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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I've had 3 doses of anti-pd1 so far.  After the 2nd dose I started to notice an increase in occular migraines.  I've had them before but not very often.  They also started about the same time I got a horrible rotten headcold.  I still have tons of sinus pressure.  I talked with the fellow at my last appointment but they didn't seem very concerned about them at all.  Has anyone else experienced this?  

So far it seems most side effects have been pretty minimal.   Some fatigue, itchy skin, etc.  

Thanks,
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Ann from Iowa's picture
Replies 19
Last reply 3/19/2013 - 12:49pm

So this will not become to lengthy...go to my "Ann from Iowa" to read of my husband's melanoma history.  In short he has been NED now for 2 1/2 years, Stage IIIB, Leukine treatment for 1 year and radiation to auxillary, left arm.  He has been a smoker and chews tobacco since he was 14 years old and is now a very healthy 69. 

We went for his 6 month check-up last Friday and his chest x-ray showed lungs clear, no other problems.  Skin exam done by a lady other than the doctor and she discussed his smoking history.  He was told when they found the melanoma in his lymph node, 5 cm with extranodal extension that he must quit his tobacco use.   Well, that has not happened, the old adage that "I am invincible."

The Dr. a melanoma specialist came in the room, did not say one word as to his good report but began to lecture him on his continued use of tobacco, and I feel he has the right to do this.  But what stunned me was that he told my husband that if he continued his smoking and chewing tobacco he will not treat him in the future for ANY cancer that according to him will come at some time or another surely within the next 10 years.  The Doctor said he had previously been a smoker and quit and if he could do it so could anyone.  He turned to me and said I was to make him stop.  He then left.  End of  appointment.  To make this story complete, within a half an hour my husband was smoking a cigarette and has not looked back yet.

I am the one needing the help as I just don't know what to do as to future follow up appts. with this Dr.  Since it has been 2 1/2 years since he ended treatment all he gets now is a chest x-ray and visit with the Dr.  It  seems to me that if my husband does not stop these habits that we should not go back for further appts. as I am taking him at his word, he would not treat him anyway if he were to find more cancer or a smoking related cancer.  Should we just go to his local dermatologist now or should I at least go by myself and talk to him for advice.  Frankly, I am so upset by this I cannot see straight and certainly do not know what to do. 

 

Because my husband was told that the Leukine treatments that he took have been proven to not be of any benef,  but his melanoma has not returned after they just about gave him a death sentence when it came back in his lymph node I think he has taken this lightly and he truly is addicted to tobacco as he has watched his 5 brothers and sisters die young from COPD and heart disease but still has not stopped .  How can you not take that seriously.  In any case, any advice would be appreciated.  From my perspective if all doctors were to quit treating patients because they refused to either lose weight, quit using so much salt, go on a special diabetic diet for all the other bad health issues, many people would no longer have a doctor to treat them.  Just thoughts that are running through my mind as I try and deal with this.    I read daily to try and learn about melanoma just in case his would return.  Education seems to be the best route and this site has so much good information along with the support.  Thanks for the ear.

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/19/2013 - 10:12am
Replies by: hbecker

Does it work?  I tried to send a personal message to someone and it didn't see to go through.  Also, if it did go through and there is a response, where does that show up for me to see it.

 

Thank you

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mark1101's picture
Replies 5
Last reply 3/19/2013 - 9:48am
Replies by: mel123, mark1101, 94z28joe

I am 1 week in to ipilimumab for stage IIIc melanoma which involved 5 left axillary nodes.  These have been removed and the original site margins have been cleaned as well.  I was curious about others here who are in or were in or are considering entering this trial.  What are your experiences and thoughts?  I am in arm C and received my first infusion of 3mg/kg ipi a week ago.  So far I am feeling good, but feel paranoid waiting for some symptom or another jump up and bite me.  Sometimes our imaginations can be our worst enemies.

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Tim--MRF's picture
Replies 0

I heard from the IT team late yesterday and here is the update on Chat.  We are obtaining an independent Chat program to implement as an interim measure while the vendor for our current chat program works through whatever bug has killed this function.  Hopefully this new program can be implemented in a way that is relatively seamless.  They are doing testing on the new system and hope to have it live by the end of the day today.

Tnis new program may not have all of the functionality of the old program, but at least it will work!

Tim--MRF

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meeshka6059's picture
Replies 4
Last reply 3/19/2013 - 5:02am

update: now dad is not talking at all. he does grunt, cough, and sigh. i think that is his way of communicating. he makes good eye contact. i am pretty sure he hears us and understands. i am taking all of your comments to heart and it is comforting. thank you. i appreciate it and i am grateful.

mom and i are embracing each other and filling their home with love.

blessings and love, ~michelle

 

Suddenly Dad is too weak to get out of bed. He can barely talk now. He is off of all treatment. Hospice is on board and full time aids. We are so sad but there is a lot of love surrounding us.

We wish we knew how long. No one knows.

We wish he could tell us what he is thinking. He either can't. Or won't.

This is so hard.

