Targeted therapy

Hi,

Sorry to hear that you’re having such a rough time. I’ve been on them for 7 months and am feeling fine now. I had a lot of nausea and tiredness when I started them but was lucky to not have the fevers which I know are quite common. I did find that once I had taken them for three months it had mostly stopped which is exactly what my consultant told me would happen so I’d encourage you to keep on trying if you can as it will get better. I know that doesn’t help much now but good luck and best wishes xx 

Hi,

My Dad started targeted therapy about a year ago. Like you, he had terrible side effects. He had awful chills - just couldnt get warm, and the shaking looked just like he was having a seizure. The shaking was so severe that his muscles would ache terribly afterwards. He ended up in hospital 3 times over a period of a couple of months. Each time he was treated for sepsis although they never acually found an infection -  it was the side effects of the medication causing sepsis-like symptoms. His dose was reduced but he still couldnt tolerate it so his oncologist took him off it completely. He now has scans  and sees the oncologist every 6 months, sees his dermatologist in between scans, and is happy to be getting on with his life again. From what I can gather, his side effects were quite extreme and it may be that if he had made it through those first 6 months then things would have settled down. There are plenty of people on here that have very few, if any, side effects. Best of luck with the treatment - I really hope things improve for you.

Hi Chester

I'm afraid this is only a second hand account of what happened to the friend of a friend who was diagnosed with MM at the same time as me.  Hers was a secondary MM, the hospital never found the primary source and as they predicted it came back again within months.  i am sure she was put on the same 2 drugs - the MM was now on her spine.  The effect of the drugs was that she became very ill and was taken into hospital where it found that all her major organs were shutting down.  My friend told me the effect on her was just like an attack of sepsis.  She has been told that she cannot be put back on these drugs and is now being watched and scanned as the tumour is shrinking.  I should remember to ask for a recent update but I'm sure my friend would tell me if things were getting worse and not better.  As far as I know she is just carrying on with life, just like your Dad.  

I was interested in you saying your Dad had sepsis like symptoms which was exactly the description my friend used. I found it scary to hear that these drugs could have such an effect.  I do hope your Dad continues to remain well and enjoy life.

ThNk you for replying. My shivers were like an epileptic fit. Leaving me exhausted. Can I ask how ol you dad was at the time?

Thank you susie66. I have to start taking them tomorrow at a lower dose. But I’m not looking forward to it at all. ️

Hi Auntyfrosto,

My dad was 73 at the time.

Hi I am on Dab/Tram targeted therapy and have now been on it for 13 months. When I first started taking it, like you, my tremors were really bad and left me completely exhausted. I also suffered from nausea, constant headaches and pain in my knees. I suffered this in the belief that there was no gain without a bit of pain. About 3 months in I complained to my consultant as I couldn’t take it anymore and he suggested a treatment break of 48hrs. Within 24hrs of stopping the meds I felt normal again and again like you was dreading starting the treatment again. I spent the last day plucking up courage and took the dose. I’m not sure what happened during my treatment break but since I restarted the side effects have been fairly minimal. I now know what to look out for and as soon as I start to feel like I did at the beginning I stop the treatment for 48hrs and I seem to manage fine now. I do however feel the cold a lot more than I used to do and very occasionally have mild joint pain and nausea but it’s not something that prevents me from doing anything. I really urge you to stick with it as the treatment really works for some people. I am now NED and have all my fingers and toes crossed that the trend continues. I wish you the very best of luck.

hi  

So sorry to hear you’ve not had a good start . Like you I was so nervous to take and id definitely built myself up to experience the worst side effects . I’m on week three, with the same dose you mention. I’ve been fine to date. Some nausea which passes and is bearable. Also some shivers and tiredness. 
I hope if you’ve started again you are feeling ok and it’s bearable as so far I haven’t experienced anything that’s disrupted my day to day life. 

Thanks 

Thank you for sharing AlfieBulldog. 

I still haven’t started them again yet,  as even after I had only been on them for two days and then stopping, I got even more side-effects towards the end of the week when the drugs must’ve been at their lowest in my system!! I had lumps come up under my skin which felt like I had been kicked and bruised, my wrists ankles and elbows were killing me and I felt completely lousy. I’ve now been advised to go to clinic next Wednesday for some blood tests to make sure nothing inside has been affected and for a review on the dosage, which they have intimated will be halved. But I’m not looking forward to any of it now.

Glad you’re ok Reid06

It’s been a week and I still haven’t started them again yet,  as even after I had only been on them for two days and then stopping, I got even more side-effects towards the end of the week when the drugs must’ve been at their lowest in my system!! I had lumps come up under my skin which felt like I had been kicked and bruised, my wrists ankles and elbows were killing me and I felt completely lousy. I’ve now been advised to go to clinic next Wednesday for some blood tests to make sure nothing inside has been affected and for a review on the dosage, which they have intimated will be halved. But I’m not looking forward to any of it now.