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.

Expand/ Collapse Topic
 
Replies By
View Topic
mombase's picture
Replies 9
Last reply 8/12/2011 - 5:28pm

I had a sleepless night last night as I mentally prepared for my appointment with oncology this morning to discuss systemic treatment options since I had decided not to proceed with the Whole Brain Radiation Therapy. I was very pleasantly surprised to be seen by the head oncologist, Dr. Rajappa. He was so awesome and had all of the qualities I hoped a great oncologist would have, i.e., thoughtful, smart, engaging, optimistic, calm,...everything!  We decided that I would have a new baseline body and brain MRI/PET scan in the first week of September. I would then start either the new B-RAF drug (if I was positive for the B-RAF mutation and if it is approved by then, which it should be), or Yervoy if I was negative for B-RAF mutation, somewhere around the middle to end of September.

Dr. Rajappa made me feel so confident and hopeful with this plan, regardless of which one was followed. He was going to call pathology at David Grant Hospital to find out if the B-RAF results were in yet, and then he said I would be called immediately when he found out. I was on the light rail on the way home when the call came in...I am positive for the B-RAF mutation!! The people on the light rail must have thought I was crazy...I was crying and doing the Happy Dance at the same time!! I am so grateful and saddened at the same time for the people whose names I recognize now, and who found out that they were negative.

The good news now is that U of Penn researchers just discovered a way to make our good T-cells attack cancer cells and then multiply instead of dying off. This was tried with a few leukemia patients with outstanding results. Now the trials will be expanded to larger samples and different types of cancers.

The bottom line is...the cure for cancer is seriously right around the corner!!

Getter done!

Login or register to post replies.

DeniseK's picture
Replies 15
Last reply 9/18/2011 - 10:02am

Hi Everyone!!

I'll be starting my Interferon on Monday 8/15.  They're putting in my PICC line on Saturday.  Kinda sux cuz I was gonna go to the lake and have a sort of going away party!!  :)  I'll be sure to keep it dry but not my tummy it will be nice and wet with some silver bullets!!  :) 

I'm not looking forward to this but I feel like I have to do it!! 

My new oncologist is super cool!  Never had a doctor hug me before!! 

Anyway I'll keep updating on how it's going!!

Denise  :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

NicOz's picture
Replies 7
Last reply 8/12/2011 - 12:21am

I'm not really comfortable posting this result, as it's not going to be considered great news by many, but information is information. I started in April 2011 on the study, and by July was experiencing return of nodules/subq's, so knew something (not good) was going on. The news from the last follow-up and consult was not surprising to me, and most of my anxiety leading up to it related to "Is there a plan B for me?"

Progression is beginning/imminent, but the trial team feel that (and they really left this decision of where to head completely in my hands) I'm still receiving some benefit from the drug in terms of the aggressivness of the disease(and expect this benefit to last for around another 4 weeks, possibly 8- long shot)), and while I'm enjoying such good QOL with Georgia, it was up to me as to whether I'd prefer to have a bit more of that QOL, or start on Yervoy immediately (well... more or less- after a quick bit of zapping from Bob- their suggestion) before undergoing a treatment which may (or may not) result in more serious side effects. They don't want me to start Yervoy with an obvious progression and increased tumour burden- they prefer me (as do I) to commence it with the smallest tumour burden possible... so now I get to do the juggle ("watch carefully, and wait)") Yes, leaving it to the patient is good in a way (as only I can rate my importance of, and degree of QOL), but it's a big call when you're relying on symptoms of progression to change your treatment (or timing) Sometimes things need to progress to a considerable degree before symptoms even appear... So I had to warn my GP of the possibility of irritating tests from me about miniscule issues- to which he responded while he here today when he dropped over, that I can text as much as I won't. It won't be a bother to him.

One of the lesions they removed last time in dermatology had the path come back as an SCC . So I had to have a wider margin removed. Of course it HAD to be the obvious one on the eyebrow- currently I look like constantly surprised on one side of the face :D At least it's the usual eye I have raised for various reasons- downside of that is, it's ouchy whenever I show any expression. I should have demanded botox for the other side to even it out :P  He tells me it will drop with time! It Needs to drop back in a BIG hurry. Should at least look better without the stitches hanging out of them. A bit... I hope! (I had 3 other shave biopsies too- they're being very cautious since the SCC path came back)

I read the reports from the scans which basically looked fine, but knew full well that scan reports for studies aren't necessarily as comprehensive as one done for standard care- they concentrate on their chosen target lesions, and if something falls within the bounds of their trial specific criteria (re:RECIST), they may simply choose not to mention in the actual report, as they aren't relevant to the trial. They also compare back to the baseline scans, and when you've shown over 50 mets on that, then everything under looks pretty in their book. I.e. a few popping up here or there is still considered stable. Same for extracranial subq's.

