November 2019 Chemo Club
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Thank you all Margo, Dixie02, Lisa 😊. I’m glad I can vent here. I have no one to lay the heavy stuff. Keeping a brave face at work and for my kids and for my parents. But there are moments where I feel scared and yesterday was one of those moments. I still have a few weeks to go before my first treatment but at least I have you girls. Seriously we know so much stuff that we can pass for an oncologist...lol. One day at a time. Keep strong 💪 💪
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Hello! I need to know which mittens and socks are the best to buy for cold therapy. My first chemo is 12-05. Thanks!
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Eigna, Margo, Lisa, Dixie, EVERYONE - it is sooooo heartening to hear that all of us are going through the same mental/emotional ups and downs with the heavy stuff. I have been amazed at how quickly I go from being all "I can do this" to blubbering in my bed feeling absolutely hopeless. I literally cried all the way to work this morning because I felt like crap both physically and emotionally and knew it may be months until I feel like myself again in any way. But then I got to work and loggedonto this forum and I IMMEDIATELY felt better. BC is a f'ing rollarcoaster indeed, and we deserve to let ourselves feel all of the negative emotions as they come. Give ourselves permission to wallow when we need to. But also always remember that we are not alone in the fight, even when we feel like we might be. There are a huge number of amazing people right here who are willing to listen, commiserate, and help.
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Sending out my most positive thoughts and vibes to everyone today. It sounds like many of you are having some rough moments or days and I am right there with you. I have no words of wisdom just empathy and understanding. (gentle hugs)
Today is another good day for me (so far) and I am excited to see what I can accomplish today. Nothing major, of course, since I am very aware of how fast my energy can deplete but if I can just get some parcels mailed and some bottles to the depot, that will be a great day for me.
Update on the weighted blanket: It is weird and wonderful! It is not hot at all since the blanket itself is quite thin- the weight comes from glass beads sewn into it. I went to bed at 8 last night and got up once in the middle of the night for a bathroom trip and back to bed and asleep until 6:30 this morning. I have no idea if that was because of the blanket or just having a great night's sleep in general but the blanket certainly didn't hurt lol! It seems strange at first that a thin blanket can feel so heavy but it does give a comfort that is hard to explain really. For those of you who are struggling with sleep and/or anxiety at night- I would recommend giving it a try if you can.
Question for those of you who are working while going through chemo, if you don't mind sharing. Are you working because you have to or because you want to? I am amazed how many of you talk about being at work through this and I just can't imagine that. I am very very lucky that my job has great benefits that allow me to be off work during my treatment. Some days I could do my job, but I would never know from day to day how long that would last and my employer can't just get someone to cover for me at a moment's notice so short term disability works for both of us better in that regard. Is your employer understanding of your limitations? Do you have flexibility to come and go from day to day? Where do you call home? (interested in knowing if the working through chemo is more prevalent in the U.S. where benefits vary greatly from employer to employer and government can be rather stingy with FMLA from what I understand). I am in Canada so we do have some things in place for having to take time off work where the employer doesn't offer benefits. Thanks for sharing for those of you who choose to indulge my curiosity lol!
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can anyone tell me what you put on your head after hair falls out..?.. lotions, conditioner, etc.
