July 2020 chemo club
Comments
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Sharon 2020. Thank you for the support. I needed it last night. My child is 13.
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sMichaels and Blustery Day. Thank you for the encouragement last night. I do appreciate it. I have been home now 4 hours, and other than a slight feeling of being hyped up, a bit of nausea, and a little tingling in my feet, i feel pretty ok. Also a tiny nagging headache whichi was expecting from the cold cap. THAT (the process) was really .....something.
The whole day though was not nearly as bad as I expected. It started out rough due to technical difficulties, but I got a super great nurse, and a great nurse assistant. They made a scary day seem doable. I'm grateful for both.
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BlusteryDay, I hope all went well for you today with your second infusion. I am glad to read you had a good week, but sorry to read that you had flank pain on day nine of your first infusion and your migraines/headaches have returned. Great that your husband could visit your birds for you today!
Dubhain and KMom57, that's great you got your first infusions done and over with today!
Millie, I hope your bloodwork was better today and you were able to go ahead with another infusion.
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Sending you tremendous love, light and support!
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KMom57 - thanks for the reply. I'll definitely look into this before I start Taxol. I hope it works for you! I'm glad your first infusion wasn't as bad as expected too!
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Good morning to you all! I hope everyone is feeling as good as possible! I have been a silent participant in this thread the past few weeks but have finally decided that it would he nice to have the support if all of you going through the same thing. I am getting ready for my 2nd chemo session this upcoming Monday, and of course have JUST started feeling myself again right before it's time to go back in.
I think I'm feeling more anxiety about the 2nd infusion than 1st, just knowing what's coming. I have also decided to buzz my hair today with my families help. I've gone back and forth on this but feel that I would have a harder time with it seeing it start to come out and not feeling good from chemo.
I just wanted to say you all are amazing and we've got this!!!!! I hope everyone gets to have a bright spot in your weekend!
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Kay0923, nice to meet you! Glad you decided to join in. I also hesitated awhile, probably because I didn’t want this to be real. This isn’t exactly a club anyone really wishes to be part of. But here we are, and I’m grateful for the support.
I’m feeling ok so far today. Woke up freezing last night, and flushed this morning. Mostly just a feeling of being tired. That could be the chemo effect or the effect of an exhausting 8 hour day and literally four to five hours of actual nearly uncontrollable body shivering due to the cold cap. My lips were, I’m told, actually purple. And my hair when I took the cap off was still crunchy like frozen. All the warm blankets in the room couldn’t warm me up, so I figure no wonder I’m achy and tired today. My body got a workout from the shivering alone. Next time, I’ll take an electric blanket.
So grateful to have you all, even if I don’t know you. And grateful I had a truly awesome chemo nurse and an awesome nurse assistant yesterday. That day could have been so much worse than it was, and honestly I was expecting that. I tell my daughter, sometimes the only way out is through. This is one of those times. So, on and through to the end. We got this.
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Perea66. Thank you!
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Welcome Kay and Perea!
The itchy remainder of my hair was driving me NUTS and causing a hell of a rash on my scalp. I sent my SO and son to his uncle's house so I could be alone and shave my head clean. I used one of the Venus razors that have almost like a bar of soap wrapped around the blades so I didn't cut myself. I had a good cry and felt so much better after. My scalp feels so relieved and the itchiness is gone, although its going to take a while to get used to how I look. I am still mourning my hair to be honest. I keep looking at our family picture on the wall from a year ago where my hair was touching my butt! Everyone says it grows back, and I know that, but realistically its going to be years until its at a length where I'll feel like myself again. Blah, sorry. Rough and emotional day for sure.
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SMichaels. So sorry you are having a rough day. I know what you mean about the hair. Have not lost mine yet, but I can say that anybody who says mourning your hair is vanity has never contemplated actually losing their hair. It’s far more than that. I’m sorry.
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Smichaels11 , I understand completely your feelings over the hair. I cried for 2 days when I lost it. I took it worse that the tumor diagnoses. I still can't look at my self in a mirror. Take it as a phase that is here now, but will go away. It takes some time - for some women less, more for others.
The break point for me was to see my teenage crying because of me, my wig and my illness. Then I realized that there are people worried about me being alive and well, and that I should respect that more than my sorrow for my hair. I also had long hair.
alt="">This is me on my way yo the first chemo. But I don't think about that anymore. My goal is to accept the new me, the one with the wig.
Smichaels11, be strong, I know it's not easy, but it's just the outside. We all have a much more important thing to fight against, that is inside.
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Smichaels11 & millie5 I feel your pain. I have not reach the itching part of hair loss but I have yet to look in the mirror at my buzzed haircut. I put a cap or wig on with out the mirror. I even use my hair towel when I get out of the shower so don't see my hair. It is very traumatic. Because I am getting taxotore the fear of permanent hair loss is always in the back of my mind. Another bump on this journey that seems to end so far in the future.😔
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Perea, thank you for the message you posted for everyone.
