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
doro's picture
Replies 8
Last reply 2/6/2013 - 11:15pm

Hi everyone,

I am posting after a couple months of lurking to say hello and ask for any info/advice people have about a potential course of treatment for my father. Apologies in advance for a lengthy post, I just want to give a clear explanation of the situation.

My father has been diagnosed as Stage III or maybe IV with a primary site on top of his head and a few positive nodes on one side of his neck and one positive node on the other side. We have met with several oncologists (we live in the San Francisco Bay Area so are lucky to have multiple options nearby) over the last several weeks and have gotten different opinions.  

Our current question has to do with BRAF medication (Dad has the mutation). One oncologist indicated he might make the case that Dad’s cancer is Stage IV, given that he had infected nodes on both sides of his neck (which he felt could be argued as more than regional spread). If Dad is Stage IV, he can access Zelboraf without having to go into a trial. However, from reading online it seems like people try to wait to do BRAF treatment until it is absolutely necessary. The oncologist seems to think that Zelboraf may be able to more successfully fight microscopic cancer (similar to radiation?), but it does not appear any studies have been completed to make this claim. The lesser side effects of Zelboraf compared to interferon are obviously attractive; while my father is a healthy, active man in his late sixties, the point has been made that interferon can be quite difficult to sustain for older adults. So the question is: any information or advice on taking Zelboraf at this point?

Really, any thoughts about the situation would be appreciated. As you all know too well, entering the melanoma world is a shock. It’s been encouraging for my family to have found this board and seen valuable information and support provided by its members. We are wishing all of you the best!

Thanks much.

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 2/7/2013 - 2:21am

Just finished more scans.  No one is ever going to use the "C" word, but I am pretty much there.  It is a nice problem when the docs don't know what kind of follow up scans to do since I have become so boring.  Other than tearing my other ACL which ironically started my mel journey 11 years ago, I am doing well.  Emma is almost 5 and Jade almost 8.  I can't believe it has been 2.5 years since undergoing IL-2.

My onc tells me Queen's here on Oahu is about to become a melanoma center as well.  Dr. Charles Balch himself will be meeting with the Queen's cancer center this week.  They will be starting MEK/Braf combo trials that have regular biopsies of monitored masses over time to see how the genetics change over treatment.  It is the next step in trying to determine how quickly tumors develop resistance and how they can in the future pulse therapy to delay escape pathways.  How cool is that?!

I am now full-time permanent with the HI Dept. of Agriculture as a veterinary medical officer after almost 6 years.  I love my job and work with wonderful people.  I am also in the process of becoming a full-fledged sheep farmer.  Unfortunately my 14 month Anatollian Shepard x Akbash developed a mass around her windpipe.  I biopsied it this weekend and am awaiting results.  I know it is cancer, just what kind, and can I put her into a long term remission......

You know you are a survivor of Stage IV when you once again begin to worry about retirement, putting the kids through school, gaining weight etc.  The time in limbo though was pure hell.  Anyone about to undergo IL-2 I am happy to talk with.  with all the new therapies it seems IL-2 is being forgotten or worse not recommended because of its toxicity.  It still is one of the very few therapies to date that can promise a small subset of patients a durable and permanent remission.  I am one of those patients.  I am happy to say I will probably die from old age, or something stupid.  I am not planning on showing up as a story on 100 ways to die, so I think old age and bad genes for heart Dz will eventually take me.

Please don't discount IL-2.  It is brutal but has a quick recovery.  Who knows, it may even enhance some of these other immune modulators even if not a complete responder.

I know on my CT scan, my thymus is still activated thanks to IL-2.  Way to go natural killer cells!!!!!!!

Take care all.

I hope to be able to post as Kim K, but this stupid site won't let me log in as Kim K saying it is already taken :(..... I am not about to reset all my patnet etc. and wish I knew how to reset my password and e-mail without having to give up Kim K.  If anyone knows how, please let me know.

kimkdvm719@gmail.com

Aloha all.

PROUD TO BE AN OFFICIAL OLD TIMER!!!!!

Login or register to post replies.

