November 2019 Chemo Club
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Hey y’all! Sorry to be out of touch! I had my first treatment on Monday, ( no port yet)all we well, expect the vein is dark and hard. I get my port on Dec 20, right before second treatment.
Yesterday I was just tired and woke up to a sunburned looking face, since learned that was normal.
Today some knee pain from Neulasta I assume. Taking my Claritin nightly. Also, my tongue is sore today. Other than those, everything’s ok.
For my treatment, I took a big ice pack that used with my hip surgery.....the kind you get a PT....it worked great , just putting my feet on it while Taxotere was infusing. I also took two bags of frozen peas for my hands and ate ice chips....dunno how much ice chips helped.... it was quite the juggling act though...add to those things phone, blanket, snacks, going to potty, well you get the picture. I didn’t do any cold capping. My hair is so thin already and has fallen out before when I had bariatric surgery....I have wigs, so I’m just praying for no permanent hair loss. It is what it is.
Hope everyone has a good day today. Tips for next treatment always appreciated....next one is Dec 23
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Round 1 TC, day 14
Dixie: so sorry for the late reply. I've been a completely lost cause since Saturday due to combo of SEs and a really bad cold. Couldn't even work up the energy to type. (And was wearing gloves in bed a good part of that time due to horrible chills.) I will now take the "avoid any type of infection" more seriously than I already did. I was shocked how bad a cold made things during chemo. Take the warnings seriously, ladies; they are indeed no joke. (Though I have to say when it all finally lifted yesterday, I literally felt like dancing!) I was only given compazine for home use, no zofran. And I didn't get any chat with the pharmacist when I first got it. But I'm about to refill it, so I'll try and remember to ask to speak with the pharmacist a little bit about it when I do. As for neuropathy, I have not yet had any, knock wood. No idea if that is just luck, or the fact that I've only had one infusion so far, or if my little DIY cold-hand-and-footing has helped avoid it. I'll keep you updated. How are you with all of that so far, since you are a little ahead of my in our journey?
I am also going to take up a little space here venting about an extremely disappointing interaction I had with my MO's nurse on Monday morning and asking for your help in dealing with it. As I said above, I had a bad cold (mucus filled head, hold/cold chills, body felt like it was hit by a truck, etc.) through the holiday weekend. I hadn't had a fever that I knew of (though I also couldn't find my thermometer to be sure), and I had been drinking water, but probably not enough. I already had a blood work appointment at 9:30am on Monday morning, and when I went in I was literally dripping sweat the entire time in the waiting area, wearing a mask so as not to pass anything on to other patients, and generally feeling like crap. When they were taking my blood, the lab nurse and I discussed whether I should get a bad of IV fluids while I was there, as both my doctor and a chemo nurse at my first infusion had mentioned doing if I ever felt I couldn't drink my way to feeling better. She thought the doctor would probably recommend it and hooked my up for a potential IV to my port. While waiting to go back to the chemo room for the IV, my doctor's regular nurse came to the waiting area, and in front of about 6-7 other patients said "now, why do you think you need fluids??" I told her everything I described above and she responded with "that doesn't mean you need fluids. You only need fluids if you physically can't drink or you are throwing up constantly. If you can drink and aren't throwing up, you're fine. Also, you don't have a fever right now, so you can take off that mask. You don't need that." I was totally taken aback by her snippy response and literally began tearing up. I already felt like shit, had missed my entire holiday weekend, and was now being berated like a hypochondriac in front of other patients. I told her that I had just been assuming I felt bad as a result of my cold and the chemo SE combination, to which she said "how many days out are you? Twelve days? No, you should be fine." At which point I just said "that's fine. If it's just the cold and fluids aren't going to help me, then I certainly don't need to take a chemo chair away from someone else who might need it, so let's just get me unhooked." But then she said "and what's with this 14 pound weight loss since your infusion if you haven't been throwing up? Is that real?" To which I really, really, really wanted to scream "no, it's completely fake. I totally found a way to rig a doctor's scale to show a 14 pound weight loss in the last two weeks!", punch her in the face, and leave. But I didn't have the energy. So I just said yes, it's real, I haven't been able to eat much while I've been sick, which apparently finally made her decide to go talk to my MO about it. A few minutes later she came back and told me the doctor said to give the fluids and handed me off to a (really nice, thank god) chemo nurse and they started the IV. When it was done, I packed up my stuff to be ready to be disconnected and the chemo nurse came over with a SECOND bag and told me the doctor wanted me to have another one. I literally responded with "you're kidding!" because I couldn't believe it. A few minutes later, my doctor's nurse came and asked if I felt any better. I told her not yet, but that I hoped I would soon. She patted my leg and said, "well, hopefully this will make a difference. Call me if you need anything else." (very nicely) and left. The change in attitude was interesting. I don't know if making me cry in the waiting room softened her, or the doctor or chemo nurse said something to her or what, but I was grateful just not to be crying in the chemo room! I didn't see her again before I left, but will definitely see her again next week at my second infusion Wednesday. I can't decide if I should say anything to her about the incident or if I should just write it off to her having a bad day and let it go. Clearly, if she does anything similar again, I will talk to my doctor about it, but right now I'm trying to consider whether she figured out how poorly she handled the situation at the time or not, and whether it might be worth talking to her about it privately. I know these nurses have seen it all and do this on a daily basis, so minor things like a cold and small SEs aren't a big deal to them, and I realize this was a crazy Monday morning after a holiday weekend, but her manner of handling my issues definitely could have been handled better. What do y'all think?
