- This topic is empty.
February 10, 2015 at 7:10 pm #22361daveaParticipant
I am writing on behalf of my daughter looking for anyone’s experiences on lymph nodes and any trials. She is am a 31 year old, otherwise healthy, female that was recently diagnosed with Stage IIIA melanoma. She had the original melanoma removed and a sentinel lymph node biopsy completed, from which one of the two lymph nodes removed contained microscopic melanoma. Pathology confirmed the presence of the BRAF mutation in her melanoma.
We live in Ottawa, ON. Currently, the only clinical trial available at the Ottawa Hospital for Stage IIIA melanoma is ‘A Phase III, Randomized, Double-Blind, Placebo-Controlled Study of Vemurafenib (RO5185426) Adjuvant Therapy in Patiently with Surgically Resected, Cutaneous BRAF-Mutant Melanoma at High Risk for Recurrence (GO27826, OCREB #12-030)’. This trial would require all of the lymph nodes be removed from her right groin. While she is very interested in participating in a clinical trial that targets the BRAF mutation, we are not currently convinced that having the groin dissection would be the ideal path, as we have been informed that the dissection would not have an impact on future survival, but does carry the potential for long-term side-effects.
We are wondering if anyone is aware of any other clinical trials that may be a fit and that may not require the full surgery. we know that there was recently a trial for another BRAF inhibitor combined with an additional MEK inhibitor (dabrafenib and trametinib) available in Ottawa, it is recently closed (and also would have required surgery). From what we’ve read, this combination had even more promising results on those with metastatic melanoma. Any insight into the availability of these trials elsewhere would also be helpful. She is willing and able to travel if there is a good option.
But the key question, as I know this is long,are anyone’s experiences with lymph remove and Vemuranafenib. It seems to be a big step to remove her lymph nodes (a requirement for the trial) to then be 50/50 to even get the drug. More so while it has been shown to help in phase 4 does anyone know how well. The side effects we are told are harsh when it may or may not even have any impact on it coming back. Any thoughts/experiences? What are most people in stage 3A doing? Waiting and watching, hoping to be on the right side of the coin toss?
DaveFebruary 12, 2015 at 4:48 pm #66349charissa1969Participant
I was diagnosed Stage IIIa after a WLE on my calf and SNB of my left groin in August 2013. My surgeon recommended a complete LND just 2 weeks after my first surgery. I am so glad you are taking a step back and considering all the options before making a decision. Catherine (from this board) recommended asking about a partial dissection since mine was also a microscopic metastasis, but my surgeon did not agree so I proceeded with the full LND. There were no more nodes with cancer and I have chosen to get scans twice a year and see my derm every 3 months. I have had no recurrence (I am now 18 months out) and I feel good overall. I do have lymphedema in my leg that I manage with a compression garment. I am a dancer and have been able to return to dancing, just not as frequently. My leg often aches and there are areas that are still numb. I think looking back, I would have liked the option of a partial dissection, but barring that, I am glad I had the LND for piece of mind. I will be glad to give more detail and answer any questions you have from my experience if you want to email me privately at
CharissaFebruary 17, 2015 at 5:48 pm #66350Catherine PooleKeymaster
I would not think this trial would be beneficial to someone who is 3A. Please write me at:
email@example.com we can discuss other possibilities. Also, most are recommending the combination of braf/mek and not braf alone for efficacy. Full node dissection sounds very extreme for 3A. Was it micromet involvement?February 20, 2015 at 2:45 am #66351Happy_girlParticipant Hi Dave! I’m just visiting the board after not having been on here for a while. I don’t have advice on your actual question, but I did want to share with you a piece of my story. I was diagnosed at 30 (last April) 6 weeks after having my daughter. I’m now 31… And stage 3a also. I understand what your daughter is feeling. I pray that she is able to stay positive and k ow that she has hope! Never forget that!
From my experience, I needed to know my family and friends were with me 100%. They are and that means the world to me. It sounds like you are there 100% for your daughter too. Even if she doesn’t mention it, she is thankful!
Stay positive and have hope!March 9, 2015 at 8:05 pm #66352hope629Participant
Not sure if your daughter already decided on her LND, but my story is very similar to Charissa’s. I was diagnosed with stage 3A after WLE and SNB on my left foot from a mole removed this past August 2014 (8 weeks after giving birth to my first baby). I decided to have the full LND after reviewing my options with my surgeon and family. I needed the piece of mind. I only had 6 lymph nodes removed in my left groin, all cleared, and I had the JP drain in for 4 weeks. I experienced a little swollen in my ankle and knee post surgery but wore the compression stockings and kept my leg elevated when I could. Today, everything is good, my PET scan came back all clear in January, and like Charissa, I’ll be scanned twice a year, see my oncologist every 6 months as well as my dermatologist in between visits for the next two years. I live in Philadelphia and all my treatment is a Penn Medicine with melanoma specialists. It is a whirlwind and shocking to get this diagnosis and having family support really got me through the initial diagnosis and two surgeries especially when caring for my newborn baby. Just be there for your daughter and all of her ups and downs with the diagnosis. You (*she) have to trust the healthcare team to provide the best care possible and present you with all options. I try not to log onto this site all the time since I just want to enjoy my life with my family but it has been a wealth of knowledge and support in times of uncertainty and when I needed hope. Prayers to your daughter and your family.
- The forum ‘Melanoma: Stage III’ is closed to new topics and replies.