March 2020 Chemo
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Oh and I am also going to stop the cold caps. With everything going on now in the world I don't want that added cost in addition it is more work than I feel I am up to. I want to simplify things and feel this is a good option. I had a chunk of hair come out in my hands yesterday anyway so that is a fight I am not wanting to fight right now. This decision feels good.
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So good to hear from you Cassandra!!!
I've been thinking of you and wondering how you were doing.
I can so relate to not fully accepting this and going about daily life in resistance mode, trying to please people. That is me! Now that chemo is only 2 days away, it seems to be crashing down on me. Outwardly, I look fine and "normal".....but emotionally and mentally, I am torn down and a walking mess. Add the Coronavirus to all of this crap and yea, I am absolutely losing my mind! Is there a worse time to have to go through this nonsense? I mean, really?!?!?!
I am glad that the meds are slowly helping you feel better. I hope that continues! ((((Hugs))))
I agree with you on the port. When I had labs done last week, I didn't have the numbing cream. The nurses sprayed that freezing spray and I didn't feel a thing! Not even a little pinch. They told me to forget about the numbing cream, they will use the spray instead. Works for me! One less thing.
We WILL get through all of this! One step at a time, one moment at a time, if need be. A year from now, we will look back and realize just how strong we are! I'm so grateful for all of you and our little group. We're in this together, ladies!
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good morning y’all
I have been quiet for a few days struggling with awful bone and muscle pain in lower back. They think it is the Neulasta. I am taking a ‘cocktail’ of tramadol and flexeril followed by benedryl. Benedryl knocks me out so I have been sleeping or groggy the past two days. It started Sunday night.
I didn’t need a numbing cream for my port either. It is a quick stick. I really don’t feel it. I had to get IV fluids last Friday due to dehydration from diarrhea so that is the second time my port was used.
Cassandra, I hope you get relief soon from the heart burn. I am very gassy but no heartburn thus far.
I agree that being outside or crafting helps sooth your mind. Migratory birds have coming through my yard and fueling up at my bird feeders. I wish I felt better to do some simple yard work but that isn’t possible right now and the benedryl makes it impossible to read or watch something. My sweet Golden Retriever puppy stays by my side and she is a big comfort.....when she isn’t trying to chew up ice packs or nab some of my banana!
Hope you all have a great day.
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Good to hear from you all today. I’m struggling with anxiety right now over everything going on in our world and what we are dealing with! Plus my blood pressure and heart rate is elevated which makes me more nervous. Trying to meditate now.
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Oh Julie, I hate to hear that you are suffering with bone and muscle pain. I am so sorry!
Have you tried Claritin for the bone pain?? Many ladies here swear by it for the pain that can come with Neulasta. My oncologist said that I could take it, to see if it helps. You may want to ask about it?
((((Hugs)))) I really hope that you feel better soon!0 -
Had my last chemo today! Yay. Now just Herceptin from here on. The chemo was much easier than I thought it would be. Other than the 3 days it put me down and losing my hair. Those of you just starting out good luck. I hope you have an easy time of it.
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Congrats bkerber on reaching an important milestone! I am so happy for you that your SE were minor.
I am curious if anyone has discussed with their oncologist about whether or not to delay chemo given the COVID-19 situation? What precautions are y’all taking? We are doing grocery pickup instead of going in the store. A friend has picked up a few things I needed at the store that we couldn’t find with our online order. The stores here are sold out of Gatorade, toilet paper, ibuprofen, and other essential things needed while going through chemo. We have 3 grocery stores so there aren’t lots of options. My son is staying with me and we sprayed down all surfaces with bleach solution nightly when my family visited this last weekend. No one is allowed in the house now but me and my son. It is allergy and pollen season here in South Georgia so sniffles are everywhere already.
Karen, I have been on Claritin since before my chemo. So my MO suggested taking benedryl on top of the Claritin. The benedryl does help but it knocks me out.
JP47 these are scary times. I have been doing some simple Tai Chi to help with lymphadema and to calm my mind. Meditation is a great way to sooth anxiety. I watch the birds in my yard, they always make me laugh. I watch funny things online. Chemo during a pandemic is a scary thing. Either one of those is an anxiety provoking situation and we have both to deal with.
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Hi Julie!
