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February 11, 2013 at 12:39 pm #21013bubbasmommaParticipant
I thought I would update the board with where I’ve been. I had a 1.05mm melanoma on my left leg- near my knee, non-ulcerated, clear margins. WLE presented clear margins and SLNB presented one of two lymph nodes with micromestasis… just a few cells as I was told by my physician. After much research, I concluded the recommended superficial lymph node dissection was not the route I wanted to take. If I had jumped when I met with the first oncologist, it would have been a full lymph node dissection. I did get a second opinion and ended up with the recommended partial (or superficial) dissection.
Along with the superficial dissection, CT/PET scans were recommended every 6 months. I was concerned with the level of radiation that the procedure produces, so, I’ve decided against it and instead opted to allow for the monitoring of my left groin by sonogram every 6 months. While the team could not recommend this approach because it is not “the Standard of Care”, my research helped me be comfortable with my decision. Additionally, I follow a low carb approach to eating and I take a lot of supplements. I am disappointed that not one physician suggested that I stay away from sugar, but then we all know that nutrition is not part of the “Standard of Care”. I thought that sugar might be bad if the PET/CT required radioactive sugar for the cancer cells to light up because cancer loves sugar. My own belief is that sugar is bad for anyone. I had my first sonogram, 7 months after initial diagnosis and my lymph nodes are normal. My lymph nodes were always normal by the way. My SN was normal. Also, the one PET/CT I had was normal. I had been wanting to take a poll early on to help with my decision, but decided against it because my mind was made up and I didn’t want to second-guess my decision. But my poll question was, “Of those who had micromestasis or one lymph node with melanoma cells, how many of you went on to have the lymph node dissection which resulted in no further disease in the lymph nodes?” Thanks for readingFebruary 11, 2013 at 3:23 pm #59051Catherine PooleKeymaster
One size doesn’t fit all in medicine and I like your approach to making a decision for your procedures and follow ups. We don’t truly have any answers yet on whether complete node dissection is better than partial but it is being studied. I am also one that doesn’t believe in excess scanning. One time for baseline each year is probably adequate unless you have symptoms. I have to disagree on the “sugar theory.” I’ve not seen scientific evidence that sugar stimulates growth of cancer. But a healthy balanced diet, and lots of exercise with time out for meditation have been proven as helpful. Congrats on making up your mind and being a great advocate for yourself.February 11, 2013 at 4:43 pm #59052 Hi BubbasMomma,
I had just one lymph node affected and was not offered a sentinel node biopsy. All the lymph nodes in my left arm pit were removed. When I asked my oncologist why, he said it was because I had an unknown primary. As of my scan 2 weeks ago, I am just over 2 years NED.
I had a scare after one scan when the oncologist told me they spotted something abnormal near the surgical site and ordered an ultrasound and fine needle biopsy for me. Turns out the abnormality was nothing more than a bulging blood vessel, all part of the healing process. But during the course of the ultrasound we also learned that I have no more lymph nodes left in the affected arm pit. The surgeon got them all. For me, that was a good thing to learn. I was surprised that it wasn’t done as part of a routine check up after the surgery.
Medical doctors aren’t nutritionists. Most of them have a general knowledge of the field but that’s about it. Also, put yourself in your doctor’s shoes: let’s say he/she gives someone nutritional advice and it didn’t work out — people these days are so sue-happy that your doctor could wind up being sued by some nut for giving “bad” advice.
