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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lhaley's picture
Replies 22
Last reply 12/14/2012 - 10:25am

Last brain mri had shown everything was either stable or shrinking. Ct was clear.   Yesterday the mri showed that the 2 that had been stabled (radiated in June and then bleeding) is still shrinking however there are now about 20 brain lesions.   Options are now limited.

I had always said I won't do WBR but I have to try. They fit me for the mask today and will start on Friday.  Once this is finished I will be trying Yervoy. 

Linda

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Tina D's picture
Replies 23
Last reply 5/6/2014 - 2:12pm

Scan results today show Mel is back in my abdomen. One area 2 1/2  X 3 1/2 cm and two smaller nodes adjacent. SO disappointing : (  . SO hard to have to hear that and then for us to relay this to the kids. Our Oncologist will be calling IU MEd and also Siteman Cancer Center ( Dr Linette) to discuss treatment options. We have been in the process of getting an appt with Dr Linette, so he may already have some of my records. Ideas discussed today were : surgery, Ipi, and another Zelboraf type drug that is supposed to be more effective, but is awaiting approval ( havent heard of this and unsure what it is). My uveitis has only slightly improved, and I am thinking  they would not start any new treatment with this issue. Since I will likely have to wait for my eye to heal, if they dont need the tumor left in, I may prefer surgery first, then beginning of the yr when I am healed up enough, start ipi ( just thinking out loud) Should hear back from my Oncologist by Friday and we will try to make the best decision based on what they tell us. Praying for wisdom! *sigh*  Feeling a little battle-weary, but remaining SO thankful for my life and all He has blessed me with.

On a good note, the eye Dr does not think my vision will be permanently damaged & I am very thankful for that news! My pupil is actually shaped like a sideways heart at the moment... looks rather unusual, haha!

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/6/2012 - 4:19am
Replies by: Snickers60, melmar, Gene_S

Hi,

I  just found this forum & a newbiew. I am still learning how to post & learn how to do my profie.

I have been on this Merck  PD1 drug since  Jan. 2012 just like Margo,who posted  that this drug stopped working for her. Needless to say, I am concerned  that this drug only works for a limited time and then stops working.

It would be helpful if other  people taking Merck PD1 would post their experience/response with MERCK PD1 drug.

Thanks for posting your reply.

Dianna

 

 

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melmar's picture
Replies 3
Last reply 12/5/2012 - 10:59am
Replies by: melmar, jim Breitfeller

I have not posted in a while as it has been a tumultuous couple of months.  In September, I learned I was no longer responding to anti-pd1 with growth in spots in lung and back and a new one in adrenal gland.  Started ipi two weeks later.  Have had terrible side effects -- fatique, itching, gastro, muscle aches and today learned that ALT and AST levels are greater than 5x upper limit.  So i have started 80mg of prednisone and am not allowed 4th infusion.  Feeling amazingly better after two doses of prednisone but worried about not receiving final dose of ipi.  Anyone out there achieving complete or partial response even without receiving all four doses?  Keeping the faith, but would love to read some success stories.  

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Colleen66's picture
Replies 6
Last reply 12/6/2012 - 2:02pm

Was at the Medical Oncologist today and talked for 2 hours about treatment.  I decided on the clinical trial.  already screened at same visit.  3 Arms, Interferon vs high dose ipi vs low dose ipi.  Had all the blood drawn and ekg today.  Scans scheduled for the twelfth and 1st infusion on the 27. My head is spinning at the speed all this is going.  I want to thank everyone on this board for you knowledge and caring manner.  I know so much more about melanoma and treatments that my head just might blow up :) 

Keep up the good fight.

Colleen 

Live!

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audgator's picture
Replies 11
Last reply 12/9/2012 - 3:31pm

Had my 3-month scans at Moffitt yesterday and follow-up PD-1 treatment today. The scans showed continued shrinkage. Of 4 mets still in the liver, the largest is 5x5 mm. Previous lung mets are undetectable.  Yea!!!    Dan

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Randy437's picture
Replies 16
Last reply 12/9/2012 - 3:37pm

My scans yesterday were negative - NED for 3 years now after having mets surgically removed from brain, each lung and small inestine.  I also learned that there is a newer genetic test for the BRAF mutation..  Some people (I don't believe it's many) who previously tested negative are testing positive with the new test.

