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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MariaH's picture
Replies 8
Last reply 7/13/2011 - 10:51pm

Dave and I met with Dr. Kushilani at Roswell today.  Very articulate, intelligent, and personable.  Went very well.  He offered up every option I have researched and even encouraged us to think "outside the box" of melanoma treatments (I.e. clinical trials).  After research, and speaking with all of the clinicians (including the surgical onc who did Dave's LND, who Dave has great respect for) I think Dave is leaning towards IL-2.  He is very healthy with metastases to the paratracheal lymph nodes only, and it really is the only treatment showing complete response in any percentage of patients.  He is healthy enough now to try it, where as if his disease progresses, he won't be.  If IL-2 fails, then he recommended IPI, and if that doesn't work, his tumors are being tested for B-RAF.  I have contacted NIH about the trials with TIL and IL-2, but they are only available if he has failed a prior treatment. 

I am curious though, has anybody heard of radiation prior to IL-2?  I could have sworn I heard of at least a trial which was promising.  If any of you know of this, can you let me know?  I have heard that it increases the chances of an IL-2 response.

Best wishes to all the fellow Mel Warriors,

 

Maria & Dave

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Harry in Fair Oaks's picture
Replies 7
Last reply 7/13/2011 - 2:00pm
Replies by: Harry in Fair Oaks, Anonymous, dawn dion, jneubert02

...at my appointment at the Angeles Clinic.  Everyone said the same thing:  He is definitely still with the clinic, and he is on "indefinite leave."  I was told to still consider him my physician of record. 

The appointment marked the end of my 8 weeks on the GSK BRAF/MEK trial (I was randomized to the most amount of both drugs).  I am very happy with the results of the latest scans:  They can't find any trace of the sub-Qs, and all the bone mets appear to be smaller!

I'm also happy that the side effects have abated.  No more fevers or chills for the last 3 weeks.  Perhaps just some fatigue now and then.  My nurse told me that taking the BRAF and MEK together seems to lessen the effects of the dugs taken by themselves.

Best wishes,

Harry

 

 

 

Too ugly to die!

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We'll be hosting a patient symposium in Chicago, IL on October 1, 2011 if you are in the area.  The tentative agenda has just been posted.  Let me know if you have any questions!

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

Shelby - MRF

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triciad's picture
Replies 6
Last reply 7/12/2011 - 4:34pm

Hi Everyone,

I hope that you all are enjoying the hot days of summer.  I am hoping someone out there can shed some light on my situation because this is where I have learned everything I know about melanoma.  I am so grateful for all of your wisdom and guidance throughout this journey.  I haven't met any of you, but I trust you like family!

My battle began 2 years ago, July 09.  I was staged at 3B.  Had 3 positive nodes in my groin area and complete resection of melanoma tumor from the center of my VERY lower back...top of my butt crack to be exact...sun never shined there!  Did a complete year of Interferon.  Last scans in Feb 11 - all clear.  Last oncologist visit May - bloodwork all normal.

On Saturday, I felt a small bump, like a mosquito bite, at the top of my left butt...same side as melanoma.  Felt like a marble under my skin.  Went to Urgent Care facility for some guidance.  Do I call oncologist, dermatologist, or surgeon?   Doctor said not to worry...it was a sign of aging,  melanoma develops at the bone and this was right under the skin.  I should go to dermatologist because of my history and for peace of mind.  Needless to say, I ran out of there so fast!

Yesterday, I went to dermatoligst who tried to excise it but couldn't.  She said it was too deep and moved during the procedure.  She immediately called my oncologist and surgeon, scheduling appointments with both,  Thursday I see my oncologist and Monday the surgeon.

Has anyone out there had a similar experience?  Does it have to be a sub-q or could it be something else?  Any advice would be greatly appreciated...thanks!