Marcia1's picture
Replies 10
Last reply 2/6/2013 - 11:06pm
Replies by: NYKaren, Marcia1, Swanee, POW, kylez

My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma - started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  She definitely wants to continue.   Thank you for any information.

Login or register to post replies.

My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma - started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  Thank you for any information.

Login or register to post replies.

bikerwife's picture
Replies 3
Last reply 2/6/2013 - 5:24am

Lynn had gamma knife Monday when doing scan they found not 12 but 22 mets. They treated him for 4 hour but he could not lay on table any longer so they will do it again on February 18. most were pin head size. 

scan for body next week

Lynn said he will not stop fighting 

What God leads u to he will. Lead you through

Login or register to post replies.

bioguy's picture
Replies 13
Last reply 2/12/2013 - 9:35am
Replies by: kbc123, bioguy, lou2, Anonymous, POW, Gene_S, Tina D, Janner

Hi All.  I'm new to the site.  I'm a 40 y/o white male with fair skin.  I saw my primary care doc for a lesions on my chest.  It's certainly atypical for melanoma presentation, but it has enlarged over the past 18 months, and started to appear dry and bleed in spots.  It appears like a slightly raised, reddish, mole-like.  I didn't pay it much attention at first, but after my primary care suggested a see a dermatologist for a biopsy, I'm really nervous.  I didn't sleep at all last night, so on top of the anxiety, I'm exhausted. 

Any advice from you guys?  I've always thought that by the time the mole/lesion is bleeding that it's quite advanced and there's not much that can be done.  Any help you all can give would be so greatly appreciated. 

 

Thanks so much.

Login or register to post replies.

Janet Lee's picture
Replies 4
Last reply 2/5/2013 - 11:43am

My husband was first diagnosed with Stage IV Melanoma this past January 18. He started radiation for pelvic/lower back pain on January 25. Cyberknife for brain lesion was supposed to start soon after. His "mask" was made around January 21st, another MRI was done of the brain on January 27, and the "mapping" was completed for the cyberknife on January 28/29. The radiation oncologist said the cyberknife would be done last week or today (Mon 2/4).

Tonight the radiation oncology department informed us that the cyberknife can't be done until next week because they are short-handed.

I am so upset I can't even think. Don's brain tumor is asymptomatic at this time, but it was my understanding that we needed to get this done asap. Each day is a delay in his treatment. Each day that the brain tumor is not addressed is one more day that makes him ineligible for any clinical trials.

If I'm overreacting, please tell me. We are coordinating his care with Dana Farber, but doing the radiation at a nearby hospital. Should I call the onc at Dana Farber?

Thanks!

Janet

Login or register to post replies.

Angela C's picture
Replies 7
Last reply 2/5/2013 - 7:23pm

I got good news recently and wanted to share for those who might be interested. I am on the trial at Mass Gen in Boston that combines MEK162 and BKM120. I had my first CT scan last week and after less than two months on the drugs I have 16% shrinkage!! All tumors have responded. This is the first treatment in over two years that as been able to shrink my stubborn adrenal gland tumor. I am very excited and encouraged by the results, but really don't know what to expect long term. Hopefully more shrinkage! Now I have a brain MRI tomorrow and hope that things are going to be okay there. It's my follow up scan to the SRS I had in October.

Just wanted to share the good news!

~Angela

Login or register to post replies.

NYKaren's picture
Replies 0

Hi Gene,

I posted an apology to you in the Vitamin D thread.  Then I went to your profile to message you that I'm terribly sorry about being rude to you,

and there's no "contact" link on your profile.  Not always sure how this stuff works. So please go look at that post :)

karen

Don't Stop Believing

Login or register to post replies.

NYKaren's picture
Replies 2
Last reply 2/4/2013 - 11:18pm
Replies by: Swanee, Gene_S

Hi Gene,

I posted an apology to you in the Vitamin D thread.  Then I went to your profile to message you that I'm terribly sorry about being rude to you,

and there's no "contact" link on your profile.  Not always sure how this stuff works. So please go look at that post :)

karen

Don't Stop Believing

Login or register to post replies.

mama1960's picture
Replies 5
Last reply 2/5/2013 - 7:31pm

Hi, everyone. I do a pelvic and abdominal CAT scan tomorrow. Results a week later. First scan since July when a spot showed up in right groin lymph node. Had been doing scans since 2008 with no issues. I had really convinced myself that I had had beat it, so was in a state of shock when it came back abnormal. Had a full dissection done at M D Anderson. They took 28 nodes and only one was hot. I feel like that is pretty good, however it was rocking around in my body for 4 years. So, right now I really am torn as to what I expect. Hate Scan Week!

