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Severe Allergic reaction to Oxaliplatin - I almost died!

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Yep, I almost died last  Monday!  I had what was to be the second of four treatments, I started feeling mucus going down the back of my throat and started coughing.  I called one of the kids to bring me some cough drops to the cancer center. I also had sudden low back pain.    By the time my son got there, my chest began which had been at a pain lever of about 2 then  to 4,  I thought at first just from the cough, but then it got suddenly worse and if felt like my lungs were suddenly congested and the pain shot up near a 6.  Then suddenly I couldn't even reach over for the nurse call  button, and had to have the kids get the nurse for me.  I  asked the nurse to get the doctor, by the time he got there, my pain in back and chest were 10!  he told the nurses to give me steroid injection and some benedryl to lower the allergic reaction.   He actually asked if I wanted to just wait there until I felt better or go to the hospital!  I asked them to call an ambulance.  I got to the ER and they admitted me to the hospital.  The CT scan of lungs showed very cloudy indicating fluid of some type and the EKG said they could not "rule out" possible infarction.   My D-Dimer was at 20, which indicates high possibility of blood clotting.    

Surprisingly, the hospital doctor told me the next morning that my tests were all okay and I could go  home.  I sure didn't feel ok and hadn't seen the reports myself, so didn't know how bad it was.  I went home and slept all day and slept most of the day on Wednesday and Thursday.  I was in my pajamas all last week until I had a doctor appointment on Friday to review a bone scan from the week before.  It showed the bone tumor still glowing on the scan  so I scheduled appointment with radiologist.  I met with him on Wednesday. and he said he couldn't believe the hospital doctor had told me my test were all ok and that he sent me home without a pulmonologist seeing me.  He said the CT actually shows a lot of either fluid or inflammation, and there is a partial collapse of my lower right lung, and that the hilar lymph node which has metastasized has grown and is causing partial collapse of the bronchial tube leading into right lung.  

So WOW!  Yes  I could have died apparently of either a heart attack or blood clots.  Thank God this reaction happened while I was at the clinic and had only gotten 1/2 of the oxaliplation.  I  thought at the time that I was going to die.   I could barely even talk at the hospital and when they asked why I was there I couldn't get out the whole work of "oxaliplatin" or the nurse didn't understand me so she put down that I had a reaction to oxycodone!  So yeah, my discharge record said I was seen for reaction to oxycodone!  I have to go to hospital records and have that changed before they list me as a drug addict.

Also going to ER today because I just got results from the chest X-ray from  yesterday showing fluid in my lungs indicating edema or infection.  I can't get into a pulmonologist for a week.  

I am going to my oncologist at Mayo Clinic the first week of February to see about a new treatment plan.  He told me that if the oxaliplatin doesn't go well he wanted me to try Regonorifb and Nivolumab.  He is on the board for clinical trials too so may be going on a trial if he thinks it's better for me.  

I am so very thankful I survived that allergic reaction!  I've heard of people dying during or after infusions so now I totally understand how quickly it can happen, even if it's a medication you've tolerated in the past. 

I had 8 infusions of  oxaliplatin in 2016 and had one round in December.  I didn't do very well after that one, and was in the hosptial for 3 days in December due to uncontrollable nausea after that treatment,  I also got a fungal infection under my breast from that December treatment.   So I really didn't want another infusion of oxaliplatin, but agreed to a reduced dose at the doctors insistence that it was the best treatment for me at this time.  It's hard to refuse treatment when you're worried about cancer growing in your body, and I know he wouldn't give me the oxaliplatin again so just hope I can tolerate the next line of treatment.  

 

 

Please pray for me in my continuing battle for my health.  Thank you and God bless you all!

Joan  

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

So sorry to hear of this horrible experience! Gosh it almost sounds like you had a pulmonary embolus almost!  Hoping you are feeling better soon!!

 

Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

Joan, this is awful.  I am so sorry you have had this horrendous experience. And I am happy that you are here to tell the tale. 

You have my most sincere thoughts and best wishes, as you move to a different treatment plan. May you not have another, traumatic experience ever again. 

I hope the radiation Oncologist can work on your bone met, and get that shrinking. 

Stay strong, forum friend. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1088
Joined: Apr 2017

My goodness, what an ordeal.  I am glad you made it through and I am sending my best wishes for better days ahead.

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Wow! That’s a lot! Sorry it’s rough going. Hoping there’s another way to continue without the severe reactions. 

Im always thinking of you, Joan, and hoping for the best. Sending love and strength.

k

Canadian Sandy's picture
Canadian Sandy
Posts: 626
Joined: Jul 2016

Sending prayers and hope you do well on the next treatment. Keep strong Joan.

