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
KAF's picture
Replies 13
Last reply 7/31/2016 - 11:48pm
Replies by: FromPerth, Maria C, KAF, Anonymous, desertsun, Aaron, Lee Parlier, MoiraM

I've been on the Opdivo/Yervoy combo since Early June.  I have stage 4 melanoma (to liver) w/BRAF.  I did great on the first two doses. After the 2nd dose I became hyperthyroid after being hypothyroid for over 10 years. I loved all the energy and was feeling amazing.  I did fine  on my third dose last Tuesday.  On friday night I got a headache - not a big deal.  Was with teen daughter and old friends all day at the Mall of America which can give anyone a headache. Thought nothing of it.  Headache got worse over the weekend and by Monday nothing would make it better (advil, aleve, etc...) By yesterday i was in so much pain and couldn't take it anymore so I contacted my oncolgist.  Went in for MRI & labs today and within 15 minutes of the MRI being done (I wasnt' even home yet) she called to say my pituitary was swollen and I had to go on predinosone immediately and had to stop treatment. She didn't say whether that was permanent but that we would reevaluate once the swelling went own.  I'm so angry that after feeling so amazing after the 2nd dose that a week after my 3rd I'm now on steroids and in essence cancelling the treatment.  I'm trying not to be down but this is the first day I've cried.  I'm trying to not let my daughter see and told her that I'm a fighter and I don't let a headache get the best of me.  Has anyone had positive results after only 2 treatments and when did you know?  What are my options now?  Single dose Opdivo or Keytruda maybe?  BRAF drugs?

I'm a fighter and I hate feeling helpless.  I was prepared for the rashes (which I had one and Atarax helped) and the stomach issue (which never came).  I wasn't prepared for this one.

Any words of advice or encouragement are needed!!!

thank you all.

karen

Login or register to post replies.

JoshF's picture
Replies 11
Last reply 8/3/2016 - 5:02pm

Hi Everyone-

I received a call today from the Sr Clinical Leader at MD Anderson. Just to bring everyone up to speed I'm doing the Phase2 trial of Adoptive Cell Therapy with low dose IL-2 and IPI. They took the CD8+ cells from my blood about a month ago, collected Mart 1+ cells and then let them grow. She said everything looked great and earliest infusion date of September 1st. I'm nervous, excited...hopeful. I know there's not a lot of people out there who haven't done this so it makes me scared....but is there any guarantee in anything we do? I had complete response on ipi and went for a while before recurring in a big way after starting PD-1. Currently, I've had 2 doses of ipi and 3 days of radiation with 7 to go. My 3rd infusion of ipi is scheduled for Aug 12th which would make me start trial a bit later to meet washout. On top of all that I had a 4mm punch biopsy yesterday for a tiny bump on side of scalp. Love the anxiety waiting to see what that is...as derm told me, clinically I wouldn;t be concerned but it's you so... he was going to leave it...I asked him to take it so I can know. Now I have decisions...go with early date or wait for another dose of ipi....any thoughts? I know this seems like a no brainer but with stuff like this I start to lose logical thinking...indecision...one of biggest problems I've had to deal with in my life. Hope everyone is well...

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 7/29/2016 - 11:21am
Replies by: Anonymous

I sit here right now, post WLE, with my boot and wound vac on and have way too much time to think about my diagnosis.

My melanoma was found just after I started IVF. My mole was there a long time before we started IVF so I don't think it's related. We finished our IVF cycle and have 6 perfect embryos waiting for us. All of them are frozen and my doctor (Dr. Gastman at the Cleveland Clinic) recommends waiting 1 year to try and implant them.

I'm OK with waiting, it's not thrilling, but I'm OK with it. But, I've read a lot about women, even with early stages, deciding not to go ahead with pregnancies.

I know this topic has been brought up on the forum before but anyone have more recent information/ recommendations about getting pregnant after a melanoma diagnosis?

Thank you!

Alc

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 9
Last reply 7/29/2016 - 12:50pm
Replies by: Anonymous, desertsun, Polymath, Toby0987, RaquelP, Patrisa

I'm a stage 1 from 5 years ago.  had an annual physical the other day and LDH is slightly elevated 252 U/L.  I'm not sure if i should be worried or take any further action because of this with regard to the risk of it being melanoma as the cause.

