Starting chemo February 2020
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Dysonsphere - Big hugs. I'm so sorry you feel like your going through this mostly alone. Just wanted to offer a virtual hug and offer of support. You are a very strong woman and mother. I am praying for you.
A coworker was just diagnosed with the virus. I have not been in the office since starting chemo but did go to a work function in a private home on Saturday. Two people there had contact with the individual who has the virus. I only gave a side hug to one of them and used hand sanitizer soon thereafter. I spoke to my oncologist, who says everyone who has been exposed should quarantine themselves for 14 days. I should call if I develop a cough and fever. I'm not feeling any symptoms at this point and just hoping everyone at the office gets through this unscathed.
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@cricketdog - This is our worst nightmare right now. Glad to hear that you have no symptoms and your doc is on top of it. Wishing all the best for you!
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Cricketdog- I hope you remain symptomless! Just puts onto perspective how vulnerable we are.
After writing this morning that I was going to return to work Monday, I have officially decided not to. Too risky with my immune system. My principal supports me, which is nice. Now off to make sub plans and get materials ready for the rest of the school year..
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Stay Safe cricketdog!
ETA: I've been working remote since I started chemo but, they just closed my building to non-essential personnel.
Makes me not want to leave the house
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JUST A WARNING
If you are taking taxol be prepared to get the taxol rash. It normally starts about week 8 but with the clinical trial I’m on in combination with taxol that makes it come sooner. I’m on week 5 of taxol and last night I broke out in a rash on my arms, stomach, elbows. It looks like you’re having an allergic reaction a bunch of red little spots everywhere. But it’s just a rash It’s starting to spread down my legs now and on my chest. They told me today at chemo that the majority of people get taxol rash so Be ready because I was not. Hydrocortisone cream, Benadryl and steroid cream Is how they treat it. Just wanted to give a warning since I know most of y’all are doing taxol sec
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Dysonsphere- hugs and prayers!!
Cricketdog- I hope you stay symptom free!
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Today was day 6 of my second chemo and day 4 of my self imposed quarantine. I could tell I felt better by the quantity I ate today. Surprisingly, milk and cornbread has been a diet staple the last two days. Good ol’ southern food!!
I have no desire to go out in the craziness. I have been taking a daily walk this time and I feel it has helped me. I do a lot of jigsaw puzzles and reading on my iPad. As soon as my fogginess goes away, I will start making some jewelry again.
I hope everyone is well.
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someone please tell me what you’re eating when literally every single thing tastes terrible? I’ve tried the plastic utensils and that’s not helping. Everything tastes like metal or just so weird and gross. My mouth is also numb feeling Not like affect my breathing or anything. Just everything’s is numb. Someone give me some advice please. I’m currently forcing myself to drink an ensure a day and eat at least one small meal but I’m getting so sick and tired of this taste thing
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I always found sweets worked on the bad days. For some reason I love cantaloupe on my bad days but, that brings it's own problem so if you eat too much.
Bad days are usually fruit (cantaloupe), jello, ice cream/sherbert and, shakes (carnation instant breakfast).
I've heard that ice chips help to numb the taste buds maybe try chomping on some before eating and see if that helps?
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hray, I wish I had some advice. I had terrible day yesterday where I tried eating everything in my house but nothing tasted like anything. Basically, it it's not really sweet, I can't even taste it. It's frustrating and sad. I am going to grocery store this morning to see if 1. there is any food to be had due to covid and 2. try to find some creative food to wake up my taste buds. I won't deny I almost cried yesterday because I really miss the pleasure of eating and enjoying my food!
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Hray, i totally understand. I brush my teeth before and after I eat and I also swish with the salt and baking soda. I got thrush the first time and I don’t want it again! These are the things that I’ve been able to eat: vanilla protein drinks, milk and cornbread, chicken and dumplings, vanilla ice cream, scrambled eggs, peanut butter, Reese’s pb cups, and grape juice. Small quantities but enough to get me through the days. I hope you find some things you can eat.
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Hray - I started drinking the Ensure high protein drinks, which have helped a bit. I also consume Propel flavored water like it's going out of style. The peach and cherry are pretty good! I also like spicy foods. I know most say you shouldn't eat spicy foods because of the effect on your mouth and digestive systems but it's about the only thing I can taste and I don't have the mouth issues. My taste comes back around day 10 or so, however. I do find I need to eat smaller quantities -- seems my digestive system just isn't processing food as timely as it used to. It seems to sit in my stomach longer.
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I wish I could eat peanut butter, I love it, especially on Apples but, it just tastes funny t9 me so I stopped eating it.
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Has anyone had any issues with their chemo due to coronavirus? I'm starting to wonder if they will postpone my upcoming appointments. I am already having an issue because I have a young child and schools are closed. Now the daycare may close and I have no one to watch him. He is not allowed at chemo infusions.
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I was actually wondering about that. They normally call on Monday to confirm and I didn't get a call. Was wondering if something was up.
My state just went on lockdown, everything is closed (movies, malls, gyms, restaurants/bars (except take out) schools and casinos) for 8 weeks. I know groceries and pharmacy are open, i assume Dr's are as well. I do wonder if they're trying to work the schedule to limit patients. Not allowed to have more than 50 people.
I'm supposed to go for treatment #3 on Wednesday. Guess we'll see
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I have round 3 a week from today. I haven’t heard anything on postponing yet. So much changes daily that I think I’ll wait before calling and asking...I want to just power through and get my treatment done but all that’s going on with this covid-19 makes me nervous.
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I called this morning to confirm since it was unusual that they didn't call me on Monday.
