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update on odd reaction

kdkjoshi
Posts: 7
Joined: Nov 2010

Thanks everyone for their ideas. Its been an interesting few days. After not getting any answers from my onc. on Fri my husband took me to the ER. When I checked in my blood pressure was very high 206/168. That sent everyone into a panic. My swelling didnt matter as long as I was getting air.
all kinds of cardiac tests, another 2 contrast CT scans looking for clots.- neg thank goodness. meds to force the BP down, and then they looked at the swelling. The doc called it Linebacker neck and neathorthal eyes. I had to pull my forhead up to see and sign the paperwork.
Benedral and steriods to bring the swelling down and then after a full day, sent me home with more to take over the next 5 days. The ER doc was much more responsive and went through my meds and identified the Oxi as the propable cause.

Totally out of it Sat and Sunday. Monday my onc. appointment and next round of chemo.
The onc says it would be really unusual to have a reaction almost 2 weeks out. So she wanted to continue. Was willing to drop the dose down 10%. I warned her that I would not be calling her this time, I would go directly to the ER. If any reaction happens again, I want a doc to see it.
Ive been refered to a mental health therapist to assist with my handling of the side affects. Dont know what a therapist is going to do about my blood pressure, blisters or swelling. The onc. kept reminding me that today is my 1/2 way point and I should be celebrating. OK but whats going to happen to me the 2nd 1/2 of treatment if this is so hard. I am working about full time, but only because I have a very understanding boss. This was her guide to how bad the side effects are. If im working, must be tolorable.

I am looking for a second opinion.

The shingles idea was a good one, but not whats wrong, the blisters on my head heal between treatments and appear during infusion. So have to be a reaction. benedryl helps but not stops it.

As you can tell, Im a bit frustrated.

Dont understand the very high blood pressure. I take meds for slightly elevated BP. but its never been this high. I think it is contributing to how lowsly I feel right now. The ER doc did say that anything above 200/180 is an ER visit. Im skirting those numbers all day.

Again, thanks for the support and ideas. On to a second opinion.

Cheryl

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Wow what a time. Yes the oxi is a horrific drug for some. I have reactions right at infusion time and they stop them with the steroids and benadryl. Also you should know that the elevated blood pressure is another side effect of the chemo. People who have never had elevated BP will have to go on meds to control it, so, if you already have high bp then I would say that the chemo is causing a significant increase.

Definitely get another opinion. I myself would not stay with an onc who was so nonchalant about these serious side effects. Thanks for updating us and I hope you're feeling better. Good luck

mom_2_3
Posts: 965
Joined: Nov 2008

Cheryl,

Reactions to Oxali do happen. Some mild and others more severe. On my 7th infusion (2 infusion after my liver resection) the drip had just started. I started to feel a way I can only describe as "weird." I started to get a really metally taste in my mouth. I asked my sister to get the nurse and that's all I remember until waking up 45 minutes later. I had gone into anaphylactic shock. The doctors told me that I went into cardiac arrest as they were unable to get a pulse. When I came to I was pretty much incoherent. I had had chest compressions done and had 2 injections of adrenaline.

Later on my sister told me that there had been no less than 15 people around me when this happened. When I became stable they moved me via ambulance to NY Presbyterian Hospital where I remained in their intensive care cardiac unit for 2 days under observation. That was very weird as I was the only patient on the floor that was actually concious.

Doctors at NYPres were convinced that either I had a heart defect upfront of that I would have suffered long-term effects from the event but visits to a cardiologist and tests show that my heart is ok.

My oncologist discontinued the Oxali and dropped the Leucovorin as well as she said they woudln't be able to determine which is the one that caused the reaction but I have a feeling it was the Oxi given the metal taste in my mouth immediately prior to falling unconcious.

Good luck with the rest of your treatments.
Amy

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

OMG, the blood pressure thing I had as well, it was 250/165 and they weren't WORRIED about it!!! I had to be most forceful, okay, I admit, I yelled loudly, I WANT BLOOD PRESSURE MEDICINE NOW!!! And then I got some (I was in the hospital).
Now finally after I'm off of chemo for two months and on 10 mg of blood pressure medicine it's normal. My regular doctor, said, well, it won't be the blood pressure that kills you, the cancer will get you first. (yes, I'm stuck with him due to HMO thingie), don't let them screw you on the blood pressure medicine like they tried to do to me. They weren't concerned in the least, HELLO??? High blood pressure equals strokes, no thank you!!!
You go for that second opinion, will be thinking of you and a prayer or two your way!!
Winter Marie

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Ive been refered to a mental health therapist to assist with my handling of the side affects?????? Seriously?? they did?? I don't have tolerance for that kinda bs from an oncologist. I do believe if mine had said that I would have lost it and he definitely would not be my doctor any more. Oxi is one scary, evil, vile drug. I have no doubt what happened was due to oxi.

