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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Rosegargala's picture
Replies 2
Last reply 5/31/2016 - 1:44pm

Has anyone heard of this. I went for my quarterly x ray and this is what theu found. I had to go Tuesday for a ct scan and still have no results. Could this be melanoma? Please just answer if you can. I am going out of my mind . Thank you so much

 

Roseyes

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/27/2016 - 7:00am
Replies by: MoiraM, Ed Williams

So I had a mole removed 10 days ago. I called up my doctos surgery and the results were not through. She offered to call the department who removed my mole and they told her the results are in but they have to wait for a consultant?

 

Is that bad? a Consultant?  then they will fax it through to my GP's tray..that surely doesn't sound good?

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landlover's picture
Replies 2
Last reply 5/26/2016 - 5:17pm
Replies by: Bradley75, jennunicorn

I got the results from my left neck dissection yesterday.  In addition to the original lymph node positive for melanoma there were three additional nodes positive- the largest of which measured 3 cm in greatest diameter! I don't know how that was hiding in my neck without my knowing.  Anyway I am glad to have it out.  My next step is meeting with the oncologist at the melanoma center at University of Michigan.  I take this to mean that I am stage 3c because in total 4 nodes were posititve?  The surgeon deferred to state it because she said the oncologist will go over all of it with me.

What treatments have others in my shoes done?  I am not ok with watch and wait.  I am thinking I will be eligable for Yervoy?  Have people had radiation for this?  I know that I am getting ahead of myself but I would like to meet the oncologist with some idea of what is reasonable.

Thanks,

Stage 3C, primary on neck, neck dissection May 2016.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2016 - 12:44pm
Replies by: jennunicorn

I was curious if any of you have this issue.  I have a good deal of moles, probably around 200 or so tiny ones and maybe 10-20 3mm-4mm moles.  I never went to the dermatologist in my childhood, teens or 20's.  Last year I went and started getting exams.  I've never had melanoma. No one in my family has ever had melanoma.  My doctor has taken 4 moles off of me so far.  He took one off my stomach that I had since my 20's.  I've had one mole come back the lowest level of dyspastic.  All the other moles were normal. All these removals have left what looks like burn marks on my body.  He had me come back for a 6month follow up.  He looked over my body and pointed out a mole on my temple. I have had this mole since I was a teen and never thought twice about it.   It has not grown over the years.  He wanted to biopsy this mole.  I stopped him and am trying to figure out other options.  I read that finding a doctor that uses a dermascope can eliminate uneeded biopsies?   I am getting tired of going to the doctor and having him cut things off..... Having my anxiety sky rocket for 3-4 weeks only to find out it was a notmal mole.  Am I doing the right thing ? 

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Lori Ann's picture
Replies 19
Last reply 6/3/2016 - 1:42pm
Replies by: Lori Ann, JohnA, CHD, Bubbles, mary1233, Ed Williams, Anonymous

I was diagnosed in December, 2014 with mucosal melanoma of the nasal cavity.  I had it surgically removed and did 6 weeks of radiation therapy.  In April, 2016, there was another tumor at the back of my nose.  Again, I had it surgically removed.  My oncologist gave me information on immunotherapy called Yurvoy.  Has anyone done this for nasal mucosal melanoma and how did it go?  I don't know whether radiation is an option and am meeting with my radiologist next week.  My oncologist didn't push for the immunotherapy.  I felt like he had to offer me something so that was it. 

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Replies by: desertsun, Jubes, Polymath

My husband is Stage IV (lung/liver mets) and after 13 cycles of Keytruda has developed a severe shortness of breath and blood pressure that has dropped dramatically. In reading Keytruda's patient information, side effects, etc. I am not finding anywhere that it states this could be a result of taking the Keytruda. His oncologist states that these symptoms are not related to the Keytruda. I tend to disagree with that statement at this time. His oncologist did schedule him for an echocardigram and a stress test. I also see on the FDA website where an individual can report side effects they are having while on meds...which I am going to do. Is there anyone else experiencing these side effects while on Keytruda?

