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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natasha's picture
Replies 19
Last reply 2/26/2012 - 2:10am

Hi!  Could you ,please ,recommend food suppliments .It should be something what can help to boost our immune system.

All I bought is Garlic tablets and Vitabiotics Immunace Antioxidants with vit A D E K C zinc copper niacin selenium.

Could you recommend something helpful ,please???

Thank you very much

Natasha

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arnat's picture
Replies 5
Last reply 2/19/2012 - 6:45pm

My 89 yr. old mother was recently diagnosed with stage III melanoma.  She is due to have a tumor removed on her leg (calf), the lymph node in the groin removed and a skin graft for the calf area.  She will have a wound vac.  My mom lives with me and I am her primary caregiver.  She has dementia which complicates things.   I am having a very difficult time dealing with her going to a nursing facillity after the surgery.  I am afraid that she will be over-medicated and never come home.  Is this post- surgery wound care something I would be able to take care of at home?  Her medicare would send a nurse to the house.  Or would she be better off in a skilled nursing facility? 

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NYKaren's picture
Replies 7
Last reply 2/19/2012 - 8:16pm

 

I just got home from seeing Dr. Wolchok at Sloan.  As I've mentioned, while awaiting an Anti PD-1 trial, I've been getting my spreading mets frozen and applying Aldera.  the entire side of my face from my scalp onto my neck, where the mets are, is a red, swollen mess, but the treatment seems to be keeping the mets in check.  Obviously, the derm (Dr. Halpern) cannot keep chasing the mets as they spread, but they're pleased at the stop-gap measures.  There's a lot of pain involved, and I'm taking 10 mg. of Oxy on the days I use Aldera (about 2 doses/day.)  

In the past 16 months, I've had WLE and negative SNB, 3 months later, recurrence w/met. satellites, putting me at Stage IIIc, radition, which stopped the spread for 1-2 months, then I was one of the first "commercial" users of Ipi (Yervoy) after its FDA approval.  I was a partial responder, then stopped responding.  Then 2 rounds (4 weeks total) of IL-2; i responded at first, which, in retrospect, I believe was due to the Ipi, then I did not.  I am not a cry-baby; I took all the IL-2 bags and they were all quite impressed.  But the pain from this Aldera/freezing is knocking me on my butt!

So the next step was supposed to be an anti pd-1 trial.  Curetech rejected me because I'm not Stage IV. I am Stage IIIc unresectable.  As we know, maybe that rejection was a good thing.  So, NOW, Dr. W's planning on Ipi reinduction (starting the approval process tomorrow.)  

If I do not respond to Ipi, ta da, here's the news:  BMS has changed its _____(i forgot the word he used) and in ABOUT 2 months, he expects BMS's PD-1-only, without prior Ipi exclusions, trial to open.  He had no news about Merck, except they're going through issues (not medical, more like funding, internal stuff, etc.)   I asked him which drug is better, and he said he thinks they are both good and has heard positive results from both.  Regarding prior ipi use for BMS, there will be a narrow window, so he thinks our timing might be good.  I don't really know what that window will be, but we need to all stay tuned. 

LSorry this is so long; I hope it can be of some help to us.

All the best,

karen

Don't Stop Believing

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bdhf's picture
Replies 11
Last reply 2/22/2012 - 9:03pm

Would love some advice!!!  After having the 3 cm tumor removed from my brain in December, whole brain radiation just completed due to a new 4mm brain tumor, my docs are pushing for resection of a lung nodule that was found in December when all this started and hasn't grown at all.  I have had 2 bronchoscopies that say that there are no abnormal cells but the nodule is so deep in the lung the docs say they can't be 100% they got to it during the procedures.  I really do not want a resection.  The nodule didn't show on the PET scans, just CTs.  I feel in my heart of hearts (for whatever that is worth) that it is not another tumor, especially since it has grown at all in 2 months.  

What would you do?  

Thanks!  

Brenda

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himynameiskevin's picture
Replies 10
Last reply 2/18/2012 - 4:44pm

Well I had a CTscan of my chest/abdomen a couple hours ago to see if I am hopefully a late responder to the Yervoy I finished on Dec 20th. Maybe hear word tomorrow or Monday. Not sure if this is still too early to tell, but it'll give some comparison to what was shown on the scan from Jan 9th. I've heard about it possibly taking up to 5 months to show results, not sure if from first dose or last dose, but probably varies from person to person. Physically I feel pretty good, no pains or anything abnormal, my 4-month itchy-throat cough has subsided and my slight sensation of paralysis in my left hand is pretty much gone too.  Hopefully a good sign the SRS was effective. Mentally though, this last week has been the hardest since all this started. Although unlikely it will happen again with the SRS and temporary medication, the second seizure, as mild as it was, has made me a little paranoid, a bit worried or concerned, thinking "but what if it does happen again?" "what if I'm alone?"  I'm sure these feelings are natural and will pass with time, peaks and valleys have always been a part of the territory dealing with this, I remind myself I’ve been through valleys before, and I made it though, and then enjoyed the peaks. I've had so many wonderful times during the course of all this. I'm sure most of this unsettling feeling is just from this “temporary state of uncertainty”, this waiting time where everything is in the air between scans and growth and treatment options.

