Is there anyone out there that has Metastatic Melanoma?

Was diagnosed in May this year with terminal metastatic melanoma  in my liver and stomach lining, I was accepted for a trial drug called vemurafenib in Glasgow, after my first scan the cancer had reduced now just coming up to my next 2 month scan is anyone else going through the same as me. I am so scared of the results, don't feel I want to ask what is the time scale of my life on this drug. Is anyone else in a similar situation. Any help or advise would be greatly appreciated.

  • Hi Lesley,

    Welcome to the Online Community. I'm so sorry to hear of your diagnosis. It's good that the trial drug reduced the cancer, but it's understandable that waiting for your latest scan results is a scary time.

    I'm sorry to see that you haven't had any replies so far. Perhaps there isn't anyone in this particular group with the same diagnosis as you. However, there are definitely others who understand what it's like to have a terminal diagnosis, so I hope that you get some replies soon.

    In the meantime, you may also find it helpful to join some relevant cancer type groups and post in those as well. For example, we have a melanoma group and a secondary liver cancer group.

    You can also give our team a call on the free Macmillan Support Line (0808 808 0000, Mon-Fri, 9am-8pm) - our experts can answer questions on medical, practical and financial issues, or just be there to listen if you need to talk.

    I hope this is helpful.

    Priscilla

  • Hi Yes I was diagnosed in July with MM but couldn't go on Trial ( long story!) but my oncologist applied direct to another drug company to ask if they would supply the drug Dabrafenib under "special circumstances" and they agreed. I have been on drug for 12 weeks and go for scans at the Beatson Glasgow before my next visit to see if the drug is still working. There was a small reduction in one of the tumours last time (at 8 weeks) but also there was the start of a new melanoma, so a mixed result. Unlike you, I ask ALL the questions and want to know as much as possible about what is and will happen as I feel if I'm fully informed, I can cope better. I don't feel scared when I go for results etc and I just try to enjoy each day as it comes without thinking too far ahead. I have always been a positive thinker and still am. The thing that really concerns me is the effect this is having on my family and I can't do anything about that. Please stay positive and let me know how you are doing. X

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi, I was glad to hear from someone who has the same as myself (that's sounds awful) but it helps to know I am not alone.  I went for my scan on Friday so just have to wait now for the results, due at the Beatson on Wednesday.  This is my second scan been on vermurafenib for 4 cycles now (16 weeks) there was a 25% reduction the last time so now hoping for a small reduction each time I go seemingly that is best.  I like you worry about my family I have 2 daughters age 30 and 26 one married one single and I keep playing over and over in my mind the things I will miss (nothing like beating yourself up about it) I like you have always been a positive person but this has just floored me.  Its good you are positive and you have prob been told that these drugs have been such a breakthrough for melanoma we just have to hope they work for a long time with us.  Have you had any side effects, I have had the usual aches and pains that were really bad to start with but seem to have eased off, hair def thinning its upsetting in the morning when you look at the pillow my nurse says some people don't loose all their hair it just thins fingers crossed, its these things that you just take for granted when you are healthy .Please keep in touch x

  • Hi Lesley I know what you mean about "beating yourself up" about the things you will miss, I do the same and have tried not to think about it but it doesn't work. This is only my granddaughter 's second Christmas and she doesn't really know what's going on yet but the next few years will be fantastic. I have 2 'children, a son of 40 ( not long married) and a daughter of 37 married 12 years with a beautiful daughter who's just over a year and a half. They are both very supportive as are their spouses but I can see in their eyes how hard this is. As you say, we can just hope the drugs work for as long as possible. I too have had a few side effects. Joint pains are the worst, I think. I also have a rash under the skin that is very itchy, I was quite sick to start with but thankfully it has settled down. This week I have noticed my hair is thinning quite a bit and it is worrying me as its not very thick to start with. I was at Beatson this week and oncologist has ordered an urgent MRI , which is a real worry as I am due to get the scans done before my next 4 week visit anyway but she wants this one before then. Please let me know when your results are through, my fingers are crossed! Do you find this time of year particularly hard? I do. I want to make this Christmas really special but don't quite know yet how to do that. Any suggestions? Good luck Annette (anndanv)

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette got my results yesterday and the cancer has shrunk a bit more Dr Lindsay seems pleased he also said that they keep me on the tablets until the cancer starts growing back to 20% so hopefully that will be a while, you have to be happy you are being given more time but it is so hard every two months going for the dreaded scan then waiting to hear the results. I have had very little joint pains this cycle so hopefully the longer you are on the tablets the easier it will be for you. I too have the rash and sometimes itch really badly it's funny how the side effects seem to change from month to month. Regarding making Xmas special I am the same as you, you don't know if this is your last Xmas so you want to make a special effort but the way I look at it is it will be special anyway as you will have your family around you and we don't really need anything else and I am sure your family feel the same. Keep in touch and let me know how things are going. Lesley
  • Hi Lesley So very pleased there is a further reduction. I had a full spinal MRI plus a brain scan yesterday. My next scans for end of 2nd cycle (8 weeks on drug) should be in the next, so my oncologist has the results for my next visit on 12 Dec. I don't know if I will get any results before from recent scans before my next appointment or if they will just wait until then and let me know at the same time. As you say, it's not so good when you are waiting for results. If you attend the Beatson too, does that mean you live in the central belt also? It takes me about 15 minutes to get there, if it is not peak time? I had a home visit today from a nurse from local Marie Curie Hospice and although she was very nice, it kind of brings it home to me, I will need her at some stage. Please keep in touch, Love Annette xxx

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette, how have you been keeping. I live in Aberdeen which is about 2.30hours to Glasgow we have been in Glasgow for the last 3 weeks, one week for scan then results then last Friday for dermatology and eye exam do you need to do all these tests too.i know they need to keep a check on you and I am grateful for the time these tablets are giving me but it is a lot of travelling, we usually go down the night before and stay at the pond hotel as the appointments are usually first thing. I have not been in touch with the Macmillan nurse though Elaine the nurse that looks after me at the Beatson said I should cause it is sometimes good to speak to them, I am very apprehensive as what do I actually speak about that it's unfair and I'm only 57 and should be looking forward to time with my husband and eventually grandchildren that I have waited so long for ! why are you going to a Marie curie nurse instead of Macmillan is there a difference. It is a long time for you to wait till 12th dec for your results I will keep my fingers crossed that you get a good result keep in touch Lesley x
  • Hi Lealey, I have sent you a "private message" but had a lot of bother with the screen jumping, so I will finish off here! I'm not sure about the difference between McMillan Nurses and Marie Curie Nurses but I'd guess that the McM's visit and help people at home, I don't know if they work from a Hospice but I think maybe not. Marie Curie nurses work from the Hospice but also can visit you at home, which I didn't realise. It was my GP who suggested he put me in contact with a Marie Curie nurse from the local (10 minutes by car away) hospice and she came to the house to see me. I know what you men about not knowing what to say, I fealt the same but she was very nice and just asked questions about what me and my families wishes were etc. now the initial contact has been made, I will only see here every now and again until I actually need her services, which I hope will be a long time away yet! I find this website quite hard to follow as there are so many posts each day that if you can't manage on it for a day or two, you can easily miss a message meant for you, like the one you posted! I found it purely by chance! Please let me know once you have had your results and what the outcome is. Take care, Annette x

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!