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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snow white's picture
Replies 1
Last reply 9/30/2016 - 1:05am
Replies by: jennunicorn

I am just wondering if placing a Port O Cath is normal when undergoing treatment.  I know when I was going through chemo 4 years ago, I had 18 treatments and had a Port that made things much easier.

Is this also the protocall for Melanoma treatment?

Jennifer

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Ross's.Mom's picture
Replies 1
Last reply 9/30/2016 - 1:00am
Replies by: jennunicorn

Our 11-year old son, Ross, was diagnosed on 9/14/16 with melanoma on his ear. His slide has been seen at Mayo and UCSF and he is currently being treated at University of Iowa Children's Hospital. We met with Dr.Mo today- melanoma specialist in Iowa. Here's what I know from path report: Breslows thickness 2.4mm, Clark's level IV, mitotic index 5/mm(2), margins positive (melanoma focally present at deep margins), stage T3a. He is scheduled for wide excision and SLNB this coming Tuesday, 10/4. I'm deeply concerned about the lack of research on melanoma in children. Dr. Mo said about 10 cases/year in the US- that cannot be right!!?? We're still sort of in disbelief. Can this be happening??

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Maria C's picture
Replies 2
Last reply 9/30/2016 - 3:18am
Replies by: Bubbles, Casitas1

Hi all,

Yesterday I had my third infusion of pembro and am dead tired today, with an achy body. We restarted immunotherapy after a summer (June - August) dealing with brain mets recurrences that have left my scalp very sore and tender from the radiation. I've also had all 4 ipi-nivo infusions last year.

What confuses me is trying to identify what are side effects from the immunotherapy and what are just "normal" health issues. For instance, I've had hot & cold flashes for many months now, and believe I am in menopause (I'm at that age). However, reading these boards I have learned that others experience fevers and chills (at any age). In addition, my knees ache today like I've got the flu, plus I walked all over the city yesterday surrounding doctor appointments ... but I've read on these boards that "joint pain" is a common side effect.

Also I noticed my feet occasionally feel differently lately but it's NOT tingling. Am I imagining symptoms or are they real? How do we know what's what?

Any & all thoughts appreciated!

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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cancersnewnormal's picture
Replies 10
Last reply 9/30/2016 - 3:31am

Hi all!

I was on Keytruda for 20 months. It worked quite well for me, including a stoppage of any new brain mets! In July, i began having pancreatic issues, and we stopped/paused infusions. My brain scan as of 4 weeks ago, is clear, so it seems as though the immune response continues. WHEW! Although my pancreatitis cleared up, and the enzyme levels have gone back down, I'm now finding myself with joint/muscle pain, and the ever so annoying sinusitis. I've had a stuffy nose since early August, and I snore like a grizzly bear, even when wearing a breathe right strip! Thus far, the joint pain has been "contollable" with over the counter NSAIDS. There are days though, when the pain is too high for normal daily function. We're blood testing for Lupus and rheumatoid issues. Tests showing inflammation came back as out of range high, but not crazy high. 

My questions...... Has anyone had these same kinds of issues? As for treatment of them... did discontinuing immuno infusions do the trick? Were you able to "spot treat" body areas (ex. knee or nose), or did you have to rely upon systemic steroids? I'm not a fan of how the dex makes me feel, and I am concerned about systemically slowing the immune response, because I absolutely fear the return of brain mets. However... something has got to give.

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Anonymous's picture
Replies 3
Last reply 9/30/2016 - 3:44am
Replies by: Bubbles, BrianP, Anonymous

Hey, so I did IPI, but it came back in my lungs. Started Keytruda but two months later ended up in the hospital unable to breathe.

Dr. switched me immediately to debrafenib + mekinist combo, which relieved the pain immediately, but I know this is only a temporary bandaid.

Are there any options for long-term results after failing IPI and PD-1? Are there any promissing new trials in the pipeline?

Any long-term lung survivors after failing immune therapy?

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KAF's picture
Replies 1
Last reply 9/29/2016 - 8:24pm
Replies by: youngann

Hi all

I developed hypophysitis 1 week after my 3rd dose of ipi/nivo in mid July.  I've been on steroids, was weaned down when pituitary became inflamed again.  I went back on hi-dose steroids (100mg) a couple of weeks ago and now I'm down to 40mg.  I'm hoping to continue lowering that number but monday night (3am tuesday) I woke with what felt like flu- 103.2 fever and horrible chills.  I took advil and I felt fine the rest of the day except for fluctuating between chills & sweats during the day. The fever didn't come back during the day.  I have no sore throat, cold, or any other symptom that would make it seem like a flu.  Yesterday morning I woke up at 4am with a fever of 103.4 and chills again. I took advil, felt fine the rest of the day and the fever went away.  This morning about 2am my fever came back - 101.2 - and the chills weren't so bad but the muscle aches were painful.  The advil took the fever down and got rid of the muscle aches but my hands are tingly today and my vision is horrible today and I can barely read what I'm typing.

