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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Steve's Gal's picture
Replies 6
Last reply 10/28/2011 - 11:38pm

My husband, Stephen,  was recently diagnosed with Stage III melanoma. He went through exculpatrory surgery on his knee, sentinal biopsy with a few nodes removed.

He declined to have all nodes removed from his groin basin. We were told that the next step would be Interferon. 

His oncologist stated that here in Canada that would be our only course of treatment, that there was nothing else offered. Have any other Canadians experienced this?

We decided to go with the wait and watch approach.  Steve went for his CT scan almost two weeks ago, we are expecting the results on Monday. I am really  nervous now. I was fine last week but now I am scared of what the scan will read. SO fingers crossed that it will come back NED.  

Anyhow, if there are any other Canadians that have been offered any other treatments or clinical trials or even if you could point me in the right direction. I just want to make sure we are informed on all decisions we make.

Thank you all so much, I am very grateful to be able to share with you.

Karrie

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MariaH's picture
Replies 8
Last reply 10/28/2011 - 5:44pm

Well, after waiting 2 hours for the radialogist to read the results of Dave's PET, we got the results.  Although Dave's mets in his chest did shrink by about 7mm, there are new mets near where the original LND was.  He has a new positive node, and the soft tissue mets have increased in size from approximately 8mm to 1.5cm.  His oncologist feels that the decrease in size of the mets in his chest was due to the radiation he had prior to IL-2.  Therefore, it was ruled that Dave was not a responder.  He wouldn't have done another round anyway.   The good news is that his liver and brain still look good, and all the mets seem to be confined to the "general" area of his original spread and in the upper right side of his body.

That being said, he is still taking 40mg of prednisone a day to combat the optic neuropathy.  Because of this, he cannot do any form of immunotherapy until he is off of them.  This excludes him from taking IPI or a possible anti-pd-1 trial.  Since he is B-RAF negative, this is limiting his options.

All is not lost however, as his oncologist has recommended Temodar.  I know response rates are low with this chemo and my first thought was that there had to be something better.  He handed us a study report of continuous low dose Temodar after unsuccessful HD-IL2, and it was promising.  If anybody is interested in it, let me know.  This was a study, not a trial (although there is a phase II trial going on right now using this protocol).   Of the 9 patients studied, 6 had "an excellect objective response to treatment which occurred fairly rapidly".  Two have finished the one year dosing and have complete responses that have been durable without further treatment.  And, I might add, these were heavy tumor burdens. 

The Temodar should be started within 6-8 weeks after finishing the IL-2, and is administered orally at 75/mg for 21 days per one month cycle.  The science behind it makes sense (feel free to chime in Jimmy B!). 

So, although not what we were hoping for, it could have been much, much worse.  We'll take what we can get and move on.

Best wishes to all the mel warriors out there,

 

Maria

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Harry in Fair Oaks's picture
Replies 8
Last reply 10/28/2011 - 3:09pm

I'm well into the 6th month of the GSK BRAF/MEK study, taking the highest dosages of the 2 drug combo.  I'm happy to report that, as of the scans I had on Monday, all mets have either shrunk to sub-clinical size (i.e. cannot be imaged by MRI or CT) or (in the case of a couple of bone mets) seem stable.  The bone mets may actually be non-viable, but the damage they previously caused will probably always show on the scans.

Very few side effects to report - most went away after the 1st few weeks.  Apparently the BRAF/MEK combo results in fewer patient complaints than the BRAF alone.  And according to staff at the Angeles Clinic, so far they have not seen the dreaded acquired resistance to the combo inhibitors (that has been a problem with BRAF alone).

Best wishes,

Harry

Too ugly to die!

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/28/2011 - 3:01pm
Replies by: jag, W.

I had a Lobectomy in April 2011 for a Metatisised Malignant Melanoma stage 4. Primary was possibly an in-situ MM removed from my ear lobe in 2006 but that is speculation. No other primary could be found. I was not put on any treatment. I was due to have my first follow-up exam in August 2011 but in July I was experiencing some severe pain in my rib area on the same side as the surgery. Felt and still feels like a knife being jerked around inside me. The pain is not ongoing but comes in bursts but very seldom at night so generally I have a good night's sleep. Various scans were undertaken and the following were the results:

CT Scan of lungs with injection - pseudo tumor - no worries.

Oncologist not happy so full body bone scan - shows possible tumor on 7 / 8th ribs but this scan highlights all bone irregularities so the assumption is that rib damaged during lung surgery. Given a nerve block and pain tablets. No worries according to surgeon.

I wait 8 weeks, pain remains, go back and a very clear Scan of my ribs only indicates that I have a delayed rib repair. Blood count shows clean for cancer. I get referred to a Physiotherapist. They conjure all sorts of reasons for the pain and I get some very aggressive treatment and am pretty well bruised. It seems nerve ends trying to heal and masses af scar tissue account for most of the pain. After each visit new pains develop and they deal with these. I have now had 5 weekly treatments but the basic pain in the same spot of a knife that also feels like a very bad stitch remains. I am not really responding - or am I?