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Karen, I am so angry at what that nurse said to you, I am just shaking. I would DEFINITELY say something. Was there a chemo nurse or other staff around who witnessed this? I would go right to your oncologist or MO or whoever is in charge of that bloody bitch and tell them what happened and hope that gets her ass reamed. It's good you wrote down what was said in this encounter here so you can repeat it verbatim at your next appt. I wouldn't even wait to be honest. I would phone right away and get this dealt with. Please update. I hope you're feeling much better now!
In Charlie-land, I decided to head to the local discount hair salon and get my head shaved today. It doesn't look too bad actually. The nice surprise at the end was they didn't charge me. Whoo hoo! My head feels so soft and velvety and my chemo cap looks pretty good. Took some pics and posted on FB so my friends won't be alarmed if they see me out and about with my new do lol.
Day 3 of round 2 and still feeling pretty good. Had a fairly awful text exchange with my brother (only sibling). He figures I don't deserve compassion because a few years back when I was going through a really hard time in my life, I lashed out at a few family members. He wasn't one of them and everything has since been smoothed over. He basically said he just wants to live a quiet life with his daughter and not get involved in my drama. This was in response to a text I sent him letting him know I was feeling rather hurt he hadn't asked me how my treatment was going. Talk about scorched earth. He has always been a selfish little bastard but this cut to the bone. Trying to focus on the people in my life who are there for me right now so I don't get bogged down in the B.S.
Sending all my best healing wishes to you all. Keep your chins up high and don't let people get you down if you can help it. XO
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Karen, 14 pounds is a dramatic weight loss. Generally people gain a little weight. Somebody must have said something to that nurse, she was way out of line. I'm happy that you're on the upswing for now. I know that you have work commitments, but during chemo week, at least, take advantage of any and all rest that you can. The holidays are a rough time to be dealing with this. You missed out on the freedom to do what you wanted with your time off. It sucks. How is your hair doing? Is your scalp sore? Are you losing it yet? I didn't think I would be bothered by the hair loss so much, but it's the second hardest part of this experience, next to dealing with the actual cancer diagnosis. But, I get more comfortable everyday.
Charlie, LOL I'm a little jealous that you're hair feels soft. Mine is like velcro. But, I cut mine down to stubble. I was hoping to not have to shave my legs this winter, but the hair below my knees seems to be growing. I still have eyebrows and lashes. I don't want to tug on those to see if they're loose. I wonder if now that I'm in my second cycle, I'll have a second period of hair loss in two weeks time.
I'm thinking of buying or making a natural deodorant. Revamp the products that I use in general. I've been using coconut oil as a body lotion for a while now, and for the past few months I've been using it as a deodorant as well. But, it gets hot here, I think I need to incorporate some essential oils too. Have any of you played around with homemade body products? I know that it's trendy now, and I don't want to spend a lot of money on something that I can make at home.
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Karen - yes definitely you need to report this unacceptable behaviour to someone. That is SO rude of her.
Dixie02 - are you telling me that I still have to shave my legs? I thought I was going to be free for some months. Sigh 😔 Good luck with making deodorant. If you find the right combination I’ll buy it from you 😃!
Margo - Glad your first infusion went well. Was Claritin prescribed to you by doctor?
I’m going for my chemo class tomorrow. We’ll see how that goes
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Karen: that is such unacceptable behavior. I have been a nurse for a long time and any nurse should know not to act that way. So unprofessional ! Let alone a HIPAA violation! I would definitely not let it go! She should be fired!