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Hello everyone,
Those feelings of dread and despair totally described me last February. Whenever I saw my SO,MO, or RO seemed like I got worse and worse news. One of the worst moments was when I was prepped about to go in for a third surgery to clear residual DCIS when SO walked in to tell me that my Onco score was a 48!! Something none of the doctors expected. So surgery got postponed due to my needing chemo. Yes, chemo was tough, but I got through it, and you will too! I got the third surgery after chemo, then did 16 rounds of radiation. I look back on all of it, 3 surgeries, IORT, chemo, radiation and think, How did I get through it all? You will get through, believe me. You are stronger than you think. One day at a time was my mantra. If I got to thinking too far ahead, that is when the panic would set in. I still have days where I get down about this past year, but staying busy, staying very active (long brisk walks are great), and just doing what makes me happy are wonderful distractions. You are all in my prayers. Hope that everyone is able to have a nice holiday season despite the situation. Be strong. Happy Thanksgiving, Pat💞
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I shaved my head last night. My husband and son did it because it was easier for me to just sit there with my eyes closed. They thought it was fun. We used electric clippers with big guard, so I have a crew cut. My hair was falling out more yesterday than it was Monday, and I could tell that it was going to be something that got worse as days went by. My ego was panicking because Thanksgiving is tomorrow, and we're visiting In-laws on Sunday, I won't have time to go into hiding while I get comfortable with myself. But, I also didn't want to be leaving large amounts of hair everywhere I went. The way it was going, I could tell that even a shower would have been gag inducing LOL Feeling all of those wet hairs wash down my body *hork* Having to pull them out of the drain ugh. Looking at my shirt right now, I see my tiny little hairs all over it. I made the right decision.
Already I prefer the beanies/scarves to the wig. The wig is itchy, and hot. The sore scalp that I was feeling is still there, but not as bad it was with long hair. I wonder if/when that stops?
Charlie: I'm in the New Orleans area of the U.S. I work for a local restaurant that also has a corporate events catering company. I was able to do what we call "pick up only", which means I decide when I feel strong enough to work and if something is available I pick it up. They're a great company to work for, but I don't get paid when I'm not working. My husband owns a home repairs/painting business, and he's always been the one to pay the major bill's.
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Thanks for sharing your work situation Dixie. It sounds like that works well for you and I am glad to hear it.
Well done on getting through the head shave. I am going to do mine this weekend and just be done with it. My hair isn't falling out yet but I don't want to deal with that part piece by piece.
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Looks like I get to join to this club as well. I had a double mastectomy on October 22nd and will start chemo on December 13th. I have done pretty good so far but freaking out about chemo. As all of us in here, I am ready to be done with treatment if there is such a thing.
Thank you to all that contribute to this forum. It really does help to hear from others going through the same thing.
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Glad to find someone that is getting the same chemo regiment as me. My first is December 13th. Hope all goes well and I truly appreciate any information that you post.
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Welcome to our group Cathy. Which chemo treatments are you having? TC , AC?
Dixie02- thanks for sharing with us about your hair loss. I’m not looking forward losing my hair 😢.
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Charlie - I am a paralegal in a two lawyer and two paralegal law firm and have no choice but to work as I'm single and my job is my only income source. Thankfully my bosses have been wonderful so far about letting me take off for my surgery, doctors appointments, etc. Chemo may end up testing their patience somewhat due to the fact that I have no idea how I'm going to feel hour to hour, much less day to day. It's not the type of job (or a big enough office) where someone can take over a deadline for me at the last minute without a huge amount of stress and upheaval. And to be honest I am actually insanely jealous of the people who don't have to work through all this for exactly that reason. In fact part of the reason I cried all the way to work this morning was because I was having a pity party for having to be the only one in my office who even went to work today when I felt like crap. The other three are all traveling for the holiday. But I also have to admit that making the effort to go in actually made me feel better all the way around once my meds kicked in, so in a lot of ways it's good that I do have to work. It keeps the pity party at bay
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Dixie - bravo for your head shaving bravery. It sucks that it had to be on a long holiday weekend. Let us know how all your visits go. Hopefully you'll get at least somewhat comfortable with your new look quickly. I'm now thinking of copying you and Charlie and just doing it sooner rather than latter just to get it over with.
Also, please do me a tiny favor and enjoy NOLA a little bit extra for me tomorrow. This is my first Thanksgiving ever that I won't be there and I'll be missing it mightily tomorrow.
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Karen, I enjoy NOLA during the holidays. Christmas is a good time to play tourist, so I look forward to that sometime soon. What area of the country did you move to?
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Thanks for sharing your work situation Karen. Are you able to work from home at all? I wonder if there are any accommodations the partners can give you where you can still get some things done but you don't have to wear yourself out getting ready for work or even just getting TO work.
