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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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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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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Anonymous's picture
Anonymous
Replies 10
Last reply 2/6/2015 - 11:55am

My grandfather was recently diagnosed with Metastatic Melanoma. A brain tumor was found in the cerebellum and CT showed multiple nodules and a large mass in my lungs. After lung biopsy I was diagnosed with Metastatic Melanoma. I found a melanoma specialist for him who immediatly sent us to a neuorosurgeon. The next day my grandfather went through a 6 hour brain surgery to remove the tumor. Everything went really well!! I was so extremly nervous for my 83 year old grandfather to go through something as tramatic. Believe it or not he was walking the very next day. Now that the brain tumor is removed he has to have 5 treatments of radiation to the site. We were originally told he only needed one treatment of radiation but the Dr thought it was safer for him to break it up into 5 because of the incision size and his age. That started today. But the one I am really really worried about is the Yervoy. He starts that tomorrow and is also getting some pills (forgot the name) that he has to take at home before bed. The Yervoy is only once every three weeks. After reading up on it I am so very nervous for him to take something so risky with so so many side effects. I dont think I have read a single good thing about it. Has anyone had any experience with this good or bad. It will be very helpful to have some extra insite or to get a heads up of what to look out for. Although my grandfather is 83 he is a very young and active 83. This is why we are trying to fight this. But if the quality of what he has left of life is bad then I dont know if its really worth it. 
 

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Hello, 

I am here to help my dear friend of 40+ years... I work in the brain cancer field and she reached out to me for help with her dad who was dx with Spindle Cell Melanoma in December.  Her dad is 79 and otherwise healthy.  He presented with a bump on the top of his head... No lesion, no mole... a bump from the inside of his skull (very tip top of his head).  He noticed it back in May and had his dermatologist check it again in September... Nada... No biopsy until December.  

Breslow Depth of 4.4mm, Clark Level IV, mitotic rate of 3. 

The confusion is that the oncologist suggests Wide excision with Sentinel lymph node biopsy, but the head/neck surgeon says no to the SLNB... 

I have been reading up on Desmoplastic  Melanoma vs Spindle Cell Melanoma. Not sure I fully grasp the differences yet... trying to play catch up here prior to his Surgery on Monday for a very wide excision and difficult fix job... Either will need a skin graft or a Free Flap (live tissue transfer from his left arm). 

I would love to talk to anyone with experience here... Reading up on this is confusing. 

 

Thank you!

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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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MindyD's picture
Replies 5
Last reply 1/30/2015 - 9:06am

Has anyone developed this condition after axillary (arm pit) lymph node surgery?  I don't see my surgeon for my next follow up until next Tuesday, and have not confirmed that I have it... But based on what I've read, it sure does look and feel like exactly that.  2 visible "tendon like" cords that run from the incision down the back & front of my arm, into the elbow.  It's extremely tight and painful when raising my arm or stretching to reach something. My range of motion is more limited now than the day after surgery. Any suggestions for pain relief?  

- Mindy

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Anonymous's picture
Replies 21
Last reply 1/31/2015 - 1:13pm

Greetings. 

My wife was diagnosed in early October with melanoma after noticing a new mole on upper back in August.  She had wide excision and 2 sentinels removed with melanoma 1mm and 2mm.  Axillary lymph nodes (full LND) removed for remaining nodes a few weeks later.  Stage IIIB with nodular melanoma and 3.6mm depth.

We have been through alot emotionally these past few months needless to say.

We met with Oncologist at MSK right after the full LND who specializes in melanoma and on schedule now for CT scans and MRI on a regular scheudle.  They don't suggest interferon.  And they didnt suggest any clinical trials available which sort of surprised me given its a hospital that specializes in this, so the other option is "watch and wait". 

This is going to be a difficult journey so any words of advice would be helpful.

 

Thanks,

Michael1212

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/27/2015 - 2:20pm
Replies by: Anonymous, Janner

I am scheduled for a re-excision of dysplastic nevus.  However, I received my path report and would like your input.  Diagnosis:  Compound melanocytic nevus with architechtural and moderate cytologic atypia.  Conservative re-excision is advised.  There is a broad proliferation of enlarged melanocytes arranged as solitary units and as nests within the epidermis, predominantly at the dermo-epidermal junction and within the papillary dermis where there is fibroplasia, telangiectases and a a patchy inflammatory cell infiltrate with melanophages.  There is moderate cytological atypia of melanocytes within the intraepidermal component.

Can you tell me what this means and if re-excision is necessary?

