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.

Expand/ Collapse Topic
 
Replies By
View Topic
Scooby123's picture
Replies 5
Last reply 11/17/2017 - 12:42am

Hi all, hope you all as well has can be. Been a tough few months a lot happening at home and me on treatment.

 

went today for bloods had scans last week was not expecting results today but consultant had a look due to MRI on head was back but body was not. Head still clear tumour in head as now resolved no evidence of tumour., Body was not back but lympth nodes in chest 2 there was enlarged have shrunk. So he was pleased with results. Thyroid increasing dose to 75mg from 50mg. Side effects for me have been musle cramps in ribs and the trips to the loo . 

Been a emotional few months have been feeling down and my mum had a stroke. So if I have not been online much sorry.

There seems to be a lot of new people on line so I would say welcome and you have come to a wounderful place for support. There is lots on board who have great knowledge of this disease and very much needed.

Thank you all for all your support would not know what I would do without you all.

Scooby❤️

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 11/16/2017 - 8:18pm
Replies by: kst, Bubbles, Anonymous

I've just had lymph nodes resection and depending on pathology report the game plan is to continue with immunotherapy /anti-pd alone since latest research it shows it's more effective that the Ipi combo/ as an adjuvant treatment.My understanding is ,once you have used this option you can't go back to it. So my dillema is this : what if I need immunotherapy down the line  and this option is no longer available for me?I would like to keep that option open as long as possible  but I also want to be pro-active  with adjuvant treatment post resection  and leave nothing to the chance.Any thoughts?I am really torn ot treatment decision.

T.Chasse

Login or register to post replies.

jennunicorn's picture
Replies 27
Last reply 11/18/2017 - 12:49pm

Hi friends! Wanted to give a little update:

Last week I had my last infusion of Nivo, woo! Today I had surgery to remove the last armpit tumor that didn't respond to treatment. And the most exciting part today was the fact that the anesthesiologist at ucsf actually listened to me when I said I get super sick after and that was the main thing I was worried about. We devised a plan and I didn't get nauseous or sick at all!! 

Should get pathology back to see what that lymph node tumor shows, live cells, dead cells, who knows in about 10 days. They had to take 3 because they were clumped together, three musketeers were going down together I guess.

Hoping all of you are doing alright and welcome to the new friends. This is a great place for support and resources, has certainly been a great place for me the past couple of years. 

Fingers crossed I can use those magical 3 letters soon... will probably have to wait for the official NED status until after my next scan at the end of the year.

Hugs to all,

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Login or register to post replies.

MovingOn's picture
Replies 13
Last reply 11/29/2017 - 10:20pm

Hi All, Today I had an oncology appointment followed by my 3rd Keytruda infusion. My blood work is all fine and I’m not experiencing any significant side effects. My Oncologist said that going forward we will only have appointments and blood work every 6 weeks (continuing the Keytruda infusions every 3 weeks). Does that seem typical? I was sort of expecting to have blood work and an oncology visit before each infusion.

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

Login or register to post replies.

sweetaugust's picture
Replies 15
Last reply 11/22/2017 - 11:22am

Hi guys,

I haven't been on the site in ages.  I just haven't had the time with two jobs.  I wanted to update you all that I started the trial for Pembro (Keytruda) back on Halloween in 2012 and I came off of the trial back in January 2017.  I had a great response and am totally healthy.  So lucky! 

So I just wanted to check in and say hello and give a great update. 

All the best, Laurie

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

T.Chasse

Login or register to post replies.

Sandi Conley's picture
Replies 7
Last reply 11/16/2017 - 9:24am

I had initial diagnosis of melanoma in 1997.  It was on my right foot and I can't remember levels.  Had wide excision with sentinal node byopsy.  SNB came back clear.  No treatment.  Did follow up appointments for 12-13 years, then got lax and quit going when my dr moved away.

fast forward 20 years ..Jan 2017 went to ER with severe back pain.  CT showed mass on adrenal glands.  I had two lumps removed from chest area and under arm.  They came back melanoma.  (Previous lumpectomies were negative)

pet scan showed melanoma in bones, adrenal glands and soft tissues.  Went for treatment at IU Simon Center.  Was started on Opdivo/Yervoy treatment.  Was ready to get 3rd treatment when MRI showed mets to brain.  Stopped treatment.  Had radiation to brain.

