Starting chemo August 2017 - would love some moral support!
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First infusion was wed, my day 2 Thursday was awful, I had an allergic reaction to the Lunasta shot that sent me to the ED AST 226 and ALT 206, fever, chills, HA, dizzy, vomiting, diarrhea, dehydrated SOB, infected port, and sleep apnea! On top of that neuropathy and I thought that was more for Taxol, not Taxotare. They had to stop that infusion, give me Benadryl and run very slowly. All I've done is sleep and pooo. I'm so scared and feel alone because I live alone. I am so terrified.all I'm doing right now is drink some water when I wake up. And walk so maybe that'll help the neuropathy. My MO said not to ice my feet. I may buy those booties after all. It really hurt
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HaileysHooters posted a nice list of helpful items and ideas found on page 2 of our thread
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Gingernurse: "I had an allergic reaction to the Lunasta shot" Sorry to ask, but was it a neulasta shot? I personally got a Neulasta shot the day after day 1 infusion. As for #2, I had bad SE with perjeta even though I was on the braty diet but made sure to take imodium. Told the nurse and she wrote me a prescription for Lomotil. My #2 just reduced to one trip yesterday, day 9 of cycle. Hope this helps.
P.S. do really hope this works but your SEs were pretty severe. Big hugs.
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yeah, it's been awful. Today is day three, my side hurts so bad I put a lidocaine patch on hoping it would help. I just went down to pee and ended up just dry heaving some water I had a about 30 minutes ago. I'm taking the zofran now. I hope it helps since it's a dissolving med. this is so much worse than I thought it would be. I never ever got sick except for bladder infections! I had the flu in 1999. That's it.
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gingerNurse are you taking claritin to help with the nulesta? I've heard it helps, but I haven't had it, so can't say for sure. I'm so sorry you're having these SE, it does sound super scary. Since you live by yourself, do you have anyone checking on you?
Taxotere & cytoxon ladies - I'm not getting nulesta, my MO is hoping that I'll be able to avoid it. But I'm somewhat concerned and think I should get a lab followup before my next scheduled labwork - which is directly before my next infusion. My MO doesn't feel this way. Should I push this or trust her? Also, my throat is really sore. I assumed because I didn't have the nulesta I wouldn't get any flu-like se, but this feels like a flu or cold sore throat. I'm sipping green tea and eating Popsicles nonstop.
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Gingernurse - have you been back in contact with your MO to let them know you are still having so many issues? Did they advise you to take Claritin? I did have my first Neulasta injection this week and was advised to take a daily Claritin for one week. I have not had any bone pain so far. Does your cancer center have a social worker? If so, they may be able to help you arrange for some in home assistance. I'm not sure what is available where you live, but the social worker at the center I go to has been very helpful.
Can someone who is using the baking soda/salt/water mixture post the ratio you are using to mix it? I know I saw it posted but can't find it now. Appreciate it.
Hope everyone has a lovely day!
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SweetP - after I read what happened to you I will not play with dogs again. Mine won't be rough but we have many small dogs around my neighborhood they all like to play together.
My second infusion went well I just hope today is a not a bad day. By the way I complained about heavy feet to my nurse she explained to me that is part of bone pains. So I can take Advil.
Tea - I use 1/8 of salt and baker soda mixed with one cup of water. I mixed mine every time I use.
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gongernurse - I take Claritin on the day of chemo then I take it the next five days. I didn't have problem except my feet felt heavy now nurse told me to take Advil with Claritin if they happens.
If you feel sick call your doctor they are 24/7 on call.
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gingernurse, that sounds miserable, I hope you are feeling better soon! I think Paulette and teaspoons make a really good point.... if you are still havjng so many side effects, please call your dr and let them know! They cant help if they dont know whats going on, and someone will be available 24/7. Check your instructions for calling the dr - I know continued vomiting & inability to take in fluids or ice chips were on my list to call about.
I was given the long acting IV zofran (I think its called Aloxi) during my chemo on friday, and told to start my zofran tabs at home on sunday morning. I have compazine to take in between as needed, even during the first 2 days. My dr told me its way better to prevent nausea than try to get it under control, so i took the zofran pretty much eveery 8 hours from sunday thru day 5, and took the compazine if my stomach was at all iffy feeling (which was pretty often day 1 to day 4....EDIT I took the compazine every 8 hours if my stomach was iffy, in between the zofran tablets... NOT every time my stomach felt bad. Yikes, I wrote that badly first time!
