Starting Chemo June 2019
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hi everyone! I’m heading to work for the first time this morning, I have a CRAZY story to tell. I will post today and fill everyone in. Happy to catch up on how everyone is doing, chat soon!
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Hi all!
DogMom - I'm glad things went well for your first treatment! It's crazy how quickly one can go from "this isn't too terrible" to feeling absolutely awful. Definitely akin to running into a Mack truck.
Hopefully everything continues to go smoothly for you! When is your next round?Teamortiz - Happy to hear from you! Looking forward to hearing your story!
I hope everyone else from our little group is doing well, too!
Appt with the NP on Friday went well. I thought I was seeing my MO, but apparently not. No matter, the NP is just as wonderful. Blood work confirmed that round 1 did everything it was supposed to do as far as blood cell levels and whatnot. WBC count dropped over 7k, which she said explained the feeling of fatigue and breathlessness. She also confirmed that all of my side effects were a normal part of treatment - most of them being caused by the high doses of steroids. She recommended adding a 3rd day of steroids at a half-dose level to "step-down" rather than going from large dose to nothing, and said that it should help with easing the crazy feeling of restlessness and jitters that I had last week. I was assured that everything else would return to "normal" in the coming days, likely by Monday or Tuesday - and so far, it pretty much has. Since my appointment, I have broken out with a small but super itchy rash of some sort on my thumb and pointer finger of my right hand, and yesterday also showed up on my left pointer finger. Benadryl cream seems to be the only thing to soothe it, though only temporarily. I don't know if this is a delayed reaction to the Taxotere or whatever. I was talking to a friend of mine about it, and she said it's likely because my immune system is lowered my body isn't able to fight off all the little annoyances it usually can. So things like allergic reactions and warts and stuff might be more likely to happen. It makes sense, in a way. Still, I'm going to give it another day or two and if it doesn't get better I'll call my MO's office.
Saturday I got my hair cut to shoulder length. I've never been a fan of short hair on myself, but man it actually feels really good. My head feels cooler already, and my scalp doesn't feel as angry and annoyed as it did with longer hair. It doesn't look too bad, either. And it's still just long enough I can put it in a small ponytail. I did notice a little bit of an uptick in hair coming out when I wash it. My hair has been thinning out over the past few years anyways, so I'm used to seeing it come out. But this time there aren't any new little fuzzies replacing them, and I've noticed some of my thinner patches are looking even more bare.
On a super positive note - This weekend I was gifted some beautiful scarves by the manager of one of my favorite stores at the mall. She started up a conversation with me while I was browsing the scarf display, and I shared my story with her. She offered to give me one for free to try out, and then I could come back and get more if I liked how it felt. I was trying not to cry over her generosity while she went to the back room to retrieve the one I had chosen. When she returned, she had a stack of scarves instead of just the one. She said that the corporate office sends extras every month for employees, but that they'd been sending more than needed for a while. So she had a bunch of scarves just sitting in the back that were not being used and she wanted me to have them. The only thing she asked is that I pay it forward when I was finished with them, and I promised that they would find good homes with other women at the cancer center as soon as my hair grows back. I ugly cried in the middle of the store, and gave her what felt like a million hugs and thank-yous. This week, I plan to write a letter to her corporate office singing her praises. What an amazingly kind thing for her to have done! I'm still in shock over it, honestly.
Sorry for the really long post this morning!
I hope you all have a great week, and can't wait to hear all your updates on how you're doing!
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Hi there, me again.
Day 14 post-chemo. So much for "gradual thinning" of my hair. My body had other plans, I guess. It's coming out in vast amounts pretty much any time I run my fingers through it. It's not really clumps or patches, but it's pretty significant. Looks like I'll be buzzing the rest off this weekend. And my head isn't the only place where the hair is shedding... It started yesterday, a bit further south if you catch my drift. LOL Oh well, free Brazilian
I hope you are all doing well and staying strong!!
