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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Anonymous's picture
Anonymous
Replies 1
Last reply 5/27/2014 - 10:53pm
Replies by: Anonymous

When does Long Term Care insurance come into play versus medical health insurance?

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DUSTILANE's picture
Replies 3
Last reply 5/27/2014 - 11:03pm
Replies by: SteveH230, GrammyM, POW

Can anyone tell me about this? 

 

I was doing some looking on the internet about my husband losing so much weight with this cancer and I came across this....

 

I am so confused and scared.  My husband just won't eat.  he is continuing to lose weight and has just lost interest in everything.  All he does is sleep.

 

 

Dustilane

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tcell's picture
Replies 7
Last reply 5/28/2014 - 3:28am
Replies by: tcell, Anonymous, Mat, BrianP, cpeters2498, hbecker

Hi,

I couldn't post this earlier as I had to celebrate with friends and family but wanted to give all of you some good news and hope!

For those of you who don't know me (I have not published my story in my profile) I am a stage IV newcomer, dx in early Feb of this year, amost died in hospital as my mel was dicovered pretty late but with god's help and some luck survived and was put on the GSK combo right away as I am BRAF+. Tumor burden would not allow waiting for Ipi to kick in. I am 35 years old and father of a 2 year old daughter.

I am being treated at Vienna university hosptial (Austria) by a group of people specialized in mel.

Had 2 large mets on liver, one on left adrenal gland,, lots of small mets on pleura and and peritoneal, one on the left lung, 2 bone mets (TH-10, hip bone).

After 3 months of combo with full dosage, no side effects I got the results of the first CT scans last Friday:

- peritoneal and lungs are clear
- all other mets on vital organs show considerable shrinkage (no idea why there is no percentage in the report)
- bone mets are stable

Going ahead with BRAF / MEK. hoping and praying that they will keep doing such a great job for a while. Anti-PD1 might become available in Europe outside of trials in fall of this year but I hope to be able to stay on BRAF / MEk for longer!

Aside from the meds I have changed my diet completely to mainly vegetables and fish, meat only exceptionally. I am taking vitamin d and k as supplements.

I often read in posts in this forum "My husband is on BRAF / MEK now which should keep him going for 10 months"!"
I cannot say how long it is going to be fine for me but I am really actively trying to avoid to let the statistic median value enter my mind that strongly! My oncologist told me of people who have been on Dab only for more than 2 years and still going! I am aiming for the best not for the average!

I know that immunotherapy can be much more long-lived than the inhibitors but do not underestimate what they can do for you. For me they have saved my life!

All the best,
Chris

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Just wondering....

I've now gone through two winters in Boston while on the anti-pd1 MK-3475 treatment for my stage 4 melanoma.  I have noticed that in the winter my side effects seem to be worse than in the warmer summer months.  I feel so much better in the warm months and experience almost no side effects.  Where in the winter, there seems to be a pressure or squeezing on my organs.  Has anyone else noticed that in the dry, freezing weather that their side effects from the treatments seem to be worse?

Laurie

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/28/2014 - 3:03pm
Replies by: Ashley

So, have ipi-related colitis after 3rd infusion.  Within 36 hours of the start of a period of diarrhea not helped by Immodium, I start on Prednisone (now at 100 mg/day) and Endocort, i.e., got on it quickly.  Diarrhea stopped within a day.  However, still having bloody stools (more bright red than dark, but some dark) at each movement.  No abdominal pain other than minor cramping around movements.  Have been on steroids for about 2.5 days.  Should the bleeding have stopped by now?  Of course, I'm in touch with my melanoma specialist and scheduled for a CT scan and colonoscopy in the coming days.  Just curious if anyone has useful experience to share.  Thanks.

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Eva's picture
Replies 2
Last reply 5/28/2014 - 5:17pm
Replies by: Eva, Janner

Hi there, 

Fistly, I do not have melanoma. Several years ago, I did have a large BCC in a birthmark on my lower back, with very little sun exposure to that area.  Lots of AK's frozen in my face surely due to sun damage (farmer tan).  I spent a major part of my 61 years outdoors, some in the tropics and also at high altitude.  Mostly, but not completely covered skin...  

Sometime between my 6 months skin checkups this "keep an eye on this one" old atypical mole on my middle back changed color to black and was biopsied.  The nurse called me and said it was a mildly dysplastic nevus with clear margins.  So no further surgery was needed and I received a 3 months appt for next skin check.  When I left the derm's office it was more like - pending biopsy report, we'll see you in a year and I was proud of the upgrade! I could even cheat this summer and go out between 10 and 4.  After all next checkup was a year away...

So, are sites of already removed dysplastic nevi still a concern?  Pretty sure this was the only one I had.  Could be the derm being very causious since I did not notice the color change.  

Still got to find a perfect mirror combination to make inspection possible without contorting myself...

Trying to take a picture of my back with my phone for this dyslexic person may prove futile for a while longer. At least it's comical!

 

 

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/28/2014 - 5:34pm

Is there anyboy who's been down this trail  thats's around to talk about it ?

Sometimes no news is the best news!

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Aussielyn's picture
Replies 2
Last reply 5/28/2014 - 5:48pm
Replies by: Aussielyn, tcell

Just wondering if anyone knows definitely whether or not turmeric is contraindicated when on GSK's dabrafenib & trametenib . I have been putting some in my juices (fresh) & having powder in water as well. My chemist & Dr think it's ok but are not 100% sure. Thinking now it's best to stop till I find out for sure. 

