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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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 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,





Too ugly to die!

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nicoli's picture
Replies 1
Last reply 7/13/2011 - 11:03am
Replies by: TracyLee

Keep us updated. Just like I tell my kids.............if you don't keep in touch, I tend to worry.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Hey everyone,


My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.


Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful





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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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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 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 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,


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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! 

Shelby - MRF

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Banu's picture
Replies 7
Last reply 7/12/2011 - 3:23pm

Hi everybody,

Because my father could not get access to Yervoy and lost a lot of time waiting for it, he was supposed to start carbo/taxol on Tuesday, July 5th. However, we had to go to ER on 4th of July, because my father could not have a bowel movement after 5-7 days and was very bloated and in pain. When the ER doctors checked the blood, they found out that his red blood cell count is very low (5) and they admitted him to the hospital for blood transfusion and treatment. So, he could not make it to his chemo appointment and his doctor said that we need to wait a few days and see what is happening with him before we can decide whether to proceed with chemo, Yervoy or any other option that may be of help to my father.

In the meantime, the primary care team at the hospital suggested that it is not a good idea to resuscitate my father if needed, because his prognosis is very poor. A doctor even told me that it would be better for him to pass away from a heart attack than endure cancer. When I told the doctors that we don't want to give up and try every possible option until the end, they advised me to be realistic. I know that the odds are slim, but there are those who were blessed with a response when it was least expected.

My father has been weak in the last few days and was not able to walk on his own yesterday and today. He is not using any pain medication and did not need one until now. He is not giving up and wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

My father is quite weak right now and was not able to walk on his own yesterday and today. He is not giving up though and I believe he wants to continue treatment and try everything possible. I don't want to give up on him either and hope for a miracle.

He had five units of blood transfusion and his red blood cell count is around 8.5.

His LD is 716 U/L, ALT 27 U/L and vitamin D > 135.

Doctors say that his LD levels are too high and that they don't want to remove tumors unless it is obstructing an organ.

I want to find a treatment that may be of help to my father. I need to get him stronger first, so that he will qualify for more treatments. Are there any suggestions? Would you recommend any supplements, products or treatments?

Thank you all for your guidance.

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StevenK's picture
Replies 9
Last reply 7/12/2011 - 2:58pm

There's a dark spot appearing in my excision scar. It's not a scab and it is really scaring me because it seems to be exactly where the orginal lesion was. The wide excision came back with no signs of mm, so how is this possible? Could mm be back just three weeks later? I called my doctor, but he went home at noon. Have to wait until Monday. Is there something else it could be? Blood beneath the skin? Has anyone else had dark spots in their excision scar that scared them?

Thanks in advance for your reply,


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


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.


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


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

Look forward to you posting


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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.


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

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Well unfortunately I was right. One was a pseudocyst with gelatinous material and no melanoma. The second was falling apart as the surgeon took it out and was. Reported as friable with fatty tissue and sheets of melanoma cells..

1 week post op I have a lump in the region where the bad lump came out. The oncologist thinks probably a hematoma related to surgery. Too fast for a 4-5 cm tumor to pop up. It also appears bruised on skin surface. Of course I'm worried about that tumor falling apart and having melanoma cells.

I had a long talk w D Samlowski who discussed treatment options. He thinks 1st choice should be biochemotherapy w chemo drug (which I can't remember name of) along w IL-2 and interferon. I've just started to read a bit and it sounds like there are different regimens. His regimen was 4 days in hospital ICU with above drugs followed by 3 injections of low dose interferon the following week. Two weeks off and repeat 3 more times.

Has anyone done this version? I will find out the chemo portion tomorrow when I call his nurse. Did it work? I don't think the month of high dose interferon did much since this came up so soon ( or maybe it's because I couldn't tolerate or afford the other 48 weeks). This will be at a lower dose and I will just deal with it no matter as I would really like to kick this melanoma to the curb and move on.

He is reserving other treatments in case we need them later.

Any thoughts? We didn't discuss radiation, but I have been thinking maybe the should be done as well? Or before biochemo?

Julie in Las Vegas

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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 by Wednesday morning. 

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

Shelby - MRF


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emilypen's picture
Replies 5
Last reply 7/11/2011 - 9:12pm
Replies by: Terra, CLPrice31, lhaley

Hey All,

It's been a while since i've posted. It's been a rough month or so.

My hubby failed of the braf inhibitor he was on and we've been waiting the required 28 days so he can start IPI.

During that month tumours grew quite a bit, a few new ones popped up. He had to have some radiation to his jaw to control a lesion there and hopefully stop a soft tissue tumour that was pushing around a few teeth.

Plus we moved home to Canada and found out we're pregnant! 

So today is the day! Can't wait to actually be "doing" something instead of waiting.

Curious as to what the fasted is that anyone on IPI has seen improvement? 




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lhaley's picture
Replies 7
Last reply 7/11/2011 - 2:34pm

CLEAR!!!   That means I'm now 5 weeks NED!  However, there is always a however, my onc is leary because the location is so close to the last recurrance, and that recurrance is just .5 inches from the one before that. They are still going to excise the lump entirely to be sure.  I'd rather proactive instead of reactive. Radiation will start again once the lump is entirely excised.  They didn't excise the first time because we had decided since surgery had just been 4 weeks before that if it showed to be mel I was going to go systemic with a low tumor burden.

So, until proved otherwise.... I was NED at my stage IV 5 year anniversary!! 


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