works at creating a positive attitude; it pervades her daily life.  She spends hours visualizing/feeling: “what it is like to live in a healthy, cancer-free body”, makes gratitude lists, listens to positive affirmations, and works with a counselors and support groups.  Given any opportunity she will celebrating the little victories and does a great job of looking beyond the set backs to the next victory, always hopeful of the next treatment.  She decided long ago that a scan simply indicated when a treatment change was necessary and told her oncologist to skip the minutia of numbers associated with every little lesion. 

There is no research suggesting that this particular treatment path would help a patient reach NED.  Maybe it is her particular disease, maybe her treatment sequence, maybe her ever-present faith in good, maybe a combination.  Personally, I believe that miracles happen every day, faith and hope are important, and while medicine/science are wonderful tools, they certainly don’t have all of the answers.

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Rocco's picture
Replies 1
Last reply 5/16/2011 - 8:19am
Replies by: Laurie from maine

JUST FYI in case you're interested in attending...SPRING SYMPOSIUM 2011

Integrative Therapies and Cancer Care: 

Learning About the Potential Impact On Your Wellness and Wellbeing

An opportunity for education, discussion & connection for patients,
survivors, families & friends

Tuesday, May 17, 6:30 – 9:00 pm

Dana Farber Cancer Institute
Jimmy Fund Auditorium
35 Binney Street, Boston, MA

Speakers:

David S. Rosenthal, MD, Medical Director, Leonard P. Zakim Center for
Integrative Therapies, Dana-Farber Cancer Institute
Stacy Kennedy, MPH, RD, CSO, LDN, Senior Clinical Nutritionist,
Dana Farber Cancer Institute
Deborah Steele, MA, ATR, Manager of Support Services Programming, Norris Cotton
Cancer Center, Dartmouth Hitchcock Medical Center
Amy Grose, MSW, LICSW, Clinical Oncology Social Worker, Department of Psychosocial
Oncology and Palliative Care, Dana-Farber Cancer Institute

RSVP:
Melanoma Foundation of New England at (978) 371-5613 or tsignet@mfne.org

Services:
Free Admission, Refreshments, Free Parking (in the Smith Building at 1 Jimmy Fund Way)  

Luke 1:37

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carol b's picture
Replies 11
Last reply 5/16/2011 - 3:24am

Had my pet scan last wed. I got my results this week... Four of my tumors are completely gone. No sign that they were ever there.. Prayers are working, Thanks for all of them.. The black monster under my arm grew about 3 more cm. But thats ok.. I got back to Vandy next week on the 18th to do another round of IL2. Pray that i can take at least 10 to 12 bags. It did shrink it over half its size last time but me and the doc got way to confident and set the IL2 appt to far apart and it allowed mel to grow back and increase in size. I will get 7 days to recoup after the first round and go back on June 1 to do another round. The treatments are horrible, those of you that have taken it know. I need as much of this med in my body as i can handle and i know i cant do it without prayers. But when it shrinks it this time my surgeon is gonna take it out and hit me with another round of IL2 and make me NED.. I will become one of the miracles.. In Dec i was told i had 9 months to live, 5 of those r gone now and i know im gonna beat the death sentence i was given, well mel ain't gonna get me anyway,, something else could happen but it wont be mel..I believe with all my heart that the prayers i have received have helped me get this far in my melanoma walk. I read so many post on here and feel ashamed to report anything good when so many here are suffering. I've learned how to pray and to believe from you all. I have learned too be strong and brave. I have learned to love people i don't even know. I thank you all from the depths of my soul. I will be sending up prayers for you all everyday. You all are special to me even if i don't post it all the time. I just get to emotional and cant, but you are always in my thoughts and in my prayers..May God Bless You All With His Grace..

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Lisa13's picture
Replies 17
Last reply 5/15/2011 - 5:50pm

I wrote yesterday about getting rejected from the ipi/placebo trial in Montreal because they found some suspicious, tiny nodules in my lungs. They're too small to clearly see what they are, but they definately seemed concerned it's melanoma (up to 20 small nodules). I just had a Petscan at the end of February, plus surgery and a lymph node dissection and had clear CT scans as well. 2 months later, I've got these nodules and I'm scared out of mind. It's kind of a blessing I got screened for this trial, otherwise I wouldn't have gone in for scans until the end of June!!  I'm hoping since it's early, we can start trying to treat this. 

I have an 18 month old daughter, my husband and I just bought a home thinking melanoma wasn't coming back anytime soon and now I'm crushed. My oncologist suggested on the phone to wait a month to see if they grow, but I'll be telling him next week, I want treatment right away.  Why would I give this dreadlful disease a chance to invade my body??

First of all, since these are very small right now, can systemic treatment possibly make them disappear? Can it also help to kill any other rogue cells that are floating around or keep it from coming anywhere else?  I'm going crazy and have to wait till Wednesday to get any answers. My oncologist mentioned IL-21 and I"m willing to do anything.  Please let the Stage 4 people come on here and tell me there is hope that I can keep this from spreading.  I want to believe that this is a mistake and this won't be melanoma and will all disappear.   I went from being hopeful to utter despair.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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mayeast's picture
Replies 3
Last reply 5/15/2011 - 11:21am

After 8 weeks I have been taken off this clinical trial because of increased METS in the  liver, ( 12 up to 20). I did have some decrease in size in other areas, but not enough. I am now going to try Temodar.

Stay in the moment.

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FormerCaregiver's picture
Replies 13
Last reply 5/15/2011 - 10:57am

If you were newly diagnosed today and your oncologist recommended interferon treatment but didn't
say much about the alternatives, what would you say?

Thanks for any opinions that you may have.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Vermont_Donna's picture
Replies 26
Last reply 5/15/2011 - 10:11am

Hi everyone,

I had my 12 week checkup including a PET/CT scan, labs and melanoma oncology checkup today. My PET/CT scan is completely clear of the hot spots from three months ago, except from where I have 11 month old poorly healing wider excision wounds on my lower calf. All other suspicious hot spots are now gone. My melanoma oncologist has declared me a complete responder to Ipi and I will NOT have further Ipi trreatments, unless I notice a re-occurence or it shows up on my next PET/CT scan, scheduled for 12 weeks from now. The clinical trial coordinator had thought a few weeks ago that I would receive another four infusions but now that Ipi is FDA approved the trial I was in is closed, so no more doses per the trial protocol. I am fine with this.

I am hoping that all others who are on Ipi have as complete as response as I have!

Vermont_Donna, stage 3a, NED x 3 months

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Replies by: shellebrownies

My husband was given this as a trial option on May 6th; now I cannot find anything about this trial on ClinicalTrials.gov or Cancer.gov. Is it possible this is closed?

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Terra's picture
Replies 6
Last reply 5/14/2011 - 4:59pm

Our onc is suggesting TIL or IPI.  I know about ipi but not TIL:

All I know is they take out a metasis and immune cells grow them and put them back in his body to fight - is this correct?  Also, do they provide chemo while taking out his immune system and how long will this take and how will he feel with  no immune system and chemo - we are trying to possibly get them to do the surgery - freeze and then have derek take ipi and if not work return for til treatment - onc thinks that this is promising - please explain about til trt - thank-you. 

 

Really need to make a decision b/c our third abbay is due in 3-4 weeks.  Thanks in advance for your help.\

terra

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