Home Forums Melanoma Diagnosis: Stage IV Just diagnosed stage IV single mom

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  • #21095
    Mom2Becca
    Participant

    My daughter Becca was diagnosed this past week with stage IV melanoma which has metastasized and is inoperable. Obviously, we are reeling but our faith is strong and she knows the end will be good, no matter what.

    Six and a half years ago Becca had a mole removed from her back. It was a superficial spreading type of melanoma (sounded pretty innocuous to us) and lymph nodes showed no cancer cells. As a routine follow up, she has had a chest X-ray each year, she had one on December 3, 2012, but never received a call. Last month she went to the doctor with an illness and was asked what she found out when she followed up on the nodule which was picked up on the X-ray. That was the first she had been made aware of it. A subsequent bronchoscopy, CT scan, PET scan and biopsy resulted in the diagnosis.

    Becca lives in New York City and is a single mom to Brooklyn, age 9 and her extended family all lives in the Midwest. This is so surreal since she feels physically fine. As you can imagine, we have so many questions. How will this progress? Is there any value in pursuing treatment? So many questions, not to mention the legal issues such as custody of our granddaughter, a will, advance directive, etc and the logistical issues. Of course, the emotional aspect for all of us is huge.

    I would welcome any advice or insight. She should find out tomorrow if she will be accepted by Sloan Kettering as a patient but is there any point in going that route?

    #59535
    TreeFrog
    Participant

    Hi Mom2Becca,

    I can only imagine how upset you are, but take heart. There are promising treatments now for Stage IV, and the fact that Becca is fairly young and feels entirely well makes her an ideal candidate for treatment.

    Others with more knowledge of Stage IV will chime in here. I just wanted to pop in and say there’s lots of hope, and Becca may have a few good options to choose from.

    Best wishes,

    ~Wendy

    #59536
    Anonymous
    Guest

    I’m so terribly sorry to hear about this. I get particularly upset when parents with young kids get diagnosed.

    However, as your faith probably is telling you, there is certainly hope.

    There are absolutely some therapies and trials out there which have the potential for a significant response for Becca. Go after them! But it will require some intense (time and emotional intensity) work.

    Good, she does need to make an appointment ASAP with the melanoma team at Sloan-Kettering there in NY. They have a tremendous melanoma staff and many clinical trials and yes, Becca first needs to become a patient at Sloan. Then immediatley that same day, ask for an appointment with “the next available attending oncologist”. This will get you in the melanoma door as soon as possible. Make it clear during your conversations that her goal is to participate in some of the clinical trials for melanoma there at Sloan-Kettring. And they have several great ones now.

    Specifically, she needs to be tested for the BRAF and NRAS (plus any others they suggest)genetic mutations in her tumor. Also inquire about PD1, IPI, MEK and TIL therapies.

    You’re at the beginning of this rollercoaster journey and it’s more than a bit like drinking from a fire hose at first, but have faith, trust (but verify here) what the medical guys tell you, be patient, be aggressive and be kind to yourselves.

    Check back and give us updates regularly. We’re here and you’re not alone.

    Jeff

    #59537
    jmmm
    Participant

    My husband is young (37 at diagnosis) and when he was first dx at stage IV, we went straight to the Internet to research…Don’t do that! Or if you do, make sure everything you read is from 2011 or newer. There is hope for stage IV patients…there are multiple new treatments and several in trials that are extending patients lives. It’s not easy…my husband has been through a small bowel resection, a thorocotamy, a craniotomy, gamma knife, Yervoy (Ipi) and Zelboraf. He was originally diagnosed (with stage IV) in January 2011 and is still here. In fact he has been NED for almost a year:). Find a melanoma specialist and start learning all you can. Melanoma is deadly, but there are many patients out here that are living years with a stage IV diagnosis. Just don’t give up or take No for an answer. I’ve had to advocate again and again for him…fighting doctors and the insurance company, but he’s received what he has needed and is living life to it’s fullest. She’ll definitely need help…there were times when my mom practically lived at our house helping with our children, while I was at the hospital with him. She’ll have to learn to ask for help..a very hard thing to do…I know:). Try to. Be as honest as possible with her daughter. Our kids were 7, 8, and 10 when my husband was diagnosed. At first we tried to hide all the details from them….they saw right through us. We are open and honest with them. They know they can ask any questions they want and we’ll try to answer them the best we can. They trust us that we aren’t hiding anything fro them. Kids are amazingly resilient…they learn to just roll with the punches and take everything in stride.

    #59538
    erinmay22
    Participant

    So sorry to hear about your daughter! As Jeff mentioned – make sure she gets an appointment with a melanoma specialist ASAP. I have been a patient at Sloan Kettering for 2+ years (being stage 4 for most of that time also). I can relate with the living in the NYC area but having family in the midwest (my whole family lives in Minnesota).