At least there’s that word “temporary”. Implying that things can always get better, no matter how unlikely, as they have before. In the most perfect, replayed, manifested, thought about, prayed for, miracle of a story imaginable… my scans today would show that I am indeed a late responder, the tumors in my lungs are shrinking and therefore the ones in my brain may be too. They start me on another follow up round of Yervoy or maybe finish up with another something at the NIH. And things continue to shrink and disappear indefinitely. Oh how I wish that… not just for me, but for Brenda, my family and friends, doctors, nurses, and any people who have supported, encouraged, and helped me through these times. I want to make you proud.

Thanks for reading.

Staying focused and optimistic,
-Kevin

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Replies by: Swanee, gtown, Janner

I haven't been on this site in about 9 years - I'm just over 10 years NED after a stage 1B melanoma on my ear.  Recently a friend of mine was diagnosed, but I thought it was odd that the Dr. told him he has metastatic melanoma, but the only thing they have done so far is an excision and biopsy.  It is 3mm, but without seeing the lymph notes or doing scans, how could you diagnose this as metastatic?  Am I missing something?

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chermes55's picture
Replies 1
Last reply 2/17/2012 - 3:07am
Replies by: FormerCaregiver

Reached day 21 in my new trial. other than a slight non-bothersome rash between my shoulders i havent really had any side effects. This week i have returned to work and trying to resume life as usual. i have had some slight fatigue but not sure if it is actually related to the trial or the fact that i have been pushing myself harder than i have in the last year. Looking forward to my 2 mo. scan at the end of march to see if this thing is working. I know that i will never completely regain a completely normal life, but at least i can have the chance at the illusion of one. Since the interferon ended my appetite has went thru the roof and i have gained 15lbs since december. My mental state has had its ups and downs in the last year mainly because of the interferon/lexapro combo and lately just do to having lots on my mind. I am on a mission to keep my head up believe in my docs and this trial, its an uphill battle but im never going to give up.  

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Shawna1972's picture
Replies 13
Last reply 2/17/2012 - 10:22am

Wow, what a last few weeks I have had.  I would appreciate any feedback or answers that you can provide.

I went to the dermatologist a few weeks ago to have, what I thought, a mole removed for cosmetic reasons - as it was on my face.  Had it for about a year.  Dermatologist said 'I'm not so sure that's a mole, I suspect that possibly could be basal cell - but we'll send it to the lab to see'.  I was less nervous about basal cell, I thought ok, if it's basal cell - she just took it out.

Two weeks later, I got the call to come in and discuss.  Derm advised lab had a hard time figuring out what to call it.  From what I gather, the punch biopsy showed 'potential' for malignant melanoma.  The margins were not clear, so I know there will be another excision. Do I expect bloodwork, xrays, scans? Also, the report advises a low mitotic rate of less than 1%, hopefully that's a good thing?  Two Dr.'s were consulted by lab, one had the conservative approach opinion of another excision and watch - the other more radical, involving lymph nodes.

I contacted my primary care Dr. who has referred me to a hematologist/oncologist for an initial consultation next week.  Any advice on what to expect at an initial consultation? Also, would an elevated blood calcium level that was found last fall, have anything to do with this?

The research on the internet is freaking me out.  At this point, I have no stage, no real concrete of a diagnosis for melanoma - just 'potential'.

Any help or insight would be greatly appreciated!

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CMH's picture
Replies 1
Last reply 2/16/2012 - 12:33pm
Replies by: Janner

I had a basal removed soon after my melanoma surgery (November 2011, 1B.)  The basal was about 6 inches from my melanoma.  The melanoma scar never bothers me, but the basal scar hurts  - kind of a burning, itchy sensation.  It's very dark pink but seems to change shades of pink, like a mood ring.  There's a bump underneath the scar (which started out smooth.) At my three month check, my dermatologist didn't comment on it.  I wish I had mentioned the discomfort, but I was preoccupied by a lesion on my hand (turned out to be a wart!!)  Anyone have trouble with basal scars?

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natasha's picture
Replies 2
Last reply 2/17/2012 - 5:57am
Replies by: natasha, washoegal

Hi ! Is it a lot of people from UK?

Hospitals you can recommend ? I am in Adenbrooks Cambridge ,but seems like things are going so slowly ,it takes month between my primary surgery and wide excition / SNB. Still waiting. Looks like our friends from USA are in better hands regarding hospitals and treatment.

And another question - could you recommend some food suppliments we can buy here in UK?

