Targeted Therapy - what’s it like ?

Hi Reid06 and welcome to the group. So sorry to hear your journey, it sounds like you have been through the mill so to speak but your amongst friends here who have a wealth of experience and are more than happy to share.

I started Dab & Tram in January 2019 and have been on it ever since. The medication will only be prescribed & administered if your blood tests are ok so the appointment usually takes about 1.5 to 2 hours every month. I usually opt for a noon appointment so we can go for lunch while the blood results are being processed and I find this makes the wait a little more tolerable. As far as taking the meds is concerned you take it in 2 x doses 12hrs apart, when you take it is up to you so as to not interfere with your life too much. You can’t eat for 2hrs before you take it and 1hr afterwards. I take mine at 04:30hrs and 16:30hrs as I find this works best for me but it won’t suit everyone.

 When I first started taking the medication it made me feel terrible ( sorry ) I totally lost my appetite and suffered from terrible itchy rashes, tremors, hot flushes and headaches but I was desperate for something to work so I lived with these side effects until April 2019 when my clinical nurse specialist suggested a treatment holiday where I only took the tram once a day and stopped taking the dab for three days. I was so worried about starting the treatment again for fear of a repeat but it wasn’t to be and everything thankfully settled down and I commenced as normal a life as I could. 

Since June 2019 I have had a complete response and have been NED which is remarkable considering I had multiple mets sites not 6 months previously so the medication definitely works for me. Unfortunately the side effects do show up now and again but the longer you take the medication for the more in tune you are with what to look for and how you feel so you can introduce a treatment holiday...it’s a bit like pressing the reset button when you have to and away you go again.

I hope that this answers your concerns and I’m sure others will advise if I have missed anything, please however remember that the above is purely how the medication has effected me and everyone is different. Fingers crossed it suits you like it does me and you are NED in no time.

Thank you AlfieBulldog lots of good info that I hadn’t thought of.

i hadn’t really thought of length of appts - so that’s useful to know.

Weve yet to discuss the times of tablets so need to have a think about what works.

Excuse my ignorance - what does NED mean ? Also how quickly did your side effects start ? How did you plan your life , did you just plan as normal and dealt with how you were feeling as and when . Sorry for daft questions!

totally appreciate everyone is different and but information helps me ! thanks again ! 

Hi Reid06,

No problems, there aren’t any daft questions on here, if your not sure then just ask...it’s the best way.

NED - No Evidence of Disease.

My side effects started a couple of days after taking my 1st dose. I simply carry on as normal and just ease off a bit when not feeling too good. With me I start feeling really cold with dull headaches that aren’t bad enough to disrupt my day to day life but if I carry on taking the meds my headaches become intolerable, almost migraines. Nobody knows your body like you do and believe me you will know when your not feeling on top form and you will know when the reset button needs to be pressed !

I do however recommend you give the medication a go as the positives far outweigh the negatives. I swapped onto Dab & Tram after my Ipi / Nivo combined immunotherapy was stopped due to grade 4 side effects and months in hospital recovering, it really didn’t suit me but thankfully the Dab & Tram is working for now and I’ll take that !

hope the above helps.

Thanks AlfieBulldog again. 
Will def give a go - got to trust what the Drs have told me. That’s helpful - and it will definitely be a challenge listening to my body - more in the sense I would naturally be someone to fight through colds etc and It might not sensible to do that. 

Fingers crossed and will no doubt continue to ask questions ! 

Hi Reid06, Anytime you have a question don’t be afraid to ask. If I don’t have the experience I’m confident that someone on here will have.

Fingers etc crossed for you and wishing you the very best.

HI Reid06,

im on dab, tam, been on it 7 weeks now, ive metatastic melanoma, stage 4, I was on dab, tam , for a week and caught a chest infection so had to stop, I don't know what scared me more when I was told I was incurable or them telling me I had to stop treatment, got back on it after finished antibiotics, had to have bloods taken and chest xray, now been on it 7 weeks, I get a few dull headaches, and get tired quickly, but just do what I can do when I can do it, I look after my disabled mother, and my partner is waiting to go in for new knee op,( bunch of sickos ) do have hot flushes and then cold spells, but if treatment is working so be it , have appointment the 27th with consultant , so hopefully will get scan date then , I have a blood test at my Gps , to save time at hospital appointment, (have enough hospital appointments what with mother and other half) , im hoping im doing fine and no more surprises . if you have any problems your team should give you a number you can ring and talk to someone, 

best wishes to you xx

Max

Thanks for sharing.

im with you on those appts, with my first excision wound being checked 2-3 times a weeks, plus this there’s only been a few days where I haven’t been somewhere .

my husband also recovering from a carcinoid tumour being removed from lung 6 months ago ( what are the chances ) but he long each other through it all . 

yes been given numbers to call which is good. I’m normally a control freak so the unknown is tricky to get head round . It’s good to hear how people managing though .

thanks again ! 