Eating right can’t hurt. If anything, it’ll help keep your immune system in good shape.February 11, 2013 at 11:28 pm #59053washoegalParticipant
I like your decision. I like you thought process. I too had 2 nodes with micro-metastasis. I had complete lymph node dissection. NO FURTHER DISEASE. Unfortunately i have probably had every bad reaction to it possible from nerve damage to lymphedema.. But I am still good with my decision. I think you have to consider other factors, I had what I would consider a relatively deep Mel 3.7 MM and certainly the mitotic rate was fairly high 15. So for me felt I would rather know for sure.February 12, 2013 at 1:14 pm #59054 I had forgotten to mention that initially I had felt that my surgery was “overkill”. But after I came across an article in the Journal of Clinical Oncology about patients who had melanoma with an unknown primary (MUP) that used the term “potentially curative” in conjunction with regional lymphadenectomies, I no longer felt that way. This definitely gave me something positive to focus on and I needed it.Quote:
The favorable postoperative prognosis of patients undergoing lymphadenectomy for clinically palpable nodal metastasis from MUP indicates the importance of an accurate staging work-up that includes complete imaging to rule out distant disease. Unless the results of this work-up are positive for metastasis beyond the regional basin, patients should undergo therapeutic (and potentially curative) regional lymphadenectomy as the standard of care.February 12, 2013 at 4:03 pm #59055TreeFrogParticipant
I, too, like the way you think! I like the way most of us think on here.
In your position, being myself, I would likely take the route you have chosen. In many developed countries the standard of care is less invasive, consisting of scans or sonograms rather than surgery. On the other hand, those choosing surgery can be encouraged by experts who consider lymphadenectomy potentially curative, as in the quote that Linny posted. It’s all a very personal decision, but what we are aiming at is proceeding through our lives with optimal safety and a minimum of doubt.
Best wishes, all,
~WendyFebruary 16, 2013 at 3:20 am #59056XCguyParticipant
Sounds like you thought it through really well.
FWIW, I was diagnosed IIIa in July, 2010. Had a 1.45mm Breslow depth melanoma on my left bicep, mitotic rate 11, no ulceration, small focus of 1mm melanoma in one lymph node. I opted for the lymphadenectomy after reading a similar medical journal article about the potentially curative nature of such surgery. None of the 32 nodes removed tested positive.
Recovery from the lymphadenectomy was no fun. For months afterward, my arm hurt and my mobility was really limited. No lymph edema, fortunately. I still have light pain at times in my arm and can’t reach as well as I used to, but it’s nothing too bad.
As far as cutting out the sugar and eating a plant-based diet, I’m a big believer. I’m also on a bunch of immune boosting supplements. So far so good. Just had a CT scan in late December and nothing showed up.
One thing they told me at my last scan is that the research they’ve seen lately shows that there is no benefit to catching regional spread to the lymph nodes before it is palpable. They basically told me that unless something can be felt in my nodes in the future, they won’t order any more scans. Didn’t sound like such a great idea to me because what if there is some metastasis to an internal organ that cannot be felt? Anyone ever heard of this sort of approach?
Anyway, I wish you all the best and many years of NED-ness!February 16, 2013 at 9:54 pm #59057
I was uncomfortable after my surgery but I knew it would be a temporary situation and dealt with it that way. My surgeon had deliberately severed some superficial nerves to help with pain control. I thought it was a smart move on her part. The feeling has just about all returned to the area.
My friend, who’d had the double lymphadenectomy, gave me some advice on stretches I could do after the surgery. I followed her advice and I do believe it helped get my mobility back quicker. After I got the drain removed I began doing stretches in the shower — mostly the “wall crawl” and they helped too. They day I was able to raise my left arm as high as my right was a day of celebration.
My mobility is fine but my arm aches every now and then also. There is a slight difference in my upper arm circumferences but it’s remained stable and is not even noticeable. I’m taking supplements as well.February 18, 2013 at 2:23 pm #59058GaylaBParticipant
Your Mel is exactly where mine was and I did have total dissection- SNB same as yours – micromets could not be determined as nevus or melanoma.
The dissection has ruined my life.
It has been 7 months, I have lymphedema, plus a 7 year old that needs an active mom.
Be glad you stood by your decision.