Blood pressure? Mine was actually very very low when I was on chemo. Like 80/40

10 percent may actually be enough- I know I was usually ok for at least one infusion after a reduction. But it didn't last- and you know, 5-6 is generally the limit before reduction. Nuts to your doctor for thinking you should be celebrating with being half way through! I know around 6 or 7 before they started cutting mine I was in tears thinking of more chemo. I would have rather gotten kicked in the head by a horse and lost all my teeth in a bar fight, then have more chemo.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

but you're not. You are right to feel frustrated with your onc and with the whole shity deal. I'm glad you are going to get a 2nd opinion. I'm very curious to hear what is next.

Hang in there.

Roger

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Goodness! I'm certainly praying this can be gotten under control. Those are some crazy blood pressure numbers!

*Hugs*
Gail

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

So very glad that your husband took you to the ER and that they were willing and able to help get your probs under control.

I heartly agree...get another opinion on the situation and also get another onc...one who wants to hear from patients who have any kind of unusual situation come up...even if it might be unusual for the treatment. After all we are all different and any combination of things can cause a differnt reaction to pop up.

Hope that you can get the BP in the good range and keep it there.

Hugs,

Marie who loves kitties

AnneCan
Posts: 3692
Joined: Oct 2009

You have gotten good comments from more knowledgeable people than me on this subject, but I wanted to say I am sorry you had such a rough go.

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Fire the Onc

Kerry

jararno's picture
jararno
Posts: 189
Joined: May 2010

I just love how the nurses and Oncologists seem to think that it is all in our heads! I never got the referal, but I was given a prescription of something to help me relax! I refused to take the medicine! ( Sorry I kept vommiting during their nasty treatments! ) I already take Zoloft for depression not related to the cancer and blood pressure stuff. I had warned the Onc. that I am one who has odd reactions to meds, but they don't listen!!! I somehow made it through all 12 Folfox treatments with a severe reaction on number 11. Of course they said it couldn't be their poisons and blamed it on a Dye Study that I had the day before! ( I had the dye study because they refuse to infuse unless they get blood flow)

A second opinion would be great. Hope you don't have to go to the ER again. The blisters sound nasty.

Don't let them play mind games with you. You are not overreacting! You are reacting to the crud!

As to celebrating, my Onc. also seemed to be big on telling me that I was 1/4th of the way through or whatever like I didn't already know that!!! Maybe they think it is encouraging???
You know the old "glass is half empty or full" crap! Each person deals with his journey in their own way mentally and physically. Don't let them get you down!

Sorry to rant, but I hate when we are treated like idiots!

Go with your instincts!

Hope you are feeling great!

Take Care,

Barb

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

We are mind and body,

I will see my mental health therapist tomorrow for an hour before I get the
5fu bottle disconnected. I did not ask for her, but my onc also suggested it.
Sometimes wife comes along, sometimes it just. Must have seen her 7 times see treatment started.
I don't always see or feel a benefit. But deep down think it cannot hurt.
Its for free here, she is well meaning, we talk through whats going on.
I like to articulate what I am feeling and its different to talking with wife and
friends.

Just some thoughts, If you give it a go, it may help you cope with some of the emotional
challenges of cancer. I am accepting all the help I can get. Did my second round of hypnosis today. Also for free and I feel really relaxed.

Goodluck with the sideeffects.
Pete

jararno's picture
jararno
Posts: 189
Joined: May 2010

Sure wish our care was free! I think one reason we often stay with Docs we don't like is because we have to pay for our medical care here in The USA. Actually right now my care is "free" ( after my health insurance payment of $400 or so a month ) because I met the catastrophic level of $5,000 that I had to pay out this year. When January rolls around it all starts over and I will have copays and deductibles again. Each insurance is different and many do not pay well at all.

I am glad that you are able to get care that helps. My mental health therapy was not related to cancer and was totally worthless. I obviously had a bad experience. My brother sees a therapist and it really helps him.

Hypnosis sounds interesting.....Does it stop nausea and gastro troubles? I was hypnotised once as an experiment. It really scared me at the time as I apparently am easily hypnotised!!
Let us know how that is going!!

Have a Great Day!

Barb

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

You surely should get a second opinion or even third. This doctor of yours seems to take his job too lightly. Your life is in his hands. Can you honestly say this is who you want treating you. Get another doctor before your next infusion if possible. Good luck.

Kim

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