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August 22, 2012 at 5:54 pm #55961Catherine Poole wrote:
He also is a believer in the red wine adjuvant therapy.
Any particular vintage?
😆August 22, 2012 at 7:32 pm #55962 Probably nothing we could afford!August 23, 2012 at 2:37 am #55963 When you interviewed Sam Donaldson – did any of his nodes test positive in the dissection? I am not interested in the Interferon, but I do know if any nodes test positive Wednesday, that WILL be the surgeons recommendation… It may even be her recommendation without a node testing positive, I really don’t know.
That is why I am asking about Sam Donaldson- any of those test positive?
GaylaAugust 23, 2012 at 12:42 pm #55964
Only one of Sam’s nodes tested positive. I know this because I’m in the same boat. Both of us had a single node that was about the size of an egg and that was the node in which melanoma was found.
As far as treatments go, all I know is that he declined interferon. I don’t know if he opted for any other treatment. Since Catherine interviewed him she should be able to provide more detail.
When I had the remaining lymph nodes removed it took two weeks to get the results. You will probably be on a similar timeline.August 23, 2012 at 10:21 pm #55965jimjoebParticipant
I had a lymph dissection in June 2011. I had one drain for six weeks, probably because I didn’t know about the stripping for the first three. 😯
I had no other treatment (declined interferon) so it was only a matter of keeping things clean, measuring the fluid and stripping.
To keep the drain in place I experimented with a few different things: safety pin, tensor bandage (like you would use for a sprain) but what really helped was support panty hose from the department store. I’m told that it also helped to minimize the swelling. As soon as the drain was out, I was measured for compression stockings that I continue to wear. Probably will wear them forever, if only for the peace of mind to be able to be as active as I want and not have to worry about my leg swelling and lymphedema setting in.August 24, 2012 at 2:00 pm #55966
There is a section on Sam in my book, Melanoma Prevention Detection and Treatment. I interviewed him in 1996 and in 2004. His original mole on his ankle (a blue nevus) was removed and deemed benign. Seven years later he had a positive node in his groin. He has a full node dissection at NCI. He will turn 80 next year and has not had any recurrence after 13 years since his node removal.August 24, 2012 at 6:33 pm #55967August 24, 2012 at 7:57 pm #55968cohanjaParticipant The original one deemed benign was actually the culprit?August 24, 2012 at 10:17 pm #55969 From what I understand it sounds more like he had an unknown primary. The mole he had removed years before was benign. I’m not sure if it was related to his melanoma.August 25, 2012 at 4:23 pm #55970 Pre op is Tuesday and the complete node dissection is Wednesday- I will update the experience and progress so that anyone needing the info can read my experience- I am expecting it it be a POSITIVE one:)
It’s not the destination,
It’s the journey that matters….
Keeping the faith
Stage IIIAugust 25, 2012 at 5:09 pm #55971MicadaParticipant
Here are a couple more hints on how to manage the drain. I truly meant to post these earlier but forgot my password!
I had right inguinal lymph node dissection on July 12th. The surgeon took 9 and 2 were matted together and contained melanoma cells. The rest and all surrounding tissue was clear. I had a SLNB last August with one node with micro mets. My brain MRI and PET in October were clear. I chose to wait and weigh my options, get second opinion (and third). In December, I did one month of interferon alfa 2b. I tolerated it okay, other than tiredness and a fever each afternoon which I combated with 2 extra strength Tylenol about 2 pm. Worked pretty well. In April 2012 my PET lit up with a “lump” in the groin area. My onc, pcp and surgeon were pretty well tuned to the fact that it was melanoma in a node so we scheduled the dissection. I got shingles in the meantime so had to put the surgery on hold for 6 weeks. Who’d figure that, huh?
The surgery went well and I went home 2 days later with a drain and a walker. No weight bearing on my right leg for at least a week. I had stocked our freezer with small meals (I’m caretaker for my elderly husband so was somewhat challenged and had to think ahead and prepare. My daughters, both RNs, live on the East Coast and I am in Arizona.) That worked okay. Had friends and co-workers to give me rides to the doctor. He let me walk without the walker after 9 days. That was a big YES!!
Okay – to the hints – I bought 3 sundresses that were easy to pull on over my head, cute and functional. As far as the drain, yes, it leaked a bit but he said that was okay. Just put gauze around and under it, tape it (I became the tape queen!). I borrowed my husband’s knit boxers, the kind with longer legs. This protected the incision and the site of the drain with something soft and comfortable. I was able to tuck the tubing from the drain up under the leg and put a piece of tape to hold it. That worked okay. In between times, I took a passport holder, lanyard style, and pinned that to the waistband of the boxers or to the inside of my skirt. I could pin the drain to it and put the tubing inside. That was my pcp’s suggestion and it worked pretty well. The drain was in for 32 days before the surgeon pulled it. It’s healing okay.
A physical therapist came to the house and give me some exercises to do. It was 4 weeks before the surgeon wanted me to do leg exercises with lateral movement of the right leg (out to the side). It feels okay now and I have been practicing going up and down stairs at my office. I have developed lymphadema and see a massage therapist each week who is a trainer for lymph drainage. On Sept 11, I begin therapy at Virginia Piper Cancer Center in Scottsdale – their lymphadema clinic. I called in June and that was the first opening I could get. I was thinking ahead. Not many therapists here, surprise! I’m getting it under control with the goal of riding my Peruvian Paso stallion in March in competition. And, I will.
Sorry that this is so long. Just a lot to say.
Rancho MicadaAugust 26, 2012 at 3:23 am #55972
Thank you Michelle for the helpful tips!
I have already purchased the dresses- I will certainly get the other things as well.
I have NO idea what one of these even looks like so any suggestions will be helpful.
I was diagnosed on July 12 by my derm, sent straight to an oncologist surgeon and immediate surgery, WLE and SNB- node # 2 is the suspicious one- could not determine if cells found were nevus or melanoma…
That’s the reason for staging at IIII and total node dissection next Wednesday.
I am praying no positive nodes present so I can wait and watch without further treatment…
I have a 6 year old and MUST remain active- I cannot impact his quality of life so I know I will come through this-
Again, thanks for the info!
Without an oncologist- I’m not getting the answers I need but when I go for Pre- op on Tuesday, I am certainly going to ask for a referral to one.
FAITH IS NOT KNOWING WHAT GOD CAN DO, IT’S KNOWING WHAT HE WILL DO!August 26, 2012 at 11:24 am #55973
Sam went to PIttsburgh and met with Dr. Kirkwood who is a strong proponent of interferon. He told me he couldn’t afford to lose energy and time from work for something unproven to extend his life, so he turned down the interferon and never looked back. His original mole was the culprit according to Rosenberg, his doc at NCI.
But I hate to get away from the orginal post here. Some very valuable advise has been given on coping with the full node dissection, thanks! Gayla, I hope all goes well for you on Wednesday and you can touch base with us here to let us know..August 26, 2012 at 7:54 pm #55974
That is EXACTLY how I feel about the Interferon- I just don’t want to loose the energy and quality of life with my 6 year old and my husband!
We were living the dream, then all changed on July 12- I have to get back to MY life, get this out of me and keep my healthy lifestyle up and move on!
Praying all nodes are negative- 2 more days to go:)
GaylaAugust 26, 2012 at 11:46 pm #55975washoegalParticipant
Wishing you all the best if I don’t post before the surgery date! Keep up a good attitude. Try to remember, it will all pass in time.
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