5-FU & Xeloda Extremely Allergic-

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StupidAssCancer
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5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Sun Sep 29, 2013 9:44 pm

I was diagnosed with stage 3c Corectal cancer in March 2013- Syrgery to remove Timors in April with a Jpouch Temp Illiostomy. IV Chemo treatments started in May- 3 months of 5-Fu along with Oxi- the same cocktail everyone else is given. The third treatment so week 5 I developed extreme stomach pain and my stoma doubled in size was bright red and angry! So very painful. Dr dose reduced and continued dose reducing due to same horrible pain reaction each time I was treated. The pain was so bad it felt as if I was beaten up. He said it was basically shredding my intestines which was causing the severe pain. He stopped my treatments so I never recieved round 6 do to this reaction. He sent me to radiation for the following 6 weeks ong dude prescribed me xeloda. This did not work for me. On day 6 of xeloda I Experienced extreme chest pain and pressure. It felt as if I was also being choked. I could not even swallow water. I ended up in the emergency room and they diagnosed me with being allergic to his Xeloda. Apparently I do not have the proper enzymes DPD to metabolize the xeloda or 5FU. My symptoms are- Extreme Rapid weight gain Chest pain pressure Throat tightness Trouble swallowing Dizziness Itching all over Hives Extreme Diarrhea every hour dumping my bag Legs swelling Left hand pins & needles Left arm heaviness Night sweats Extreme stomach pain. Has anyone else had these experiences? What was your alternative treatments? I have searched the Internet and am not finding enough information about this. I have been told I could have a heart attack at any moment. I do not feel I was sufficiently warned that this could happen. Tell me about your experiences with these drugs
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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StupidAssCancer
Posts: 69
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Location: Utah

Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Sun Sep 29, 2013 10:34 pm

I really know how to spell! My iPhone was not kind auto-correcting me!
Any help u can give is very graciously appreciated!
xoxo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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Bev G
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Re: 5-FU & Xeloda Extremely Allergic-

Postby Bev G » Sun Sep 29, 2013 11:26 pm

Hello Alys,

Yes, what you experienced certainly does sound like a DPD deficiency. Just means you are missing the enzyme necessary to metabolize the type of drug that 5FU is. It's not an allergic reaction in the classical sense, and therefore, I doubt very seriously they could do anything to "de-sensitize" you, such as what can be done with oxi allergies. I think you just won't be able to take any more 5FU in any form.

As far as not being properly informed about the risk before you were given the drug, I don't think there was any practical or legal requirement to do so---DPD deficiency is really, really rare. When you exhibited these symptoms, they tested you for it, as they should have. It is SO infrequent is would make no sense at all to test everyone before they are given the drug.

http://ghr.nlm.nih.gov/condition/dihydr ... deficiency

I'm so sorry you went through this.

Best wishes to you,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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StupidAssCancer
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Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Mon Sep 30, 2013 12:32 am

Bev,
Thank you for the info! I have been super frustrated as last week when the Xoloda symptoms came on my Oncologist was unavailable and his PA let me know he felt my symptoms were due to anxiety! He was not happy when I did my research and found the DPD Information. I requested to be tested for the lack of the enzyme DPD etc and he said he has never even heard of the test. So mega frustrated when I read how dangerous this drug can be for someone like me who is most likely DPD deficient.
I think I'm also frustrated as my oncologist recognized the 5-FU reaction on week three on iv infusion which only progressively worsened over the following 11 weeks of infusion to yhe point he stopped me all together yet still prescribed xeloda. Xeloda is basically 5-FU in pill form once metabolized so questioning this decision now I am laying here with major side effects and worry.
I'm normally a positive upbeat person- and I like to have a plan. Right now it seems there is no future plan for me to fight what cancer may be remaining in my body due to the drugs used to fight it causing such adverse reactions-
Feeling lost and frustrated
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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O Stoma Mia
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Re: 5-FU & Xeloda Extremely Allergic-

Postby O Stoma Mia » Mon Sep 30, 2013 1:38 am

StupidAssCancer wrote:...I requested to be tested for the lack of the enzyme DPD etc and he said he has never even heard of the test...



How can he say that he has never even heard of DPD? DPD deficiency is mentioned as a contraindication right in the Xeloda product brochure.

Who should not take XELODA?

