Starting Chemo October 2021
Comments
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Thanks for the reply about working thru chemo. Such a rookie. Does hair loss start already with first treatment
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Noodlesg I'm so sorry you're struggling with so many different challenges. I've had taste changes as well. It makes going out to eat a real drag because all the foods I really like just taste off. On the bright side, chemo is the most effective weight loss program I've ever done. Seems like I've been trying to lose weight my entire adult life and now I'm lower than I've ever been. Let us know how the nerve pain works out for you. My husband has had chronic nerve pain in his feet forever. He has found that doing stretching exercises every morning and before going on walks helps control it, but it's prevented him from running for years. I really hope we won't all end up with something like that. Accupuncture can supposedly help prevent nerve problems (but that's according to my accupuncturist). That's the only other tip I've got on that one.
Suegibs I think the hair loss depends on what chemo treatment you are getting. I've done 3 out of 4 AC infusions so far. My hair started falling out the day after the second infusion. It hasn't all fallen out, but has gotten very thin all over my body. On working through chemo, I have been working on and off. I also don't go in the first few days after having chemo, but I do continue to work from home. Even on days I do go in, I usually only go for a couple of hours, mostly because I want to avoid too much exposure. I really enjoy working, but I also find that all of the various self-care things I need to do are distracting my attention from work a lot. Still, I wouldn't want to stop completely. I am hiring another employee because I really can't keep up with everything I need to do at work through this. I'm fortunate that I manage my husband's practice and hiring extra help is feasible for us.
Oldladyblue, I'm so sorry about the rash. It's strange that we all react really differently. I haven't had a lot of skin changes yet, besides my feet being sensitive. I tend to get blisters easily if I walk too much, so biking, going to the gym, or working out on the stairmaster are working better for me than long hikes.
Infusion #3 was okay. The symptoms are predictable and manageable at this point, but it's starting to wear me down emotionally. I'm really ready to be done with the AC and the constant stomach issues. The Fosaprepitant has made it tolerable, in the sense that I'm not throwing up and I am able to eat, but feeling generally crummy for 10 out of every 14 days is starting to get old. I wish there was more of a break between finishing the AC and starting the taxol because I'm really needing to feel like myself for more than a couple of days.
I'm headed to my prayer group now and will send out healing prayers for all of you.
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Hi all, it's a really nice day here in FLA, I slept well last night, no side effects except some tingling in hands and the stupid rash that just won't stop being itchy. The Dr. gave a prescriptions for an antibiotic lotion and a hydrocortisone lotion, they are helping, but it's only slowly clearing up on my scalp. Although my feet have cleared up.
Thanks for the update Noodlessg, so sorry for your hypersensitivity and fatigue. I am wow'd at your ability to still be so physically active. Good for you! A massage sounds wonderful to me, but my white blood count is so down I am pretty much hiding out in my house. Maybe I'll do it before the next infusion (Nov 19) for my birthday (Nov 17). I was going to have a big outdoor party for my 65th birthday, but well, those plans went out the window when I got diagnosed in June. I have insomnia too. I was recommended to take Melatonin, and weirdly enough the Benedryl for the rash helps me to sleep all night too. Blue_Heron great to hear that you are able to work with your chemo! That is great! If you don't mind me asking, what allergic reaction did you have to TC that had them switch you to AC suegibs welcome to the site, different people react differently to chemo. I work from home and have continued to work daily for 2-4 hours only. I probably could have gone to the office up until now if I had an office job. I would not have been able to go out to work this week due to the rash on my head making wearing a hat or scarf or wig impossible. No one wants a bald woman with a rash all over her scalp in their office (looks awful). A friend of mine who did TC chemo 2 years ago worked as a visiting nurse all through her treatment, she barely had any side effects. GRZ7279 I think of you everyday when I have my oatmeal! My tummy is doing so well this round. Hardly any use of Rolaids at all.
Wishing you all side effect free days!
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Hi All,
Chiming in to invite you to our Zoom Meet-up for people in treatment. Here is the information in case you are interested
It's held every Tuesday at 1:00pm ET but you only register once.