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RadQueen and Dixie02
Thank you!
I had my second chemo yesterday without the Emla. Not too bad but I think I’ll try to find the substitute. You said you had Neulasta? They gave me the Neulasta On Board Injector after the chemo. It’s set to go off 29 hours after the chemo.
How are the side effects of Neulasta? I’m apprehensive. Not worried exactly, but anxious.
The best. part of yesterday is GOOD! The 10 cm x 7 cm tumor is shrinking. Just a “silly cm” but I’m doing cartwheels because it means the chest muscle cancer is shrunk too!
My MO even high-fived with me
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Mac, the side effect for Nuelasta is bone pain, which is a strange one to comprehend. My chemo days are on a Monday, and by Friday I had forgotten to take a Clartin (I take mine at bedtime. If you live near a Costco, their store brand is $14 for a years supply) and that Saturday my pelvis hurt. It wasn't unbearable, but I could feel it throbbing, and it caused me to waddle when I walked. It was a strange sensation, that was gone the next day.
I'm glad that you're tumor is shrinking. What a relief that must be for you. Did they do a mammogram to see that? How did they know? I have the same treatment plan as far as seeing which chemo the tumor responds to, so I'm curious about how they can see if it's working.
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I went to my hairdresser yesterday and had my head shaved, and shaved all the way down. I thought I’d be a complete mess about it, but I wasn’t at all. It was actually a little liberating to conquer the fear and just get it over with. Boy, does it feel strange though! Like very airy, maybe even like my head is wet.
I’m glad you asked the work question, Charlie. Been wondering the same myself. I’m one of several secretaries at a county school. My coworkers (and boss) are very supportive and have divvied up my tasks to cover me when I’m out. My benefits are great, including lots of time saved and a sick bank to tap into. I feel at liberty to take off any time I need. I know how fortunate I am! I took Thurs/Fri/Mon off after the first chemo round and plan to continue that at a minimum. I don’t plan to push myself.
Happy Thanksgiving, everyone!
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Ready to start TC on Monday....I’m just overwhelmed with questions, reading, etc and 😱 Scared!
When should I start the Claritin for Neulastas bone pain?
If you are doing the cold packs on your hands.... how do you keep them cold ? Or do you have multiples? Also feet?
What necessities did you take for first treatment? I’m not wanting to take a bunch of stuff I don’t need.
The steroid I got...do I take one the day before? It says as needed. I hope my MO and chemo center teach me a lot and hopefully that will relieve some anxiety...
I’ll have my second treatment on Dec 23..... is it unrealistic to want to spend some time with my grandkids on Christmas, if they are not sick? Will I even feel like it? I know everyone is different.
Thanks for any help y’all can offer, hope everyone had a Happy TG, mine was filled with worry. But I do have a lot to be thankful for, so I’m trying to focus on those things
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Dixie: I've lived in Atlanta for 23 years now.
Charlie: I have a laptop I can use from home if needed. I'm sure it will start getting used if my SEs become worse throughout treatment.
Mac: I have heard some people just stay on Claritin throughout chemo and that is my plan unless the MO counsels against it. I got a little bit of bone pain in my back, pelvis and legs last week when I hadn't kept up the Claritin and the throbbing was enough to make me get right back on it.
Margo: I started Claritin the day of my infusion. I am using cold therapy on my hands and feet and have two sets of mitts and socks that I kept in a cooler of dry ice and changed out every thirty minutes or so. I brought a lot of stuff to chemo that I ended up not using, but you have no way to know what you really need until you've done it and I would rather be over prepared than under. For example everyone talks about needing extra blankets, clothing, etc. because chemo rooms are cold. And since I was icing, I figured I'd be extra cold, so I brought all kinds of things to keep warm. Turned out the room was actually warm and I didn't need any of it. But I will probably still bring a little of it next time just in case things are different for my second infusion.
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thanks so much a Karen! Do you have a link for the mitts and socks? Many on Amazon are sold out.
