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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sharon0803's picture
Replies 13
Last reply 4/18/2012 - 6:42pm

 

Hello All,

 

I am new to the forum, I have however, been lurking.  I wanted to introduce myself and my current diagnosis.

 

My name is Sharon and I am from Illinois, I have recently been diagnosed with Stage 3B.  I have had the WLE and the RGD.  I saw the Oncologist last week to go over follow up treatment.  He did want me to go into a clinical trial.  The trial would pit an FDA approved drug for Stage 4 (IPPY) against the Interferon.  A machine would pick which drug I did….  I did not want to do the interferon, but would be willing to take my chances in the clinical trial.  After researching clinical trials and my insurance, I found it would be an expensive option (insurance will not pay anything) without any say so in the drug.  Therefore, I have not opted not to go in.

 

I was hoping to hear from others with Stage 3B and some of their follow up treatments,  I am especially interested in Brain scans… my Doctor has not told me of any recommended scans that would take place IF I opted not to go into a clinical trial.     

 

Looking forward to reading other’s post.

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yoopergirl's picture
Replies 16
Last reply 2/21/2012 - 8:46pm

I will be having my third infusion tomorrow and the past 2 days I have had the chills so bad, so am thinking is this due to the Yervoy or did I pick up a bug? Last night about 2 am I shook so bad from the chills that I woke up and took some tylenol and then about 4 am was sweeting so bad had to throw the blankets off, now has anyone had this?? I do have the itching I kinda hope this is just a bug. I will have my labs done before I see the doctor so I assume if it is anything that I should worry about it will show up then. Thanks again, this board has given me so many answers and questions that I have written down for the doctor.    yoopergirl

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SStamps's picture
Replies 1
Last reply 2/20/2012 - 11:12pm
Replies by: Ali

Had scans done last week brain, lung, spine and leptomeningeal show improvement , but tumor on rib has grown so the Dr wants to start Braf he also said he may reintroduce the ipi. We have use special pharmacy the insurance company works with to get the Braf so we are waiting.   Mickey has been unable to drive since starting the IL2 treatment for the spinal fluid so he spoke with Dr about this the Dr ordered a EEG and Mickey still can't drive. He is bummed about the news but accepting.  His short term memory is off some, a word comes out wrong some and he can't drive because they are afraid he could have a seizure, but besides that he is doing good.  It has almost been a year since the pathology confirmed Stage 4 melanoma.  I feel very bless to have this time with my husband :)

Samantha

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natasha's picture
Replies 18
Last reply 2/22/2012 - 9:12am

How big is chance for 2mm Breslow unulcerated Clark 2 melanoma to spread to Lymph nodes?...How it was in your situations? I am going to do  SNB and scared to death..:( Thanks again and again for all you support and information yougiven me.

I am keeping you in my prays.

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Maxximom's picture
Replies 20
Last reply 10/14/2013 - 12:44am

I just found out that I am BRAF negative..I am very upset. I started IPPI on Monday. I need to have a Plan B in case the Ippi fails. I am one of those people that just seeem to take the one day at a time approach to life.. even though I know that I should. What options are out there for me..clinical trials..or are there treatments.. I doubt that I would be able to withstand the IL2 treatment..for many reasons.Any advise would be appreciated.

Joan

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Angela C's picture
Replies 3
Last reply 7/28/2012 - 4:18pm
Replies by: tammy4102, LynnLuc

Hello.

I have a tumor behind my pancreas and we are discussing having it removed via surgery, along with the tumor in my adrenal gland. I heard from my oncologist today and after his discussion with the surgeon, they believe that a whipple procedure would be needed. They would have to remove part of the head of the pancreas to be able to reach the tumor. So, part of the pancreas would be removed, there is a possibility of some of the stomach having to be removed as well. They also have to take part of the duodenum and then change the path that the pancreatic juices take.

I don't have a complete undersanding of the procedure just yet, but the doctor said it's a major procedure with some possible long term side effects, like a change in eating habits if they have to take part of the stomach. It also sounds like there is a higher level of risk than any other surgery I've had in the past and a higher risk of not making it through this surgery. Part of the reason for this is that these lymph nodes (tumor) are right next to a major blood supply and the adrenal tumor is also right next to the vena cava. So, there is a fair amount of risk with this surgery.