Sending love and light to all. ~Michelle

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darktranceeee's picture
Replies 3
Last reply 3/18/2013 - 11:02pm
Replies by: Janner, darktranceeee

A few weeks ago I was confused, scared and paranoid about a mole/red patch in the sole of the foot, and posted pictures, those threads are burried in the 6th or 8th page of this board. I did manage to get a hold of a dermatologist who biopsied it. Biopsy report came back and I am happy to say that it was plantar hemangioma dilated blood vessels.

I just wanted to update you guys and I heartily thank you for your support, helped me stay calm. Everyone here is so brave with strong mind and thoughts that helped me stay positive. The biopsy waiting period wasn't very easy..

I once again thank everyone who responded to my post. I wish you all the best. I would like to donate something to this board and I will find out more about it here.

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thrashter's picture
Replies 4
Last reply 3/18/2013 - 8:46pm
Replies by: aldakota22, Zan, Tina D, hbecker

After 3 rounds of Biochemo my PET scan showed 1 of 2 unoperable tumors gone. No other tumors found hoo-ray. Surgery scheduled for 28th to remove remaining tumor at collarbone area. What a huge relief to find out before surgery.

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Ali's picture
Replies 14
Last reply 3/18/2013 - 5:14pm

Hi guys, just wanted to share my good news from last week.  Brain MRI remains CLEAR (25 small tumors in there in June, all disapeared by September after one dose of IPI and monthly Temodar).  Two adrenal tumors that we radiated in January are dying off.  One tumor in armpit still growing slowly.  That's it folks!!  We are deciding now what to do with the axillary tumor, most likely radiation as my tumors seem to respond well to that, and there may be some benefit to the immune system treating it that way. 

I am full of gratitude.  I often wonder at how amazing it would be to live like this for many years (is 50 more too much to ask?).  I am seriously just so happy to be alive.  Every day.  

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Wendi Lynn's picture
Replies 5
Last reply 3/18/2013 - 4:23pm

Hi Fellow Warriors and Caregivers!!

Although I don't post often, I do read daily.  I weep with the rest of us as we lose a loved one from the group and I cheer with those that share wonderful news!  My profile states my history, so I won't give the background here, but I'll start with my present issue.  I had scans on 2/7 and although I haven't seen that actual report, a mass was found on my liver (and some possible lymph node involvement).  Biopsy confirmed metastasis to the liver.  My new oncologist was kind enough to call me and give me the information (instead of making me wait to come in and see him), and informed me he would be taking my case to the tumor board and speaking with his colleagues at UCLA as well as testing for the BRAF mutation.   So, to make a long story shorter...I am now scheduled for a consultation with a radiation oncologist to discuss treatment on the 25th.  Has anyone experienced this?  I thought this would be a one shot deal, but after calling to schedule the appointment, it sounds like it could be multiple radiation sessions?  Just curious as to what I'm in for this time around.  I'm all about the PMA but can't help but be a little scared. 

You all hold a special place in my heart.  It's hard to relate to others how important this site and you people are to me and how much information I've gained from you all.  Keep up the fight and great work!!

Wendi

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bikerwife's picture
Replies 14
Last reply 3/18/2013 - 8:06am

Lynn was put to sleep at 8 this morning for gamma knife. It lasted till 6 this afternoon. When they tried to wake him his heart messed up and his breathing couldnt get  off ventilator. Started sending out pray request he came out of it and is breathing on his own. We have to stay over night though. please pray for us

What God leads u to he will. Lead you through

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Amanda's picture
Replies 3
Last reply 3/18/2013 - 8:04am

Hello all, just wanted to let others know, that Randys tumors that we can see and feel, (under his jaw bone, another one right below on neck, and a few on the chest wall) all have gotten noticably smaller.  Especially the two under the jaw bone.  There is the bigger one that was portruding out and was very noticable...and a the much smaller one below it.  The larger tumor on the jaw is almost flat with the normal contour or the jawline, and the smaller one feels tiny.  This is all after only two infusions of merk-3475.  We go for next infusion tomorrow, and will confirm what the Dr. says tomorrow as well.  But we can literally see the difference, so hoping it continues.  I will confirm tomorrow with you all, have a wonderful night

-Amanda
girlfriend of patient randy, stage 4, no primary.

"Give thanks in all circumstances"

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POW's picture
Replies 17
Last reply 3/17/2013 - 9:57pm

My brother passed away peacefully in hospice care yesterday. I wrote in detail about his passing in the "Off-Topic" forum.

Mike is at peace now, together in Heaven with his beloved Margaret. Our family will be OK. Thank you all for your help, advice, and support over these months. 

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cld's picture
Replies 9
Last reply 3/17/2013 - 9:18pm
Replies by: Tina D, cld, jcmp, aldakota22

I had surgery in December and it's returned already!  Sigh!  I need Al to tell me to beat the beast!

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I ran across this program OnDemand on XFinity.  It talks about understanding your genetic code but has a segment about a fellow with stage IV melanoma taking Zelboraf.  I found it online at this location, too.  NIH is the sponsor.

http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

http://www.MelanomaResources.info

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