My dissection showed all negative so the SNB was certainly nevus
I was rushed by a surgeon, scared too death and now live a painful life. Compression, therapy, pain, lots if pain
Maybe one day a cure/ treatment will be found for lymphedema – meanwhile I have therapy at 1:30 today
Best of luck
GaylaFebruary 27, 2013 at 4:10 am #59059BunmomParticipant
I’m happy to have found this thread. I’m in the same position as many of you, stage 3a, micromets of 0.1mm to one SLN. I see the melanoma oncologist tomorrow and really, REALLY don’t want to have an axillary dissection. I’m still having issues from just the SLN–a bit of swelling and pain. However, I don’t want to have disease that spreads because of this decision. It’s a tough call.
Can I ask what some of you are taking for immune supplements? I’m interested in trying some of this and have changed my diet around somewhat to include a lot more organic fruits and veggies and less meat and very little, if any, sugar and breads. I’m also trying the 3 cups of green tea a day as well. I’m open to any other suggestions for helping boost my immune system!February 27, 2013 at 1:32 pm #59060
Changing your diet around the way you described certainly can’t hurt.
You have to keep one thing in mind with any supplements — they haven’t been “scientifically proven”. Labs won’t take the time in testing them because of the expense involved and the fact that you can’t put a patent on them and make money off them.
Now given that, there have been some studies done on turmeric/curcumin and melanoma. But I think the jury’s still out on deciding how effective it is. It is a common spice. You can buy it in capsule form and it’s best to get one that has piperine in it. Piperine is a black pepper derivative and it’s supposed to help it do its job.
I take something called Cellect for an immune booster. All I can say it that I feel pretty good and energetic when I’m on it and when I forget to take it I start feeling sluggish. Is it helping keep my melanoma away? I don’t know. But I certainly don’t object to feeling good.
Taking Vitamin D supplements can’t hurt but you may want to read this fact sheet from the National Cancer Institute first:
http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D ” class=”bbcode_url”> http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D
The thing to remember is that there are a number of sleezeballs out there who will take advantage of cancer patients. So you have to be really careful when researching supplements. My brother had sent me a link with a recording/infomercial on some supplement that would cure melanoma in 5 days. It also cured other diseases in miraculous times. It sounded too good to be true and with some effort I was able to find the name of the product and saw that it sold for $2000 for a 30 day supply.
😮And, they didn’t even tell you what was in it. 😮 😮 😮So be careful.April 5, 2013 at 8:00 pm #59061 My husband was diagnosed with stage 3 melanoma – nodular, located in his hair above his right ear. He had the first surgery Sept 3, 2010 (where it was diagnosed – the previous punch biopsy done in May 2010 came back negative but with a recommendation for it to be removed). It was a Clarke 5 level so very deep although we were never provided the exact depth. We don’t know the mitotic rate either but do know it was not ulcerated. A second surgical resection with even wider margins of the site was done January 3, 2011 and everything at the site and margins was clear. A sentinal lymph node biopsy was also done at this time. 13 lymph nodes in his head and neck were removed and the first 2 nodes closest to the site showed micro metastisis – the remaining 11 nodes were clear. My husband opted for the interferon A treatment (we live in Ontario Canada and there is nothing for Stage 3 except interferon A or watch and wait). He did the month of daily interferon and 11 weeks of the 3 times weekly self injection. After much research we decided that if there was any benefit to be had from the interferon at all it would likely have been achieved during the first month of the intensive dosing. Subsequently to his last injection on June 18, 2011 he shows NED. He goes twice yearly to the melanoma clinic and twice yearly (more if needed) to the dermatologist. Prior to his second surgery and before his interferon A treatment I began doing research on melanoma and treatment. I happened upon a study done in Italy on the use of Co ensyme Q10 supplements for stage 1 and 2 melanoma patients who were getting interferon A (I think this was a study published in 2008 and the interferon A dosing regime was quite different). The study said that those patients who were taking 400 mg of the co enzyme Q10 supplement were all able to finish their treatment and had a recurrence rate of melanoma which was 27% less than the control group who did not take the supplement. And as we all know any hope is a good thing. So my husband started taking that supplement in January 2011 just before his interferon A treatment. He continues to take it at the same dose today. He also takes 4,000 IU (divided into 2 doses am and pm) of Vitamin D as again some other research showed that people with melanoma showed decreased blood serum levels of Vitamin D. Additionally he takesl an enteric coated low dose asprin (81mg) as studies have indicated some positve findings related to the use of asprin and some types of cancer (collorectol was one and his father died of that in 1983). I see most recently that asprin may help to protect post menopausal women from melanoma (and on a side note other research that I have read said that women fare 30% better having melanoma than men but there are no clear reasons for why that is but since his mother has had melanoma twice now – she is now 80 and his 28 year old neice has just been treated for a melanoma on her arm you can see why I might be interested in this research). He also takes a multi vitamin, vitamin C, zinc, fish oil and selenium as well. Not sure if anything really works but we have become almost superstitious about them and he never misses taking them.
