› Forums › General Melanoma Community › 3 positive nodes
- This topic has 30 replies, 8 voices, and was last updated 12 years, 7 months ago by
Jim M..
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- September 27, 2011 at 7:50 pm
Hi there,
My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.
We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.
My husband is a firm believer in keeping his body and his mind strong….putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.
Hi there,
My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.
We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.
My husband is a firm believer in keeping his body and his mind strong….putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.
I would appreciate hearing from all you survivors who have had positive nodes and what personal choices you made for yourself. I know everyone responds different and melanoma grows differently in all of us.
Scared and Confused, even though I would never let my husband know that. He has been amazing through all of this.
Thank you,
Jewel
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- September 27, 2011 at 8:57 pm
hello Jewel,
my mum had a 1,9mm/iv clarks/ulcerated tumor on her back, we did WLE and SLNB at both armpits, at the one it came back positive with micromet and then she had precautionary axillary disection with negative results, after these the ongologist mentioned that she had to take interferon.Due to the mane bad sides effects interferon and the minimun effect of population she decided not to do it.Just wait and see method.
every day i m praying to God for her an for all of you
every day i m thinking if it comes back what are we going to do
every day.
it is a hard choice that your husband has to take and never look back and say "what i have or havent done"
best wishes
DiRena
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- September 28, 2011 at 12:07 am
Hi DiRena,
I'm very sorry to hear about your mum, she is very lucky to have such a caring daughter.
A very good friend of mine (had) Stage 3 Thyroid Cancer. Today she is a very healthy lady…the one gift she has given me through all this is to LIVE FOR TODAY and enjoy every minute.
I wish you and your mum the best!!
Jewel
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- September 28, 2011 at 12:07 am
Hi DiRena,
I'm very sorry to hear about your mum, she is very lucky to have such a caring daughter.
A very good friend of mine (had) Stage 3 Thyroid Cancer. Today she is a very healthy lady…the one gift she has given me through all this is to LIVE FOR TODAY and enjoy every minute.
I wish you and your mum the best!!
Jewel
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- September 27, 2011 at 8:57 pm
hello Jewel,
my mum had a 1,9mm/iv clarks/ulcerated tumor on her back, we did WLE and SLNB at both armpits, at the one it came back positive with micromet and then she had precautionary axillary disection with negative results, after these the ongologist mentioned that she had to take interferon.Due to the mane bad sides effects interferon and the minimun effect of population she decided not to do it.Just wait and see method.
every day i m praying to God for her an for all of you
every day i m thinking if it comes back what are we going to do
every day.
it is a hard choice that your husband has to take and never look back and say "what i have or havent done"
best wishes
DiRena
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- September 27, 2011 at 9:27 pm
Hi Jewel, I had 14 positive nodes and opted for "neoadjuvant" biochemotherapy to try to lower my high odds that my disease would progress to Stage IV. The "wait and see" approach after surgery would've driven me stark, raving mad. No regrets, 8 years later I'm healthy and NED. Best wishes to you and your husband.
Rich
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- September 28, 2011 at 12:12 am
Hi Rich,
Thanks for your reply…to be honest I do not know much about Biochemo…but it sure sounds like a rough treatment.
I have heard of a few other people who have had great results with it. Congratulations on 8 years NED…that is wonderful.
Jewel
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- September 28, 2011 at 12:12 am
Hi Rich,
Thanks for your reply…to be honest I do not know much about Biochemo…but it sure sounds like a rough treatment.
I have heard of a few other people who have had great results with it. Congratulations on 8 years NED…that is wonderful.
Jewel
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- September 27, 2011 at 9:27 pm
Hi Jewel, I had 14 positive nodes and opted for "neoadjuvant" biochemotherapy to try to lower my high odds that my disease would progress to Stage IV. The "wait and see" approach after surgery would've driven me stark, raving mad. No regrets, 8 years later I'm healthy and NED. Best wishes to you and your husband.
Rich
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- September 27, 2011 at 10:12 pm
Hi Jewel –
Sorry to have to 'meet' you here and about your husband. I (along with several others on the board) am treated at Sloan. They were actually the place I got my 3rd opinion. They don't recommend interferon. I was trying to get in the Ipi trial when they found a dozen spots on my lungs. In March I had those biopsied which showed Melanoma.
