Starting Chemo June 2019
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had second chemo yesterday. Kept ice in my mouth and have been using xyligel. Seems to be a little better.
Hope everyone is feeling ok. Thanks for the advice. I got the magic mouthwash and have my baking soda too.
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Thank you for the warm welcome everyone!
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Hi folks,
I start taxol, Herceptin and Perjeta on Monday 8 July for IDC. So far I've gone through a couple of MRI-aded biopsies to determine grade/stage/hormone status. I'm ER/PR negative and Her2 positive, hence the immunotherapy. I'm terrified of starting the chemotherapies because I have either allergic or weird, unexpected reactions to a lot of medications, I don't really know how my body will react, which is making this quite a bit more scary.
I must be making Amazon a small mint, buying suggested chemo "kit" items, including cold hand and foot wraps since I'm taking Taxol.
Will there be a starting chemo in July group started?
Thanks for listening everyone!
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AlexandraS - glad to hear your second infusion went ok. You're well stocked up for the sore mouth now so hopefully, your SEs won't be as bad.
dvhmouse - Hello! You're more than welcome to join this little group if you like - I had my first treatment right at the end of June so I'm a bit further behind than most of the ladies here. Chemotherapy is frightening. Or should I say the IDEA of chemotherapy is frightening. I was scared too - I don't think you'd be normal if you weren't! Your medical team will be closely monitoring you and at the sign of any kind of reaction they will slow or stop the infusion. Remember, they have done this many, many times before and know exactly what to look for. You are in safe hands.
I can't tell you much about Taxol as I think that's going to be my last 3 cycles but plenty of ladies here have had experience with it and can give you lots of tips and advice. The one my oncologist told me about was painting my nails a very dark opaque colour. The nail bed becomes very photosensitive and so blocking out the light really helps.
Dogmomrunner - how are those counts?
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Catching up again! I love how much activity our little group has!
byumom2 - I hope your treatment went well on the 2nd! Thinking of you!
summersday - I haven't worried too much about getting sick or infections. My MO said I won't be fully immunocompromised, so I just need to take basic precautions. Hand washing, sanitizing, stay away from anyone known to be ill, etc. My daughter came down with a cold literally the day after my first round of treatment. I managed to avoid catching it even with her all over the house. After my last round, I didn't feel much like leaving the house anyways so I didn't have to worry too much about being exposed to anything. Chin up, you'll be ok!
fairydragon - Welcome
I joined this group even though my treatment was the end of May. Anyone can start a July group if there isn't one already, but you're welcome to be here too! I hope your first treatment goes smoothly and wish you minimum SEs!love4mykids - When my blood counts drop I usually get the super fatigued feeling. Everything aches and feels weak, I feel like I have to breathe a little more deeply to get enough air, and I get winded pretty easily from simple tasks. It starts to improve after a couple days, though this time around the fatigued feeling has lingered around more than last time. I'm not on Neulasta, they told me I wouldn't need it unless I started having trouble getting my counts back up. I'm not actually *in* Worcester, either, but I travel there for treatments. And I'm also at St. V's
They've been so good to me, I really love it there.dogmomrunner - I'm sorry your counts didn't rebound enough. I hope you were able to get some sleep though. I'm still struggling through the nights, even without the steroid.
alexandras - I also suck on ice during the Taxotere part of chemo. I thought it helped a little bit at first this past round, but then the burnt tongue feeling showed up after a few days anyways. Hopefully it works better for you! The Cytoxan dries up my mouth almost immediately, so I keep biotene spray and hard candies in my purse along with drinking tons of cold water. That definitely helps.
dvhmouse - welcome to our little group! If there's no July group, you can probably start one. But you are so welcome to hang out with us too! I hope your first treatment goes well on Monday!
As for me, I'm still plugging along as best as I can. I can't tell if I'm coming down with a cold or if my allergies have gone haywire from being outside a little more. My nose started absolutely pouring last night, and I've got a terrible sinus headache along with the runny nose this morning. I took some Claritin-D which helped with the stuffiness, but I'm still blowing my nose a lot. Fingers crossed it'll go away in a day or two.