Do not take XELODA if:
  • You are nursing a baby. XELODA may pass through your breast milk and to the baby and harm the baby
  • You are allergic to the chemotherapy medicines 5-FU and capecitabine or to any of the ingredients in XELODA
  • Your body doesn't have enough of the enzyme DPD (dihydropyrimidine dehydrogenase)



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StupidAssCancer
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Re: 5-FU & Xeloda- DPD deficiency- Life Threatening!

Postby StupidAssCancer » Mon Sep 30, 2013 1:57 am

Exactly!!! Argh so frustrating! I've been up all night reading articles about this. It is a blessing I am even alive right now! With the symptoms and reactions I have had to the 5 FU and xeloda from what I have read most people have died.
I realize it is only 3-5% of the population that this happens to but if you are like me I believe those are high enough odds to be testing anyone and everyone that will be taking 5-FU or Xeloda! I am willing to go as far as to say- do not take any chemo 5FU or Xeloda without being genetically tested for a DPD deficiency!! It could save your life!
Also the testing for this DPD deficiency has become widely available yet very rarely used by Drs as it is not currently "The Standard of Care" I am ready to do whatever I need to, to change that!
No one should ever have to die, suffer in pain :evil: or worry as I have the past 2 weeks when there is a simple little test that can prevent this! :evil:
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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Patience
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Re: 5-FU & Xeloda Extremely Allergic-

Postby Patience » Mon Sep 30, 2013 2:53 am

You might find some interesting information on these threads, among others. [Search: "xeloda"]:

Theraguide 5FU
viewtopic.php?f=1&t=42939

Xeloda question
viewtopic.php?f=1&t=43809

bad bad folfox first round. folfiri next? [Scroll down for toxicity discussion starting with Postby janklo » Fri Sep 24, 2010 6:11 am]
viewtopic.php?f=1&t=15035&hilit=theraguide&start=15

Quoted from https://www.23andme.com/health/fluorouracil/
About Fluorouracil Toxicity
5-fluorouracil (5-FU, brand name Adrucil ®; also sometimes prescribed in a different form called capecitabine/Xeloda ®) is a chemotherapy drug used to treat several types of cancer, including colorectal, breast, esophageal and stomach. Although the drug is very effective, there is a downside: about 30% of people receiving this therapy suffer from serious and sometimes deadly toxicity.


Quoted from http://www.myriad.com/products/theraguide-5-fu/
TheraGuide® 5-FU: Personalized Medicine for Customized Chemotherapy
There is tremendous benefit to identifying the risk of severe side effects before starting a 5-FU treatment. Knowing whether or not the patient is at high risk for side effects will help to make the best possible treatment decisions.With a positive result, physicians may adjust dosing or choose a different treatment because the patient is unable to tolerate 5-FU.With a negative result, the physician is assured that they have ruled out many toxicity risks related to DPYD and TYMS genetic variations.One in four patients carry variations in either of two genes, DPYD or TYMS that will increase their risk of dose limiting adverse events to 5-FU-related therapy.
Last edited by Patience on Wed Apr 16, 2014 11:39 pm, edited 1 time in total.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

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StupidAssCancer
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Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Mon Sep 30, 2013 9:38 am

Thank you for posting these links. Yes last night I actually visited everyone of them. I was up all night researching. How frustrating it is that the patient has to research instead of the oncologist.
I have not found in all of my reading anything that tells me what the next steps could possibly be. It seems the only treatment for colorectal cancer is a 5-FU or xeloda regimen. I am wondering if anyone has been down this road and faced this battle what their next step was?
I see my oncologist tomorrow. If you have any suggestions of questions I should ask please send them. I am so very sick right now I'm grateful to be alive. I am also wondering if I am out of the dangerous zone???
It seems several of the people that have died from 5-FU or xeloda passed away at many different times in the cycle. I have not taken xeloda going on five days now.
The Emergency room had no idea what I what I'm dealing with and sent me home. When i called the ER back to report the DPD signs they said they have never heard of this! My physician's assistant assumed this was anxiety.
I am reading that many people experiencing my symptoms have passed away. This is very serious. Not something to be brushed off as anxiety. I am extremely ill. I will repost my symptoms here-
Extreme Rapid weight gain-1lb a day
Chest pain pressure and tightness
Throat tightness
Trouble swallowing
Extreme Dizziness
Itching all over
Hives
Diarrhea
Legs swelling
Left hand pins & needles
Left arm heaviness
Night sweats
I feel like my memory is faded

