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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Is it common to run a low-grade fever with Melanoma?  Thank you.

Take Care,

Sherron, wife to Jim

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Linda/Kentucky's picture
Replies 14
Last reply 9/30/2010 - 11:21pm

Does anybody know after going through the Ipi trial what treatments you are excluded from?  Just wondering~~~

 

Linda/Kentucky

 

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/30/2010 - 7:35pm
Replies by: lhaley, Anonymous, ktkee, Fen

Some of you may have seen me post before about a lump in my mouth.The dentist found nothing to explain it, or the symptoms. (Dry down the side of my throat is one of them.) Today the Doctor ordered a rush ultrasound, (wrote tumour on the request form - so certain of himself the bugger)  I tried to get him to reassure me,  (he is a nice man, really!) but when I asked if it could still be something non cancerous he would only say I was to come in anytime the day after the ultrasound.  And he put me off work. I still had my composure at this point, after all, it could be nothing ( I read about zebras here all the time). But the hospital called a short while ago, it seems the radiologist upgraded me to a soft palate CT tomorrow. Needless to say I have the jitters- at least I don't have long to wait to find out what's going on.

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Sherron's picture
Replies 3
Last reply 9/28/2010 - 7:09pm
Replies by: Janner, Sherron, KatyWI

Since his (July 2006) original Melanoma started as Nodular Melanoma on the lower right scalp, local recurrence 2 years later, then waited 1 year got it removed in August 2009.  And at time, we knew it had spread to the cervical lymph node on the right.  Since that time the cervical lymph node has got very large, and everything remained the same.  Then the beginning of September (2010), all of a sudden we have  a lumps in right chest area, one lump on the right side of back.....then all of a sudden, lumps on the LEFT SIDE (lower side area)  , one on LEFT  SHOULDER, and 2 more on LEFT SIDE OF BACK.  NOW ANOTHER ONE, IN THE FRONT OF his ear , again (LEFT EAR )..Also another one on his neck (the LEFT SIDE).  He also has 2 lumps in his upper thigh area (small ones), can't remember which side.  Hard to keep up with them, because they were coming so fast  .  Are all these lymph node or tumors, or somse of both.  MY question is did this spread through the cervical lymph node on the right side, or from the blood stream.  Since we have had no WLE, no SNB, no anything, is it likely that the Melanoma is already involved in the organs, possibly.?  I am trying to prepare myself for what is to come.   I am just trying to understand how it spreads.  I thought it mostly stayed on the same side.\This has been really scary since all this has happened within a 3 week span....Now, things appear to have settled down.

Thank you for your responses.

Take Care,

Sherron, wife to Jim

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mifis's picture
Replies 5
Last reply 10/2/2010 - 10:27am

Hi there,

Some of you might remember me. I had a mole removed from my left upper arm in May of this year which was diagnosed as melnaoma in situ and went and had it further excised in June 2010. I had  a Wbig conversation with the plastic surgeon where I asked him to feel free to take more rather than less to get it all. he said it wasn't necessary and would only nee to take a small amount, that you wouldn't want to take too much unnecessarily. When the patho results came back, the plastic surgeon said that was all that was needed but when I insisted I get a copy of my pathology report it said there were still atypical melanocytes at the margins and the pathologist recommended a further excision. I insisted on the further excsion, which happened in August, with the plastic surgeon telling me it was unnecessary, we would get the same result because of my sun-damaged skin etc. Well, what do you know, but it came back again with atypical melanocytes on the margin and the pathologist recommending a punch biopsy an inch or so away from the site. The idea behind this would be that if the sample still came back as atypical we could all assume that it really did mean my skin was just damaged all over. Anyway, the plastic surgeon and the dermatologist both said to stop worrying and that nothing more should be done.

