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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sharmon's picture
Replies 14
Last reply 12/1/2012 - 7:33pm

I can't write and explain like some of you can.  I read here daily and feel a connection here that I don't feel with family and friends.  Brent is my life and we are going through some bad stuff right now.  His pain is a 10 and the doctors here are going to do a radio frequency ablation to the nerve that is causing the pain.

I asked earlier if anyone has had any success with this kind of nerve block and not one person responded so I guess i am on my own with this proceedure as far as what to expect or watch out for.  . 

It is hard to reach out for comfort and when I am in the heat of the battle so to speak with no road map it is downright terror.  Nights in the hopsital alone are the worst.

He is fighting with all he has right now and the next infusion of the drug is at week from tomorrow.  He has to make that appointment for the infusion.

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audgator's picture
Replies 4
Last reply 11/26/2012 - 10:11pm
Replies by: Bubbles, audgator, kylez

To recap, I was an unsuccessful Yervoy patient and went almost straight into an anti-PD1 trial. I did the 2 rounds of infusions every 2 weeks for 12 weeks each, ending almost 3 months ago. So I am a week away from my first maintenance infusion.  I have had intermittent itching ever since the Yervoy. It subsided somewhat but has been mostly on my shins/calves.  The last few days it has appeared on my upper arms worse in the tricep area. Are others experiencing a nomadic rash and/or a rash lingering this long after no infusions for 3 months?  Any opinions on whether this is still a Yervoy side-effect or more likely from the anti-PD1?   Dan

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Colleen66's picture
Replies 5
Last reply 11/25/2012 - 8:46pm

First thing....I apologize for so many questions and such.  I just keep thinking of bases I feel I need to cover.

In February (I think) my regular Doc ordered an X-Ray because of a fall I took, it was of the neck.  Nothing broken but showed a cyst or whatever.  They did an ultrasound, nodule on my thyroid.  Doc says it showed signs of calcification and most likely nothing to worry about.  2nd scan in october, looks about the same.  Scan again in 6 months.  No problems.

July is when I found out about melanoma.   Endocrinologist does not seem concerned.  My brain is screaming.  I can't keep up with everything.  I'm thinking back burner for this.  I know it's in my records but I have no clue if my Oncologists have read them through. .   Should I press this issue? Or just try and calm myself down and get through the next year.

Thanks (again) for reading.

Colleen 3A

Live!

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beatricefromPARIS's picture
Replies 1
Last reply 11/25/2012 - 9:48pm
Replies by: DonW

Hi guys,

A bit of update 3,5 years down stage IV diagnosis

8 months on ZEL (full dose in March April then half-dose since May)

Everything almost gone in July PET

Quasi NED November PET (one bowel lesion at 2.2 suv uptake considered not significant)

ZEL treatment goes on 

I'm happy but tired and not able to go back to normal life because of treatment fatigue

...and in the back of my mind, the possible (accelerated?) recurrence if Zel stops working.

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I have been on this board periodically in the past.  Had a routine CT scan the day before Thanksgiving.  Sadly, I have recurrent disease after being diagnosed with Stage IIIB in 04/2008.  I had done perfect up until now.  Had 2 positve sentinel nodes.  CLND showed 33 other nodes negative for disease.  Did the year of Interferon.  CT last year was completely clear in 11/2011.  Now I have mets to the liver about 8 x 10 cm aggregate between the 2 liver lobes possibly involving the gall bladder.  There is also a possible peritoneal met near the duodenum.  There are some other intrapabdominal/mesenteric nodes. 

Emotionally difficult.  As all here know, life hangs in the balance.  I am having bilateral hip pain and calf pain.  The hip area was seen on the pelvic CT and no masses there.  I do fear given my symptoms the PET will show otherwise.  I am scheduled for a bone scan, PET scan and Liver Biopsy this coming week.  I'll meet with my local oncologist and also Thomas Gajewski at the University of Chicago this coming week to begin to explore options.  There are some but not extensive trials at the U of C.  Of course the marker testing will determine the options.  I am just beginiing to get a handle on the options/decisions.  I am fortunate or unfortunate to be a physician.  Still, this brings up a lot of complicated issues.  First, I need to work to support my family.   When I don't work, I am not earning security for my family and could lose my health insurance.  This is in a sense an orphan disease.  Hard to get informed recommendations from colleagues on where to go.  It is also difficult to drop everything at the drop of a hat and travel for therapy.  Still I know I have to be proactive and aggressive with the prognosis of this disease.  My fear is that given the progression from NED to extensive abdominal involvement, I have aggressive disease.  Probably not much time to be collecting opinions and not starting treatment.