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Hi SIMSAgreen (and everyone!)
At work today but feeling slow
I could just copy and paste the first half of your post to mine. My WBC dropped also. It was ok enough to do the chemo yesterday though. I met with the MO who suggested adding lower dose steroids to keep me from the big drop in the third day. We are going to see if I have the same reaction to this one first. Second treatment was easier and quicker. Benedryl didn’t hit me as hard and I only had to go to the bathroom four times instead of eight.
I am going to get my hair cut in a poodle do today. It will go well with the almost yellow green color of my facial skin. What is up that??
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Hi Everyone,
I will be joining you soon. I have my first chemo scheduled for June 25. I’ve read all your posts, which has been very comforting. I’m super nervous, but it’s nice to be able to share the experience with others
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I've been MIA since my first infusion, a week ago. The actual infusion was great. No problems. Day 1 after chemo was easy, just restless. Neulasta injection went off perfectly. Day 2 after chemo began good then I started with a stomach ache and nausea. The bone pain emerged as aches in my shoulders and fatigue became a factor. Day 3 after chemo was rough. Got up at 2am and stood in a hot shower for my deep bone pain. Total body bone pain. Hit by a truck felt appropriate. My mouth feels thick and different. I took some tramadol and med marijuana paste just to try to get it under control. Food tastes metallic. It feels like I have creepy crawlers trying to get out of my body. In a strange way, I am glad the chemo is doing it's job and I welcome the temporary side effects, as uncomfortable as they are. Day 4 after chemo, I still have the bone pain and fatigue, and sharp stomach pains started. I haven't been able to eat much, so I took something for constipation. Day 5 after chemo, the med worked for constipation, thank God. Fatigue and bone pain are my companions. I think of those of you who are working, or have young kids and I am humbled by the thought of even going out of the house. You warriors deserve all the praise and respect in the world. Day 6 after chemo, bone pain is less and the fatigue is better. I took ibuprofen. Day 7 after chemo, I felt weak and tired but better. I had my husband shave my head. It was wonderful! What a perceived task to get through with such an invigorating outcome. Towards the end of the day the nausea came back hard and I took meds for it. Today, day 8 after chemo, I feel pretty good. The bone pain is gone, I have energy, and I think I'm over the worst. I have a blood draw today and my one week check up. I will ask the doctor if my experience is average, or if I can do better with the ensuing infusions. I think my stomach is the lingering problem, and just need to figure out how to manage it. I am drinking bone broth instead of coffee. I'm definitely getting my 2+ liters of water in. I steamed broccoli and cauliflower, then blended them with butter and sour cream, and I heat a little cup of that everyday with cheese, to get my fiber. I'm also doing toast with peanut butter. Anyone have any other food suggestions that worked for you?
I only posted my side effects day by day, because I searched out what to expect before I started. Obviously each chemo regime has its own unique side effects, and our own bodies react differently, but it's still a comfort to know I am not alone in this crazy journey. Also, as quickly as they emerge, they get better just as fast.
I keep telling my kids and husband that as hard as some days are, it isn't forever and it will get better. ❤️
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Hi tennisgirl. It's good that you have a record of what SE on what day. Yes, do check with your team. If you can, message them before your next appt so the MO has that info available ahead of time.
The bone pain and joint discomfort, from what I've read, is probably from the Neulasta. I haven't had trouble with it but have seen many times that taking a Claritin (loratadine, and NOT the Claritin-D) helps prevent that. You can use store-brand. This time of year I take Claritin all the time for seasonal allergies. On the Neulasta day I take an extra one. I can't tell you for a fact that has helped me, but I have not had those SE.
If you want to check what others say about it, you could search here (from the left sidebar) on Claritin and Neulasta.
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Thank you MountainMia. Yesterday, my MO reviewed all my side effects and reassured me my experience is totally normal. She gave me some Ativan to have with the next round to help. I am pretty much back to normal now, other than some stomach issues.
