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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J.bun's picture
Replies 10
Last reply 7/20/2017 - 6:48pm

The last week has been tough.  After clear scans and what appeared to be a complete response in May, it appeared to be time to switch from BRAF pills (Taf/Mek) to "maintenance" on Keytruda.  The idea being we got the maximum benefit from the pills and the Keytruda would keep things at bay/teach my immune system to fight off any malignant cells in the future.

Like so much of this experience, this has not gone "according to plan."  Last week, I noticed a lump in my groin (same place as Nov 2016). While the thought of pseduo-progression came to mind, I knew it wasn't -  and this was confirmed with fine needle biopsy.

Later today I am having a full body PET CT and brain MRI - hopefully the melanoma hasn't spread beyond my groin.  On Weds. I'll find out the results and hear about next steps for treatment.  I won't be surprised if I go back to Taf/Mek, but know I need a long(er) term treatment plan.

I'm not done fighting - but man, am I scared.  I think of you all, my fellow comrades - as we fight together. 

- J.

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I am 3a and a had a positive SNB on the left side of my neck. I have a swollen lymph node or parotid gland on my right side. I met my ENT this week and he said not to worry that he does not believe they are connected. He is sending me for a scan. Has anyone else ever had a similar experience. If so was it melanoma?

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DZnDef's picture
Replies 3
Last reply 7/20/2017 - 1:28pm

Hi all, I'm hoping one or more of you might have some ideas as to what these might be.  Prior to Easter, I started noticing some tender squishy lumps in my upper arm muscles, back of my upper thighs a back of my shoulders and neck.  They were about the size of a small jelly bean and the consistency of gummy bears which is to say, squishy, not hard.  They seem to come and go (or at least the tenderness does).  I have trouble locating one unless it is tender as they tend to be fairly deep, not right under the skin like a sub q.  I brought them up to my oncologist but of course they were in hiding at that visit.  Being an oncologist, of course he has cancer in mind but I've had two sets of scans since then and these are not showing up.  I now have a few spots on my right side and belly.  More googling has brought up rheumatoid arthritis (I thought that affected joints though not muscles).  Ganglion cyst is another possibility per Google.  I mentioned lipoma and fibroma to my oncologist but he said those don't come and go.  Anyone experience something similar?  Or have some ideas?  My meds are Tafinlar, Mekenist, Keytruda, prednisone, Keppra and Nature-Throid.  I think that's it.  I also take a daily probiotic and vitamin D3.  Any input is appreciated.

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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MovingOn's picture
Replies 8
Last reply 7/20/2017 - 1:15pm
Replies by: casagrayson, Jubes, Anonymous, BrianP, Rod, bcbcbc55, miaka618

May 5th I started on Prednisone (60mg/day) due to hypophysitis from Ipi (diagnosed via MRI). I tapered down by 10mg every 7th day until reaching 5mg. I have been at 5mg/day for more than 4 weeks now. But whenever I try to stop completely my headache comes back.

Have others remained on prednisone for more than 9weeks following hypophysitis from Ipi?

I don't see my Endo. again until mid August, that is when we will come up with a long term plan (88mcg levothyroxine, testosterone, cortisol, ?)

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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cammeronwall's picture
Replies 3
Last reply 7/20/2017 - 12:56pm

Hi,finally received my SLNB and WLE results back. The lymphnodes were clear and am now classified as state 2A instead of 3Acas they thought. Emory has been a wonderful choice for oncology. Is anyone else Stage 2A and if so, what has been your journey/ experiences thus far? I go for quarterly checks with my oncologist as well as dermatologist 

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momsmole's picture
Replies 6
Last reply 7/20/2017 - 8:25am
Replies by: momsmole, CindyJ, Janner

Over the past year or so, after my melanoma diagnosis last May, my husband who is 84 and a confirmed sun-worshipper all of his life, has been having some basal and squamus cell carcinomas removed from his forehead.  We were thankful they weren't more dangerous, altho he felt disfigured (the scars are very small and not very noticiable but they bothered him).  Yesterday he went to his dermatologist for a follow up from the most recent removal.  He did not tell me that three weeks ago he had noticed an odd mark on his left thigh, but knowing he would see the doc, he wasn't too concerned.  The doc took one look and said that's not squamas and wanted my husband to see a general surgeon.  Fortunately, he referred N to the same surgeon who had done my WLE so N knows him.  