Hence why the trial team consider progression imminent, but are happy for me to remain on the study for the moment, at my own discretion, but with close monitoring by me and consultation with them.

Overall, I'm pretty happy with my decision. It maximises my QTG (Quality Time with Georgia) - always my main consideration.  I'm confident I've made the right choice for me, but there is trepidation that I will mess up the timing of the 'swap over' of treatment. But I'll just have to trust that the good judgement that has kept me hanging around for the past 3+ years, will continue (not to mention the luck involved :D).

Sometimes I think mel treatment is akin to using stepping stones to cross a raging torrent, constantly hoping researchers are far enough ahead of us to place the next stone in the right place, to keep us moving forward?

Another bonus is that the Yervoy will be provided as "compassionate use". And my previous, (THEY failed ME) chemo attempts, means I can swap treatment when I'm ready without having to take into account the time spent undergoing another chemo. AND they trust my GP enough to monitor for side effects, after their previous contact with him- so I won't be shafted onto yet another (pffft) visiting Onc, nor will I have to hang around in Sydney- they were deal breakers. Hooray- believe me, that was among the first things I wanted to discuss. He's been more proactive than 100% of Onc's I've had in the past 3+ years, until my most recent experiences with the main 2 involved with this study.

So I'm embarking on yet another new adventure- at least there is one to embark on, I reckon :D Meanwhile, roll on... it's "girl's night" with my baby tonight, so the rest of what's going on in life takes a big, fat back seat. As it should.

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

Login or register to post replies.

NYKaren's picture
Replies 3
Last reply 8/12/2011 - 9:43am
Replies by: NYKaren, triciad

Hi again,

Just got home from seeing Dr. Wolchuk.

PET showed no new activity except a tiny spot in my lymph node, which Dr. W thinks is the Ipi, especially since he didn't feel anything there upon exam.   He said he's seen people get much worse at week 12, where I am now, and respond completely by week 16.  Here's hoping.

I'm seeing Dr. Halpern Monday; he will biopsy one of the small pieces near my eye. (he's head or co-head of Melanoma service @ Sloan.

Dr. Shaha, the surgeon, is bringing my case to the "Head and Neck Surgery Board".  Normally they wouldn't hesitate to try to excise again, but the location is so difficult and also would entail a large graft--nothing left to stretch together!   

Dr. Halpern did say that if I don't respond that we should consider IL-2 (at Yale) or Chemo.  Of course I didn't write down what he said, but the Chemo would be a mix of 3 separate drugs.  He said that only a small percentage of people respond to IL-2, but those that do have amazing sustained results. 

Stay tuned, and thank you for the support,

karen

Don't Stop Believing

Login or register to post replies.

lyndaloo's picture
Replies 8
Last reply 8/25/2011 - 2:01am

My husband was tested for BRAF and is negative.  Currently his brain mets are stable (after radiation and surgery) and his lung mets are not there anymore (after surgery).  He does have a few small spots that we know about but nothing in his vital organs. Watching and waiting is an option our doctor has given him or chemo (decarbazine), if chemo fails then he can get ipi. I am wondering how many rounds of chemo must be tried in order to be eligible for ipi (yervoy).  I am fearful they may pull the ipi study soon.  Any insight would be helpful at this point, 

Loving wife,

lyndaloo

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 8/11/2011 - 8:10pm
Replies by: Anonymous, hope4cure1

Hi,

One of the older post,stated Dr.O'day was coming back to Angeles clinic at the end of July.

Anyone have an update on his return?

 

Thanks

John

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 8/11/2011 - 9:23pm

Ok - I know this is probably a dumb question and has been discussed before but I thought I'd ask.