Today at 1:00 PM Eastern Time (US and Canada)
Register in advance for this meeting:
https://breastcancer-org.zoom.us/meeting/register/...
After registering, you will receive a confirmation email containing information about joining the meeting.
Warmly,
The Mods
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GRZ7279 - I love how you see the silver lining in taste changes! Haha! It's so true though. A couple of days ago a friend brought over a cake, and because I couldn't taste a thing, I had 1 bite and just left it. Normally, I would have been tempted. I've lost only a small bit of weight (really not even noticeable), but I think that's probably all due to switching my diet . You know, fish, leafy greens, more fish...sigh. My nerve pain has gone, it lasted just a day, so I was really happy. I'm sure it'll come back, I noticed that on Taxol, day 3-5 is when the side effects (new and old) hit me hard. I haven't looked at acupuncture because am scared of needles (can you believe it). I'm slowly getting over the fear
oldladyblue - Thank you for the tip on melatonin, I will try it. I used to take it while travelling, but stopped many moons ago because it made me super sleepy the next day. Since I will be taking it the night before infusion, it's not a bad thing cause I'm half asleep from the pre-infusion drugs anyway. How is the rash on your neck and head? I hope it's healing well.
I had infusion #6 yesterday, half way done with Taxol, one infusion closer to recovery in this 'Journey to Wellness.' So far, the usual side effects - fatigue being the worst one. At least am okay in the morning and can get out and about and do a bit of exercise. I'm in better spirits today than a few days ago, when I wrote my last post. There are not a lot of people here who understand what am going through, they say the wrong things (unintentionally), and I'm so glad to be part of this group. You ladies get me! So a big thank you to you and your support!
Sending everyone here lots ofhealing vibes.
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Taxol #4 today. Yet another weird rash that I detailed in the Weekly Taxol thread. But was able to finish. So far my fears about maintaining weight are not being borne out and I hope that continues; with mindful eating I've actually managed to gain about 4 lbs. If I keep this up I might be able to touch the bottom end of the normal BMI range by the end. Here's hoping.
One of the tips of my thumbs feels a little "raw" so I'm watching like a hawk for neuropathy but there's no loss of sensation and no tingling. I'm wondering if maybe it got a bit over-iced. Due to the rash and having to pause the infusion for a bit and then slow it down, I was icing for closer to 2 hours than 1.
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Hello ladies,
Noodlesg I'm having a hard time with the silver lining today. I managed pretty well with the second cycle, but this third cycle with the AC is really kicking my butt. I am really disciplined with exercise, but I can still feel myself getting weaker and weaker as the days go on. I'm at the point in the cycle when I start to feel better overall, but the weakness is still getting progressively worse. Exercises that were ridiculously easy a week ago are now really hard to get through. I'm also not managing to maintain my weight this cycle. I feel like I'm forcing myself to eat all the time and following the advice of the doctors and nutritionist in choosing nutrient-dense foods, but I'm still dropping pounds. Normally, I wouldn't necessarily mind, but none of my weight loss plans involved becoming malnourished and weak. The goal was always to be leaner AND stronger. I went to pick up my bra and prosthesis today, which finally arrived (ordered it two months ago), except that now it's too big. The lady who fit me right after my surgery was confused because she and I both remember that she spent plenty of time taking all the measurements, but that's what happens when you lose 15 pounds in two months.
It's also just really hitting me today that this process is far from over. I've been doing pretty good at just focusing on these 4 AC treatments and everything I need to do to get through those, but I had a meeting with my oncologist yesterday, and she made me confront what's coming with the taxol. The nurses keep saying that the taxol will be much easier than the AC, but rashes, fatigue, neuropathy, black nails, muscle plan, and allergic reactions don't sound better. Just a different set of yuck. Sounds like all the skin stuff is just going to get worse, and my skin problems are already driving me crazy. If I walk for more than twenty minutes, I come home and find cuts in my feet. No idea how, since I wear socks and tennis shoes. I have to put mole skin on if I want to go for a hike. Bruises keep popping up in places that I have no memory of injuring. I get small cuts and tears on my hands all the time and have no idea how those happened, either.
