Dab/Tram treatment

Hi Angela, 6 years ago I was diagnosed with metastatic melanoma, and My first treatment was Dabrafenib, it was only combined with tram if you went on a clinical trial, in which case only half of the people on the trial got both drugs the other half just received dab. I did exactly what you are doing I came here to the Macmillan site to find people who were on the drug in the hope to find someone who had been on it a long time. I found anndanv who had been on the single drug Dab for 2 years I believe, that was such a boost to me as the single drug had an average time of 9 months of working. I was not sure if there was a next treatment at that stage on the NHS, but at month 7 of my treatment, the immunotherapy drug Pembrolizumab was authorised for use and that was just in time as my next scan I needed to change to it. 

Like you Dab worked really quickly, I began to feel a lot better, the melanoma was in many pelvic and abdominal nodes, I was classed as stage 4 as my primary was occult and so many nodes were affected. At my first scan they had all shrunk by 50 %, the next scan a further reduction, the next one stable and the last one a progression to my ovary so I was moved onto Pembrolizumab. I had also been diagnosed with type 2 diabetes 6 years ago and so I will never know if the weakness and nausea I felt then was diabetes or Melanoma related. Like you I began to try and improve how much walking I could do. I was really upset when I had to change treatment as it felt like that was going to be the last treatment, and I could not tell that it had progressed until I had the scan results. 

We are all different and new treatments do come along, I can understand the struggle of how long, as my original prognosis was stated to me as less than 12 months. 6 years ago having trouble walking more than a few doors away due to weakness and breathing difficulties and 21 months after diagnosis I was no evidence of disease and going to the gym. I have had a few blips in my treatment but I am still here, I unfortunately have not remained no evidence of disease but I did not stay on immunotherapy for the full 2 years that most on the drug stay, I came off at 12 months as I had been clear for 6 months. My experience is in my profile that you can get to by clicking on my user name or reply and ask anything that you think off. You mention immunotherapy being your last option, and that’s how I felt when I started Pembro in 2016, and it might be, but for me I have been back onto Pembro and I’m on dose 56, but when I went back onto it after a gap of a year due to a recurrence, I was told that I could be rechallenged with Dab combined with Tram, or possibly change immunotherapy from Pembro to Ipilumamab. I have a scan booked for 2/9 and a face to face appointment to have the scan results and discuss a clinical trial (and probably more conventional treatment) so as I’m well I may be classed as incurable as it had been in so many places, but having been clear a couple of times and feeling well I can not put myself in that incurable mindset. I do find it hard to plan ahead but I have not given up on being clear again as the statistics says it’s happened to some. I have written a will and power of attorney though and avoid very long fixed saving accounts ! 

I hope this helps and that others on Dab and Tram reply as well, some on here will be having it as an adjuvant treatment and others may have had it and moved on to immunotherapy. 

Thanks for your reply KT. I actually looked at your profile when I was searching for information on here. 

I know it's really difficult to predict what will happen as we're all so different.  I've met my oncologist twice and she doesn't say a lot but answers the questions I ask.  She doesn't seem to be very open to complementary methods to support the cancer drugs which is a shame but I understand doctors can't support anything that hasn't been trialled and tested. I'll keep doing my research though and keep supporting the conventional treatment with my diet with the hope of the best outcome possible.

Everyone says I'm coping really well with the news but I can't see what else I could do. For years I've been competing in triathlons up to Ironman distance and for this to happen has meant a big life change........so I got myself an e-bike so I can still ride with my friends now I'm feeling a bit better   Started a bit of a bucket list so I'm going to make sure I plan to do what I can whilst I'm able to.

Keep well

Angela

Hi Angela three years ago I had melanoma in my lung,near my spine and large tumour near my kidneys.  I was put on dam tram and it worked for 7 months without progression.It completely cleared my lung melanoma and as far as I know it is still clear. I then had ipi and Nivolumab for four treatments then only Nivolumab. I am still on Nivolumab and feel generally well. I had more side effects taking the tablets than the immunotherapy.My scan results have usually shown stable or a decrease in tumour size. The tumour may actually be dead now but they want m3 to take Nivolumab indefinitely. I am happy to do so as it kind of gives me some reassurance. 

Regarding diet I try to eat well. I was told to avoid probiotics as you need a wide gut bacteria.Also avoid antibiotics if possible. I walk every day and try to get on with life. It helps being retired as after my treatment I can feel tired for a day or so.One time there was no treatment for melanoma and now we are lucky to have new treatments that are available. Good luck and I wish you well.

Hi Angela, As KT has mentioned me, I thought I'd reply to you personally. I stayed on Dab for over 3 years and then had to come off of it due to side effects. My oncologist said I should come off the drug and allow my system to recover. That was in September 2016 and since then I have not been on any active cancer treatment. I still get regular scans and had them recently so see my oncologist at the end of this month.

I was very active before my diagnosis but after I had a groin dissection I had a problem with it healing and they discovered two tumours in my thigh. After so much surgery at the one sight, I am left with nerve damage they cannot cure. So my lifestyle has totally changed as I am no longer mobile.

However, after being told I had Stage4 Malignant Melonoma that had spread to Lymph nodes, chest, abdomen, bone and eye with 5-7 months to live, here I am watching my 3 grandchildren grow. They are now all at school and we're all here yesterday for dinner, as it was my birthday! I have written and completed at least 3 bucket lists and now just enjoy enjoy every day as it comes. I hope you have a similar result. You have the right attitude by living each day to the full and I hope you have many many more days, months and years to come!

Hi KT, good luck with your scans, I hope you have great results. I had my scans recently and see my oncologist on 26/8 so everything crossed! I hope for the best and prepare privately for the worst! Please keep in touch!

Thanks for the replies. It’s great to hear some positive stories. I guess I just need to get my head around the fact that I have no idea what’s going to happen in the future.

Got my 1 month check up with the oncologist today and seeing a Macmillan nurse from the community palliative care team tomorrow. I’m hoping that a chat with the nurse tomorrow will help me to deal with things mentally. As my diagnosis is pretty new I think I’m still trying to process everything.

I must say, I’ve been overwhelmed by the kindness and generosity of family and friends, even ones I haven’t seen for years, since my diagnosis. Having cancer is crap but I’ve experienced some really happy times since I found out

Angela x