Starting Chemo with DPD Deficiency

Hi lilsimbax 

If memory serves me right process husband has experience of this .

I am sure if she is around she would be happy to answer any questions .

You could check her profile to see .

I have linked her in so hopefully she will be around .

take care ,

Court 

 Anbou Are you able to help please?

Thanks Court I will reply 

Hi I was tagged by Court.  It was my husband that had cancer and the treatments but it’s me on the forum.  He didn’t have DPD but has other conditions which meant he couldn’t follow usual pathway… he has kidney conditions. Full experience on my profile… he had chemo but at 50% reduction he couldn’t take capecitabine after he had toxic reaction but he did have alternatives introvenous when his cancer returned Raltitrexed was used alongside ….right now the second drug had eluded me I’m sorry…anyhow his results were successful and he went on to have major surgery and I’m very pleased to say made a full and good recovery and has remained cancer free since. He has check ups every 3 months scans every six months….the team were good in finding alternatives and did monitor him closely.  May I wish you good luck take one day at a time it’s enough believe me ..any questions please ask. 
process 

Oxilliplatin was the other drug ….at 50%

Hello Kareno62 & Lilsimbax, 

I have posted a few times in last few months when I mentioned the issue of DPD Deficiency. I presume my posts are somewhere in the Macmillan Bowel Cancer postings and can be seen in postings by me Anbou. To recap, I had a much reduced dosage of the two Capox drugs because of my PARTIAL DPD enzyme deficiency. For example, my Capecitabine started at 1000mg 1st cycle but reduced to approx 500mg or less by the 6th cycle because I developed, at a very early stage, a very intense awful cold sensation in the feet and lower legs which became intolerable and therefore my chemo Capox treatment was stopped after the 6th cycle. I did not and could not complete the 8 cycles that had been planned because of this intense cold issue which is probably a form of peripheral neuropathy. It is now 5 months sine I stopped chemo treatment and and this cold problem is stiill with me 24/7. The outer nerves have been damaged by the chemo to cause this. On advice, I am taking Vitamin B Complex daily in the hope that this will help repair the outer nerves and help to gradually reduce the cold neuropathy problem. There has of late been,maybe, a slight overall reduction in this constant cold and achy sensation in my feet and legs. Comfort loose socks, slippers and shoes, as well as putting legs up occasionally does help to soothe a little, as well as walking as much as possible. I do not know if my cold issue was as a result of the way I reacted to the Capox drugs (the Capecitabine leaflet does mention an unusual side effect of cold limbs and extremities) or whether because I have a PARTIAL DPD Deficiency, or due to both.

Returning to the issue of DPD Deficiency, I thought it was essential for anyone about to have chemotherapy to be tested for DPD enzymes deficiency,(PARTIAL or TOTAL deficiency) which I understand affects a small percentage of the population. I believe it is a most important issue to consider in chemotherapy treatment routes and levels. There are references to the DPD issue in Cancer Research UK online publications and various others including one by The Mayo clinic. There is also a reference to DPD in the Macmillan Cancer Support publication titled "XELOX (or CAPOX", on page 5/18. 

In conclusion I expect it is better for cancer patients to be aware of the DPD issue and tessential o be guided and advised by their medical oncologist and supporting specialist medical staff on this DPD issue in respect of chemotherapy and possibly of other treatment paths.

I hope that the above helps and apologies for the length of this post! Best wishes to all.

Anbou.

Hi lilsimbax,

I  am just finishing cycle 3 of capox and I have a dpd deficiency. I am on 800mg of capacetine twice a day with an oxaliplatin infusion (I don't know the dose of this). I  due to have 8 cycles. 

My symptoms have been ok, mainly neuropathy and tingling nerves from the infusion.  The capacetine affects my bowels for a few days after I start the tablets. They just get a bit angry and crampy but nothing I can't cope with. 

If you have any specific questions please post x

I have DPD deficiency and was put on Folfox for 12 cycles over 6 months.They reduced the 5 FU drug by 50% and Oxyliplatin normal dosage .I suffered from PN to feet and fingers but otherwise not too bad with other symptoms.They we’re treating a solitary liver Met after a high anterior resection of sigmoid colon.That was nearly 2 years ago and I am currently NED with scans every 4 months.

Hope this helps.

regards

Macc

Hello, it seems that our story is similar, at least now since I've just begun. 4 cycles, 5FU reduced due to DPD enzyme mutation, full dose Oxaliplatin, tingling I have... how long did you go thru chemo?

If everyone is ok with this . I would like to bookmark the thread to help other coming behind . 
Thanks 

Court