Thinking of you & sending hugs!
Willow
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gingernurse, that sounds miserable, I hope you are feeling better soon! I think Paulette and teaspoons make a really good point.... if you are still havjng so many side effects, please call your dr and let them know! They cant help if they dont know whats going on, and someone will be available 24/7. Check your instructions for calling the dr - I know continued vomiting & inability to take in fluids or ice chips were on my list to call about.
I was given the long acting IV zofran (I think its called Aloxi) during my chemo on friday, and told to start my zofran tabs at home on sunday morning. I have compazine to take in between as needed, even during the first 2 days. My dr told me its way better to prevent nausea than try to get it under control, so i took the zofran pretty much eveery 8 hours from sunday thru day 5, and took the compazine if my stomach was at all iffy feeling (which was pretty often day 1 to day 4.
Thinking of you & sending hugs!
Willow
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kritti, i'm also on cytoxan/taxotere.... doing 4 rounds spaced 3 weeks apart, first on fri 7/28. My dr scheduled me for labs the following friday (day 8, which was yeaterday). They ran the labs stat while I waited. White counts were quite low, so I kept the presxheduled appt for neulasta injection. I go in for another injection sat and sun, then recheck CBC on monday morning. If still low, i already have an appt for another neulasta shot. Since my labs were so low, my MO scheduled me for labs earlier after the next chemo session - on weds day 6 - with neulasta schedulwd that day and thurs.
Nadir (period of lowest cell counts) for the drugs:
Taxotere (red and white blood cells) - day 5 - 9
Cytoxan (red & white blood cells and platelets) - day 10 - 14
Recovery for both is day 21, so checking it right before your next chemo checks whether you are in good shape to have the next round, but it seems odd not to xheck your labs during the low point to see if you would benefit from a neulasta shot or something else.
I was told to check my tsmp twice a day until my counts come up. I have a tiny scrape (puppy nails 🐶 - smaller than the end of a pencil eraser) that is a little slow to heal and has a tiny bit of pink around it, so my MO said to continue with the Mupiricin antibiotic ointment 3xday, and she gave me a Rx for antibiotic tabs. I'm to start it if my temp goes up 1 degree over the last reading, even if its not an actual fever (i double checked to make sure). Otherwise, she said if I have an actual fever this weekend and call the MO covering for her, he'll have to send me to the ER, and once they check my labs with a real fever, theyll have to admit me.... yikes!
Have you already received a neulasta injection or has it been discussed at all? Your situation may be different, but it may be worth asking your MO to talk about the expected nadir for your treatment and why s/he doeant xhexk blood counts during the expected low point.... maybe s/he has already given you something to stimulate cell production.
Keep asking till you are satisfied with the explanation, and its always ok to let MO if you are uncomfortable with the treatment plan and would like to have labs checked!
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Good morning everyone!
Glad to hear we are all making progress, even with the obstacles that seem to come up. Gingernurse, I hope you have a better day today.
Today is Day 3 after first infusion. Yesterday was ok. I felt a little tired and sluggish, but took it easy. I had a pretty good appetite (I am thinking because of the steroids which are also making my face and feet swollen). I took another dose of the steroids this morning and went for a long walk. I am a little worried about how I will feel tomorrow without the steroids, but am taking it one day at a time!
I have been rinsing my mouth with salt and baking soda after I eat to try to prevent any mouth issues. I am also still trying to drink a lot of water. The zyprexa has been pretty good at conking me out to sleep through the night.
Stay strong all.
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kritti, I also have an irritated throat.... I first noticed it around the same time my tongue and mouth felt like I had burned it and my sense of taste changed. When I really focus on the sensation while swallowing,it is more the very back of my mouth/top of my throat rather than being a typical sore throat (had strep a bunch, so its a familiar feeling). I am keeping close tabs on it (and my temp), but I think it is part of the sore mouth from chemo killing the quickly growing cells rather than from an infextion or flu. If im right, it shoild start feeling better when myouth does.
I mix 2 tsps bakimg soda + 1 tsp salt + 2 cups water and store it in a glass water bottle. Make feesh daily. Give it a good shake before using it. Use after every food or drink (not counting water). When my throat got tender, I started gargling with it too.
