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.

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shellebrownies's picture
Replies 28
Last reply 6/25/2011 - 6:36am

Morning all,

I am becoming increasingly frustrated with my husband's care under Dr. Ibrahim. I am hoping that you all will be able to put this into perspective for me and tell me whether I am having unreasonable expectations or not and whether perhaps I should check into moving my husband's case to Dr. Hodi. I know at least one person here has him as their doctor and has given him a glowing review.

I would just like some feedback whether I am being unreasonable in my expectations or if I have some justification in my concern.

We were able to get in to see Dr. Ibrahim at DF pretty quickly (I thought)...less than 2 weeks after starting the process (we had to get all his med records and test results forwarded as well as notes from all the doctor's he'd seen in the 2 years since Don's original diagnosis). From that point on is where my dissatisfaction begins.

At Don's first appointment with Dr. I, she tells him that his original tumor area had been extracapsular and had infected the surrounding tissue, so his chance of reoccurence was high risk. Then she tells him that she was concerned about how quickly the tumor had grown under his arm and was worried it might mean his melanoma was an aggressive kind. 

After that speech, she said she wanted to do a second PET Scan (he'd had one done the week before which showed cancer in more lymph nodes in his shoulder and an area of concern on his left neck) to check for that trouble area again. She wanted 3 weeks between the scans, even after all she said about his high risk and aggressiveness of the mel.

I was not happy about this and questioned her on it, but she said she wanted to give Don's surgical site more of a chance to heal so it wouldn't give false positives on the PET. At that point, they were going to contact the hospital the did Don's lypmhectomy to get a sample to test for BRAF.

We waited the additional time (3 weeks between scans) and had his PET redone on th 29th. Dr. I had told us that if further hot spots turned up on the new PET, he would need CT and/or MRI to confirm. So, not wanting to wait a week until the 6th to get our answers, I called Dr. I that Monday afternoon. I wanted to know whether he was going to need the additional scans, because we didn't want to wait until the 6th to find out and have to wait even LONGER for more tests. If he needed them, we wanted to get them scheduled right away. Dr. Ibrahim said that no further testing was needed at that time. This, of course, gave us the impression that the PET came back with good results.

Yet, when we got to the appointment on the 6th, she tells us that the cancer had spread to several areas away from the original site and he was going to need more tests (CT and MRI). This was the EXACT reason I had called her on Monday! I was bullshit! Granted, they got him in that same day to get both tests done, but we could have had these tests done and she could have had THOSE results that Friday as well, you know?

Then they tell me that the BRAF testing wasn't complete yet because our hospital hadn't yet sent the specimen. I was on the phone with the doctor that Monday...why the heck didn't she mention it then when I could have taken care of it? Or called after the first week and they hadn't got it sent yet for that matter? I literally got on the phone with the lab at the hospital while we were IN HER WAITING ROOM and arranged to have the specimen overnighted to DF. 

Dr. Ibrahim said she was surprised at the amount of change in Don's results in only 3 weeks (new scan showed bone lesions scattered on both hips, left leg bone, left arm bone, one left rib and both bones in the sternum, as well as tumors in both liver lobes), yet when I asked her if it was unusual she said no. I don't feel like we are getting straight answers from her. This is one area where I'm hoping some of you could give me feedback. That amount of change seemed to confirm the Dr's thought that this mel could be an aggressive one. Yet, I'm not seeing any sense of urgency in dealing with Don's case.

I called Dr. I's line on Monday, because I wanted the results of the MRI/CT scans. Her fellow called back and said they don't like to give out results over the phone because they'd prefer to do it in person in case it's bad news. I told him I didn't care if it was bad news so much as it would affect course of treatment right away: reason being that if he had brain mets, he wouldn't qualify for the trials and they could just start Yervoy right away. Reluctantly, he told me that the MRI was clean. I asked him if the tissue had arrived from our old hospital. He said he wasn't sure. I asked him to call me right away if it wasn't there yet, because it had been promised to arrive on Saturday.