It all sounds very scary. I have a consult at NIH next Thursday to talk about getting into the TIL trial. So, if that is the case, this surgery would be done there. I would imagine they are very talented doctors and probably some of the best that I could have performing a surgery like this. I've done IL-2, MDX-1106 and Yervoy. So, I think TIL is about the only treatment option besides surgery available for me.

Just wondered if any of you have had a whipple procedure?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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  Just wanted to pay my respects in the one forum where we can really share the pain.From all I have read and heard about Gary was that he was a very warm and honest man besides being one hell of a ball player.RIP   Gary Carter .

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Abachert's picture
Replies 6
Last reply 2/21/2012 - 8:01am

So I'm not truly a single mom, but my husband works with a collegiate football team which means during the season I basically am because he's at work for 14-17 hours a day and with the new coach, his hours have stayed like this even when they are not in season. We have a 2 year old daughter and I work full time as a sales manager for a hotel. Im stage 3A and we are debating if interferon is what is best for me and the family. I wanted to hear from single parents or families with young children on why you chose to undergo treatment and how it affected family life. Also, for those that are done with treatments, how long did side effects last after you finished and have there been any other issues that have come from doing the interferon? Thanks for the help! I want to be healthy but if they got all the cancer through surgery, is the interferon worth it?

Life is an occasion, rise to it!

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Kellie-T's picture
Replies 2
Last reply 2/20/2012 - 1:46pm
Replies by: Kellie-T, aldakota22

Anyone taking Zelboraf get chills? I disn't see that one on the list of side effects.

Life is not by accident. Make every minute count.

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natasha's picture
Replies 19
Last reply 2/26/2012 - 2:10am

Hi!  Could you ,please ,recommend food suppliments .It should be something what can help to boost our immune system.

All I bought is Garlic tablets and Vitabiotics Immunace Antioxidants with vit A D E K C zinc copper niacin selenium.

Could you recommend something helpful ,please???

Thank you very much

Natasha

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arnat's picture
Replies 5
Last reply 2/19/2012 - 6:45pm

My 89 yr. old mother was recently diagnosed with stage III melanoma.  She is due to have a tumor removed on her leg (calf), the lymph node in the groin removed and a skin graft for the calf area.  She will have a wound vac.  My mom lives with me and I am her primary caregiver.  She has dementia which complicates things.   I am having a very difficult time dealing with her going to a nursing facillity after the surgery.  I am afraid that she will be over-medicated and never come home.  Is this post- surgery wound care something I would be able to take care of at home?  Her medicare would send a nurse to the house.  Or would she be better off in a skilled nursing facility? 

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NYKaren's picture
Replies 7
Last reply 2/19/2012 - 8:16pm

 

I just got home from seeing Dr. Wolchok at Sloan.  As I've mentioned, while awaiting an Anti PD-1 trial, I've been getting my spreading mets frozen and applying Aldera.  the entire side of my face from my scalp onto my neck, where the mets are, is a red, swollen mess, but the treatment seems to be keeping the mets in check.  Obviously, the derm (Dr. Halpern) cannot keep chasing the mets as they spread, but they're pleased at the stop-gap measures.  There's a lot of pain involved, and I'm taking 10 mg. of Oxy on the days I use Aldera (about 2 doses/day.)  

In the past 16 months, I've had WLE and negative SNB, 3 months later, recurrence w/met. satellites, putting me at Stage IIIc, radition, which stopped the spread for 1-2 months, then I was one of the first "commercial" users of Ipi (Yervoy) after its FDA approval.  I was a partial responder, then stopped responding.  Then 2 rounds (4 weeks total) of IL-2; i responded at first, which, in retrospect, I believe was due to the Ipi, then I did not.  I am not a cry-baby; I took all the IL-2 bags and they were all quite impressed.  But the pain from this Aldera/freezing is knocking me on my butt!