In April, Started Tafinlar and Mekinist as I was positive for mutant Braf gene.  Went into remission very quickly.  Remission lasted almost 7 months.  Scans on Nov 7 showed cancer on spine and kidney.  MRI showed 2 small places in the brain.  I will have gamma knife radiation on them Nov 21.

my Dr has recommended I get a second opinion.  He says it is time for clinical trials.  I live in Indiana and I'm just overwhelmed wondering what the next step should be.  Any advice or encouragement would be appreciated.    Thanks, Sandi.     (68 yr old female)

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 11/15/2017 - 4:28pm

Can you take Tylenol before brain gamma knife? They didn’t tell me otherwise, but wanted to make sure.

Login or register to post replies.

newmanmark's picture
Replies 5
Last reply 11/20/2017 - 12:27am

I have been on Opdivo/Yveroy for the past year with very good results.  We are now taking a break and will likely wait and watch what happens.  My wife and I have put off having a third child due to my health and the treatments I have been on.  I was wondering if anyone has had the discussion with their oncologist or knows of any literature on the subject?  I am male so my concern is whether the treatment has any affect on my sperm and is it not advised to have children while this immunotherapy is still working inside me?  Or is there a period of time that I should wait before conceiving?

Thanks!

Mark

Login or register to post replies.

alciadudg's picture
Replies 1
Last reply 11/15/2017 - 1:00pm
Replies by: Anonymous

Hey!! My sister is diagnosed with melanoma 2 years back. Is it safe for her to conceive during the melanoma treatment? Last day, she told me that she thinks she is pregnant. Initially, I was happy to hear but later I remembered her condition. She is very weak after all the treatment. She was in stage 2 and now she is recovering from it. I have asked her to confirm it asap. I'm worried about the situation. She and her hubby were longing for having babies. She told me that if she is pregnant she won't miss this chance. She told me that she will undergo prenatal massage therapy from Toronto as she heard that it will improve all the functionality and reduces the pain. I don't know how to convince her. I just want to know if anyone here became pregnant with melanoma. Any advice is highly appreciated. Can this melanoma be treated with any kind of physical therapies? Please share your wisdom!

Login or register to post replies.

My Oncologist had a surpise for me today, after being part of Bristol Myer Squibb checkmate 067 trial of Ipi and Nivo or the Combination of both drugs for the last 3 years and 10 months, the company decided to let the remaining patients that where blinded know what they have been getting!!!! I have been a member of the forum for the last 3 years and 9 months, so many times I have been frustrated by people asking about what kind of side effects they should expect on Ipi/Nivo or either of the two Pd-1 drug and I couldn't respond from a personal point of view due to the fact that I didn't know for sure what I have been getting. I am happy to report that after 97 treatments I can finally say with 100% confidence that I am getting "Nivolumab" not placebo every two weeks. I feel like a huge weight came off my shoulder today!!! So many forum members have talked about having a plan if things stop working, well I can now put one in place with confidence!!! This is also my first offical post ever on the forum and it feels pretty good. Love you all, even the Anon's!!! Ed

Login or register to post replies.

Newmanbell's picture
Replies 1
Last reply 11/14/2017 - 3:48pm
Replies by: Anonymous

What a morning it was for us.  Our Oncologist in Syracuse set up the appointment for us to meet with Stephen Hodi (the 2nd time) to see about future treatments and recommendations.  You all know the anxiety about such an important meeting, in addition to taking two days off of work to drive the 5 hours there and back the next day.  When we arrived, Dr. Hodi greeted us nicely but he was never sent a thing from our Oncologist.  No records, zero which included the recent MRI this past week.  He could not advise us whatsoever.  Talk about us being very upset.  We clearly had Stephen Hodi listed at our home office to be sent information.  In the end we did get the MRI report, thanks to a very efficient administrative assistant, and he was able to tell us the spot on the liver is nothing to worry about and he is present NED (he is stage 3B).  He was truly a doll spending such an amount of time with us when he really didn't have the data he needed.  Believe me we had some calls today to our doctor's office.  This can never happen again.   We just drove home from Boston, it is 3:40 in the afternoon, and already I am in pj's in bed.  The roller coaster just did us in.  What should of been a very positive meeting, turned into a stressful morning.  Stuff like this should not happen.