Chemo starts for me tomorrow. I am an absolute nervous wreck! About the chemo AND about this Coronavirus. I have not talked to my oncologist about delaying, but I do go in this afternoon for labs and will bring it up then. Especially with my husband being a police officer, he can NOT practice social distancing at work. He is careful, of course, but who knows what he is bringing home? Ugh! I am just a mess.
One piece of good news.....I begin working from home this morning, yay! That does help me relax a bit as now I can keep my happy butt at home and not have to worry about coming into contact with tons of people. I am so grateful.0 -
hello!
I had my first chemo of taxol and herceptin today. I am so glad it’s over!! It went ok , no reactions , just a long 10 hour day. I asked about delaying and they said no. I had my port yesterday and it was still super sore today so they put in an iv for the first treatment. They told me no cream today. And I checked , we don’t have that spray people are talking about 🙁 the iv was the easiest iv I’ve ever had, it was a tiny butterfly one. They give me Benadryl and I was so loopy from it. I fell right asleep. But I woke up to ice my hands and feet for the taxol. 1 down ,11 more to go! I ordered a human hair wig that came in the wrong color and the new one is coming tomorrow but the salon had to close and they are not sure when they will reopen 🙁
Good luck etnasgrl tomorrow!
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Hi Julie,
The bone pain is real that's for sure, had mine for several days after being given udenyca, my oncologist said it would pass by Tuesday and was right, although i did go straight into curl up into a ball diarrhea and stomach cramps
am hoping thats passed today so can eat something.now if only my hair follicles didn't feel like i had my hair in an over tight bun....
Ohh and shopping for essentials is crazy atm... the most precious thing i have at the moment that i bought are the baby wipes...
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Hi Ladies!!
First Taxol and Herceptin is in the books, baby! I went in at 8 and we left at 1, so all in all, not too long of a day. My husband stopped to get something to eat for lunch, (for himself, not me. I am NOT hungry at all.), and we made it back home at 2. I have the rest of the day off, so I am lounging around in my PJ's, roaming Facebook and these message boards, while watching shows on my DVR.
It all went very well today. No complications, reactions, or issues. I am beyond grateful as I was SO nervous that something would end up happening. As of this moment, I feel fine. Totally normal. I'm hopeful it will last, but preparing for it not to. We shall see. Now that I have faced the unknown, I am not as anxious anymore. Although, I am still worried about side effects. I guess I will cross that bridge when I get to it.
I have a hair appointment on Sunday, to get my head shaved and my wigs fitted/trimmed. I'm sure that will be a crazy situation as my hair is long and I will look quite different with none!
I hope everyone is doing well today. Nooch…..how are you feeling today??0 -
Nooch and Karen - I am glad your first treatment went well!
Jettie - I am sorry you also had extreme bone pain. I hadn’t read of many people having that SE so it is comforting to hear of another person having that SE. It was the most intense pain - way worse than surgery or the port.
It is almost time for my daily disinfecting spray of surfaces in the house. Even though my son and I are quarantined together, it gives me some peace of mine to clean surfaces. Never know what my puppy has licked or brought in from outside 🤣. We made a bleach solution that I use on my purse when I have had to go to medical appointments. Had to have my Seroma aspirated again today. But at least it is only once a week now instead of every few days.
My oncology center went to patient only last week. Is that the situation for everyone else?
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Julie....
My infusion center is in the hospital. They are still allowing people to come in, but it's a process. When you first walk in, they take your temp. If it's normal, you then move on to the hand sanitizer section and clean your hands. Then you move on to a station where they ask you numerous questions. If you pass all of that, they give you a visitor bracelet to wear while there.
Because I was getting chemo, they took my temp, had me do the hand sanitizer. I didn't have to answer any questions, I could go straight to the infusion center. My husband came with me and had to go through all of the steps. It took about 5-10 minutes to "clear" him as there was line.
When we reached the infusion center, there was a guard at the door who asked for ID and cleared it with the nurse before allowing us to come in. Only people with appointments and there one visitor is allowed entrance.
I was happy to see such strong measures to keep us as safe as possible!0 -
Hi there!
I feel like myself today. No side effects yet. Maybe still on a steroid high. But I was able to sleep last night.
Anybody that has a port...how long was it sore? I am worried that mine is still so tender. I swear it bothers me more than my lumpectomy. It’s even tender on the top incision where it’s tunneled
Funny story about my wig. I ordered a human hair wig and it came in the wrong color so the new one was coming today. But our governor shut down all salons and barbers last night. So I have no idea when I’ll get the wig 🙁 thanks corona virus. I am glad they are taking these measures.
