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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Mom2Addy's picture
Replies 5
Last reply 1/29/2015 - 6:55am

Our journey began in 2009 with a melanoma removed from my husband's back, followed by surgery to remove 2 lymph nodes under his left arm.  Three years later, the CT scan showed that same area under his left arm lit up so more surgery to remove another 8-10 lymph nodes, followed this time by 20 treatments with Interferon.  Fast forward to 2014 with a clean scan (one questionable area marked to watch) in June to December, where the CT showed two spots in his brain, one nodule on his back, two on his leg, one in the right bicep and one on the chest wall.  They removed one nodule and it came back positive for melanoma.  Diagnosis, stage IV Metatastic Melanoma.  We were shocked beyond belief, especially because he hadn't felt sick and the nodules didn't cause him any pain.  In fact we were consistently told they were probably just fat pockets but having been a melanoma patient, knew we had to get them tested.  Is feeling perfectly fine, no pain and no effects of the brain lesions common?  Do others feel perfectly normal and yet get hit with such a devastating diagnosis? 

Just to close out, he did have steretactic radiation on his brain the first week of January and surgery last Friday to remove the nodules in his arm, leg and chest.  We are now awaiting the start of IPI, which has been delayed due to the heavy doses of dexamethasone (steroid) to treat the side effects of the SRS.  Again, other than expect side effects of the SRS and surgery, he still doesn't feel sick.  Just difficult getting our heads around this!

Thank you.

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rick1981's picture
Replies 10
Last reply 1/29/2015 - 5:54am
Replies by: Anonymous, rick1981, Bubbles, arthurjedi007, Ninniditti, Wader

....panRAF inhibitors.

Stage 1 trials just starting. These pills seems similar to BRAF/MEK in attacking proteins but use multiple paths making them potentially impossible to become resistent too. Promising!

(I can't paste the link unfortunately, anyone else having issues pasting text on MPIP?!)

 

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Jubes's picture
Replies 8
Last reply 1/29/2015 - 2:35am

Hi everyone

i had some scans today that showed the melanoma in my lung has shrunk from 7.9 cm to 3 cm. I also have 4 or 5 nodes in my chest with melanoma and they are almost back to normal size. I have had 9 infusions of keytruda and as my cough has reduced and I am feeling well, this was the first scan since I started on keytruda.

i just want to thank everybody on this site for their invalulable advice and support, especially artie and celeste, but really everybody. Thank you from the bottom of my heart and I sincerely hope that you all have positive outcomes like this and find the right team of doctors for your needs, as the research seems to be moving fast in the right direction.

Thanks again

jubes(aka Anne-Louise) 

 

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alfreym1's picture
Replies 3
Last reply 1/29/2015 - 12:19am
Replies by: Cynthia C, Prd10, SABKLYN

I was diagnosed with Stage 3a in 2007 while pregnant with my first child. Soon after he was born I underwent 3 surgeries(excision of the mole area, lymph node biopsy and later the complete removal of my lymph nodes because 2 came back positive). I went through 1 month of intensive immuno/chemo therapy followed by 11 months of interferon treatment.  I am glad to say that I've been clear since 2009 but I still suffer from anxiety. Lately, my anxiety has been worse because I am pregnant with my second child and I'm concerned that the hormonal changes may cause recurrence.

Occasionally within the past 3 to 4 years I have experienced unusual symptoms that somewhat resemble MS symptoms. I have seen 2 different neurologist during the episodes but they've both told me I do not have MS. Although they couldn't tell me exactly what is going on with me, they did mentioned it could be stress/anxiety induced. The most recent neurologist I saw mentioned it could be long-term effects from the treatment but she also brought up that typically if there is any nerve damage from treatment, it is not episodal like my symptoms.

Has anyone else experienced this!? Any feedback will be much appreciated.

 

Maggie

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JustMeInCA's picture
Replies 2
Last reply 1/28/2015 - 11:52pm
Replies by: JustMeInCA, JoshF

Hi, all --

I posted this a couple days ago but think it got lost in the shuffle, and I'm completely overwhelmed with all the issues over the past few days. Dad was hospitalized after his PET/CT with pneumonia which caused rigors and delirium. He was discharged last night and is back home, but he's still a little confused and having cognitive issues (which were not there previously.) This they are blaming on the infection, as the elderly often exhibit confusion with systemic infections. On top of that, they lost Dad's upper denture while at the hospital, so I'm trying to find a dentist to get that done ASAP, though it seems it will be out-of-pocket. They also want him to do physical therapy, as he came out of the hospital rather shaky and unsteady.

I am also supposed to make a decision about what to do with his melanoma treatment. His PET/CT showed some shrinkage of his smallest tumors after four doses of Keytruda, but the largest ones have grown, most by just a couple mm but some quite a bit more.

For example, his report says, "Representative left lower lobe pulmonary nodule previously measuring 1.9 cm, now measures 2.6 cm ... Representative right middle lobe pulmonary nodule previously measuring 1.7 cm, now measures 2.3 cm ... Representative right upper lobe pulmonary nodule previously measuring 2.9 cm, now measures 3.6 cm"

The new tumor (since starting Keytruda) seems to be growing quickly: "Interval increase in size of hypoattenuating segment 8/4A liver lesion previously measuring 1.8 x 1.5 cm, now measuring up to 3.9 x 3.8 cm with interval increase in FDG avidityInterval from SUV Max of 4.0 to SUV Max of 7.5."