Eigna: I was told to take over the counter Claritin, but it’s sure isn’t helping. Hope it’s better tomorrow. Anyone have any other remedies? Tylenol didn’t help either
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Charlie, Dixie, Margo and Eigna - that you so much for your support about my awful nurse. I have not yet reported her as she and my doctor are both out of the office today. And my doctor will be at the BC conference in San Antonio next week when I'm there for my 2nd infusion. But I will definitely talk to her about it, maybe even both of them.
Interestingly, after all of that mess on Monday, I ended up with another little medical surprise last night - a UTI. Apparently it's a fairly frequent issue on Cytoxan. Since neither my doctor nor my nurse were going to be in today, I bypassed their office and went to urgent care this morning for the labs and antibiotics. I'm sure I'll get fussed at for not going to the MO's office, but this way was much more expedient and I was just not up for another Monday! Luckily I have AZO Standard in my house all the time, so I was only uncomfortable for an hour or two last night. (if you've never used it for a UTI, go get some! It is a godsend!)
I feel like every day I come up with some new little SE that just wants to bring me down, damnit! But I actually feel really good today and plan to bask in it for as long as this damn body will let me!
Dixie: no, I haven't started losing my hair yet and my scalp isn't sore yet (though maybe that's my next SE!).
Margo: your first infusion experience (and post experience) sounds pretty similar to mine, except for the sunburned face the next day. I didn't have that. How much do you wear the wigs that you already have? What has your general experience with them been? I'm really hoping mine are comfortable enough that I can wear them regularly to work without too much effort, just to get my money's worth out of them alone. Also, two of them are pretty cute and I'd like to play with them a little.
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Karen: thanks for the heads up on the UTI/Cytoxan....so sorry you had to go through that on top of all the other mess! I know I need to drink more water, I just am one of these that doesn’t like it....I’ve been making myself.
I stopped wearing my wigs about a year or two ago. Mostly because they are itchy and were hot to me, especially during the summer. I liked the way they look though and didn’t look too fake. It’s just a matter of getting used to them. I found some cute caps on Amazon and they are very comfortable, The thing I loved most about my wigs were they are so easy to put on and go and require no “ fixing “ so to speak, no products, etc.
I’m getting my head shaved next Tuesday. A beautician friend is coming to do it at my house. I’m sure I’ll be somewhat nervous when the time comes.
I’m doing well except for my legs really aching. Hope everyone’s having a good day
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Day 4 Round 2. Just looked back on my experience with the first round and it looks like I was feeling pretty good on day 4 but not today. I am very tired and hungry but nauseous and feeling a little sad too. I think that's just coming down off the steroids and the cumulative effect of the chemo drugs draining my energy faster. I hope this doesn't last long but for now I am just going to try and keep my liquids up and eat something that contains some kind of nutrients. It's like all I want is bread or crackers- I need vitamins lol.
Does anyone else experience the "chemo blues" during their cycles or is it just me?
Tomorrow will be a better day
Take care,
Charlie
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This round is similar to the first one. It hit me Wednesday night, and Thursday was my bad day. I got out of the house, but only for a short time. I just don't have the energy to do much.
I also crave carbs during this week, Charlie. I'm hungry, but I don't want anything too complicated. I just need to find something that I want to drink. I do sip on water, but flavored things aren't appetizing right now.
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me too Charlie and Dixie,
I just want easy carbs.....crackers, rice, ( with cheese), I have had scrambled eggs a few times and that’s good. I need to find something I like to drink also. I love iced tea but it just doesn’t taste right.
My tongue just feels kinda raw, but not unbearable and doesn’t seem to be getting worse. At times, the bone pain is just unbearable. I know I sound like a big baby. I do have some bad arthritis, so I wonder if that is making the pain worse. This morning is seems better so hopefully that will continue.
I hope everyone has a good dayand weekend!
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Margo - can you take Tylenol for the bone pain
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Margo - I am so sorry about your bone pain. If it is unbearable at times, I hope your doctor will let you have at least advil or tylenol, if not something stronger, to help. That is miserable.
As for the wig issue, it looks like I will be addressing it soon. My hair just started falling out today - but so far only on the left side! I was really hoping it would be more uniform. I was going to give it a day or two of shedding before I shave it, but if it's going to fall out one sided, I will have to rethink that! What is everyone else's experience with this so far?
Charlie - I definitely had the blues (what I call a pity party) earlier this week when I was really feeling bad. Am better now that I physically feel better. I hope your day today was better.
I am so dreading starting all of this over next Wednesday with the second infusion. Particularly now that everything will be combined with a bald head. Bleh.