Would appreciate a response if anyone knows. Thanks,Lyn 

Heal with every inhalation and let go of cancer with every exhalation.

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SamC 23's picture
Replies 0

Yesterday I had an EBUS performed to check my lymph nodes. A biopsy was done and showed no signs of MET!!! A wedge resection was completed to remove the node from my left lung. It's still unclear what may have caused the growth and enlarged lymph nodes. Possibly something I inhaled that could have caused this infection.

Kudos to St Lukes Hospital Bethlehem, PA and my Thoracic surgeon Dr. Burfeind. I can not say enough about these people. Now time to recover and be thankful for everything in life! 

Keep a positive attitude towards life, don't let yourself get down in those moments. Remember the people that love, care, and that are praying for you. In the end you will be the on succeeding!

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Marianne quinn's picture
Replies 4
Last reply 5/29/2014 - 1:42am
Replies by: Anonymous, Marianne quinn, RJoeyB, BrianP

My husband was in the interferon vs. ipi trial for stage 3c. He had melanoma under his thumbnail with 2 nodes.  He was in the  10 mg ipi arm At week 11, he had a CAT scan whioh showed a 2 cm lesion in his liver which was confirmed by biopsy. Very distressing and he was removed from the trial as the onc said the ipi did not work since he was NED before the ipi. On May 6, he had ablation of the lesion which was smaller than the CAT scan. It was a tough surgery in that he had numerous adhesions of his liver to his diaphgram due to being hit by a drunk driver over 40 years ago! They had to remove the adhesions as well as microwave the lesions. He is recovering pretty well now, but there was a lot of pain due to the adhesions. The ablation itself was not that difficult.

He still has side effects from the ipi of a rash and he has to watch what he eats.

From this forum, I am sure that the ipi did not have an adequate chance to work. He will not get the maintenance doses of the trial which may or may not be a blessing in disguise. It is pretty distressing when you get tossed from a clinical trial with no further guidance. He signed 28 pages of disclosures, but it was never disclosed what the protocol should be after being removed  unwillingly from the study. Ipi has the potential of having long term, late appearing, serious side effects and I think it is immoral that the trial makes no provisions for monitoring especially when he took a dose that caused deaths.

Hopefully, he is NED after the surgery. I think it makes him ineligible for PD1 right now. CAT scan is next week. 

My questions are- is he really an ipi failure?  When would he be considered an ipi failure? Has anyone had good luck with ablation of liver lesions? He actually felt really good before the surgery and we were surprised that he had mets. Interestingly, he had many dysplastic nevi / age spots and they have all faded so we know that the ipi worked on something. Younger looking skin with Yervoy- a new marketing campaign for Bristol Myer Squibb.

When I read other posts, I realize that my hubby is luckier than many people with melanoma. This forum has been a life saver for me and I am grateful for all the support and information.

How are you doing Heidi with your trial? Please let us know.

Is anyone at MRF to the oncologist conference this week ? I would love to know the preliminary results of the trial my husband was in.

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Anonymous's picture
Anonymous
Replies 0

The 2014 ASCO meeting starts tomorrow. We can expect a huge amount of data to be shared among oncologists (and us). Like the previous year's meeting, advances in immunotherapy are expected to be a major topic of conversation.

It should be interesting.

 

Good luck to all.

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Teochasse's picture
Replies 1
Last reply 5/29/2014 - 12:22pm
Replies by: SoCalDave

Here I am re-posting a link from Lucy Young's  blog laurasrecovery.com,whose girlfriend and soulmate Laura was diagnosed and sadly passed from cervical mucosal melanoma recently.

Lucy was so kind to make a mention of my story/the second patient/ so I thank her  for having  the strenght,courage and grace to make a Tribute to Cervical Melanoma Survivors in this  hard and sad time for her.I think we both are trying to spread awareness and give hope to women out there that are affected by this dreadful deadly  disease.

Dear Lucy,Laura is up in Heaven smiling upon you,God Bless Her Soul.RIP Laura

http://laurasrecovery.com

 

 

 

 

Teodora Chasse

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sweetaugust's picture
Replies 17
Last reply 5/29/2014 - 12:28pm
Replies by: sweetaugust, Anonymous, BrianP, Bubbles, Gene_S, palmspringswalt

Hi there!

After reading several of your stories and looking at all the information out there, I realize I am one of the lucky ones to have qualified for the pd1 MK-3475 trial.  It appears too, from what I am reading, that even the dosage I am getting (the highest dosage) seems to be the dosage with the better results.

But part of the trial I am in, is that they are trying to figure out how much of the drug is needed for the best results.  Which brings me to my biggest question:  How much is too much? 

I originally was signed up for two years.  Then a year into treatment, they changed it and had me sign new forms saying "no end date."  Saying that I could be on it for the rest of my life. 

I am having a great response so far and am so thankful for that.  But I am struggling with how long I should actually stay on the drug.  And I am struggling with the fact that if I bow-out and come off of it, they will not offer it to me again.

Ideally, I'd like to do my original two-years and then come off of it and see how things go.

Has anyone out there been on it for a long time, come off it, and is still doing great?

Laurie

 

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