July 2020 chemo club
Comments
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Thank you for the warm welcome! I'm at the hospital now waiting for registration.
Kukalona, my doctor recommended the OPI brand nail envy strengthener. I ended up having to go to Sally's to get some. It was around $18 I think. As I haven't started I can't speak to it's effectiveness but I thought it worth mentioning.
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Hi everyone, hope you're all hanging in there! Welcome Star and Evergreen!
Kukalona, I'll have to check out those gloves/socks. I really need something better than pans full of ice! I'm definitely feeling a little neuropathy again in my fingers and toes which is driving me crazy.
For those asking about nails - I am keeping mine short and painted a darker color in hopes of keeping them in tact and healthy. I have noticed they stopped growing which is upsetting. I have also noticed my eyebrows and lashes have stopped growing as well. They aren't falling out, so fingers crossed they stay!
I am feeling alright for the most part, but am frustrated that food isn't good and I'm not 100%. Per my notes from last time, day 11 is when I turned a corner and started to really feel like myself again. Ugh, too many days to go! I hate feeling "sick." I believe the heat is a factor as well, since I can't go outside and enjoy the weather without having a damn heat stroke! Being cooped up in the house is making everything worse.
Evergreen - I actually am experiencing the opposite. Following my first round of chemo I can't feel my lump anymore. My oncologist agreed, although she warned me that complete response to chemo treatment is 30%. I have my fingers crossed, though!
Star - I hope everything goes well for you! I am not a fan of my port, but I know how much easier it is for chemo and blood draws in general, so I deal with it. It doesn't hurt, but I do find it annoying. Others have no issues with theirs at all, so I think I am an outlier. Because I am receiving TCHP, I will need my port in for an entire year which bums me out. I am considering having it removed after my BMX, but I want to hear more experiences on having Herceptin done in the arm instead of the port. Maybe it's wishful thinking!
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Smichaels, fantastic chemo response. Really happy for you. My nurse said the lump might start swelling before shrinking. I am praying to see some difference after this round. Maybe I am just too anxious? My oncologist doesn’t suggest a scan until 8 weeks after chemo start.
Getting better sleep after speaking to the physiologist who gave me more assurance.
Hope everyone have a nice day!
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Welcome Stardewyeyed! I’m on a similar infusion schedule as you. Friday will be my 2nd of 4 dose dense AC infusions, then I’ll do 4 dose dense Taxol infusions (instead of 12 weekly because I have a 5 hour round trip to my cancer center...my choice).
I hope all goes well with your port and infusion
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I tried my wigs on today...because my hair is shedding horribly. It’s so patchy, and my scalp is dry and flaky. The sticky lint roller is really helping tho! I ordered 3 cheaper wigs from a Facebook page my friend recommended. The 1st is kind of what my natural hair looks like. The othe 2 are fun wigs... I figured that now is the time to have a good excuse to have some fun hairstyles I could never have with my real hair! I got some fun turbans from amazon too. Tomorrow I go for infusion 2, so I had a mani/pedi today...I decided to not fill my acrylics and just get a shellac mani/pedi. So far they looked great under the shellac they took off. My cuticles have gotten really dry, and I got some cuticle oil I use a few times a day. No neuropathy so far. My infusion nurse said that the studies have shown that icing doesn’t really help, so I’m not...so far, so good I guess. I’m just hoping that everything goes good and I can keep the nasty side effects at bay. It’s nice to kind of know what to expect this time.
I hope everyone has a fabulous week! Sending prayers for you all!
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You look beautiful! I'd never say it's a wig!
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Stardewyeye, thinking about you as you go for your first infusion today.
Mtspacekace, the wigs look lovely.
Evergreenman, glad to read that your sleep is better.
Smichaels11, that's great you can't feel the lump!
BlusteryDay, that's such a long commute! I hope someone is with you to keep you company and/or you have great music.
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Mtspacekace...they both look great!!! Thanks for sharing!
Stardewyeye...Prayers for you today.
BlusteryDay...The 5 hour round trip is the same as mine. Happy my Hubby is able to travel with me.
kukalona...Thx for the links. I ordered some last night.
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Mtspacekace, hottie alert!!! Loving those wigs on you (especially the purple!) I am starting to feel more confident wearing headwraps when going to the store and being outside. Dressing them up with makeup and dangly earrings helps me feel more put together. Not to mention its been so stinking hot. I am hoping the mangy fuzz would just fall out already! I'd like to rock a clean look around the house, but so far I still have that monk look going on that my little guy loves to giggle about. I begged my SO to clean shave it for me but he refuses. He is afraid of nicking me and causing an infection, which I totally understand. Womp womp.
I am feeling shitty again today and a bit more emotional for some reason. I think I'm hangry, lol. Food tastes... wrong... even though I'm SO hungry. I've tried the salt and baking soda mouthrinse but nothing is really working. I even tried a 50/50 mix of liquid maalox and children's benadryl but all it did was numb my tongue. Any tips to get the taste buds back to semi normal?