I forgot to add that I did use ice socks (from Amazon), and they gave me ice baggies for my hands, during the infusion of Taxotere. I have no neuropathy at all so far. Also I decided not to fast before the infusion. My MO wasn’t supportive of that. I did take the Claritin 7 days after the infusion, but my bone pain was intense in spite of it. It’s just something I will have to get through, knowing it won’t last too long.
I hope everyone else is doing well. I think of you all as I go through this with you. ❤️
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Welcome Mumoftwo!
Thanks for the post tennisgirl. The broccoli and cauliflower sound yummy! I also iced (hands only) this past treatment. I plan on doing both hands and feet for the third
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I had my chemo teaching appointment today and I was told that I would not need to ice my hands and feet because I am doing Taxol. The nurse said that you only need to ice if you’re doing Taxotere. But the impression that I have received from these forums and other sources is that I should be icing with Taxol as well. Anyone else been given this advic
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Mumoftwo, she is wrong. This link from ChemoCare on taxol shows peripheral neuropathy as a common side effect of taxol.
http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx
The icing is to prevent the neuropathy.
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Mumoftwo - I plan on icing feet and hands tomorrow for my third treatment. Both my NP and MO saidtaxol SE include neuropathy.
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Hi all, I hope you're feeling well today.
DogMom - I didn't realize your treatments were so close together. I hope your next round goes well today. Keeping my fingers crossed for better WBC & easier SE symptoms. Did you ever get around to cutting your hair too?
Momoftwo - I'm sorry for you to have to be here, but warm welcomes to you.
You say the nurse told you no icing necessary, but if you're unsure of that advice I would talk to your MO about it. Don't be afraid to advocate for yourself, and if icing is something you think you want or need to do, then you do whatever is necessary for your own peace of mind.tennisgirl - It's interesting how similar, yet different, our side effects were for the same treatment. I was not given Neulasta, but was told if my bloodwork came back too low it would be a possibility. Thankfully that wasn't an issue, at least not yet. The stomach & digestion issues were rough for sure. So much bloating and not being able to "go" for days... ugh. I definitely plan to do things a little different this go-round in hopes of keeping that under better control. I like the broccoli & cauliflower mix idea, I will have to keep that in mind for my less hungry days. My husband buys "Dave's Killer Bread", which has a decent amount of fiber and is pretty delicious. We also eat lots of dark greens - kale, spinach, etc.
MountainMia - Thank you for checking in with us and for all your helpful advice!
As for me, it's been a bit of an "off" week for me mentally. I think it's just the countdown to the next round tomorrow has got me locked up in my own head. This is also "PMS week" for me, as my monthly is due in the next couple days - if she shows up at all... If "chemo-pause" is a thing, I sure can't tell the difference since my hormones are raging and everything is either making me angry or sad. This too shall pass, I suppose.
Anyways, my hair started falling out pretty heavily on Sunday. As I had some cooking to do to take to a Father's Day BBQ and I didn't want hairs falling into the food, I made the decision to go ahead and buzz my hair off. I cried while my husband took care of it for me and my daughter watched. He insists it looks better than he thought it would, but I still find it startling to see myself in the mirror without a scarf on. The way my daughter stares at my bald head when I talk to her is also a little heartbreaking. I try to keep my head covered as much as possible around her. This can't be easy for her either.
Sorry for the Debbie Downer sort of post today.
Thinking of you all and wishing you strength. xoxo
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SIMSAgreen - yes I am doing infusion right now. I get taxol & Herceptin every week for 12 weeks. We eat Killer Bread too! I love that stuff.
Icing hands and feet and whoo it’s cold!