Kay, all the best to you as you go for your second infusion tomorrow.
Smichaels11, Iamloved, Millie and everyone, adapting to all the changes cancer and treatment throws at us is an ongoing challenge. (That sentence is so simplistic and doesn’t even begin to describe the reality of the experience.) I hope today is a pleasant day for you and, if it isn’t, I hope you are with family/friends who love and support you through all the ups and downs.
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Good morning and hope all are well today. Day Three for me, started out worse than Day Two. I guess that’s normal? Yesterday I felt fine. This morning feeling a little flu-ish. Achy. Tired. Does it get worse from here? I’m not doing Neulasta unless my labs look bad at the next visit. How much worse will this likely get this week? Kinda nervous.
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Thank you to everyone with the kind words. There's no going back so onward we go (bald heads and all)! I'm finding that every day I have moments of "Im going to die," "its stage 1 ill be fine," and "holy shit i have cancer at 30." Just like when you buy a new car and suddenly you see them everywhere, it seems like every TV and movie I watch mentions breast cancer. Now my phone gives me ads about cancer as well. I can't wait until I'm at the point where this is my history and not my present.
Iamloved, I hope you find some peace with your new look soon. Your wig looks great, though!!
Kmom, I have TCHP chemo so its a bit different, but I find that SEs are worst for me from days 3 to 11. I never feel so bad I can't handle it, more like a dull crappiness. The most annoying SE for me is my mouth. Although I havent had any sores, my mouth just feels burned and no food tastes good. It really bothers me and makes me emotional for some reason.Then I start to feel like myself again from days 12 until next infusion. Mine are 3 weeks apart.
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KMom57 I felt pretty good until day 5 but everyone is different. I have battled ongoing diarrhea since that day(15 days) and have just decided that it will be a side effect I deal with. I am going to ask my MO about dropping the prejeta for this infusion and see if that helps the big D. Somedays I feel energized and just crash the next day. So just know I am praying everything passes quickly for all our club members!
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Lamloved...did those drops work in preventing mouth sores??? and did you ever get sores previously??
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NicoleRod...I only have had 1 treatment. I will start the vitamin A drops when I get my 2nd treatment this Thursday and continue them for 1 week. I didn't have mouth sores but my tongue was definitely raw and irritated. I did chew on ice during the taxotere but the front 3rd of my tongue felt burned. I hope try a different approach with the ice this time by using cubes rather than crushed ice.
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Hello again all. I've been absent with not feeling well after my first infusion. My brain has just been so hazy that I couldn't even focus to read. Feeling a lot better today, day 6.
Welcome to Kmom57, Kay0923, Dubhain, and Brittonkb. Sorry if I missed anyone!
I'm also on the 4 AC/12 taxol course. I've only had the first. I think all the anti nausea meds are really rough on my brain. I struggle with Anxiety to begin with and I'm a highly sensitive personality so things affect me strongly mentally.
Brittonkb I'm so sorry you have to go through this with your kiddos on your own. Please reach out to us as much as you need.
SMichaels, Millie, and Iamloved I'm sorry for what you're going through with your hair. I haven't gotten there yet but I cut my hair super short on a whim at the beginning of quarantine and I cried almost every time I looked in the mirror so I can identify a little. I've always had long hair too. Recently I decided to go out with a bang and bleached it and dyed it bright pink. That has made me feel a bit better and now I've purchased a fun pink wig for after the loss. I figure I'll be wearing wigs for a next couple of years honestly. Idk if any of that rambling is helpful or not but *hugs* and please forgive my foggy brain if it was the opposite of helpful.
KMom I had it rough right from day one but I really reacted very heavily to the steriods, plus I had to go for an MRI clip placing on day three in which they gave me epinephrine. Yikes. Yesterday was slightly better and today I feel almost normal minus a little brain fog and some nuelasta pain.
Kay, I'll be praying for you round 2! Hopefully it won't be as bad!
Dubhain, let us know how you're feeling when you're up to it. Don't feel obligated to respond to everyone. Just a quick update is fine.
Love to all
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I hope everyone is doing well! I am on round 2, day 5 of TCHP. Food tasting horrible is getting really really old! I’ve resorted to chocolate premier protein shakes, and blue Gatorade...water is making me nauseous! Thankfully I do not have the mouth sores like last time...but I think they were due to an apple I ate.
Also, my hair!!!! I shaved it down with a #2 guard almost 2 weeks ago, and have lost a lot of it...but I look ridiculous with the small amount of stragglers still trying to hold on. I feel my skin texture on my head and face is quite bumpy and dandruff-ey. Anyone else experience this? I’m hesitant to shave my head because I don’t want an ingrown hair or to cut myself! I’m just not sure what the best thing to do is...
And, the brain fog! I can’t wait until my head returns to somewhat normal. I was telling my husband how I’m glad that it isn’t like this the entire time, I would drive myself nuts!
