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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Doug-Pepper's picture
Replies 7
Last reply 9/29/2014 - 2:43pm

Routine chest x-ray showed something on lungs. Pet scan showed nodule in right lower lobe measuring 1.6 cm x 1.5 cm. & another smaller one.  Another ct scan scheduled for tomorrow on lungs &  brain also. We meet with a surgeon on Friday.Not sure if they will biopsy or remove. Any advice or prayers are greatly appreciated.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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oldblue's picture
Replies 11
Last reply 9/29/2014 - 12:18pm

My oncology surgeon told me that she felt that they were related. She estimated that over half her clients reported extreme or very high stress in the previous 12 months before a melanoma diagnosis.

My personal experience confirms her hunch. But, is there any research that people are aware of relating the two?

Thank you.

Nigel.

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missourimom2008's picture
Replies 7
Last reply 9/29/2014 - 9:16am
Replies by: oldblue, Anonymous, missourimom2008, malika, Tim--MRF

My husband was diagnosed a few short months ago with Malignant Melanoma, right before his 25th birthday. He has undergone 1 surgery and his pet scan just came back negative for which we are feeling very blessed. We have however been referred to a specialist at Barnes-Jewish Hospital in St. Louis due to the fact that he has a mitotic rate of 15....I know his Oncologist said ideally it should be 0, does anyone have any answers, advice, experience or information about having such a high mitotic rate? I have done some research but just am not finding much. Thank you!!

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brooke's picture
Replies 14
Last reply 9/29/2014 - 7:02am

Hello!

I've been reading about various 'cancer fighting'  supplements and wondering if anyone has opinions or experiences with them.

I've heard especially good things about curcumin, wondering what common dosing is.

My  husband has also been juicing every day and I've bought him green tea extract and vitamin D. 

(We are not doing this in lieu of standard treatment, just additionally!)

Thanks,

Brooke

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Ginger8888's picture
Replies 3
Last reply 9/29/2014 - 6:57am
Replies by: rick1981, Ginger8888, BrianP

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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kylez's picture
Replies 1
Last reply 9/28/2014 - 7:03pm
Replies by: Thandster

Has anybody heard from NYKaren? I haven't seen her post in awhile. A couple of months ago she was starting pembro after a long fight to get the treatment.

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RJoeyB's picture
Replies 8
Last reply 9/28/2014 - 6:54pm

After my update in July…

 
…it's been a tough go.  With the positive trend from June to July on my brain MRI showing a reduction in the enhancement along the previously (February 2013) radiated tumor bed along with reduced cerebral edema (swelling), my doctors started to taper my dosage of dexamethasone, with the goal of getting me off the steroid as soon as possible within safe taper limits.  Although the edema was still present, the thinking was that as we tapered over 4-5 weeks, the edema would continue to resolve, along eventually with the issues with left-side motor control.  And getting off the steroid was welcome, because the side-effects were miserable and getting worse.
 
Unfortunately, the motor control issues persisted and slightly worsened during the final few weeks of the taper.  At the highest dose before tapering, I was on 8-mg daily (4-mg a.m. and p.m.) for about six weeks, then for the taper it was cut in half to 4-mg, then 2-mg, then 2-mg every other day, with the cuts happening about every 10 days.  When I transitioned from 2-mg to 2-mg every other day is when I started to notice things getting worse.  I read a lot about people who experienced "steroid myopathy" in various forms during and after an extended course (> 2 weeks) of dexamethasone, and despite the fact that the issues were predominately left-side, I was generally weak in all my limbs (typical with steroid myopathy).  Since I've had so many issues with my left side earlier as part of my melanoma journey (all for bone mets:  partial shoulder replacement with 10" titanium rod, plus radiation and surgery to mets in my femur and tibia just above and below the knee, all left side) that I thought perhaps it was a combination of myopathy being amplified on my already traumatized left side.
 
