Melanoma metastases suprise!

FormerMember
FormerMember
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Hi.

3yrs ago I had a small atypical skin lesion removed and was shocked to be told 8wks later that It was a stage 2b Malignant Melanoma.

I had a WLE and SLNB and was reassured that 3mth Dermatology clinic appts was all the surveillance needed despite having BC 3 years previously, ( unrelated ).

I diligently checked my skin / moles and lymph nodes for any recurrence.

In February I noticed a small subcutaneous lump ? Boil ? Haematoma, ( tried spin class recently )  on my inner thigh not in  / near lymph nodes.

Was due to attend clinic in a few weeks and as there was no mole or surface lesion decided to wait to see if it resolved.

FF Corona strikes so rang clinic in advance as still not gone. I was advised to contact my GP as telephone consultations were planned due to redeployment of staff and resources.

Thankfully I work in another hospital and discussed my concerns with a consultant colleague who arranged an ultrasound and biopsy.

The results indicated a Metastatic melanoma!

CT scan also showed a ?abnormality in the Jejenun which correlated with indigestion symptoms which I went to the GP in Jan for.

Appart from being a little anaemic was given lansoprazole and referred for an Endoscopy  which was normal.

The endoscopist arranged for an abdominal ultrasound and colonoscopy both tests were cancelled due to covid-19 service priority.

FF Tumour excised and PET scan performed.

10cm Jejunum tumour, small liver lesion and several small subcutanious mets.

Gastro surgeons declined surgery due to Covid risk.

Advised if symptoms got worse then to go to A&E immediately.

Finally Oncologist decided that although incurable I might respond to Dual immunotherapy treatment with Ipilimumab and Nivolumab.

1st cycle completed with tolerable side effects.

But needed a blood transfusion, 3units yesterday.

Second treatment Wednesday.

Keeping everything crossed x

  • Hi 

    It certainly sounds like you've been through the mill lately. That said you also sound strong and on top of it, plus you are getting treatment to hopefully get it under control.

    I've had melanoma for the last three years and various operations, drugs & treatments including Ippi/Nivo transfusion last November.  Unfortunately my body refused to accept the drug. I had some severe complications after that one transfusion & I cannot continue that treatment.

    However I can tell you that in my case one transfusion made a massive difference to my tumors - you can read about it if you click my name. There are also several others here on this forum that have experienced similar great results from these "miracle drugs" .  Your next treatment is tomorrow and I'll be thinking of you.

    Take care

    J

    Don't wait for your ship to come in, swim out and find it!

  • Hi , I will keep everything crossed for you for Wednesday as well. I’m a metastatic melanoma patient too, in July it will be 5 years for me. I haven’t had the dual immunotherapy, I have had the single Pembrolizumab but I’m on a break at the moment. 

    I hope you’re feeling ok after your very busy whirlwind of a few weeks, it sounds like you feel well supported by your hospital team, it sounds like you’re in the NHS yourself and appreciate all the problems taking CV19 into account.

    Take care KT

  • I will be thinking of you. I have had four treatments with the duo. I had some side effects like a slight itchy rash ,vitiligo on my arms and chest which hasn’t gone away and joint ache. All side effects were manageable and two years on I am on my 24 th treatment of just Nivolumab every four weeks. My tumours ( see my profile ) have shrank and I feel well. There is always a time of anxiety,especially around scan result time ,which is in my case every 3 months. This is normal and 8 try to keep busy during that time. 

    Look after yourself and treat yourself to something nice. You will be in my thoughts on Wednesday 

    Lgrgdg90
  • I meant to say I needed a blood transfusion and extra iron at the beginning of the treatment 

    Lgrgdg90
  • FormerMember
    FormerMember in reply to KTatHome

    Ty x