Sleeplessly yours,

Tricia

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MaryBeth and Jeff's picture
Replies 8
Last reply 7/12/2011 - 10:25pm

My husband has completed 3 of 4 Yervoy  treatments (his 4th treatment is this Friday). He has tolerated it extremely well.  No rash, no colitis,some fatigue. One week after the 1st treatment he did not felt slightly flu like and developed slight pnemonia. This lasted for about 1 day. One week after his 2nd treatment he felt a little bit worse and was tired for about 3 days. After 3rd treament ...he felt virtually fine. I have read posts on here about doctors getting excited when the "yervoy" rash develops..meaning that it is working. I am getting scared that Yervoy is not working. Since his 1st treatment he has developed a mass on his back and several other "lumpy" areas on his arms and legs. His onc just looks at the lumpy areas and says that its the melanoma breaking off and taking up residence elsewhere. For know he just wants to keep an eye on the mass on his back as it is close to his spine. (It was MRI'd). Here is what gets me ....I spoke to his onc tonight and he asks me how far have we gotten on his meds? I ask "what meds". Onc says the Thalidomide and Temador. (we discussed this last week as a next course of action if he fails Yervoy). I had to tell the onc that we havent gotten that far. Onc says we shouldnt wait for the last Yervoy treatment and begin with the Thalidomide and temador. I told onc ...heck no...his final treament is this Friday...we might as well do it. He then agrees with me. I then have to practically school the onc and remind him that  the literature indicates with Yervoy , the mel often gets worse b4 it gets better. Am I wrong here? Does the development of an additional mass and lumps mean Yervoy failed for my husband? I did ask this of his onc and he says he believes it failed. By no means will I hold off on the T & T treatment...but is it fair to decare Yervoy failure b4 his 12 week and 16 week scans?  (I apologize if this post seems rambling)

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gabsound's picture
Replies 12
Last reply 11/21/2011 - 7:22pm

Has anyone done biochemo with Temodar, IL 2 and interferon?

I had an intransiti tumor w melanoma cells. My oncologist is suggesting this treatment. I've seen other regimens and wonder if anyone has heard of this one.

Julie in Las Vegas

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Terra's picture
Replies 5
Last reply 7/14/2011 - 3:21am

On June 12, we had a new baby girl, our third girl!  She is healthy, happy, and most importantly she is a fanatastic sleeper!  The birth was very very easy and went well.  Derek had his first ipi injection the day before I was induced, he wasn't sure how he would do at the hospital, emotionally and physically, instead my sister came with me and quite honestly it was probably the most relaxing time I have had in a long time, they were unable to induce me until the next day and so we spent a quiet day in a private room and slept and talked and slept. 

As some of you may remember I had an awful time when I found out I was pregnant and Derek, feeling as though the end was very close, also has had a difficult time accepting that there would be a third child he may not see grow up, many of you responded to my emotional posts of what to do with wonderful words that I printed off the computer and kept with me for a long time.  While, she finally arrived and Derek is taken with her, he is still emotional and struggles obivously, but he thinks she is adorable. 

He has his third ipi injection a week wednesday.  He has been tired, headaches, and some flu like symptoms, but that is all.  I am crossing my fingers it works. 

Thinking of everyone who is here and dealing with melanoma.

Terra

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/12/2011 - 2:19pm
Replies by: washoegal

Hi,

How are you doing. I have not seen you post lately. Are you getting treatment & seeing Dr. Hamid.

Look forward to you posting

Mary

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scotito's picture
Replies 2
Last reply 7/15/2011 - 3:37pm
Replies by: nicoli, boot2aboot

brand new to vemurafenib - two weeks in - not so bad - but sounds like an idiotic question - but what exactly does it do to you that saps your energy?  and does anyone have a reco other than caffeine? 

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Linny's picture
Replies 4
Last reply 7/12/2011 - 9:49am

Today I had an ultrasound done to investigate an abnormality that was found near the surgical site of my lymphadenectomy duing a CAT scan. When I posted my initial note your words of encouragement helped keep me calm through the wait for the appointment. Can't even find the words to let you know how much that meant to me.