But about 10 days ago, right around two weeks after completely finishing the steroid, things got even worse and it was pretty clear that this was different than myopathy.  I couldn’t bend my ankle or move my toes at all, grasp or pick up anything with my left hand, and my arm’s range of motion was much worse than its already previously reduced state.  No real pain to speak of, but I couldn't walk, get up from bed or a chair, shower, or get dressed without assistance from my wife.  We planned to call the doctor last Monday following the weekend when things really got bad, and after falling in the yard walking from the car to the front door, it was just further proof that we needed to call.  Everything is consistent with unresolved edema and the location on the map for left-side motor control, all what we'd expect, but still very frustrating and disconcerting.
 
Last Monday, my radiation oncologist started me back at the dexamethasone dose, 2-mg, where I had started noticing the symptoms worsening, to see if that would start to make a difference.  She feels, and we agree, that the symptoms and timing are still consistent with radiation necrosis that hasn't resolved, rather than tumor regrowth at the original tumor site.  But, if things continued to worsen, she considered moving up my next brain MRI to help rule out a new met elsewhere.  I spent the week between bed, the recliner, and some time at my home desk, but needed help just getting from spot to spot, doing one-handed typing while trying to get some work done.  I had an unrelated appointment at the hospital, but had to use a wheelchair in the building.
 
By Thursday, we hadn't noticed a change, but it also hadn't gotten any worse, so she increased the steroid dose to 4-mg.  After a few days, by Sunday or Monday, there was very subtle improvement.  If I had to give it a number, it was maybe 5% better.  Where I couldn't move my ankle or toes at all for a week, I could now see very slight movement and a twitch when I tried to move them.  Same with my smaller fingers (my thumb and index finger have been less affected, an interesting quirk of the brain's motor control map), they could start to help grasp things.  But the improvement was still so small that I couldn't be sure if it was just wishful thinking and/or getting better at compensating for this (hopefully temporary) disability.  
 
We picked up a quad cane which has helped with stability and mobility and allowed me to get into the office this week (with my wife doing the driving), and still having to hunt and peck when on the computer.  The past few days have shown a little more improvement, again nothing major, but enough that I can stand up from the recliner and get out of bed on my own, awkwardly but under my own power.  I think I'm past it being wishful thinking or better compensating, but it is slow going.  I also had an evaluation for occupational therapy (OT) yesterday and will start a program next week, along with a physical therapy (PT) evaluation.  Until we see more improvement and resolve the root cause, PT won't help much, but OT can help with some "getting by" strategies in the meantime.
 
Next step is my regularly scheduled brain MRI this Monday (8 weeks since the last one).  We fully expect that the swelling will be present, along with signs of radiation necrosis enhancement at the site of the original tumor bed.  We know that the MRI can't differentiate between necrosis and tumor, but given the subtle response to the steroid reinduction, assuming the edema and enhancement are where we expect, it won't be a surprise.  Hopefully that is as we expect, at which point my doctor may decide to again increase the steroid dose.
 
From what we've discussed and I've read elsewhere, sometimes this is the game and balancing act that is required with radiation necrosis, requiring multiple go-rounds with dexamethasone, trying to manage, control, and reduce the edema symptoms while also minimizing the time on the steroid.  My doctor has also said in more difficult cases that a second craniotomy to excise the necrosis might be considered and there is some off-label use of Avastin (becacizumab) with necrosis because of its anti-angiogenesis properties, but we’re not at the point of looking at either yet.
 
Long story short, has anyone else out there had a similar experience (or any experience) with radiation necrosis following SRS?  It's been frustrating and discouraging to be this far out from the actual treatment and now dealing not with the tumor itself (as best we know) but a late onset side-effect of the single session of SRS over 18 months ago since my last true new met.  The estimate is that 10-15% of those who receive SRS to the brain will have diagnosed radiation necrosis, but that as high as 50% may have it at some point but be completely asymptomatic and therefore undiagnosed.  Onset is usually in the 6-24 month range, post-treatment, with a plateau and stabilization after two years, even for those who struggle with it.  Personally, I went from exercising regularly again and feeling better than I had in four years since diagnosis to the worst I've felt, and again, not from new disease but a relatively rare complication of radiation to the brain.
 