I spoke to my primary care physician and said I would like a second opinion, what did she think and she was concerned abut how the patho report was worded , but wasn't sure where to send me for a second opinion, so I came on here and had some helpful responses. I deceided to seek a 2nd opinion at Sloan Kettering in NYC and have to say, I am amazed at how efficient they are. I wait days and sometimes weeks to hear back from my primary and months for an appointment with the doctor up here in Central New York. I had an appointment within 10 days and had to arrange to get my slides sent from Cleveland Skin Pathology Lab to SKCC. Well, it took Cleveland SPL 6 days to even get my slides into the mail so when I saw the doctor in NYC she hadn't heard back from the SKCC pathologist yet, but she commented that my excision scar was small and she would have taken more. We looked at the original Patho report from Cleveland and she said she wasn't really sure what they meant but she wanted to find out the degree of atypia and if it was severe she would recommend a further re-excision. She called me a couple of days later to say that the pathologist actually says it is still melanoma in situ on the margins. Now, I know melanoma in situ is very treatable, but it feels pretty odd to have been told it's definitely all gone, and now have somone else look at the slides and say it is still there. So, I have had 3 excisions so far and now about to undergo a 4th and am hoping they manage to get it all this time.

Has anyone else had experience with such varied diagnoses? Of course, I am finding a new surgeon to do the next excision and will insist on having the slides read at SKCC as well as somewhere else (not Cleveland).

Also, does anyone have any advise for me?

Thanks, Jennifer

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jwb355's picture
Replies 5
Last reply 9/28/2010 - 10:07pm
Replies by: ValinMtl, triciad, KatyWI, King, joy_

I have been diagnosed with mel. clarks level 4 had surgery on my arm and all lymphnods removed under right arm. Now the oncologist is saying that I need to do a month of interferon but it is my choice. I would like to hear from anyone that is going thru this or been thru it. I just don't know what I will do but need some info before I go any further. Having a PET scan next month and possibly radiation.

Jerry in Ga.

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Anonymous's picture
Replies 2
Last reply 10/2/2010 - 9:44am
Replies by: skysar, Jim in Denver

 recommendations appreciated

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beatricefromPARIS's picture
Replies 3
Last reply 9/30/2010 - 8:06pm

Scans from head to belly show no change or perhaps minor tumor decrease after 6 months interferon at dose of 10 M shot, 3 times a week.

Brain stays clear (in real and metaphorically!)

BeatricefromParis

Mets lungs, liver, bones, heart

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/28/2010 - 7:23pm
Replies by: killmel

Hi Bob,

 

I saw you post regarding you sayiing:  "Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors."

I am interested in knowing more about the VEGF clinical trial. Would you know the gov clinical trial number for this VEGF trial or any information/link where I can read about this trial.

You mentioned that if this trial failed then you would do IPI.

I am just curious why your doctor just does not put you on IPI???

There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

What does your doctor say about IPI???

Thanks for replying

 

Good Luck

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Anonymous's picture
Anonymous
Replies 20
Last reply 1/23/2011 - 2:30pm

Hi IPI Warrior

 

I read MPIP posts & some IPI warriors have remain stable & unfortuanately some have progressed. Cannot find any post from IPI warriors in REMISSION and NED?????

IPI has got alot of press at ASCO & in the news getting approved by FDA. I read 1 in 3 respond BUT is the response "remission"???

This might be a stupid question but how good is this drug??? Has any reports indicated this drug has brought IPI users into remission??? or has this drug just prolonged progression??? What exactly does "RESPONSE" to this drug mean to the IPI warrior

It wouuld be interesting if IPI warriors posted their disease status since taking IPI.  I wonder the results of IPI users who have finished treatment. Just a thought?? It would be encouraging for IPI users to see some IPI warriors that are NED after taking IPI.

Hope we see  many posts from IPI warriors that are NED!

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skysar's picture
Replies 5
Last reply 9/28/2010 - 3:12pm
Replies by: ipi in DC, ValinMtl, lhaley, Jim in Denver, Anonymous

I haven't posted in a couple of weeks due to an acute bronchitis infection which flared up while I was at MDA the day after my first treatment.  Ended up in the ER on Sunday and was given fluids and 750 mg of Levaquin.  Developed a rash a couple of days into the antibiotic so we are not sure if it is from IPI or  the Levaquin.  My ENT switched meds to Doxycycline and my rash has progressed.  So for the last 2 weeks I have been very uncomfortable and my next treatment is Wednesday!!!

