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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annballard's picture
Replies 1
Last reply 10/29/2010 - 10:51pm
Replies by: lhaley

Hi Everyone, 

I've been reading over the amazing posts. What support! I had a stage 3a diagnosis last spring, with removal of the tumor on my calf and two sentinel nodes which showed a couple of micrometasteses. I declined a full lymph node dissection on my leg and the interferon. 

Does anyone else have a similar diagnosis? I have semi annual liver panels and annual chest x-rays and so far so good. 

Thanks! 

Ann

Everything is for the Good.

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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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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 year...so 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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Springbok's picture
Replies 7
Last reply 10/28/2010 - 7:26pm

I am still somewhat in shock.   About a month ago,  a bleeding "pimple " on my arm was diagnosed as mel, Breslau thickness 2.6 mm, making me Stage 2 , I guess

There I was thinking I was very healthy, at age 61, and still pretty active - skiing, gym, riding my bicycle to work, and an aspiring, but totally inept, surfer. Little did I know that the nasties were at work inside me.

This web site has been extremely helpful in understanding both the medical aspects of the desease and the frame of mind needed to beat it.

Two questions I would like to pose to the knowledgeable who frequent this blog:

1. An SLN biopsy operation has been scheduled for next week.  If it turns out positive for cancer (and I hope not), standard medical practice seems to indicate that the next step is to take out all the nodes in the area. However, at the same time, reading some recent papers, I detect that the doctors are having doubts whether removing the nodes, other than the sentinels, does much good.  In fact there is a big study underway comparing the life expectancies of those who do a lymph node disection with those who don't.    Any thoughts?

2. I have been reading Alexandr Solzhenetsyn's book - Cancer Ward.  Its a fine , even perhaps great, novel (he got the Nobel prize after all), and lays out the reality of cancer.  In the novel he describes the curative powers of what he calls Chaga or Shaga, which is a mushroom that grows on dead birch trees in Siberia. His own experience with cancer relates to his time in a prison camp in Siberia where he developed stomach cancer. He learnt about Shaga from some of the local hunters, who brewed up this tea made from mushrooms for all their ailments. Solzhenetsyn claims it cured his cancer.  I found the stuff in a local Russian store and have been diligently drinking 3 cups of tea a day made with it. It is quite pleasant tasting, and ,as I discovered , is extremely high, in anti -oxidants. My question is:  Do any of you  have experience with Chaga and its curative powers with respect to mel?

 

best wishes

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ValinMtl's picture
Replies 5
Last reply 10/28/2010 - 3:36pm

Flu shots are coming to town next Tuesday and all of a sudden I have this dilemna.  I'm on compassionate ipi, has anybody taking ipi be allowed to have a flu shot?  I'm going to try to get answer from the doctors in the next few days, otherwise, I think I'll have to pass on it.  Val

Live Laugh Love Nothing is worth more than this day!

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makedoandmend's picture
Replies 12
Last reply 10/28/2010 - 11:42am

For those that don't know I was diagnosed with an ulcerated malignant melanoma with a breslow depth of 9mm in early sept. It was nodular melanoma and there was a satellite lesion below/to the side.  The primary was removed during biopsy by the derm. Went to oncologist who schedule wle and snb.  Pet Scan came back with 4 small nodules on my lung. Those didn't light up but we are thinking they are from a nasty bout of pnemonia I had a year and a half ago.  The onc said it is more likely scar tissue than mel.  Nothing lit up anywhere, including the groin. I was really psyched about that because I thought for sure it travedled to the groin.    WLE excision went well, margins are clear. Just have a chunk of my calf missing, no big deal.  Skin graph taken from my other thigh so far so good.  They did a Sentinal Node Biopsy on my right groin.  Took ten nodes.  1 out of 10 were positive there was a mitotic rate of 4/mm2.  Not really sure what that means.  I now am scheduling another surgery on the groin and they are going to remove all of the remaining nodes.  So at this point I believe that I am stage IIIC but not sure.  My concern is that since the groin didn't light up on the PET, what else is there that didn't light up.  My surgeion mentioned Lymphedema and putting some drains in the groin.  I had one oncologist offer interferron or an adjuvant ipi trial 50/50 placebo.  I had a second opinion set up for Oct 21st  at sloan but have to push that back until after the surg.  I was just wondering if anyone can give me some insight on where I am and where I need to be.  I guess maybe it just depends on how many nodes come back positive after the full dissection.  I just feel like I am not being agressive enough.   I have been reading a lot about boosting the immune system and I am pretty excited about this since I would like  to give my immune system the best shot in this fight.  So besides exercising which I know is key are there any specific immune system diets or immune system supplement/vitamin regimens that people are doing?  Any imput on what I should be eating/taking would be appreciated.  Thakns to anyone who posts here. I love this board. I feel like its such a great weapon to have in this fight. 