Curious,
Joe
 

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katie1's picture
Replies 7
Last reply 9/28/2014 - 6:30pm

I'm wondering how people are doing with their adrenal insufficiency over the longer term.  Have you had to change your steroid dosages over time.  If you have had recurrence has it necessitated a change in dosage.  Have you had symptoms of adrenal insufficiency without a known cause (ie illness)?

There doesn't seem much in the literature about long term maintenance of Ipi induced adrenal insufficiency. I have only found articles that describe the phenomenon.   My husband participated in the adjuvant Ipi (3mg/kg) trial and developed hypophysitis a year ago following the 4th induction dose. 

The general attitude seems to be take some medication and all will be well.  I'm wondering if that is the general experience.

Kate

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 6:06pm
Replies by: oldblue, RJoeyB

Thanks!

Nigel.

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 5:40pm
Replies by: oldblue, Bubbles

Hi all,

I am a recent diagnosed stage 3b and have been offered this trial. Its 50:50 whether I get the drugs or the sugar pills (placebo). The drugs are the BRAF inhibitor dabrafenib and the MEK inhibitor trametnib.

I had two inguinal lymph nodes positive on SLNB in 07/2014. This was followed up by one positive lymph node on the complete lymph removal from my L groin in August.

They say this may 'mop up' any cells still in my body. Every oncologist or surgeon or trial professor has used the term 'mop up.' This apparently is the first time this drugs have been used for stage 3.

Is anyone on this trial - its multi centre - or does anyone have any views or expereinces of it?

I'd be grateful for anything you wish to share.

Thank you in advance.

Nigel.

PS I'm being treated in Sydney, Australia.

 

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JoshF's picture
Replies 8
Last reply 9/28/2014 - 1:55pm
Replies by: oldblue, ecc26, JoshF, Mat, rick1981, dvd

Hello Friends-

A friend of mine has a friend that is now stage 4. I don't know all the details but intial diagnosis was Stage 3 in 2012 with cells found in a lymph node. This year went to stage 4 and did IL2 with progression right away. I'm told there is metastasis to soft tissues, bones, liver and I believe lungs. The way my friend has talked about it...maybe he'll have a year left. Not sure if he is BRAF + or -.

I guess I'd like to know from Stage 4 patients who have a a moderate to heavy tumor burden and are still fighting or NED. As many of you know I'm stage 4...currently NED and in a Promethesus combo trial of Ipi and IL2. I did yervoy last Oct-Dec and then did 22 of 24 bags of IL2 in January. Scan since have been clear and I have scans coming up Oct 3rd. I did not have any lymph node invovement, the crap just decided to show up in my lungs. That being said I had low tumor burden and I'm not sure how much it matters. This guy was Stage 3 and fell into the 70% survival rate for his staging...I wish they'd update that. The way it sounds...he was told he was in better place than many but as we all know...this beast is tricky.

I have reached out to these people to try and get more info. They're going through a lot and I'd like to try and provide support....hope. I just hate when I hear someone is given a "timeline" to live. He clearly is prepared to fight but the way it sounds death is imminent. I've heard some great stories here and given the opportunity I'd like to share....give hope that he can be around more than a year!!!

Josh

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

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scragfinch's picture
Replies 20
Last reply 9/28/2014 - 1:23pm

Hello everyone. I'm new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn't know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn't do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I'm 34.

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RJoeyB's picture
Replies 2
Last reply 9/28/2014 - 12:56pm
Replies by: mary1233, JerryfromFauq

As expected, the FDA today committed to a six-month priority review with BMS for nivolumab ("Opdivo"), following a similar process as that done with Merck for pembrolizumab ("Keytruda"):

http://www.reuters.com/article/2014/09/26/us-bristol-myers-fda-idUSKCN0H...

 

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