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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Nebr78's picture
Replies 2
Last reply 5/17/2011 - 2:08pm

I have one thing then another with this M-stage iv.  Lumps, tingling, weakness all over.   Now this:   There was always supposed to be a small mass on my lower spine but caused no problem.    For about 2 weeks now, sever pain in lower left on my back.    Pain pills having hard time challenging it.

Took a ct scan and waiting for Dr. to give results.   He said possibly if mass grew  it could cause the  pain..  Some of the other stuff has left.   He said if mass has grown he will recommend radiation.  Just got done with a bunch of that on face, chest.

If anyone has had a similiar thing I would appreciated you telling me.   Remember I am 79yrs. old and have heart disease for 40+ years.

I think I am going to have a raffle so my wife  can have some money.    Sell ticket to see which one: (heart or Cancer)  gets me first.  !!!!!!!!!!!

I seem  to learn more about me on this forum than when I go  to Dr.   Which is 3-4 now.     Thanks

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itsmitzi's picture
Replies 9
Last reply 5/18/2011 - 11:07pm

I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

mitzi

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Shelby - MRF's picture
Replies 4
Last reply 5/17/2011 - 3:40pm
Replies by: Ali, washoegal, Charlie S, King

We are happy to report that in the next couple of hours, the bulletin board changes that you recommended to us will go into effect.  They should be fully implemented by approximately 4pm EDT today.  This change will make the bulletin board topic posts sorted by the topic post date, rather than by the last comment date.  This will be the default.  You can also choose ascending or descending.  You will have the ability to sort it "the old way" (by comment post date), should you want to.  It will remember your preferences only if you have a registered profile. 

Thank you very much for your patience and please don't hesitate to contact me if you have any questions.  Have a wonderful day!

Shelby - MRF  

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carol b's picture
Replies 7
Last reply 5/17/2011 - 10:16am

Well,, 4 of my tumors have disappeared, no sign of them at all. YEAH!!!!  The Huge one under my arm has grown 3 more cm. It was no surprise as you can literally sit and watch it grow.. I have a small 3mm mass on my tenth rib and a small 5mm mass on my right lower lobe of my lung. Neither has been tested to be cancer.. I refuse to believe it is as there could be so many more benign things that they could be. I have a spot on my hip bone with FDG uptake. I'm gonna say that where they took out a piece of bone for a spinal fusion in 2000.. I'm refusing to believe my cancer has spread. I will get my IL2 on Wed. and it will knock out any little thing i have, I believe this From my very soul. God is holding me and he wont let go. My prayers are all with you on your journey, what a horrible disease this is. It affects every one that loves us. Its as if they have it to. They have the same feelings we do but do not ponder on it like those of us with the disease. Myself i have rather have the disease than to have to watch someone i love die slowly.. Anyways. i will say prayers for caregivers as much as for you that has the disease. I want to thank all on this board for helping me get thru this. Its amazing how a few little words from someone you have never met can make you strong..

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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Carol Taylor's picture
Replies 1
Last reply 5/19/2011 - 3:59pm
Replies by: TracyLee

Something I've just created. Find the words and phrases listed. "Melanoma" is odd because I couldn't get the letters to line up right, so either play with it and correct it, or, give yourself an extra point for finding it.

       SEEADERBMATOLOGISTRMPALEHIRU
       YU SQMIUBESUNSMARTMLSIWNILIHS
       OUSEASUNBLOCKDONTBESTUPIDEG
       GEDROHGIBANTANNINGBEDSCORUI
       RESFGOWIIANOTOSUNBURNSXMART
       SPPLEASEKNOWTHESKINYOUAREIN
       KNOWYOURMOLESBYHEARTPORWN
       MAPLIKNOWABCDSOFMOLESLKPHW

Melanoma

See a dermatologist

Be sun smart

Use a sun block

Don’t be stupid

Ban tanning beds

No to sunburns

Please know the skin you are in

Know your moles by heart

Know abcds of moles

Pale

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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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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Carol Taylor's picture
Replies 4
Last reply 5/17/2011 - 10:42pm

Janner and Michael, I may have missed it and if I did I'm sorry, but I haven't noticed posts from either of you lately and I'm hoping you're each well and doing OK. You're each missed greatly! Like I said, there are so many pages of threads I may have missed something, but you haven't shown up in my email notifications, so just checking on you.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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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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Replies by: triggerfish, boot2aboot

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

Abstract:

Background: Serological typing for both HLA class I and class II antigen expression, has previously shown association of specific HLA antigen expression with clinical response and survival in patients with metastatic melanoma treated with IL-2 (e.g. HLA-DQ1). Purpose: To evaluate the impact of HLA class I (low-resolution) and class II (high-resolution) expression, on the outcome of high-risk melanoma patients receiving adjuvant high-dose interferon. Methods: 181 stage IIB, IIC and III melanoma patients (88 female and 93 male), median age 52.1 years and 246 healthy controls were included in this study. DNA was used for the determination of HLA-A, HLA-B, HLA-Cw, HLA-DRB1 and HLA-DQB1 genotypes. Results: With a median follow-up of 37 months, 59 (group 1) patients have remained with no evidence of recurrence and 122 have recurred (group 2). Statistical significant differences between the two groups, were found in the following genotypes: HLA-A*02 (42% vs. 57.3%, p=0.08), HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 34.4%, p=0.01), HLA-B*57 (11.8% vs. 2.4%, p=0.02). Statistical significant differences between group 1 and healthy controls, were found in the following genotypes: HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 28.5%, p=0.05), HLA-B*57 (11.8% vs. 4.5%, p=0.05), HLA-Cw*03 (23.7% vs. 11%, p=0.01), HLA-Cw*06 (27.1% vs. 16.1%, p=0.06), HLA-DRB1*0701 (27.1% vs. 13.4%, p=0.01), HLA-DRB1*1601 (35.6% vs. 22.3%, p=0.01), HLA-DQB1*0202 (23.8% vs. 10.1%, p=0.09). Conclusions: Statistical significant differences were seen in HLA-A and HLA-B alleles between the patients with high-risk melanoma free of recurrence and those who recurred after treatment with adjuvant interferon. Additionally, differences were seen between healthy controls and melanoma patients free of recurrence.

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

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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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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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Anonymous's picture
Anonymous
Replies 8
Last reply 5/18/2011 - 8:30am
Replies by: Carol Taylor, boot2aboot, Anonymous, Lisa13, Charlie S, nicoli, akls

I am very unhappy with the way my family looks at skin cancer, Melanoma.  I was diagnosed with stage IIIC Melanoma June 2010.  I have never been one to go indoor tanning, but my sister, mom, and neice who is 15 have gone and my neice is still going.  My neice feels the need to be tan like all her friends no matter what the risk is.  I have shared information with my family but it seems like no one is taking this seriously.  My sister who would lay in the sun for hours for years has never had any problems.  My mom who tanned indoors for years never had any problems, but me who was never really into tanning got Melanoma.  My neice also does the relay for cancer walk every year.  I don't know if she just feels like this could never happen to her, or she just does not want to think about it.  Not sure.  How do you make people understand how deadly this is? My mom has a spot on her back that is as big as my thumb nail and has several different colors in it and she does not feel like it is an emergency to go to a dermatoligist to have it checked out.  Am I just over reacting?  They have all seen what I have gone through for the last almost year.  I am into my 7th month of Interferon shots.

Don't sweat the small stuff. There are bigger fish to fry!

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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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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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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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