I have an appointment with the plastic surgeon tomorrow. I'm hopeful she can give me some pretty boobies at the end of this chemo crap! Fingers crossed!
Star, how did it go? Hope you're feeling well!
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Smichaels: It’s too dang hot to wear wigs right now! I have some light cotton knit beanies and turbans in summery colors...haven’t quite conquered the scarves, I need to play around more. I don’t mind wearing caps, but the mangy hair around my neck looks ridiculous!
I had another reaction to Perjeta today, I got super hot this time and couldn’t breathe and was coughing. So weird. So I got a Benny and Pepcid...so fun to be wasted at 9 am lol...but I guess that is better than not being able to breathe. Everything else went well. I’m super tired. It’s gotta be from the Benadryl.
My taste buds got so bad last time...it was nice to be able to taste food normal for the past few days! I think the salt water rinse after every meal helped keep the mouth sores away...I had a few little ones, but nothing that was bad. I also try to drink lots of ice water. I’ve found that drinking it out of a glass tumbler or water bottle was the best way. Metal or plastic water bottles it just tastes gross! I ordered some fun ones with lids off of amazon. It helps.
I hope everyone else is doing well! I’m praying that I feel well enough to go camping this weekend...but we will take it one day at a time until then.
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Hello all! I have been feeling well the last week, my 2nd infusion is Thursday. Like many of you, my hair is weirdly in between shaved and bald. I noticed a huge amount of hair loss in the last couple of days so I am hoping most will be out in the next few days. Mtspacekace I love the wigs! I bought a “professional” one but also a couple fun ones from Amazon. The one I like best to throw on quick is actually hat hair- a baseball cap that looks like there is a bob coming out of it. Hysterical. I also am having a halo wig made out of my own hair so I am excited to see what that looks like too. I watched some really good YouTube videos on scarf tying- they were helpful.
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My naturopathic doctor sent me home with these vitamin A drops for my mouth and tongue. She also recommended Jason's Health mouth wash. She said the cloves in are numbing but also very healing. For the vitamin A drops I will take 3 drops daily for 1 week post chemo treatment.
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Thank you so much for all the thoughts and prayers. I made it through which feels like a huge accomplishment. My mind is mush and I'm exhausted so I'll respond in more detail tomorrow after some rest. Everyone sleep well and sweet dreams.
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Hey girls, I'm so emotional these days, losing hair is so terribly stressful. Much more than I expected, although I have a scarf and a wig prepared. From this perspective, I think the best option is to cut your hair as short as possible, probably shave it. I didn't do that, I just cut it short.
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I've been obsessively reading posts in this forum for the last several weeks. I start my TCHP chemo 6 August (3 week cycle) -- assuming I can get an echocardiogram and port placement scheduled before then. This morning I'm going for a bone scan. I was also supposed to have a CT scan just as a precaution, but my insurance said no to the CT scan, but yes to the bone scan. My oncologist didn't really think I needed either at this point, but he figured if the insurance would at least cover the bone scan then I might as well do it. I'm sure this won't be the last time the insurance will make stupid decisions that the rest of us will never understand. If they had said no to both it would have at least been consistent.
I'm trying to do as much as I can right now to prepare for the chemo side effects, but it's really hard to do since it's really unclear which side effects will affect me the worst. I'm making a run to CVS after my scan to stock up on a few things I've seen mentioned here and to pick up some of my prescriptions.
I hope you are all doing well today.
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Welcome, Melbo, we're all here to share the good and bad. IMHO, it's always good to be prepared for what lies ahead. But, although I had the info, sometimes I found it very difficult to emotionally cope with it. That's why were're here to share and cheer one another up.
I hope all goes well with your therapy.
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Good morning, everyone. I hope today has many enjoyable moments and minimal discomfort for everyone.
Melbo, best wishes to you and welcome. Everyone here is very helpful and supportive.
Millie5, yes, this is emotional and stressful. We are here for you.
Stardewyeyed, first infusion over! I hope you had a full night of sleep after your exhausting day.
Iamloved, are the vitamin A drops used like a rinse? I hope you are feeling relief.
Trynryan, that's great you have been feeling well the last week. Best wishes as you go for a second infusion tomorrow.
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Feels like the reality of this shit is hitting for a lot of us. For me, it was easy, at first, to be all kick-ass and relentlessly positive, but it is a grind, even from the very beginning. Losing your hair, even if you know it's coming, sucks. Feeling crappy, even if it isn't as bad as you thought, sucks. Contemplating your mortality extra-special sucks.
It's also a pain that the world isn't normal right now. It would be nice to go to the library. It would be nice to go sit at Starbucks. It's approximately 913 degrees with 800% humidity, and going for walks is nauseating. It's hard to find something to do to feel normal.