The complication is that due to a heart condition my husband N is on coumadin a blood thinner.  The last time they had him off of it for a colonoscopy in 2011 he had a stroke, a mild one, but it left his speech impaired.  When he needed a colonoscopy a few years later, they hospitalized him and managed the blood thinner in a different manner with no problems.  Now he was told he'd have to be off coumadin for 4 days.  We don't know if that's because of a biopsy or an in-office excision.  the dermatologist left the office in a hurry, according to N, as if he didn't want to tell him he had cancer.  

i guess right now all we can do is consult with the cardiologist who oversees the coumadin and the surgeon who will determine the procedure.  Of course, we don't want to go thru stopping the coumadin twice if we don't have to as not only is it potentially life-threatening but stressful as hell.  

I've read on this forum and other melanoma sites that one can't tell by looking whether or not a lesion is melamona, but I've looked at images and N's spot is suspicious, more than mine was.  It's an assymetrical circle with one side kind of pink and the other like a crescent moon kind of white/gray crusty.  It's about the size of a little finger nail.  It's on the front of his upper thigh.  I know I'm worrying before we even know what to worry about, but given my experience where my mole had been on my shoulder forever and didn't look like anything other than a mole except it itched and bleed sometimes and I never once thought it was skin cancer, now I'm much more aware of what could happen.  And N is 84, heart condition, COPD, blood thinners, and could potentially need lymph node removals from groin which would impede his mobility for. while.  A more complicated situation than mine.

In the it doesn't matter category, it seems unfair both husband and wife should have to face skin cancer within a year of each other.  I've hardly gotten used to living with my own anxieties and have put off getting a care team in place due to denial.  Now I need to get it together to support him calmly and with a focus on his experience which will probably be completely different from mine.  In some ways that will be a head game.

He sees his GP today and hopes to see his cardiologist on a drop-in to see if he can coordinate with the surgeon.  His appointment with the surgeon is next Wed.  I remind myself that doesn't mean we have to immediately stop the coumadin.  We can reschedule if we don't have time to get that part done right.  But first I am scared of the risk of stroke, and then I am scared of the biopsy results, and then of course I am scared of the surgery and risk of coumadin again.

Long story as I'm prone to, but if anyone one has gone thru this themselves or with a loved one, I'd appreciate hearing your stories.  I also wonder if at 84 N's high risk of stroke when messing with coumadin outweighs the risk of possible melanoma.  Any thoughts would be appreciated.  

By the way, to update my first post from a few weeks ago, the spot on my inner lip has darkened.  I have to wait 5 weeks for the dermatologist, but I do have one now and I also have a melanoma oncologist appointment in early Sept.  This forum and those who responded to my post encouraged me to climb out of my cave.  THank you!

 

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sister of patient's picture
Replies 17
Last reply 7/19/2017 - 7:32pm

Hey all - we've had great news today to share, CT last week and results today are astounding. While onc won't say NED, we're just about there insomuch as splenic lesions appear to have resolved and last remaining liver met is gone. There's a couple of little things lighting up that they want to watch (2 new tiny spots, one in each lung but they could be anything and what is likely scarring in the spleen) so, yeah, it seems the monster is just about spent.

Onc did admit today that Leisa's tumour burden was just about the heaviest she had ever dealt with to have such a successful outcome - we kind of suspected that. She will continue Nivo for another 3 months and of course, have ongoing scans but also received a schedule now to start a slow taper from the steroids too.

So, it's a great day for us here (for some reason I can't stop crying - tears of joy though!!) and I sincerely wish everyone on here still suffering will soon get similar results and news!!

Best wishes to all!

Barb

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/19/2017 - 7:01pm
Replies by: Anonymous, Ridingaroundwith27Jennifers

Stage 4 with prior but not current lung mets. I'm on Keytruda and recently I have developed a sharp pain in the upper right lobe of the lung. It does not impede my breathing -- is this something I need to get looked at immediately? I worry about future eligibility for clinical trials as a result of Dr.'s employing steroids out of an abundance of caution. Has anyone had this sort of lung issue come and go? The moment I have breathing trouble I will certainly go into see someone.

