New to the Forum , not new to my melanoma!

  • 7 replies
  • 77 subscribers
  • 1040 views

my melanoma was diagnosed from a mole on my lower right back  last year after biopsy . Subsequent surgery followed with sentinel lymph node surgery during which the surgeon identified  cancer not in my lymph node but on my  chest wall which was operated on at a later stage. Throughout all of this process I felt confident with everybody who was dealing with me and the treatment I received. 

I am not long divorced , I live alone and have two grown offspring living with their own families and as a family we still function as best we can  at long distance, I shared my situation with the family group and talked about it freely and I consider myself very lucky to have all that love and compassion . Outside my family group I really didn't discuss my situation with anyone other than my GP and Oncologist and of course  the amazing MacMillan nurses , but none of these conversations dealt in any depth with my emotions or  my "onwards and upwards" approach.

Treatment continued with immunotherapy which I found manageable . I should mention that between  the surgery and the the immunotherapy commencing I was diagnosed and treated for AF ,a heart anomaly which is being dealt with by drugs also ,during the therapy I had a major gall stone event after which the surgeon refrained from surgery due to ongoing "complicating factors.

Not my best year so far but ...more to come. Five months into the therapy  treatment of a side effect  thyroid imbalance went awry and my hormone system broke down. The drugs dealing with the thyroid imbalance suppressed my adrenal gland output  effectively shutting it down and so things got bad.I basically confused the symptoms of my adrenaline shortage with the side effects of the therapy . This was a serious mistake although I did share what was happening with the family and eventually my GP . The fact is I did not share it enough,describing my inability to get any food down my throat at all ,as a wee problem solved by drinking Japanese ITSU chicken stock and herbs. I was lucky to survive and that was by the awesome response of the MacMillan Nurses and hospital staff who upon sight of me had me in A&E  and admitted to hospital for a few days. Apparently I'll be on Steroids and cortisol for the rest of my days

Immunotherapy over. Scans during hospitalisation showed the tumor  growing and  apparently moved to the lymph nodes.

That's where I'm at now. I'm advised the way forward is targeted treatment with pills and I'm midway through the week the oncologist suggested I take to consider this option. I've applied and been accepted for BUPA therapy via MacMillan program.

That's where I'm at now and I think perhaps I finally need to talk to other people who know what it's like to be in this situation . From the outset I decided to go with whatever the specialists recommended and that remains my intention but I've realised I need to share this and learn from others in a similar predicament if I'm going to get the best of it. 

  • Hello Elbibi

    Welcome to the online Community.

    I am sorry to hear of your journey with melanoma.

    I hope you do not mind me replying as I had a different type of cancer to you, but by doing so it will bump your post and hopefully you will get a response from someone who is going through a similar experience.

    During my own cancer journey last year I did find it helpful to share with others and it did really help. I hope that you will have a similar experience. 

    I wish you the best of luck with your treatments and hopefully someone will now see your post and respond. In the meantime if you need anything else, please just ask.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hello Elbibi.  I'm sorry to hear of your diagnosis.  It takes time to come to terms with things like this.  I had a mole removed about 5 years ago which turned out to be cancerous. And then last September, I was diagnosed with Advanced Metastatic Melanoma which was inoperable due to the spread.  My reason for responding to your post is that I was given targeted therapy (Braftovi and Mektovi - used when you are BRAF positive) which I take as tablets every day.  I had an amazing response to those drugs and although I have had a lot of side effects - some serious and some not so much - my scans show that all my tumours have either shrunk or stopped growing.  I just wanted to reassure you that the targeted therapies can work and right now I am feeling well and just trying to get on with my life.  I do hope you also have a positive response to your proposed treatment. All my very best wishes.

  • Thanks for your reply and apologies for the lateness of mine.It is Braftovi and Mektovi for me so it is very reassuring to learn of your positive response to them and long may that continue. Do you continue to take the pills ad infinitum?

  • Hello Elbibi  I hope you are continuing to feel positive.  In answer to your question, as far as I understand I will continue taking Braftovi and Mektovi until either they stop working or I cannot tolerate the side effects.  As I said although I have had an interesting variety of side effects, nearly all of them went away.  I still have peripheral neuropathy which affects my feet and lower legs, but it is not painful just rather strange. I have had no other treatment than what i call my Tovis.  I think of them as a wonder drug and am very very grateful for their development.  I have been taking them for almost exactly a year now and to look at me you would never guess that I have Stage 4 cancer or that I am on daily cancer medication. (I am touching wood as I type this Grinning ) If you have anything you want to ask me then please do.  I will be more than happy to help.  All my best wishes

  • Thanks , Was not expecting that ,I've had a 10 day break since my immunotherapy Addisons crisis ,  I pick up my Tovis today and will start tomorrow. It's great to share  your experience and long may it continue!

  • Please let me know how you get on,  All my best wishes