From my research I also came across a very helpful University study about increasing the SPF of clothing through simple washing additives. Tide works but there is a product (only available in the US but I was able to get some on e-bay made by RIT) I will post the name of the article so people can read it in it’s entirety – just not sure what section of the forum I should post it on.April 5, 2013 at 8:06 pm #59062
Correction to the info in my previous post – here is the accurate information on the results of the study done in Italy in 2007 on co enzyme Q10 and melanoma:
In a non-randomized trial, 32 patients with surgically removed stage I or II melanoma received 400 mg per day of coenzyme QIO (CoQIO) for three years, while 49 age- and sex-matched patients with stage I or 11 melanoma served as controls. All patients were treated with recombinant interferon alpha-2b throughout the trial. After five years, metastases had occurred in 26.5% of patients in the control group and in 3.1% of those receiving CoQIO (p = 0.006).
Comment: CoQIO has demonstrated anti-cancer effects in animal studies and preliminary human trials. CoQIO levels have been found to be low in patients with melanoma. The results of the present study suggest that supplementation with CoQIO as an adjunct to interferon alpha-2b can decrease the rate of metastases in patients with stage I or II melanoma.
Rusciani L, et al. Recombinant interferon alpha-2b and coenzyme QIO as a postsurgical adjuvant therapy for melanoma: a 3-year trial with recombinant interferon-alpha and 5-year follow-up. Melanoma Res. 2007;17;177-183
Sorry about that – it’s been a while since i looked at that article.April 5, 2013 at 8:13 pm #59063
I thought since I had posted here I would post the info about the RIT Sunguard for improving the SPF of cotton clothing;
Below are the products used to make the fabrics more protective (no effect though on nylon and polyester). All products worked fine especially the more the clothes are washed with them but to achieve the fastest results use the SunGuard product which is formulated to raise the protectiveness against the suns’ UV light.
Household Laundry Products
Amount Used Per Treatment
A: powdered (g) 125 – TIDE
B: liquid (ml) 130 – WHISK
C: brightener (g) One package (28.4) – RIT
UV-absorber (g) One package (28.4) SUNGUARD
University of Nebraska – Lincoln
DigitalCommons@University of Nebraska – Lincoln
Faculty Publications – Textiles, Clothing and Design Textiles, Clothing and Design, Department of
Improving Knit Fabric UPF Using
Consumer Laundry Products: A
Comparison of Results Using Two
InstrumentsApril 5, 2013 at 9:15 pm #59064TreeFrogParticipant
Congratulations on your husband being NED!
That study has been mentioned occasionally on this forum, but I haven’t seen it discussed for a couple of years. I was diagnosed with Stage 1a in 2010, and I did a lot of research and came across that study myself. Although it was only a preliminary study, the results were compelling enough that I have been taking the daily dose of CoQ10 ever since (and no recurrences, although I am statistically very unlikely to have a recurrence anyway).
It’s not something I could tell another person to do (we don’t know for sure about side effects of many of these supplements), but it felt like the right thing for me. Thanks for introducing it for discussion.
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