As far as residuals from the last treament... I still have a bit of the burnt tongue feeling, though I can taste food now. I've noticed a bit of tingling and numbness off and on in my lips, which is weird. I'll be talking to the MO about that. I'm also still feeling a bit run-down and fatigued. I don't know if that's due to the lowered blood counts, or the sinus thing I have going on, or lack of sleep. I've been doing OK with falling asleep at first, but I have a hard time staying asleep. I usually wake up sometime around 2 or 3 to use the bathroom, and then I can't seem to do more than doze for 20-30 minutes at a time from then until my room gets too bright to be able to sleep any more. I'm not usually a napper, but I may try to take one today since we're going to a July 4th bbq this afternoon. Oh, and the hot flashes. Absolutely relentless with the hot flashes.
I think that's about it for now. I hope all my US buddies have a happy and safe 4th of July celebration. And for everyone else, have a wonderful week. Warm healing thoughts to you all xoxo
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Well, my nerves have shot through the roof and sleep was fleeting last night. Took my first steroid dose this morning and got my blood work done. Now I'm off to a Reiki session in the hopes it will help settle me so I can get a good night's sleep tonight before chemo tomorrow. I know I am in the worst time, that period of not knowing so your brain blows things completely out of proportion. I have never been good with medical procedures and have both anxiety and depression which certainly adds a yucky twist to these things. I almost wish I could just get it done today.
Ugh.
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Welcome dvhmouse! I’m another Hormone -/HER-2+. They will go very slowly on Monday because there are those who have reactions to the drugs. Some have a reaction to the pre meds. But you are in good hands. All the nurses/NPs at my infusion place know their stuff.
SIMSAgreen - my nose has also been running even with Claritin. Sometimes its bloody which may be that the sinuses are dry. Sorry about your sinuses!
My hair is about a half inch. Husband clipped it down yesterday.
I hope my WBC is good enough next week because I really don’t want to be put on something to boost it. The plus side is that I got some sleep last night because of the no steroids. I didn’t get any pre meds with the Herceptin. I do have a headache but no nausea.
Hope all you ladies are doing well.
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Welcome dvhmouse! I am a her2+ like you. I just had my 6 taxol & Herceptin on the 2nd. I am one of those extremely sensitive people! My body has hate relationship with the treatment. Get red and rashy the day after in fusion so I do oral steroids for 2 extra days... definitely frustrating. Would love a full 8 hours of sleep for once. My platelets and wbc have been good, but my rbc’s keep dropping a little each week. Trying to incorporate more red meat into my diet to hopefully help with that. I hope things go well for you!
summersday, I hope you start to feel better. I had some crazy chest stuff early on. My onc said the chest & neck pressure is from the steroids. Ugh! I met with a psychologist this week and she has given me a list of things to do to try and relieve my stress & anxiety. Will see how that goes.
SIMSAgreen, thanks for the thoughts! Treatment day was good. Got a little emotional when I finally got to sit in chair for treatment that is located along a floor to ceiling window overlooking the Mississippi River. I was so overwhelmed with that little bit of joy that I made my infusion nurse cry too! Wish I could get that seat every week!
Hope everyone has a good week. As for me, trying to fight off the fatigue and trying to keep my varicose veins happy, & all the other crazy SE’s I have
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Fairydragon - I'm an anxiety/depression sufferer too so I completely understand how you feel. I just cannot stop worrying about my temperature. My PICC line was hurting so much last night I went down to A&E (again) this morning and waited an hour and a half in tiny little room only to be told that I didn't have a blood clot as there was no swelling and that there was no sign of infection as there was no redness or discharge. I asked the consultant why it was hurting and he pretty much just shrugged his shoulders saying that I should just soldier on through it! I told him how scared I was of getting an an infection and he said casually, if you do it's no big deal. Come in straight away and we'll fix it. He then commented that I should probably get a hobby.............
There's nothing like a casual consultant to put your mind at ease................................!
ByUmom2 - thanks for your good wishes. I really hope I can get a grip on this because at the moment, it just feels like I am existing and not living.
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Summersday - I don't know about you, but being dismissed like that just upsets me more. Not that I would do anything about it. My Reiki session helped, but now that I finished my running around I can feel a bit of the anxiety creeping back in. That or the steriods are messing with me. 😜
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Fairydragonfly - how did your first session go? Thinking about you......