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DZnDef's picture
Replies 17
Last reply 7/19/2017 - 6:09pm

Yes, my oncologist mentioned that word yesterday.  Then he backed off as I still have a couple of tiny spots in my left lung but he described them as likely remnants/scarring.  The brain is completely clear of visibly detectable mets as of yesterday's ct w and w/o contrast.  No new spots anywhere.  I celebrated yesterday with a chocolate milkshake.  However, I am really having difficulty absorbing this news.  The doctor's office is not where I am used to hearing good things.  I handle bad news quite well (lots of practice) but I just don't trust good news.  My labs aren't back yet so maybe there's something there.

I am also in a somewhat awkward position as we have no idea whether I am a responder to Keytruda or not.  This could all be Tafinlar/Mekenist.  In any event, I have been given a second reprieve from this disease (the first being my good scans three months ago).  I will have to learn to accept it.  Time to focus on rehab for my lingering brain damage (I walk just like a toddler.  I have newfound respect for toddlers.  Learning to balance is hard!)

So after five years at Stage IV, the beast is on the run!  Life is good, and longer than I was expecting!  Sweet!

I hope you all hear good news at your next appointment!

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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ToddG's picture
Replies 5
Last reply 7/19/2017 - 5:35pm

It has been just over 7 months since clinical diagnosis at stage III.  The radiology report below (condensed and sometimes in my words as I edited it) is from my PET/Ct scan 2 weeks ago.  A little background first.  Braf + had me on Taf/Mek until my onc didn't like some side effects I was having.  Switched to Zelboraf/Cotellic for 45 days with different but worse side effects. Went back on Taf/Mek. Pet/Ct at end of March showed increased tumor load and my move to Stage IV.  I started on the ipi/nivo drip on April 5th and was able to tolerate all 4 scheduled infusions with typical side effects.

Interval resolution with 5 mm lesion within Rt T11 vertebral body.

Interval resolution within the L5 vertebral body.

HYPER METABOLIC LEFT INGUINAL LYMPH NODE 5MM stable compared to prior scan. Onc thinks it'snot cancerous.

No new evidence in lower extremities.

Interval resolution of the left superior mediastinum hypermetabolic lymphadenopathy (ascending aorta).  Cardiac size and pericardium are within normal limits.

Significant interval decrease in size and hypermetabolic activity of the right infraclavicular and right axillary lymphadenopathy with the largest under the arm down to 1.5 x 1.2 cm from 4 x 3.6 cm.

Interval resolution of the 3 foci of hypermetabolic activity within the right hepatic lobe (liver).

Interval resolution of the left lower quadrant and mid abdominal mesenteric lymphadenopathy (small intestines).

Impression:  Overall, favorable response to treatment.

 

I just had my 2nd treatment of the maintenence dose of Opdivo yesterday.  Feeling pretty good today.  I encourage you all to keep fighting!

 

Todd

 

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rabbits68's picture
Replies 4
Last reply 7/19/2017 - 5:07pm

I got the news this evening that the black lesion on my tonsil is melanoma. I'm not sure what this means for the Clinical Trial I am on but I will be traveling there Monday. It is time for a scan and another treatment. I expect we will make a decision based on what the scan shows. The beast just keeps rearing it's ugly head but I am determined to keep fighting back!

LisaG

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/19/2017 - 5:03pm

Hello everyone, thanks for having me, my name is Mike & i now have stage 4 Melanoma up from 3B a 6months ago, i was first diagnosed in 2008 and have had 6 surgeries to date {my last one on June 29th 2017}  and the tumors seem to love my left leg & groin {lympnode area}. Im sad to report that my last set of CT & PET scans revealed a medium sized suspecious "possible"  tumor on my lower lobe of right lung & a smaller one on left lung. Hopefully next week ill drive out to Kaiser in Fontana California for a second opinion, i went there after my first surgery in 2008 but they said just keep up the scans and surgeries as needed. Now, 2017 its came back 5 times with a bonus in each lung. Im not happy about surgery, my Thorax Dr. explained its not a simple one, braeking of ribs, cutting muscles, collapsing lung, poking/proding for the tumor, drain bag etc. Im gunna push for treatment in way of Chemo or something, its obvious this Melanoma i have is refusing to leave my body. This last tumor they took out was apparently "Not" related in DNA to all the prior ones, so, its a new "strain" of sorts...anyways, another Melanoma Brother is on board here at MRF thanks for having me & ill keep ya all posted on what their plans are for me, Thanks...Mike