Hi Reid06, It sounds like you’re going to have dab tram as an adjuvant treatment to mop up any stray cells to help prevent them from spreading. (Please correct me if I’m wrong). In 2015 I started Dabrafenib on its own (the Tramatenib was only available in addition on a trial back then) I had metastatic melanoma in many lymph nodes in my pelvic and abdominal area, no surgery and not feeling at all well when I started Dabrafenib. The targeted therapy worked quite quickly for me, of course that could be a placebo effect but within a week I felt things were feeling better and my first scan 2 months later showed things had shrunk after 9 months though I was moved onto Pembrolizumab as the last scan showed a progression to my left ovary.  

I remember feeling it was life or death for me to take the tablets exactly as instructed 12 hours apart with the 2 hour and 1 hour rules. It was tricky working out when was the best time, as I had also been diagnosed as diabetic at the same time and told to eat at regular times. Do I take at as soon as I wake up and wait for breakfast, or have breakfast as soon as I wake and then take it. What about the weekend effect no more lie ins if I have to take it early. I used to go out with friends and sometimes had to explain to them I had to wait another half hour before I could order, and at a Christmas get together having to turn down canapés. I remember some chatter on here of people taking their tablets to work and having them at 10am and then at 10pm just before bed. I also remember another lady saying how awkward it was making a separate meal time for her husband as he was no longer able to eat with her and her children due to the timings he had chosen so it is something to think about. I have a daughter who lives in Japan and I am aware that the tablets are an option for me again if I have another progression, I wonder how I would manage with the 9 hrs time difference and meals and flights if that were to happen, but if you want something enough you find a way I suppose, and let the cabin crew know or take snacks it just takes a bit more thinking about.

I remember being so relieved when it was working and finding someone on this site who had been on it for 2 years. I think as time goes on you get more and more used to it and I’m assuming you are having for 1year and so it’s good to have that end date in sight. 

Side effects for me I’m finding it hard to remember, I know all my freckles disappeared and my feet felt a bit tender, and my skin was very dry. I wasn’t walking well when I first started them the lumps in my groin when those eased made things easier and I was on a mission to increase my fitness. Every four weeks I had a blood test was weighed and saw a dr about an hour later (if everything was running to time or) then went to the hospital pharmacy to get the tablets (prescription is free) there was usually a 40 minute wait as even though the instructions are sent electronically there were protocols to go through so I was usually told to go for a cup of coffee and come back at a set time. I found if I left the gap before going to the pharmacy that didn’t work as no one was looking out to get the prescription ready. My advice is to ask the best method for your hospital, and take stuff to do, my go to is a codeword book in my bag, or buying a paper. Patience is something that if you are not already skilled in that you need in bucket loads. It took an hour to get to the hospital so it was a big chunk of the day. My husband who always came with me spoke to his work and they arranged that he could have a lap top to work from home to catch up some of the hours in the evening or weekend or take holiday, and then he reduced his hours on top of that so it was less stressful. I’m assuming as an adjuvant treatment that you are feeling well at the moment so that kind of negotiation isn’t an issue but in the ask an expert section there is a work support team (I’ve linked it below)

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask-a-work-support-adviser/discussions

I hope some of my ramblings help, and that you work out your best timings, see the treatment as a good thing and look forward to it coming to an end while being able to cope during it ok. I’ve put a link to the side effects below (excuses if you’ve seen this)

https://www.macmillan.org.uk/information-and-support/treating/targeted-biological-therapies/find-your-therapy/dabrafenib-with-trametinib.html#323924

Others have said how important it is to keep your team appraised of your side effects and take a break when they recommend it, I was given a card with the numbers on to ring, and told to have it with me at all times.

Good luck and ask as many questions from us all that you need.

Thanks KTatHome 

That’s so useful to know. Covered a lot of the stuff that’s being going on in my head. You are correct in that I am feeling totally fit and well at the moment and the adjuvant therapy. 
Patience is not something I am blessed with ( quite the opposite ) so will need to dig deep for that! I’m in a similar situation as you with hospital being an hour away .

The impact of the meal times  is something I’d been thinking about - it’s funny the stuff that worries you and so insignificant really , but I’m naturally someone that has a good social life and likes to enjoy life. I guess this currently feels like I won’t be able to do this . But I’m getting more reassured that you find a way through whatever effects you are faced with .

thanks all - your stories are helping so much ! 

i am 7 weeks into treatment, I have had a couple of side effects, mainly tiredness and feeling really cold and achey  (a bit like the flu), when I feel like this though I speak to my nurse and I can have a break for a couple of days and start again.  I am still getting used to taking the tablets but starting to recognise when it’s the tablets making me feel ill and not just a bug.

With regard to timings, you just need to work out what suits your lifestyle. I tried a couple of different times to find the one that suited me. I have found setting my alarm for about 5 in the morning, means I can go back to bed for an hour or so, so I can have my breakfast before I head off to work.  Then in the evening I take my tablets just as I am leaving the office so by the time I get home I can have dinner.  This has minimal impact on my social activities as well.  You will find the time that works for you, on the plus side it has stopped me snacking in the afternoon.

If you have any other questions happy to help.