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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steelergirl's picture
Replies 3
Last reply 3/16/2011 - 10:39pm

I had a PET/Ct scan on Monday, March 7.  Nodules in my left lung popped up on the PET scan.  I have to have lymph nodes removed from under my left arm.  A biopsy will be done.  I will know more after i see the surgeon on the 25th of this month.  I will see my oncologist again after the biopsy.

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LynnLuc's picture
Replies 7
Last reply 3/16/2011 - 10:35pm

March 15...I had my first appointment at 7 AM and the last one at 6:45 PM and left Moffitt at 730 PM...arrived back home at 10 PM...it was a very long day of fast food, apheresis, scans and such!

I didn’t get to see my doc today but I am sure he will contact me with the scan results in the next day or two...he is awesome like that! I usually always get the scan results on the same day...but considering how late everything ran I couldn’t expect it yesterday.

March 16...dragging my butt to work...I still don’t have the energy or concentration I used to have so it is difficult to get myself back in gear.

 I am anxiously waiting on my scan results...really wished I could have seen the doc yesterday...but oh well...It was my choice to have all the appointments on one day so I wouldn’t miss so much work. And Dr Weber doesn’t do clinic on Tuesdays…

 Yes!! Got an e-mail from my favorite oncologist….

 "Mrs. L; MRI negative, the CTs were stable and show no obvious evidence of disease. Congrats! See you in 12 weeks. Jeff W. "

Speechless!..What can I say?? March 26 will be one year NED.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Replies by: Rydell

This is a good article on Ipi

http://www.internalmedicinenews.com/news/oncology-hematology/single-arti...

An excerpt from the article:

 

When chemotherapy works in advanced melanoma, it works quickly: A scan obtained after 6-8 weeks of therapy will show stability or shrinkage. That sort of response can also be seen with ipilimumab – but in addition, two novel patterns of response have been observed. One involves an initial increase in total tumor volume at the beginning of therapy, followed by delayed onset of stabilization or shrinkage.

Even more strikingly, some patients develop entirely new sites of metastatic disease when ipilimumab is started, with stabilization or shrinkage of both the new lesions and the baseline lesions coming several months later, according to Dr. Carvajal.

Our experience with melanoma: http://emandmichael.wordpress.com/

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FormerCaregiver's picture
Replies 8
Last reply 3/16/2011 - 8:26pm

Could it be that long-term stage IV survivors have something in common? I
think that it would be interesting to see how many have had GM-CSF
(Leukine) at any time.

From what I have read, Leukine tends to change the nature of melanoma in
some patients. One study has found that "... the recurrence is changed, in
that they are solitary, and allow for surgical excision".

It would be great to get some opinions on this. So what do you think?

Frank
(PS: NED means no evidence of disease).

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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MaryD's picture
Replies 18
Last reply 3/16/2011 - 8:21pm

I feel very fortunate to say that my latest CT scan was still clear - 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2. 

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals  who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..

Mary

 

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I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

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Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

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LynnLuc's picture
Replies 1
Last reply 3/16/2011 - 11:46am
Replies by: KellieSue

Well I had my latest scans on Friday...The news was not good. There is a new mass on my right lung that is pressing on my trachea. This causes me much pain, shortness of breath and coughing.

I was on a Braf-Mek inhibitor clinical trial, however, I was having terrible side effects, mainly daily fevers. I was immediately taken off this trial Friday. Then given 2 blood transfusions since my hemoglobin continues to be very low.

Now we have 2 options....We wait 28 days to start Ipiluminab "Ipi" or if the pain increase they may have to radiate the tumor sooner.
The other option, if approved, is much more complex. Tomorrow the doctors will meet to discuss my developments and see if surgery is at all possible. If so, they will harvest some of the tumor and make an injection and give it to me along with IL-2 and chemo. This will definitely be the tougher route. 

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mom3girlsFL's picture
Replies 2
Last reply 3/16/2011 - 10:15am
Replies by: Lisa13, RMcLegal

Does the amout of nodes involved affect the progression and prognosis?  I've had two groin surgeries - 1st 9/11 nodes were melanoma and 2nd 4/5 were melanoma.  I had a clear PET in nov 2010 after discovering the recurrence in september (PET) while on interferon.  Guess I'm just working myself into a frenzy before my oncology appt on Monday and knowing another scan is around the corner!

Thanks for your help. Laurie

Do not fear tomorrow, God is already there.

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mom3girlsFL's picture
Replies 4
Last reply 3/16/2011 - 3:22am

Got the news today - CT abdomen/pelvis and chest xray all clean!  Whoo-hoo!  Oh yeah, doing the happy dance!

:) Laurie

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/16/2011 - 3:20am
Replies by: MRFUser2011, KatyWI, ShariC, lhaley, Anonymous, MichaelFL

Hi Evveryone,

 

I am scheduled for my first brain MRI with & without contrast. I want to get the best pictures so can anyone tell me how to prepare for a MRI brain scan. Do I need to fast?

