Hi Avril

I had my first dose last Tuesday. Since then I have had mild chemo symptoms - nausea, headche, fatigue, neuropathy - and the runny, bloodynose I got from Herceptin. Much milder than previously but sometimes inteferes with trying to just get on and do things as normal. On previous chemo I was very sick but I was also actually on sick leave. Now I'm working PT and trying to do other stuff so that's a bit of a challenge.

My situation is also complicated by postsurgical glue allergy which unfortunately Kadcyla has worsened (as it interferes with wound healing) so seeing surgeon today to check that out as radiotherapy due to start next week (already over 2 weeks delayed). 

So it's been really a lot milder - but not quite as mild or short-lived as I was hoping - I don't tolerate feeling ill very well I think it tends to make me depressed. I think lack of sleep due to not being able to sleep in a comfortable position is also a factor. I think I just need to readjust my expectations going forwards.

I will restart Kadcyla end July after rads though to May.

How are things with you generally?

Lee - sorry to hear you are also having post-op issues. My right shoulder blade won't rotate flat which is weird.

S

Good morning hon 

thank m really sorry to hear you have had to halt your treatment and it's has complicated things with your health. Its just not what you need while trying to cope with the cancer too. I hope they manage to sort it so when it continues in July it doesn't effect you in the same way. Other than that your symptoms sound a lot milder than before which must be a relief in itself. I really sympathise with you as I think it's hard enough knowing we need another year of chemo. To be honest when I went back to the hospital I thought my surgeon was just going to check my scar so when I was told more chemo I was devastated and shocked. Like you I suffered terribly with the first lot and had sores all over my body and in my throat and gullet and I also had terrible depression. I think it also really effected my thought process. I list so much weight and was to weak to get out of bed so to hear  more treatment was crushing. Hi hope when you start again it will be less invasive and it sounds like other than the allergy side of things your tolerance to the chemo is not as bad and you have gone back to work pt and I think that must really help with the depression. I think it's different for everyone but I really hope they can tweek your medication and it will not be as bad for you and hopefully the other side effects might be less too. I'm trying to keep an open mind while I wait to start but the fear and dread creeps in now and again but I have to stop and change my thought process and just go with the flow and try not to think about it until I have actually started it as there's no point in worrying what might be. It's been really helpful though to hear they are going to try and sort it out but I know that the delay must be so frustrating as we just want to get through it as easy as poss and move on with our lives. I start mine in July but I'm not going to count the months as if my bloods go down or I'm poorly it will obvs be longer. On a positive note we are being treated my lovely and hopefully by next summer we will be well and enjoying life again which I will never take for granted again. Sending you lots of positive energy and il let you know how it's going in July. Take care 

Oh the effects are really mild compared to before - so don't worry about that. I think I'd just got to thinking it would be like nothing at all - which is not quite right. And the whole situation is getting me down just now - you know - it comes and goes in waves.

There is definitley soemthing in the chemo that can bring on depression - apart from the fact that is just a depressing experince in any case. The chemistry is not good. 

For sure the post-surgical problems are my biggest problem. I've got some complicated vacuum pumped dresings on for a week and defintiley radiotherapy is delayed at least a week. 

S

Hello 

Just wanted to ask how you are doing and if things are improving for you? I have had my 1st TDM and started Letrazole the oestrogen hormon blocker and have not experienced the side effects anything like before other than fatigue and a bit of nausea, runny nose but the anxiety really is the worst and comes and goes in waves it seems to be at its worst in the mornings but I'm hoping it will settle in time. Do you think the TDM1 goes deeper each time like the other chemos or do you think it is just stays the same each time as I am due to have 14 cycles which I'm anxious it being worse each time and by a few cycles I would not be able to tolerate it. 
Take Care x

Hi S., thanks for you reply and I'm sure you are fed up waiting for treatment as I think we just want to get through it as quickly as possible. I hope your skin calms down soon too as it's just another thing you don't need right now I'm sure. Two weeks before my treatment started again I couldn't sleep so took a course of sleeping pills but think I should have reduced them instead of just stopping and I think the anxiety is down to that plus you he hormonal changes and being feared up with more chemo. I have realised the sleeping tablets were the wrong choice > quick fix but in the long run it's made me feel a lot worse so I won't be doing that again!! If the anxiety is due to stopping them then hopefully the only side effects seem the same as yours. I will keep you updated when I have the next cycle without any other meds to cloud my judgment. Good luck with moving forward with your radiotherapy and thank you again. 
Take care Avril 

Hi Avril - how are you getting on? I'm half way through radiotherapy and not too bad so far <<touch wood>>. Bit tired. S

Hi S 

So pleased to hear your getting on ok with the radiotherapy. I have my first appointment tomorrow not sure if they will start it then or book me in. I have had my 2nd TDM1 along with a drug for bone density Friday just gone. Came home and slept 24hours just waking to take paracetamol for aches n flu like symptoms but they disappeared after 12 hours and now I feel fine. Also my crushing anxiety has not returned so it was the abrupt stopping of sleeping tablets which I'm so happy to say. I'm hoping the next cycle without the bone density drug will make it even easier. So far so good and I wish the same for you when you restart. I'm eating better and feeling so much better thank goodness so let's hope this drug continues to give everyone less side effects. 
Take care AJ x

That's great. That bone drug gave me a lot of aches and pains <bleugh> but thankfully it's only every 6 months. Glad to hear TDM1 is going OK. Mine should restart later in August after rafiotherapy. S

So hopefully we are getting there. Cancer as dreadful as it is has taught me so so much and patience is certainly the biggest lesson closely followed by tolerance lol. Keep me informed how you are getting on and I hope your journey gets easier 

TC Av x