Nervous about second chemo

nadiaC

Hi everyone. I’m just looking for some support. I had an allergic skin reaction 9 days after my first chemo. It subsided with cortisone and reactine and now I’m on reactine long term which makes me drowsy and nauseous. I’m nervous about having an allergic reaction at my second chemo which is on Thursday. Also if I can’t tolerate standard of care chemo I will be disqualified from a clinical trial that I’m on. All this is triggering some anxiety and I could use some encouragement, advice, support. 

angel27

I was lucky and never had any allergic reactions. Try searching for that and you will hopefully find some help  good luck. 

Fearless

@nadiaC I'm so sorry your reaction ended up as severe as it was. Take it one step at a time. First, let's hope next chemo your body will have adjusted better.  And if the Reactine is causing problems maybe they can switch that out for something you can tolerate better.  Don't give up hope yet for your trial. They are miracle workers with the way they bob and weave to do whatever might work to keep you on standard of care without jeopardizing your health and comfort.  I'll be thinking of you with my fingers crossed.  Let us know how you fare on after Thursdays' treatment. 

nadiaC

@Fearless thank you! I needed to hear this. I’m meeting an allergist on Wednesday so hopefully they can work something out in time. I’ll let you all know how it goes. 

beachgirl

@fearless just a thought what about Benadryl? perhaps you could ask your Dr team.  I heard about this during my treatment.  Try this: 5 big deep breaths in and 5 out... repeat.  it's sure helped me with anxiety.  <3he u

Flowergirl

Hello @nadiaC... hoping your next few days go well and you get some answers. 
Sometimes, your treatment may be adjusted and given more slowly (the IV rate) or you may be give a drug to prevent or reduce the reaction, and it just depends on how severe and your situation, so ask lots of questions.
Not sure which chemo drugs you are being treated with... on a  personal note, my whole head ended up with hive / rash like bumps after one of my treatments - yes, it was a delayed reaction over a week post chemo and slowly, it went away... it only happened at the first cycles. Wishing you some comfort and know they will look after you. 

nadiaC

hi @Flowergirl and all my teal sisters. Today chemo cycle 2 was a bust. I had a strong allergic reaction to paclitaxel so they stopped the infusion to give me Benadryl and steroids. Then they restarted the infusion very slowly, but I reacted to that as well and it had to be stopped. Now they are considering docetaxel as an alternative. But the drug company funding the clinical trial I am
on needs to approve this switch. It feels pretty discouraging - I was psyched for chemo cycle 2. Has anyone else had a paclitaxel allergy? Can you share how it was dealt with? Thanks 🙏 
tagging some teal sisters who I’ve been in contact with but no pressure to reply @Bluebird @jiselle16 @kattie666 @love2run @LoDM @cbot @MarilynOCC

kastoyles

@nadiaC - no I didn't have a reaction, but at least two ladies in the chemo suite (different times) when I was did have a reaction.  One didn't continue with the infusion, the other was able to tolerate a slower drip. It's scary. I remember my first infusion where the nurse sat ready with a syringe full of Benadryl in case I reacted.  After the first infusion, they didn't seem to worried about a reaction. I'm so sorry this has happened to you and hope you are feeling better tonight. Having a delay or issue with treatment is discouraging. Keeping my fingers crossed the doctors get an alternative sorted out as soon as possible.

kattie666

@nadiaC Sorry about your experience today. I hope your team can figure something out to your body's satisfaction. I am sitting here nauseous and hungry (steroid munchies??)  and tired but afraid to eat..... don't want the nauseous feeling to last!  I have taken a tablet for anti-nausea I hope it kicks in soon! I was #3 for me today and I was nervous still.  I keep thinking it will get worse!!  Have to stay out of my head and in the present moment!  Mindfulness practice helps me.  @CountryLiving I have joined Hope Springs in Kitchener.   Thank you for putting me on to them!