Hope it feels better quiqckly!
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Gingernurse,
Did your nurse (education meeting?) give you anything in the way of a folder full of information including social worker's numbers, American Cancer Society links, etc.? I was reading through it and apparently, there are volunteers who will run errands for you, pick up prescriptions, groceries, etc. If the ACS can't hook you up, maybe the nurses can help you find some assistance. It can be difficult doing it all yourself as you know. The sheets I got also mentioned people who would ferry you around to appointments and or shopping, whatever. I work in a setting where I've actually met them and when picking up prescriptions, they would have to know your name, DOB, maybe address to pick up for you. I don't live where you do, but they didn't seem fishy to me.
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Paullettek,
Every time I come home from work or appointments, etc. my dog acts like I've been away a month. She's getting this way (again), because I had surgery in January for the hysterectomy and stayed home for 2 months. She's my dog now and I'd hate to scare the puppy out of her. She's so sweet. So, it's heavy jeans for me.
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I 'm on Day 8/Chemo 1. I would like to be part of the August group. For those of you who like to track their days, there is a new app called Chemowave that makes it easier for you to do. It's available free on the Apple App Store.
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welcome Marennorge, and thanks for the app recommendation! Gotta check it out, esp because my memory is so foggy from inconsistent sleep 😴
I'm on day 9 of chemo #1, so we started witin days of each other. Hope you're tolerating it well!
Glad you connected with us!
Willow
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Ang - glad you are feeling pretty good and getting rest!
SweetP - your description of your dog made me smile - she (?) sounds like a really sweet poochie! My rescued German shepherd/standard poodle mix does the same thing.... I love how much she adores me, but am wearing long pants more often too because she gets so carried away in her greeting (that includes when I come downstairs every morning 😍).
Gingernurse - teaspoons and SweetP have great suggestions for getting some support! All this is so scary, and then being alone while not feeling well has to make it even worse!
When you said you had an "infected port", is the skin over your port or the incision looking infected or did they say the actual port inside of you has a problem? Seems like a skin infection near the port/recent incision would require antibiotics for someone with a chemo compromised immune system. It seems unlikely that the actual port inside you is infected..... that would mean you have bacteria with direct access to your blood stream, which they would treat very aggressively as an inpatient to prevent you becoming septic.
Your side effects are worth talking to your medical oncologist (or whoever is covering) today rather than waiting for Monday. I really hope you reach out to them so that you can feel better soon!
Willow -
Mareennorge - welcome to August group.
Second day on my chemo round 2 - I think I do better than infusion number 2 because I know what would happen. My appetite is not bad compared to rounds one, no pains just a little bit of heavy feet. I didn't do my morning walks due to weakness. Need some energy to eat and prep food.
Will keep everyone in my prays and we will get thru this path!! Lov
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Hi everyone - I am on Day 4 of the first AC round, and so far this has been my worst day, but still manageable. No problem so far with bone pain from the Neulasta shot and was not told to take Claritin. However, I was quite constipated - took stool softener and Senakot and ate prunesand that worked eventually but I had to stay home all day. Has anyone else experienced this SE?
Wishing you all a good Sunday!
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I have a nurse navigator that I will be depending on more. I asked them if they can take me to and from appointments and they said only if it's within their time frame7:30-4. I work 11-7. My health insurance has in home care if necessary, but let's hope it doesn't get to that. The Zofran only lasts me about 6 hours so I'm going to call to get compazine added. I only got a small amount of support paperwork but the ACS was extremely helpful. The port has a bit of serosangieonus drainage, but it was very irritated. I was a hot mess. Today, however I was able to finally keep down 2 graham crackers and applesauce. Woo-hoo. I've been keeping hydrated with mint water and cinnamon- apple-ginger tea. And I did laundry. It felt much better, I just couldn't be a bum on my couch. I just had a terrible reaction to Lunasta and my WBC was at 14. Not ridiculous, but this isn't all new territory. I've been rinsing and brushing with hair bakingsoda1T and peroxide2T. So far no mouth sores. I'm hoping to eat some brown rice and veggies tomorrow. Thanks for all the great suggestions.
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Clear path - I found Day 4 is a tough day also, then day 6 too. I was told to take Claritin and many of us told by the doc also. Maybe you should double check. Constipated is part of the SE I just ate some prunes hope it works if not I take stools softener. Last time I took senna it costed me cramps so I won't try that again
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gingernurse, glad you are feeling better!
