Feel Like a Failure

Hi Nicnak72 

My wife got half way through treatment with Doxyrubicin, had a scan and got phoned with "we would like to see you in triage" - she suggested the next day as I was at work and they said that they wanted to see her sooner than that. So I rushed home and off to hospital where we found out she had a partially collapsed lung. She had a total of 6 of those before they managed to fix that issue.

So - it sometimes does not go as well as we might hope. Sounds a pain that the pharmacy had no stock of omeprazole - Janice and I both have that because we sometimes take Naproxen.

Definitely get the terrified bit - hope things get a bit more under control soon.

<<hugs>>

Steve

Thanks for the hugs Steve. 
Felt very down when I posted the message and it genuinely does help to know other people didn’t always have a straightforward journey. I hope your wife is on the mend now! 
I keep reminding myself that these are very toxic drugs and that this is a fairly common occurrence. Hopefully my oncologist can sort it too. 
Scary times, but it’s a journey isn’t it xxxx

Nicnak x

Please never feel like a failure - because you’re not! 2 days is better than 1 day..12 hours…1 hour… point is, you tried it! 

it’s totally normal to react to medication in different ways. We are all built differently, with different reactions and different recovery levels. We just need to raise concerns as they arise.I live in hope that for most treatment dilemmas, there are solutions. 

I’m at an earlier part of the process, so I’m sending a lot of strengthening vibes your way! 

I completely understand why you felt like a failure. I had two infusions of Oxiplatin, and cape tablets. I suffered a toxicity that my body couldn’t handle. My oncologist withdrew the oxi, and I did two more cycles of just cape. I felt so disappointed with myself. I have since heard of more and more people who can’t tolerate this combination of chemo. 

Thank you for your kind words SoniBee. I’m feeling your vibes and sending a whole load in return cx

Thank you Jools. This is actually quite interesting for me and does make me feel less rubbish. I posted this original message after my first round 3 weeks ago and had my second round this Friday. Exactly the same thing happened with the violent pain and the breathing problems. I’m not sure if it was the oxy or the cap that caused it, hoping to see my oncologist ASAP. I now think it’s a lung thing rather than a heart or gastric thing. Do you mind me asking what your side effects were? I genuinely can’t handle this and I thought I was going to be able to. 

Thanks for your support,

Nic

Update:

So after the second round causing so much pain again I’ve tried to get to the bottom of it. Seems I have a rare but documented adverse reaction to capecitabine which caused aortal spasm. Apparently it “mimics” a heart attack, but doesn’t leave a trace on EEG’s or blood tests. No wonder it was difficult to find! A and E were amazing, I went in and explained where I was coming from and asked them if they could check me over. After bloods, heart monitors, chest x-ray, CT scan with contrast, they explained what they thought it was and it makes perfect sense. Now to see my oncologist next week after I’ve had a bonfire with the remaining tablets. 

My gosh!! Well the silver lining is that now you know how your body is reacting to the meds & why you have been feeling the way you have! Hopefully the Oncologist can provide an alternative option that your body will be able to tolerate better x 

Another bump in the road which you will jump over!

Keep your head up & smile! You’re doing brilliantly well!! 

I’m so impressed that both of you got as far as you did with 2 chemo agents… not just one …two strong drugs!!…I can barely tolerate a full Paracetamol!!! …  

Further update. Saw one of the registrars at my oncology clinic last week and she said we’ll sack the capecitabine and try raltitrexed instead. I had the weekend to make my mind up before seeing my actual consultant on Tuesday. 

Despite me thinking I would try the raltitrexed, she basically said “There’s no point”. She want on to explain that adjuvant chemo shouldn’t cause such horrific stress and pain, so let’s just stop the chemo completely!

So there we are! I still have to have a PET scan to check out the weird node in my lung, which can’t be done until 5 weeks have passed from chemo, so that will be in the new year. She said if it is cancer, they won’t use chemo to remove it as I clearly do not respond well to it.