I was told that I would get a call from radiology on Monday for Don to be scheduled for a liver biopsy to confirm the Stage IV diagnosis. No one called, so I had to call Monday afternoon to follow up (their biopsy procedures appear to be done at Brigham and Women's Hospital next door) and get it scheduled. That department hadn't even gotten the paperwork from the doctors for the procedure yet, which was why they hadn't called. I got him in for Wednesday (2 days ago). 

When we got there for the biopsy, we were told they were taking several samples, one of which was to test for the BRAF mutation. Is it standard that they would test every tumor for the same mutation? Or is something fishy here? I mean, if the tissue sample they received was not viable for the test, I would have liked to have been informed of that, yet, they told us nothing.

Now, of course, I would like to be informed of the test results as soon as they get them, but that appears to not be this doctor's policy. Don's next appointment is the 20th, which is 3 weeks from the date of his last PET scan. If his mel spread as much as it did in the prior 3 weeks, I can only imagine what is happening in this additional 3 weeks. (It would not at all surprise me to learn that the cancer has spread to his lungs, for example) But I still don't feel as if there is any sense of urgency attached to his case. 

I placed a call to the call line yesterday morning and asked to be called back because I had questions: we wanted to know why they needed the additional BRAF test done as well as find out how soon Don might be able to start treatment after his appointment on the 20th. It will be 7 weeks since the surgery by that time...7 weeks of absolutely no treatment with the melanoma running wild in Don's system.

When I didn't get a call back by 3:30pm, I called again. The nurse taking the message said she'd try to get someone to call back that day, but usually calls that came in that late wouldn't be answered until the next day.

Am I being unreasonable to expect to hear results as soon as the are available so they can be acted upon more swiftly? I don't feel like Don and I are being treated as partners in his health plans. I wish that they could have given him advice on excercise and diet and anything at all that he could be doing in the interim to try to get his body's immune system to try to fight off the cancer better while we were waiting for treatment. I realize Don is not their only patient, but I am not okay with the apparent lack of urgency.

Please let me know if you think I have unreasonable expectations and if not, can anyone give me feedback on Dr. Hodi from DF? I know at least a couple of boardies have him as their doctor, and I'd like to know if his approach would more mesh with ours. Thanks!

Michelle, wife of Don, Stage IV

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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Carol Taylor's picture
Replies 14
Last reply 5/17/2011 - 3:02am

Everyone, this is an SOS for Eric. Jill just posted on the facebook page she has about what's going on with him. It's not good. I'm not going into detail, but please trust me on this. They both need your support and prayers like never before.  Bombard the throne of heaven.

Lord, in Your mercy, be merciful now! Amen.

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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Leigh's picture
Replies 5
Last reply 5/13/2011 - 11:43am

Hi,

I was diagnosed in December last year at the beginning of a southern hemisphere summer.  A week before we had decided to move to Queensland - melanoma capital of the world.  We used to live there for a couple of years and have some (very) extended family there.  We were really looking forward to this move as it was hopefully going to bridge a gap between our families and my husband is extremely keen to move back to his homeland.  But after the diagnosis, a number of scares, and a summer spent avoiding the outside during the daytime, we decided we should not go.  We are now having second thoughts as we enter a cool winter and we were looking forward to finding some middle ground for us both in terms of where we live and of course they have a great (summery) lifestyle.  (I would actually be happy staying put but we are living in my hometown and although my husband says he is happy here I believe he hasn't settled and wants to move back).

I just dont know if this would be a completely ridiculous move.  On the one hand I think - are you crazy moving to melanoma central, on the other I think well at least I know I should protect myself and how to do this.  My kids are fair too.  Is it possible to live in a warmer climate with melanoma?  (especially with kids who are still only 3y and a baby and will obviously be running around and not willing to wear too much clothing).

I'm not sure if melanoma is caused by burns in childhood primarily or is it actually the amount of UV exposure that plays an important part (obviously I would be absolutely certain to avoid any burns in the girls).