The bottom line is this - is there anybody out there that may have experienced similar issues and if so, what was the diagnosis? Is it something that will go away over a period of time after the operation, or not?

My other question is - apart from a bone tumor (which, I understand, is painful but thank God, it appears not to be) is there any other Metatisised MM that is painful (i.e. a tumor say behind the ribs like where I am experiencing the worst of the pain) because it is pressing a nerve or something. Is this possible?

My issue is that they did not do a PET Scan as I thought they were going to do and it freaks me out that maybe there is a painful tumor inside me that we are not aware of, which also did not show up on any of the scans they took.    Please help me with an answer so that I can put this to bed.

I see such wonderful responses in this bulletin board and really trust that someone out there can help me.

The sun shines at the dawn of each new day even though it may not always be visible.

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NYKaren's picture
Replies 7
Last reply 10/28/2011 - 6:50am
Replies by: MariaH, NYKaren, King

Hi all,

I hope someone here might know what this is:  (I have scans this thursday night and PET on Monday, so I'm quite worried)

I feel a pain and a golfball size lump, palpable, just to the right (my right) of my belly button.  My measurements might be off 'cause I had tram-flap reconstruction following mastectomy so that area was moved around quite a bit.  Also, there is mesh from hernia repairs just underneath the lump

Does this ring a bell to anyone?

many thanks,

karen

Don't Stop Believing

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I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

And before people tell me we shouldn't take that for an answer and to get second opinions... I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

Thanks; you all are awesome!

Michelle, wife of Don

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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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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nfumarolo's picture
Replies 10
Last reply 10/27/2011 - 7:46pm

I'm brand new to the site.  Extremely frustrated trying to find information and just found this site.  Best thing yet.  Our doctor doesn't know anything about ipi.  What happens after the 4 treatments?  The scan shows the largest tumor has shrunk and the rest remains the same.  Doctor said to wait 5 more weeks and come back for a feel test and bloodwork, but no mention of scans or any future treatment.  Said to call back if it grows.  Anyone out there who has completed treatment.  What are you doing?  Thanks!!!!

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dearfoam's picture
Replies 15
Last reply 10/27/2011 - 6:37pm

Well, I had a rough week taking care of dad. He is not wanting to cooperate when it comes to doing exercises, drinking fluids, etc, and just gets angry at me when I try to remind him of anything. But he is so forgetful - he has to have someone say it's time for meds or whatever - and I just had to decide to only remind about things ONE time, and if he doesn't want to participate in his care, then there is really no use letting him argue with me about it. He also was really rude to his physical therapist at the second session Friday, to the point where she had to talk with me about it off to the side. We had to go to a funeral earlier in the week for a very elderly relative, too, so I am sure thinking about mortality, losing independence, etc, adds up, but it is really hard to turn the other cheek or pretend it doesn't hurt when it feels intentionally rude.
Then after getting home from the miserable PT appt, I find my cat, who was DX with feline lymphoma cancer about 4 weeks ago, is not breathing right. The vet office is closing, and it sounds like she has forced exhalations, maybe fluid in the lungs from chest tumors, but who knows. Has not eaten well for a few days, but has eaten some. Mostly super pureed baby food meats, but I notice she isn't drinking much water anymore (had been on prednisone in addition to other chemo).
Hubby and I go out for some "us" time that evening, and when we come home the poor cat is even worse. She could walk and sat with us a few minutes on the couch, but fell out of my arms when I took her to her bed - she seemed really tired. I dreamt that night she has died, then woke early to take her to vet on Sat AM. She was laying oddly, with her legs out in every direction. Doesn't fuss to be laid in the carrier.
Once in waiting room, I wrapped her in a towel to keep her warm and try to comfort her, pet her, tell nice stories about her. DR isn't there yet so we are all just waiting. Some other folks talk with me, seeing how pathetic she is. They probably saw what I didn't; she was dying right there. She convulsed three times in a span of about 15 minutes, pawing rapidly and locking her arms straight out, panicked looking, unable to support her head. then breathing gradually stopped and her eyes glazed over, pupils enlarged. I couldn't believe it happened so abruptly. I took her to the exam room with an employee to check her heart, about the time DR came in to confirm.
At the time it happened so quickly, I didn't have time to process it al, but the rest of the day and today have been hard, remembering her throws of death, her sad meow, the lolling head, glazed eyes and even the tongue stuck out, the smell of elimination and death.
I realize this isn't a person, you all have seen worse, but I only hope I learned all this so I will handle the inevitable better down the road. I hope I can forget the bad days with dad, I can just feel compassion and sorrow and not feel like I am a source of resentment or whatever makes him so bitter. I feel like I am the scapegoat for him being mad he has cancer. He doesn't talk about feelings at all, he refuses, he doesn't need to, he just acts ugly to me. I wish so bad that bitterness would go away and we could have some more happy moments in this terrible part of life. It is really hard caring for someone who seems to reject you.

