I have malignant melanoma stage 3

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I  would be interested to hear how others have coped with this diagnosis.

I have had the main tumor removed which metastised to  Parotid Gland and 3 lymph nodes in neck. I have been told mine is high risk of returning. I was wondering how long is usual return rate  if anyone can answer such a question. I worry about it i am not young.

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  • Posted

    Hi Celestine,

    Sorry to hear about your MM diagnosis and having to go through various treatments!

    I was diagnosed with ALM - Acral Lentiginous Melanoma on the sole of my foot in May 2015 and despite it being 'only' stage T0 had to undergo one biopsy and 3 operations resulting in impaired mobility for well over 6 months.  So I can't really talk about stage 3, but I can definitely empathise.  Did you know there is a great Facebook Group called Melanomamates which is fantastic - you have just missed the patient conference which was held in the middle of June in Solihull, but you can find their website melanoma patient conference.  I am not posting links in here as I think the moderator will remove them... Hope this helps?  All the best.  Maja

     

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  • Posted

    Hi Celestine,

    My mom (at age 61) had exactly melanoma stage 3 metastasis on parotid gland and 2 affected lymphnodes. The doctor removed parotid gland, debulked tumor in neck. And removed lymphnodes. What exactly do you want to know? Did you do any chemo?

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    • Posted

      Hi Lidia

      Thanks for your reply. How is your Mom now did MM ever return.

      I did not do any adjuvant treatment as i am 67 and Dr said it would be to much for me. I took the wait and see course. I would really like to know if possile how long it would take if it choose to return.It is 6 months since my operation now. If you have anymore knowledge of MM i would love to hear. Keep well and i hope Mom is doing well.

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    • Posted

      Dear Celestine,

      My mom had to have another debulking operation on her neck after 8 months of first surgery, after noticing an enlarged lymphnode behind her ear. At that time the surgeon told my dad that because of the location ( near jugular vein) they removed what they could. After 3 months she did a PET scan that revealed small metastasis in lung and liver. Because of the nature of her melanoma after doing the genetic mutation study , it was determined she was a possible candidate for the NEMO study and took 6 months of this trial medicine. We don't know if she had a placebo or the actual chemo, her pet scan showed a small reduction on tumors but unfortunately that was short lived, she passed away on Christmas that year at the age of 62, please don't loose hope, her melanoma was caught late, they took the wait and see approach on her mole and after it started bleeding and itching they finally took a byopsy and she was already stage 3b. This happened in 2014 modern Italy! If the dermatologist would have biopsied right away she could have been spared I think! Celestine I will pray for you, ask your doctor for trial studies like the Nemo program, the chemo was light and the only thing she complained of was an itchy skin and occasional nausea, no hair loss. Her melanoma was on right side of neck near her ear. What about yours? What kind is it? Brac? Let me know, I have still all of her documentation and maybe can help you. What's your story?

      Please know that her story is not yours, meaning that you could have a longer remission or the chance the b*****d may never come back!!! Let me know!

      With much love and admiration,

      Lidia

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    • Posted

      Hi  Lidia

      First please accept my symphaties on your Mom;s death. I have to  say things should have started for her alot earlier, the result now may have been so different for her. My own story started July 2016 while talking to my GP about a different matter. She said to me i would like you to visit a dermatologist to check the  lump on your forehead. To tell you the truth i had taken no notice of it as i always had a fringe, anyway she made the appointment  for me and i was seen in three weeks. The dermatologist a lovely man looked at it with his special light, he then said undress and examined every part of my  body. He said i would like to do a biopsy for you.I had that done 2 weeks later and same week he  called me to say biopsy was malignant  melanoma. I  was stunned he said i am going on holidays next week so would like to see you tomorrow so i can get things started.  I then got an appointment with a plastic surgeon as the hole left after removal would need a transplant to cover it. The surgeon  then sent me for a CT scan and was not pleased with  the result as it showed something in the parotid gland. I had a biopsy of that but it failed to remove enough material , a second biopsy was ordered and a consultant did it this time. The result  was melona. A Pet scan was done then and after all that my surgeon said he would do forehead, parotid gland and lymph nodes in neck.The surgeon took a slice of skin from my thigh to cover hole in forehead. All melanoma removed went to pathology and it was malignant in 3 lymph nodes 35 were removed. I was not lucky with  the op. as nerve was damaged doing parotid gland this has left me with facial palsy. My eye is the biggest nuuisance as at first it would not blink or close. The operation was 14th December 2016 and i must say  the eye is improving but not 100% yet. I had a scan in April which showed no recurrence of melanoma but there was a clot found near my lung. I am on Innohep injection for that daily. I am going for another scan Tuesday 10th and of course i worry about this.I will let you know how i get on a week later. I want to apologise for my typing and punctuation spelling etc. I can only see well with 1 eye. Thanks for listening to me go on. I look forward to your news. As you can see things happened alot faster for me (Good  old Ireland)  Talk soon Lydia and prayers are good.

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    • Posted

      My mom was left with facial palsy too, whenever they touch your neck there is always a possibility of severing a nerve, she had hoped till the end to be able to beat it but unfortunately it wasn't possible. Please let me know what the Ct scan results are. I will be thinking and praying for you! Celestine beat that Beast for you and for my mom too 🙏🏻??!!

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    • Posted

      Hi Lidia I saw a hematologist yesterday regarding the DVT. He was able to give me the scan results from 10/7/2017 scan, he said no bad news  on scan, boy was i happy for now. I am aware 1st 2 years are the worst if it wants to recur. I have a visit next Tuesday with my Op. team. I am keeping the flag flying  for your Mum. Did  she  get any DVT  after her op. seems it goes with  the territory. My eye gives me the most trouble have to instill drops hourly and use lubrication morning and evening. 7 months now and i hate it.
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