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September 28, 2012 at 9:07 pm #20652cut52Participant
Hello, I unfortunately got news today that one of two lymph nodes came back with 3 microscopic foci plus scattered malignant cells with the largest being 0.35mm. The other node is clear. I will be doing a complete node removal of my groin area in about two weeks or so, just waiting for surgery date. CAT scan came back good. I know I will be probably offered interferon, but I think I am on the fence reguarding that treatment from all I have read. My hope is that the rest of the nodes removed will come back clear. My original biopsy was 1.98mm, non-ulcerated, mitosis of 6. I have some idea what to expect reguarding lymphedema, but would appreciate comments on that and adjuvant therapy. Thanks, DaleSeptember 28, 2012 at 9:17 pm #56762Catherine PooleKeymaster We have lots of experts on lymphedema, but what I have heard, physical therapy seems most useful. As for adjuvant therapy, there is very little but a few clinical trials. Where would you be able to travel to? The most common trial is the interferon vs. Yervoy. The Mage A3 is very promising but not sure of openings on that. Again, depends on your location. Sorry to hear this news, but we will provide you with as much support as we can!September 28, 2012 at 11:01 pm #56763LinnyParticipant Some doctors still offer interferon as a treatment option but fewer are doing it. Interferon is rough and it really doesn’t offer a huge advantage over “watch and wait”. Whether or not you decide to go on interferon is a personal choice. Some people are not comfortable doing nothing while others prefer to not give up a year of their life dealing with some rough side effects.
There appear to be some MAGE trials going on that may be worth asking your doctor about:
http://clinicaltrials.gov/ct2/results?term=MAGE+melanoma&Search=Search ” class=”bbcode_url”> http://clinicaltrials.gov/ct2/results?term=MAGE+melanoma&Search=SearchSeptember 29, 2012 at 9:57 pm #56764Shirley ZParticipant Hi Dale,
I had a groin LND six yrs ago. It was not an easy procedure for me and I had some really bad issues with lymphemema. The key is to stay on top of things. If you start noticing issues talk to your medical onc and have him write you a perscription for therapy. It should be done by a professional that has been trained specifically for lymphedema therapy. Some hospitals have clinic available on site. My therapist said 1 in 4 people with LND’s develop it. You may be one of the lucky ones that does not.
It worked wonders for me. I still have a lot of issues with traveling. Being on my feet too long or sitting too long causes problems for me. Weather changes effect me also. I guess after 6 yrs I know pretty much what will irritate it. It does get frustrating at times, But a small price to pay for still being here to enjoy my family and friends.
I’m a stage IIIC. Very poor prognosis, but living proof after 6 yrs that you should not rely on stats.
Good Luck to you!
Shirley ZSeptember 30, 2012 at 3:39 am #56765msue5Participant
My Surgical oncologist set up an appt with Lymphedema Dr before I even had my dissection. They took measurements so they could compare to after surgery. As soon as the drains come out they can start therapy. I use a compression pump 2xday for 45 minutes and use my compression stocking when I travel or if I’m going to be on my feet for a long time. The humidity is what affects my lymphedema the most. Wishing you the best.
Mary SueOctober 5, 2012 at 3:47 am #56766GaylaBParticipant
My dissection of nodes in right groin was August 29th and I am recovering fairly well. Just remember to take baby steps, that was my mistake the first few times I felt good, I would overdo it and set myself back and end up with a swollen leg.
None of my nodes tested positive that were taken during the dissection and my PET came back clear. Dr Rizzo felt the necessity to do the dissection because during my WLE and SNB – there were some micromets that could not be determined in they were melanoma or nevus. The dissection is much harder to recover from than the WLE and SNB. I wish you luck and you will be in my prayers . My drain only stayed in 2 weeks and my next appt is November 6- that is when we will discuss the treatment – hopefully watch and wait!
GaylaOctober 5, 2012 at 5:43 am #56767cut52Participant
A big thank you to everyone who has responded!! It is always comforting to be in contact with people who fully understand what we are going through. My surgery date for LND is October 16th. Hospital stay should be a day or two. I have an appointment set up with my Medical Oncologist for the 09th of this month. I am quite sure my mind is made up to decline interferon after hearing so many bad stories about it and not much benefit. To Gayla, we are almost in sync with what we are going through. My original diagnosis was July 17th. I will definately take it easy after surgery, trying to mitigate swelling and lymphedema.
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