 

pat on li

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Hello -

SNB in April, one positive node.  Underneath the scar from that node, I had recurrent cysts which were repeatedly drained and surgically removed twice. Now there is a new, hard (bone hard) lump in the same place.

I had an ultrasound yesterday and the report says "highly suggestive of malignancy", nothing else. I am having a PET scan tomorrow.

I saw my surgeon today and he suggested that I wait and see what the PET shows.  Obviously, he will remove it if it is clearly suspicious on the PET scan. However, he suggested that if my PET is clean that I just "keep an eye on it".  He said he would be willing to do a needle biopsy if I really want it, but he's pretty sure it's just scar tissue from the multiple surgeries.

What do you guys think? Is he right about it likely being scar tissue?  Would you take that chance?  Should I demand to have it removed if my PET is clear?  Maybe I should wait to post until I know for sure what the PET shows, but I'm really anxious about this and I am worried that my surgeon is not taking this as seriously as he maybe should (he's not a specialist).  Then again, it's easy to get paranoid about these things....

 

Thank you in advance for any advice, and thank you for being here to help... this site is an amazing resource.

 

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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!

Akilyn

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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!!

Linda

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dian in spokane's picture
Replies 1
Last reply 10/27/2010 - 11:56am
Replies by: Jim in Denver

Haven't seen a post from you in a while..just wondering how you are doing

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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.

ValJane

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!!!!

Tricia

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Carmon in NM's picture
Replies 5
Last reply 10/25/2010 - 9:47pm

Background: diagnosed 3b in 9/2008 with an upper left arm lesion. Clean scans through 11/2009. A sudden brain bleed 6/2010 turned out to be a metastatic tumor that hadn't shown on the 11/09 scans. An emergency craniotomy took care of the bleed and I had Gamma Knife Surgery 7/2010 for the primary tumor as well as one less than 4mm discovered at the same time. Full body scans done 6/2010 showed no other distant lesions.

S

Full body scans taken 9/2010 as a followup to Gamma Knife showed a new tumor on the right adrenal gland and we decided it was time for systemic therapy. We are waiting on the results of a biopsy taken 10/11/2010 and sent to France to see if I am c-kit positive and will qualify for a focused drug trial. Pathology done at the hospital (UNM Cancer Research Center) showed very sparsely scattered groups of 1 or 2 melanoma cells in the new tumor and my onc and I have decided to proceed with a Phase II trial of Carboplatin, Paclitaxel, and Temozolomide rather than wait the additional weeks for the c-kit analysis. If I am positive, I can always move on to that treatment.

I'll be getting the first infusion this coming Monday morning and I'm wondering if any of you who have experienced chemo have any suggestions or advice, things you wish someone had told you in advance. I'll be getting two 28-day courses before we do another set of scans. The goal is to find something this tumor will respond to, get it reduced in size, and then remove it surgically. I will have as many as six courses if we are seeing any improvement.

I have a great local Healing Team of a Dr of Chinese Medicine/Acupuncturist who is also an RN who has extensive experience with treating chemo side effects using needles. I also have a Homeopathic Doctor with advanced study and certification for using diet and supplements to assist with the side effects of chemo.

Some good news - a brain MRI done last Saturday showed the primary brain tumor (2 by3 centimeters originally) has reduced by 50% and the small one has stayed stable at less than 4mm and my onc feels it is most likely just a bit of scar tissue now.

Is there anything you found helpful to do before infusion? Eat or not eat? If eat, what was helpful? Anything that you brought that helped you to be more comfortable during a three hour infusion? How about the best things you found to do after treatment? Anything you can think of that you wish you had known will be greatly appreciate.

Thanks in advance - Carmon in NM

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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glewis923's picture
Replies 1
Last reply 10/25/2010 - 9:26pm
Replies by: Anonymous

Dear Fellow Mellas:    I've called some more #'s and found that I am in grevious error in what i thought i heard from a head research person from a major cancer center.  I've been under stress and a little hard of hearing (too much Rock-n-Roll and drum playing).  I was wrong, wrong, wrong and should never have put up something of that importance unless i was 1000% true!

Please accept my idiotcy.  

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

Hi,

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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