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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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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Dear Fellow Mellos;

Just talked with VERY helpful folks at Eastabrooke cancer center in Omaha.  They told me the GSK 2118436 B-raf drug trial phase II (NCT 011537630) had been pulled (terminated?) by FDA nationwide.  MDAnderson cannot seem to give me an answer at all.  I waited 5 long weeks for MDA to lemme know i was B-raf positive.  Now my CT scan 2 days ago show 3 Nodules OVER 1 cm. as well as the continued others.  I completed 1 yr. I-feron 3 mths. ago.

Does ANYONE know of a viable active B-raf trial available via GSK, Novartis, Roche, Bayer?, anyplace anywhere?  

I know i could get IPI, but i'm just not too impressed with the stats on it- maybe i'm wrong.  At least the B-raf drugs showed miraculous results- albeit short term;  AND  traditional IL-2 shows Proven long term results on around 10% of people.  I really wanted to do B-raf drug to at least buy some somewhat guaranteed time.

Any suggestions or trial knowledge greatly appreciated!

Love, 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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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
Ohio.

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

http://www.youtube.com/v/6EE5i8sSmyw?fs=1&hl=en_US

 

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?

Cheers,

BonnieB (diagnosed stage 1 Nov 09)

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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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Sherron's picture
Replies 5
Last reply 10/24/2010 - 12:28pm

Hello All - well, Jim went to the VA center in Denton, Tx. on Monday, Oct 18th..the doctor examined him...He is definitely Stage IV, which I had already figured that out...The doctor does not like the way his stomach felt, nor his coloring.  They did blood work on him...and have started him on pain medication.  They wanted him to wait until Dec 3rd to come in, but my daughter-in-law, bless her heart, is a good advocate for us...She told them that was not acceptable,  This was last Friday..Well, fortunately, they let him come in on Monday., the 18th.  They called my daughter-in-law because they could not reach my husband.  I was on my way to work on Tuesday morning, they said it was an emergency that I need to take to VA ER  now.  I turned the car around and met my daughter in law at the house, went in, woke him up and said you need to go the hospital...I thought there would be a huge argument over this...No, he agreed..His hemaglobin (sp) which last year was 18 was now 6.3....He needed a transfusion.  We drove to the VA across Dallas, got to the ER and they got him right in...by then, it was down to 5.3....they admitted him and gave him 4 units of blood over a period of 9 hours.  We were there for 2 days,...they released him last evening,   with it up to 9.8, which is still not good.  I have a feeling we might be doing this again soon.  I  have scheduled another appt in the VA center in Denton to check his blood on Nov 1st.  His liver enzymes are perfect.  The doctor thought they would be off the wall.  His color was awful.  He looks pinker now, but still not eating really good.  Of course, they wanted him to do a colonoscopy and upper GI, but of course Jim was not ready to do this.  The oncologist, said when it goes back down, he will give him another  transfusion...maybe by then Jim will be open to a colonoscopy..If it's Mel, maybe they can remove it and resesction...You all know  how hard it has been for me to get him to the doctor, so just getting him to the regular VA check-up for pain management was a big deal....and then the hospital....but he was so far down, he did not give me much trouble at all.  I was shocked...So, am hoping and praying that if his levels go down again that, he will be open to the colonoscopy.  They called his blood levels critical...The VA doctor also told us to go file an Agent Orange Claim right now.  So we will be doing that in the morning.  Please keep us in your prayers.

Take Care,

Sherron, wife to Jim

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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].

 

http://www.translational-medicine.com/content/7/1/45#B43

 

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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