nadiaC

Thanks @kastoyles for your reply and support. I also hope and alternative will
be worked out soon. It definitely seems that paclitaxel is no longer an option. I didn’t react to it in chemo 1, but I did develop
a delayed skin reaction 9 days later. It’s pretty frustrating and scary. 

kattie666

@nadiaC Everything we are going through is scary.... with the added fun twist of a pandemic to deal with on top of it all.  We are bad-ass just getting out of bed in the morning to face our days.  Stay strong and hope for the best.  Thinking of you and keep us posted!

nadiaC

@kattie666 That’s the spirit. We are bad asses just for getting out of bed. How true. I’m going to keep that with me. I hope your post-treatment days are smooth. I found after cycle 1 that eating kept the nausea away. Take care of yourself and mindfulness practice is a great way to stay in the present. You got this!

Bluebird

@nadiaC,  I'm sorry to hear your cycle#2 went sideways...it is not good but not unheard of to have reactions. I just read your earlier entry about having a reaction 9 days after your first cycle...sorry to have missed that..oncology knew of the reaction right..they treated it with the steroids and reaction.  Sometime your reactions get get stronger with more exposure to the drug..that's what my clinic nurse told me.  I didnt have any treatments stopped but I would turn beet red, flushed by the evening and second day and I took benedryl for 2 or 3 days .. It is upsetting that you you didnt get through your 2nd.  Your oncology team is working hard to figure out the new plan..as hard as it is stay positive..be kind to yourself...were all here for you.  For sure let your team know how you are feeling and how you are doing...

Bluebird

@kattie666, congrats on cycle #3..sorry you're feeling so crappy with the nauseous feeling...hope your meds are working for you...if they are not please let your team know as there are other drugs...my nausea seemed to get worse when I restarted chemo after surgery...they prescribed this drug that I would take the morning of chemo and the day after...only 2 pills but made a huge difference..sorry dont remember the name of the drug...hope you start feeling better..

kattie666

@Bluebird Thank you for your thoughts.  I am up at 4:30 this morning with nauseous feeling again.  I am taking a prescription for it that has been shortening my sleep!  It is working though!  Just more naps while I am on it.  Not a bad thing!!  lol  I also get nauseous due to the cysts on my liver and when my depression is bad.  Hard to say what is causing it, the last round of nausea came two weeks after round 2 so that one was probably not the chemo!  My body just has so many challenges!  My surgeon was quite fascinated with how my liver felt.... she said "it feels like bubble wrap"!!!  This thrilled me because I am the bubble wrap grandma!!!!!!  Love playing with it with the grand babies!!

Bluebird

@kattie666 I do hope the nausea goes away so you can feel near normal..its hard enough going through all the things we have to and then to have nausea as well..stay strong..be kind to yourself..and bubble wrap..is always good .  

Bluebird

@kattie666..what is Hope Springs?  We have a centre here that's called Wellsprings...its a non clinical centre for adult cancer patients that provide art and music therapy, yoga, etc..is it the same?

kattie666

@Bluebird It is a help center for cancer patients.  Sounds similar with group counselling too.  Right now it is on line due to Covid so easier to participate!

Bluebird

@kattie666..our centre is separate from the psychosocial spiritual centre..but I would say to everyone to use all the resources available..

Fearless

Hi @nadiaC

I'm so sorry to hear about chemo #2.  That I can relate to as I had similar experience with Paclitaxel. 

At the outset of the diagnosis I was attached to Princess Margaret in Toronto.  My oncologists' plan was to do the surgery, followed by one round of Carboplatin + Paclitaxel and if that went off with no hitch install an abdominal port for  future infusions that would really focus the effects of the chemo on my cancer.  Sounded great at the time. So day 1 of chemo I attended the chemo clinic at PMH  late morning having driven 3 hours to get there (I'd permanently moved to our farm at that point).  They explained, along with infusion of some saline and drugs to prevent side effects they would start with an infusion of the paclitaxel, give me an hour break and then proceed with the carboplatin.  They hooked me up and started the IV's.  All was going just fine so I suggested my husband go find us some lunch while they administered the paclitaxel and we could eat together during my break so off he went.