I've been mentally pretty strong up until now, but I'm starting to feel like my worst fear is becoming reality. When I get to the other side of all of this, I'm scared that I will essentially have aged 10 years in 1. I'm still a young woman, and I'm really not ready to be old yet. But at the moment, it doesn't feel like my stubborn discipline with diet and exercise is enough to prevent it.
oldladyblue I'm so sorry you had to cancel your birthday party. I hope your people will make a HUGE deal out of the next one and really give you a celebration worth waiting for. You will absolutely deserve it after all of this. We're planning on doing Thanksgiving and I'm letting my sister come with her kids, but I'm honestly regretting that decision right now because it's the wrong week in the cycle and if this one is any indication, I'm just going to feel horrible the whole time she's here. Good thing she's a nurse and has a pathological need to take care of other people because that's probably all she'll get to do with her time off work.
Sorry to be such a downer tonight, but I really needed a place to vent. As Noodlesg pointed out, people don't really get it. You know my least favorite question nowadays? "How are you?" Particularly when people who I don't know very well and who don't know about my diagnosis ask. What exactly am I supposed to say? People are obviously expecting me to say, "Oh, fine. How's it going with you?" so they can answer "Great! Good to see you." and we can both move on with our lives because we don't actually know each other and we don't really care. But that conversation seems so fake right now that it's actually painful to engage in. I feel like I'm just lying to people, but at the same time I don't really want to impose all of my crap on every random person I see because I doubt they actually want to here it, so it's just a question that makes me intensely uncomfortable, which is unfortunate since it's the single most common question that everyone on the planet asks! Argh! At least here, we can be real. Okay, that's my silver lining for tonight. Cancer is teaching me more compassion for people who are struggling and that it's valuable to take the time to actually be there and listen to give people the opportunity to be real, rather than simply engaging in quick social banter that pressures us to hide our truth.
I appreciate you all very much. Thanks for sharing the ups and downs.
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GRZ7279 - I’m so glad you posted tonight. Reading your post makes me realize I’m not alone. Thank you for putting your thoughts out there for someone like me. I’m gearing up for my second cycle of AC in a few days. The worst on my first cycle was debilitating fatigue for 5 days, and a chemical smell that made me slightly nauseous. (it seemed to emanate from my own pores, though my hubby said he didn’t notice.) My fingernail beds are starting to turn dark and my hair is falling out bit by bit. I was fine with all of that but as the next infusion gets closer, my anxiety grows. What I’m really afraid of I can’t even say, I don’t even know. I’m just afraid. Maybe I think that I will become weaker with each round, as you describe. I’ve always been so independent. Relying on others is an unfamiliar ground for me.
I too, told myself to focus on 4 rounds. One by one, each round a success. But my fear gets the best of me and I’m dreading number 2. How will I make it through? Then 12 weeks of Taxol..worse than AC? And how about those studies that show the quality of life after chemo is worse for many of us. I remember the first 3 years of Tamoxifen with my first bc dx, and waking up every morning feeling like I’d been hit by a bus, gaining 5 pounds every month for the first 6 months and questioning how I could have felt so much healthier with cancer, than without. And to think I chose this plan because I was caught in a grey area and had to make the best choices I could.
I’m sorry you’re feeling down, but I’m right there with you tonight, GRZ7279. If I could share a bottle of wine and a laugh with you, I would. But for now, let’s just try to get through another day. Thanks for sharing and listening
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HI all, haven't been on for awhile. The second infusion the bad days hit harder and longer. Its been a struggle for me to stay positive when I feel like everything is so hard. Same experience with exercise. I do a little and it really knocks me back. I've completely lost my taste and smell so eating is a chore. I think I'm beginning to get neuropathy in feet. Weird sensations that get stronger at night. I'm struggling with wearing wig and am trying not to "hide out" all the time, but have to admit I'm very uncomfortable with the loss of hair. Thank.you for letting me be real here. Everyone keeps encouraging me, and I get it, but I can't stay positive about this all the time. It is wearing me down. Third infusion next week. Kids are thinking of visiting for Thanksgiving. Don't know how I will handle that.