So the next step was supposed to be an anti pd-1 trial.  Curetech rejected me because I'm not Stage IV. I am Stage IIIc unresectable.  As we know, maybe that rejection was a good thing.  So, NOW, Dr. W's planning on Ipi reinduction (starting the approval process tomorrow.)  

If I do not respond to Ipi, ta da, here's the news:  BMS has changed its _____(i forgot the word he used) and in ABOUT 2 months, he expects BMS's PD-1-only, without prior Ipi exclusions, trial to open.  He had no news about Merck, except they're going through issues (not medical, more like funding, internal stuff, etc.)   I asked him which drug is better, and he said he thinks they are both good and has heard positive results from both.  Regarding prior ipi use for BMS, there will be a narrow window, so he thinks our timing might be good.  I don't really know what that window will be, but we need to all stay tuned. 

LSorry this is so long; I hope it can be of some help to us.

All the best,

karen

Don't Stop Believing

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bdhf's picture
Replies 11
Last reply 2/22/2012 - 9:03pm

Would love some advice!!!  After having the 3 cm tumor removed from my brain in December, whole brain radiation just completed due to a new 4mm brain tumor, my docs are pushing for resection of a lung nodule that was found in December when all this started and hasn't grown at all.  I have had 2 bronchoscopies that say that there are no abnormal cells but the nodule is so deep in the lung the docs say they can't be 100% they got to it during the procedures.  I really do not want a resection.  The nodule didn't show on the PET scans, just CTs.  I feel in my heart of hearts (for whatever that is worth) that it is not another tumor, especially since it has grown at all in 2 months.  

What would you do?  

Thanks!  

Brenda

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himynameiskevin's picture
Replies 10
Last reply 2/18/2012 - 4:44pm

Well I had a CTscan of my chest/abdomen a couple hours ago to see if I am hopefully a late responder to the Yervoy I finished on Dec 20th. Maybe hear word tomorrow or Monday. Not sure if this is still too early to tell, but it'll give some comparison to what was shown on the scan from Jan 9th. I've heard about it possibly taking up to 5 months to show results, not sure if from first dose or last dose, but probably varies from person to person. Physically I feel pretty good, no pains or anything abnormal, my 4-month itchy-throat cough has subsided and my slight sensation of paralysis in my left hand is pretty much gone too.  Hopefully a good sign the SRS was effective. Mentally though, this last week has been the hardest since all this started. Although unlikely it will happen again with the SRS and temporary medication, the second seizure, as mild as it was, has made me a little paranoid, a bit worried or concerned, thinking "but what if it does happen again?" "what if I'm alone?"  I'm sure these feelings are natural and will pass with time, peaks and valleys have always been a part of the territory dealing with this, I remind myself I’ve been through valleys before, and I made it though, and then enjoyed the peaks. I've had so many wonderful times during the course of all this. I'm sure most of this unsettling feeling is just from this “temporary state of uncertainty”, this waiting time where everything is in the air between scans and growth and treatment options.

At least there’s that word “temporary”. Implying that things can always get better, no matter how unlikely, as they have before. In the most perfect, replayed, manifested, thought about, prayed for, miracle of a story imaginable… my scans today would show that I am indeed a late responder, the tumors in my lungs are shrinking and therefore the ones in my brain may be too. They start me on another follow up round of Yervoy or maybe finish up with another something at the NIH. And things continue to shrink and disappear indefinitely. Oh how I wish that… not just for me, but for Brenda, my family and friends, doctors, nurses, and any people who have supported, encouraged, and helped me through these times. I want to make you proud.

Thanks for reading.

Staying focused and optimistic,
-Kevin

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Replies by: Swanee, gtown, Janner

I haven't been on this site in about 9 years - I'm just over 10 years NED after a stage 1B melanoma on my ear.  Recently a friend of mine was diagnosed, but I thought it was odd that the Dr. told him he has metastatic melanoma, but the only thing they have done so far is an excision and biopsy.  It is 3mm, but without seeing the lymph notes or doing scans, how could you diagnose this as metastatic?  Am I missing something?

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