His doctor at UCSF, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

I haven't heard before of people switching from one PD-1 to another, nor do I know anything about Temodar. If anyone has any insight, I would really, really appreciate it. I'm getting to the end of my rope here and really am not able to think clearly enough (or have the time to investigate enough) to feel like I can make a good decision.

Thanks very much!

 

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Happy_girl's picture
Replies 24
Last reply 1/28/2015 - 9:56pm

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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AshleyS's picture
Replies 13
Last reply 1/28/2015 - 9:53pm

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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Jsneathen21's picture
Replies 10
Last reply 1/28/2015 - 7:33pm

For some reason I am overwhelmed with my skin graft it is causing me to cry just looking at it... I know it sounds weird but it just does it to me .. I'm not sure of this has happened to anyone else? Or maybe I am the only one who thinks it looks very disfiguring... It's only been two weeks of healing and it just looks so horrible and looks so deep ! and I can't help but cry when I see it! Is it stupid to get counseling for it? Do I need it? Please tell me how you delt with it! Thanks❤️

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vince1962's picture
Replies 7
Last reply 1/28/2015 - 3:52pm

Final Diagnosis [Microsopic]:  Right axilla, biopsy- A.Metastatic melignant neoplasm involving lymph node, immunohistochemically consistent with metastatic melanoma. An infiltrate of malignant cells that show strong positivity for S100 and SOX-10 is identified.  Can someone please help me with this as far as what stage this might be! I have no clue what all this means.

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If you want to chat you can email me @ jennifersneathen21@yahoo.com I can chat with you about anything your going through:) I am bored during the day and wouldn't mind the company!!! Feel free to email me and I can give you my cell # there :) 

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So my daughter who has the large liver mass, whom had liver embolization and four rounds of YERVOY just found out she is indeed Braf positive. Does YERVOY respond better if Braf? She has scans tomorrow and I'm praying the YERVOY is working. I'm guessing being Braf positive is better? Her LDH is way down from 8000 to now normal ranges. The wait until results next wed are torture. 

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JustMeInCA's picture
Replies 6
Last reply 1/28/2015 - 12:06pm

My father had his follow-up PET/CT at UCSF after four doses of Keytruda. While some of his smallest tumors shrunk or disappeared, the larger ones showed growth, in particular a new one on his liver which grew considerably from October to January. 

His doctor, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

Dad has been hospitalized since Thursday, as he started having violent tremors and increasing delirium  after the PET/CT. Luckily, we were at UCSF, so they got him admitted immediately. After many tests and procedures, they believe this was caused by a lung infection, and he has improved considerably after a few days of antibiotics.

I know that no one can really advise me here, but I'm just looking for some thoughts, experiences,feedback on what to consider in choosing the next treatment. I have much faith in Dr. Daud, as he's a nationally known expert on melanoma with much more experience with PD-1 than many, but I was clinging to the hope of that "delayed response". On the other hand, I can see his point of not wanting to waste too much time waiting for a response that more likely than not won't  happen. 

Any thoughts, my friends?

 

 

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Kmiles's picture
Replies 1
Last reply 1/28/2015 - 9:19am
Replies by: Janner

Ok, so October I recieved the call melanoma, November WLE and SNB bilateral results positive on both sides (right side 3mm left side 1mm) December bilateral lymph node dissection but finally we got a negative on the 53 lymph nodes removed.  

Three month regular dermatologist appointment yesterday and she feels like she has found another spot.  She did the biopsy and now we wait again.  

Did I mention I'm not good at waiting!  But these last three months have certainly been a bunch of hurry up and wait.  So if this comes back will it change my 3a stage? Will it change the treatment?  

in my heart I think this is not a melanoma.  My original one could have been holding a sign that read in flashing neon lights that read "hello, I'm a melanoma!"  This one looked very normal to me.  I don't think I'm wishful thinking here but we will know in a few days.  

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lsmith - MRF's picture
Replies 1
Last reply 1/28/2015 - 8:19am
Replies by: Maureen038

Hi all,

The MRF plans to host several Twitter chats in 2015 and we'd like to hear from you! What topics would you like to see our Twitter chats address? In 2014, we covered clinical trials, the importance of early detection and tips for coping with the stress of the holidays. Please post your suggests here on MPIP or feel free to email me at LSmithDyer@melanoma.org.

Thank you!

- Lauren, MRF

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ecc26's picture
Replies 8
Last reply 1/28/2015 - 7:33am

Hello everyone, 

It has been a very long time since I've had a presence on this board. I was hired by our local university in July last year and have been so busy between my treatment schedule and work obligations that I have completely lost touch with this board and the people who are on it.

I am happy to say that I am doing very well. I started PD-1 last June in Boston, which only lasted for 4 doses before the discovery of a 3.5 cm mass in my brain put things on hold. The mass was surgically removed in September and I did well enough pre and post surgery to only delay my next PD-1 by a week. By then FDA approval had come through and I've been able to get my infusions here at my local hospital, which has been very nice. My scans continue to improve, with my last CT in December and my last MRI on Jan 14 (they are not grouped together due to the craniotomy). The hope is that perhaps by this time next year things will have shrunk down enough or been stable long enough to consider a trial period without infusions. I haven't had the best of luck in the past with things lasting (or even working), but I hope that this is the one that does it for me. I had forgotton what it felt like to not live in such constant fear, though I don't trust things quite yet.

I'm really enjoying my job and feeling well enough to do that and get back into a regular exercise routine, etc. I'm aware that some of you are not getting the results you were hoping for and all I can really say is that I'm pulling for you. 

Wishing everyone out there the very best and hoping that you find the thing that really works for you!

-Eva

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