Thanks for your thoughts if you have got this far, I'm not sure if this is a great place to write this but I cant think where else to get advice/opinions.

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dafad777's picture
Replies 3
Last reply 5/18/2011 - 1:16am
Replies by: betsy, Anonymous, washoegal

hi.had a question is malignant blue nevus the same as melanoma.my daughter had tumor removed six months ago.the other day she had thyroid ultrasound done and they decided to check her lymph nodes.the only information i got was small lymph nodes noted on report.I am guessing thats good because if they were inlarged i should be concerned?they so far have treated it the same as far as surgery and wle.thank you any information would be apprecated

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TracyLee's picture
Replies 5
Last reply 5/13/2011 - 6:26am

Second opinion consult on Tuesday in Philly at U of Penn.

Since seeing radiation oncologist on Friday, I've popped another node in my neck, right behind the still healing incision site from April 11th surgery.

Now being advised to:

NOT do radiation

NOT allow more surgery

Begin Ipi (Yervoy) every 3 weeks x 4 rounds, then possibly do radiation

Tons of appointments between now and next Wednesday. I do work 40 hours a week, in between appointments! (Blessed with a wonderful boss and co-workers, but the guilt.....ugh)

Mine is Stage III, bordering on IV - scalp & neck

Thoughts?!

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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petie540's picture
Replies 3
Last reply 5/12/2011 - 9:17pm
Replies by: petie540, Anonymous, KatyWI

Has anybody who has been diagnosed as stage 1V been treated only with temodar after the initial diagnosis was elevated to stage 1V?On8/10 after a 11B dx. on 3/09 with only observation I was started on temodar 140mg.for 42 day cycles and 14 days off. Now in cycle 5 and have been so far NED.Next cat/pet is in June then might go off all meds at that time .We will see then. Thanks.And by the way I want to thank the board for the kind responses to my previous post about waiting. That night I let my emotions get the best of me.

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Lisa13's picture
Replies 2
Last reply 5/12/2011 - 6:00pm
Replies by: Carol Taylor, ShariC

Met with my oncologist yesterday after being kicked off the ipi trial for suspicious activity in lungs. He said my CT scan showed 20 spots, but told me yesterday he feels there's only 2 that look suspicioius and may be melanoma.  That being said, we'll re-scan in 3 weeks to see if any of these spots have changed.  I can only hope that they have either disappeared or havn't changed in anyway.  Since I just had surgery and lymph node dissection 2.5 months ago, I really don't want to progress to Stage 4 so quickly cause that would say alot about my melanoma.

Anyway, if there is change, we're going with decarbazine. I've been pumping my body full of so many holistic supplements for the past 3 months, so I really hope my own immune system will remove whatever is in my lungs.  I hope like many of you, these spots won't change and I can go on feeling a bitt better about things until the next round of scans. 

Keeping the faith.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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JennerFromIowa's picture
Replies 4
Last reply 5/12/2011 - 8:54pm
Replies by: JennerFromIowa, Fen

Does anyone know of a melanoma walk/run in Iowa?  Have been trying to find one for quite awhile but no luck.  I would have thought Des Moines would have one but haven't found one there either.  Thanks!

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stanscott's picture
Replies 4
Last reply 5/12/2011 - 6:29pm

Just wanted to let everyone know my thoughts are with you. I have been off the page for quite a while. My health totally fell apart with a minor surgery on Oct 7, 08 leaving me bed ridden for a time, but things have improved and life is moving again. Just want to say I'm alive and say hi.

stan

Music is the river that navigates history.

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Anonymous's picture
Anonymous
Replies 12
Last reply 5/13/2011 - 8:30pm

All, this information is taken from Amy's Facebook page -  Please continue to keep her and her family in your prayers.