I called my doc and spoke with the nurse.  She thinks these are all side affects from the ipi since i've only been off it since mid july and she said this can happen after the treament is done.  I would have just thought that the hi dose steroid i'm on would have stopped the drug from all these side affect.  Does that mean the drug is still working in my system even while on the steroids?

thanks!

karen

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/29/2016 - 8:55pm
Replies by: cancersnewnormal

It's been a year since my husbands surgery.  Stage IV, 8mm tumor removed from his right arm.  Every day has been a gift.  Its been 4 months since we ended Opdivo treatments and although we are still dealing with side effects and after effects, the scans are clear.  I am so grateful for each day.  I read here daily on the success stories and the struggles.  They help me stay hopeful and grounded.  I dont say much on here in responses, but I do say prayers for you all and shed tears as well.  Everyone here has become family.  Thank you all. 

Bin

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Fressia's picture
Replies 4
Last reply 9/29/2016 - 11:44pm

On Aug 30th I was diagnosed with malignant melanoma. Long story very short, at the time I was living overseas but recently transferred back to the states for treatment because the hospital out there did not have adequate equipment or professionals for my case. I finally met with the surgical oncologist on Monday and before we proceeded with the wide excision and sentinal node biopsy, he proposed we go with an ultrasound and fine needle aspiration of the palpable lymph node in my groin because this would help guide the surgery options. 

Today I had the ultrasound and it wasn't really painful but my anxiety was getting the best of me. I was shaking the whole time. Anyways, I guess I'm just even more worried now because of the comments the doctor said during the procedure such as "this is a funky shape for a lymph node", "they are clustered together", and "lymph nodes are usually round and these appear to be a little lumpy which means there's some time of process going on but that could be a process of anything". 

I was told it would take about a week back to get results, ugh this is just so stressful. I guess I'm more so venting, but has anyone also going through this testing procedure? 

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braunerk's picture
Replies 3
Last reply 9/29/2016 - 4:38pm
Replies by: Anonymous, braunerk, jamieth29

Has anyone had the side effect of mental confusion? I am on the BRAF drugs and ended up in the hospital with mental confusion. I am now on half the dose and not having a problem but with the full dose big problem. I had trouble with simple questions and have a loss of memory of about half a day.

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Bubbles's picture
Replies 2
Last reply 9/29/2016 - 3:41pm
Replies by: jenny22, Polymath

(Always loved that line from 'Love Actually'!) I know you said you were taking a break from the forum for a bit and that is okay! But wanted you to know...should you take a peek...we are all still rooting for you! Love, c

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dawn dion's picture
Replies 6
Last reply 9/29/2016 - 9:54pm

Hello all. It's been quite some time since I have been on here. I have been taking Keytruda for 16 months and while it's obviously helping it has not getting rid of the "spot" that I have been battleing for almost 6 yrs. I have immense ongoing pain in my shoulder for a solud 9 months. Pain meds really don't touch it. After many conversations I am meeting with radiation oncologist to discuss the possibility of going at it from that direction. I am stable and I forget the term they used but Drs. feel comfortable with me coming off the drug and watching. I don't know how comfortable I am without sone sort if "defense". Anyone have any thoughts on this.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/29/2016 - 4:59pm
Replies by: cancersnewnormal

Can you have radiation therapy if a melanoma brain mets has started to bleed (causing an intracranial haemorrhagic stroke)?  Or should we wait until the scans show that the bleeding as slowed or stopped prior to starting radiation?  Just curious if the radiation would cause more bleeding and therefore swelling.

Thank you.

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Julie in SoCal's picture
Replies 6
Last reply 9/29/2016 - 4:34pm

Greetings Friends,

im not sure why, but this post has been rejected 2 times now. Maybe the third time's a charm.

It's been a wild roller coaster of a ride the last few weeks.  I thought that the treatment ride was leveling out (though probably not coming to a full and complete stop).  I thought I was joining a clinical trial. Alas it's not to be.  So here kicking Mel as I know it-
 
I will not be joining either of the trials I had hoped and thought I qualified fo. My liver numbers are too high and so I don't qualify.  So the plan is to get to get my liver back in shape where it should be and then move on with Mel.
 
My Rock Star Doc and I also talked about having the lung tumor resected and being done with it for now.  But again, there's no hurry on the lung critter and I still have options, just not clinical trial options at this time.
 
So that's all the news.  Of course, like a good coaster with hidden ups and downs, the plan is liable to change -seemingly at any moment (usually after I just catch my breath).  I'll be keeping my hands and arms inside the car at all times, but full and complete stop is a long ways off.
 
Here's to the process!  Thanks for riding with me,
 
shalom,
 
Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Julie in SoCal's picture
Replies 1
Last reply 9/28/2016 - 9:37pm
Replies by: debwray

I tried to post, but it said I was blocked. So am I blocked?

julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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snow white's picture
Replies 9
Last reply 9/30/2016 - 12:39am

So I am getting more info in regards to Dads Gamma Knife procedure.  It will be happening the beginning of next week, will happen in 2 sessions.  The ONE thing that threw up  red flag for me was that they said he needs a 2 week "cooling off" period before starting any other therapies.  This is contrary to what I have been reading on this forum.

 

Any thoughts?  Articles to print?

Thank you in advance!

Jennifer

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