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Oh wow. I'm about 4 days out of first round. Cut back on steroids because I was losing my marbles. Sigh
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SIMSAgreen, I totally understand how you feel about your buzzed head. My husband did mine 7 days after my first infusion. I wanted to get it over with and have some control over something in this process. He is a veterinarian, and of course we used the animal clippers. He was shaking so much, I thought he’d give me divots on my scalp. Poor guy, it really hard on him. It was so liberating for me and I was happy I did it so early. It is now day 15 after first chemo, and predictably, my little hair spikes have started falling out. My scalp started being sore yesterday, like I need to rub it to feel better. I put coconut oil on it today. I still am startled when I pass a mirror. I am conflicted about going in public in a beanie, scarf, or just bald. This is a surreal time, which I am embracing, as it means I am one step further along in my treatment and recovery.
I am gearing up for my second infusion on the 27th. My blood counts are good so far. I am thinking the second one will be like the first one. Maybe even easier now that I know what to expect. Anyone have any thoughts on that?
Here is a pic of my bald head today. I’d love to see pics of other beautiful bald heads, if you care to share. As my daughter said, “Bald is Beautiful, Bald is Strong, Bald is Brave, Bald is Badass”. She reminds me all the time that I can do this.
You each are in my prayers and thoughts as we go through this.
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tennisgirl - first thing - you look beautiful! You have very expressive eyes. My husband is also a veterinarian. He is going to cut my hair short in the next week or so. I am losing hair but no big clumps yet. Luckily we have a pair of human clippers to use since he shaves his down regularly. Good luck on the 27th. I had my third yesterday
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Hi All!! It’s been awhile. Let’s just say I’ve been in a funk and now I’ve decided I’m DONE sulking and I’m ready to fight! I’ve kept up on everyone’s progress.and look forward to reading your posts. I find them inspiring and heartfelt. Welcome to those that have joined recently, I know this is not the club you had in mind, but this club is unique and full of amazing, powerful women.
I have had 2 whammies at the starting gate. First, my mom told me that who I thought was my biological dad was not. I was raised by my step dad, so my “real” dad was always in the shadows. It sounds crazy, but I always knew something was wrong. I would ask my mom jokingly to just fess up and tell me who my real dad was because there was no way I came from who I now call DH. She jokingly would say it’s Carlos Santana. Funny right? my sister would also always say, “you’re adopted, look how dark your skin is”. DH is blonde, blue eyed as is my sister. I have brown hair, green eyes and olive skin. We are Hawaiian on my moms side so I just thought I pulled heavy from that. Well, I come to find out my biological dad is Spanish and Portuguese. Now it makes sense. I felt relieved and validated! I knew, I just did in my gut all of my life. Then my mom tells me that my bio dads ex- wife is her friend Deb, who I remember well from childhood and she’s been waiting for this day, Turns out, Deb has been following my life and my brothers have been waiting for this day too, I spoke with her and she says, “ we have been waiting for this day, we’ve loved you since the day you were born, welcome to the family”. Holy shit, this is crazy. My dad passed away in 2009, I am heartbroken at the missed opportunities, but I’m grateful for the new family. I talk with Deb nearly everyday and my brothers check in regularly. In all this mess of cancer, this is gift #1.
Whammy #2. I have completed 2 rounds of chemo. My first round was given in the hospital due to the surgeon nicking or rather shearing my left lung leaving me with a pneumothorax; aka a hole in my lung while placing my port. I was hospitalized for 9 days with a chest tube. What would normally heal in 24 hours or so, didn’t. The surgical team tried to manage my care, they failed. After 6 days in, the Thoracic team was finally brought in. Even then it took 3 more days to heal. This is very rare and I don’t want anyone who is beginning this journey to be afraid. I am a nurse and a nurse manager at the hospital where I had the port placed. They say, of course this happened to you, you’re a nurse. It was just an unfortunate event. I am still working through my anger and sadness, but like I said, I’m done sulking. It’s time to look forward and kick ass!
Advise...I had buzzed my head but now my head just looks full of whiskers. Do I just shave it now? I can’t go anywhere looking like this and I am self conscious as all of you are as well. Help!