What do you do with then when you have to go to the bathroom
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Margo, I had the same anxieties before starting chemo. I think we all did. It seems pretty straightforward until it starts approaching, and than you suddenly have questions.
Monday is a chemo day for me too. I'll start taking Clartin tonight (Friday), steroids start on Sunday, and I don't start taking my prescription nausea pills until I feel like it's time. My chemo starts with a saline drip, than pre-meds of a steroid, and a nausea med thats supposed to last until Wednesday, than they start the chemo drips after that. I'll get the Nuelasta patch when I leave.
I brought too much stuff with me. I used a large purse and set up a chemo kit. Most of it has gone untouched. You'll want some water, maybe some snacks, and, something to keep you entertained. My hospital has food, drinks, and a TV for me, and I still prefer bringing my own stuff just in case nobody offers me anything (unlikely, but who knows).
The steroids will have you feeling good for the first few days. I recommend taking them on a schedule that will work around you sleeping. For example, I took my first dose at 9am, which means my second dose was at 9pm. I was up all night. Stupid mistake. This time I'll set my alarm for 5am, or even 4am. It's worth the trouble.
You'll notice when the steroids start to leave your system. It's not a dramatic crash, but you'll know when your body doesn't have the extra help. As the week progresses you'll experience different side effects as some of them might take a little longer to develop. But, of course, everyone is different. I was paranoid about nausea (that seemed to be the big one that everyone brought up), so I took a pill on Tuesday night, and then another each time I felt even the slightest bit off. But, even then, I didn't need more than one dose in an 8 hour period. I had headaches, so I kept tylenol nearby as well.
Good luck. We'll be doing it together.
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Dixie, thank you soooooo so much! You’ve been so helpful!. Is the Claritin just once a day?
Hope your treatment goes well Monday also. How many have you had
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The Clartin that I have is one a day. I actually bought the Costco brand, but it's the same thing. Theirs is $14 for a years supply, it's a great deal if you have access to Costco.
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I guess I don't know the initials yet. I am having Docetaxel (Taxotere) and Cyclosphorsphamide (Cytoxan). What are those initials?
I just got back from breast construction doctor and one of my incisions has been leaking. Looks like I get an unexpected surgery on Tuesday to take it out until after chemo.
I'm frustrated......
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Thank you Dixie. I’ll start the Claritin. My MO gave me Tramadol for expected bone pain. It didn’t help much the first night after the Neulasta because of the insomnia. None of it was unbearable though. Being anxious is just me I guess.
To all...something I learned from chemotherapy 8 years ago...when your hands and toes start “feeling funny” begin soaking them in a solution is a quarter cup of regular vinegar to a gallon of water. I followed this for 12 weeks of Abraxane and then 4months of FAC. The chemo builds up under the nails like salt and you can lose a nail or have neuropathy. The vinegar soak was very helpful to prevent both. I never used the cold therapy. But my scalp hurt so badly when my hair started coming out, I don’t think I could have managed the cold.
Margo...hope your chemo goes much better than you hope for!
LisaK...I wore a wig the first time. This time I have two wigs mostly for fun. I want to learn how to tie scarves so I will feel fashionable. And not look like “Benjamin Buttons”
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CathyWH. TC are those initials. So sorry you have to go back to OR..... are they sure it’s not a seroma? I had a seroma that had to be drained twice, was done in the office. Did they culture the drainage? Your situation might be totally different from mine though
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Margo: I posted links to my cold caps, mitts and socks on November 17 in this thread, should be page two I think. When I had to use the bathroom I just slipped off the mitts and the socks
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Karen, thx! They need to put a “ like” button on this site
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To my fellow TC ladies: anyone having issues with odd feeling skin all over when not taking the nausea meds every eight hours? My whole body feels weirdly sensitive and almost tingly if I miss a dose. I wasn't thinking I would need to take it so continuously between infusions but I am so uncomfortable with those sensations I can't imagine not.
Also, without Advil or Tylenol several times a day, my joints really begin aching. Anyone going through that?
I'd really hoped I wouldn't need all these meds so often, but I am miserable without them
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