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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mom3girlsFL's picture
Replies 5
Last reply 12/9/2015 - 3:20am
Replies by: emagdnim83, Tim--MRF, Anonymous

Happy to report as of Nov 19 my PET impression reads:

1. Excellent response to chemotherapy. Interval resolution of hypermetabolic activity associated with retroperinoteal adenopathy and significant decrease in para-aortic node size.

2. Mild increase activity seen in the mid thoracic spine and spleen, consistent with a hematopoietic response to chemotherapy. 

I sure had a lot to be thankful for this past Thanksgiving! 

These results are after being on Tafinlar/Mekinist combo for a little over a month!

So onc basically told me "It's gone!"

Having MRi on thoracic spine today and we are keeping eye on enlarged spleen.

Now...here's where i need help...

Am I really 'cured'?  Will I be on some form of meds forever to keep mel away?

Thanks for your help and my apologies if my questions seem naive...

Do not fear tomorrow, God is already there.

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Jubes's picture
Replies 3
Last reply 12/9/2015 - 5:23am
Replies by: Jubes, Bubbles, BrianP

Hi all

had my 3 monthly Pet and ct scans yesterday and my lung tumour has shrunk and SUV decreased from 10.2 a year ago to 4.5 in September to 3.5 this time. This is great as I had to stop pembro in August after 11 months  due to really painful spondylitis through my whole body. Meanwhile for the spondylitis I have been on a combination of steroids and anti inflammatories ( ketoprofen and plaquenil) and am gradually weaning off prednisone. The oncologist is really happy and rheumatologist is going slow on the side effects and will only pull out the infliximab if all else fails. Thanks to all of you who have helped me with info and moral support!!

anne-Louise 

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Cmako44's picture
Replies 4
Last reply 12/10/2015 - 11:36am

Does anyone out there have mets in spine, ribs pelvis, femur, etc? My sister is 31 and just recently diagnosed with stage IV melanoma in her spine, ribs, pelvis area, and a couple other places.

She is seeing a specialist (Dr Luke) at Univ. of Chicago and getting on a plan within the next couple weeks. I'm wondering if anyone can share stories of having similar mets in only bones or someone that may have seen Dr. Luke and has any treatment stories.

Ever since her diagnoses (which caught our family off guard flipping our world upside down) I have been trying to do research on drugs and trials. I am so scared and she is too, however we are trying to remain as positive as we can. Hopefully someone out there can relate to her that can give me any feedback..someone who may possibly have a success story or be NED who was stage IV with cancer in the bones. I have read that it is harder to treat in the bones as well which I do not know if that is true or not. I would give anything and everything for this to go away and her to be NED.

God Bless. 

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jennunicorn's picture
Replies 35
Last reply 12/10/2015 - 1:36pm

Hey all,

I am 28 years old with stage 3b Melanoma. I have just talked with my oncologist today about treatment options, and since there are no open clinical trials for my stage at the moment, the 2 options were watch and wait or Yervoy. I opted to do Yervoy because the anxiety of the watch and wait would drive me nuts. 

I know everyone has different reactions and experiences with their treatment, but I am wondering if anyone else out there that is currently on or has done the Yervoy 10mg/kg treatment has any advice?

I've read that there are usually some pretty bad stomach and intestinal side effects. Are there certain foods that seem to help people vs. foods to avoid when doing treatment? How do you typically feel during and right after an infusion?

This is all kind of scary and weird for me, but I am a healthy young person besides this whole Melanoma thing. I'm hopeful that I will get through this treatment and keep my fingers and toes crossed for no recurrences. 

Thanks,

Jenn

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jahendry12's picture
Replies 27
Last reply 12/10/2015 - 8:32am

Hi All - I'm friends with Artie on fb and today he posted that he is now in the hospital in ICU and is very weak. 

Just wanted everyone to say a prayer for him. 

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IvanaDim's picture
Replies 6
Last reply 12/10/2015 - 4:43pm
Replies by: IvanaDim, tschmith, BrianP, Fen

Dear melanoma colleagues... I've been reading and learning so much from u all for months now, and you are amazing source of info and hope... Now this is my story..any advice is more than helpfull

My father (59 years old) has metastatic melanoma, primary on rectum, spread to liver. The doctors recommended urgent surgery with which they removed the rectum and the lymph nodes that were affected with cancer cells. He has stoma bag now. The surgery was on July 2015.

BRAF and C-KIT tests are negative.

We are from Macedonia - small country on the Balkan with list of cancer drugs not updated for 8 years no, so immunoterapies are not available even if you can buy them out of your pocket! :-(

We managed to find immunotherapy keytruda in Greece (near my country 2h by car) and started keytruda in August. Since the immunotherapy is very individual and slow process, the oncologist can not guarantee anything at this stage. In october, before he takes the fourth dose he felt chest pain and the oncologist suggested CT scan to revise the situation. Unfortuntelly the liver metastasis seemed to be bigger and we did 2 chemoembolizations now. Last week he took the 6th dose of keytruda combined with DTIC.. Next is another chemoembolization. The dr is stopping with keytruda now..proceeding DTIC.