The big question I have is where would be the best place for another opinion.  The usual places are being considered.  MD Anderson, Sloan Kettering, Moffitt, Mass General and the NIH.  These are not the only places.  What I am looking for is the place with the greatest access to trials and a team of physicians willing to be creative given the low response rate to the standarded therapies.  I am interested in the PD-1 trials.  I am not sure if they are still open and it seems you have to failed another therapy first before becoming a candidate.  It seems in the past the NIH was the place to be, but I don't see as much chatter about them as of late compared to last year.  I am looking for the opinions of those who have spent extensive time researching these insitutions and the conclusions they made.  I thank all in advance for taking the time to share their experiences and expertise.

Kevin

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Colleen66's picture
Replies 18
Last reply 5/3/2013 - 7:13am

Hi all.  I am starting Interferon in December.   I've read that it may effect my thyroid.  Has anyone had a problem with this?  Did you have symptoms?  And any other knowledge of this would be much appreciated. 

Also, I am bi-polar with major depression and anxiety.  I have been hospitalized and also have had ECT treatments.  I have talked to my psychologist and we have a basic plan in place.  I'm not really concerned.   My meds have kept things well controlled for about a year or so.  Should I be More concerned about this?  Has anyone experienced severe depression while on Interferon?

I also have Celiac Disease.  Would this be a concern for me?

Thanks for any replies,

Colleen 

Live!

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Gene_S's picture
Replies 21
Last reply 11/29/2012 - 4:07am
Replies by: LynnLuc, Anonymous, Gene_S, Colleen66, MikeWI

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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lrkg1234's picture
Replies 6
Last reply 11/28/2012 - 9:15pm

Scott is going to be starting IL-2 this week. Probably on Wednesday.   He had a small spot on his brain and that is going to get zapped on Monday.  it's very tiny so no one is worrying about it being a problem with the IL-2.

I know it's going to be very hard on him, but the potential results are promising.  I'm so worried that I can barely sleep.  The stress is really doing a number on the whole family. 

Praying for a miracle. 

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squirrell68's picture
Replies 2
Last reply 11/24/2012 - 9:44am
Replies by: squirrell68, Phil S

My brother John has just completed his 4th round of biochemo, so far (everything crossed) he has a good response to the treatment. He has developed vitiligo and experienced the usual side effects once he is home. My question to all those who have been through the treatment, is whether it is normal to have such a variation in the side effects during the treatment? Treatment one was tough, treatment two was a bit better, treatment three was loads better but treatment four was really tough again. Is this normal?

Determine to keeping fighting.

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Hi everyone Brent is on the trial Anti PD 1, at Moffitt. It will be two weeks on Tuesday and right now he is hospitalized due to dehydration and rib met pain. I have heard of the tumors becoming swollen and painful. He has a large tumor in the area of his right flank. Anyone with experience. They are talking about at nerve block so he doesn't have to take so much medication. Anyone ever had a block done and does it work?

Blessings to each of you and thanks.

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Hi everyone Brent is on the trial Anti PD 1, at Moffitt. It will be two weeks on Tuesday and right now he is hospitalized due to dehydration and rib met pain. I have heard of the tumors becoming swollen and painful. He has a large tumor in the area of his right flank. Anyone with experience. They are talking about at nerve block so he doesn't have to take so much medication. Anyone ever had a block done and does it work?

Blessings to each of you and thanks.