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Tina D's picture
Replies 5
Last reply 12/5/2012 - 7:12pm

Developed a very red and extremely painful eye over the weekend.Very irritated and light sensitive. Saw eye Dr this am & dx is uveitis and synechia ( which is the iris "sticking" to the lens). Off Z for now until further instructions from Oncologist. Being treated with prednisolone drops every hour, and atropine drops 4Xday. My routine PET is tomorrow. This is the 2nd PET since starting Z in May of this yr. Thankful the uveitis seems to have been caught in time to not cause any permanent effects, but I am not sure if this will cause me to be unable to continue on the Zelboraf. I will post when I have scan results, and answers for the next step...

Tina D

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nsabel's picture
Replies 8
Last reply 12/4/2012 - 8:53pm
Replies by: nsabel, audgator, vivian, jim Breitfeller, Tim--MRF, Anonymous

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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nsabel's picture
Replies 6
Last reply 12/4/2012 - 2:25pm
Replies by: Swanee, nsabel, Anonymous, kylez

Hi-- thanks for taking time to look at this question. 

My 70 year old father received a kidney transplant in early 2008 and melanoma was found on his neck and several lymph nodes around his jaw/neck in mid-2009. All impacted areas were surgically removed (at tampa general) and he has been doing well until the most recent pet scan (5 lymph node areas in neck).  We're trying to find someone who understands his situation (metastatic melanoma in a immunosuppressed patient) and can spearhead a treatment plan. He doesnt really have a DR right now who is guiding his through things. Does anyone have experience with this situation? Any DRs you could recommend contacting? He can go anywhere for treatment but lives near tampa  and also in ohio. 

thanks so much,

Naomi

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Hello, Just wondering if anyone is on IV nutrition infusions to assist in their weight gain, fatigue, etc.  If so...any suggestions in the NY metro area or even out of state.

 

Thanks !!!!!!!!

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samcanada's picture
Replies 3
Last reply 12/4/2012 - 7:26am
Replies by: Linny, samcanada, washoegal

I have read many post concerning scar tissue, but was wondering if anyone has any where the drain was? My husband had a drain for approximately 2 weeks after having nodes in his groin removed last November. What I think might be scar tissue starts just below the spot where the drain entered his leg and extends downward toward his inner thigh. He had been staged at 3A and needless to say I am extremely terrified of a recurrence. Thankyou 

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alabama girl's picture
Replies 8
Last reply 12/3/2012 - 11:49pm
Replies by: sjl, Anonymous, doriniel, DeniseK, POW, alabama girl

My melanoma surgery was a year ago and just recently I have had pain and a hard lump come in the middle of the wle scar. Can this just be scar tissue and does scar tissue hurt after a year? It is white. Not sure whether to be alarmed or not. It does get rubbed alot since it is on the area where the bottom of my bra sits on it. I am stage 3B.

Thanks for any info!

Alabama Girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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natasha's picture
Replies 5
Last reply 12/3/2012 - 3:19pm
Replies by: Liz C, Anonymous, natasha, melissa ann

Dear friends!

       Please ,give me your opinions on the following :

 

        my doc decided to cut off another suspecious mole from my arm 2 weeks ago ,finally it came up as intradermal nevus.

       What is what????? I am worried.

       I know nevus is all good ,but interdermal?? Does it mean invasive and can it be missdiagnosed and melanoma in fact??

      It is 1 year since my initial diagnosys with mnelanoma and it is first mole had been removed since that.

      Nevus meens nothing to worry about ,but intradermal meens it is deeper then epidermis.

      My Doc just said go home and don't worry .he is not very helpful

     Please , share your expierence and knowledge on this subject

     Thank you all for your help and understanding

  

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