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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Anonymous's picture
Anonymous
Replies 27
Last reply 7/13/2011 - 5:50pm

I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma. My family doctor said it was nothing to worry about, but when I noticed it getting bigger and starting to hurt, I said " I want it off". It turned out to be melanoma in a lymph node. I went to the B.C. cancer agency in Vancouver, the oncologist looked me over, and I was given a full body FDG pet scan.  The pet scan was negative.  There was no Sentinal node biopsy, and nothing else done. I was told to see the oncologist in July. The last 3 weeks. I've had diareha which is unusual for me, and I have soreness in my armpits although I can't feel any large glands other than a pea shaped gland under each armpit. I was surprised the Cancer oncologist  didn't mention any chemo or other protocol to help me beat this. I am scared and would appreciate any advice you can give me. I pray for everyone going through this disease. Any prayers you can spare are much appreciated.

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TracyLee's picture
Replies 2
Last reply 7/13/2011 - 3:42pm
Replies by: nicoli, Carol Taylor

Hi y'all,

Anyone else have little "zit" type bumps, extremely painful, that send burning zaps up your head?

Onc doc says it's melanoma attaching to nerve endings (lots of surgery in that area).

Hurts like the devil! Taking Neurontin to "calm" them down, and Oxy for pain.

Terrible time trying to sleep, just call me Sleepless in Delaware!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: jim Breitfeller

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

 

Thanks!

 

Julie

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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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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

 

Thanks!

 

Julie

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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 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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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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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,

Steve

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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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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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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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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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