I'm not advocating wallowing in self pity, but it's important, I think, to allow ourselves to be pissy or cranky or teary or angry every now and then. It isn't self-indulgent. It's just objectively true that this sucks, and it's ok to acknowledge it.
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Thanks AnnaTheBrave, this is exactly how I've been feeling for the last 24 hrs
Not to mention that I've cried myself to sleep. But today, I've put my wig on (for the first time), kept myself busy and planned to go for a walk when the night comes and it becomes a bit cooler. I have my second chemo tomorrow, and that additionally brings me down.0 -
Anna, well said! This is just all so.... shitty! And giving ourselves permission to be upset about it is normal and healthy!
Millie, good luck on infusion #2. Sashay your way to that infusion room and know that its one step closer to being done. You can do this!
This is
me today in my headwrap trying to not melt in that 913 degree weather!
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Thx Smichaels11
Looking great with that headwrap! Stay cool
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Smichaels, super cute!!
Has anyone found a hat with hair that’s cheap? The only ones I can find either have super long hair (defeats the cooling purpose and I don’t wanna hack it apart and ruin it) or are $90 and don’t even look too cute (in the pictures at least—they might be fine in person).
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AnnaTheBrave A catalog I received from the American Cancer society called TLC has something called halos. Its like a headband with hair and you wear it under a cap.
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Iamloved, thank you for telling us about the hair halos. I had not seen them and they look like a comfortable option for warm weather.
Smichaels11, you look great! I like the way you have twisted the ends to the side.
Millie5, thinking about you as you prepare for your second infusion tomorrow.
AnnaTheBrave, your post captured the reality of this experience very well. It is important to acknowledge all of it and you are 100% correct that it isn’t self-indulgent.
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Iamloved, thank you or sharing the halo tops! they look neat!
Smichaels11, you look so cute in your scarf. Did you tie that yourself or did it come pretied?
Millie5, You'll be in my thoughts and prayers for you infusion tomorrow. Let us know how it goes as you feel up to it.
AnnaTheBraveyour Thank you so much for your thoughts. You are so right that we need to feel our feelings so we can move on. Stuffing them is so unhealthy and so often we are basically advised to do just that. "stay positive and strong" can feel like such a prison.
Melbo, welcome. I hope you can get it all scheduled in time. The wait for treatment was very difficult. As for CVS, I feel like my shelves at home are stocked almost as well as theirs at this point with all I've read as well. lol
Mtspacekace, you look so cute in your wigs! Did you get them all from the same seller? Are they comfy?
I've been experiencing a feeling of hyperdrive today. I think it's the steroids. Anyone else get this? They sent me home with more to take for the first few days and I feel like I can't even think straight.
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Stardewyeye, yes, I felt that with the steroids. I slept one hour the night before the infusion, although anxiety may have contributed to the insomnia, too. Mine was prescribed for three days, starting the day before the infusion.
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Send back home without the therapy. My blood cell counts are too low
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Sent back home without the therapy. My blood cell counts are too low ;(
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AnnatheBrave -- I'm definitely feeling the emotions today. I'll have two or three good days where I know I can handle all of it, and then a day where it just feels so overwhelming -- and of course this is still pre-chemo days for me.
Does the TCHP usually also include steroids? I've seen several people talk about their affects, but the oncologist didn't mention anything about them.
It turns out they couldn't get me in for port placement until the 7th. So now the plan will be to arrive at the hospital at 0530, get the port placed at 0730, and once I have recovered enough to walk, someone will walk me over to the chemo suite for my first chemo treatment. Anyone else go through this? It's clearly something they have done before because they didn't think much about scheduling it this way -- but it's going to be a really long, exhausting day.
I had my bone scan yesterday -- it came back clean (as expected), which was at least a nice confirmation. I was super frustrated with the tech who gave me the scan though -- she didn't explain anything about the process or what to expect. She told me to lay down, breath normally, but other than that hold still. No explanation of how long each step would take, no heads up that I could relax/wiggle between images, nothing. It was frustrating. Luckily they sent me a survey of how the procedure went.... I shouldn't complain too much though -- overall the breast center I have been going to has been awesome and supportive. So far I have never had questions about what comes next or what I need to do, but I also have several people I can contact if I do have those questions.
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Millie, I'm so sorry your treatment was delayed. That has to be incredibly frustrating. Did they tell you when you could try again? Or what you can do to increase your numbers?
Melbo, good luck with your port placement. Although I had a couple of weeks to heal, I've read plenty of women share that chemo was done right after placement so I don't think its all that uncommon. Chemo itself is painless, so I doubt you will feel any discomfort.
To answer your question about steroids, yes, TCHP usually requires steroids. I take decadron the night before and then morning and night for 3 days following infusion. I haven't noticed if it conflicts with my sleep because I've been taking Ativan for anxiety which knocks me out, lol. It did cause some crazy acne for me the first round, though. So far I've been okay this time (knock on wood).
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