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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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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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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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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Tina D's picture
Replies 8
Last reply 12/4/2012 - 7:31pm

I have actually struggled quite a bit over writing this, with so many suffering so much. My hope is to bring encouragement to weary ones.

I started on Zelboraf in May, then had to be taken off for nearly 3 weeks due to severe reaction ( hideous spreading rash). I went back on at a reduced dosage ( 720 twice a day). Tumors were in more than one area of my pancreas, in the messentery infront of pancreas, one near my aorta, one in my back muscle. I had my first PET/CT on Monday the 6th and on Tuesday the Oncologist reported that scans show NO evidence of Disease. None. Everything is gone. He was so thrilled to share this news with us, and we are praising God for this wonderful answer to prayer.

The current plan is for me to continue on Z at current dosage, re-scan in abt 3 months, then possibly lower the dosage to minimize side effects if scan is still clear. I am having the full range of side effects, it seems... though after this news, I dont mind them as much!

Again, I hope others can and will find encouragement from this.

With a grateful heart

Tina

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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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Colleen66's picture
Replies 6
Last reply 12/4/2012 - 1:21pm

I am stage lll, NED after surgery .  A clinical trial was just brought to my attention by my surgical Oncologist yesterday.  There are three options available to me as I am considered high risk.  A clinical trial,. Interferon or watch and wait.

The trial has 3 arms consisting of a) standard interferon treatment.   B) high dose ipi.  C) low dose ipi.  The aim is to see if the ipi with high risk would be better than interferon at delaying recurrence and/or stopping progression.   My Oncologist even said the words "could be a cure for those at this stage"

here is the trial http://cancer.osu.edu/patientsandvisitors/cancerinfo/clinical_trials/Pag....  I am fortunate to have my doctors activily involved in these trials.  This trial is being held nation wide.  On the Page pick melanoma, next Page choose the second trial ECOG-E1609, Dr Kendra.

Any thoughts?

Colleen 

Live!

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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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Anonymous's picture
Anonymous
Replies 5
Last reply 12/3/2012 - 10:19pm
Replies by: kylez, Anonymous, sharmon, palmspringswalt

Hello,

 

I am new to this form. I am stage 4. My doctor is trying to get me into Merck PD1 trial at UCSF.

Is anyone in the Merck PD1 trial at UCSF and can tell me how you have responded to this drug and what are the side effects (if any) you have experienced. Who is the doctor running this trial and is he nice???

If you at participating in the Merck PD1 trial at a different location, I would still appreciate knowing if anyone is responding to  this Merck PD1 trial and side effects. How often are the infusions??? Do you have to do a biopsy to qualify for this trial??

Thanks you for taking the time to respond to my post.

Carol

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susanr's picture
Replies 11
Last reply 12/3/2012 - 4:37pm

Hello Everyone.  Just wanted to ask for comments/experiences from my friends on Clinical trials..any trial for Stage IV.  Trying to get my brother on a trial but I am afraid his weak state will be a factor that they will exclude him.  Have any of you or know of anyone that particicpated despite the ECOG/Perfomance status....He is able to do daily activities of daily living...shower, eat, hygiene, dressing himself....BUT...not able to walk fo long period of time.  Just going for his appts. is tuff and exhausts him.  Also, most tell me the trials are easier to handle than doing chemo.  They experienced less side effects---lethargy, fatigue..etc.  Were you at the worst stage of this" beast of a disease " and still got accepted into a trial.

Thanks for your time and comments.  You all make this nightmare that I am living easier by your help.

 

THANK YOU !!!!!!!!!!

Susan

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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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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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Owl's picture
Replies 6
Last reply 12/3/2012 - 1:58pm
Replies by: Owl, Gene_S, POW, jag

Dear all,

usually I am a passive reader of this forum. I have learned a lot about melanoma from you and very thankful. It seems that this page is the only place where you can really educate yourself about melanoma. We live in Germany and I have not yet found such professional and helpful webpage in German.