Well, they started the paclitaxel drip and by drop 2 (about 30 seconds) my blood pressure torpedoed, my chest, neck and face went beet red, muscle spasms in my lower back and legs set me screaming to get up off the chair, and then I started blacking out. This all in a minute. Thankfully the nurse who was with me stopped the drip immediately upon my call out that something was wrong.  In any event I was rushed up to acute care once they determined I wasn't having a heart attack(nothing more unnerving than seeing them wheel over the crash cart LOL) where I was put on a saline drip for 7 hours while they flushed it all out of me.  My husband and I now laugh at him arriving back with Swiss Chalet in tow to find no one in my chemo chair and almost having his own heart attack thinking I'd passed away!

7 hours later we were on the road back home where my oncologist called me the next day to inform me that my reaction was so severe they couldn't even attempt another try with paclitaxel or any derivative of it so now the port infusion was out of the plan. That was really disappointing, not unlike your fear that your issue will cancel out your spot in the trial.  But gal, what happens, happens and all we can do is look forward...I truly believe that.  I did go back the next week to try out the carboplatin and despite shaking like a leaf waiting for all hell to break loose that went without any incident at all.  And for the olaparib trial almost two years later, no one gave a thought about the paclitaxel.  All they wanted to know was whether I was platinum sensitive...meaning how good was my response to the carboplatin and that one was a miracle worker for me.

My next chemos were transferred to the Kingston cancer centre as the travel back and forth to Toronto would have been a killer in itself. There, at the direction of my Toronto oncologist they gave me a combination of the carboplatin and another drug called gemcitabine which is often called gentle gem since there is are minimal side effects although it can brutal on your veins. I quickly learned to inform the nurses exactly how many drips of saline to every drip of Gem was appropriate; my first awakening of the need to be your own and strong advocate.   In any event at the end of cycle 6 I was in normal CA125 range and stayed that way almost two years before we discovered my recurrence.  By then, olaprib was being tested for a number of different purposes, one of which I qualified for and have now, almost another two years later been maintained on that drug.  

So, although disappointing to have Plan A set aside, everything really did work out well in the long run.  Right now the efficacy of the olaparib is waning so I'm likely in for some surgery in September to remove a couple of nodes as well as fix an annoying hernia I was left with.  That will buy me even more time before we again look into a need for chemo.  When you think about it I may have had a recurrence but I'm coming on to four years since diagnosis and still on that first recurrence with no chemo yet needed.  And as they say, the longer you go between chemos the more effective it is when needed again.

I know it's all so scary.  And I know how frustrating it can be when your expectations aren't met.  But really the only expectation we should have is to live as long and as healthy a life as is possible...and there are lots of paths we can take to get there. No journey is without bumps.  It's the end result that's important.  

So hang in.  Draw on your inner resilience. And know we're all rooting for you.  

nadiaC

@Fearless thank you so much for sharing your story so openly here. It is a source of encouragement and strength for us all. 

jiselle16

@nadiaC I didn't have any allergic reactions to my chemo. I have heard of other women having some allergic reactions...so you are not alone! How frustrating and scary that must be! I'm sure the doctors can figure out a Plan B for treatment. Cancer is a roller coaster and you never know what's around the bend. After this bump in the ride, I hope it's smooth sailing from there. You got this!

