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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Lisa13's picture
Replies 5
Last reply 10/18/2011 - 10:50pm

Last Thursday was my 4th ipi infusion. Last night I woke up in the middle of the night with the craziest itching ever. Benadryl took care of it. This afternoon, the itch has returned and it feels weird. It feels like I'm getting goose bumps and I feel a bit chilled and then the itching happens (mostly on my scalp, arms and back). I have very small non coloured bumps on my arms and back. Has anyone experienced this? I know the itch is normal as I've had itchy, dry skin since the 2nd infusion, but now it's getting worse. 

Lisa - Stage 4 

Many impossible things have been accomplished for those who refuse to quit

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lhaley's picture
Replies 3
Last reply 10/17/2011 - 11:54pm

The day was eventful at least with the procedure itself.  However it has already shown growth.  They have moved the MRI update to 4 weeks instead of 6 just to make sure. 

Details are on my Caring Bridge and much easier to post.

By the way, I do feel pretty well tonight!

Linda

http://www.caringbridge.org/visit/lindahaley

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janP's picture
Replies 3
Last reply 10/21/2011 - 9:31am

 Thank you all for your bravery and sharing of stories and information.  I lurk here on occasion, but now I need some feedback.  Originally diagnosed in 1992, I'm stage IV since l998, with 2 subsequent bouts of mets....no surgery since 2000, however I did have a new insitu melanoma and a regressed melanoma in 2005.  A recent PET scan shows FDG accumulation in left supra hilum which corresponds to a  lymph node with SUV 2.77 measuring 1.2 cm x 1.1 cm.  No other hypermetabolic activity noted.   I have been very viligant and proactive in my care...doing scans every 3 months for all these years.  Because of the frequency of my monitoring all mets have been diagnosed by scan before any symptoms have had a chance to appear.  My oncologist is out of the country on vacation, and his office has scheduled an appointment with a pulmonary specialist on Nov 11.  I feel this is too long to wait.  Any feedback would be so appreciated. 

janP

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justlittleoleme's picture
Replies 13
Last reply 10/19/2011 - 2:48pm

Long week last week.  We met Tuesday with the surgeon for a post op check up.  She removed a skin tag that was disrupted during surgery (path came back clear!)   We met with Dr. Christopher Lao at University of Michigan.  He went over the same three options the other oncolgists did.  Wednesday we met with the local radiation oncologist.  Friday back to IU Simon Cancer Center.  First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher.  We enrolled in the E1609 interferon vs. ipi.  Our only basic option since he is Stage 3B.

Radiation starts tomorrow and he will have five treatments.  We are waiting to hear all the goodies about the trial.

Not looking forward to moving away from our kids for a month if we get the interferon arm but it will all work out.

Please share your experiences with interferon, ipi or radiation.  Any tips?  I have Jane's website bookmarked!

We don't know how strong we are until being strong is the only choice we have.

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Lisa13's picture
Replies 1
Last reply 10/17/2011 - 1:55pm
Replies by: AlanM

Last Thursday was my 4th infusion. I've been tolerating Yervoy (ipi) very well with very limited side effects. Last night, I woke up in the middle of the night with the worst itching on my head and arms. I also had a small rash on my arms. My body felt like I was having an allergic reaction, so I took a benadryl and the itching and rash went away.  Today, I'm experiencing a bit more rumblings in my stomach so my immune system is obviously revved up and hopefully doing what it needs to do.

This just goes to show you that symptoms don't always come on this drug. The immune system needs time to work and when it's ready, it let's you know!

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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My wife was told by our very professional and highly respected radiation oncologist that the Gammaknife would have no side effects to speak of. Especially compared to her previous craniotomy. For her first round of two brain tumors she was very positive and upbeat, almost flip - saying the tumors were nothing and it was a piece of cake. True enough, she was able to zap those two, but my wife did have some immediate side effects (speech slurring, memory problems), as well as some longer term effects setting in around week two post-treatment (general fuzziness and forgetfulness, losing track of her conversation thread). Supposedly these would have resolved in time. Unfortunately she had another five tumors that needed to be treated about 18 days ago. Again, the radiation oncologist was very upbeat, "these are small, no problem, we can handle these, no side effects, the margins are tiny". She had no speech issues this go round (no tumor was in her speech center) and other than some general tiredness had no immediate side effects. But after about ten days, she started having more fatigue and more memory and cognition issues which persist to this point. And which she is not happy about at all. In talking this over with our oncologist he said that she was not the only patient who ended up with more issues than they were led to believe. He did think her brain would rewire and she'd regain lost function, although as my wife pointed out - by the time this ocurred, she might be in for another round of treatment and would probably never regain her previous capability.