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Margo, Charlie, Dixie -How are you ladies doing?
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Hi Eigna.... Day 6 and I’m much better! Bone pain has subsided! Yay!! So happy for that! Today and yesterday, I’ve mostly been just real tired , almost like when you have the flu. I take at least 3 naps a day, lol! My mouth is a little raw feeling, not painful and somethings just taste weird. All things I can deal with, thankfully!
Hope everyone is doing well today
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Hi Eigna,
The past couple days have been rough for me physically and emotionally. I am on the upswing now though and hopefully will get better each day like last time
Yesterday I ate like crap and that probably has a lot to do with why I was feeling like crap lol! I need to stay on top of the anti-nausea meds. I thought I would see if I could last longer without them but that's just silly. They are there for a reason so I need to take them. No point suffering needlessly. I am looking forward to doing the fun shopping for Christmas this week. By fun I mean the stocking stuffers. I will also make some cookies for my partner's sons (we sure as heck don't need them). They are all grown young men and they do love their sweets so it's fun to bake for them.
Thanks for checking in. The first week after the chemo infusion is the worst! This too shall pass
Looking forward to updates from you and everyone
Charlie
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Hey, guys. This second cycle is unfolding just like the first, though it doesn't seem as bad now that I know what to expect. Today is the day that I start feeling bone pain, just like last time. The constipation is turning into loose stools (I wouldn't call it diarrhea). I'm happy about that, though. And, my tongue feels like I burned it on something hot, but I didn't.
I don't have any plans this weekend. We have some parks that do Christmas lights, maybe I walk through one of them.
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Dixie02- how many days does bone pain lasts? Are you taking Neulasta? Do you have a sore throat?
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My mouth and throat aren't bothering me as much as they did during the first cycle. My throat really isn't much to speak of at all, mostly just my tongue. I did gargle with the salt/baking soda/water from the beginning this time. Last cycle I didn't start that until later in the week.
Yes, I do the Nuelasta onpro. For me, the bone pain was only on Saturday last cycle. I thought that I wasn't going to experience it at all this time, but it hit me a little later in the day. I'll let you know how long this one lasts. Out of all of the side effects, this is one of the worst. It's an ache similar to what you feel while having a fever, and a throbbing that sometimes occurs. Does anyone else feel throbbing? Mine happens in my lower back, pelvic, region. It causes me to move a little slower, maybe walk with a bit of a waddle, who knows? LOL But, I was able to catch up on household chores, and walk around the park. I wasn't doing any of those things on Thursday. It just sucks. I was a little short tempered with the family because they were trying to help, but they were in the way, and the dogs were running around... pretty much just a build up of the past week culminating into me being frustrated. I suspect we'll all get frustrated as each cycle goes by. The first week we're figuring it out, and then each subsequent cycle is "another F'ing week that we have to go through this again", you know?
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Dixie - can you tell me if your scalp is still sore and sensitive? I am shedding in earnest now, three days prior to my second TCinfusion. If I shave my head in the next few days, will my scalp be too sore to wear a wig right away? I'm hoping the soreness and sensitivity will stop once the hair is gone, but haven't seen any specific posts about it.
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It's a little sore still, but not too bad. You'll probably find it easier to wear a wig. I don't even notice the soreness when I'm wearing a hat, I only feel it when I rub my hand along my scalp, which I do often. I'm happier to not have to deal with visible hair loss. Like the hairs stuck to clothes, in the sheets of the bed, brushing against my skin, falling along my body while in the shower...
I did make the mistake of going too short. We used a guard on the electric razor that gave me a short crew cut. It was nice. Then, I showered a day or two after, and a lot of those hairs were falling out. Because I was wearing a hat in public anyway, I was like "screw this, I'm just shaving it all off". So, I used the electric razor with no guard, leaving me with stubble. The stubble is what sucks. It's like velcro. I notice that they fall out easier in a hot shower because the heat opens up the hair shaft. I also read that since the hair isn't growing, there's nothing to push the stubble hairs out, so they're just sitting in there being annoying. Last night I wound up using duct tape and removing it that way. Sounds crazy, but it worked and it didn't hurt.
Anyway, long story short, don't go too short LOL, and, the soreness may last throughout the entire treatment I don't know.
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Oh, on a side note... I still have my eyebrows and lashes. I'm sure that I've jinxed myself now but, so far, they're still there. And, while the hair on my legs did grow, I don't think it was the usual pre-treatment growth. I shaved my legs yesterday, so we'll see how that goes.
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Dixie: Thanks for the hair shaving details. I am a little confused about what you said about going too short.
