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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Replies by: gaby

I haven't been on here in a while, but I wanted to stop by and let you all know how I'm doing. You have all been so great and uplifting to me, and really helped me through so far. I was induced on March 13th, and gave birth to a beautiful, healthy baby girl. I was very happy to meet her, although melanoma loomed in the back of my mind the whole time. On March 21st, I had PET/CT scans done, and got the call on March 24th that they were all clear! Right in time for my Fiance's birthday on the 25th, so we went out to eat and celebrated both the good news, and his 26th birthday. It was a very good night. But I knew I had to have the lymph node dissection done still, since one node had micromets found after SNLB. I had this surgery on April 2nd. WOW...I did NOT expect that much pain. The groin area is NOT a place you wanna have surgery...and I guess the fact that I had the surgery about 2 weeks after delivering my baby made it even harder to recover. I spent one night in the hospital and am still recovering at home. I did develop a very nasty staff infection 2 weeks after surgery, which landed me back in the hospital, and then at my oncologist's office every day for a week for IV antibiotics. It's all cleared up now. So far, very little swelling/lymphedema. I actually ONLY get it when I wear my compression stocking. Weird...also, the rest of the lymph nodes taken were ALL CLEAR!!! This was the first time I could really breathe in months. It was a wonderful moment. I do know that I always have to look out for melanoma now though, for the rest of my life. But I am hopeful that I will beat the beast. This has by far been the hardest journey of my life, and I want to bring love and support to anyone else out there who is also battling this. ESPECIALLY if you are diagnosed while pregnant. I never, ever want anyone to deal with that awful awful stress. The stress from a melanoma diagnosis ALONE is enough to just drive you insane, add a melanoma diagnosis during pregnancy...I cannot even describe the despair I felt. I am doing so much better now, and I start Interferon on Monday, April 28th. I know it will be a VERY tough road, but I'm ready.

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/23/2014 - 9:53am
Replies by: Anonymous, Kelly Smith, Janner

Hi! I have recently been diagnosed stage 1b melanoma. I'm a new mom a freaked out that I won't be around to see my baby grow up. Can stage 1b make it? Even if the primary is 1.8mm? 

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Anonymous's picture
Replies 10
Last reply 4/23/2014 - 9:28am
Replies by: Anonymous, mbaelaporte, POW, aldakota22, G-Samsa, Cindy VT

Since being diagnosed with Stage 4 I’ve continued to work full time (only taking time off for surgery).  Recently my work stress has been increasing (meaning long hours at work, major projects, travel, etc).  While my health anxiety seems to be ok right now, my work anxiety is higher than ever!  I worry that this could have a negative effect on my health (currently in clinical trial). 

I am going to reach out to my medical team to get their advice (the nurse and counselor) about how folks handle it but wanted to hear folks thoughts on the process.

1.       I may see about reduced hours or work from home ½ time?

2.       I have short term disability I could see about taking (if my doctor is in agreement)

3.       OR look at applying for social security disability.  But that leaves me with LOTS more questions:

a.       What steps need to be done to apply for this? 

b.      How long does it take before it would start?

c.       What about insurance?  I worry about this since I have a good job/benefits which is why I put up with the work stress… but it’s just getting to be too much!  Would I be better off with a no-stress job? 

Any thoughts/guidance folks have would be appreciated! 

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Leslie'sHusband's picture
Replies 7
Last reply 4/23/2014 - 9:23am

I have a question about what Les and I are seeing in her JP drain...  The nurses told us not to be concerned about seeing blood clots in the drain, and not to mess with them.  What they didn't tell us is what, exactly, a blood clot in the drain tube looks like.  We are seeing a long, thin, pink thing that is almost the length of the tube.  It looks like what I would imagine a vein would look like.  Fluid is still draining, but that thing looks strange.  Les is going to call the Dr's office this morning to ask about it, but I wanted to ask here, too.  Should we be concerned?

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Ginger8888's picture
Replies 1
Last reply 4/23/2014 - 9:21am
Replies by: Kelly Smith

Hi everyone, i'm Ginger and i'm newly diagnosed with stage 3 C melanoma ..Here is a  little bit of my story..I'm hoping to learn some things from you guys and what you've been through..

I had a mole removed in Jan of 2014 by Michelle Palazzo and was diagnosed with stage 3 C melanoma 10 mm with lymph nodes involved..I underwent a neck dissection by Dr. William Wooden from Indiana University Hospital in Feb 2014 and the melanoma had wrapped around nerves and muscles in my neck..Surgeon said each node involved had 33 fingers of cancer coming off each one..He was shocked.He referred me to Leslie Fecher a melanoma specialist also from Indiana University Hospital.I am currently on my 3 rd week of the high dose interferon IV under the care of Dr Mian Mushtaq in Jeffersonville Indiana Norton Cancer Center(transfered treatment closer to home )and am not having hardly any side effects, i'm a little tired but that's about it..I will be doing the shots 3 times a wk for 11 months and possible radiation...I had a CT scan ran two wks ago and it came out fine..I'm hoping the shots are as easy as the 30 day treatment.,

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/23/2014 - 9:01am
Replies by: BrianP, Anonymous, Marianne quinn

Hello to ALL, I am new to this site. I have questions. I am a 36 year old women. I have found a lump in my groin area about the size of 2 peas put side by side. I do not feel pain, just sum discomfort only due to its near the crease of my leg. I have also found a dark spot, a small spot on the labia. My questions are, has anyone had anything smiliar to this?
I do have a scheduled appointment with my doctor in June. I would be very grateful for any information, I would not like to assume that it could be melanoma, I have browsed the web for photo's, I didn't find that helpful, thank you for replying if you do.

