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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Hi everyone: We're holding a volunteer training workshop in Los Angeles, and we'd love to have you join us! We'll cover topics from fundraising strategies, advocacy, and working with the media. If you are in southern California, this is a great opportunity to meet other people in your community who are committed to making a difference.

So, if you've always wanted to volunteer, and would like an opportunity to find out how you can get involved, please join us.

For more information:http://www.melanoma.org/get-involved/mrf-volunteer-training

Thanks!

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Maxximom's picture
Replies 11
Last reply 3/28/2012 - 2:18pm

I was admitted to OSU James Cancer Center Friday night to start IV Steroids for severe Diarrhea. I started to have diarrhea about 5 days before I was due to have my second Ippi infusion. I did have the second infusion last Thursday and then the next day, the diarrhea really accelerated and I was started on 20mg prednisone..it didn't help very much and they upped the dose to 20mg in the am and 10mg at night and still it was bad.I had to stay home all this time as I needed to be near the bathroom. I was hoping that Dr Kendra would get me onto Endocort.. but that didn't happen. Friday I got the call to be directly admitted to the hospital to start the IV steroids.Things slowed down..but I still have diarrhea even with the IV steroids.Yesterday they let me go home after things got down to 7 movements a day..and started me on 1200mg of Prednisone.I am due to have Ippi #3 next Thursday..but of course that isn't going to happen with such a high dose of Pred.I believe that you need to be on 7mg or less to get the Ippi..I will take a long time to get weaned off such a high dose and I fear that I will have to discontinue the Ippi. I am BRAF negative and that doesn't leave many options open to me.I would hope to get into a anti PD1 trial..but there is  nothing near by to me.I really want to continue the Ippi..if they will let me..I can deal with the diarrhea  as unpleasant as it is.I know that many of you have gone through this..any advise or encouragment to very welcome..I am starting to think that contsipation is a beautiful word..LOL

Joan

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My husbands scans on Feb. 24th have shown 2 lytic lesions on T8, T9 & T10 and 1 lytic lesion on his right pelvis.  He underwent a needle biopsy while in the hospital for ipi induced hepatoxicity.  It confirmed they were metastatic melanoma.

He is currently on mega doses of methylprednisolone.  We are getting repeat scans on April 9th to see if we see evidence of shrinkage or growth.  At that time he will be 8 weeks post ipi induction phase.  He is currently off study due to his side effects.  His oncologist has ruled out any immunological treatments at this time due to the severity of the ipi side effects.

She is currently talking about doing a bone strengthening treatment, Zometa at his appointment on the 9th.  She is looking at Temodar as his next treatment.  I am concerned about Temodar since it may have a limited life and he currently has no brain involvement.

Any thoughts or suggestions?

barb

We don't know how strong we are until being strong is the only choice we have.

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LynnLuc's picture
Replies 8
Last reply 3/28/2012 - 10:38am

Happy NEDaversary to me , Happy NEDaversary to me, I'm alive and still here, Happy NEDaversary to me!! 2 years since the thoracotomy and 74 weeks of the Anti- PD-1/peptide trial and I am still without evidence of disease...and to think my B day is coming up! I love getting old!!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/28/2012 - 2:07am

Im just preparing myself for next weeks scans for my dad, I think it's now 3 mnths without scans on Zelboraf which he started OCT 2011. If there is new growth what do you think we should try next?

I know it really depends on where you live (for trials) and we are in Melbourne Australia. I'm wondering if anyone has been on Zelboraf and had surgery at the same time? The late Jim Stynes RIP had 24 surgeries including 6 in his brain, he was only 45 and AFL footballer, do you think his treatment was more aggressive because he's young and fit or due to his high profile. My father shares the same oncologist and I suppose Im just really stressing out for him. Has anyone had SRS on their liver?

I just want them to go in and remove the tumors that can be removed and SRS the liver where there are four small lesions.

What are your thoughts.

Thanks advance 

Nahmi (daughter of patient)

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zzzzil's picture
Replies 8
Last reply 3/28/2012 - 1:39am

Hi, I'm in the UK and my girlfriend is Czech... (she has Stage 3A melanoma -- so far!) ...wondering if there are any other UK or Czech users here.. or a recommended community - Thanks so much

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Lea H's picture
Replies 8
Last reply 3/28/2012 - 1:13am

Hi Everbody.