 

Thanks foryour reply.

 

 

 

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KellieSue's picture
Replies 1
Last reply 3/15/2011 - 9:36pm
Replies by: dawn dion

Still feeling good. Had a ECHO/EKG today and about 9 vials of blood drawn today. Yikes!

My thyroid tumor seems to have disappeared! It was stable and even shrunk a bit with the 2 doses of ALT and IL-2 but it was still sticking around on my neck. But I can't feel or see it anymore!

Everything looks good, I'll have my first CT in about 4-5 weeks. I'm very antsy, hoping the scan shows how good I'm feeling!

I did start on dicyclen(sp)  for facial rash, I don't have one yet but it's probably coming so they want to try and stop it in it's tracks.

Also another weird thing, I was given a bottle with 32 pills 3 weeks ago so I only took  20 pills up to today but I had to turn my pill bottle in and I got another one with 32 pills in it. Weird right? You would think with what this stuff costs they would want to use it all up before they gave me another bottle. Oh well, I'll do what they tell me. :)

Dr is very happy with how I look and feel!

Kellie(From Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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lhaley's picture
Replies 5
Last reply 3/15/2011 - 9:30pm

I had 5 nodes removed in October that were under the collar bone. They went in on the side of the breast to get to the area.  In Dec. my breast started turning pink. I went to my gyn and she put me on an antibiotic, she wanted me to go back and see my surgeon. I called him and from the description he wanted to wait to see if the antibiotic helped ,(I have to travel to see him) everyone was thinking mastitiis.  It started to get lighter then 2 weeks later it was back. Happened to be at family Dr. and she put me on another antibiotic. I called surgeon again and he wanted me to see a infectious disease Dr. Found out I needed a referral. Went to local oncologist and she agreed but had me use warm compresses and massage and said to come back the next day to see if it helped. It did get lighter but in the meanwhile my liver counts were checked and were extremly high so that had to be dealt with. It was a drug interaction from the antibiotics and my cholesteral meds. Referral was never made.

It was now time for me to go to Charlotte to see Dr Amin (mel specialist). He took one look at the breast and went and got Dr. White (my surgeon who also specializes in breasts and mel). He ordered a diagnostic mammo and ultrasound.  This was done at home. Results were inconclusive with them seeing changes of thickening of the skin and wanted punch biopsies to exclude inflamatory breast cancer. In the meanwhile I've seen both my family Dr. again and my local oncologist. So off to the derm I go today. It was red when I walked in and by the time he sterelized the area and marked what he wanted to do the area had faded somewhat!  He then decided that a punch biopsy would be looking for a needle in a haystack since the pinkness was so evenly distributed over the entire breast.  He suggested a breast specialist he knew in the next town. Came home and called and ...... she has retired. 

I am so confused!  Here I am stable with stage IV mel (watching 2 nodules in lungs), my mel has always been a bit different with it presenting twice in the bladder. I'm sorry this is so long but if you are still following could this be a result of the nodes being removed?  A few Drs. have speculated that there could have been damage to the lymphatic pathway but they just don't know.  I can live with a pink breast (it does not hurt) but if it is a form of breast cancer then I have to take action.  When I had massive reconstruction on the other breast from surgery with mel I did not have this discoloration issue.

Any help would be appreciated,

Linda

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Carmon in NM's picture
Replies 6
Last reply 3/15/2011 - 8:29pm

I can't believe I made it through most of winter, five months of chemo and I still have my hope and sense of humor intact! Best of all, in about ten days I'll start feeling better and will just keep feeling better and better!

I had a consultation with the oncology surgeon who will be removing my right adrenal gland and what is left of the tumor. We had hoped it could be done laprascopically which would be an easy recovery but the tumor has gotten so tiny and even though the biopsy showed adrenal tissue, it is now separated from the adrenal gland and she is afraid she won't be able to find it if she attempts to do it laprascopically. That means she will be opening me down the front mid-line and I will spend 3-5 days in the hospital.

I also met my new medical oncologist and really liked him too. I told him I hoped he could handle my often twisted sense of humor and he replyed that it is patient's like me who light up a doctor's day! He also handled my interrupting his and my former oncolgist's discussion about my treatment with questions about my own research and opinions. In all, I felt really good about my doctor of the last two year's choice for me as she moves on to Vermont and a new position.

I'm scheduled for surgery on April 19th and recovery once I'm home means not lifting anything larger than a milk carton for six weeks. A hard thing for someone as active as I am but worth it to get and stay well! I am so psyched that the chemo is done and has worked so amazingly. I intend to spend this summer riding my beautiful horse and enjoying the incredible place we live with my husband. I know that sneaky mel could still be hiding somewhere but I choose to continue to be happy and live in this incredible moment right now!

My best to all of you now and my prayers that we each find the treatment that will work for us.

Carmon in NM - Stage 4 with brain and adrenal mets since 6/10

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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