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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JerryfromFauq's picture
Replies 8
Last reply 12/30/2011 - 8:30am

Had a great trip to Colorado. Aug into Dec. Was there for the birth of our 15th grandchild and the birth of our first great grandchild! Met three very nice ladies I had been in contact with through the MPIP.org cancer site. Jeannae, who is helping her friend Rosebuddy in her battle with uveal/liver melanoma and Cynthia who though NED at stage III for over ten years, returns to give hope to new people that, indeed, there is life, joy and hope after reaching stage III. Had a great Visit with a nice lady (Eileen) that was in my high school graduating class (First face to face contact since 1962!.  Hope to be on more again now.

I'm me, not a statistic. Praying to not be one for years yet.

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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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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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trishahimm's picture
Replies 3
Last reply 12/29/2011 - 7:26pm

Hi All,

I haven't posted for a couple months since I shared that my dad's scans showed dozens of mets and we were meeting to discuss treatment options. Unfortunately, my father in law died suddenly a few days before Thanksgiving and things have been so hectic since, when it rains it pours right?

The Onc told my dad they were going to do IPI + Dacarbazine (sp). The Onc and the hospital had never used the treatment before, and when we had his appt to discuss treatment options, he had a cut out magazine article and held it out and said this is what we are going to do, exactly what they did in the clinical study described in the article. When I asked questions, he would flip through the article to try to answer my questions - clearly no clue about any of this other than the few bits he had read just before the appt. I felt like I had more information from all of you than he did, not confidence inspiring. They decided to wait another 10 days to actually start the treatment due to a possible infection in my dad's foot from the radiation, and then when they ordered the IPI it didn't come in on the shipment and they had to postpone out another several days, so it was 2 weeks before they started treating his melanoma after scan results came in. At long length, they started and he tolerated it quite well, some nausea, fatigue and abdominal discomfort, but that was it and all blood tests were perfect. Plus all of the tumors on the outside in his groin, armpit and head (which had all multiplied in the 2 weeks that we waited to start IPI) all started shrinking and many diappeared altogether by the time he went for the 2nd treatment. We were all thrilled. He had his second treatment and he said he felt the same as before, but I suspected that the last 10 days or so before he was to have his 3rd infusion, he wasn't feeling as well as before. He had some weight loss by this time as well. So the day before the 3rd infusion, he did the battery of blood tests and his ALT and APT levels were out of range this time. The Dr said he is not supposed to continue with treatment as the levels were 4 times above the threshold to continue, but that for sure without a third treatment he would likely succumb quickly to the cancer, within weeks not months. He said he wanted to do the treatment and then hope that his liver can handle it and heal, since my dad was only 59, very strong before all of this happened and was in perfect health other than the melanoma. My dad agreed to take the risk and had his 3rd infusion last Thursday, and now we are in a wait and see pattern with his liver. The Onc did not prescribe him anything else.

So that is where we are at. Does anyone know why he might not be prescribed anything for the liver levels? I saw in lots of case studies that I researched on the internet that most everyone was given Prednisone or other things to try to counteract/control the liver levels. Also, for anyone who might have had a simliar experience with IPI, what did you do to help with liver healing? The Onc told him absolutely no supplements, drink water and no meat. That was it. Seems pretty primitive to me, and I was hoping there are other suggestions or success stories I might be able to share with my dad. My stubborn dad is getting a bit more openminded about health and diet type information right now, and I would love to hear what has worked for others. I have searched the forum, but it is so hard to scan through so much info. I sure wish he was able to come on here himself for support and guidance.

Thanks for any information you might want to share and HappyNew Year to everyone,

Trisha

 

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deardad's picture
Replies 3
Last reply 12/29/2011 - 5:17pm

Hi excuse me if this question sounds naive, but I'm just wondering whether surgery is an option even though you have tumors in spleen, liver, one lung, in skin near kidney? I know that surgery is a palliative option but is it worth going in and being aggressive with surgery to increase overall survival? At the  moment Zelboraf is shrinking tumors but I know it's going to stop one day and I just can't help thinking ...go in and remove what you can...can't this help?