After that I tried to get in the BRAF trial but by the time I got the tissue sampled and had an updaed CT scan – all the spots in my lungs were gone! So we've opted for a watch and wait. If my body seems to be taking care of things – why mess with it? The drugs may be worse for it?
I see Dr Dickson there. He's great. I'm finally back to seeing him every 3 months for check ups vs. every 4 to 6 weeks. So far things seem to be ok.
Oh and my primary was on my back. Diagnosed Oct 2010. It was 4.5mm w/ ulceration. 1 positive node involved. All others were clear.
Feel free to reach out if you have ?'s about Sloan. Good luck. And the decision on what treatment to do is different for everyone.
Erin
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- September 27, 2011 at 10:12 pm
Hi Jewel –
Sorry to have to 'meet' you here and about your husband. I (along with several others on the board) am treated at Sloan. They were actually the place I got my 3rd opinion. They don't recommend interferon. I was trying to get in the Ipi trial when they found a dozen spots on my lungs. In March I had those biopsied which showed Melanoma.
After that I tried to get in the BRAF trial but by the time I got the tissue sampled and had an updaed CT scan – all the spots in my lungs were gone! So we've opted for a watch and wait. If my body seems to be taking care of things – why mess with it? The drugs may be worse for it?
I see Dr Dickson there. He's great. I'm finally back to seeing him every 3 months for check ups vs. every 4 to 6 weeks. So far things seem to be ok.
Oh and my primary was on my back. Diagnosed Oct 2010. It was 4.5mm w/ ulceration. 1 positive node involved. All others were clear.
Feel free to reach out if you have ?'s about Sloan. Good luck. And the decision on what treatment to do is different for everyone.
Erin
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- September 28, 2011 at 12:23 am
Hi Erin,
First off I would like to say how great it is to hear that the spots on your lungs are gone.
For almost a year now my husband had chose to watch and wait ….then we had the recurrance on his calf and also his lymphnodes.
My husband was diagnosed in Nov 2010 3.6mm w/ulceration on lower left calf.
Since you have been with Sloan what kind of Scans do they do? I see that some places only do them if you show symptoms.
I wish you nothing but the best and wish you continued clear scans
Jewel
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- September 28, 2011 at 12:42 am
Jewel –
Thanks for the note. My onc at sloan prefers to do CT scans every 3 months. They will look at doing a PET or biopsy if something comes up on those scans. They feel the CT gives a better picture of smaller things. When I was first diagnosed I was at UNC – Chapel Hill.
Do you know which doc you'll see there yet?
Erin
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- September 28, 2011 at 12:42 am
Jewel –
Thanks for the note. My onc at sloan prefers to do CT scans every 3 months. They will look at doing a PET or biopsy if something comes up on those scans. They feel the CT gives a better picture of smaller things. When I was first diagnosed I was at UNC – Chapel Hill.
Do you know which doc you'll see there yet?
Erin
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- September 28, 2011 at 12:23 am
Hi Erin,
First off I would like to say how great it is to hear that the spots on your lungs are gone.
For almost a year now my husband had chose to watch and wait ….then we had the recurrance on his calf and also his lymphnodes.
My husband was diagnosed in Nov 2010 3.6mm w/ulceration on lower left calf.
Since you have been with Sloan what kind of Scans do they do? I see that some places only do them if you show symptoms.
I wish you nothing but the best and wish you continued clear scans
Jewel
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- September 28, 2011 at 1:45 am
Hi Jewel,
I am sorry that your husband and you are going through this. I had a deep nodular primary and a positive node (sentinel node). I did have a groin lymph node dissection because the sentinel node was positive but decided against further treatment. I am 6 and a half years out from surgery and haven't recurred. I am followed by an oncologist and dermatologist and probably will be indefinitely but so far so good. I was offered interferon and personally didn't think it improved my odds and was concerned about the toxicity. No two people are the same but for me what I did (no adjuvant treatment) has worked so far. I was 47 when diagnosed and am a mom but my daughter was in college at the time. I mention that because I don't know what I would have done if if I had a younger child but even in that case I wasn't impressed with the stats on interferon although I know many have done it and felt like it was beneficial. We are all individuals so no advise but wishing you and your husband all the best, Carver
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- September 28, 2011 at 1:45 am
Hi Jewel,
I am sorry that your husband and you are going through this. I had a deep nodular primary and a positive node (sentinel node). I did have a groin lymph node dissection because the sentinel node was positive but decided against further treatment. I am 6 and a half years out from surgery and haven't recurred. I am followed by an oncologist and dermatologist and probably will be indefinitely but so far so good. I was offered interferon and personally didn't think it improved my odds and was concerned about the toxicity. No two people are the same but for me what I did (no adjuvant treatment) has worked so far. I was 47 when diagnosed and am a mom but my daughter was in college at the time. I mention that because I don't know what I would have done if if I had a younger child but even in that case I wasn't impressed with the stats on interferon although I know many have done it and felt like it was beneficial. We are all individuals so no advise but wishing you and your husband all the best, Carver
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- September 28, 2011 at 11:25 am
Jewel, I would just like to agree with your husband about the importance of keeping one's mind and body strong.
