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
Replies 4
Last reply 12/28/2011 - 3:10pm
Replies by: Anonymous, fgilbert63, NYKaren, Lisa13

a good friend of mine just had his 3rd treatment of ipi 2.5 wks ago, after a recent ct scan it showed 2 spots on his lungs. the local onc wants to stop the ipi and start him on dacarbazine. can anyone tell me why?

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Sherb's picture
Replies 1
Last reply 12/28/2011 - 8:17am
Replies by: FormerCaregiver

We just received the results of my mom's BRAF testing, it was negative. She has tumors in liver and mesentary and groin. What treatment if any have any of you tried, other than Ipi/Yervoy. She was not a responder. She is weak, not eating well, and extremely tired. Any help or suggestions would be great. Thanks.

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Sherb's picture
Replies 0

We just received the results of my mom's BRAF testing, it was negative. She has tumors in liver and mesentary and groin. What treatment if any have any of you tried, other than Ipi/Yervoy. She was not a responder. She is weak, not eating well, and extremely tired. Any help or suggestions would be great. Thanks.

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LilithFaith's picture
Replies 29
Last reply 7/24/2012 - 7:47am

My mother, Tracy Lee, stage 4 melanoma lost to a long hard fought battle of her cancer today at 12:12. Without everybody's prayers the medication she was on, BRAF starting in August, she would not have made it to Christmas. I am her daughter and she is also survived by her husband Neil and my siblings Bailey, 21, chandler, 19, myself, 16, Kalla, 14, and her granddaughter Stella. Thanks to the people across the country praying for her and active people on this board who gave her hope through her battle. She is in a much more peacful place.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

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lyndaloo's picture
Replies 12
Last reply 12/29/2011 - 8:55pm

My husband has his third round of Ipi on Friday. He has been experiencing trouble focusing specficially with the left eye with some eye pain, He hasn't been driving the past month as he doesn't feel his vision is good enough to drive. The last ipi treatment he told the doctor his vision was weird and the doc gave him steriod drops which seems to help somewhat.  He had a brain ct scan abou 9 weeks ago when he first started ipi which showed no new growth of mets so I am praying this is not related.  Has anyone else experienced vision problems while on ipi? The doctor thought the drug could be inflaming the eye region as it is known to do this with other organs as well. No other side effects except the occasional headache and tiredness. The drug seems to be working as several subcutaneous tumors have all shrunk to almost nothing!!

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Sonja's picture
Replies 1
Last reply 12/27/2011 - 4:39pm
Replies by: Frannie55

Has anyone here had the liver covered with mets.  What treatment did they do?  My husband has done Interferon, IL2, Taxol/Carbo, Cisplatin/dacarbazine/carmustine, and Yervoy; all these treatments failed.  He is not eligible for any clinical trials because of his kidneys failing and his HGB is always under 10 (he has sideroblastic anemia).  He is also Braf negative.  He also has multiple tumors in his lungs, abdomen, leg, and they suspect throat.  Dr is going to start him on Temadar/Thalidomide - what I have found so far on the internet it looks like this is more for brain mets; which as far as we know he doesn't have.  Haven't checked the brain in several months.  Last visit we asked the Dr. how long he thought Larry might have and he said 6 months to 1 year but don't count on the year.  He basically moves from the bed to the chair and the bathroom and that is it.  He was somewhat active until a couple months ago and now it is all he can do to force himself to move. 

Sonja 

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Lisa13's picture
Replies 7
Last reply 12/28/2011 - 10:00am

I've had a cold for 3-4 days now and I've now come up with a dry cough that hurts.  Obviously before cancer, we've all had these problems, but when you have lung mets, you want to take care of anything that may be an infection.  That being said, if I think I may be getting bronchitis, would you talk to your oncologist or walk in Dr/family Dr.  

Many impossible things have been accomplished for those who refuse to quit

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Lisa13's picture
Replies 2
Last reply 12/30/2011 - 12:54pm

After finishing Ipi in October, for the past 2 days, I've been itching like crazy! This was the one side effect I would get a few days after each infusion.  I can definately handle it, but I'm also wondering if continued side effects months later means your immune system is kicking in,    I have my 24 week scan on January 29th, so I'm hoping this itch means ipi is working it's magic.

Other than a nasty chest cold I've had for 3-4 days, I'm doing great. I have no pain anywhere and no headaches, etc from the gamma knife I had 7 weeks ago.  Let's hope things continue to be good.