PamRav's picture
PamRav
Posts: 280
Joined: Jan 2017

Of the scariest posts Ive read.  Im glad you are fine now   Thank you for sharing, Its a good reminder to slways listen to our bodies when receiving chemo  

Wishing you a good treatment plan that works wonders for you 

PamRav's picture
PamRav
Posts: 280
Joined: Jan 2017

Double post.  Wont let me delete 

Trubrit's picture
Trubrit
Posts: 5174
Joined: Jan 2013

I hit the 'Report as Inappropriate' button, and the mods delete it. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6510
Joined: Feb 2009

Prayers being said and I'm so sorry to hear that this happened to you.  You are right, it is fortunate that you were someplace that could get you help.  I'm surprised at their attitude of "just sit and wait" to see if it gets better.  Hope that you don't have this problem again.  Wishing you well.

Kim

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I've been feeling really weak and sick since that ordeal.  havent been on the computer much at all.  Been mainly resting at home have had high blood pressure, dizzy, and just generally feeling weak.  I see the pulmonologist tomorrow to see if there is still fluid in my lungs. 

I actually forgot to make an appointment with the cardiologist to check out my heart and high blood pressure. I've always had really excellent blood pressure but not since the allergic reaction to the oxaliplatin.   I'd also like to have him correct the record to show that I did not have a heart attack. 

I go to Mayo next week to see if thet can help me.  Praying for a chemo that I can tolerate and enjoy what time I have left.  It's getting really scary.  

Also I went to the radiologist last week, he said he dosn't believe the bone tumor is active and actually looks like it's healing nut there is an abnormal signal in my hip causing the weakness and possibel  muscle injury from falling last month after chemo.  he gave me steriods for the leg pain, but then I didn't sleep for 3 nights so had to stop taking it.  The pain is back but not as bad,  I have a referal to the orthopedic doctor at Mayo in addition to the oncologist.

Gog Bless you all.  

   

Annabelle41415's picture
Annabelle41415
Posts: 6510
Joined: Feb 2009

You have been through so much and I'm hoping that your oncologist will address this issue with the treatment that has been prescribed.  It's unfortunate, but they don't tell you all the side effects that you get from treatment.

It's a good thing to hear positive results from your radiologist in the active spots.  Steroids can cause you to be awake for long periods of time and that is given to patients along with other drugs to help healing.  It's hard to tell if people can tolerate the steroids or not.

Wishing you the best with your upcoming appointments.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 1088
Joined: Apr 2017

If the steroids they gave you are prednisone, be careful of the link between prednisone and heart problems.  Pre-chemo I could take prednisone without issue, post-chemo it caused serious heart issues.  

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

Went to Mayo Phoenix and the doc was awful. Were you given Avastin as well with the FOLFOX?  Avastin made my blood pressure skyrocket, and also developed blood clots. It was pulled by the FDA  in 2011 for use in breast cancer because of the cardiovascular side effects. Not sure how it is deemed safe for other types of cancer. Hope you are feeling better each day, and find the treatment that is tolerable and effective!

Real Tar Heel
Posts: 80
Joined: Nov 2019

The rads discovered blood clots on my lungs at the last CT scan, so I've been prescribed another med -- that I have to inject myself -- ugh. Docs are all saying "it can happen with cancer" but the literature says "it is caused by chemo." It makes more sense, the drugs destroy a lot of cells.

My BP was a little elevated before I started this chemo journey but it has been in the hypertension range since I started chemo. Onc never addresses it. My other doc is going to prescribe medication this week but I'm wondering if it will be the right thing if the chemo (I can't recall rn if I'm getting bevacizumab but I think I might be) is the cause. are us mCRC patients being given a medication shown to have intolerable side effects?

As I said in another thread, I'm thinking about asking the onc to cut the treatment short. The last thing I need is these kinds of side effects especially when I don't have any tumors.

myAZmountain's picture
myAZmountain
Posts: 335
Joined: Apr 2018

I asked my Onc why Avastin is banned for breast CA  but still given to other CA patients, did not really have an answer, only said that studies have never really shown Avastin to extend life expectancy more than one month. I credit all my cardiovascular side effects (sky high BP, upper extremeity DVT, ectopic beats) during chemo to the Avastin. But thats just me. In my opinion Interventional Radiologist that insert ports should be more knowledgeable about CA patients proclivity to clot more easily--mine jammed the catheter down the wrong vein and I ended up with a huge DVT--but he has a brand new Porsche so all is right with his world.

Real Tar Heel
Posts: 80
Joined: Nov 2019

wow

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