I joined this forum in the hopes of finding out what new treatments and trials were out there.  My husband, Erik was diagnosed with Stage 2 melanoma in 1998 and after a wider excision, he was given BCG injections for 3 years.  We thought we had kissed this disease goodbye but then in 2004 it reared it's ugly head again.  Erik found a swollen lymph node under his left arm and our worst fears were confirmed.  What followed was 6 months of low dose interferon followed by 6 months of decarbazine and then a further 6 months of Interferon.  He then had radiation under his arm.  We held our breath and waited and years went by and we slowly put the dreaded MM to the back of our minds.  For another 6 years Erik was NED. Then in May 2011 we decided to move our family from South Africa to Norway to give our young sons a better life. All was going well and then on the 8th of November 2011we received the devastating news that not only had the melanoma returned but that he had multiple tumours.  Erik was a courageous viking warrior and he was not going to give up without a fight.  He had too much to live for!  After 6 long agonizing weeks while we waited for BRAF results from Germany, he finally got the go ahead to start the Zelboraf trial.  On the 18 of December he started the trial and the results were nothing short of miraculous!  Within a week all the soft tissue tumours had disappeared.  Before starting treatment, Erik was unable to walk as he had a massive tumour pushing on the side of his spinal cord.  Within 2 days he was walking absolutely perfectly again and he did not get out of breath when walking 10 paces.  He read Lance Armstrong's book and was inspired to do the same.  Each day he would have a little ritual when he took his bombs (as he called them) He would talk to each one and imagine it attacking a specific tumour.   We had a wonderful Christmas and things were going well. Then at the end of January Erik had a seizure.  A MRI revealed 9 spots on the brain but as they had not scanned the brain previously, we were not sure if they had been there all along.  Erik had his first protocol CT on the 8 of February and his oncologist was thrilled with the results.  All the tumours had shrunk, some more significantly than others.  Two weeks later he was in a lot of pain again.  He had significant pain in his right thigh and groin area.  After not being able to control the pain effectively with Oxycontin and Oxynorm, we went back to the oncology ward at the hospital where they admitted him.  Further CT's and MRI's revealed that in 2 short weeks the Zelboraf had stopped working and the tumours were all back to their original size and bigger.  On top of this, Erik developed an infection that they were battling to fight.  He managed 1 day of decarbazine but his infection levels were to high to continue. Erik never gave up and when given the bad news he would just say, "okay, what next"  Sadly this courageous husband and father passed away on the 6th of March after a battle bravely fought.  It was just 2 days before his 44th birthday. I have been so inspired by reading all your stories and I would often relay them to Erik.  This is the first time that I have posted on this forum but I felt I owed it to my brave husband to share his story.  I wish all of you many years of NED!

 

Leanne

When life serves you lemons, make lemonade.

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bruski1959's picture
Replies 6
Last reply 3/27/2012 - 5:52pm

The third Yervoy dose came in Tuesday, but Jackie had another dehydration bout Monday evening requiring another 6 hour visit to the ER. IV fluids, IV steroids, IV anti-emetic, and oral anti-emetic. Also X-rays and a CT scan. We were back home in bed by midnight. Oh yeah but I hadn't slept much as I had gone along for moral support to pick up our pastor and his wife from the airport and got home about 4 AM Monday morning. Jackie was sent home on clear liquids and 60 mg a day of steroids. She found a way to sleep without medications causing confusion and inability to concentrate. Yesterday she progressed to bland food. The third Yervoy infusion has been rescheduled for Monday March 26th. Friday is Jackie's Heinz 57 birthday. The 4 doses of Yervoy have be given in a 12-16 weeks. Jackie still has had pretty severe fatigue, but seems to be gaining strength daily. We appreciate your thoughts and prayers as we continue to press forward on this battle with melanoma.

Thanks,
Bruce and Jackie

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jim Breitfeller's picture
Replies 3
Last reply 3/27/2012 - 3:51am

Boots,

HLA_A2 exclusion/inclusion  is 

The human leukocyte antigen (HLA) test, also known as HLA typing or tissue typing, identifies antigens on the white blood cells (WBCs) T-cells  that determine tissue compatibility.The  peptide-based vaccines are produced with HLA-02 petides/ antigens. So to be able to benefit from this type of therapy, your T-cells must have HLA-02 type.  are produced from

 

Jimmy B

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bikerwife's picture
Replies 1
Last reply 3/26/2012 - 9:07pm
Replies by: aldakota22

lYNN had his fourth treatment today not sure what it meant  but Dr. said something in blood was dropping and his exact words were good, good, good.  He may have to have radiation under arm on growth just not sure yet. We have scans in 2 weeks and then again in 2 to 3 months. He said it may show growth in 2 weeks but not to worry (yea right) cause that happens at times.  So i guess we wait again ready to be NED.  My husband has 26 years and 7 months needs 1 year and 5 months to retire.

What God leads u to he will. Lead you through

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Lea H's picture
Replies 1
Last reply 3/26/2012 - 8:46pm
Replies by: gabsound

Hi Everbody.