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wangyue365's picture
Replies 8
Last reply 11/29/2012 - 4:20am
Replies by: LynnLuc, Gene_S, Rocco, NYKaren, Linny, Anonymous, awillett1991

Hi, 

My father has stage IV melanoma. Cancer is now in his lung, liver and bone. He had two Yervoy infusion already. He has side effects such as fatigue, fever, and lost of apetite. As Christmas is coming, I am thinking of taking my dad and mom to a sun destination, such as Mexico or Dominican. But I am not sure if such a vacation is going to put any risk on my father's cancer? Or there is no effect of sun on my father's case already? 

Thanks for your advice.

Ady

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tjndnd's picture
Replies 18
Last reply 12/2/2012 - 6:03pm
Replies by: natasha, amandamini, Anonymous, Janner, POW, tjndnd

Hi,

I'm new here - my wife is 38 weeks pregnant with our first child, and about 2 weeks ago was diagnosed with a melanoma lesion on her upper arm.  The details of the pathology report are as follows:

Breslow depth - 1.1mm

Clarks level 4

Non-ulcerated

Mitotic rate - none identified

Spitzoid type, unaffected margins

She recently had a wide local exicision performed, and the results came back as all margins clear.  She is scheduled to have a SNB done in about two weeks after the baby is born.  Apparantely, the docs do not want to do it before due to the radioactive dye used.  The other thing that confuses me is how the clarks level correlates to the breslow depth.  Isn't the breslow depth, and level of invasion basically the same thing?  I guess I'm confused because in the grand scheme of things, the depth doesn't seem extremely deep, but the clarks level would indicate that it is.....

Also - is mitotic rate of "none identified" mean that it is zero, or that they didn't check for that?

Can anyone tell me how worried we should realistically be about this?  The doctor said "not to worry" and that she is at low risk for it having spread to her lymph nodes.  He also added that some doctors might not ever do the SNB for her situation, but that most would simply as a "standard of care".  I'm reading a lot of conflicting info - and it seems like every story I read concerning a breslow depth of over 1mm - has spread to the nodes.  She has no swollen nodes or anything, but not sure if this matters or not.....thanks! 

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aldakota22's picture
Replies 5
Last reply 8/9/2013 - 10:34pm

Wishing every fighter and their families a loving holiday.I know so many of us are counting are blessings just by being able to celebrate Thanksgiving.Something we would not have been able to do without Gods help and medical research advances made  against melanoma only a few years ago.One day soon I think we all beleive that there will be a real effective traetment for this killer disease.Beat the Beast.  Al

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dian in spokane's picture
Replies 10
Last reply 11/24/2012 - 9:37am

okay! Well, I couldn't really find anyone to speak up and say that they've had targeted radiation for a lung met, but that's the route I'm going for. I see them for set up today, and next week will start 5 treatments of SBRT, two a week, to kill off that single nodule in my right lung.

There is an enlarged lymph node in my mediasternum, which my oncologists do not believe to be melanoma (it is 19 mm, so bigger than the nodule we are removing) but has not lit up a single PET scan so we are just going to watch it with the same scans we use to follow the radiation success.

They are also doing a little genetic testing on my biopsy sample, looking for the CD 30 antigen, for a possible monoclonal antibody study in the future. And today I might look at how much of that sample is left for some other genetic testing.. maybe an anti pd1 trial.

I am also still considering a trial (if I can find one) that might be available post radiation, but I'm not all that keen on ANY trials this time around.

My radiation doc was very encouraging, talking to me about another melanoma patient he has who he's been treating for 10 yrs now, occasionally frying out new nodules as they appear and returning her NED status. She, like me, is one of those melanoma patients who have had single tumors pop up after years of remission. SO I like that.

This nodule, I think, is the perfect way to experiment a little and see if SBRT can be effective for me in the future as well. It is such a slow growing thing, that even if the SBRT doesn't work, I'll still have plenty of time to try some other thing in six months if it turns out not to be dying.

Since I haven't been able to find much on here from people who've used SRS for lung mets, I'll be on here reporting how things go for anyone who might want to consider it in the future. (Consider this a CALL OUT to anyone out there who HAS dealt with a single lung met this way, please chime in!)

I'm also interested in looking again at any trials that might be available for stage IV patients with no measurable disease. Something I could maybe get into after the radiation is done.

Thanks!

 

Dian in spokane

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