New to the group - saying hello

Hi Purplemurph

I'm sorry to read your diagnosis and that you have had a severe reaction to Oxaliplatin and Capeticabine.  It must be so difficult with the language problem for you, and as you say the health care is so different from country to country.  Having said that most European countries have very good cancer care.

Here in the UK DPYD gene testing is being implemented in our NHS hospitals (although it s not available in all our hospitals at the moment).  The test is being offered to patients whose suggested chemo is 5-FU or Capecitabine.  It looks for a deficiency in the enzyme DPD which helps our bodies break down these chemo treatments.  It is very rare to have no DPD but between 2 to 8% of people can have a partial deficiency.  If anyone is found to have a deficiency treatments can be adjusted to help prevent severe side effects.  Would you be able to ask your medical team if you can have or have had this blood test carried out?  Regardless of whether this test is available in Spain, I am sure that your medical team will do all they can to prevent this happening again.

Hi

Big welcome from me to . 
If you click on my user name you can read my mum’s story . It was her second infusion that she had a bit of a reaction . Hers was a spasm of her larynx. It felt as though she was being strangled  however it was purely a sensation and her airways were wide open but unpleasant none the less . However they did reassure her that they would slow down her infusion over six hours and added something to prevent it which I am happy to say worked and she never had it again . Has your team made any suggestions ? 
Despite being quite tough for my mum on chemo it did a fantastic job which allowed surgery . I hope you get a good response to treatment .

We have lots of people contributing from other countries. It’s good to have you with us . 

Take care and feel free to join in any discussion or ask questions .

Court 

Hi there, 

i had stage 3 colon cancer in June 2019. Following my operation I had chemo for 6 months. Oxalaplatin IV  and capecitabine tabs on a 3 week cycle.

i had the thorax restriction after the OXY IV - from the start - as you say frightening. I was told to put my hand over my mouth and breathe in and out the warm air. I also had a drink of warm water. After a while it did the trick. I experienced severe bouts of coldness in my hands and feet. Warm socks worn all the time with fleece lined slippers.

OXY IV does cause you to have a reaction to metal door handles, fridges, freezers and in fact anything metal. 
After 5 treatments my platelet levels were low and had to put off chemo for 1 week. This continued for my last 2 treatments.

Neuropathy kicked in and stayed after my 6th treatment - I still suffer with this after finishing my chemo 3 months ago. Night time is the worst - feet feel very weird and cold. My finger tips are numb. But I did have a CT scan which gave me the all clear. I have my colonoscopy follow up this Friday. 

you are doing well. Make sure you wrap up warm after your IV - I found the arm they put it in via canala very cold and prickly for about 7 days after - wrapping a towel around the arm worked for me along with hand warmers.

GOOD LUCK with the rest of your treatment.

HI VickiLynne

Thanks for the information about DPD, I will definitely make enquiries about this.

I know they do a test prior to each IV transfusion and I am also due to see an allergy specialist hopefully very soon to discuss what happened. This might be where they bring up the possibility of the DPD enzyme issue.

Spain has an excellent health care system, it's know to be one of the best in Europe and so far I can attest to that. Language-wise it's OK I can make myself understood, and I have people with me to translate all the time. The main problem is the masks because of COVID! I am deaf and heavily reliant on lip-reading so I have to keep saying, please can you lower your mask so I can understand you - all the time. Should have a sign round my neck and save my breath! Everyone is very accommodating though. 

Thanks for the signpost to the other forum which I have now joined.

PM

Hello Court

Thank you for your kind welcome. Yes I remember they were trying to pump oxygen into me and I was managing to drag some air in but because it was drying my throat out, I instinctively swallowed - big mistake as the throat did not open up again afterwards so that's when I felt like I was being suffocated. So note to self: if it happens again (hopefully never)...DON'T SWALLOW!

Yes they did say they would make adjustments next time - I suspect along similar lines of slower transfusion time and antihistamines. It's still going to be a little scary going in next time though. I just have to trust in them. Glad to know it never happened again with your mum and great news that she responded so well. That's so encouraging for me.

PM

Hi Probo

Thanks for your reply and sharing your experience. Yes I have same: numbness in fingertips, sensitivity to the cold, tingling hands and feet, and after the IV- 'claw hands' - muscle constriction in hands and in calves for a few days and the achy 'canula arm'. 

I get quite breathless when I'm moving around too, but that might be the allergy? Not sure. It's not too bad - I just take the time to breathe slowly and deeply and it subsides. 

I can live all with that. It's summer here in Spain now so I'm not feeling the cold yet. It will be interesting to see how I am when the weather is a bit cooler.

Fantastic news that you have been given the all-clear after just 6 months treatment! That's amazing. And very encouraging for me.

Thanks again

PM

hi

Sorry I forgot to ask. Regarding the allergic reaction to the Oxaliplatin. Does anyone know if it's the platinum element or the Oxalic element that triggers this?

The reason I ask is that I am following an eating plan to incorporate more vegetables, particularly dark leafy green veg and berries which are highly recommended for boosting immune systems and helping with fighting cancer. But some of these contain high amounts of oxalates so I was wondering if that would cause problems if ate alot of them?

Thanks

PM

Good point about the food interactions . I would definitely give your team a call . My mum’s treatment was ten years ago and back then they limited the amount of green veg during treatment but was fine to eat off treatment . It was so long ago though the practice has possibly changed .

take care ,

 Court 

That’s interesting that they identified green veg as a potential problem. That tells me that it could be the oxalates that are the issue.

thanks. Will investigate further.

PM

Hi PM,

I did contact you on the other forum Living outside of the UK... Not sure if you saw the message. Hope your treatment is back on track...

dd