Thank you and God bless you.

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Replies by: Anonymous, boot2aboot, LynnLuc, MeNDave, deardad

The oncologist told us today that my husband's latest PET/CT disclosed a couple of new mets and some growth in pre-exisiting mets.  This means that the drugs are no longer working for him and we are on to plan B, which we need to decide upon very soon.  The two options the doctor presented were:

 

1. enrollment in a phase two clinical trial by MERCK on PD-1 or:

2. treatment with Yervoy and the Roche BRAF inhibitor as a combination therapy.

 

The doctor said if it were him, he would do the trial.

 

Does anyone have any informtion on the PD-1 trials?

 

Thanks

Deborah

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yoopergirl's picture
Replies 7
Last reply 2/16/2012 - 12:01pm

The more I read on this board the more I realize that I am not informed on my cancer status. Was told in December I am stage 4 with the melanoma spread in my lungs from my primary in my left finger(2006) a reaccurnace in Dec 2010 to the forearm and lymph nodes.

What I am asking for is some questions that I should be asking the oncologist on Monday, I see him before I have my third yervoy infusion.

I do know that I am Braf negative (whatever that means) don't know much else. I am being seen at the Marshfield clinic in Wisconsin. I am actually his first patient for the Yervoy. I have gotten 3 opinions already and they all said to go with the Yervoy since interferon was too hard on me last year, did the month infusion but it made me so sick had to stop the shots at home.

As far as the Yervoy I am tolerating it well, my labs are all good but am having alot of the itching. You all are such fighters here and I intend to be too so am thanking anyone who could help me out here....yoopergirl

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lhaley's picture
Replies 23
Last reply 2/22/2012 - 9:09pm

Went today to get my stitches out from the crainectomy along with the pathology and suggestions.

Found out that the pathology said that the tumor was already 70% gone before the surgery!!!!  The issue was all edema.  While originally it was to be more radiation ect they have decided that the tumor bed is gone.  They have started weaning the steroids tonight and am now at 3mgs. Will take about 3 weeks with hopefully no issues.

My body is destroyed and will take quite a while to get back strength. I have both an occupational therapist and a physical therapist. I know it will take time but how excited I am with their news!   My next appointment with the nuerosurgeon in 3 weeks, as of today he felt that I had no nuerological damage.  Last Pet was Jan 3rd and at that time was NED. 

The next few weeks I will be working so hard to get my strength back.

I think we flew home from Charlotte instead of the car driving.  Dance with us tonight.

Linda

Originally stage 1A in 1979

Stage IV 2006 - 7 recurrances

Brain Met - Oct 2011 been dealing with steroids since then

Now Feb 15th  NED!!!!

There is hope

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Karin L's picture
Replies 7
Last reply 2/17/2012 - 4:27pm

My onc. requested I see a neurologist for relief or treatment of my neuropothy in my hands and feet.  It has gotten worse since the onset about a month ago.  My appt. was today. 
She has me going in for a battery of tests.  Is this really necessary?  She has me completed freaked out in the meantime (told me not to worry, ha!).  MRI of the brain (just done in Nov.), MRI of the spine, and MRI of thora...(not sure what that was/is).  Bloodwork (I get that), a nerve conducting test. 

I also get ruling things out from the Dr's point of view, but I am anxious to say the least.  I requested an open MRI and the answer was ABSOLUTELY no.  She said the pictures aren't good enough.  Really? 

I am 8mos. out from IL 2 treatment and was under the impression neuropathy was fairly common.  My onc. was sure it was not the cancer but a side affect from treatment.  The neurologist kept hinting at the melanoma possibly in the spine, brain, nerves, etc.  I have been responding to the IL2 treatment since week 1 in the hospital.  Last scans in Dec. show continued improvement.  Many tumors disappeared, others shrunk by 80% or more.  Bloodwork last week excellent.  Could there be issues in the brain (MRI clean in Nov. when they checked for rining in the ears), or spine that are not responding? 

She said there was very subtle differences between my right and left legs.  For those with neuropathy, did your muscles also feel weak? Or heavy at times? 

So frustrated, thoughts?

Karin

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Kelly7's picture
Replies 4
Last reply 3/12/2012 - 3:46pm

I have a question about the whole IL2 process. Is the best case scenario is that the tumors shrink, or is there a possibility of them disappearing? And if there is  positive results after the 1 week on, 1 week off, 1 week on, what is the next step? Another week on, week off, week on? What is the spacing between treatments? How many do you do? 

The week between treatments, should all the weight come off? Should the patient feel back to "normal" the first day they go back to the hospital for the 2nd phase? Does the first amount of bags allowed correlate to the second amount allowed?

Those of you that did this treatment, do you feel eating a banana a day helped? What about walking each day?

IS there anything my brother should be doing this week besides resting?

 

Thank you for any information you can give me!!

 

 

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