I hope everyone had a wonderful holiday.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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I feel like I'm falling apart.  Started losing taste before my diagnosis - but now everything tastes bad - especially water.  Losing vision in right eye and have lots of pressure headaches above the eye.  Also, crickets and buzzing in both ears.  Anyone else?  Not sure if it's due to meds, surgery. radiation, or cancer (possible leptomeninigeal disease).  Please share you story with me.  

 

Thank, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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panda's picture
Replies 1
Last reply 12/27/2011 - 9:16am
Replies by: panda

pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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panda's picture
Replies 7
Last reply 12/27/2011 - 10:12am

pls can yu read my post on stage II melanoma i posted as anonymous and give me some advice thankyou

today is a gift and thats why its called the present

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/2/2012 - 5:37pm
Replies by: snowmaneasy, kylez, Maria Elena, scots, Anonymous

hi happy xmas. i was diagnosed jan this year with stage two melanoma, one eighteenth of millimetre and had two centimetres extra cut out around where the melanoma was from my back.. Can someone tell me what i do now. my father died from stage four melanoma last year bone cancer, and it is thankyou to him that i found this on me... when i went to get my moles checked. do i go back now every five months and get blood tests? lymph tests? what tests SHOULD i get so it doesnt come back? can someone advise me PLEASE..... it is scarey. thankyou so much. :)

today is a gift and thats why its called the present

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Ashykay's picture
Replies 1
Last reply 12/27/2011 - 4:19am
Replies by: FormerCaregiver

Hi all

Apologies for not updating sooner on my Mums Yervoy treatment - time really does get away.

Mum started Yervoy around October (plz see my profile for details up till now).

Mum has had a rough trot since then. After she started the treatment, her pain seemed to incredibly intensify. This led to a week in hospital for the first time. She was out of it a lot of the time due to the morphine & other drugs she was on. At first, the registrar in the hospital had told us that this was probably due to the tumor growing. This was incredibly devastating news. However, about an hr later, Mum had a visit from her Yervoy trial doctor. He told mum that due to the sudden onset of her pain after her treatment, he actually thought it may be the Yervoy working and making her immune system go a bit crazy around the tumor. He said he has seen this sudden & early reaction in a number of his patients previously. It was a tough week though - mum lost confidence and was scared to go home to be in the amount of pain she had been. However, before she left they gave her an epidural which significantly reduced her pain - I think she was even off morphine for a bit!

Since then, she has been getting numbness and pain in her left leg (which is not the leg which was previously affected by the tumor - it had been her right leg). She's on Targin & Lyrica now. Its hard to know what she is experiencing is being caused by the tumor or that Yervoy has her immune system working hard & attacking that evil tumor! Her symptoms include: a hard spot where the vaccine has gone through on her leg, hives & itchy rash on her body including her back, extreme fatigue (sleeping 4 days on end/even midst conversation), confusion & forgetfulness, numbness in the left leg and hands, aching wrists etc. She also has incontinence (however this was present to some extent prior to treatment due to the location of her tumor).

I've read about the Yervoy side effects and a lot of these are listed in the common category. Hopefully that immune system of hers is working hard and the scans which will come after her last treatment in March will be positive. It's really difficult sometimes seeing mum being so forgetful & incapable of doing things like she used to. She has her good days and bad days, as I'm sure everyone on this forum would understand. We are just trying to take each day as it comes.

Anyway thanks for reading this, and would love to hear your thoughts. Hope you all had a lovely Christmas & wishing you a most positive New Year.

Cheers - Ashley

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Lilylove414's picture
Replies 15
Last reply 3/21/2012 - 12:17pm

So I've had MM for about 3 months now, I was diagnosed September 12th and I have stage 3. While my family and friends have been great, none of them can really understand how I feel. Praise God this site exists! I'm 25, the youngest of 3 and I'm about to start a year of Interferon in January since I already had my surgery on my arm and 2 lymph nodes out. I'm finally over the feeling of putting my life on hold and I now know it's just taking the scenic route. I believe in Jesus Christ as my personal Lord and Savior, and I know He will bring me through this! If you believe in Jesus as your Savior then you know how important knowing God is! If you would like to know Him then hit me up! We're all in this together!1

God bless,
Jaimy

If God is for us, who can be against us?

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