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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rbruce's picture
Replies 4
Last reply 9/19/2011 - 8:54am
Replies by: Anonymous, rbruce

I just received the following link from my niece who works for Enduro.  This is a small company working on vaccines, that will now include melanoma.  There is so much good research going on now after so many years of nothing new for melanoma.  I hope and pray that this trend continues and that soon melanoma will be a chronic disease ather than a terminal one.  http://www.businesswire.com/news/home/20110913005279/en/Aduro-BioTech-Announces-Grants

I am looking at 2 trials at UCSF that will be opening soon as my biochemotherapy is done with no disease progression, but no reduction.  They are trying to roll out an anti-PD1 trial in November but I feel like I need to do something between now and then.  Next scans are at end of this month which will help me determine what to do, and when. 

God bless all of you that are battlling this disease.  Just remember, there is hope for all of us as new treatments are found every day.

Robert

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Gracie's picture
Replies 11
Last reply 9/17/2011 - 9:30pm

I am scheduled to begin IL2 Monday morn.  I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b.  I had no tumors till now.  Presently I have 2, one in lung, one on chest wall.  I was unblinded today and yes, I was getting the ipi.  I guess you would say, "I am not a responder."  So now we try IL2.  My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation.  I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi.  I was hoping to hear from someone on the board sooner.  I am having second thoughts about doing IL2.

Have any of you experienced IL2 after ipi?

How were the side effects for you?  perhaps more intense?

Were you a responder to IL2?  (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)

does anyone know if you don't respond to ipi you are as likely to not respond to IL2?

Has anyone experienced a bowl perferation and what is the long term repercussion?

I am very thankful for this board and all of you...a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc. 

Gracie, stage 4

cancer is in my life, but is NOT my life

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Gracie's picture
Replies 3
Last reply 9/16/2011 - 6:31am
Replies by: jim Breitfeller, Lisa13

I am scheduled to begin IL2 Monday morn.  I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b.  I had no tumors till now.  Presently I have 2, one in lung, one on chest wall.  I was unblinded today and yes, I was getting the ipi.  I guess you would say, "I am not a responder."  So now we try IL2.  My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation.  I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi.  I was hoping to hear from someone on the board sooner.  I am having second thoughts about doing IL2.

Have any of you experienced IL2 after ipi?

How were the side effects for you?  perhaps more intense?

Were you a responder to IL2?  (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)

does anyone know if you don't respond to ipi you are as likely to not respond to IL2?

Has anyone experienced a bowl perferation and what is the long term repercussion?

I am very thankful for this board and all of you...a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc. 

Gracie, stage 4

cancer is in my life, but is NOT my life

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Replies by: mombase, lhaley

Today is Day 15, last of the treatments. We wait about 2 months before she is rescanned to see if there is any impact and if there is any spread of the melanoma in her spine. It's been a very benign treatment, especially compared to brain radiation. The daily trek to the radiation center was about the only downside, but we got to know a part of Seattle we had not spent much time in before (Ballard - an old Scandanavian part of the city that is now a hip, active and interesting destination).

She still has some pain in her lower back where they identified a large tumor (separate from the area where they found 12 tumors and believe the cancer is coating the epidural walls), so apparently no shrinkage of the tumor has occurred yet. The treatments themselves were short - about 12 minutes - we got there at 11:30am each day and usually we were out by 12:10.  She experienced no pain as a result of the daily treatment or any skin irritation. She didn't like that the room with the machine was kept at 64 degrees because of equipment sensitivity - even though she got blankets and wore socks and mittens. After each treatment she would be unsteady for a while - I suspect because of the impact of radiation on nerves controlling lower extremity function. They would resolve by the late afternoon, but she did have one fall when I could not catch her - fortunately only skinned and swollen knees and a bit of neck whiplash.

It is a very expensive treatment (I haven't seen the total bill, which insurance is covering, but I believe it is at least $60,000). But given that 3 weeks ago we were told it was untreatable, and continued growth of the cancer would lead to a lot of pain and paralysis, it's kind of a miracle, and will buy her some time at a good quality of life.

There is no rest for the wicked however - Friday she goes in for a brain MRI with the results visit on Monday - a follow-up to her Gamma knife brain radiation from five weeks ago. They are checking to see whether that treatment had any effect and to see if there are new tumors. 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Gene_S's picture
Replies 1
Last reply 9/15/2011 - 6:34pm

See: http://www.oncologystat.com/news/Trial_Assesses_SLNB_s_Future_in_Melanoma_Management_US.html

Best wishes,

Gene and Judy ( loving wife and care taker)

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

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Gene_S's picture
Replies 3
Last reply 9/19/2011 - 11:17am
Replies by: Gene_S, bs010kbb

Thursday evening at 9 pm (eastern time)

Vitamin D expert and international speaker

 Dr. Marc Sorenson will be interviewed in an audio

presentation online or by telephone.