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Aubreesmommy41's picture
Replies 4
Last reply 5/27/2016 - 11:35pm

After being diagnosed with melanoma in situ on my arm back in March, I've since had 6 moles removed 3 of which have been dysplastic Nevis requiring WLEs. I just came from the 2nd of them and the nurse spotted 2 more suspicious moles and made a note for the doctor to check at my next appointment in 2 weeks. It just never ends. I'm racking up huge bills and she acted like if I didn't pay some today they wouldn't see me. So now I'm thinking what happens when the bill IS out of control and they won't? Compared to almost everything I've read on this board my problems are small and I apologize. I guess my concerns are how do I deal with the never ending trips to the dermatologist, how do I keep the depression anxiety and worry at bay, and is this really manageable at the external level? My over zealous Doctor sent me for a pet scan in April which was clear so as shocked as I was to have to go thru that at stage 0 I am thankful. I guess the depression comes from knowing I have a ton of moles and a lot seem to be bad. How many more scars? And what if I miss one which gets worse? To stage 0 to 2 people how did you cope with the biopsies and the waiting and the bills etc? The depression and worry? I really want to be a big girl and deal with this with strength and grace but I just feel like hiding and crying.. Sorry just had to vent a little. Certainly no one in my real life who understands. 

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jade1111's picture
Replies 4
Last reply 5/26/2016 - 12:20pm

Hello

So my mom went to UCSF yesterday and based on what they described as a "super" low T cell count they were recommending combo. She was all set to continue with the Nivo/Epacadostat trial. We did not have much time to decide but decided to go with trail. However she woke up this morning stressed and wondering if she should do the combo. Big fear about the combo is side effects... She is 71 and in Ok health.. currently not very symptomatic. These decisions are rough. The trial is more involved in terms of time..

 

Anyway just looking for feedback on the combo and side effects. Have read some of other posts here.. as you know somtimes more information just feels better and looking for that AHA moment..

Thanks so much!!!

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rdg's picture
Replies 3
Last reply 5/28/2016 - 5:46pm
Replies by: desertsun

After 8 infusions of Opdivo, I am experiencing low blood pressure. The BMS product monograph makes no mention of low blood pressure as a side effect. Has anyone else experienced this?

Thank you

 

Richard

 

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Cdngirl's picture
Replies 12
Last reply 5/25/2016 - 9:37pm
Replies by: Janner, Cdngirl, jennunicorn

I'm sitting at my computer, freaking out somewhat, as I have an appointment with a dermatologist in 4 hours where I'll find out my biopsy results.

Three weeks ago, my doctor (also a minor cosmetic surgeon) took out two small moles that he thought were "questionable" to send for further testing. 

I wasn't too worried - I'd researched my 'ABCDE's', and these ones looked like two very dark small freckles - that's it, they certainly didn't fit any of the characteristics you're supposed to look for. The only reason my doctor even looked at them in the first place is I have tons of moles (50+?), and have never been checked, as I've never had any with any of the 'scary' characteristics. I thought I might as well ask, and even then he only looked at my arms where I have the most. So I was very surprised that he even thought they needed to come out.

In Canada, we can't make appointments with dermatologists - you need a doctor's referal. I cold called 8 dermatologists until I found one that had an opening that wasn't (no joke) four months away. Convinced a walk in clinic doctor to give me a referal (mine was on vacation). This was only at my paranoia of wanting a full body check. Lab results were not back at this point.

Five days ago my doctor phoned. He wanted to meet in person, and was proposing days. He's booked solid for three weeks and not taking appointments in general, so this is not good news. I meet with him tomorrow, but I convinced his office to share the lab resuts with the dermantologist who just by sheer coincidence I have booked for today.

As I type this, it doesn't look good - or they would have not bothered to even phone in the first place. 

I could use some practical advice on what to ask, how to keep my head on, or any other wisdom you have. Please no power of prayer or positive thinking comments. Help? Thank you.

 

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knittingirl's picture
Replies 3
Last reply 5/25/2016 - 6:20pm
Replies by: jenny22, LaurieGayle, BrianP

3 weeks ago I had a check-up PET/CT scan .My manubrium and pubic bone showed a high SUV ( 9.4 and 8.6), I had a chest MRI that confirmed that it was  malignant. My cancer was back despite I was successfull last fall with ipi/nivo combo. The doctor wanted me to have a pubic bone biopsy just to be sure before starting any new treatment. It was quite unpleasant and painful ,but it was worth it as it came back negative: no melanoma in my bones. It's an inflammation that triggers the high activity on my scan. Doctor thinks that my immune system (stimulated with ipi/nivo ) is now attacking my bone. I have hypothyroidism and during winter I had severe colitis and high level of liver enzyms.