MDA did give me an antihistamine, which didn't do anything.  I have been taking oatmeal baths, using Sarna lotion, Benadryl, etc.  Today I am trying Doxepin, which MDA suggested.  I have been reading all the posts regarding IPI and the side effects have been mild.  I am hoping this rash is due to the antibiotic, which has happened to me in the past with a different antibiotic and not IPI.

My neutrophils did drop but not enough to not take the Temador.  Yeah!!!

 

Sue

Hotlanta

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 Read this(caution not a good read if you are feeling at all nauseas)

 http://news.yahoo.com/s/ap/20100927/ap_on_he_me/us_med_costly_cancer_drugs

Insert Generic Inspirational Motto Here

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jtheisen29's picture
Replies 6
Last reply 10/18/2010 - 5:27pm
Replies by: Anonymous, Marshipops, stillhopeful, Phil S, jtheisen29, Tim--MRF

Hi all!

I am new to the board but find it to be a great asset and so many people who are supportive. I myself do not have melanoma but my twin sister was diagnosed with stage 3b Sept of 09 while 5months pregnant. Fast forward a year and she has a beautiful healthy baby boy (and 6 year old) and currently N.E.D with 51 more shots of interferon left. I am confused by the IPI trial and have gone onto clinicaltrials.org and read the trial descriptions but honestly it is like a different lanuage to me:) I see many posting who are stage 3 considering the trial. My question is what are the qualifications for a stage 3 to partake in the trial. My sisters melanoma was surgically resected, and was only offered interferon or watch and wait. Right now there is no evidence of diesease and we are praying that it continues. After everything that I have read about interferon I am interested if there is anything else that she could enroll in to raise her chance of no recurrance. Her tumor thickness was 3mm and ulcerated with microscopic involvment in 1 node. So I don't know if she would be unable to to do any other trials because there is no measurable diease. Any info that could be shared to help me understand this medical mumbo jumbo would be great!

 

Thanks,

Jessica Theisen http://www.caringbridge.org/visit/saramcevilly1

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glewis923's picture
Replies 4
Last reply 9/27/2010 - 2:12am

Dear Friends:    I went to MDAnderson and met with Dr. Hwu (the female one).  She was very nice and knowledgeable, but I'm still a little lost and confused:

1-  After 1 year of I-feron can I be eligible for IPI  OR B-Raf/PLX  IF my numerous lung nodules are "small"??  largest was 6mm?    ie.:  CAN I get ANY treatment without "histological Proof" that nodules are indeed m.mel.?     Dr. Hwu has said that until nodules/tumors grow to at least near 1cm. in size, an accurate biopsy/VATS/or even "open chest" surgery cannot be done......and NO treatment administered until this is done.

2-  She suggested that the nodules could be sarcoidosis.  Anyone else with 8 or more nodules- some growing- been "luckey" enough for this to be the case?

Thanks in advance for any suggestions or first hand simular experience.  I read y'alls' post every night and hope & pray for all.  This disease sure does suck and I realize I'm blessed to be here.....I just feel like i'm being told I've gotta wait till further progression before i can be treated.

Love, Hope, and Peace-

Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Hi everyone,

  My WLE of 6/1 remains unhealed and my oncology surgeon is talking with  plastic surgeon for a possible skin graft...not sure this is the answer as I am not sure anything will heal well in the area....seems like my leg is "trashed" after my ILP of one year ago. Meaning of course the heavy duty chemo treatmetn I got burned out small blood vessels and nerves so oxygenation and blood flow to the area may be constricted. I am thinking of seeing a homeopathic physician and am seeking a second opinion from a surgeon in my own area that I knwo well and who knows me, who did my SNB and first WLE 4 years ago. I have thought about the hyperbaric chamber treatment but havent asked. My oncology surgeon said he knows some folks doing seaweed applications but I wonder about that with me as I am allergic to iodine and betadine. I am also latex sensitive so many bandages also affect my skin negatively. Just wondering what other folks have tried when wounds dont heal or heal very slowly. If course to top it all I have a dark mole that just popped up right near the unhealed wound that has a little lump under it...more melanoma? I told the surgeon about it but as he and I both think I will be seen in one to two weeks he wasnt jumping up and down about getting me right in there......UGH!!!!!

Thanks for listening and if you have any ideas give me a shout. Thanks!!

Vermont _Donna stage 3a

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