Sending all of you ladies lots of positive vibes and good thoughts as we begin another week!0 -
Hi mtspacekace,
re " quite bumpy and dandruff-ey. Anyone else experience this?"- I feel my scalp is itchy, and painful to touch. I thought to put some body lotion or cream. Any experiences?
Thx
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Good Monday Morning everyone!
Round 2/Day 4 of AC for me. I scaled back a tab on my anti-nausea meds this round and have done much better with the mental fog and physically have felt ok, too. Not a bad round....so far. I shaved my head a week ago and still haven’t noticed much hair loss, but my scalp feels SO much less sensitive. I think the anxiety of knowing it was coming was more than I could mentally bear...so the Big Shave was a good thing.
My feathered babies are doing well, too! DH went my and checked on them when I was at the clinic for infusion, and sent me videos. It was good to see they aren’t plucking out their chest feathers.
Praying for a good round for everyone!!
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Mtspacekace and Mille, I experienced the same. What was left on my head was itchy and I had horrible rash-like pimples all over. My scalp hurt and there were constantly little hairs falling out everywhere. I made the decision to use a Venus razors which has the soap around the blades to protect against cutting myself and shaved my head clean. The relief was immediate and the rash was gone within a day. I know it's not what most people do for fear of ingrown hairs, but for me it was the right decision because I was miserable. I hope you both find a way for relief soon!
Blustery, I'm glad you and your feathered babies are doing well! You are halfway done now, right? I am jealous! I am only 2 out of 6 (plus immunotherapy for a year)!
Star, oh the brain fog is real! I wonder what causes it? Is it the chemo or all the meds for SEs? Either way it sucks and makes working challenging.
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SMichaels11, I’m half finished with AC, and then 4 DD taxol will follow, in place of 12 weekly Taxol.
Good to know about the Venus razor... those are my travel razors so if I get those itchy bumps I’ll be shaving!
My $20 amazon wig came in and I managed to style it similar to my own hair. But it is so darned hot here that I don’t want to wear it :
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Blusteryday which meds did you scale back on? They have given me three antinausea. Love the wig! I'm struffling to find one I like. I want some curls in mine which narrows it down and I also want a very specific light brown. I might end up just going blond. Darker brown just looks awful on me.
Has everyone already tried the lint roller trick with the hair? I bought some in hopes they will be helpful but I guess I'll be prepared with the venus razors in case. I supposed by the times I've read, it will be me next week.
SMichaels, yes I've wondered if it's more the chemo or the meds they send me home with. I'm not taking most of them now at day 7 and my brain feels almost right. The only things I'm still taking are colace, claritin, and tylenol for the bone pain which has settled in my pelvis.
Anyone else have neck and face pain? I only had it about two days but it was severe. I couldn't even touch my face without crying.
It's a lovely day here in New Mexico. I hope you're all having a happy Monday!
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BlusteryDay, you look fantastic! Also, I was glad to read in your other post that you are feeling ok since your second infusion and your husband got videos of your feathered babies!
Mtspacekace, that's great you have no mouth sores this time, although the head/face sound uncomfortable!
Stardewyeye, glad to read you are starting to feel better after your first infusion, but sorry to read about your pain.
Iamloved, sorry to read you are still having the lower g.i. problem. Hopefully, the medical staff will suggest a solution at your next infusion on Thursday.
Smichaels11, thanks for the Venus tip. I had considered the Intuition razor, but the Venus razor looks less bulky/more manageable for the head.
Millie, sorry to read you have a tender, itchy scalp. Hope you have relief from that soon.
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blusteryday: the wig looks fabulous! I hate that it’s so hot out, I don’t want to wear any of the ones I got either!
Star: I used the lint roller trick! After I buzzed my hair short and it was falling out, I would lint roller before showering...it seemed to pick up a lot of the flakiness and then got a lot of hairs. There seemed to be areas of hair that weren’t falling out and made me look like a little old man...like around my ears and back of my neck...so the lint roller really helped even that out so I could at least wear a cap in public. It’s so hot in Montana and wearing even the thin cotton beanies or hats that cover your head is hot and looks quite silly, I think.
Smichaels: I think I may have to put one of those razors in my next pickup order...I just feel like the rest of myhair isn’t going to come out...and it’s so at a strange bald/not bald stage! Thank you for the tip!
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Star, I just spread the time out between doses on my Compazine and Zofran to every 5 hours. I hate the foggy brain feeling and it seems to be keeping nausea under control. My last two Dex pills were this morning for this round so I’m happy about that. Looking forward to a good night’s sleep soon.
Thanks for the wig compliments...just haven’t braved it around anyone yet LOL! My shaved head is too comfortable and convenient in the heat :
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BlusteryDay…you look amazing. But I get the heat issues. I wore mine to church yesterday and was a bit self conscious but I just told myself in a church full of good people very few would focus on me wearing a wig! 😁
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