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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1. Focus of hypermetabolic activity in the questionable focal skin
thickening in the region of the left armpit. Significance of this is
uncertain. Clinical correlation is recommended.
2. Focus of hypermetabolic activity in the focal skin thickening of
the left suprapubic region. Clinical correlation is recommended.
3. Focus of mild hyper embolic activity in the region of the right
anterior chest which probably represent normal physiologic activity.
Correlation with mammography is recommended.
4. Focus of hypermetabolic activity in the the inferior aspect of the
right calcaneus bone. There is spurring seen in this area on
corresponding CT exam. This may represent plantar fasciitis.

They forgot to send the head part, I get it today. all the Dr. said over the phone(" It's not as bad as I thought it would be") Told me that he would talk to me this afternoon, about when is the best time to get to Maryland, NCI, he doesn't want anyone  touching me here n Columbus, Ga. Can anyone get anything out of this? Just tired of this waiting game, it took 4 wks to get the CT/PET scan. And What should I do now?

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bluepeople's picture
Replies 7
Last reply 10/27/2010 - 3:28pm

 So my husband had a SNB more than a month ago, and it has become infected.  He had a fever all weekend and the area was really red.  He FINALLY went to a doctor today and they opened it up, cleaned it out, and now we have to "pack the wound" until it heals inside??  Luckily I'm not too squeamish with this kind of stuff, but hopefully they send good directions home with him.  He didn't even call to tell me he went in for surgery until after it was done!  Has anyone had to do this, and if so, do you have any tips?  I've read that it can be pretty painful. 

Thanks so much!


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MonicaD's picture
Replies 25
Last reply 8/30/2013 - 2:33pm

Hi there,

After my SNB came back positive, I had surgery to remove the rest of my inguinal/groin nodes last week (Oct 18th).  I'm really worried about the prospect of lymphedema now and would love to hear from other people who have had this surgery and what your experience has been and how you've dealt with it.  I was a very active person before and I plan to be again but worry how lymphedema is going to affect my ability to hike, bike, run, etc.  So far, I still have my drain in and it's removing a lot of fluid, which feels good so I plan on requesting to keep it in as long as they'll let me.  I'm still very much in the early phase of healing so when I'm sitting or lying down, I keep my leg elevated and also try to do some gentle massage on my leg.  Is there anything else I can be doing?  What can I expect later in terms of swelling and ability to be active? 

Thanks for any info you can give me!

Monica :)

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lhaley's picture
Replies 4
Last reply 10/27/2010 - 12:53pm

A little more than a week ago I had a lump in my arm and a node in my chest wall (under the collar bone) removed.  Friday a new lump appeared - on my butt! My appointment was supposed to be this coming Thursday but they had me come in early.  I am very impressed with my Doctors at Charlotte's response time. Phone call to Dr. White's office at 11am on Friday, he was in surgery so they had me go to my local oncologist who fit me in right away. When they weren't sure what this was I was given an appointment Monday. Could not have asked for a better response time!  Once there they pulled in Dr. Amin and the two spoke to me together. Now I don't have to take the drive on Thursday!! 

I've been put on an antibiotic and they believe that it's an infection. This has never happened before so we will see.  If it doesn't shrink in a week I'm to go back and they will do a fna, but they said it is not presenting like melanoma. None of my melanoma's have presented normally so I hope!!

Ends up that the lump on my arm was not a subq but a lymph node. By the time of surgery it was 2.9cm. He took extra nodes and all others were clear and clean margins were gotten!!!   The node under the collarbone was only 1 cm. Other nodes were clear and clean margins!!   Knowing that the 2 spots were indeed melanoma I had the best report I could have asked for.

Scans will Dec 2nd. If all is still clear then I'm back on watch and wait!  Meanwhile they are testing the tumors for b-raf. 

Stage IV for 4.5 years now and going for way more!!


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ValJaneMB's picture
Replies 5
Last reply 10/27/2010 - 9:03am

Hi Everyone,

After receiving so many wonderful responses to my first posting, I thought I'd ask for suggestings regarding what I think is vital to anyone fighting disease - SLEEP!!

I know I haven't had a full night's sleep in years - at this time I am taking zoplicone (I  think my body has built up a resistance to it and it's stopped working) and  I also take 1/2 tablet of melatonin about 2 hours before bed.  I work full days, try to excersise, follow all the rules.

We hear so much about how important it is to get at least 7 or 8 hours of sleep each night.  Right!  I don't know how menopausal women manage.  Stress probably plays a big part in this too.

Any ideas or suggestions? 

Thanks in advance.


I am off to work soon so probably won't respond to any posts until this evening.

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tricialeigh44's picture
Replies 7
Last reply 10/26/2010 - 10:01pm

Just want to ask everyone on this site to wish my new friend Kevin good luck on his CT results. As you may know he is getting his results on the 27th.

May IL2 be his miracle!!!!


