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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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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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,

ChristineL

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
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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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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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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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].

 

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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ValJaneMB's picture
Replies 29
Last reply 1/20/2011 - 9:24pm

Hi Everyone.  I have been lurking on this board for a few years now but now realize that by joining I will get the info. I need to help me decide on my next course of treatment.  As you can see by my profile, I am a 57-year old woman with what my Oncologist calls 'low bulk' disease even though it is Stage IV.  I would like to hear from anyone who has been through Interleuken 2 therapy.  As a Canadian, I will have to travel to Pittsburgh for treatments.  Right now, I do not know the hospital.  Everyone has posted lots of information on side effects, etc.  But how safe is it?  I have the following choices:  1.  wait and see with scans every 3 months.  2.  Dacarbazine treatment here in Winnipeg.  3.  Interleuken 2 treatment in Pittsburgh.  Which has a better chance of success?  Which treatment has the worst side effects?  Does anyone know how quickly melanoma progresses from the lymph nodes to other areas of the body?  That would help me with the 'wait and see' choice.  I forgot to mention that for some reason, the one year of Interferon does not make me eligible for IPI trials.  Only by trying and failing Dacarbazine or IL 2 will I be able to receive IPI.  Who knows why?  Anyway, I am thanking everyone in advance for responding to my questions.

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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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glewis923's picture
Replies 2
Last reply 10/23/2010 - 2:25pm
Replies by: glewis923

Sorry- I made typo and added extra "0" in previous post.  Guess the wonderful FDA considered this particular trial to be too compassionate!  Damn stinking beurocrats and trial lawyers!!!!!!!!!!!

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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This was recommended as an optional treatment alternative by Estabrooke Cancer Cent. in Omaha.  I know they are doing this study at Sarah Cannon Cancer Cent. in Nashville.

Would Love to know if anyone has done this protocal.  

 

Thanks & 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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