Clearpath, I know that both of the meds I'm taking for nausea (zofran and compazine) can cause constipation, which I was actually hoping for since chemo gave me diarrhea. Many chemo meds can cause constipation too. I know I wasn't anywhere near as active as usual that 1st week after chemo, and wasnt eating much fiber.... all that can add up to constipation really easily 😯
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When I had my first infusion I didn't know about the Claritin (not "D") and I had really bad bone pain after my last neupogen shot. My 2nd time I took the Claritin and the pain was much lower and lasted a much shorter time. I'm not sure who first suggested it, but thanks!
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Kritti: My understanding of the Neulasta shot is to keep your WBC in check since the chemo drugs will lower your blood counts. Since you're not doing Neulasta, I would think they want to check it during week 1 or 2, when the counts are supposed to be lowest. This would be the best way to prevent infections instead of waiting for them to happen.
Do you know why they are not recommending it? Could it be that insurance won't cover it? It is an expensive drug...
I had Neulasta and they won't check my labs until a few days before my next infusion as well.
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Thanks PauletteK and Willow22 for your replies. I am going to ask about Claritin.
Gingernurse, I hope you continue to improve.
I'm up early today because I fell asleep way earlier than normal yesterday. My son is coming today so maybe I can go food shopping with him later. I like to cook but have only energy to prep very simple meals and have been losing weight due to lack of appetite and anxiety. Not really a problem though since I need to lose another 10 pounds to no longer be overweight - but I wish the weight would come off my tummy and not my face!)
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For those with constipation - I have always had an issue with constipation even before BC. I have spoken with all of my doctor's about it because after surgery, I did not have a movement for 10 days. Ugh - it was awful. I take the following: two teaspoons of a magnesium citrate powder called "Calm" purchased at GNC. My cousin is a nutritionist for The Biggest Loser show and recommended it. My doctor's all agreed it was fine to take. I just make a hot tea with it each morning. I also take a Magnesium Oxide supplement each night. Magnesium is good for constipation and it also relaxes you. The doctors recommended not taking any fiber pills at this time and obviously trying to eat high fiber foods. If I am still constipated then they suggested the Sennokot-S. My one doctor even made me a "Constipation" flow chart, which made me laugh and appreciated since I'm a project manager. Anyway, you can talk with your doctors about what is right for you but generally, magnesium is not harmful.
I felt great yesterday (Day 5 for me) - first time in a while. I did some cleaning and then had a late lunch out with my daughter. It was really nice to feel better. My throat really hurts this morning though, so hopefully I didn't overdo it. Drinking green peach tea hoping that helps.
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Kritti - sunnyjay, has a really good point about insurance. But, if they do a CBC and the white count is really low, maybe that is enough demonstrated need to get insurance coverage. There is also a patuent assistance program from the drug company (saw that on their website when looking up side effects). I know the program for humira is an enormous savings for my father in law.
Seems like an ER visit or hospitalization for fever would be sig more expensive than the shot! Eithwr way, i don't understand how the MO knows you can get by without the neulasta, unless he checks your counts to see how low you actually are.
I don't remember your situation, but if you have children, wotk with the public or have other exposures to germs that you can't modify, seems like those would need to be considered too.
Hope you get answers that you are comfortable with!
Willow
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Neulasta ladies, any suggestiins fir bone aches besides meds? I'm doing the daily claritin, but am awake and pretty at 5am, and will be getting shot #3 today. I'm also watching my temp to know whether to start an antibiotic rx, so I dont want to take tylenol etc since it will mask a fever. Trying a heating pad on low now with not much improvement.. any other thoughts? Does walking or gentle exercise help at all?
clearpath, I'm with you in the weight department... trying to focus on protein and really healthy foods when I am able to eat, but a little weight loss would be a nice side benefit for my tummy and thighs 😉
Teaspoons, glad you had such a great day yesterday!
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Willow22 - only thing nurse told me is Claritin and Advil and Claritin seems to take care my problem for now.
I'm on day 2 of the second infusion things actually gets better I have more appetite compared to the first one. Only problem is constipation - prune is not working now I'm trying stools softerner. I don't want to try too strong and turned into stomach cramps as last time.
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