 

Sunday May 8 -

Update... Amy is still fighting everyday. She is in a lot of pain but with frequent med changes she is able to manage. She is trying to enjoy this time with her family and friends. She wanted me to express her deepest apologies for being so far behind on personal emails and msgs and promises to get back soon. Amy sends her love and thanks to all.

 

Wednesday May 11 -

Update-- Amy is still fighting her pain is very high, but the hospice nurses are working around the clock to keep her comfortable and to try to help her get some rest. Her blood pressure has been low and her pulse high. She is "keeping her spirits up" and keeping us on our toes. Thank you all for your prayers and suppourt. 

Update-- Amy is still fighting her pain is very high, but the hospice nurses are working around the clock to keep her comfortable and to try to help her get some rest. Her blood pressure has been low and her pulse high. She is "keeping her spirits up" and keeping us on our toes. Thank you all for your prayers and suppourt. 
 

 

 

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AZJulie85's picture
Replies 1
Last reply 5/11/2011 - 11:39pm
Replies by: lhaley

I am currently Stage 3b after having had two WLE and negative SNB's on the left leg and did one month of high dose interferon. Seems like every 5 years, melanoma reappears on my leg.  My derm just did a shave biopsy in the same area that came back as melanoma , but it is very thin (.2mm).  Will be seeing my oncologist and onc. surgeon next week, but am wondering if I should be expecting them to suggest a Wide Local Excision (WLE) and Sentinel Node Biopsy (SNB) again due to it being a recurrance, even though it is very thin?  The biopsy was a 5 x 4 x 1mm area, and the path report did say the melanoma extended to the edges of the specimen.   The derm scheduled an excision, but I thought I should probably get consult first from my previous surgeon - if he doesn't suggest a WLE should I insist on it?  Any thoughts on WLE and SNB would be appreciated. 

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boot2aboot's picture
Replies 8
Last reply 5/25/2011 - 4:17am
Replies by: Anonymous, ShariC, boot2aboot, RMcLegal, nicoli, FormerCaregiver

Anyone tried Bio-Chemo as adjuvent therapy and how did you do?

did you do radiation b4 or after this?

what were the pros and cons?

i am seriously thinking of going this route if my pet scan is clean...there are some questions concerning my spine and hip...

boots

don't back up, don't back down

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mommydog's picture
Replies 6
Last reply 5/21/2011 - 11:13am

We just returned from UCSF where my husband received the results from his first post treatment PET scan.  After 8 weeks of taking the trial drugs, my husband's tumors have shrunk 62%.  We were both stunned and thrilled, as was the doctor.  The tumor in his lung was gone completely.

For today, life is good.

 

Deborah

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sheri47's picture
Replies 1
Last reply 5/11/2011 - 9:45pm
Replies by: lhaley

little about my moms mm,  her first mm was in 1982 left heel they removed half her heel stage 1 level 5 no nodes,

then 2001 came back encased in a lymphnode in the belly was against the colon stage 4,

 2005 and 2009 back to the same foot , she always just did suregery to removed masses, no other treatment,

 ok now 2011 back to same foot , was wondering if radiation will kill the mass;s there are 3 now biggest 2 cm will kill them thank you sheri from ohio

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Vermont_Donna's picture
Replies 26
Last reply 5/15/2011 - 10:11am

Hi everyone,

I had my 12 week checkup including a PET/CT scan, labs and melanoma oncology checkup today. My PET/CT scan is completely clear of the hot spots from three months ago, except from where I have 11 month old poorly healing wider excision wounds on my lower calf. All other suspicious hot spots are now gone. My melanoma oncologist has declared me a complete responder to Ipi and I will NOT have further Ipi trreatments, unless I notice a re-occurence or it shows up on my next PET/CT scan, scheduled for 12 weeks from now. The clinical trial coordinator had thought a few weeks ago that I would receive another four infusions but now that Ipi is FDA approved the trial I was in is closed, so no more doses per the trial protocol. I am fine with this.

I am hoping that all others who are on Ipi have as complete as response as I have!

Vermont_Donna, stage 3a, NED x 3 months

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