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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carol b's picture
Replies 8
Last reply 10/4/2011 - 3:40am

well, my tumor HAD shrunk enough to do surgery but once again they keep putting off my appointments, I called and told the it was growing back fast on July 5 , But since then it has gotten as big if not bigger than the last time, Each time it grows back it grows faster. Now i have little pimple like things growing on the outside of the skin,, there is 6 of them, i figure they are small tumors because they are growing too. The redness is growing back to,, i was told that is tissue death, Its all the way up my shoulder now, which was never there before, I have it all in my boob and it is swelled to the max and the nipple is turning yellow. Its also spread across my chest, it always stopped right in the center of my chest but this time its spread to half of my other boob,,,i got to  go to vandy Monday to see the surgeon , i pray they just jump in and take out this monster before it kills me but they seem to be taking their sweet time. guess thats my update,, no good news to tell about but i wish i did,, i will comment when i get back from seeing the surgeon Monday to let yall know what he said,, praying for you all always.

Carol B

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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amansinne's picture
Replies 2
Last reply 7/13/2011 - 6:50pm
Replies by: amansinne, MichaelFL

Sorry to make my question so specific, but I was just sent my records, including test results, from my dermatologist and I came across the following for a mole I had byopsied a while back: "compound melanocytic nevus with architectural disorder and mild cytologic atypism of melanocytes (dysplastic nevus, mild)"

Yikes! Can anyone tell me what this means?

Thanks in advance for any help!

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mygirlmaddy's picture
Replies 9
Last reply 8/17/2011 - 2:00pm

My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Boston  and came back with no suggestions.  I don't want to look back at this and feel like we didn't do everything we can.  I can't think of a more knowledgeable bunch than those of you in the thick of it with us.  Thanks for any suggestions.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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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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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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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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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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