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evleye's picture
Replies 5
Last reply 4/23/2014 - 8:04am
Replies by: evleye, dsfarms13108, kylez, Anonymous

Is there a website or document that summarizes all the different treatments available (FDA approved and trials)?  I am so confused by all the names and abbreviations!  I find out tomorrow what my plan of action is for my treatment and want to be prepared with some knowledge on the different options I may be presented.  Thanks!

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I don't know about you but when I read articles like this I feel I could read the same within 5 years from now for advanecd Melanoma:

http://www.theguardian.com/society/2014/apr/16/patients-end-stage-liver-disease-hepatitis-c-new-drug

It seems that all of a sudden they were able to cure 90% of all patients suffering from this desease. I am happy for those patients and hope the same for people suffering from advanced melanoma (knowing that of course on the level of molecular biology this in not comparable at all).

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/23/2014 - 6:58am
Replies by: Anonymous, POW

I was diagnosed Stage IV in January and BRAF+ soon thereafter. Significant tumor load affecting all major organ systems, though I hadn't felt that anything was wrong until December. By the time I finally started treatment, I could barely walk across a room without help.  No brain mets. Getting treatment at Providence Portland.

After two months of Zelboraf, my tumor load had decreased by half and I was feeling much, much better. Soon after, I noticed what I thought was a new tumor under my scalp and then more in my neck, two new nodules near the primary, and another bump I could feel on my shoulder had started growing again. I was hoping for longer on the Zelboraf, but you get what

you get.

I've been given four options:

(1) IL-2

(2) Ipi (with intent to join an Ipi/Nivo trial as soon as the new arms open, but that could be weeks)

(3) IPI and GR-MD-02, a galectin inhibitor (Phase 1 trial, 85 days. I'd almost certainly be in on the lowest dose as it is just starting and there's no dose escalation for individuals.)

(4) Randomized trial, IL-2 with SBRT or IL-2 alone. 

All this keeping in mind that the approval of Nivomulab is imminent.

I'm scared of the IL-2, not so much of the side effects, but because I am reluctant to miss out six weeks of what could be my last summer with my kids. OTOH, I'm relatively strong right now and might not be able to tolerate it later if another treatment or treatments fail. Though the chance is small, there is still "home run" potential.

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/23/2014 - 6:14am

I am newly diagnosed stage 4 patient with mets in spleen liver and brain. I am currently on vem as have tested Braf positive. However I am sick with worry about my prognosis. I am only 33 but I am not going to make it to my retirement am I? X

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kellygrl's picture
Replies 10
Last reply 4/23/2014 - 2:42am

My husband was diagnosed with brain mets 3/12, had WBR, tolerated well, but tumors did not respond. He got 14 good months out of Zelboraf, tolerated well... then Zel quit 9/14. Gamma Knife in Aug 9/14, tumors responded. Has been on Dabrafenib/Trametinib combo since 11/14, recently added Yervoy to the mix & has had 2 infusions so far. A second Gamma in Feb and results today from all of the above.... brain mets shrinking and some necrosis from gamma! Most likely a third gamma in a few mos to get remaining tumors.

Keep that Positive Mind and Attitude!!
Stay Strong and prayers sure don't hurt either. :)

Kelly

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hawaii marcus's picture
Replies 4
Last reply 4/22/2014 - 8:46pm
Replies by: hawaii marcus, Kim K, Becky

HI Everyone,

I have been free from my original cancer in my left nasal cavity since April 2013. I have mucosal melanoma and my 1 year anniversary PET scan found regional spreading in my left cervical lymph nodes. Lucky me!

An ultrasound this week showed 3 lumps, the largest being 1.3 CM and the smallest .5 CM.  I am a resident of Hawaii, and love my hospital, The Queen's Medical Center. But they suggested I follow up with my contacts from UCLA.

Unfortunately Hawaii only has 2 Head and Neck Oncology surgeons. I chose a 2nd opinion last year for my lateral rhinotomy, and a family member suggested UCLA. I met Dr. Glaspy (Onc) and Dr. Abemayor (H&N Surgeon). Surgery removed any tumor, but they didn't find much after my sinus surgery in Hawaii that found the malignancy. Then Dr. Glaspy suggested Interferon, but said the risks were not worth it for me.

In June I followed up with 30 doses of Radiation at Queen's. And now just following PET scans every 6 months.

 

This new discovery does not scare me, but Dr. Glaspy suggested I look at PD-1. Any one have good experience with PD-1?

I am reading lots of good things online about it. Only quirk is they do not offer PD-1 here in Hawaii, so I may be flying to LA a lot over the next year. Cha-Ching!! Not good on my bank account!

We are ready to kick this Cancer's A$$!!! Wish us luck!!

 

Aloha,

 

Marcus

 

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Pam S.'s picture
Replies 5
Last reply 4/22/2014 - 8:38pm
Replies by: Pam S., Maureen038, Anonymous

My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long time to recover was going to go back to work Feb 3. Started IPI in JAN It didnt work.  he had multiple seizures on Jan 27--scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation  Tumor size of baseball. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death--dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center He doesnot have the bfar mutation. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat--I dont think my husband has a lot of time and i feel helpless.........Thanks to anyone who can respond Pam.

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/22/2014 - 5:47pm
Replies by: Janner

In 2010 there were quite a few posts on Celebrex  any updates

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LibbyinVA's picture
Replies 2
Last reply 4/22/2014 - 3:46pm
Replies by: LibbyinVA, Anonymous

Does anyone have any recommendations for a dermatologist in the Chicago area? The patient is a young woman dx'ed with stage I melanoma. She needs follow-up checks. Should also mention she has very limited health insurance.

Thanks for any help you can provide!

LibbyinVA

Never, ever give up hope!

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