Login or register to post replies.

Casitas1's picture
Replies 11
Last reply 7/31/2016 - 8:04am

Hello all, Long day yesterday after Pet ct, two Mri and Infusion of Keytruda. Was meeting with all my Drs. Oncologist, Surgeon and Radiologist to see what next step was going to be. I was nervous while in office waiting results. My Dr. (Rock Star Doc.) came in with all the rest and looked a little serious to me! They all smiled at once and said all clear your NED!!!! I started to cry and they informed me that the only other surgey i will need is cosmetic(facial) You know I have kind of gotten used to the scars, crooked lips neck scars etc. No more cutting for me for a long while.

I just wanted to thank all on this forum for the wealth of knowledge and support over the last 6 yrs. Even though I have only been posting a little while I am hoping NED sticks around a while and finds all of you!

Best, Paul

Login or register to post replies.

Lee Parlier's picture
Replies 14
Last reply 8/6/2016 - 10:14pm

While I am receiving my 4th and final dose of yervoy 10 mg I wanted to do something productive (and pass the time) so I will share as much information as I can. I have mentioned the archaic view that my Dr.'s have had with immunotherapies and their fears of the side effects. I started yervoy 8 weeks ago today under the guidance of a regular oncologist. It took a month for me to finally convince him that interferon was not an option and yervoy was my choice. I stress 2 things: 1) Regular oncologist 2) My choice I should have began my melanoma journey with a mel specialist and if I do have an option in treatment with a better chance at achieving NED, I have the final say.

I recently went to Duke Cancer Center and spoke with Dr. Salamas (mel specialist) and Dr Moscow (cancer Surgeon) I want to say it is a night and day difference in question and answer sessions to what I have been used to. I recently had a pet scan (mid yervoy treatment) which showed multiple tumors on liver etc.

Answers from Dr's Salamas and Moscow (prolly mel 101 for most) but hope there's some useful info for some.

1) What are these sobcutaneous nodules that popped up after starting yervoy?

ANSWER: They are in transit cancer that reacts to the treatment. (even though I did have a biopsy that showed some were) She said biopsies are not always reliable when dealing with this reaction and her experience showed most had some melanoma in the sub q tumors.

2) I started with 50 or so mel sub q's and I currently have 9 visible, is this a sign I am a responder?

ANSWER: I am caustiously optimistic that you are a responder based on the disappearance and shrinkage of the visible tumors. The chance of being a total responder in my experience is around 12% but you have signs of being at least a partial responder.

3) Does my chance of being a total responder increase since I will complete the 10 mg rather than the 3 mg doses? 

ANSWER: People are different but in my experience the benefit may increase the chances of being a responder by 5% with substantially more risk of toxic side effects. Sometimes more is not better.

4) My mid treatment pet scan showed new tumors etc. Is there any conclusion to be drawn?

ANSWER: Not really, The pet scan was showing activity but since I do not have a base line scan to compare it to it is impossible to say. My feeling is that the lesions were there before and are reacting to the treatment . I have seen pet scans light up and after treatment is through and it has been dead tumors that did react well to the treatment. I want a pet scan 2 months after your final treatment and we will determine if the tumors are the same, better or worse.If they are the same or better we set up the next pet scan and watch and wait. If they grow we move onto a different treatment and since you are stage 4 now, you have more options for treatments which have out performed yervoy in trials. With yervoy, there is usually a worsening before the treament kicks in even though everyone is different, most experience side effects and or inflammation from immunotherapies.

5) Would I benefit from T-VEC INJECTIONS IN THE SUB Q TUMORS? 

ANSWER: Stage 4 patient's are not eligible to receive t-vec injections and again, I am cautiously optimistic the positive reaction to the visual tumors with the yervoy that I wouldn't recommend it anyway. 

6) What kind of adjuavant therapy can I receive when I am NED (NOT IF)? 

ANSWER: There is no adjuvant therapy at stage 4. We will wait and see if the yervoy kicks in and will have a better idea after your next scans. Yervoy can take a while to rev up ypur immune system. Scans every 3 months to monitor. If you are worse, we move to something else. We have new trials daily at Duke and since yervoy was approved, we have other treatments that have shown to be more effective than yervoy.

