Stage 3 and very worried

This moderated forum is to support the needs of patients with stage III melanoma, as well as to answer questions about treatment options and what to expect.
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Tracyyy
Posts: 12
Joined: Mon Dec 11, 2017 5:24 am
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Stage 3 and very worried

Post by Tracyyy » Mon Dec 11, 2017 5:25 am

Dear all,

Nice to meet you all here even though it is difficult for me to post....

My mother was diagnozed in 2013 melanoma stage 3. Until now everything was fine, she did all her regular scans. Lately she found out she had a swollen lymph node in the groin which is near the operated mole. She is having the node removed tomorrow, but all the waiting and not knowing is devastating to me and for our family... I cannot stop searching the Internet, i know this is not a good thing as every problem is individual but i am so worried. However, I found out that there are many people with 1 lymph node positive which have been NED after that. I would appreciate sharing some expercience because she means everything to me!!!

Sorry for my bad English, I am from Bulgaria. Wish you all good health!

Linny
Posts: 332
Joined: Fri Feb 03, 2012 9:24 pm

Re: Stage 3 and very worried

Post by Linny » Mon Dec 11, 2017 4:52 pm

Hello Tracyyy,

Sorry to hear about your mother.

Sometimes lymph nodes are reactive, meaning they swell, and it doesn't need to be from melanoma. But given your mother's history, it's good that the node is being removed and tested. I pray for good results.

I had one positive lymph node in my arm pit and have been NED since November 2010. I hope that brings some comfort to you.
Stage III, Unknown Primary; 1 positive node in left axilla

Tracyyy
Posts: 12
Joined: Mon Dec 11, 2017 5:24 am
Contact:

Re: Stage 3 and very worried

Post by Tracyyy » Tue Dec 12, 2017 1:48 am

Hello Linny,
Your reply definitely brings me comfort because I am a mess of feelings - anger, sadness..... I guess you can imagine.... I know the treatment after node removal is individual, but did you continue with some treatment?
Thanks again and I pray for you staying forever NED! I want my mom nearby for my wedding next year and long ago after that!

Catherine Poole
Posts: 11245
Joined: Wed Jan 02, 2008 12:09 am

Re: Stage 3 and very worried

Post by Catherine Poole » Tue Dec 12, 2017 8:05 am

Tracy, welcome! And your English is perfect, no worry. What has the doctor suggested to resolve this issue? Removing the node? Needle biopsy? Or other? My contacts in your part of the world who are expert in melanoma would be in Germany or in Brussels. Please tell us more. I will contact our partner in Serbia to see if he can suggest a nearby expert.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Tracyyy
Posts: 12
Joined: Mon Dec 11, 2017 5:24 am
Contact:

Re: Stage 3 and very worried

Post by Tracyyy » Tue Dec 12, 2017 4:55 pm

Hello, Catherine!
She had the node removed today and we must wait for the results for about 10 days - long enough to drive us all crazy! After that the doctor will suggest us terapies. I cannot stop reading about different terapies (keytruda, zelboraf, etc.)but each individual is different and unfortunately i am not an oncologyst :( We are seeing the best specialists in our country, but I have heard also good things for treating melanoma in Israel. Do you have some information about Israel?
Best regards!

Linny
Posts: 332
Joined: Fri Feb 03, 2012 9:24 pm

Re: Stage 3 and very worried

Post by Linny » Wed Dec 13, 2017 12:16 pm

Tracyyy wrote:Hello Linny,
Your reply definitely brings me comfort because I am a mess of feelings - anger, sadness..... I guess you can imagine.... I know the treatment after node removal is individual, but did you continue with some treatment?
Thanks again and I pray for you staying forever NED! I want my mom nearby for my wedding next year and long ago after that!
Thank you.

When I was diagnosed there were few treatments for Stage III melanoma in the US. I was offered Interferon, a vaccine clinical trial, or observation-only. There wasn't enough of a difference between interferon and observation-only for me to feel confident about taking interferon. Plus, I'd have to give up a year dealing with some nasty side effects from interferon. For me the clinical trial was the best option because I had a 2 out of 3 chance or receiving the vaccine and I would be under close observation. Sadly, the trial was canceled because most of the folks on it were doing well -- those who received the vaccine and those who received the placebo.

Stage III melanoma is a strange place to be in that most of the available treatments are geared toward Stage IV treatments. But that scenario is slowly improving.

Since you are in Europe, you might want to do some research on RigVir. It is considered a virotherapy where a virus is used to kill melanoma. Several different viruses are being evaluated at the present time. In the US we have T-VEC, which was approved not too long ago. RigVir is made in Latvia.

Catherine has a lot of good contacts throughout the world. I would take her up on her offer to find a nearby expert.
Stage III, Unknown Primary; 1 positive node in left axilla

Tracyyy
Posts: 12
Joined: Mon Dec 11, 2017 5:24 am
Contact:

Re: Stage 3 and very worried

Post by Tracyyy » Thu Jan 04, 2018 4:13 pm

Hi, I am posting an update - unfortunately biopsy results came back as melanoma in 3 of 6 nodes. The surgical team suggested PET scan, then local radiation in the groin and immunotherapy. However, the melanoma specialist we are seeing does not agree and suggests watch and wait and scans every 3 months. The only approved treatment for stage 3 in my country is interferon but he is against it. I know about the FDA approved treatment and I am so dissapointed that our options are so limited here...I know that watch and wait is also an option but I prefer us to do anything we could. I have read so much until now, even the doctor today asked me if I studied medicine, but I think being informed is the key. I also emailed some clinics in Israel as they apply some of the treatment approved in the US.
So has anyone been trough radiation or watch and wait for stage 3? I known it is an individual choice but I will apreciate some advice. I also know that there are many stage 3 and 4 survivors here which gives me hope

Tracyyy
Posts: 12
Joined: Mon Dec 11, 2017 5:24 am
Contact:

Re: Stage 3 and very worried

Post by Tracyyy » Tue Jan 23, 2018 10:10 am

Hi Catherine,

I could not find an option to post a private message so I will ask here as I know you have contacts worldwide - could you please suggest some treatment options near my country (Bulgaria)? My mum is scheduled for a PET scan on 02/12 and hope it will be clear. We are looking for options for adjuvant Opdivo/Keytruda for Stage 3B/C. Thanks in advance!

Catherine Poole
Posts: 11245
Joined: Wed Jan 02, 2008 12:09 am

Re: Stage 3 and very worried

Post by Catherine Poole » Tue Jan 23, 2018 10:50 am

Yes, you can email me at: cpoole@melanomainternational.org I will try to find my associate in Serbia and also the group I know in Europe. Interferon is not an effective drug, yes it would be best to go on immunotherapy. Is she BRAF neg or positive? WRite me and I will see how to connect you. How far is Brussels for you? My most trusted board member is there, Bart Neyns. He is excellent.
Catherine M. Poole, President/Founder
Melanoma International Foundation

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