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mom3girlsFL's picture
Replies 2
Last reply 10/27/2011 - 6:27pm
Replies by: JerryfromFauq, lhaley

...was NEGATIVE!!!!!!!  Doing the happy dance!  What a blessing!  Thanks to all the support and well wishers.  I am officially NED from last years disasters!  Amen!

Gonna "take a break" from here for a while but I'm sure I'll be lurking around a bit.  Take care everyone - (((HUGS))) and prayers always,

Laurie

P.S.

Yes, a girl CAN dream! LOL!!

Do not fear tomorrow, God is already there.

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trishahimm's picture
Replies 11
Last reply 10/27/2011 - 2:52pm

Hi all,

I have posted here a couple times about my dad, I never did a profile. He had a melanoma tumor on the bottom of his foot and throughout his groin, removed in May. They had to wait for healing to start radiation on both areas and were supposed to start interferon after. He had long delays with healing and before radiation was done, he had several recurrences on his foot a month ago, further extending radiation and postponing interferon and postpong a scan out past the 5 month mark. Then within the last 10 days, he got 2 more on his foot, one in his other groin area, armpit and on top of his head. The Onc freaked and rushed to finally get him to a PET scan on Monday evening. We found out yesterday that he has almost 40 mets visible on the PET scan on his liver, spleen, bones, and 20 just in his lungs. They are going to do a different brain scan this week to see what is going on in there, not sure why.

The Dr. said he has maybe 2 months to live if he decides to enjoy what he has left, or that maybe he can get him a year with poor quality of life with some kind of liquid treatment. I am assuming this isn't interferon, because that is normally not stage 4 treatment right? My dad couldn't remember what he said. He is supposed to meet with the Dr tomorrow to make a decision about this, and we are not educated well enough, as Stage 4 came so hard and fast. My head is spinning.

My question, what are the treatments out there and the process at this point? My dad never asked for a second opinion from a melanoma specialist. They said they had a "tumor board" working on the case, and he felt that was enough, eventhough I insisted and pressured him to get a specialist. Now I feel like I just want to make sure we ask all the questions and mention treatments and make sure this dr knows the latest melanoma information. I have seen on the board here Yervoy, ipi,  IL-2, Zelboraf, Vemurafenib,Temodar, Ipilimamub. Which are used for Stage 4 and should be mentioned to the Dr. tomorrow? Any knowledge would be helpful, I am armed with nothing.

I feel like these Drs dragged their feet and postponed treatments and shot radiation on his foot for weeks and weeks while the cancer raced through the rest of him and now I don't trust them at all. Maybe I am trying to feel a sense of control of something, since this melanoma experience has made us all so powerless. Whatever the case, I feel like I need to do SOMETHING that might help, or at least know that the Drs are worth trusting with my father's life.

Thanks,

Trisha

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mombase's picture
Replies 6
Last reply 10/27/2011 - 11:29am

I was so excited to see this information and I wanted to post here in case anyone would like to see this interview:

 

The 700 Club will air an interview of Joe and Terri Fornear about Joe's miraculous healing from cancer on Wednesday, October 26. Since times and channels vary, check your local TV listings here:
http://www.cbn.com/700club/ShowInfo/Schedule/schedule.aspx

I just finished his book and his recovery from melanoma is quite miraculous. Can't wait to see it!

Cristy, Stage IV

Getter done!

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FormerCaregiver's picture
Replies 1
Last reply 10/27/2011 - 11:11am
Replies by: NYKaren

Undoubtedly, the process of having regular scans is something that can make one very
anxious. Here is a simple relaxation technique that might make it easier to cope with
scan anxiety (or scanxiety):
http://www.bbc.co.uk/health/emotional_health/mental_health/coping_relaxation.shtml

This basic method of meditation could also be beneficial:
http://www.bbc.co.uk/health/emotional_health/mental_health/mind_meditation.shtml

Hope this helps.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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ShariC's picture
Replies 10
Last reply 10/27/2011 - 8:57am

Hi All - I just wanted to check in with the board and say that I've finished my first round of bio-chem.  Brutal!  In fact, I'm pretty scared to go back.  I'm scheduled for 4 rounds with surgery to remove a small tumor in between rounds 2 and 3.  I so much appreciate reading this board, but it also scares me so much.  Losing people at 20, brain mets, etc...I just can't believe this road ahead.  Thanks for all the support, advice and kindness.  - Shari IIIb/c in Nebraska

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patsy123's picture
Replies 10
Last reply 10/26/2011 - 9:58pm

Has anyone been given advice by their doctor on taking vitamin d supplements while on Yervoy? If so, how much to take? I know there are studies on whether vitamin d is helpful in fighting melanoma, but wasn't sure about how much to take, if any, when starting Yervoy.

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