 

But, in the end NED for another 3 months.... relax and enjoy those words, right?

Donna

Login or register to post replies.

sister of patient's picture
Replies 19
Last reply 11/17/2017 - 12:43am

Hey all - Couldn't wait to share this news, though my sister Leisa had her first clear scan in July, Oct. 30 scan is the same - she is totally clear and the onc has finally said those precious little letters - N.E.D.!!! Yayyy!!!

Have said it before but can't say it enough - thanks to so many on this board - you got us through it!!!!!

Best always,

Barb

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I am leaving this forum and hopefully for good. My concern started 1 month back with my moles. I noticed one being a bit odd in the shower and freaked out a little. Naturally for me i started googling (bad choice as most will tell you). I had several sleepless nights and started loosing weight due to pure anxiety. I felt somehiw how i was going to die. I consulted two nurses, one specialised in moles of which bith told me not to worry and watch for change and the one specialised in moles referred me to a dermatologist. During the time (1 month) that i had to wait for the appointment my life was pure misery (not exaggerating). I didn't eat i didn't sleep all i got some comfort out of was googling my symptoms. I had convinced myself i was dying. Any sign of cancer git me thinking about it. But then somewhere along the line i realised how pointless worrying was and if i indeed was going to die i needed to appreciate life to it's fullest, And that is what i did. I enjoyed much great time with my family and friends and noticed the beautiful aspects of life. Yesterday the time finally came my appointment and in short: Nothing wrong. Like 100 kilograms falling off my shoulders. I didn't have cancer i wasn't going to die! But this post isn't about that. This post if for all of you on here. Wether batteling cancer yourselves or having someone close to you having melamoma. Remember to enjoy life to it's fullest no matter if you have 60 years or 60 days left of it cause one day we will all die and no one deserves to die regretting a single thing in their life. So instead of worrying do what makes you happy, do not let cancer beat you down. I am only 17 years old and hope to live another 70 good years and if i some day receive a cancer diagnosis i will fight it, and i will keep fighting until they throw dirt upon my hands and i hope you all can do the same and win your battles.

Thank you and goodbye.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 11/15/2017 - 10:14am
Replies by: cancersnewnormal

Hi,

I am a 30yo with a history of BCC at age 20.  Over the past six months, I noticed a mole changing (becoming raised and it was occasionally itchy).  It looked different than other lesions on my arm.  My doctor agreed that since I have a lot of freckles/moles that don't bother me, it made sense to get this one removed if it was bothering me.  I just received a preliminary pathology report and the findings are unclear.  Apparently the case is being reviewed by several consultant dermatopathologists to come up with a consensus.  I have to wait at least three weeks to review the final pathology and my surgeon isn't even sure it will be ready at that point.  I am driving myself crazy trying to figure out what features in the report are concerning and what features are reassuring.  Can anyone help provide some insight?  The report is as follows:

 

Left Arm: ATYPICAL MELANOCYTIC PROLIFERATION - PRELIMINARY REPORT ONLT

Sections show an ellipse of skin with an intradermal melanocytic proliferation composed of epithelioid melanocytes with vesicular nuclei and prominent nucleoid.  The melanocytes possess abundant pale slightly pigmented cytoplasm.  They are predominantly arranged as nests with occasional single cells in the dermis with a periadnexal growth pattern.  Maturation with descent is lacking.  A perivascular and interstitial lymphohistiocytic inflammatory infiltrate with melanophages is present.  The melanocytic proliferation appears completely excised within the planes of sections examined.  The histopathologic findings are unusual and although the lesion may represent an intradermal Spitz nevus, the case will be reviewed by other consultant dermatopathologists in order to obtain a consensus opinion.  An addendum report will follow.

 

Is it pretty common to have a preliminary report issued and then have some consultation?  (i.e. am I worrying for nothing because this happens all the time).  Or is there a real chance there could be a bad outcome here?

Login or register to post replies.

Pages