As I have no pain, doc doesn't want me to take any drug( prednisone......I hate this drug) for my bone. I will see him in July and go through an other PET/CT sacn in August.

I was supposed to start a maintenance phase of nivo or keytruda but as my body is still reacting to nivo/ipi, it is going to be delayed for the future.

Do not hesitate toask for a biopsy. Even if it not pleasant, sometimes the outcome can be positive.

Best,

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JoshF's picture
Replies 21
Last reply 5/26/2016 - 1:14am

Ok MPIP Family...here's where I'm at.

CT Scan on Friday...no results but surgeon wanted better visual of liver in the event something is there that he needs to go after. As he said...he'll go cherry picking but he likes to know where to start. He also is going to do an intra op ultrasound.

I did colonoscopy today to see if tumor had invaded large intestine as it's basically pushing up against it. I wasn't expecting anything right after but as soon as I was "with it" they told me that everything looked healthy and no invasion. Though he said that tumor can be attached to outside...but this test wouldn't confirm that...surgery will. GI doc said, this surgical onc is very thorough.

So surgery is Friday. I'm nervous. It's a big tumor that grew in 6 months. That really scares the crap out of me...is this crap just running rampant through my body???? Anyway, so as I'm trying to compartementalize everything....I've been looking at options. It's funny how the docs now don;t want to tell me what they feel is best. Anyway my thought process is obviously getting a complete response but if not keeping at bay with the hopes that something better comes along for all of us...

I remember a long time ago Charile S (I hope you read this buddy) said that taking the easy path isn't the best option all the time. I believe he was referring to IL-2 which I did...22 of the 24 planned bags.

I've read conflicting info on this Adoptive Cell Therapy. Not TIL...it's similar in all aspects except they draw T Cells from blood vs. tumor. I have this option local....or I can try to get into NIH or go to MD Anderson....not easy but I tend to agree with Charlie, I'll take the tough path for results. Are there better options or variances out there that are better.

Ipi combo wth Cavatak. Our dear friend who I love dearly, Celeste posted info on this as well as other trials including TIL etc... My attraction to this is that I respinded to ipi in past. Are chances good that I will again?? Do I save this if ACT doesn't work?

Current ONC said Ipi/Nivo even though nivo didn;t work...could have synergistic effect but said this would be last option if nothing else worked.

Anything else out there??? What about this IL-15 I've heard about... Not getting ahead of myself...just preparing to jump into next compartment after Friday.Love you all!!!

Josh

 

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

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JoshF's picture
Replies 11
Last reply 5/25/2016 - 3:40pm

So just a quick question for some of you. I should go search in Celeste's blog but I'm curious about what others know or have heard. Reading Kerri's post about Jake made me think more about it. If Keytruda failed Jake and maybe others who will see this, does that mean that Nivo most likely wouldn't work? I understand they're same class of drugs but there has to be a slight difference otherwise how would an oncologist chose? Loyalty to a specific pharma company? Just curious as there has to be a slight difference that could make a difference in response for someone?

Ok now I'm going to go dig in Celeste's blog.

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

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Brian_D's picture
Replies 8
Last reply 5/25/2016 - 11:03pm

I am curious to know if anyone has any experience taking Adderall or any other type of stimulant during treatment to combat fatigue and lack of concentration.  I am currently on tafinlar and mekinist, and undergoing radiation of the spine and whole brain radiation.  Fatigue and the inability to focus is really the only side effect I am experiencing.  I see my doctor tomorrow and would like to discuss with her.  I first wanted to know if anyone had any experience with this.  I started a new job about a month ago and would like to plow ahead and continue working.  Sitting around all day is just not an appealing option for me.  I appreciate the anticipated responses.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/25/2016 - 2:19am
Replies by: Anonymous

My husband completed 12 weeks of Opdivo and had another PET scan.  The results showed activity in left groin lymph node but dr right now is suggesting its nothing for now.  So for now theres no more scheduled treatments and we will wait to have another scan in August. Very hopeful at this point.

Hope everyone is doing well. God Bless    

Bin

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