I am pretty sure she would have done the Gammaknife treatment anyway, even if they had been more accurate in their portrayal of potential side effects. I'm also pretty sure that in order to get people to go with the treatment they were understating the side effects. Both my wife and I would have rather known about the potential side effects so that when they emerged it wouldn't have been so difficult to deal with. For me it's all about expectation management - if you know what to expect, it is easier to cope. 

She is scheduled for a brain MRI in 11 days, and we frankly expect to see more brain tumors and depending on location and number, have to make a decision about treatment, including whether to do cyberknife, gammaknife or whole brain radiation. At least this time around we are more savvy about the effects. 

Nick

 

 

 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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deardad's picture
Replies 9
Last reply 10/19/2011 - 7:22am

Well I am elated to share this news with you all.

First month scans results on vermurafenib find that my dad has had a complete metabolic response. Only a week ago a lump popped up on his neck and we were all disheartened at the thought that he wasn't responding. It did not come up on the PET and they are putting it down to an inflammed lymphnode due to a cold. His previous liver and spleen mets.....were not visible on scan, the brain is apparently clear as well...although Im not sure whether they had MRI results. I didn't go to the appointment and my dad doesn't ask a lot of questions, but I assume that's clear too (the oncologist said that it was clear - according to the PET). He still has to see the neurosurgeon as a follow up and MRI results go to him.  

I am aware that this by no means a cure, but definately the best result we could have expected. The oncologist felt that he could confidently justify taking his findings to the US regarding the use of this drug in patients with a low tumor burden. 

I don't know what this means for the future for my dad, but I hope this will encourage others.

I would like to see a combo of IPI and b raf but it's not going to happen for my dad. He is technically on a trial so I suppose we wait and hope that he continues to respond. 

Nahmi from Melbourne

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j.m.l.'s picture
Replies 2
Last reply 10/17/2011 - 8:44am
Replies by: Lisa13, momof2kids

I am past my second dose of yervoy. I have experienced almost no side effects. Some constipation, one bit of itching and thats it. DOES ANYONE HAVE ANY IDEA WHETHER THE IPI IS WORKING AT ALL. I thought that having some mean side effects actually meant that the drug was revving up the immune system. thanks much

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SStamps's picture
Replies 6
Last reply 10/19/2011 - 1:04pm

My husband received his last ipi treatment at the end of September we have gone back for CT and MRI all tumors are shrinking some brain mets do not show up. We do not go back to Houston until November 21st for another CT and MRI.  So the last couple of weeks have been great, Mickey (my husband) has been more active working longer hours and back to golfing.  Today he is defending his club champion title and I am so happy for him that he feels good enough to play.  So this week he has been complaining of pain in his left buttock.  When he sits to relax or getting out of vehicle he is stiff and hurts when he takes a few steps.  He said it feels a better and swears it is a muscle.  After searching I am concerned.  I will call Dr tomorrow but can anyone tell me if it feels like a sore muscle?

Thanks

SStamps

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renakimu's picture
Replies 2
Last reply 10/17/2011 - 6:31am
Replies by: FormerCaregiver, KatyWI

in november my mum will have the second 3month visti to the onc, that means 6months after diagnosis.she had this weak a u/s of the upper and lower abdomen and everything was clear, blood test that has LDH increased from 168 to 188 but still in normal values and GGT(if you know what that means - i think has smthg to do with liver) increased from 48 to 51 and the normal values are 19-38, i dont know what cause that...aslo the(ESR) Erythrocyte Sedimentation Rate from 20 got to 10, and i think thats good.also she had a mammography and it was ok.now until she has her appointment i wiil be anxious about GGT, does someone knows smthg for that?

 

blesses to all of you

DiRena

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KatyWI's picture
Replies 11
Last reply 10/17/2011 - 12:21am

Hello everybody,

Most of us (myself included) have been pretty scared at the prospect of whole brain radiation.  The potential side effects are scary and there are definitely some folks who have had a very bad experience.  I just finished my 14-day course of WBR, and my experience was not-so-scary after all.  I wanted to share to encourage others, both now and those who might stumble upon this post when searching the board for information in the months and years to come.

Standard disclaimer...every treatment is individual; this post is the experience of THIS individual.  Your mileage may vary.  smiley

I had a 35 Gy dose, segmented into 2.5 Gy/day for 14 days (weekends off).   Therefore it took just under 3 weeks to finish.  Each dose takes less than five minutes, room entry to room exit.  The radiation itself is delivered in two pulses of 20-30 seconds each.  The only weird thing is that the radiation tricks the brain into seeing and smelling things that aren't there.  I saw a bright blue light and smelled ozone during the radiation pulses, but to my very great surprise, the technicians informed me that neither one was actually happening.

