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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Gene_S's picture
Replies 2
Last reply 1/30/2015 - 9:02pm
Replies by: Anonymous, arthurjedi007

Does anyone know how Mark is doing?  He was from Ohio near Akron and was going for a different treatment but I haven't seen a posting from him in a long time and was wondering how he is.

Judy (loving wife of Gene - Stage IV and now NED)

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

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RJ3109's picture
Replies 6
Last reply 1/30/2015 - 7:38pm
Replies by: RJ3109, Anonymous, brewgirl68, Janner, Jubes, JustMeInCA

My brother, age 66, was just diagnosed with melanoma when a "knot" under his right arm resulted in the removal of 10 lymph nodes and the biopsy came back "melanoma".  This was  2 1/2 weeks ago.  He has since had full body CT scan that was clear and a PET scan that showed 8 mm spot on right lung and additional small spots in lymph nodes under right arm.  He has appointment with oncologist next week, but we are trying to gather as much info as possible as quickly as possible.  And I must say that just reading the postings on this site has has been very helpful to me.  

My questions, for now, are:

1.  Should he have MRI on brain or are the CT and PET scans sufficient?

2.  Would the CT and PET scans have identified a primary site if one exists on his skin?  He has not seen a dermatologist as he was unaware of any potentially cancerous places on his skin and the melanoma diagnosis was totally unexpected.

3.  While he has appointment set up with oncologist next week, I don't believe he is a melanoma specialist, and after reading here how important it is to see someone who is, I'm wondering if he should ask oncologist for referral to melanoma specialist before anything else is done.  He lives in Mississippi and will have to travel to reach a specialist, but that is ok.  He will go anywhere.

4.  Should he contact the general surgeon who removed the lymph nodes to see if they are being tested to identify any specific mutations (I understand that takes time) or wait till he sees oncologist.  

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sgrain's picture
Replies 14
Last reply 1/30/2015 - 1:27pm

I recently posted my history with melanoma and the drugs I've tried lately, including PD-1.  I only had 3 infusions for a 9 week length of time and then had my PET scan which showed new mets.  It was then that my oncologist said PD-1 had failed and we stopped the treatment.

My husband has done a lot of research since that time and we have seen many articles and graphs that show partial or complete response after approximately 15 weeks.   

I guess my question to any of you that are currently on, or have been on, PD-1, how long did it take before you had a partial or complete response, or how long did it take before your oncologist pulled you off it due to it failing?  My concern is that we didn't give it enough time.  Here are some of the snip-its he found:

“The anticancer mechanism of action is different with checkpoint inhibitors as compared with chemotherapy.  …  As a clinical consequence, antitumor responses that are delayed, as compared with those for chemotherapy or targeted agents, may occur because it may take time for an antitumor immune response to be mobilized and prove effective at killing tumor cells.  ”

“Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease.”

One of the Time to Response charts show many partial/complete responses not happening until well past 15 weeks.  

Delayed responses following initial increase in tumor burden also observed in some patients, indicative of immune-mediated response

Sandy

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rick1981's picture
Replies 23
Last reply 1/30/2015 - 9:30am

5 02:00

Hi,
My wife has stage iv melanoma and is on Pembrolizumab. Scans in december showed progression with nee tumors in her bones around her hip. No brain Activity on PET/CT.
She got her third IV yesterday and felt OK aside from Some pain around the breast bone. Blood OK, felt really good.
This night I woke up as she seemed to be choking. Called 911 and she is now in hospital. Had 3 attacks that look like seizure : epilepsy. Scan in an hour. 
Any ideas? Questions to ask?
Thanks

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_Paul_'s picture
Replies 6
Last reply 1/30/2015 - 9:11am

Just met with my oncologist today and I am going to start Keytruda on Tuesday. I was originally thinking to go with TIL if I showed progression from the Yervoy/radiation trial (RAD-VAX) I recently completed. However I just had a PET scan as part of the trial protocol, and it showed a new tumor at the back of my left shoulder blade and something weird lighting up between the toes of my right foot.

It will be weeks yet before I even know if the SCCA can harvest seed TIL from a large tumor that was growing inside my gallbladder which was removed last week.

My oncologist said my disease burden is low right now and since anti-PD-1 seems to be more successful when the burden is low, this seems to be the opportune time to give it a whirl. In a few weeks if the TIL can be grown, SCCA will store it cryogenically. So that will become my new plan B.

Like I have heard many people say here, now that I have made a decision (with the help of my oncologist) I need to stick with it and not look back.

Gotta say though, it feels like setting sail on a spaceship with destination unknown! But then again, I always did want to visit space... 8-)

- Paul.

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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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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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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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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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