I had good news today! The abnormality was nothing more than a bulging blood vessel -- a result of the sugery I had done back in January. I felt a huge sense of relief when the tech said she was not able to spot anything. It took both her and the doctor to find the culprit. The Doc said the bulge was nothing to worry about and that it was part of the healing process. He also confirmed that I have absolutely no lymph nodes left in my left arm pit. The surgeon apparently got them all. :-)

So I'm still NED and pray I remain that way.

Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/12/2011 - 2:25pm
Replies by: washoegal, Anonymous, Carver, ValinMtl

Hi,

I am a newbie & need you advice.

I had sugery to remove a 2cm tumor from my upper thigh 4 weeks ago. The doctors needed to go down into the facia of the muscle to get clear margins.

He did NOT put in a drain. I got  a very large seroma (fluid build up) on my incision that is not going down. The fluid is  around & on  my incision & it is very sore & sensitive.

On top of everything else, last week the seroma got infected so the doctor used a needle to drain the seroma to do a lab culture & put me on atibiotics.

I finally got some relief when he took out fluid for the lab culture but within hours the fluid came back. When I sleep at night with my leg elevated, the next morning the fluid has NOT gone done.

I have a appt with the doctor tomorrow so I would appreciate any experience/advice with seromas you might have. Is it too last to put in a drain? The doctor told me that draining the fluid out with a needle, puts me a risk for infection again.

Thank you for taking time to read my post & replying.

mary

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Jeanne's picture
Replies 3
Last reply 7/15/2011 - 2:25am

Is anyone aware of a correlation between melanoma and breast cancer?

Thanks

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Shelby - MRF's picture
Replies 1
Last reply 7/11/2011 - 11:32pm
Replies by: JerryfromFauq

A Washington, D.C. area television station contacted the MRF for assistance in setting up an interview about the dangers of tanning.  The station is looking for someone to interview about why they stopped tanning.  The reporter would like to find someone in their 20s who is available for an on-camera interview in the D.C. area.  The reporter is particularly interested in speaking to ex-tanners who have received a melanoma diagnosis.  If you’d like to be interviewed, please email Jenni@JonesPA.com by Wednesday morning. 

Thank you for your help!  We appreciate your assistance drawing attention to this issue. 

Shelby - MRF

 

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ValinMtl's picture
Replies 5
Last reply 7/21/2011 - 8:45am
Replies by: Vermont_Donna, ValinMtl, Anonymous

Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a blessing...it saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600...thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly during the past 3 years with all the meds and support hose.  Val xx

Live Laugh Love Nothing is worth more than this day!

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Sherron's picture
Replies 8
Last reply 7/14/2011 - 5:31pm

is the day I came  home and saw Jim on the phone.  He looked bothered, distressed, worried etc.  I knew it was going to be bad.  We had just been to the Derm on July 5th.....She told us, it was nothing!  But is was something, it was Nodular Melanoma on the lower scalp, and it was vascular invasive, with a moderate mitosis.   I will not into our story, you can read it on my profile, if you wish too.  Jim won his fight with Melanoma on November 30, 2010, when the angels came and took him home.  He will always be my warrior,my hero, my best friend, the love of my life, my soul mate, the wind beneath my wings, my everything.  He had 4 years + 2 months of absolutely great life living his way, "QUALITY TIME" with no treatment, except alternative.  He had 3 months of discomfort and pain. 

It is time for me to leave the wonderful Bulletin Board, because I tend to get too involved....it is time for me to try to heal, deal with my grief, without reading of others going into this battle...I will check in maybe 2 times a year, but not on a daily basis.  I want to thank each and everyone of you who encouraged me, did not balk at Jim's decision, but gave me support...That is what I needed.  He made his decision, and never looked back.  He is  IN a much better place and I look forward  to joing him someday...For now, I am going to try to live my life, best as I can, love my children, and grandchildren.

"This is the day the Lord hath made, be glad and rejoice in it"

"I can do all things through Christ who strengthens me"

 

I wish the very best for all of you...

Take Care,

Sherron, wife to Jim FOREVER

P.S.  sorry for all the underlining...I only wanted in in 1 place, but could not get it undone...

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