I began on a Monday.  My hair started to fall out on the second Sunday; by Monday (dose day 11)  I needed a scarf to go to work, and on Tuesday I had my friend buzz it because I was shedding everywhere.

I was warned that fatigue was a common and likely side effect.  I had not had significant fatigue.  I have been careful about getting to bed a little bit earlier and haven't had an issue.  Granted, I am an athlete, but I was able to continue working out several days each week, including one workout each week longer than an hour.  I have had no issues continuing full time at work. 

My eyes, ears, and scalp have become much drier than usual.  My contacts seem to "goop up" at night, making my vision a little fuzzy.  I was told that a feeling of plugged ears was somewhat common because the ear canal would produce thicker wax than usual.  For me, it's just been more like my ears are painfully dry.  The radiation oncologist recommended a drop of baby oil; this helps a little but I need to find unscented mineral oil (baby oil is fragranced).

My scalp and forehead are a little red.  My scalp got itchy almost right away, and a short time before my hair started falling out, my scalp became painfully sensitive.  It's getting better, two days after the last dose, but at this point I can only handle my wig or even a hat for a few hours at a time because my scalp is so sensitive.

So far, I don't feel any stupider.  cheeky  The radiation oncologist knows I research on my own pretty heavily, and he was quick to reassure me that a certain study that's out there citing a 50% rate of dementia after WBR is considered invalid because it combined WBR with radiation sensitizing drugs, which is not done any more. 

So there's my experience.  I wish nobody ever NEEDED to do this, but if you do...realize that it might not be as scary as you fear.  It wasn't for me.

KatyWI

Just keep going!

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AlanM's picture
Replies 16
Last reply 10/21/2011 - 7:46am

I had my second infusion of Yervoy on September 7th. About a week after the infusion I started having symptoms of colitis and my doctor started me on prednisone. I continued increasing the dose over the course of a couple of weeks until I was up 100mg per day with worsening symptoms (no perferation but believe me they were bad) to the point where I was checked into the hospital for a three day stay! While there they gave me a single dose of Imfliximab (Remicade) which finally had me turn the corner and relieve the symptoms.  Over the last two weeks I have been gradually reducing the steroid dose and yesterday was my final dose!  Given my reaction to the last infusion my doctor does not recommend another infusion. He told me that I shouldn't be thinking in terms of the number of doses, rather I should feel assured that my immune system was revved up by the two that I received. 

Have others here had good/lasting results with an abbreviated cycle of Yervoy? 

Alan

 

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CAdesiree's picture
Replies 2
Last reply 10/16/2011 - 2:00pm
Replies by: CAdesiree, Charlie S

i was stage 1b at biopsy... intially mohs was performed.  i saught a second opinion... that dr said he saw satellite.  i underwent a resection & snlb.  they took a total of 7 nodes to test, 3 from one side, 4 from the other.  one came back with micro mets.  i don't know how to proceed...  fortunately the area that was resected was cancer free... but my node was not.  i am to speak w my onc and ask about gentetic testing, a complete axillary dissection, or systemic therapy like interferon or other chemo...  i am a little overwhelmed trying to look into all of these options so i am informed when speaking w my onc.  plus, i kinda freaked out hearing there was any mets, micro or not and didnt get my path report... i plan to do that monday.  in the meantime any experience, guidance or suggestions are greatly appreciated.  thanks in advance!!!

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cwu's picture
Replies 10
Last reply 10/18/2011 - 10:39pm

Dad had his second dose of Yervoy on Monday.  Yesterday he experienced mild diarrhea and dizziness.  He had a little diarehea after his first dose three weeks ago and the nurse told us that he could take Immodium.  Yesterday's diarrehea was very mild so he didnt have to take Immodium and it went away.  However, his dizziness continues today and I called the nurse.  Was told to monitor him and if his dizziness gets worse or doesnt go away, we should take him to the MD Anderson ER to get him checked out.  His dizziness is off and on.  I read on the Yervoy medication pamphlet that dizziness is a symptom of problems with thyroid or pituitary glands.  He doesnt have any other symptoms other than dizziness.  Has anyone experienced this and if so when should I take him to the hospital? What medication did they give you to treat dizziness? I want to keep him safe since Yervoy side effects can be very serious but on the other hand i dont want to freak out and make numerous visits to the hospital.

Thank you.

Chau

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Jeannie C's picture
Replies 9
Last reply 10/17/2011 - 9:10am
Replies by: Jeannie C, LynnLuc, Anonymous, Janner, Jamietk, jackiewin

I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ???? I always thought melanoma was an "external" cancer, not something that could affect the brain, lungs etc??? Do I need to seek out another doctor?

Life is, you are, be. The great cosmic imperative is to simply be.

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