Listen online at:        http://www.naturalhealth365.com/talkhour

Join us by calling the number below:
 
Date:           Thursday - Sept.15, 2011
 
Time:           6 pm (PST) / 9 pm (EST)
 
Call-In #:      760-569-7676
 
Access Code: 815676#
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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DebbieH's picture
Replies 32
Last reply 3/3/2014 - 5:47pm

It looks like Mark, below, and other newly diagnoses stage 3 people could use some encouragement. 

Let's let them know we're still here and doing well.  If I hadn't seen a lot of this when I went to 3C in 2001 I don't know what I would have done.

So, I'll go first, DebbieH, stage IIIC, NED 10 years last Sunday, 9/11/2011.

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newmanmark's picture
Replies 5
Last reply 9/16/2011 - 9:30am
Replies by: Anonymous, jax2007gxp, akls, EmilyandMike, DebbieH

Hello all,

I posted last week about a lump that I discovered on my elbow.  I met with my oncologist yesterday and he is not overly concerned.  He thinks that it is likely connective tissue as the tip of the elbow is not a usual spot for lymph nodes.  He told me to monitor it for now.  I'm feeling much better after that!

I know that there will likely be many more scares to come.  I need to learn how to manage the fear and anxiety created by these experiences.

At this time I would love to hear from any stage 3 patients who are continuing to live with NED!  At times it feels inevitable that I will have to deal with melanoma again.  I try not to think this way but its difficult.  I have a 1.5 year old daughter with another child on the way.  The thoughts of potentially leaving them devestates me.

Mark (Stage 3C)

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Shelby - MRF's picture
Replies 1
Last reply 9/15/2011 - 11:54pm
Replies by: JoshF

Don't forget to register for our FREE patient symposium in Chicago, IL on October 1, 2011 at the Hilton Garden Inn - Downtown/Magnificent Mile.  Registration and breakfast will open at 8:15 am and the symposium will begin at 9 am.

Dr. Howard Kaufman at Rush University Cancer Center has assisted us in planning a wonderful and informative agenda for the day!  Use the following link to learn more!

http://www.melanoma.org/get-involved/1st-annual-chicago-melanoma-patient-symposium 

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lizard's picture
Replies 1
Last reply 9/17/2011 - 10:32pm
Replies by: MariaH

Hi all

Just wanted to give a quick update and a huge thank you to all who responded to my earlier post. The gist of my question was that my wife has stage 3a and we were debating taking and scheduling the interferon. My job takes me out of town and we were trying to figure out how bad it was going to be - if I could safely leave her for a day or two.

We did decide to do the peg interferon and she gave herself the first injection Monday night. The only side effects so far have been waves of high fever, headache, serious fatigue, and backpain. This has been constant since the injectction, but nothing worse than that. She is trying to drink a lot and eat mild foods. With any luck it only gets better as things progress and we get back to something that feels like "normal" life soon.

See you

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Sherron's picture
Replies 3
Last reply 9/17/2011 - 3:50am

Thinking of you, and wish the you the best.

Take Care,

Sherron, wife to Jim FOREVER

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jmmm's picture
Replies 18
Last reply 5/27/2012 - 10:31pm

My husband will be starting Zelboraf in the next week or so.  What "real" side effects can he expect--I know we have the information the dr. read us from the website (my hubby is the 1st patient his doctor has on zelboraf).  We just want to know what other patients are experiences and any suggestions on things that can help him feel better on the medicine.  Thanks for any help!

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j.m.l.'s picture
Replies 5
Last reply 9/15/2011 - 8:02pm
Replies by: Anonymous, Lisa13, AlanM, j.m.l., jmmm

Thank you all for your advice and best wishes. Thurs. I start IPI for first round. Have stage III mela. and spreading. Newest tumor on vein and nerve cells. Had 4 prev. operations but now time for systemic help. ANY HELP FOR DEALING WITH TREATMENT, ETC GLADLY WILL BE READ.

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Bill G's picture
Replies 9
Last reply 9/17/2011 - 4:20am

this month.  Stage IIC on top of head with satellites.  Given odds of less than 25% for 5 year survival because of its depth and closeness to vascular system.  Breathing easier thesse days.  My thoughts and prayers go out to all for positive outcomes

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