I’m glad it went well etnasgrl!
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Nooch…..I had my port placed during my lumpectomy. That port bothered me much more than the lumpectomy! It was sore and tender and my neck hurt and was tight. I want to say it lasted several days, but not quite a week. Now, I don't notice it at all! You'll get to that same place, where you won't even notice it.
Now, it doesn't bother me, even when they access it.
I'm SO glad that you are still feeling well and were able to get some sleep, that is terrific news!! I was thinking of you and hoping you would give an update. So far, I am feeling fine as well and was also able to sleep. Let's hope it continues for us both!!
How is everyone else doing??
Julie....how is your bone pain? Any better?
Cassandra...how are you feeling?0 -
Morning ladies, hope your all doing well
and if not, hang in there, we will get through this !!Nooch, for about a week, totally agree with etnasgrl, you will soon forget its there
if i poke around in my neck i can feel one of the veins thicker than normal.. but that's only if i look for it...I have my infusions at my oncologists office as they do both chemo and blood issues in a treatment room there, and its patient only allowed into that area. Will see if any changes have been implemented in the building when i go Monday for a check up.
Now the fun part is instilling into the family the joy of cleaning down sides, handles and often touched surfaces, so unless i am up for cleaning the kitchen have been avoiding it.
Ohh and i finally got around to ordering a wig... so that should be fun, gonna ring my insurance to see what cost limits there are on the hmm "cranial prosthesis" is as i may order another, but they only cover the cost of one. I must admit everytime i see the term "cranial prosthesis" i giggle.. gotta get your laugh where you can!
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Hello everyone. I am new to this group. I live in Maine and am about to turn 62. I am very active person ( mostly cycling). Although I had no risk factors, I was dx'd in late January and had a lumpectomy on 3/4/2020 and there was significant node involvement :-(
so I got a port installed this week ( it is still bothering, not sure why). And Chemo starts on Monday 3/23 ( my birthday!).
I am having A/C followed by Taxol. Then surgery to remove the rest of the lumps, then radiation.
A long road ahead.
I have ordered some wigs to try, but not sure about hats. Any recommendations?
Lila
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Welcome Lila, the port discomfort should go away in a couple of days, and you will forget its there, mine was installed on the 5th i think it was. with so much going on in this new roller coaster, its sometimes hard to remember off the top of my head what happened when... its still a blur
Personally for hats i got some funky slouchy beanies from amazon to wear to add a bit of fun, but something soft, with nothing to irritate the scalp would be best. Will see how they go once my hair goes bye bye, at the moment its still itching like a mofo, that wonderful sensation when you have had it tied back too tight for too long and then remove the bobble
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I agree with the others that the port pain was intense. It lasted for me about 5 days. Now I don’t feel it. The first three days with the port were pretty bad.
I ordered headcaps from headcovers.com. They have a great selection of styles. I like the bamboo cap for at night. My insurance covered a few and I got those at a local medical supply store but their selection was very limited. It is so hot already in South Georgia that I didn’t think I could handle a wig.
I woke up with mild bone pain again but doubled the Claritin and it is better now.
We have two COVID-19 cases in the hospital in our small town. Stay safe!
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Hi everyone and welcome to the new peeps!
This morning was the first morning I woke up feeling good. It lasted a couple hours! I am so grateful for that. My port has not really bothered me. Since I am no longer going to cold cap it leaves me wondering if I should cut my hair before it falls out in chunks. Oh the fun we get to look forward to. My insurance doesn't cover Cranial Prosthesis. As I was writing this I heard back from the vendor for the cold caps I am using and she has offered to donate it for free. Now I am not sure what to do. It is quite the process. I am just wanting to simplify things. My genetics testing came back and I have a CHECK2 mutation. I hope I am saying that right. It puts me at higher risk for breast, colon, thryoid and something else cancers. So with that information I am going to be opting for a double mastectomy when my chemo is finished. I am so thankful I live in a small town with all this Covid-19 stuff going on and that I can work from home. I work for a Real Estate agent as her transaction coordinator and assistant. Being homebound is hard though but because of the pandemic we aren't alone anymore with regards to having to stay home. Super weird times going on right now. Wishing you all a great weekend.
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Thanks Jettie.
Regarding the itchy head. I found on the "hatsscarvvesandmore . com website - under their "journal" they have a good article about shaving your head.... I am so glad I read that before I did anything! Especially since all the salons in my state are closed for several weeks at least.