 

There were some other things we discussed but suffice to say my experience with a specialist was at least more informative than I have been accustomed. I didn't hear all good news, didn't hear all bad but I did feel like I had some direction when I left.

Will I be a responder to yervoy? Don't know but glad I made the decision and wouldn't change it.

Would I begin my journey with a mel specialist if I had a time machine? Absoluteley and a surgical onc too. 

I would compare a regular oncologist and a melanoma specialist like this:

 

You are going to a big city you have never been to. You're nervous about losing your way. You miss a turn and you are lost and you are holdin your map quest directions as you drive. You may well find your way back on the right path but you spent a lot of valuable time lost.

You are going to a big city and turn on your GPS. You get future instructions on turns and what lane to get in. You make a wrong turn and the GPS gets you back on track. 

Maybe over simplifying but I thought of this as I was cussing my way out of Durham trying to find my way. My yervoy drip is beeping. Best of Luck to everone fighting. Can be scary, but it's not hopeless 

 

Lee Parlier

Login or register to post replies.

_Paul_'s picture
Replies 8
Last reply 8/3/2016 - 11:02pm

Hi All,

I took a break from the board for a few months to enjoy my NEDness. It was great. But now I am back because one of my the presumed dead tumors decided otherwise. My onc at the SCCA is talking to me about this trial: https://clinicaltrials.gov/show/NCT02410512. It combines ANTI-PD-L1 with MOXR0916, a humanized agonist anti-OX40 monoclonal antibody. I am trying to find out about the trial, like dosing schedule, toxicities, and the like. Is there anyone here on the trial that can share your experience?

Thanks - Paul

Login or register to post replies.

Ajwells's picture
Replies 3
Last reply 7/28/2016 - 7:09pm

It was a breeze. As expected. 

My exhaustion today is most likely caused by a 5 year old that was up all night with night terrors. :( But I am exhausted down to my bones, with a slight headache. Which I am again blaming on lack of sleep. 

But one question that I can't really find an answer on the intetwebs is, are swollen lymph nodes typical after an infusion?  I have two noticeable, not painful, lumps on the right side of my neck (my dissection was done on the left side of my neck). Since my doc said to call if I have as much as a hiccup (pretty much), I'm debating. Since it's only been a day and the first infusion doesn't typically cause any side effects I feel like I would just be a bother and written down as being a hypochondriac (kind of am). 

Is this a normal experience?  It makes sense since it is messing with my immune system. But that would also lead me to believe that my immune system is actively fighting something. Possibly a minor bug or something. No fever or signs of any illness. Just these two lumps hanging out on my neck saying "hey worry about me". 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

Login or register to post replies.

Shaneswife's picture
Replies 4
Last reply 7/29/2016 - 7:17am

Is LDH testing done prior to stage IV? My hubby had a brain mri fo which we haven't gotten the results from yet but the doctor did suddenly order an LDH test after the scan. Currently being restaged. Initially stage was 2b. Now with very large lymph nodes we know hes at least 3b.

Thanks in advance.

Janis

Login or register to post replies.

Chendo82's picture
Replies 2
Last reply 7/28/2016 - 10:23am
Replies by: caretothepeople, Janner

I was just diagnosed last Thursday and then seen my oncologist today. He diagnosed me at stage 1a. I asked multiple times about scans or lymph node biopsy and he told me none of the was needed: they would just do a wle and then he will see me in six months for a skin check. Is this normal procedure? I just don't want something missed and then later on find out it could have been caught early although with melanoma I know it's hard. Also my question for the more experienced. How do you love your lives normally and without worrying every little thing is melanoma spreading in your body? I have severe anxiety and I can't seem to quit thinking the worst. I have seen so many stories of stage 0 and 1 turning to stage three six months later. 