    It is absolutely worth pursuring treatment! There so many new treatments out there. Like they said – get her tested for braf mutation. I have done Zelboraf, Ipi (Yervoy) and now in a clinical trial at Sloan for the anti-pd1. So LOTs of things out there to try!

    Lots of good resources and knowledge here! Thoughts and prayers out to you and your daughter!

    Erin

    http://www.melanomaandthecity.blogspot.com

    #59539
    Mom2Becca
    Participant

    Thank you all so very much. I can see right away this forum is going to be a blessing. I don’t know any of the “language of melanoma” yet but I’m sure my vocabulary will be enlarged greatly in the months to come.

    Becca had her first consult with an oncologist on Friday and they did labs to check her BRAF? and other indicators. She also had a brain MRI that day and we will get the results tomorrow. The PET scan did not show cancer anywhere outside her lungs but there is a discoloration on her eyeball that is a concern. We’ve been told that retinal melanoma “mets” very quickly, if there is involvement there.

    It’s been frustrating for Becca to be going through all these diagnostic tests, we are so eager to start battling this monster. Of course, the 2 month + delay in finding out about the possibility of problem is another source of frustration.

    She has been open and honest with Brooklyn and will continue to be but, wow, what a difficult thing for both of them (all of us).

    Thanks again for your encouragement.

    #59540
    PatW
    Participant

    Whoa there, Mom! Slow down. Take a few deep breaths. Yes, melanoma is a serious disease and may some day prove fatal to Becca. Maybe. Someday. But please don’t call the undertaker yet! Just in the last 3 or 4 years, a number of new and more effective melanoma treatments have been developed that give us all a lot of reasons to be hopeful and more new treatments are in the pipeline.

    Becca will probably have a LOT of doctors’ appointment to go to during the next 2-4 months. She will have to do a LOT of research about her treatment options and how they might impact her life and about how to pay for the treatments. Depending on the treatment she gets, she may have days where she feels really exhausted and feverish or have other side effects that will make it difficult for her to cook or attend to her child. So if anyone in the family can be there, physically, for some or all of the next few months, that would be a blessing to her. If that is not possible, a lot of research, appointments, insurance/medicaid snafus, etc can be handled from anywhere via telephone and Internet.

    Battling melanoma to a standstill or even to a complete victory is a marathon, not a sprint. Dividing the labor among several caring adults can make all the difference. It sounds like having you on her side will be a great start!

    #59541
    zephyr66
    Participant

    I’m so sorry about your daughter. yes, i agree with the others… definitely hope! my partner amy also has inoperable tumors and that has been almost a year and a half since we found out. i agree with jeff to go to a center that is reputable and get tested for the mutations. and there are the other treatments such as IPI, PD1 trials, TIL, etc. once you find out what you’re eligible for, i would come back to the forum and throw your options out there to get feedback about things such as side effects, how likelihood of response, typical duration, speed of response, etc. it’s a huge learning curve in education and not a course you signed up for, but you’ll feel so much better once you know what is out there. this is such a great place for info. glad you found your way here.

    #59542
    Mom2Becca
    Participant

    Thank you both so much. Yes, it certainly is easy to get a ways down the road quickly.

    The brain MRI Becca had on Friday showed no melanoma so we’re thankful for that but were disappointed to hear surgery on the cancer in her lungs is inoperable, at least according to the oncologist she saw. It has spread to her left lung now. We were also sorry to be told it would take 10 business days for the tests to be done on the blood drawn that day. It was sent to Next Generation Sequencing in California where they will check for the BRAF mutation and whatever else it is they need to know. I feel like in in kindergarten talking about these things. When I expressed dismay about the 10 business days Becca explained that the doctors told her that it’s more important getting the right team assembled and battle plan drawn than starting treatment immediately. They said the time would be more than made up for when it does begin.

    Becca is beginning to experience great fatigue, we’re not sure if it’s the disease or just the exhaustion from all of the events of the past three weeks catching up with her, not to mention the mental and emotional strain.

    She still has not heard from Memorial Sloan-Kettering about whether or not they will accept her but she’s also in discussion with the Kansas University Medical Center in Kansas City.

    Thanks again for the advice and encouragement.

    Judy

    #59543
    jmmm
    Participant

    The BRaf mutation can only be found in a tumor sample. I’m assuming they biopsied her lung tumor to get a sample (and an original diagnosis)??? Blood work will not be able to tell that. Not know and just waiting is very difficult. Please make sure she is being seen by a melanoma specialist…it is vital. The new treatments and trials have lots of side effects that only someone experienced should be handling.

    #59544
    NYKaren
    Participant

    Hi there,you’ve gotten lots of good advice here. I would strongly suggest you keep calling Sloan every day until you get an appointment. I don’t know what tissue was used for the BRAF test, but I know for a fact that the pathologist can do the test right there at Sloan. I had 2 more of my satellite metasteses tested this past Wednesday and my doc called me today with results.

    Yes indeed your daughter should be treated… WHERE she is treated can make a huge difference. Please keep us posted.