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Mom2Addy's picture
Replies 6
Last reply 2/2/2015 - 1:00pm

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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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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Paladium's picture
Replies 4
Last reply 2/7/2015 - 7:07am

Hello everyone,

 

After reading on this board for quite some time I find myself in the position of asking for some advice about an upcoming decision I have to make concerning an unsuspected proposition in changing my therapy plan.

I'm a 50 year old male from The Netherlands first diagnosed in 2005. A 9mm ulcerating (I suspect nodular) melanoma tumor was removed from my left calf. Both sentinel nodes harboured a 2mm tumor each. Both superficial and deep lymph node station in left groin where dissected. No further metastasis where detected in these nodes.

In 2011 the first single in transit metastasis was discovered about 8cm from the primary tumor location.

In 2013 a single metastasis was found in the scar tissue from the 2011 surgery. A full body PET/CT scan showed 7 smaller tumors in what is believed to be the abandoned lymph vessel(s) connecting primary and sentinel nodes. Further examination of the image showed a lesion deep within the abdomen between a large blood vessel and the bladder. 22mm in diameter most probably a lymph node. Surgery at that time was considered too risky. Stage IIIx became stage IV. A biopsy of that lesion confirmed it was melanoma and luckily it turned out to be BRAF positive.

Systemic therapy started with Tafinlar\Mekinist which reduced the diameter from 22mm at baseline to 14mm in about four months. Since then the tumor burden has been labeled stable. At about the median PFS for this combo therapy my oncologist suggested to switch over to Yervoy given the fact she had no real clue on how long this stable fase would last. Moreover my excellent fysical fitness would be no deal breaker in regard of the more serious adverse effects associated with Yervoy.

Apart from some major fatigue the Yervoy therapy was completed in December of 2014 without any troublesome side effects. After completion of the Yervoy treatment the 2 week scan showed growth to 23mm diameter, 4 weeks later grown to 25mm. Current size and rate of growth makes it difficult to say whether Yervoy has failed or not at this point in time. A pre Yervoy MRI scan showed no evidence of brain tumors.

Given the fact that since the tumor burden hasn’t increased in number and only at a moderate rate in size over the past 16 months - even after quitting the inhibitors - the proposition is to remove the tumor in the abdomen by surgery, dealing with eventual problems coming from the leg tumors if and when they arise. Radiation surgery would be no option considering the delicate nature of surrounding tissues and toxicity. Some – believed to be - nodes in the immediate surroundings of the target lesion are labeled suspect.

At the moment I can appreciate the rationale behind this – at least to me - unusual move. It sounds promising given the fact that a major source of potential melanoma settlers is physically and radically removed from a critical location within my body. As usual I’m fully aware there aren’t only upsides associated with this plan.

What are the downsides that have to be taken into account to come to an intelligent decision?

Many thanks in advance,

Ben

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Jsneathen21's picture
Replies 11
Last reply 2/10/2015 - 11:11pm

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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kluft's picture
Replies 5
Last reply 2/15/2015 - 8:12am
Replies by: Anonymous, sharebear

On Friday I wen to my new oncologis for results of my latest PE scan and the results were not at all what we expected. After 4 doses of Anti PD1 drug Keytruda my cancer has spread.. So frustrated. Now recommending I take Arbrane (chemo) to stablize the cancer till a clinical trial opens at SCCA . I felt so blindsided that I forgot to ask about the trial. Has any used Abraxane ?? What were the side effects. 

 

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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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About 2008 my dad was diagnosed with Melanoma on his head and forehead. The doctor removed it and on both samples it showed clear margins. fast forward to December 4th 2014 my dad was playing poker which is a pretty routine thing since he retired. A lot of the people know him there and noticed that he was acting strange so they called for an ambulance. Thinking he may of had a stroke they did a CT and later an MRI, they found a total of 18 tumors in his brain. The largest ones are not operable because they are so close to the brain stem. They scanned his chest and abdomen and found a large tumor there 4cm x 5cm. It is likely that he has lymph node involvement also. They did a biopsy of the tumor in the lung and that came back BRAF Negative. Not sure really what that means. He has been on steroids for brain swelling, anti seizure meds, and ativan so he can sleep because those steroids were only allowing him to sleep for 3-4 hours. He has had about 10 whole brain radiations done, now we are going to start on immunology and I beleive Yervoy. Metting with the MD on Wednesday. What questions should I ask? I am a regisitered nurse, but my specialty has never been oncology, so I am lost. I am devestated and not ready to lose my dad, I love him so much. Any help is greatly appreciated!!! 

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