My SE’s have been manageable. I think I am on a different treatment plan as I have Triple Negative Breast Cancer. I haven’t been nauseous, just tired and feeling off a lot. I have been struggling with fainting several times. It may be from pushing a bit too hard on power walks and yoga. I went in and had fluids on Thursday and I was told to not do “power” anything right now. My blood work has dropped dangerously low a week after chemo both rounds, so I’m on antibiotics and neutropenic precautions. Basically, I’m isolated for a few days, not fun. Round 3 is next Thursday and then I have 1 more round of AC. I will then have 3 weeks reprieve then start T for 12 weeks; this is a long road. I decided to stay out of work with the advice of my MO until this first round of treatment is over. I’m bored out of my mind and wish I had a hobby. Any ideas for a less than creative person?
I hope everyone has a nice weekend, focus on the good in your life and keep looking forward. I have been assured by my sister who is a 5 tear survivor that this is a small gift andone day I will agree. I’m hanging onto that for now...join me.
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Wow teamortiz! I guess one whammy was surprise that had a good result and the second not so good. You've been through the wringer for sure. But you've got a good attitude about it all. I'm not creative so my go-tos when I'm bored would be long dog walks, reading books or watching movies. If you can get you tube, you can watch just about anything. My wbc have also dropped but I'm not quarantined or on any other melds. Yet
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Thanks DogMomRunner for the compliment. It is a process getting used to this look. Veterinarians are the best!!! Definitely a different breed of person. I am very thankful for my kind, gentle man.
Teamoritz. You have been through so much, both physically and emotionally. I can’t imagine the strength you are tapping into. Of course you are a nurse, (I am as well), I guess hard things happen to everyone,but geeze, you are shouldering a lot. You can do this. You have such a great attitude and spirit. Hang in there. You aren’t alone. ❤️
Oh, and my little head whiskers are falling out like crazy too. I’ve been putting baby shampoo on my head in the shower and rubbing firmly with a wash cloth. It feels so good, and hopefully speeds up the whole process.
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tennisgirl - my second treatment went well (as well as the third). I started icing my hands and feet on the third and so far no signs of neuropathy. I get iv benedryl (which makes my legs twitch), pepsid and steroids. The steroids ramp up my hot flashes (post menopause here 5 years) and make I think hard for me to sleep the night of the treatment and the next couple of nights. I have low level nausea which I am treating with ginger ale and tablets, occasional Gaviscon and an essential oil for pets (GI Goe). The Zofran (for nausea) can cause headaches and I'm staying away from it for now. I take Claritin on my 2nd and 3rd days which is supposed to help with the flu like symptoms.
My husband was a computer progrsmmer/software analyst when we got married. He went to vet school after we had been married about 10 years. He had always wanted to be a veterinarian.
Good luck on the 27th. I have my 4th that day
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DogMomRunner and tennisgirl1- sounds like you’re doing great and managing pretty darn good considering! I love all the tips and tricks. Which of the drugs cause neuropathy? I thought it was Taxol but I’m not sure. I haven’t been icing through the A/C treatment, but maybe I should be? I have my 3rd if 4 A/C treatments on the 27th; I just want it over.
I will try the baby shampoo and vigorous scrub today. I was going to have my husband shave my head today. Has anyone else done that or is it better to let if fall out on its own? My head is seriously so hideous and at home I wear my winter beanies so I don’t scare my family...not so cute.
Thank you for your encouragement, we are all shouldering this heavy load, just keep moving forward!! I wish we all lived close, it would be amazing to meet the incredible women in this forum. Sending positive vibes for everyone’s next treatment, I look forward to hearing how it goes. Stay strong, you got this
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teamortiz- it's the Taxol (taxane drugs) that I get that can cause neuropathy. But other chemo drugs can also cause it. You can search on a website called Chemocare for your specific drugs and possible SE. My MO gave me handouts from that website (and others herehave used it as a resource) so it's reliable.
