Newly diagnosed within last two months

Posted By
MLWHIT
11/12/2017 11:18pm
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Replies: 10

I have stage three and it was found in the lymph node after sentinel node biopsy.  Still waiting on some further scans for validation that it hasn’t metastasized to other areas of my body. I will consult for first time re immunotherapy on Wednesday.  I discussed removing remaining lymph nodes vs taking a wait and see approach.  Due to the fact that these lymph nodes are in my groin area I am worried about the impact on mobility and likelihood of swelling in my right leg.  I am leaning towards the wait and see approach but wonder if I am missing something.  I have young sons and am thinking about the immediate participation in their daily lives, but scared that I may be making a decision that could impact my lifespan.  

Thank you for any insights  

 

MLWHIT

I’m 3b since 2013 still Ned. One fat node in armpit. They cut out the rest and clear. They didn’t have the immunotherapy like they do now. If I had to do it again I would do the following.

1.make sure see melanoma specialist -I went to Mayo in Rochester-glad I did-other places would have had me on interferon-not good

2. Yes I am glad they cut out all my lymph nodes. To help prevent lymphadema I exercise everyday and maintain a healthy weight-even a shade skinny

3. Go to all the appts and do all the scans

4. Question and research everything the dr tells you. You are responsible for your own healthcare-no one else!

5. Fight for your life-never give up. You have young kids that count on you! Kids need to see the never give up attitude-no matter what..

Thank you for your advice and encouragement that it gives me.  

MLWHIT

I also had SLNB in my groin and opted out of doing the full dissection, that was 2 years ago. Since then more info has come out to show that getting a full dissection does not improve overall survival. Here is a link for more info on that: 

https://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/in-...

So, I completely understand not wanted to risk lymphedema, that can be quite hard to live with, and there is no reason to put your body through that since there is no benefit. Even with 4 missing lymph nodes in my groin from the SLNB my left leg/ankle has issues when I travel. I went to Mexico a couple of weeks ago and within a few days my leg and ankle were totally swollen and there was no getting rid of the edema until I got home and could put it up for a couple of days. So, I can only imagine if that was an every day occurrence. 

If you are able to get Nivo (Opdivo) as adjuvant treatment then I would go for it. Most people tolerate it fine and it has better success rates than Ipi (Yervoy) as an adjuvant. I did Ipi in the adjuvant setting after first being diagnosed 3B, but after the 6th infusion I had a routine scan that showed the mel was back in a couple different areas. So I went on Ipi/Nivo combo and just finished my last Nivo infusion, it's been a year on that treatment, and it worked wonders with very few side effects. 

I know there is a lot to think about, learn, and digest with all of this. But, it really comes down to your gut decision and what you feel is best for you. 

All the best,

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Thank you so much!  You are right in that there is so much to digest and take in.  I appreciate the heads up about your treatment experience and I will keep all of this in mind as I go to my appointment with doctor about immunotherapy.   Hoping the MRI and PET scans I have today and tomorrow show that the questionable sights are just my body being atypical and not spreading of the cancer.

MLWHIT

This break down of current care and language I recently put together re: melanoma may be helpful:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

As might this latest info regarding adjuvant care: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/review-of-adjuvant-treatment-in-stage.html  

I wish you my best.  Celeste

 

Thank you Celeste.  I will probably have to read and reread to help it all make sense.  I appreciate the visuals too. I searched for melanoma specialists and thankfully the doctor that I am scheduled to see tomorrow did show up (only one for the hospital).  Two hours away there is a hospital that has three on staff. So I feel I have some options. 

MLWHIT

I would suggest asking your team of doctors their recommendation. After my WLE and SLNB i was left at stage 3a with limited options for treatments or trials.  After CLND another micro node was located (Stage 3C now) opening up radiotherapy followed by Opdivo.  My doctors suspected this would be the case and pushed me in the CLND direction.  For what it's worth, my PET scan and CT scan were clean except for primary tumor prior to surgery.  Scans are limited in locating micro nodes.

So far I have just been working with a surgical oncologist.  She just shared the most recent research.  I meet with the melanoma specialist tomorrow so I am thankful I will be armed with so many questions and I hope to gain enough information to make a good choice for me.  

MLWHIT

I have discussed this fact with my onc. who is a mel specialist and she is completely for it. I had mine taken out 4 1/2 years ago in the groin. I also have 4 young boys so I know what its like to "have " to be there. I do have lymphedema and yes some minor adjustments had to be made for that but my outlook is "who cares, I'm alive." When I first joined this group the statistics were horrible and I just felt like I was going to do whatever needed to survive. Treatments have came a long way since then so the statistics dont matter anymore. Bottom line is this disease is unpredictable and you need to do whats best for you. Your family will learn to adjust. Maybe you will need a little help, everyone does at one point or another! Good luck with your decision.

Thank you, I appreciate your perspective and all of this helps me formulate questions to ask to make the most informed decisions for me in my situation. 

MLWHIT