    All the best,

    Karen

    #59545
    rochelle
    Participant

    Judy,

    I imagine you must feel bombarded with extremely knowledgeable responses. It’s great your daughter has you and the rest of her family for support…

    I really don’t have much to add to everyone’s input but I would like to emphasize a couple of suggestions…it is vital Becca be seen at a center of excellence…a designation I believe given to cancer centers by the NIH (please help me out here Catherine if I’m misspeaking). There are many reasons for seeking treatment at these facilities, but most important because that is where Becca will receive cutting edge treatment and also have access to the latest trials. Please don’t let the word trials trouble you…many people perceive trials as being end of the road treatment, but in the world of cancer…most trials are the beginning to possible long term management and sometimes, even a cure.

    Everyone loves the centers where they are being treated, and I do as well. So, I would like to suggest, if Becca wants to consider this, that she might want to give NYU a call. I really dislike the word “patient” so let me just say I have been a “recipient” of care there for the better part of 5 years. Dr. Anna Pavlick and her team are a force to be reckoned with… and let me also add…the docs in these centers that have the latest trials are not afraid to say “you know, I don’t have such and such trial here but I know they openings at Sloane or Yale or Mass General…let me give them a call…”

    And finally…you may have already done this, but a very important tip on the logistics of your journey…make sure…I repeat…make sure you get a copy of every test, scan and bloodwork that Becca has. Start a binder…oldest test on the bottom, latest on top…because somewhere down the line, she/you will need this information. You never know if she may seek treatment elsewhere or there may be times when she needs to see a doctor for a totally unrelated cancer issue. They do appreciate having a clear picture of what kind of treatment the patient is receiving. That folder will come in handy.

    All the best to Becca and to you…as you may have already realized, the people on this site are a wealth of information and experience…take what you need from us and don’t be afraid to ask any question…collectively, we can help :)

    Warm regards,

    Martha

    #59546
    Mom2Becca
    Participant

    Thanks, good to know about the BRAF mutation. She had a biopsy, too, so I’m assuming they sent the right things to be tested but I’ll double check with Becca.

    Today she found out the insurance company approved her for a consultation at Sloan-Kettering but is having trouble getting information sent from Columbia Presbyterian where initial diagnostic tests were done (CT scan, PET scan, biopsy, brain MRI, etc. to MSK. Interestingly, the oncologist who saw her at CP on Friday said they only see 3-5 cases of melanoma a year there compared to probably 3-5 cases an hour at MSK. CP is definitely not where she should be but the doctors there have been very diligent and focused on getting the diagnosis.

    #59547
    Laurielala55
    Participant

    Hi Becca’s mom!

    The team at MSK is terrific! My husband was diagnosed out of nowhere last April. Never were able to find a primary site and in fact he has always been diligent with his diet, exercise and yearly visits to a dermatologist to make sure he never got melanoma. I am a patient of a local hemotologist/oncologist who was instrumental in getting him to Sloan and into the PD-1 trial. I cannot tell you that this journey has been an easy one but the support from the people on these forums has been invaluable. I don’t often post but at 2am when it is difficult to sleep I log in and read the many posts and realize that there is hope. The hardest lesson for me so far was to learn that I am human and it is impossible to take care of someone without taking care of myself! It sounds like you are heading in the right direction. Do whatever it takes to get the best care for your daughter! Hope to hear good news in the future!

    #59548
    BeccaLovesBrooklyn
    Participant

    Hello Mom!

    Thank you for finding this great resource and for loving me so much. I appreciate you and can only imagine that is going to grow along very much over the next several months.

    I just got confirmation from Memorial-Sloan Kettering in NYC that I have my 1st consultation on April 15th with Dr. Paul Chapman who is the lead on this article (Improved Survival with Vemurafenib in Melanoma with BRAF V600E Mutation, The New England Journal of Medicine, 30 June 2011). http://www.ncbi.nlm.nih.gov/pubmed/21639808

    I called back and asked if it could be any earlier and they said April 8th at 4 pm.

    In the meantime, Columbia-Presbyterian is sending my stained and unstained slides to Genoptix in Carlsbad, CA for “next generation sequencing” of my DNA tissue. They will test for BRAF and C-KIT, among other things.

    http://www.genoptix.com/index.html

    For those who would like to learn more about me, my daughter, Brooklyn (9) or my wonderful mom (Mom2Becca), I have a CaringBridge site at http://www.caringbridge.org/visit/beccalovesbrooklyn

    I had a cutaneous melanoma removed Dec. 2006 and received no therapy afterwards. As Mom explained, it was upon an annual chest x-ray that a “nodule” was found in my lower right lung in Dec. 2012. Through chest CT, PET scans, MRI (brain) and biopsy of the tumor found in my right lung, I have been diagnosed as Stage IV and I just turned 43 in January. I have A LOT of living yet to do and can tell I am going to be needing so much of the wisdom you all have to offer. I thank you in advance.

    Blessings abound!

    Becca (NYC)

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