They ended up calling this afternoon to confirm the appointment. They have new rules no family/friends/support, patients only for now to protect against Coronavirus
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Morrign - thanks for posting. I was wondering if they might start taking that approach. I'm cold capping with the caps that have to be changed. I'm waiting to see how this plays out at the center I use. I have another week and a day. A friend is flying in from out of state to help with the capping this time and I imagine they won't want anyone who has been on an airplane to be around a bunch of chemo patients. Ugghhh...
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I had my first of 4 DD Taxol this morning and my husband and I were both 'screened' before entering the building. I had been called over the weekend and told that I could have 1 visitor for my chemo. I also got a call over the weekend that confirmed that my surgery, to exchange the tissue expanders is still going to happen, it is not considered elective because they want to do it before my radiation therapy.
While we had been following all of the necessary protocols for hand washing/sanitizing etc. we were told that I should only leave the house when I need to go for a walk - and of course maintain 6 ft distance from others when I am walking. They told my husband that when he goes to the store he needs to change his clothes when he gets home and immediately wash them.
I had been nervous about starting the Taxol - my side effects for the AC were minimal and I have been concerned about what the side effects would be with the Taxol. They told me to expect fatigue, and potential bone/nerve pain - I haven't had any bone pain with the neulesta and am praying that my luck continues. I didn't have an allergic reaction today - and if I don't have any allergic reactions at my next infusion they will be able to stop the steroids and Benadryl - fingers crossed.
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I'll let you know what they tell me today. I live alone so I'm not sure i can follow the rule of never leaving the house. I need to get groceries at some point. Not sure if they'll do delivery with everything going on.
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Morrigan, I have been ordering Amazon fresh delivery. As expected, cleaning and paper products are limited and I actually have to wait about 2 days for the delivery instead of 2 hours but it' s better than taking a risk of being around people when WBC is low.
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thanks dysonsphere - I'll have to look into Amazon Fresh. My grocery chain does delivery or at least they did until Corona. Will also look into that as an option.
Trip to the Chemo Center today was surreal. Walked in and met by Nurse who checked my temp, gave me anti bacterial gel to clean my hands before going to check in desk. There was only one other person in the lobby.
Time to get blood drawn they took us back 1 at time (before it was 3-4 in the lab)
Out in the Chemo room they are spacing people out, every other chair. In order to keep to social distancing.
Asked my MO he said no extra strict rules, avoid crowds, keep 6 ft apart, wash hands and sanitize. Can go out for walks when the weather is nice but keep distance from others.
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I had to drive myself to my LAST (WHOO!) AC round yesterday after scrambling for last minute daycare. I've been doing a lot of praying that God will make a way through this unusual situation we are all going through with COVID-19. I imagine it was the pure relief of actually getting there that helped me make it through the experience of driving myself home pumped full of drugs! I still don't know if I will make it get my IV's next week so I will be extra careful this week with my fluids. How is everyone else doing?
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So far so good. Pretty much staying on lock down unless I have to go to the Doctor.
Have enough food to last 1-2 more weeks. Will get groceries delivered next week otherwise just hoping to make it through Chemo uninfected.
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I’ve also been on lock down with my family at home. I’ve basically been home alone since January when I had my BMX and reconstruction (kids at school/daycare, husband working after a few weeks of being off to help). Now they’re all home with me and while I love them dearly they are exhausting at 5, 3, and 1 along with me now planning for “distance learning” for my special education students for the foreseeable future. It’s a challenge but it keeps me busy I guess! I’ll also be going solo to my next infusion (this Tuesday) due to my clinic’s new policy of no visitors. They call the day before with a checklist of questions and then greet you at the door as you enter to ask you the questions again to screen for illness. Other than that they said I will continue on with treatment.
Dysonsphere- congrats on your last AC round! It’s a major accomplishment to be sure!!
Hope everyone else is well!
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i don't get joint or muscle pain from the neulasta shot but, I swear it knocks me on my ass, just get some tired after the shot. Lasts for about 3 days.
I hope all is well with everyone. Stay safe!
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Morrigan- I got a little bit of back spasms starting day 6-7 from the nuelasta shot, but similar to you I had major fatigue. Mine hit Day 3. Overall the neulesta shot helped me feel better and I def will continue it for my 4 remaining treatments
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Dysonsphere- Congratulations!!!!
I’m glad to hear from those of you who are hunkering down and staying safe. My husband is now working from home. I stay home except for walks. My girls have always been homeschooled, but now we can’t go to their fine arts classes.
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I've been staying home with this too. My husband goes out for groceries, it's hard to go too many days with four kids at home and limitations at our stores on things like milk. With my kids home, we can go through a gallon of milk a day. It's been overwhelming trying to "homeschool" all four, and keep them from vegging out all day on screens. I tried really hard the last week to get them on a routine so that they don't give my husband trouble on the days after chemo when I just can't help. I go Wednesday for my next TCHP treatment. Going three weeks between treatments feels like a lifetime. I feel so much better and then I'm just waiting and waiting. With all the uncertainty in the world and especially at hospitals, I just want to get these next 4 treatments done!
For those going into chemo, do you wear a mask while you go? I have 10 masks I ordered just in case, long before things got crazy, not sure if I should wear one into the cancer center on Wednesday. Who has to go back the next day for their neulasta shot? My insurance doesn't cover on pro, just a generic version of the shot, so I have to go back to the hospital the next day. I asked my insurance nurse navigator if we can get the changed given the exposure risk, so she is trying, but wasn't that hopeful that it would get approved.
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i have to go back 2 days after chemo for the shot, my insurance won't approve the patch either. I've also asked if I can get the patch for round 4 but, I'm not hopeful.
If it makes you feel better/safer to wear a mask you should do it for your own peace of mind but, I don't think they really help. They're more to prevent germs getting out than in.
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