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I have my very first infusion in the morining. I’m so nervous, I don’t know how I’m going to sleep tonight
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You will be ok! The actual infusion really isn’t bad, the harder part is managing side effects. You won’t know how you respond until the time comes, but you should have an arsenal of as needed meds. The nurses will take excellent care of you and please know it’s ok to be scared. We’re all walking in very similar shoes, so we’ve got your back. What’s really helped me are the Scopolomine patches for nausea, not sure if you have those. Breathe easy, you got this I promise!!!!!
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just saw you’re on the sane med cocktail as me. The AC has been tolerable. The hardest part I have is the fatigue a week after infusion when my labs love to bottom out. YOU GOT THIS!!
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Thank you so much! It is so comforting being able to talk to people who are going through the same thing. I don’t know what I would do if it weren’t for this forum.
I’ll be leaving for the hospital at the same time that my kids leave for school. I wish I knew how my body was going to react and how bad the SEs will be. As long as I can avoid severe nausea, I feel like I can cope. My oncologist has thrown lots of anti-nausea stuff my way. I was super sick during my pregnancies so that’s what I’m mo
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I was really sick during my second pregnancy and I’m shocked at how settled my stomach has been, I hope the same for you. Remember that the SE’s will subside and you’ll have a chance to feel a little normal as the days go by. Listen to your body and rest. My favorite things to eat have been citrus things like oranges, lemon and lime popsicles. Your taste buds will change so done be shocked at what doesn’t taste good anymore. Smoothies are great to and you can pack them with healthy nutrients. Don’t share any food with your kiddos for 2days after chemo, ie, no saliva swapping and if your share a bathroom, wipe it clean before someone else uses it. Enough for now, trust that you’ll get through the day one moment at a time.
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Good thoughts for your first infusion Mumoftwo! Teamortiz is right that the infusion is not that bad. If you have a port and they gave you lidocaine- apply it about 30-45 minutes before you leave for the appointment. Take something to drink (I always pack ice water) maybe some snacks and something to occupy your time. If you haven't had blood work in the last week, they will draw blood first to check your stats. You will probably have to get up and use the bathroom a lot. They will go really slow and give you lots of fluids. If you get iv benedryl - it may make you loopy.
I am sure you will be fine but will keep fingers and eyes crossed for a good session. :
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It's been a long few days. I'll try to catch up as best as I can.
tennisgirl - You look so amazing! All my spikey hairs are driving me nuts. Seriously considering shaving it down to the scalp at this point. Wishing you all the best for your next infusion!
teamortiz - Wow you've been through quite a bit this month! Thinking of you for your next round!
mumoftwo - You'll get through this! The infusion is the easy part, as weird as that seems. Don't be afraid to speak up or ask questions if they don't explain everything clearly to you. I recommend just putting your feet up and enjoying the quiet time. Unless you have a super chatty nurse like I do, in which case, good luck LOL
dogmom - I hope you're continuing to do well!
Debbie Downer week continues... This round has been a little tougher for me it seems. I immediately started feeling poorly after my infusion. Fatigue and hot flashes like woah. More queasiness than last time - I'm finding that it helps to keep nibbling on stuff all day, but it sucks because even when I'm not hungry the nausea will flare up if there's nothing on my stomach. The irritability and moodiness from the steroids have been unpleasant. I'm swollen from my face to my toes despite drinking tons of water - which currently tastes terrible to me even after trying to doctor it up with fruit and flavorings. My stomach is bloated huge. My period is nowhere to be seen (which was expected) but all the uncomfortable hormonal pms-y things and cramps and backache are still there. I'm tired but I can't sleep. I'm awake but I have no energy to do anything. I keep telling myself there's only a few days of these side effects left and then I'll be back to "normal" but man I just want to crawl into a hole and wait until it's all over.
And today's my birthday. Yayyyy... Hopefully by the weekend I'll feel more up for celebrations.
I hope you all continue to do well and stay strong. Have a wonderful week and keep up the good fight.
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