First chemo session
On Friday, March 4th I went in for my first ever chemo session of Taxol and Carboplatin. I was a "fast track" on that day because my labs were done the previous week. Anyways after the team got me settled in and explained all the procedures that would be happening, then I put my sig on the forms. I just thanked God I was lucky enough to have a support person with me cause my anxiety was thru the roof.
Not too much of an issue as the steroids and nausea bags infused, but that Taxol! All I remember is within about 10 mins into the infusion - felt like a prize fighter hit me right in the center of my chest. I lost my breath, my heart started to race and my lungs were just frozen. Then this burning in my chest started spreading down to my abdomen and back up to the top of my head with such force. It was happening so fast that I could only shake my head and fling my arms. The nurses came as quick as they could & the doctor ordered everything disconnected. They gave me O2 & started taking vitals until my body settled down. Then about 30 mins later they lowered the dosage to start me back up again and I was fine. The next day, Saturday, I was full of energy and got lots done around the house and even went for a quick hour visit to the grandkids.
Today, however, Sunday - I woke up a mess as my stomach was heavy & rumbling - not quite nauseated but not settled. All day I have been just barely moving, trying to eat bland and take in fluids. The nausea pills have helped stave off any severe symptoms, but I feel something trying to brew. My feet and legs have been heavy and hurting all day, not sure if Tylenol would help since it might already be bone marrow issue. Ugh. And my teeth are starting up with a little pain. Well any feedback on similar experiences is greatly appreciated.
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I did okay with the taxol except when they dripped it too fast--a constant battle. On my last infusion after we waited an hour to get in, they dripped it way too fast plus somehow forgot to give me an anti-nausea med. Another patient (not a nurse) alerted my husband that I was staggering. Ended up on bathroom floor screaming in pain and nausea, plus allergic reaction I guess--red face. Almost called 911 to get real care. Nurses belatedly administered drugs and I recovered. Re home, lots of pain day 3 after and sporadically. Used opiates (one oxycontin or one tramadol), advil, tylenol, or heating pads depending on severity and my best guess where it was headed. Zofran for nausea, with very occasional compazine. Some days were no appetite or just Ramen, Saltines, Campbell's chicken noodle soup, Coke, and ginger ale. Branched out to Spaghettios almost every day. A little chocolate. My PA said based on labs that my diet was excellent; spouse and I started snickering in the room and had a belly laugh afterwards about that. Exercise started great and dropped to barely getting off the couch and 15 hrs of sleep a day. It's getting better; my chemo ended Feb. 2. Walked 15 minutes yesterday. My body thermostat is gone--hot and cold at the same time. Pain is much better. Nausea is better but still present. Dizziness is better. Teeth are not hurting at all any more. Mouth sores were not often but weird, not always painful; all gone now. Dry mouth was very bad first few nights after each chemo. I drank 5-6 glasses of water each night; could not get enough. I hardly experienced that metallic taste thing at all, but lemon drops or lemonade cured it. I iced to avoid neuropathy and did well. One thing is my onc and PA said that I would feel bad starting Friday night after a Wed. chemo and that it would be bad for a few days and get better. Instead, it did not start until Saturday, was bad for a few days, and then hit or miss almost all the way until the next chemo. Sometimes I felt pretty good, but sometimes terrible. For me it was quite unpredictable. It will get better.
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We walked into chemo one time (session 4?) and they said to go home because my ratios were off. That one time I didn't even freak out. I said, "I'm not leaving. I literally just came upstairs from seeing my gyn onc and she said my labs were good." I waited an hour. My spouse texted my gyn onc and after some delay she called the nurse and said "Do it". Much more delay then sudden flurry of activity. Bottom line: I got the chemo but yet again they tried to drip my taxol too fast to make for lost time, because as the chemo nurses like to say, "I leave here on the dot of 5 o'clock no matter what". In many ways I hate my cancer center, a few kind and professional souls excepted.
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That is what I get for not living in a major medical center. Austin is fun & all but we didn't even have a med school until a few yrs ago.
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It is so overwhelming at times; hang in there. They will do your chemo once they think it's safe. My faith left the building several times; many tears. So much pain and nausea. The staff were so cruel at times, for example one time telling me I couldn't use the nearest bathroom. I tried to make it out by the elevator but ran and used the close one anyway because I just couldn't make it and did not want to go on the floor, full of fluids from the iv, apologizing pitifully. I was worried that maybe the close one had already been cleaned for next day. Nope--the nurses just wanted to leave early. So unkind. So humiliating. So unnecessary. Zero compassion for me the patient facing death head on and my dear husband. Karma will come back to them. They would try to drip my Taxol too fast or rush so fast they forgot to give me a nausea med--my reaction was horrific. (I ended up on the bathroom floor in agony & we almost called 911.) I just don't understand why cruel and uncaring people would do oncology care.
