› Forums › Cutaneous Melanoma Community › Nodular melanoma stage 3b – newly diagnised
- This topic has 15 replies, 10 voices, and was last updated 6 years, 3 months ago by
kannevans01.
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- October 1, 2018 at 12:34 am
Hello everyone
This is my first post. To summarize mid may 2018 had serious itch in the middle of my bck. No matter how u tried could not reach. Had my husband scratch for me and he thought just a blood blister and he suggested I go to dr as it dis not go away by end of June. My mom, retired nurse finally saw it and insisted I go to dr. I did dr acid not too worried but did shave biopsy. 4 days ktwr the nightmare begins.
Was lucky to get apt with msk within 6 days and scheduled for surgery on 8/9/18. Had 3 nodes removed and large section on back removed. Staged 3b and started opdivo on Sept 11 and have completed 2 treatment of 26. So far only symptoms are inability to Fall asleep and fatigue.
I am looking to connect with others going through the same things as I am trying to keep things light for my family.
Sending hugs to the group.
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- October 1, 2018 at 1:36 am
Welcome Susan! I am new to this group, too, having just had my WLE done on Thursday. Mine was on the bottom of my foot. I am waiting on staging right now. (this coming week) There seem to be many helpful people in this group, and I'm sure you will find the support you are looking for.
Hang in there!
Hang in there
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- October 1, 2018 at 2:19 am
Hi Susan,
I am new to the group too. I was diagnosed just over a month ago and I am waiting for a Sentinel Biopsy and Wider Excision. It seems to be taking forever and waiting for an appointment is killing me. It doesn't really feel real I haven't seen a doctor yet (other than the nameless one who did the original biopsy) and I was given the news by a cancer nurse. She was very nice, but they had no paper work to give me to read up on anything and of course I hit the internet to try to get some answers. I wish I hadn't as it has scared the life out of me. I just want it over and done with so I know what I am fully dealing with.
Hang in there and you Aramat – we need to stick together.
Kelly x
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- October 1, 2018 at 1:18 pm
Susan, I am sorry that you are dealing with the melanoma now. My nodular melanoma journey started in 2008. I probably had a rougher experience than you will, since I was on the cusp of the immunotherapy treatments. My nodular was 4.1mm deep. After trying to eradicate the cancer by surgery, I was so fortunate to be accepted into the very first clinical trial of ipilumimab / nivolumimab at Yale. First I had to have a craniotomy and a few Gamma Knifes later to the brain. Quite a few of my organs were inflicted with the melanoma. After eight months I was declared NED, six years back now. Nodular is the same as any other type of melanoma except for the fact that instead of growing along your skin it burrows underneath it. The journey to remove the melanoma will take some time but there are some great immunotherapy treatments available now. You can and you will eradicate the melanoma from your body. Feel free to send me a message if you like.
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- October 3, 2018 at 1:33 pm
Not sure if we can upload photos on this site, if we can let me know. Otherwise, it presented like a blood blister, a little scaly and in the middle of my back so no matter which way I tried I could not reach it. It was raised and like the size of a pencil eraser. I am super glad that it itched because without the itch I truly would not have noticed it and who knows what would have happened. So thankful!
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- October 16, 2018 at 9:43 pm
Hello, I am new to this as well. I had a mole on the ball of my foot since birth. Aropund March 2018 I noticed a lump under the mole, it turning different colors of brown as well as fluid coming out. I originally though it was a blister. I am staged 3b and am currently waiting on a date to start Opdivo. They originally wanted to amputate my second toe and didn't tell me they didnt have to until 10 minutes beofre surgery. I know this is a tough situation but this group gives me some hope.
Kris
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- October 1, 2018 at 1:31 pm
Hi Susan, and welcome to the clubhouse! I, too, have just started Opdivo and am due for my third treatment this month. Aside from a mild rash, my only symptom is various levels of fatigue. I wake up feeling tired and achy in the morning, then slowly feel more energetic and by the evening I have almost too much energy. One thing that helps me get to sleep is a viusalization/breathing excersise, it's kind of like counting sheep. With each breath in, I visualize a wave of whiteness entering my body and filling all of my cells (this represents my immune system going to work). With each breath in, I visualize a wave of blackness leaving my body (good-bye nasty old melanoma!). White in, black out, white in, black out, etc. I've been sleeping pretty well, except when I need to get up to go to the bathroom! Anyway, hope this helps.
Good luck, and give your mom a hug for insisting you have it looked at.
-Rich
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- October 1, 2018 at 6:42 pm
Thanks for the warm welcome! I think it will really help me to talk to friends that are going through similiar things. You are correct, my surgical oncologist told me hug my mom too! I likely would not have gone to doctors. My husband had told me to go a few weeks earlier and I scoffed at him and said I simply did not have the time. Can you imagine?!!!
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- October 1, 2018 at 2:26 pm
My husband started out at Stage III in Jan. 2008 with a 10.5 mm lesion on the back of his head. He had his WLE and SLN on Feb. 14, 2008. SLN came back clear. His surgery also included a skin graft. He had 3 more surgeries 2 on the head and 1 in the neck area before he became Stage IV in Oct. 2010. March of 2011 he started a Clinical Trial of Ipi (10 mg/kg) and GMCSF (daily injections for 14 days and then 7 days off). He did the first four treatments of Ipi (Yervoy) at 3 week intervals and then went into a maintenance dosage of a treatment every 12 weeks until Dec. 2013. When he became Stage IV he had an unresectable at the Cervical spine C1- C2 and also in his liver and lungs.
He became NED in July 2012 and has remained NED for over 6 years now.
It started out as a mole on the back of his head which was irregular in borders and which became black. It was under his longish dark brown hair.
Judy (loving wife of Gene)
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- October 1, 2018 at 11:52 pm
I started off as stage IIIB also in January 2014. I remember that itch you mentioned. Mine was on my left side and itched all day long. Back then protocol was a chemo called Interferon and when it's all said and done, if you finish, the plan calls for 152 doses and it was very rough. After the Interferon, within a few months my melanoma had spread to my right lung, which then meant I was stage IVB. I started Opdivo back in April 2016. I was on the every 2 week dose for over 2 years and a few months back started on the once a month dosing. Fatigue is really about the only side effect I have experienced on either dose. So, sorry to hear about your new diagnosis but now is a much better time with better meds and higher survival rates.
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- October 4, 2018 at 2:02 pm
I too had a nodular melanoma that was discovered back in June. It was on the inside of my elbow and looked like a small flesh colored pea. The dermatologist thought it might be basel cell and did a shave biopsy. It came back melignant.
I had a wide excision and a SLNB that was negative. The total depth was 9mm and it had a very high mitotic rate. No ulceration so 2B.
Decided to join a clinical trial with opdivo, After my first treatment I was tired and did not have a very good appitite. Before my second treatment my blood work came back showing my thyroid hormones were out of wack (high TSH and high T4) I had a choice to quit the trial or have irreversible permanent thyroid damage. I choose to quit.
I have now on prednisone hoping my thryroid recovers. Should know in a couple weeks.
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Tagged: cutaneous melanoma
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