For me, my anxiety stems from irrational fear so for someone to dismiss my fears means that I really don't need to feel fearful.......if that makes any sense? I put my trust in the A&E consultants who have seen it all and know that if they're are not concerned then I don't need to be either. The idea of getting an infection is scary but FAR less scary when someone who has dealt with these things says that it's completely fixable if and when it happens.
I think once we've got one cycle under our belt, we'll have a better understanding of how our bodies will feel on each day and so we can start to build a new 'normal'. As crappy as this is, I think being able to predict how the chemo will effect us will curb the anxiety. Well, that's how I feel anyway!
It's day 7 for me and I feel like I've been run over by something VERY heavy. Judging by what the ladies on this thread have said, this is completely normal as this is when my white blood count will be at it's lowest. Therefore, no anxiety about this. Tried to do some working from home as I felt more positive today but trying to compile spreadsheets was near impossible!
SIMSAgreen - thank you for your advice about the infections. You're completely right of course! Lots of hand washing is the key! And I note what you said about the WCB drop. Feeling it today........................big time!
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dvhmouse - the steroids really mess me up. I can't sleep and feel like my heart is racing. Or the alternative - like now where I am so tired that I feel like I can barely move. The all night fireworks did not help!
summersday is right that once you get 1-2 treatments under your belt, you figure out things that help you manage the SE. Unfortunately, some SE you have to kind of live with. For many it's the nausea or the hot flashes or the wonderful runny nose.
ByUmom2 - congrats on #6! I'm scared of heights and the only times I've been near The Mississippi River has been in a car. I was terrified. But looking at it from the safety of a building might be kind of cool during a treatment.
Fairydragonfly - I hope your treatment went well
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Hey all, I just thought I would join in the June club. My wife just had her second round of chemo (AC) on July 3rd. They are dose dense every two weeks. The first week her symptoms were pretty rough she did the full medications as recommended. She had very little bone pain since she took Claritan. This week she did much better on this second round. She dropped some of the anti-nausea medication. She is just taking the steroids and Claritan. Her tumor shrunk from 7.3 to 6.5 after the first round, yay! Drinking a lot of water seems to help the most.
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Welcome MattD77, hope she continues to do well with her treatments and minimal SE’s.
Hope everyone is doing ok today. I am definitely feeling the fatigue and of course my emotions are all over the place...0 -
welcome MattD77! I'm glad the treatment seems to be working for your wife. I read on here about taking the Claritin so I added it into my meds.
ByUmom2 - I am also feeling the fatigue. I was hoping to be able to sleep better since I didn't get the steroid this week but sadly no. I may try some melatonin. I hope you feel better soon
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I posted this in the July chemo group, but sharing here as well. ☺️
I am very happy to let everyone know that my first round of chemo went extremely well. Though we arrived on time, they were running about an hour behind. They took my vitals which were great and then got the IV started. Unfortunately it wasn't until the third attempt that they were able to successfully get it in. We discussed the possibility of a port, but I would still prefer not to go that route. They did feel that if they keep to my right arm it shouldn't be an issue.
The first infusion was for Taxotere. Because of the potential for adverse reactions, they start it slow and closely monitored me. If I was doing okay, they sped up the infusion. Luckily I didn't experience any adverse reactions and they were able to get it up to full speed. It still took over two hours, which I had to wear those cold mittens and slippers to protect my nails and reduce the risk of neuropathy.
Next was the Cytoxan. This one was quick (30 minutes), but if I started to get sinus pain or headache they would have to slow it down. It also meant the slippers and mitts came off, Yay! Again, I didn't experience any adverse reactions.
I have one more day of steroids and then I will likely start to feel the side effects from the chemotherapy. I'm hoping that they will be minimal and easily manageable. I will let you know how things progress in the days to come.0 -
Good Morning Beautiful, Brave Women! I am on day 10 after my second round of Taxotere and Cytoxin. I am surprised to find that while I have all the side effects I had after the first round, (mouth sores, cramping, bloating, bone pain, fatigue, nausea, insomnia), they are much more manageable. The only one which is way more intense is the metallic taste, which makes eating a chore.