Right now I have regular CT scans like most folks.  Things have been clear!  My ? would be would a CT scan pick up a melanoma tumor on the skin.  For example, if a mole was bad - would it pick it up?  I typically only have CT scan of chest, abdomin, pelvis.  My primary was on my back.  Or would I need a PET scan to pick up things like that?  what would I look for if I had sub q's?  Lots to get your head around with all of this! 

I know there is a size limit to what they can pick up.  I have a derm appt again in a few weeks so I suppose I can ask then.

Thanks!

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

Login or register to post replies.

dutchhook's picture
Replies 5
Last reply 8/11/2011 - 1:39pm

Ok, so my wife went on the B RAF medication about 35 days ago. We saw a complete turnaround in energy, appetite and conditions starting in about 3 days. We went back to Chicago for her 28 day review, and tumors are shrinking, she's eating again, and did simple things like went to the grocery store, went to a family reunion and out to Applebees. I know it doesn't sound like much, but she hadn't done any of those things in months. She even drove her car for the first time.

As far as side effects, luckily, there haven't been many, like some others have reported here. She got a pretty good sunburn the other day, even after using 50 or 100 spf, hats, etc... but that is getting better now. She might be a little sore or tired, but we're not sure if it's the meds or not.

She did get 3 new spots, which they biopsied last Friday. We're pretty sure they're the squamous cell spots they told us about.

A new spot a few months ago was pretty depressing, now new spots are "Psssh, no big deal" (Knock on wood) We know this isn't a permanent cure, but she's going to make the most of her time here.

We are so happy with her local Onc, Dr Amatruda in Minnesota and her "study" Doctor, Dr Hallmeyer in Chicago. Teri got a big hug from Dr Hallmeyer last Friday, who was excited to hear of a(nother) success story.

As I'm writing this, I'm acutely aware of others who have not found an answer, temporary or permanent, and I still empathize with them. Especially those without the B RAF mutation.  So if it's possible, I'd like to share some good news with those who need it and share some hope for those who are still searching.

Steve & Teri

Login or register to post replies.

ShellyB's picture
Replies 4
Last reply 8/11/2011 - 4:25pm

hi,

i'm really keen to get as much information on ipi as possible. Would like to hear from anyone that was on it, and as to how it worked for them, or not. and what kind of side effects to expect. I am starting on Temodal next week for two cycles and then on ipi, as i'm in ireland, ipi cannot be administered as a first line drug, so i have to give Temodal a try, maybe this might work without ipi.

any info on this subject would be great, i had a look on the website but all that seems to stick out is the serious side effect, and serious they seem

 

thanks

michelle

Login or register to post replies.

Pam D's picture
Replies 2
Last reply 8/11/2011 - 7:49pm
Replies by: Pam D, DeniseK

Has anyone switched from traditional to pegylated interferon shots?

Login or register to post replies.

MariaH's picture
Replies 5
Last reply 8/11/2011 - 9:26pm

Dave started radiation on 8/9 due to the size of the tumors in his chest.  He will do 10 days of it prior to IL-2 on 8/29.  Has anybody had radiation to this area, and if so, what were your side effects?  So far he has said it's a "piece of cake".  Other than being a little tired and not much of an appetite, he feels good.  I'm just wondering what to watch for.

Thanks!

Login or register to post replies.

JerryfromFauq's picture
Replies 7
Last reply 8/11/2011 - 11:04am

A newcomer came   into chat  from Denver and needs help for a friend that has ocular melanoma that has gone to her lever.  She has failed TACE and Ipi.   She had allergic reaction to the yervoy so is on prednisone right now.  She has dropped weight and lost hair & appeqrs ok outwardly but has a new tumor and another one getting larger.

She needs help with reearch. 

I have some questions about what type mutations have been discovered in this type melanoma and what other trials, drugs might help. 

Thank you for helping this lady.  I hope to get to visit them when ic Colorado during the net couple of months.    My dial p is too slow and I am running   out of time to get reaedy to leave for Colorado.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

tricialeigh44's picture
Replies 4
Last reply 8/11/2011 - 10:07pm

My Mom has finished 3 rounds of IL2 in Buffalo and is now moving on to IPI. I am just wondering if we can somehow pool all of the melonama treatments available in Canada vs the US. What have been the most effective treatments.

My mum has stage 4 melanoma that has not spread past her lungs.

Thanks in advance

Tricia

Login or register to post replies.

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 8/11/2011 - 10:52am

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

Login or register to post replies.

Pages