Until now things seem to work out quite well for my husband. He started IPI in May 2012. During the first weeks the disease seemed to progress (from what was visible, around 15 subcutaneous tumors). Then the subcutaneous tumors shrank and dissappeared, one after the other. At those places with hair, he lost the hair, and it grew white hair. Week 12 scans showed stable desease (though we had seen tumors shrinking, but we blame this on the 3 weeks gap between scans and starting IPI). Week 16 scans showed decreasing tumors, only a couple of subcutaneous tumors in the neck were constant in size. Now we received results of week 24 scans. Lung tumors have almost disappeared (biggest one was 10mm, lymp node in abdomen, which was 14mm is now only defined as suspicious. Tumor in testicle has disappeared. Further no new tumors, brain is free. Only the tumors in the neck area make us continue to worry. They have increased. We had seen them growing during the last couple of weeks and worried that there might be growth or new ones somewhere else. Therefore the scan result is not too bad. What makes us worry is the further procedure the docs are proposing. They would like to start Zelboraf (B-RAF positive). This sounds to us such as IPI has not worked. But we have seen it working and we believe that a reinduction would work as well. Fact is that my husband is currently in a trial (IPI comparison 3mg vs. 10mg) and a reinduction is only possible with 20% growth (this seems not to be the case).

We know that Zelboraf can be a good option but we also learned that it is probably not as durable as IPI. We have always thaught of Zelboraf that this is a solution when the tumor burden is big and any other therapies have failed.

The second option they mentioned is an op of the subcutaneous tumors in the neck. It would be in an area where they have already done the lymph node dissection and it is in the area of the aorta. It sounds tricky.

Until now we have only talked to the docs at the phone and they left us with the feeling that they are also not sure what to do. They did not mentioned radiation or IPI reinduction until we asked. We still don't have an answer whether radiation is an option. As we are currently moving house we will also change treatment center. This doesn't make things easier as docs in the old clinic tell us that decisions will be made by the new treatment center. Well, now is weekend and I won't have a chance to speak to them before Monday.

It feels very confusing. Thankfully we have educated ourselfs to ask the right questions but off course the docs are supposed to be the experts.

Has anyone out there similar experiences with partial response from IPI and only subcutaneous tumors left? We still have the hope that the response for these tumors might only be delayed. On the other side, see them growing (they have doubled in size during the last 4 weeks) , doesn't feel right.

I heard that in some countries (probably not Germany) and tumor injections with IL-2 had a very good response. Has anyone experiences with this?

Thank you for being out there,

Jenny

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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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tjndnd's picture
Replies 18
Last reply 12/2/2012 - 6:03pm
Replies by: natasha, amandamini, Anonymous, Janner, POW, tjndnd

Hi,

I'm new here - my wife is 38 weeks pregnant with our first child, and about 2 weeks ago was diagnosed with a melanoma lesion on her upper arm.  The details of the pathology report are as follows:

Breslow depth - 1.1mm

Clarks level 4

Non-ulcerated

Mitotic rate - none identified

Spitzoid type, unaffected margins

She recently had a wide local exicision performed, and the results came back as all margins clear.  She is scheduled to have a SNB done in about two weeks after the baby is born.  Apparantely, the docs do not want to do it before due to the radioactive dye used.  The other thing that confuses me is how the clarks level correlates to the breslow depth.  Isn't the breslow depth, and level of invasion basically the same thing?  I guess I'm confused because in the grand scheme of things, the depth doesn't seem extremely deep, but the clarks level would indicate that it is.....

Also - is mitotic rate of "none identified" mean that it is zero, or that they didn't check for that?

Can anyone tell me how worried we should realistically be about this?  The doctor said "not to worry" and that she is at low risk for it having spread to her lymph nodes.  He also added that some doctors might not ever do the SNB for her situation, but that most would simply as a "standard of care".  I'm reading a lot of conflicting info - and it seems like every story I read concerning a breslow depth of over 1mm - has spread to the nodes.  She has no swollen nodes or anything, but not sure if this matters or not.....thanks! 

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