I feel that it is especially important to keep as healthy as possible. Good nutrition and a low stress lifestyle will certainly help. This is because melanoma is sensitive to the actions of the immune system. As Erin has mentioned in this thread, she is showing NED at the moment and was able to overcome lung nodules without any treatment.
However, melanoma is unpredictable in what it might do and is often able to evade the actions of the immune to keep it at bay. Therefore, your husband and his oncologist will need to be vigilant.
Best wishes
Frank from Australia
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- September 28, 2011 at 11:25 am
Jewel, I would just like to agree with your husband about the importance of keeping one's mind and body strong.
I feel that it is especially important to keep as healthy as possible. Good nutrition and a low stress lifestyle will certainly help. This is because melanoma is sensitive to the actions of the immune system. As Erin has mentioned in this thread, she is showing NED at the moment and was able to overcome lung nodules without any treatment.
However, melanoma is unpredictable in what it might do and is often able to evade the actions of the immune to keep it at bay. Therefore, your husband and his oncologist will need to be vigilant.
Best wishes
Frank from Australia
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- September 28, 2011 at 1:45 pm
Hi Jewel,
I`m sorry we have to meet under such circumstances. I agree with others that each body is unique and may respond to any medicine differently. From my experience with a dear friend of mine, I can only agree with your husbands choice. My friend was diagnosed with melanoma stage 3 in 2009 and underwent several surgeries. Well, she is not as strong in mind as your husband, cuz once she was NED her worst fear was of cancer returning. Well, her Latvian oncologist adviced her to practice virotherapy, because it uses natural medicine without chimicals and at the same time it activates her immune system, strengthens her healthy cells and kills malignant ones if they appear. By using unharmful medicine, she had got rid of side-effects she had after surgeries and, plus, she doesn`t live in fear. So if your husband believes in his own body`s strength than let it be so, if not, seek for options!
good luck!
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- September 28, 2011 at 1:45 pm
Hi Jewel,
I`m sorry we have to meet under such circumstances. I agree with others that each body is unique and may respond to any medicine differently. From my experience with a dear friend of mine, I can only agree with your husbands choice. My friend was diagnosed with melanoma stage 3 in 2009 and underwent several surgeries. Well, she is not as strong in mind as your husband, cuz once she was NED her worst fear was of cancer returning. Well, her Latvian oncologist adviced her to practice virotherapy, because it uses natural medicine without chimicals and at the same time it activates her immune system, strengthens her healthy cells and kills malignant ones if they appear. By using unharmful medicine, she had got rid of side-effects she had after surgeries and, plus, she doesn`t live in fear. So if your husband believes in his own body`s strength than let it be so, if not, seek for options!
good luck!
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- September 29, 2011 at 12:38 am
Hi Jewel,
I was diagnosed stage 3C with an unknown primary. After recovering from the LND I had radiation and a clinical trial of Yervoy (which is a monoclonal human antibody) in 2008. With Yervoy my immune response was significant; at least 5 times over baseline. Check with the doctor about this possibility.
God Bless,
Jim M.
stage 3C
NED: 3 years, 10 months
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- September 29, 2011 at 12:38 am
Hi Jewel,
I was diagnosed stage 3C with an unknown primary. After recovering from the LND I had radiation and a clinical trial of Yervoy (which is a monoclonal human antibody) in 2008. With Yervoy my immune response was significant; at least 5 times over baseline. Check with the doctor about this possibility.
God Bless,
Jim M.
stage 3C
NED: 3 years, 10 months
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