I joined this forum in the hopes of finding out what new treatments and trials were out there.  My husband, Erik was diagnosed with Stage 2 melanoma in 1998 and after a wider excision, he was given BCG injections for 3 years.  We thought we had kissed this disease goodbye but then in 2004 it reared it's ugly head again.  Erik found a swollen lymph node under his left arm and our worst fears were confirmed.  What followed was 6 months of low dose interferon followed by 6 months of decarbazine and then a further 6 months of Interferon.  He then had radiation under his arm.  We held our breath and waited and years went by and we slowly put the dreaded MM to the back of our minds.  For another 6 years Erik was NED. Then in May 2011 we decided to move our family from South Africa to Norway to give our young sons a better life. All was going well and then on the 8th of November 2011we received the devastating news that not only had the melanoma returned but that he had multiple tumours.  Erik was a courageous viking warrior and he was not going to give up without a fight.  He had too much to live for!  After 6 long agonizing weeks while we waited for BRAF results from Germany, he finally got the go ahead to start the Zelboraf trial.  On the 18 of December he started the trial and the results were nothing short of miraculous!  Within a week all the soft tissue tumours had disappeared.  Before starting treatment, Erik was unable to walk as he had a massive tumour pushing on the side of his spinal cord.  Within 2 days he was walking absolutely perfectly again and he did not get out of breath when walking 10 paces.  He read Lance Armstrong's book and was inspired to do the same.  Each day he would have a little ritual when he took his bombs (as he called them) He would talk to each one and imagine it attacking a specific tumour.   We had a wonderful Christmas and things were going well. Then at the end of January Erik had a seizure.  A MRI revealed 9 spots on the brain but as they had not scanned the brain previously, we were not sure if they had been there all along.  Erik had his first protocol CT on the 8 of February and his oncologist was thrilled with the results.  All the tumours had shrunk, some more significantly than others.  Two weeks later he was in a lot of pain again.  He had significant pain in his right thigh and groin area.  After not being able to control the pain effectively with Oxycontin and Oxynorm, we went back to the oncology ward at the hospital where they admitted him.  Further CT's and MRI's revealed that in 2 short weeks the Zelboraf had stopped working and the tumours were all back to their original size and bigger.  On top of this, Erik developed an infection that they were battling to fight.  He managed 1 day of decarbazine but his infection levels were to high to continue. Erik never gave up and when given the bad news he would just say, "okay, what next"  Sadly this courageous husband and father passed away on the 6th of March after a battle bravely fought.  It was just 2 days before his 44th birthday. I have been so inspired by reading all your stories and I would often relay them to Erik.  This is the first time that I have posted on this forum but I felt I owed it to my brave husband to share his story.  I wish all of you many years of NED!

 

Leanne

When life serves you lemons, make lemonade.

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MeNDave's picture
Replies 13
Last reply 3/26/2012 - 6:45pm
Replies by: Kimberly Duncan Watts, LynnLuc, MeNDave, Anonymous, cltml

Dave goes tomorrow for his scan results.  He has been doing the low dose Temodar since November.  We are obviously hoping that it continues to keep him stable, but his onc did say if there wasn't signifcant reduction in tumors, he wanted to switch him to the MDX-1105 (I believe it is now listed as BMS936559)  trial at Roswell.  I haven't heard much feedback on this particular trial, and after Candi's post on Mercks drug, I'm wondering if there is a clear leader in the anti-pd1 race.  Any feedback, as always, is greatly appreciated.

Best to all of you,

Maria

Don't ever, EVER, give up!

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Great article just published on another approach to melanoma.  Check it out here.

http://www.newswise.com/articles/studies-pox-vaccines-extend-survival-for-patients-with-melanoma-ovarian-cancer

 

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Lilylove414's picture
Replies 2
Last reply 3/26/2012 - 9:39am
Replies by: Lauri England, UrsulaZ

So I finished my first month of treatment about 2 weeks ago. I am so glad it's over! It was a ROUGH month! The first week was all throwing up, then I got a week off to recover. Then I was on half the original dose for a week, then 85% of the dose. The last week was the full dose but instead of throwing up I experienced the symptoms I was supposed to...ish...which was a high 101-102 fever each night. Now I'm waiting for my treatment to be shipped in vials to the doctors so they can show me how to give myself injections 3 days a week. But it's back to half the dose...which is awesome! God has been so good to me and I have a lot to be thankful for. Oh, and I lost 10 pounds that month! But now that I'm "on vacation" I'm quickly gaining it back. Gotta start eating right and exercising...bummer. ;) Well lovelies, keep fighting, keep protecting your skin and keep laughing!

God bless,
Jaimy

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

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Kim41's picture
Replies 4
Last reply 3/26/2012 - 3:13am
Replies by: Kim41, gabsound, washoegal

Abnormal PET scan Feb 2/1/12. Post surgical changes seen in left groin. Questionable more slight density in left groin when current exam compared to last PET/CT. Some new areas of hypermetabolic activity seen in involving portions of the neck on the right side  and at the level of the right paratracheal region and right hilum and axilla are nonspecific. The spleen appears more hypermetabolic when compared to the last PET/CT scan. The possibility for progression of disease is considered.    My melanoma specialist said he is unimpressed by results of this PET scan. What do you fellow people think. It is March 23and I have been feeling very tired and weak in the last several weeks with pain in my right flank and in both right and left lung bases. Not sure if I should be concerned or not. I have my next scan May  23rd. Should I go to the doctor before that?. Also having pain on and off above both clavicles right and left. Mostly concerned about pain in lateral rib and back area. Has anyone else had this pain. Maybe its nothing to worry about. feeling so tired lately though. I would welcome some feedback. Thanks

         Kim

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