I really need advice what to do next, all these drugs cost a lot of bank loans and selling assets so far, but it is all worth if it helps. I cant believe that there are no more options.

Can anyone recomend some clinical trial that might be appropriate?

Sorry for the long post....i had to share my pain with people that really understand..My father is my all..

God bless you all...thank you for any advice in advance

Ivana

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Kare83's picture
Replies 11
Last reply 12/9/2015 - 5:10pm
Replies by: Kare83, Janner, Ed Williams

Hi, I'm Kare. I had a stage 2 melanoma removed a few weeks ago, followed by a wide-margin excision last week.

My doctor told me it was stage 2 - the mole was on my upper right back (on my shoulder blade).

I know melanoma can always come back. I am concerned as everything I have read tells me that stage 2 melanoma usually has a growth of 2mm+

Yet on one of the cancer info sites (might be this one, I can't even remember where I read it now) it says a melanoma only needs to be 1mm to have entered the bloodstream?

So I'm not sure what this means? Is there anything more I need to have done?
I have been put on 3 monthly checks now.. as melanoma also runs in the immediate family.

Also, what is the difference between Stage 2 and Level 2? I have read some people talking about level 2 and not sure if it the same as Stage 2 or not?

Just want to make sure I have all bases covered. I am getting frustrated with people around me at the moment.. They think it is all over yet I am on edge and feel like it can be discovered elsewhere any day :( I know stage 2 is still early to have .. I don't feel I have the right to really even talk about having melanoma, considering what everyone else is going through.. I just want to make sure I understand everything I can about it.

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miramira's picture
Replies 3
Last reply 12/15/2015 - 11:13pm

Hello everyone, my name is Monica, I am from Czech Republic , my English is not very good.
In July I had melanoma, Breslow 1.3 mm , Clark III . No ulceration , 1/1mm2 mitotic activity. My sentinel node was clear. Stage 1B. I'm still scared. Please, is there someone who had breslow over 1mm and still lives - more than 5 years, 10 years, 15 years, 20 years - no recurrence. Thank you

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Just thought I would let everyone know who might need it that my doc had me take magnesium citrate to clear up my constipation. It worked. Took about 8 hours but for just the first activity of it I stopped up the toilet. Fortunately I had another bathroom for the second activity of it. That was Friday night and my last bm had been Monday morning.

Well due to the opied induced constipation I couldn't eat much because there was no room and my stomach was all messed up. So I kept getting even weaker. After the clear out my stomach is still awful so I haven't been able to eat much so even weaker.

Now I can hardly stand let alone walk across the room. So I had to cancel the Houston trip tomorrow and started with the message to my local doc to do the scans here. That really sucks. I was hoping the Houston doc would have a good plan b for me.  Supposedly they will share the scans but I have doubts what they will come up with. I also wanted to know what the Houston surgeon had to say about my spine.

So like a guy posted a little while ago about giving up. I'm finally to my breaking point. I feel like crap. I'm very weak. I can barely walk a little. These opioids and pain are making the normal sweet me kind of terrible to be around but my parents still love me. This abraxane is starting to tear me up with the throwing up and stuff. I'm able to feel new pains almost every day and even a new back bulge I confirmed with my doc. The ldh dropped nice after the first dose then went back up. If I had hope things would get better I might be able to continue but like dad says I'm in misery every day. So I'm going to hang on to see the new Star Wars which will be 30 months for me fighting this disease then we'll see if it's time for this warrior to call the battle well fought but done. I was hoping I could get the pain pills changed to marijuana or something better thst might go a long way helping me but I'm not getting anywhere. I need to look into those other pain things yuns said.

Sorry for such a negative post but it is what it is. Of course other people have it worse. Like Shane in Chicago. But at least he has stuff there doc's are willing to try. My local doc said he could do tvec to the new back bulge but not the huge shoulder tumor or others. Plus he had doubts if he could get insurance to approve it with keytruda. So I just don't have hope anymore or even the hope that hope is coming. So like a lady just posted about her brother diagnosed at age 45. Yep i was diagnosed at 45 too. I'm 48 now too. It's just so hard to fight and having fought it almost 30 months with the whole time new stuff showing up is getting too much to bear. I know I've posted positive thoughts of keep fighting and what I've been through having to eat a half a bite at a time. So what if the next half bite was ten minutes later just keep at it. Or taking half a step then another. I meant them at the time. Now I'm a very tired warrior with no hope anymore. Sorry if I'm letting anyone down.