Does anyone know if I am still at risk of a fatal outcome?
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: 5-FU & Xeloda Extremely Allergic-

Postby O Stoma Mia » Mon Sep 30, 2013 12:38 pm

StupidAssCancer wrote:...I see my oncologist tomorrow. If you have any suggestions of questions I should ask please send them...
....
- Chest pain pressure and tightness
- Throat tightness
- Trouble swallowing


When you see your oncologist, could you ask if there is some sort of bronchodilator medication that could be prescribed for emergency use in the event that your mouth/throat/nose/ become so swollen or puffed up that you can no longer breathe? This would be something that you would carry with you at all times but would use only in an emergency to clear a blocked air passageway. Also ask if you should be taking some kind of antihistamine, like Zyrtec or something else that would reduce the level of systemic allergic reaction.

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StupidAssCancer
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Facebook Username: Alys.Geertsen
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Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Mon Sep 30, 2013 4:59 pm

great suggestions! I will report back tomorrow
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

justin case
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Location: Katy, Texas

Re: 5-FU & Xeloda Extremely Allergic-

Postby justin case » Mon Sep 30, 2013 5:26 pm

Just a thought, and I could be extremely wrong, I know people don't get along with FOLFOX, because of the OXI. I know people who have not gotten along with the XELODA, and went on to do 5FU alone, and were OK. I by no means want you to try something that may hurt you, but perhaps you may ask your Oncologist about it.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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StupidAssCancer
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Location: Utah

Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Mon Sep 30, 2013 6:22 pm

Micheal,
In my case that could be a life or death, most likely death situation. A DPD deficiency is stage 4+ toxic which is lethal. With My symptoms and deficiency if given another dose it could immediately result in death.
Here is some great conversation and education about this-
http://www.dpd-deficiency.com/
http://www.cancercompass.com/message-bo ... 2909,0.htm

No one should ever take 5-fu or xeloda without prior DPD testing and I will be hell bent to get this into the standard of care. If I have to make it my life mission!
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: 5-FU & Xeloda Extremely Allergic-

Postby justin case » Mon Sep 30, 2013 6:45 pm

StupidAssCancer wrote:Micheal,
In my case that could be a life or death, most likely death situation. A DPD deficiency is stage 4+ toxic which is lethal. With My symptoms and deficiency if given another dose it could immediately result in death.
Here is some great conversation and education about this-
http://www.dpd-deficiency.com/
http://www.cancercompass.com/message-bo ... 2909,0.htm

No one should ever take 5-fu or xeloda without prior DPD testing and I will be hell bent to get this into the standard of care. If I have to make it my life mission!


Honestly I did not try to be flippant. I have heard of this test, and some people test positive for it. I really don't know if I was ever tested, but if it that detrimental to some people, it should be a standard of care! Any advocate for a standard of care, will receive what little support I might give.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Patience
Posts: 834
Joined: Fri Dec 09, 2011 10:26 am

Re: 5-FU & Xeloda Extremely Allergic-

Postby Patience » Tue Oct 01, 2013 7:03 am

As it was explained to me by one of the testing companies, don't overlook that some folks are not compatible with 5FU and/or Xeloda, but the "test" will NOT pick up on it. That is because the test only looks at certain genes problems, and there could be many other reasons besides those specific genes that can cause a negative reaction to the drug(s). The test will identify some of the people who might have a problem, but not all of the people.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

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StupidAssCancer
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Re: 5-FU & Xeloda Extremely Allergic-

Postby StupidAssCancer » Thu Oct 03, 2013 6:36 pm

My oncogist was very apprehensive to agree to give me the DPD test. He said "It's not part of the standard of care" I'm sooo sick of that answer! Oh but dieing is?!
So finally he agreed however from what I've read you need three vials and he only took 1 so who knows if he has even requested the correct test. He said results will be back in 7-10 days.
Meanwhile I continue to suffer. Gaining 1 lb a day, extreme inflammation now throughout body, covered in itchy hives, diarehea like nobodies business, and down right miserable!
He told me I will have no more 5-fu and no more xeloda. He said there isn't a back up chemo drug for adjacent chemotherapy so my chemo is over. He does however want me to continue radiation without chemo. I have 23 radiation treatments left. What do you think about that? From what I understood radiation of colon rectal was not effective without the chemo so I don't understand why now he wants to do it with the chemo?
Let me hear what you think,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy


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