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Welcome Lili!
Thank you for all the answers on the port. Hopefully i will get to use it next week. It feels a little better today.
How are you doing today etnasgrl ?
Good to hear from you Cassandra. I am glad you are having a good day! I have not heard of that gene.
I bought a really cute baseball hat on Etsy. It has hair attached to it. I figured that would be my go to for putting kids on the bus. But now there’s no school. I have no plans on leaving my house for the next 11 weeks except for chemo.My poor boys are going crazy.
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Hi Lila, welcome!
I ordered several beanies and head scarves from headcovers.com, they have a HUGE selection! I also purchased a hair halo, which is a headband that has hair on the sides and back, with detachable bangs in the front, to wear under beanies and scarves. Not as hot as a wig, but will still give the appearance of hair. Since I live in the Houston area, I am thinking that I will use that come Summer, when it's just too hot for wigs!
I'm sorry that you have to start your treatment on your birthday....that stinks.....but look at it this way...you are giving yourself the greatest gift by getting the meds you need to start kicking cancer's butt!! I wish you all the best on your first treatment day. It's SO scary facing the unknown, I know that I was a nervous wreck....but you'll do just fine and once you get through that first go-round, the fear loses it's grip a bit. ((((Hugs))))
Yikes Julie...two cases at your local hospital?? Stay safe!! I'm glad that doubling up on the Claritin has helped. I hope that you continue to feel better.
Cassandra, I'm also going to have a double mastectomy when chemo is over. Cancer in one breast and now the other....yea, it's time for these girls to go. I hate that, but it's really my only option at this point. I really do NOT want to go through this nonsense again! I will have immediate reconstruction, with the DIEP flap procedure. It's a long recovery, (about 8 weeks), but I plan to use short term disability.
I'm SO glad that you woke up feeling better today, that is WONDERFUL! Yay!! Hopefully, you are on the upside now and will start to feel better and better. I'm working from home now too. I've hit a few snags though. I have an internet phone for work, but I have an IP address that keeps changing every hour. Each time it changes, it knocks me off my internet phone. I'm working on getting that fixed, but until I do, I am not able to get much work done. Thankfully, my job is VERY understanding and working with me to fix these issues. I hope to be at full speed by Monday. Fingers crossed!
Nooch…..I am doing okay. Very tired! I actually took a little cat nap this afternoon on my lunch break. I noticed earlier that my legs are starting to get sore and achy. Nothing too terrible, but it is noticeable. Oh and I woke up this morning with really red, hot cheeks! I did some Google searching and apparently it is a side effect of the Taxol. They don't hurt or bother me, so I really don't mind. All in all, I have nothing to complain about!
How are YOU feeling now?? I hope still good! Update when you can.0 -
Is there anyone who is postponing their chemo during the Coronavirus pandemic? My husband is a physician who is on the front lines of screening and treating people. I am to receive a total of 4 infusions spaced every 3 weeks. Have had one so far and want to postpone the remainder of my infusions. My oncologist wants me to continue. The chemo is being done to help prevent recurrence as we think it was all removed with my lumpectomy and my sentinel nodes were negative. My Oncotype DX score was 32 and the cutoff to determine whether or not I would get chemo is 25. I don't feel that it is crucial for me to get chemo at this time and feel like I should postpone it. Our stress level is extremely high in our house and my husband will have to find someplace else to live if I continue my chemo right now. I'm just hoping to hear from others that may be in my same situation to see what they are considering. I will of course talk some more with my doctors and will follow their recommendations
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Hi yokosw, welcome!!
I would follow the advice of your oncologist. Granted, this is not a great time to be on chemo, but sometimes we just have to power through, regardless of the situations around us. As this is my second breast cancer diagnosis in less than 5 years, I am willing to take the risk of having a compromised immune system. I do not ever want to go through this nonsense again!
I guess that is what it boils down to for you. Would you be okay with taking the risk of a recurrence because you didn't continue with chemo? Only you can make that choice. Do you trust your oncologist? You should! If you don't, it's time to find a new one. And if you do, than you should trust his or her medical advice to continue with chemo.