I’m seeing that the first 9 days are challenging but today, day 10, I’m feeling better, almost normal. (Shhhhhh, don’t jinx it). Just as with the first round, a pretty intense rash showed up yesterday at my crown, going from ear to ear, eyelids included. I called it in the first round and was told to use hydrocortisone cream and Benedryl. If it mimics the previous outbreak, it will disappear in 4 days. It’s so comforting to have my journal to look back on to see what’s in store and how to handle it.
I am curious to see what round three will bring. In the mean time, I have a sweet spot of time before the low blood counts start to impact my energy and ability to be around people. I am planning on walking everyday and using every ounce of this resurgence of hope and good feeling to build up my reserves.
One question. Does anyone have a sore scalp? Mine is REALLY sore. I have varied what I wash it with in case that was it. My spikes are still falling out, so that might be it. It’s pretty annoying.
I hope you all are ok. Welcome to the newcomers. I think of each of you everyday and I am wishing you minimal discomfort and hopping you find the strength that resides inside of you to get through the rough days. You aren’t alone. You can do this. ❤️
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Hi tennisgirl - Good to see you here. I'm glad that your SE (knock on wood) are manageable at the moment. Are your treatments every two weeks? I am always curious about the other treatments here. Mine seems straightforward with the HER-2 status.
My scalp I swear also really sore but mostly around the crown. If I look at that area then it's mostly bald so maybe that's it. My husband clipped it down further to less than half an inch. My scalp seems to feel better if it's covered so I do bandannas at home and soft slouchy hats at work. The wig was a one day event.
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Hi all - I just had my second AC yesterday. My first AC was two weeks ago today. My hair is just barely starting to shed, though from what I'd heard I thought I'd be having clumps falling out by now. How dramatic is the process usually? I'm morbidly curious to see what the hair loss is like. I do plan to buzz it tomorrow, but I just wanted to hold on as long as I could.
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I also had my second chemo this week (on Tuesday). I was also expecting for my hair to start falling out, but my head hair is still intact mostly.
How are you managing with the rest of the side effects
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Hi DogMomRunner, my infusions are every three weeks, for a total of four. Looking forward to my third round a week from today. Looking at the finish line!
My scalp, right now, is my main source of discomfort. The rash on my crown, not in the hair line, just on my face, has gone away. But the rash all over my head is itchy, bumpy and so annoying. It’s also hard to treat with cream or ointment because it gets on everything. I go bald always, at home, but when I walk I always have a beanie or hat on and that gets messy. I’m really not sure how to treat it. Anyone else have this lovely side effect? Any suggestions?
Good wishes and thoughts for everyone today for minimal side effects and peaceful feelings.
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Dear tennisgirl1. When i got my wig they gave me a sheer nylon cap that i could wear under it if was itchy. Maybe something like that over your creams but under your beanie would work.
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I'm back from my treatment. WBC at .9 again. My MO said he didn't want to hold the Taxol again so I got it today. Tomorrow, Saturday, Sunday and possibly Monday I go for Neupogen injections to boost it. Grrrr. More time off work. And more SE just from the neupogen.
LoveMy4Kids and Mumoftwo - my hair did not start really coming out until after the 3rd treatment. It came out in big clumps until I cut it down to about 2 inches all over. And then last week I took it even shorter down to less than an inch.
tennisgirl - my head is a bit itchy at the hairline and nape of the neck. I use tea tree (occasionally) or a moisturizing shampoo. I am not wearing the wig just soft hats or bandannas. Plus I am just getting the Taxol (and Herceptin) not what you three are getting so that may be why my hair loss is different
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DogMomRunner - hope your wbcs improve and the Neupogen doesn’t give you too many more SEs to manage.
I’ve got the itchy, creepy-crawly feeling on my scalp, but no hair loss yet as I just started tx this week
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Hi dvhmouse!
I got the neupogen shot yesterday and my arm is hurting but so far no pain anywhere else. I took a Claritin (even the infusion nurse suggested it) so maybe that is helping. I go back for my second today. I may ask if they can inject it somewhere else this time so my arm gets a break.