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thinkingofu's picture
Replies 13
Last reply 7/19/2017 - 4:43pm

Hello everyone!

My mother has just been diagnosed with Melanoma Stage IV. She lives in Eastern Europe at the moment, and I am afraid she will not receive the best possible treatment there as she resides in a developing country. Doctors themselves stated we should move her to Germany or similarly developed European country. And, ideally, USA when she feels strong enough

Here is our background:

She started to feel very dizzy a week ago, hospital ordered CT scan which showed 3 metastases in her brain and a lot of swelling around two of them.

There was also a mass found in her lung.

Doctors determined it was melanoma stage IV. She removed a mole 5 years ago in the same country, but the doctor did not send it for review (as it turns out, even though she asked him too. He said there is no need), so we had no idea she was living with melanoma  all this time.

She had an operation yesterday on her brain during which the swelling was relieved as well 2 of the metastasis removed.

Initially, as we found out about diagnosis, we were upset, as any loved-one would be, but then I started reading about new treatments that may give us hope (including this forum). Am I correct when I say that 

SRS combined with Ipi/nivo would give us the best chance?

What about Ipilimumab (yervoy) Opdivo and Anti-PD1? In isolation they are not as effective, correct?

And what about more conventional chemo drugs? I read there are not as effective, but are some more effective than others?

Sorry for so many questions, but since they are preparing for chemo, we need all this information to actually guide her current doctors in the right direction since they admit themselves to have very little knowledge about new developments in melanoma treatment. 

And final question, I promise (sorry): Have you heard of any good western european clinic that uses the latest protocols for treating this desease? I am aware we will have to pay for it from our own pocket, and its OK, I am prepared to sell everything I have just to save my mom. 

Thank you for reading this post and if any of you could share your experiences regarding treatment protocol and good clinic/doctors my mom and I would appreciate it so much

xxx

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Not important, we're just curious. My sister's 50-year-old vaccination scar on her shoulder suddenly turned itchy, bumpy and developed a red ring around it. Her derm actually noticed and asked her about it, then he zapped it off.

Anyone else ever had any kind of immuno do that?

Thanks. Best to all!!

Barb

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AliCat61's picture
Replies 9
Last reply 7/19/2017 - 3:54pm

Celeste, if I am remembering correctly, you mentioned some recent studies that may have suggested that steroids (prednisone in particular) can be taken while on immunotherapy without having an adverse effect on the efficacy of the treatment? Am I right about that? Can you point to a particular blog post or study? I am currently scouring your blog trying to find something about steroids and immunotherapy. My husband had some pretty severe side effects while on Ipi/Nivo. Hre received 3 out of 4 scheduled treatments. He was put on prednisone for 3 weeks (20 mg twice a day for a week, 10 mg for 1 week, then 5 mg for 1 week.) It was wonderful! I felt like I had my husband back, He was feeling great, breathing well, and was active. He has now stopped them and is scheduled to start Opdivo maintenance infusions tomorrow. Unfortunately, just in the 3 days since he stopped taking the steroids, the shortness of breath is back, very noticeable, as well as just generally feeling "bad". I wish I could elaborate but he is a man of few words. His current oncologist says absolutely not to continuing even a low dose of steroids while on immunotherapy. I'd like to be able to point him to something that might change his mind, and if I can't change his, then I would like to request a second opinion and be able to speak somewhat knowledgeably with a melanoma specialist at USA in Mobile. Any input would be so greatly appreciated. In the meantime, I will continue to scour your blog. Thank you all for all that contribute on this forum!

Alison - wife of Roy, Stage IV Metastatic Melanoma

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