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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 9
Last reply 5/21/2013 - 11:04pm

I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8x8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week. What are my options? Should I wait to get in study or start IPPI right away? Is it possible to do targeted radiation and then immunotherapy ? Can they do surgery on that many lung nodules? I already had one lung nodule removed by surgery before January . I am desperate for advice!!!

Login or register to post replies.

casagrayson's picture
Replies 3
Last reply 5/21/2013 - 5:23am
Replies by: aldakota22, POW, BrianP

I am rather new here, and don't know many people well.  I do, however, follow PeterO's blog @ theogler.blogspot.com.   Sadly, today's post shared news of Peter's passing early this morning.  

 

 

Saturday, May 18, 2013


The life that is truly life
 
We write with grateful but heavy hearts to share the news of Peter's passing this morning, May 18th, at 7:30 a.m. The loss we feel is profound, and yet we rejoice in faith that he is even now entering into the light of God's presence. He went in peace, surrounded by our prayers.
 
For those of you who are in the area and would like to come, a memorial service in honor of Peter's life will be held next Friday, May 24 at 2:30pm at Calvin Presbyterian Church in Corvallis. The reception following the service will be held at our home.
 
These past few weeks have been intense and sad, as we've cared for Peter in his steady decline. For those of you who are counting, Peter's death comes just a few days short of the 2-4 month prognosis his doctors gave us in March. If Peter were here to write this post, he'd certainly have plenty of conjectures about how and why his cancer went the way it did towards the end and what it all means medically. The truth is that we will never know - we simply rest in thanksgiving for Christ's presence with us, the Great Physician who knows the inner workings of our bodies and ordains the days of our life, and the moment of our death. Cancer did not have the final word in Peter's story. His journey has only begun now that he has passed into the "life that is truly life" (1 Tim. 6:19), where we trust he will live with God forever in his resurrected body.
 
We want to thank you all for your prayers, kind thoughts, phone calls, blog comments, messages, and words of encouragement during this time - our whole family has felt your care so deeply and truly sense our unity in Christ's love. We're especially thankful for the season of Pentecost that is now upon us, and trust that the Holy Spirit will come to our hearts to illuminate and console, as Jesus promised. We do not mourn as those who have no hope.
 
 

Strength and Courage,

Susan

Login or register to post replies.

 

Strength and Courage,

Susan

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 5/19/2013 - 1:57am
Replies by: Anonymous
Join Us!  The NaturalNews Healing Summit will be available
(online) at no cost - starting Mon. May. 20th - details below:

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

bikerwifee's picture
Replies 7
Last reply 5/21/2013 - 9:50pm

Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

Login or register to post replies.

Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

Login or register to post replies.

So I posed a question on another post about Melanoma shopwing up in a different set of nodes other than the SLN 

It is about 9 months since diagnosis and surgery.

I could absolutely swear the "contours" of my right arm pit are different than the left.

I don't see my oncologist for about 5 weeks.

I see my neurologist in 2 weeks for a botox treatment for headaches and facial spasms. (Melanoma was on right cheek at base of ear.) 

Neg SLN Biopsy

over 1mm

mitotic 5/mm2

vertical growth 

clarks IV+

so anyway can you actually feel if the shape of your armpit is different is that nodes...i see people getting up in there and I just dont' know what to feel for lol

Login or register to post replies.

lrkg1234's picture
Replies 10
Last reply 5/19/2013 - 11:24am
Replies by: lrkg1234, kylez, aldakota22, Anonymous, MattF

We had a pretty crazy week at MD Anderson and not very good luck with our MRI, varying reports etc.  We still don't totally understand it and have had 3 opinions.  Please read below and let me know what you think. 

First doctor Patel calls us and says there are several areas on the brain that look like tumors, not sure how many, maybe some are scar tissue. She says that the radiologist says there was no contrast, but there clearly was and that she had other doctors agree that saw contrast.  She begins to tell us about possible SRS or Whole brain radiation.  I asked if she remembered that Scott has already had both SRS and Whole brain radiation.  She had not remembered that so things would obviously be different now.  She was not sure then if she could possibly be looking at scar tissue from the previous treatment.  NOT comforting, or cool waiting for several more days for an explanation.  The scan was done on Sunday and we didn't have an amended written report until yesterday, after we were back home in Indy.  

 

Here are the two reports, the preliminary and the amended. 

 

Technique, MRI of the brain without IV contrast-diffusion, axial T2 and axial flair were included. 

Findings:  There are areas of new T2 FLAIR hyperintensity in the left insula and bilateral left greater than the right anterior temporal lobes concerning for new foci of metastatic disease.  The previous enhancing lesions demonstrated are not well evaluated due to the noncontrast technique.  There is likely numerous enhancing lesions that have increased or that are new, however, cannot be evaluated due to noncontrast technique.  The orbital structures are unremarkable.  There There is no evidence for acute infarction.  The paranasal sinuses are clear.  There is mucosal thickening in the right mastoid air cells.  The left mastoid air cells are clear. 

Impression.  LIkely other foci of metastatic disease, however cannot be seen due to current technicque.  MRI with contrast is recommended. 

 

OK, then nothing else happens, no new MRI, just a change in report.  Here is the new ammended report. 