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Sorry you had such a bad reaction! I also had carbo and taxol. I will just share my routine, I am 3 years NED, stage 1A, grade 3 with mixed serous and clear cell. The mornings of chemo I had to take two large steroid doses a few hours apart( pills) The place I went is a cancer treatment center, and fairly large, that is also where my GYN/onc Dr is. The nurses there are very well trained and caring. That makes a big difference. Arriving at the facility quite early in the morning, they did lab bloodwork. After a little wait I went to the infusion room, big but welcoming ! Lol. My infusions would start, I had a port. They would check my vitals often at first. My infusions lasted about 5 hours. We would have lunch there. The nurses gave me ice paks for my hands and feet and as many warmed blankets as I wanted. I could get up and walk around, go to the bathroom, get snacks they had there. My infusion bags were on a portable thing. Then I would get the little Neulasta onboard thing stuck to my side. ( it is timed and gives you the shot in I think 24 hours?, then you take it off) Next day I always felt really good, leftover steroids! After that I would feel yucky for about 3 days, gradually better and by the third week I would feel almost normal just in time for the next treatment. Also I had to have a blood test once a week in between treatments. Also if you have Neulasta take Claritin with it. The onboard thing is so you don’t have to make a trip back to the clinic the next day for the shot.
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To be fair, the infusion room in Austin is bright and sunny, lots of windows; the recliners are hard but okay; and they do provide limited unhealthy snacks and blankets so that's something. Surprised they didn't have ginger ale or jello as a hospital would.
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Thank you. I get so sad. Then angry. Then better. Repeat. I am so disappointed in my options in Austin as far as the center. I'm trying to keep my eye on the ball. Often I feel like they expect us to be eternally, almost pathetically, grateful for any scrap of care we get, even mediocre or bad, despite the fact that it's their chosen profession and we pay for our care. (Oncology is big business.) Before cancer, I never went to say my dermatologist or my eye doctor feeling just grateful that they would even see me. Why is oncology supposed to be different? Because we often die and it's just too hard for them to deal with us? Because we have a lot of questions when our lives are literally hanging in the balance? If I get nothing else done in the time I have left, I hope to shake up this system and achieve/demand more compassionate care, for us, a very vulnerable and scared population. I have met some excellent and kind providers (doctors, nurses, staff) along the way, and I try to remember to thank and gift them, but I'm not letting the unkind ones off the hook.
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HFTG61
I had a similar experience as yours with extreme breathlessness but on my final chemo #6 not my first. I hesitated to bring it up to the nurse because I was hoping to power thru and be done with chemo That was not wise because these reactions should be dealt with immediately. It is frightening. I was very scared! They stopped my infusion per Doc gave me steroids and started up slowly. Like you, it went much better. I am so glad you had someone with you! I know they will be watching you closely going forward. Don't hesitate to bring up reactions.
I remember feeling nausea and dizziness in the mornings after treatment. I also had a metallic taste off and on. I took anti nausea/anti anxiety Lorazepam and that helped but it also made me sleepy. I didn't know if my heavy legs came from the meds or the chemo. I walked slowly and cautiously. I received Neulasta onboard after every treatment and taking Claritin really helped. I took it for about 5 days after the shot engaged. I had face flush two days after treatment and used cold compress. I ate whatever I craved. I drank white soda at treatment and sometimes took a snack treat , too.
I am past chemo and external radiation and brachy about 6 months now and feeling good. I just want to encourage you will get thru this and come out the other side.
We are here for you! ((Hugs))
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Springer Spaniel Mom,
I am reading your posts and appalled at the lack of compassion you have endured thru treatment. I am so sorry! My experience was totally opposite. I was indeed grateful for my care because the infusion and radiology staff fostered those feelings with their sweet ways and understanding. I did gift both groups when I finished each treatment. I actually missed them, felt kind of lost for awhile.
I am so glad you have encountered an element of caring staff along the way. I cheer on your calling out those who do not seem to care about our struggle to live or think this is 'just a job' to clock in and out at 5!
Despite my having great caregivers and doing well, I still occasionally feel angry, too. I often feel sad and hopeless then I rebound like you. I am so thankful for that spirit within us that rebounds. I find reading the ladies on this board helps encourage and inspire me. I hope to help and encourage someone else.
May your Today and each today ahead be better.
((Hugs))
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Hi, Ladies
Wow…..this thread is tough to read….what you’ve gone through SSM is unacceptable. Horrible. Uncivilized. I could go on…..I am so, so sorry you were treated that way. And Austin is not exactly the “back woods!” Cancer center, or no, there is no excuse for the treatment and lack of care you received. On the one hand I’m scared for newbies to read this thread because it will frighten them so, but on the other hand it’s important to read it so they will no exactly what NOT to put up with!
Like Lyn, my experience was completely different than yours. My chemo was in a treatment room in my GO’s office, and with the most kind, loving, fabulous, chemo nurse ever. I don’t know how you got through it, SSM! You’re one tough cookie! 😊
I’ve written this here somewhere else, so sorry for the repeat, but my instruction to my husband was, “If something goes wrong I will text you ‘911!’ DON’T text me back! Get up here ASAP! And don’t come in the door asking permission to see me! Announce why you’re there and keep moving!”
And HFTG61, I’m glad you’re OK! That was so scary! So glad they made it OK and you could continue! I thought that I was pretty darn sick with chemo. My experience was a lot like yours.
Prayers for all of you here. Love, too!
❤️, Alicia
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The chemo class nurse told us to eat with plastic utensils to avoid the metallic taste, that some people can't get rid of it once it starts. I never had it during chemo, but now when I have my CT with contrast, I have it for about a week. Ick.
I'm so sorry to hear of the difficulties you all had. My first carbo/taxol was low dose while I was having radiation, but even at that, they started it slowly and watched for a reaction, which I fortunately didn't have. I just hate to hear about ladies being rushed through and treated so badly! Makes me even more thankful for our cancer center. We are a much smaller town than Austin, but were fortunate to have people with the foresight to build a wonderful facility.
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