Artie

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susanr's picture
Replies 6
Last reply 12/12/2015 - 10:19am
Replies by: susanr, jenny22, Fen, Cynlee, CHD

My brother passed away from melanoma 3 yrs ago today.  He was only 45 yrs old.  Fought hard for 3 yrs.  Left a wife and 4 children.  My brother was so smart, He could fix anything but could not fix himself.

I have not posted in awhile. I do visit and appreciate some of the old contacts help that really gave good advice and well wishes.  I see some of you still on the forum and some not.  It is hard to read many posts because of how this disease destrioys your life but also the loved ones. 

I still wake up at night thinking this was a horrible nightmare...but reality sets in. 

Holidays of course suck now.

I have children myself, nieces and nephews and hard to put on a happy face during Holiday season and birthdays.  The loss of my brother destroyed my family.  Life won't be the same , I say... just have to live like this until its our time.  I did not want  to see my parents have to bury a child or see my brothers wife suffer more family loss and  have to see his kids live without a dad...but it happened.  Just wish I tried to keep ahead of the eight ball when it came to melanoma...but it sneaked up on us ..and I tried ...but too late.  Even being  a medical clinicain myself did not help.

I read many posts and want to say my thoughts and good wishes are with you all.  I love reading NED posts. Gives us hope. I worry about my brothers kids and my own children developing melanoma so need to still be on top of melanoma.  Only reason I try to be on top of the research.

I remeber all who replied to my post when my brother passed...and i still look out for you all.  I give a prayer or a high five when it is needed. 

One last thing.....When I see what is going on in  society or the world....horrible events happening and you go in the stores now during holiday season and people are so rude and don't appreciate other people, I remind myself about all of you and realize how precious life is and makes me block out all the negative energy......gives me a sense of what is important.  When I get down and out, I go on this forum and gets me back to myself.......

I thank you all for helping me..........

Hope for a Cure....

Susan smiley

 

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/8/2015 - 5:35am

Ok a little embarrassing thats why im posting ANON. Ive had hemmroid surgery years ago (2012) and also a colonotomy. ( nothing unusual from those tests). Was diagnosed with melanoma this year. I passed a stool today and I noticed there was some red blood on the stool and also on the toilet paper. It was a little painful also by the anus opening when the stool was passing. I had a pet/ct scan 2 weeks ago and nothing unusual was found. Im going to mention to my oncologist but do you think this is anything to worry about. This wasnt the first time Ive seen blood in my stool. I remember seeing in october also. For now ANON

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knittingirl's picture
Replies 3
Last reply 12/7/2015 - 12:16am

Hello everyone,

I have started a nipi/ivo treatment in October. Until now I have some itching, dry mouth and hyperthryroidism. I took some beta blocker to slow down my heart for  a month.

Now I have hypothyroidism and I am very tired. Today my doctor prescribes me some medicine to balance the hormons and I am wondering how long it will take to feel better. I am a teacher and it really impacts my job.

Also anyone has some tip beside regularly drinking for the dry mouth ? As I talk a lot in front of the students, I have to stop frequently to moisturize my mouth.

During the last two opdivo infusions( not the first one) I started to feel pain in my legs and made the nurse stop for a while the infusion and started again at half the pace. She was surprised and I was wondering if anyone had the same reaction.

The good news is that my tumor has reduced by half and I have one more infusion in 10 days ( no intestinal problems so far).

Thanks,

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/8/2015 - 1:56pm
Replies by: Anonymous, chrisholder
Bearsworth's picture
Replies 5
Last reply 12/9/2015 - 7:04pm
Replies by: Bearsworth, Gwenmorgan, kylez, arthurjedi007, Anonymous

Image tried just about everything. I am to the point I can't sleep at night. This itching is driving me crazy. It's all on the inside of my arms, my neck and all over my back. I have tried Benadryl, Zyrtec and all the creams. The creams are a very temporary fix. Has anybody had any luck managing this?

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jaco's picture
Replies 5
Last reply 12/7/2015 - 8:21am
Replies by: Anonymous, JustMeInCA, mjanssentx, Scooby123, gregor913

I'm having one of those days where I'm just tired of all the drugs- I'm Stage 4 and they have me on the Combo drugs.  I'm into my 3rd month and yes they have reduced the tumor under my arm.  But now eating a hole in my stomach- ulcer.  The pain I get with that is nuts!! Burning, nothing seems to help.  They have me on an ulcer med- not working - I see my Oncologist this week so we will try something else.  I just hate all the drugs.  I was never one to grab a pill, tried to stay away.  I just get mad, oh ya don't you just hate cancer it sucks  Do you ever wonder what would happen if we just quit it all, yes I know what would happen, but eventually we all die. I'm just having a "pitty party" and tomorrow will be better.  Sometimes just hard to say to my family that I just want to quit, I now you will understand.  Tomorrow will be great!!! Thanks for letting me vent.

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