It is doable, just take extra precautions! I wish you all the best, whatever you decide to do. ((((Hugs))))0 -
Thought I'd join the group as I am going through similar things. Began chemo yesterday after much concern about this coronavirus thing. I had called my oncologist the day before about postponing. She was o.k. with that, however, as we talked further I realized that to when was a problem. Looking down the road, I am not sure when it would be "safe" again. And by then it might have spread so I guess it was either do it or don't do it ever. Having to do chemo is hard...for everyone and as I look around, everyone has really good reasons why maybe it isn't the BEST time. We all are on different and difficult paths for sure.
My hubby currently undergoing radiation. Had prostate removed and then PSA going up again which signals, that yes, we will now to rads! He has had bladder and prostate cancer and they are monitoring a kidney cancer.
No problems with the chemo. It was much easier than I thought. Was met in the parking lot by a nurse who took my temperature which was comforting. They have the chemo stations far apart and were not that busy.
Today, feeling a little tired and have this rash some of you have mentioned. What have you done about that? My SE instructions say sometimes it goes away on it's own and sometimes they give you an antihistamine.
So glad to be here to share!!!!!!
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Welcome to the group!
I asked my oncologist multiple times if I could postpone the start of chemo and the answer was always no. There was no hesitation in his answer. I even tried to back out the day of. I asked to receive radiation first and was told no. I am so scared to start this long journey with the Coronavirus pandemic. I am not sure what I would do if my husband was a doctor on the front lines. That puts a whole different spin on things. I am a nurse and I am not working during my chemo.
I was warned that I would get a red glowing face the day after chemo from the steroids. I am still doing ok. I feel a little achy. How is everybody doing today?
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welcome yokosw and sharlyn! I too wondered about continuing. I have had one treatment and still struggle with fluid from my BMX. Yokosw you are in a very unique situation. I thank your husband for his work in treating patients. Healthcare workers will keep this virus from getting much worse. I am sorry this is happening to you.
It sounds like this pandemic is not a short term thing. It is indeed very scary to be immune compromised during a pandemic. I share my fears here so I don’t scare my two adult sons, my elderly parents, and my sister who are already so worried about me. This is such a great place to share our worries, our SE, and our hopes. We are here for you ❤️.
Glad to hear you are doing ok Nooch. Hope it stays that way! How are you today Karen? (Etnasgrl) Cassandra, I hope you are doing well today.
I had rosy cheeks last week, a week after my treatment, but it has resolved. I had a bad rash on my neck that I used hydrocortisone cream on and it is better now. I feel well enough today to attempt to make bread. My son and I are out of bread so I am going to refresh my bread making skills. Grocery online shopping isn’t going well here, people are panic buying so the two orders I tried to do didn’t turn out so well. A friend went to the store early am todayto score me some bananas, apples and spinach. Thank goodness for friends!
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Looks like we are all in this together. It is great to be able to come here to share. Yes, my rash could be from the steroids. I have had this kind of thing before after surgeries and figured it was some of the drugs they give you.
I have to say, I pray every day for all our healthcare workers who are in the trenches of this virus mess. They are so brave and this is certainly nothing they signed up for. Without them I do not know where we would be.
Grocery stores here the same. My oncologist told me to stay out of them since I am a senior citizen and taking chemo. Have two nice neighbors who have volunteered to help and also using the grocery pick up so don't have to go in. Even so, many stores out of items you want. Just have to make do.
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Morning ladies, and to our new friends yokosw and sharlyn
Today is the first day i have actually felt somewhat, kinda, maybe normal. I actually managed to eat today, so that's a good thing, I've already lost 10lbs, not that i dont have spare to shed. For me this TCHP regime is evil. Wondering how the hell i am going to manage work if its going to knock me on my tush for a whole week.
Julie, my rash has been all over the T zone on my face and is calming down too, think the aveeno is working. Good luck with the bread baking and let us know how it turns out,
Totally agree with online ordering atm its hit an miss, hubby managed to get me some bananas the other day, so am please about that, have them all individually wrapped in cellophane to try and delay the browning, and if they dont, well then its banana bread time - YUM!! ohhh and amazon actually had some packs of baby wipes today, not many but was able to order an addition 3. Considering my kids are in there 20's its been a very long time since i was excited about ordering those. There a total blessing is the nether region is a wee bit sore.
This is the WORST time for anyone to be going through chemo, but its a necessary evil, if its going to stop/kill those evil cancer cells. I am definitely keeping mine up. My step mom passed away earlier this month with stage IV cancer that was that advanced she opted to go with palliative care only. Now if they did home visits lol
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