I’ve got the itchy scalp too. And it’s painful in some places. My hair is down to almost nothing now. Think baby bird feathers. My hair started coming out in clumps around the third treatment so you have some time. And think about getting a soft cap to wear to bed soon. When it starts coming out it will get all over your pillow when you sleep. I think I probably ingested some whole sleeping. Yuck!
I hope your SE are not too bad. Drink lots of water, Gatorade and for nausea try some ginger ale. And get lots of rest!!
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I'll catch up with everyone soon, but just wanted to check in real quick.
Had round 3 of TC yesterday. Took a few tries to get the IV in, but went well after that. Feeling off and on nauseas, but nibbling small things frequently seems to be helping. Just trying to take it easy when I feel low, and move around a bit when I have a burst of energy.
I hope everyone else is doing well. Stay strong! Always remember how amazing you are! xoxo
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Hi Everyone,
So, this round of chemo was so much worse than the last. Constant nausea and exhaustion (probably because I wasn’t eating anything). Maybe this is the diet that will finally make me shed my baby weight!
And the last two days have been gross. I am shedding hair everywhere. It is coming out in clumps and it’s really grossing me out. I don’t mind the not having hair part, but the getting there is really unpleasant. I’ve been using a lint roller to alleviate some of the mess!
How is everyone else doing
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Hi SIMSAgreen - good to see you in here even briefly.
Mumoftwo - I'm sorry that this week is hitting you hard. For me the nausea for me is the worst. I have found that if I have something on my stomach on in my mouth like a hard candy or lollipop that helps. Ginger tables have been my mainstay to ward it off. As far as the hair, mine is down to less than an inch. I'm still wearing the sleep cap so I don't end up with it in my pillow/mouth. It may be time to cut is short. I'm thinking of you and all the June ladies.
I will get Taxol this week. The neupogen shots worked. WBC up to 1600 from 900. I hope I don't have to go through that again though. Even with Claritin it was painful
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Hello all - I've been quietly lost in chemo cotton-brain world for a while. I had my second AC on 7/9. I thought it was going better than the first round, but this week has been really rough. My labs yesterday showed that I'm severely neutropenic. My WBC is 0.9 and my neutrophils are only 2% of my WB cells, so my doctor-husband (he's not my doctor, but he's just my husband who happens to be a doctor) tells me that makes my absolute neutrophil count =18. Evidently that's a really important number, and anything below 500 is too low. 18 is crazy low. The oncologist didn't explain things as well as my husband did, but he did put me on levoflaxin, a strong antibiotic, as well as nystatin oral "swish and swallow" to prevent thrush. I'm not thrilled about being on a strong oral antibiotic preventatively, but my husband said I could be at risk of sepsis, so that settles the matter for me. Has anyone else been put on levoflaxin because of severe neutropenia?
In other news, my hair was falling out very easily so I got it buzzed at my salon last Friday. I'm adjusting fine. I sometimes take my hat off because I'm hot, then wonder why people are staring! It's much less of an issue for me than I'd expected. What's bothering me is that they left about 1/8th inch of stubble which refuses to fall out. It's annoying. I can pull it very easily with my fingernails, and I even (painlessly) "waxed" a bit of my head with duct tape! But it isn't coming out on my pillowcase or in the shower or in my hats. I want it gone. Has anyone else had this? Any suggestions?
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LoveMy4Kids - my wbc was at 900 two weeks ago. My MO skipped the taxol that week. They expected it to be back up (at least 1000) last week and it wasn't. I had to get 3 neupogen shots over the weekend and this past Monday my wbc was 1600. I'm surprised that they aren't putting you on neulasta or neupogen. I was not put on an antibiotic but if it happens again, who knows.
I also have some stubborn porcupine hair that refuses to go. Some of it comes out in the shower though when I shampoo it. No suggestions on how to get the rest out unless you actually have your head shaved (sort of a surgical clip) but then you risk nicks and burns (from hot clipper blades) on your scalp. Sorry!!
Nice to “see" you again
And I had my 7th infusion. The 6th Taxol. So far it doesn't look like my MO is adding back in the skipped taxol.
But we shall see. Now I'm on the steroid high. I can do anything and everything! I'm superwoman!! Contemplating housecleaning but not too seriously.0