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ChristineL's picture
Replies 15
Last reply 11/9/2011 - 4:49pm

Anyone have experience with peg interferon?  For me at stage IIIB it's one of two options since I don't qualify for any trials (it's either that or regular interferon).  I'm extremely hesitant to do Interferon for a lot of reasons, and supposedly peg interferon has fewer side effects, although it's a 5 year regimen (instead of the 1 year).  I'd love to hear thoughts on this!

Thanks a ton,


Fight like hell

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jim Breitfeller's picture
Replies 2
Last reply 10/25/2010 - 1:29pm
Replies by: bill58, Sharyn

This is a very good presentation from Dr. John M. Kirkwood for patients and care givers. Dated September 2010 held in Cleveland

Dr. Kirkwood give his honest opinion on the clinical trails to date and where they are heading in the future.


Please take an hour out of you day to view and listen, It may save you or your love one from doing the wrong therapy.

Best regards

Jimmy B

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bonnieb's picture
Replies 2
Last reply 10/24/2010 - 11:30pm
Replies by: Janner, Anonymous

But it just occured to me today that if only 7% of people have a second primary then why do we avoid the sun after diagnosis with the first?

Not that I am looking for an excuse to go tanning or anything but my Doctor seems so vague about everything and I just wondered about it. Does exposure to the sun increase the chance of melanoma returning?


BonnieB (diagnosed stage 1 Nov 09)

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ValinMtl's picture
Replies 11
Last reply 10/29/2010 - 6:05pm

Just to say that I attended the above last Friday and am so glad that I did.  I developed a huge respect for the doctors/researchers at Mass General..exciting news insofar as possibility of combining treatments such as B-RAF and ipi..coming up the pipeline. I also thoroughly enjoyed meeting up with some of my colleagues on the Bulletin Board...Tim/Shelby from MRF, Jerry from Cape Cod and Farm Girl.  Just wish it had been a two-day conference.  Keep on cycling Jerry..hope to get back to that myself next good for the soul and health. I'm still chuckling about the comment from the 12-year old. Val xx

Live Laugh Love Nothing is worth more than this day!

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Anonymous's picture
Replies 2
Last reply 10/25/2010 - 8:51pm
Replies by: lhaley, Sharyn


As luck would have it, I had full head to toe PET/CT scans in 9/10 to get into a trial but I did not have a 1cm tumor. I had 2 tumors 6mm & 4mm on thigh

Now, I have another recurrence on my thigh that is growing very fast.

I really do not want to have scans again  until I am ready to qualify for a trial and the scans are part of the trial requirement.

Question: Has anyone had their tumors measured by other macines besides CT like ultrasound or anything else that can measure the size of the tumor? Are these machine reliable/definitive??

If I can just determine when my tumor is 1 CM then I can contact trials I might qualify for!! I do not want to sign up for a trial assuming that my tumors are 1cm then go through the scans & not qualify because the scans come back with less than 1 CM tumors.

Thanks for taking the time to repsond to my post. Wishing everyone a NED status.

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fliberdy's picture
Replies 11
Last reply 10/29/2010 - 10:22pm

Can anyone tell me if the sentinel node biopsy is very painful? 

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fliberdy's picture
Replies 8
Last reply 10/24/2010 - 3:37pm
Replies by: fliberdy, Anonymous, Sharyn, teenagermom

I can not sleep and just discovered this site. I'm hoping to find some answers and encouragement here. I guess I don't really have a stage yet  The Dr thought  I was stage 1 but now they want to take more and do a sentinel node biopsy because the labs came back after surgery with rogue cells? Dr said my case is very odd, he has never seen this before. I am floundering here, anyone hear of something like this?

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Emerging concepts in biomarker discovery; The US-Japan workshop on immunological molecular markers in oncology

Howard Streicher (CTEP, Bethesda, MD, USA) presented an overview of biomarkers useful for patient selection, eligibility, stratification and immune monitoring. CTEP sponsors more than 150 protocols each year across many types of new agents, so that this program is familiar with the need to prioritize trials selection using biomarkers. Biomarkers are important for 1) patient selection and stratification for the best therapy; 2) identification of the most suitable targets of therapy; 3) measurement of treatment effect; 4) identification of mechanisms of drug action; 5) measurement of disease status or disease burden and; 6) identification of surrogate early markers of long-term treatment benefit [1].

Examples of biomarkers predictive of immunotherapy efficacy (predictive classifiers) [4-7] are telomere length of adoptively transferred tumor infiltrating lymphocytes which is significantly correlated with likelihood of clinical response [8], serum levels of vascular endothelial growth factor (VEGF), which are negatively associated with response of patients with melanoma to high dose interleukin (IL)-2 administration [9] or K-ras mutations that predict ineffectiveness of cetuximab for the treatment of colorectal cancer [10]. Recently, the European Organization for Research and Treatment of Cancer (EORTC) reported a signature derived from pre-treatment tumor profiling that is predictive of clinical response to GSK/MAGE-A3 immunotherapy of melanoma. The signature includes the expression of CCL5/RANTES, CCL11/Eotaxin, interferon (IFN)-γ, ICOS and CD20 [11,12].


Take care


Jimmy B

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Has anyone heard how Jenna's doing. Lauren has not posted for awhile & I am worried. Thanks

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