Here’s my scenario: I’m getting my hair cut or shaved tomorrow morning- Day 8 from my first TC. I know it’s a little early but with the holidays coming it gets a little complicated. I’m having a friend / hairdresser come to my house to do it.
Should I go with a total shave or get like a crew cut? I have wigs and caps. I don’t want to be in scalp pain if I don’t have to be. My hair is baby fine already . I have also heard to put coconut oil on your scalp. Have you heard of that or are you putting anything on your scalp?
Thanks for any help you can give.
I have felt good today and yesterday.... yay! I wonder if I will feel good from now on until my next treatment?
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Well, I got impulsive after my last post and went to the hairdresser and shaved it all off. I couldn't bear the idea of possibly waking up tomorrow with large clumps falling out. She took it down to a crew cut first, but that looked awful on me, so we just completely shaved it. She told me to just massage it in the shower for the next day or two and it will probably all come out. And for now at least, my scalp I much less sore. I think I could probably wear a wig tomorrow if I want to. We'll see!
As for eyebrows and eyelashes I've heard those don't go until much later- sometimes not until after your last infusion when you think you're safe. But I've also heard the eyelashes come back fairly quickly. Fingers crossed
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I wish that I had either kept the short crew cut and just dealt with it falling out, or gotten a smooth shave (which I can still do). What I have now is like a man's beard growing in. That rough, prickly, stubble, that they get on their face. Apparently hair that short doesn't fall out as easily. The wind doesn't blow through it, you don't brush it, you can't run your fingers through it... I'll take a picture. A lot of it is white(!) but you can still see it. It's not soft. Also, I'm not wearing makeup so...
I would've guessed that those of you who have done the first cycle were already experiencing the sore scalp. I do have thick hair, and I didn't cold cap, so perhaps that's why I'm feeling it. I felt it way before my hair started falling out. It's more uncomfortable than anything. And, like I said, I really only notice it when I touch my head. Which is often because I'm still in awe that I don't have hair. I don't feel it when I'm wearing a hat (I don't like my wig) or if I'm not touching my head.
I do have coconut oil, I've been using that for years.
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ok that makes it more clear.... I doubt I will have the beard stubble since my hair is baby fine and thin. But who knows! But I think you look beautiful in your picture!
My hair is so fine I have to use about 4 products on it when I fix it , to give it body.... so I’m looking forward to putting all that stuff away for awhile.
How is everyone feeling today otherwise? My mouth is getting more sore... I just ate an avacado that was really good. Soft is the only way to go for me right now
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Scalp soreness is caused from your hair follicles being inflamed, it will go away, hugs and good vibes,
Sept chemo club
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Dixie02- I need a clarification. When you said you had bone pain, does it mean you can't do any of chores etc are you bedridden until your pain subsides? I hope it's not the case.
Thanks for the shaving tips. You look beautiful. Just let's try to remember it's temporary..
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No, I was able to catch up on the chores that I didn't do during the rest of the week. On a scale of 1-10 it's like a 3 or 4. I can feel it, but it's not overbearing. It's a difficult one to describe. I don't like it, but I can manage.
I didn't feel it much today. Little lingering moments of discomfort that I knew was because of that shot, but it wasn't constant. I know that other people have said that they feel it well after they've finished with their treatments, and with a higher severity. I'm on the younger side of breast cancer, so maybe that helps? I also only take Clartin during the week of my treatment. I don't know if our bodies build a tolerance to allergy meds? I'm really just the type who forgets to take it when it's not necessary, and I've never had to take it for anything else. So, I only take that week. I forgot to take it today, and I won't bother now.
I know that I ramble, I hope this makes sense.
One concerning thing that did happen this cycle is heartburn. I'm curious to know how the nausea meds actually work. What is it doing to my stomach? Or, are the chemo meds doing something to my heart? It's one of those ailments that's probably nothing, but I'm slightly paranoid.
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Hi Dixie, I started chemo 12/2. Heartburn actually has nothing to do with your heart. The chemo is causing excess acid in your stomach, which comes up the esophagus. Also I think the hormone suppression relaxes the muscle that holds the acids in the stomach. I had it all throughout pregnancy and also now too. I actually took Zantac and Zofran while pregnant, they were considered safe. I spent the last two days researching meds because my fav, Zantac has been recalled. I tried Prilosec and than found out it takes a while to work. Pepsid is supposedly more like Zantac so I'm hoping it works a little quicker. Just took one. You want to treat it because the acid is bad for your esophagus. You look beautiful!
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