CountryLiving

Hello @nadiaC Sorry to hear about your reaction to your chemo. It is very unnverving and scary. I too had a reaction and now labelled allergic, hypersensitive and anaphlactic to taxel. My reaction was scary but not as bad as @Fearless. My first chemo was in January and a week later I broke out with a body rash and skin shedding, like a sunburn peel. I was referred to an allergist but did not get in before 2nd chemo. As soon as my second chemo of taxel was started my neck and face turned red and I had severe trouble breathing. I was so doped with benedryl I could not process what was happening but my husband saw and ran to get a nurse. They immediately stopped the taxel drip and then gave me more benedryl and epinephrine. I was so drugged and did not want to start the drip again but Dr and nurses assured me this happens often and so they started the drip very slowly. It seemed to work. I slept through because of the side effects of benedryl and the steroids.
The third chemo beginning of March I was scared as to what would happen next and so my oncologist cut back my taxel by 20%, gave me still more benedryl and steroids and did a slow infusion. They started off with a 25% taxel infusion, then after 30 minutes of no reaction they increased it to 50% and then half hour later put me up to full taxel infusion. Of the 3 chemo treatments it was the best one. I made it through that chemo! I was given a great nurse who understood why I was so anxious to be there and watched over me. Kept me distracted and had me laughing. The nurses do know so much. I too travel to PMH where my trip takes 2 hours one way. I am done with all my chemo now. Did not think at the time that I would be able to make it. My CA125 is normal now and there is no evidence of disease. I empathize with you as you go through Chemo and treatments. It is tough but I know you are tougher! We are here to support you in any way. Hope my story will encourage you. 

nadiaC

Thank you for sharing your story @CountryLiving. I am so grateful and impressed by your courage and resilience. I had a skin reaction 9 days after my first chemo and then reacted right away to the paclitaxel in my second chemo. When they restarted the infusion at a slower rate I reacted again. So now my doctor thinks paclitaxel is too dangerous for me and we are going to try docitaxel on Wednesday. I hope that I tolerate it well. I’m so pleased that you are NED and with normal CA125. Thank you for your encouragement. 

nadiaC

Thanks for your support @jiselle16! Here’s to smooth sailing 💪🏼🤞

CountryLiving

@kattie666 Glad to hear you connected with HopeSpring. I attend the Zoom meeting for women on Tuesday morning. Will I see you there?

kattie666

@CountryLiving I do plan on being there again today!  

nadiaC

@Fearless @CountryLiving @jiselle16 @Bluebird @kastoyles @Flowergirl @angel27 @kattie666 - after your supportive and kind messages last week, I wanted to follow up and tell you about my treatment yesterday. I was able to complete 'cycle 2' (only 1 week delayed). Instead of paclitaxel, I received docetaxel followed by carboplatin. In addition to substituting the chemo med, my doctor put me on oral cortisone (20 mg at 8 PM, 20 mg at 2 AM) the night before, and then I took an oral antihistamine the morning of treatment (blextin) and received IV Benadryl right before the docetaxel. The treatment nurse was really kind, careful and prepared, and a nurse from the clinical trial I'm on came and sat with me for the first 30 mins of the docetaxel treatment which helped a lot. Today is just day 1 post treatment and I'm feeling alright but still on steroids. Thank you again for being so encouraging and for helping me see that this is a journey with blips, bumps and humps. 

Bluebird

@nadiaC. 😊🥳.I'm so glad that you were able to receive your 2nd cycle and that you did well.i knew you were strong and a fighter to get through this..I'm so happy..its discouraging enough to have your life turned upside down because of cancer but then to have a bad allergic reaction to your treatment has to be disheartening...but I'm so glad it went well for you  and..as well that the health care team was really supportive for you...I hope these next 3 weeks now you feel well and do well...and thank you for keeping us updated...I've been thinking about you and your treatment..

nadiaC

Thanks @Bluebird I didn't mention it in my earlier post, but I am self-isolating in my basement bedroom for the next 7-10 days because my 5 year old son has cold symptoms. Sore throat, runny nose, sneezing. He and my husband went to get COVID tests today as a precaution. We decided that since my immune system will be weak following chemo, that I should remain away from the family for a bit. I'm hoping the chemo side effects will be mild and that I can catch up on TV shows, mindfulness practice and journaling. 

Bluebird

That's not a bad idea to isolate..and that's nice that your family is  so supportive of that. ..not too bad that you have some time now  to catch up on a few things.😊...I hope all is well though with your son and husband...take care of yourself.. ❤