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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Jerry from Cape Cod's picture
Replies 4
Last reply 12/30/2011 - 2:29pm
Replies by: Anonymous, Lauri England, BonnieLea, MariaH

As New Year's draws near I would like you all to take a minute and remember all of those fellow warriors who have fought the fight and now are our melanoma Angels!  I am really getting choked up.  I am not going to try to even come close to list those that i'll mis on the chance that I skip somebody who deserves attention.  So New Year's Eve.  Please do me a favor and raise a toast in silence to of those who have passed.  Then give one hella fa cheer to all of us who are here still facing the beast.

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Charlie S's picture
Replies 5
Last reply 12/30/2011 - 11:43pm

After being in the hospital and bedridden for almost 12 weeks, Jerry was able to stand on his own Tuesday and is now making good progress on a stationary bike.

He is still being weaned from steroids and it will be Jan 21 when he meets with his melanoma team.

For those so inclined, below is his hospital mailing address.

Send him some cards...........he needs the exercise to open envelopes !

Jerry Sullivan

c/o RHCI

Room 258

311 Service Road

East Sandwich, MA 02537

 

Cheers,

Charlie S

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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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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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NYKaren's picture
Replies 5
Last reply 1/1/2012 - 12:33pm
Replies by: NYKaren, JerryfromFauq, Anonymous, hope4cure1

Hi everyone.

I literally just walked back into my office after having two punch biopsy stitches removed at derm's office.  The nurse removed the stiches (the doc is out) so I asked her for the biopsy results--both showed "melanoma in dermis."  There was no other description, they were just small spots....satellites that keep popping up all on the side of my face near where the original larger site is.

Tonight I have PET and MRI of the brain scans, so I know we'll know a lot more after that.  But I was just so discouraged.  I just finished my second course of IL-2.  There was some talk of doing a 3rd round to "hold me off" until I can get into an anti-PD1 trial.  The docs had thought I'd be able to get into the Curetech one that just started, but Curetech didn't include Stage III unresectible.  Damn. 

So my question is this--if I have a significant spread of cutatenous satellites after completing the second course of IL-2, WHY would I want to subject myself to a third?  After my first course, some small spots on my lymph nodes cleared up, but that may have very well been a late response to Ipi.  Does this make sense to anyone?

I know I'll know more when I see Dr. Wolchok after tonight's scans, but I'm just so down.  I think that deep down inside I thought they'd come back benign...even though Dr. Halpern actually said that he thought they were melanoma because they were raised.  Lesions that are flattened after these treatments can just be leftover pigment, but raised is bad.

Anyway, thanks for letting me vent; all advice welcome, unless you're going to tell me to stop whining, cuz I already know that I need to. (I felt like I was hit in the stomach after reading about TracyLee last night--I think we all did.)  At least I'm still here fighting the good fight.

to borrow from Charlie,

Cheers,

karen

Don't Stop Believing

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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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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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