Thanks in advance

Nahmi from Melbourne

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MikeWI's picture
Replies 4
Last reply 12/28/2011 - 9:32pm

I have been reading about this Trial and have some question.  It seems this would offer lots of promise to us with melanoma.

My questions are:

1.  what is the delivery method of Anit-pd1?  Is it done IV, or is this a pill, or a cream.

2.  How does it know the difference between Healthly skin and the Tumor?

 

MikeWI

stage 2c

Search and Destroy

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dorothymoe_1's picture
Replies 2
Last reply 12/28/2011 - 4:24pm
Replies by: Tim--MRF, NYKaren

Hello, I am Dorothy.  I am new to this site but really just wanted to check it out.  My father has stage 4 malignant melanoma that has spread to his lungs, brain, stomach and spleen.  He has tried several bouts of chemo and 1 of radiation.  He had an MRI 2 days ago and they have gotten bigger in his brain and lung.  I am not sure if there is anything more to do.  I am so upset and he is scared as well as my mom.

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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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Roxy1453's picture
Replies 3
Last reply 12/28/2011 - 2:37pm

I've been reading a lot of the posts about people taking Ipi. It is so encouraging to read how many people are doing so well during and after treatment. There doesn't seem to be any way of knowing how you will react.
I had my first treatment Dec. 6 ( my husbands birthday!) and will have my second on Dec.29(my daughters 25 birthday).
I have been dealing with Mel since 2006. It started on my nose. Three years later it came back in the same spot. I did a year of Leukin after 6 weeks of radiation. This year, Aug 22 I had surgery on my right lung to remove 3 spots, only 2 were Mel. Oct 14, I had surgery on my left lung to remove one spot. I thought everything was gone until my last PET scan showed a new spot behind my knee. I had not ever thought that I wouldn't beat this until that moment. It all became very real and it took me me a week to get my positive thinking back. This is all so very hard!

I prayer for everyone on this forum to have a happy holiday and may they find a cure for all of us soon!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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FormerCaregiver's picture
Replies 1
Last reply 12/28/2011 - 1:41pm
Replies by: hope4cure1

Wishing everyone a very happy Christmas filled with peace and joy.

I think that this season gives us a real glimmer of hope that things will get better, despite the difficulties and struggles of everyday life.

Take care

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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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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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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himynameiskevin's picture
Replies 7
Last reply 12/27/2011 - 11:25pm

Hey everyone, well I did my fourth and final dose of ipilimumab yesterday. All went well. Unfortunately this whole time while on the drug, I didn't seem to experience a single side effect, I say unfortunately because from what I understand, side effects are a good sign it may work. And I had nothing, so a part of me is a bit disappointed and worried. But who knows, I guess anything thing is possible. I should be thankful that overall I still feel pretty good. I've had a lingering itchy throat cough which signs point to a post nasal drip issue. But other than that I'm doing good. Still working and living close to as normal as I ever have. I'm going to enjoy the holiday and welcome the new year, do my best to make it through the "waiting period" until I have my scans in a couple weeks. I'll let you all know how it goes.  (fingers crossed).

I hope you're all having an enjoyable holiday season.

Talk to you soon.
-Kevin
 

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laurieformike's picture
Replies 3
Last reply 12/27/2011 - 7:44pm
Replies by: laurieformike, alicia

My husband started WBR today, while on the Zelboraf, they the Oncology Radiologist and the Oncology doctor both thought it would be okay! So now after reading on here, that it my not be a good idea. Going to call the Zelboraf Patient Support service tomorrow. We kept asking  to be sure they were fine with him staying on it. Oncologist said that not everything has been tested, but felt it was okay to be on it while doing WBR. Now scared for him, he's been through so much with the side affects, the throat swelling, seizer from Cyberknife(swelling),very fatigued all the time. Knowing that that will get worse with WBR.

I will be checking back in to up date anything new, the next two weeks will be very busy going to Stanford daily.

Hope you all have a nice Holiday season!

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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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