ADDENDUM:

It appears that the patient had IV contrast, which was not pushed over to PACS and given that now these images have been pushed over, it is noted theat the patient is status post IV contrast.  Multiple enhancing lsions as dtailed below:  then goes on to list a total of 7 lesions.  Some of these are new when compared with the prior. 

So, my question is what is reality? 

We got the disc yesterday in the mail and gave it to the radiation oncologist office here.  He calls my husband last night and says that it might not be so bad as 7 tumors, it might just be 2 and then treatment would be possible.  He is home with a busted knee until for a week and a half and says that we can deal with it then, or see someone else.  He does not believe it will make a difference in Scott's treatment to wait a week or so. 

This is just craziness. I think they clearly screwed up the MRI at MD Anderson.  Bad news is hard enough to take, but it would be nice not to be told a few different things.  What does everyone think of these reports?  What does it exactly mean to "push" these images over? 

Thanks for the help.  Lisa

Login or register to post replies.

SDJanku's picture
Replies 4
Last reply 5/18/2013 - 11:50pm
Replies by: Janner, malika, SDJanku

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

Login or register to post replies.

SDJanku's picture
Replies 1
Last reply 5/18/2013 - 5:25pm
Replies by: washoegal

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

Login or register to post replies.

Erinmay22's picture
Replies 2
Last reply 5/20/2013 - 12:50pm
Replies by: Erinmay22, kylez
A few weeks ago I had an editor from Everyday Health ask if they could film me for a piece on Melanoma for awareness.  Here is what they put together. 
 
 
It's nice to hear more and more folks talking about it.  Although we always see discussions of it go up this time of the year!  
 
As as update on me - I had scans again this past week.  The lymph node they are watching continues to shrink.  The lung spot that showed up 4 weeks ago is gone.  There was a tiny spot on my L5 vertebrae but the doctor didn't seem concerned at all about that (but it's much easier for him not to worry...)  But still feeling pretty good!   And hopefully all heading in the right direction! 
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Login or register to post replies.

ljhncj12345's picture
Replies 8
Last reply 5/24/2013 - 1:51pm

I read this board frquently but seldom post anything.   I Was just wondering if anyone out there has had a good result after ony 3 ipi treatments.  My husband has had a rare side effect that put him in acute kidney failure. Steroids have brought kidney function back to normal but now they will not do the fourth treatment. Scans on monday and we fid out where we are on Wednesday.

Login or register to post replies.

sjl's picture
Replies 4
Last reply 5/22/2013 - 3:52pm

Hi - it's been awhile since I posted.  My husband's situation has very rapidly deteriorated in the last 3 weeks.  The tumors on his neck are huge, his face is distorted, he can't talk or swallow, one eye will not close and initial scans show that the melanoma is most likely now in the liver and lungs.  Further testing has not been done because it doesn't matter with the neck the way it is.  The tumors are pressing on the corotid artery and the jugular vein.  He is on oxygen and a feeding tube.  He's got blood clots in one lung.  Carbo/Taxol quit working, Yervoy failed, a round of Dacarbazine didn't seem to help and he just completed 5 rounds of radiation that seem to have slightly shrunk what we can see.  His situation is so bad that our local doctor didn't want to complete the radiation that was begun while he was hospitalized and under the care of his melanoma specialist two hours away form home.  He was rehospitalized to get the feeding tube under control and they wanted to complete the radiation so it was done.  Now they want to talk to us about a clinical PD1 trial.  What are your thoughts on this?  And who pays for it?  It would be done at the Hillman Cancer Center in Pittsburgh. I'm not sure if I've tracked down the correct trial or not but if I did it's a phase 1 trial.  He's cKit and BRAF negative, NRAS positive.  I want to go to the appointment as fully prepared as I can be so I can ask the right questions and have some idea of what to expect.

Login or register to post replies.

Hi,

I am new to this forum

I am stage 4 and I been NED for 12 + months after taking PD1. I was a complete responder on PD1.

To my surprise, I had my FU Mri brain & CT scans. CT results showed no tumors NED. BUT Brain MRI showed new MET in Brain 6mm. This is my first brain met and I am very scared. I am hoping that this is not the start of multiple brain mets.

I have researched SRS and the results are mixed tosuccessfully killing  the tumor completely. Also the side effects of SRS and the radiation killing healthy cells is something that I concerned about.

I have been reading  about Proton therapy for brain mets. Research says Proton therphy has  less side effects & less damage to healthy cells.

Has anyone treated their Brain Mets with Proton Therapy & what were your results? Was the treatment successfully?  Any short term and long term effects?

MD Anderson has an outstanding Proton Treatment Center. Anyone have their brain mets treated at MD Anderson. What kind of treatment did you get for your brain Met at MD Anderson??  Did MD Anderson give you a choice to have Proton Therapy?

I would hate to fly to MD Anderson, and then MD Anderson decides is to give me SRS and not Proton. I can get SRS near my home so I would only be going to MD Anderson for the Proton Therapy.

 

Thanks for  your replies to my post.

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 6/13/2013 - 9:04pm
Replies by: JerryfromFauq, Anonymous, washoegal

Does anyone have suggestions for a family member diagnosed with stage iv melanoma and no insurance? Unfortunately, we do not qualify for medicaid, but are far (very very far) from being wealthy.

Thanks!

P.s. I already looked into every type of insurance - can't find anything.

Login or register to post replies.

Pages