It is what it is.

Login or register to post replies.

buffcody's picture
Replies 2
Last reply 2/5/2013 - 12:43pm
Replies by: Tina D, awillett1991

My oncologist at the University of Michigan, Dr. Lao, read and reported Thursday on the scans done  the previous week.  My brain MRI showed the two tumors that had been shrunk in December through SRS were stable, with one of them smaller, though the other did show some hematoma.  The PET scan was clear exepct for a suspected met in the left buttock.  Recommendation was to watch and wait to see if this very small supposed tumor grows with scans taken again in 7 weeks.  Dr. Paul Chapman at Sloane, whom i have been seeing for second opinions and saw again this morning, agrees but has more doubts that what is showing up on the scan in my butt is actually a met.  He recommends if it grows to SRS it.  It's very nice to think I have seven weeks to live and not be treated, just having finished my ipi infusions four weeks ago.  Side effects from that, fatigue, rash, and itching, have quieted down but are still with me every other day or so.  Never quite sure what is going to pop up when.  But Dr. Lao ranks me among his "best" 5% patients on ipi. He means manageable, I think.  No way you know the results yet.  Just know things have been quiet.

Login or register to post replies.

POW's picture
Replies 4
Last reply 2/4/2013 - 10:38pm
Replies by: DeniseK, POW, awillett1991

My brother's oncologist at Moffitt recently told us that they are no longer accepting patients into their anti-PD1 trials unless and until the patient has tried and failed ipi (Yervoy). Has anyone else heard this? Does anyone know why this should be the case? On the face of it, it seems to be a very odd requirement.

Login or register to post replies.

Don (Stage IV) and I have decided on treatment at Dana Farber. He will finish radiation in 6 more treatments (to help alleviate debilitating pain in back and pelvis) and will also undergo cyberknife for brain lesion. He tested position for B-Raff, so the DFCI oncologist is recommending he start on Zelboraf as soon as he finishes the radiation. She says Zelboraf works fast, and he will stay on it as long as it continues to work. If and when it stops working, she says we will consider Yervoy (Ipi).

Would love to hear what your experiences have been if you've had similar treatments. His disease is widespread (along spine, adrenal gland, some lung nodules).

What kind of side effects should we expect from the Zelboraf? Would it be feasible for us to leave the Boston area to spend a few weeks in our condo in Florida, or should we stick close to DFCI?

Has anyone also had any experience with Zometa (for bones)? Don's pelvis has been compromised by the tumors, and they want him to have this drug for bone strength. A nasty potential side effect has to do with jaw necrosis, which is unstoppable if it starts, which can destroy the entire jaw.

Thank you all for your continued willingness to share your knowledge, experience, and love.

Janet

Login or register to post replies.

Jinx's picture
Replies 7
Last reply 2/8/2013 - 11:52am

 

I had my first Yervoy infusion on Friday (2/1) and actually had a side effect not from the Yervoy but from the Benadryl they gave me pryer to the infussion. Belive it or not I have never taken Benadryl in any form. Aside from this cancer, I really have never been one to get sick. The last time I was sick was about 15 years ago when there was a bad flu hitting.
Anyway...I started feeling very strange and felt like I was going to pass out, but not really dizzy. It was like a hyper anxioty about something about to happen, alone with a feeling I was going to pass out. My blood pressure dropped from 120/72 to 88/65. They opended the iv and flushed my vein. It fianlly went away after about ten minutes. 
Anyone else here have this happen? If so, did they use something other than Benadryl before the next infusion/

The only side effect I had from the Yervoy (if it really was one) was a few back to back adrenalin head rushes later that night. I was a little bit slow to get going the next day, but have felt fine since.

Jerry

Login or register to post replies.

Pages