Login or register to post replies.

ccf478's picture
Replies 2
Last reply 7/27/2016 - 8:05pm
Replies by: ccf478, Chendo82

Hi everyone! I just had a biopsy done yesterday. It's my first one. I had a very small flat mole on my hand for years, but recently it started getting bigger and darker. She said she wasn't super worried about it but we would biopsy it just the same. My question is, do they take the entire mole during a biopsy? I just checked today after the swelling is down and there is a tiny piece of it left on the edge of the cut. Is that anything to worry about? I can attach a photo if anyone is curious. Thanks so much!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 7/27/2016 - 8:19pm
Replies by: Chendo82, Janner, btcedarr

I had a .6 melanoma removed and all secondary features were good except that i had 2mitosis per square.  Wle performed and no residual melanoma.  My doc says i have a good prognosis is this true.  They did not do a snlb because he said mels under .75 regardless of secondary features,  have a very high survival chance. I am a little confused and dont know what i should do if there is anything i can do.  

Login or register to post replies.

youngann's picture
Replies 8
Last reply 7/28/2016 - 6:02pm

In the hopes of getting a second opinion, at 10am today, I called Dr Schuchter’s office in Valley Forge and, after explaining my situation, I was told that she didn’t have an available appointment at that office until the end of August. It was suggested that I contact the Phila office and have my initial consult there followed by treatment at the Valley Forge location…sounds good, right?

I was transferred to U of P where, after explaining my situation again, a man took my name, D.O.B., email address and zip code before transferring me to another extension. Yet again, I explained my situation and asked to make an appointment with Dr. Schuchter.

I was asked if I’d spoken to a Nurse Navigator and I explained that I hadn’t been made aware of anyone’s job title but that I’d spoken to two different people before being transferred to her. It was then pointed out that, in order to make an appointment, I must first have it cleared by a Nurse Navigator, who would then decide if Dr. Schuchter would see me or if my case would be handed off to an assocciate.

I was then transferred to a Nurse Navigator.

Of course, she wasn’t available so I had to leave a message explaining my situation yet again. After several hours, the Nurse Navigator returned my call and told me that she was in the GI department and, although she knew Dr Schuchter very well, she had nothing to do with the Melanoma department. In fact, the Melanoma department doesn’t even use Nurse Navigators. I relayed the previous events to her and, after first giving me another number to call, she changed her mind and said that she’d make the call herself as she wanted to get to the bottom of the matter.

A couple of hours later, a Practice Manager, called me and apologized profusely for the run-around that I’d been given. He listened to my story, took my information and said that he’d transfer me to a lady who would be happy to schedule an appointment for me. He asked me to hold while he filled her in on what had happened and, again offered very sincere apologies.

It was now 5:15pm and, after seven hours, I was finally feeling as if someone cared, so of course I broke down, started blubbering and had to hand the phone to my husband. The bottom line is that I now have an appointment with one of the top Melanoma specialists in the area on Thursday 7/28 at 9am – provided that Jefferson Hospital will get my records to them in time.

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

Login or register to post replies.

ecc26's picture
Replies 17
Last reply 7/28/2016 - 5:12pm

Due for a 3rd round of Ipi/PD-1 on Monday with a pre-infusion appointment on Frday. Since the last infusion I've had multiple problems (gastric pain, back pain, constipation, etc). Some I can guess where they're coming from (opioids and constipation for example), but every time I seem to solve one problem, seems like I just cycle back to the beginning and start over. Like this morning, pretty confident I got the constipation taken care of (and haven't had any opioids for a few days), but my back still hurts, and while I was able to eat a light breakfast and lunch (cereal, 2 small cucumbers, and a handful of fresh berries) the gastric pain has started in again, which is part of what lead to my spending so much time in the hospital last week. I just don't know how much longer I can do this combo with everything I've got going on. I'm looking into a medical leave from work, but even that gets tricky considering I teach at a University and classes will start before too much longer. I'm the only one in the department who teaches my fall (or spring) courses- there isn't anyone to step in for me and I don't want to let the students down.

I've already failed both Ipi and PD-1, so I was never all that hopeful for the combo, but it seemed like my only option if the trial failed (which it did). I've felt so poorly that I haven't been able to research other options and I'm looking for some help.

As of now, I've been through every FDA approved option for stage 4. Does anyone out there have some suggestions for a next step? I've already looked into TIL and was declined.

-Eva

Login or register to post replies.

Pages