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oldladyblue - my allergic reactions happened 3-4 minutes into the start of running the taxotere, so basically very shortly after it entered my body. My chest got tight and I had trouble breathing and got a rash on my chest. The 2nd time I also passed out briefly and after a while I started coughing- they administered an epi pen when I started coughing so I'm not sure whether that was my throat starting to close up or not. Both times my nurse immediately stopped the infusion and gave me lots of drugs in my iv and I immediately had about 5-6 other nurses and a respiratory therapist in my room, so they definitely knew exactly how to handle those situations, and my symptoms resolved pretty quickly from everything they did. For my first infusion they were able to try again an hour later and it went ok. The second infusion, since my reaction was worse they didn't want to try again and they sent me home. That's when my MO decided to switch to AC. The AC has been going smoothly other than the expected side effects.
GRZ7279 - I'm really sorry that you're having a tough time with the AC. It's so tough feeling tired and weak for so long! My third cycle I kept waiting for the day when my energy would return and it just didn't happen. And Elle2 and Faith-over-fear, I'm sorry you've been feeling down too. I'm just holding onto the hope that a lot of these side effects will be temporary and will get better after the chemo is all done, but I know they'll probably still be there for a few weeks after the last chemo. I'm trying to take advantage of the days I feel a little better to take walks outside in the beautiful fall weather we've been having here in New England. I find that usually lifts my mood, but I don't always have enough energy for it.
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GRZ7279 - I'm so glad that you feel comfortable venting to us. I just wanted to let you know that we totally understand. We also thank you for being here for us through our highs and lows, too. We seem to have the similar fitness goals (although somehow I can virtually feel that you're usually more fit that I am). I had the same issue 2 weeks ago doing simple yoga, it was a struggle to do something that I normally do. Same thing happened this week, actually even worse, my heart rate shot up to 155bpm after just a warm up. It's demoralizing, but I was in a better mindset this week, and it didn't bother me as much as the week before. I get a new side effect every week, this week it's mouth sore (yay). At least the nerve pain has not come back, and I'll take that. Has your doctor said anything to you about the weight loss? 15lbs in 2 months is a lot, and I actually read somewhere that most women going through breast cancer treatment gain weight. Has your doctor also mentioned cryotherapy gloves and boots for Taxol? I'm using them, there a a lot of people that swear by it. If you're considering these, do order them before you start. I got mine on amazon and am happy to share links to you if you need.
oldladyblue - Where are you? We miss seeing you here. I hope you're doing okay and that your rash has cleared up. We're thinking of you!
Elle2 - I have anxiety before each treatment, too. It's hard forcing myself to walk into the onco office, knowing that I feel good going in, but that after leaving, am going to start this cycle of icky side effects again. It's tiresome, and I wish the light at the end of the tunnel was just that much closer.
I've had a so-so week. I still continue to have problems with taste, most foods are bland. I've been trying to eat heavily seasoned & spicy foods, but now that I have a mouth sore, that plan isn't holding up well. Energy level is significantly less that last week, but I still manage an hr walk a day. Just that I sweat buckets now whereas it was a breeze before. It's been challenging on the social-emotional front this past week. I get a few ignorant comments here and there. The other day my neighbor's MIL saw me with a headscarf for the first time, and her shock horror reaction made me feel really self conscious. I also keep getting invites for lunches and dinners as it's close to Thanksgiving, and people expect me to stay out for hours on end, they clearly don't understand chemo fatigue. I can't explain enough that it's a blessing if I can do a 2 hour lunch on some days. I've been declining most invites, and the one time I did go, I woke up with a stuffy nose. Arrgh! The covid situation here is getting worse, and my doctor is going to run another antibody test next week to see if/when I should get a booster shot. She wants me to take it before AC, that was very clear. For those of you who have received a booster after the commencement of chemo, will you please share side effects? And what day after the infusion did you choose to take it?
Have a nice weekend everyone! Hope tomorrow will be a better day than today!
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Hi all, nice to see everyone is doing relatively well. Side effects are such a bear. Thanks for your posts above, will answer more tomorrow.
I've just gotten home from being admitted to the VA Hospital after my oncologist told me to go to the ER on Monday. Neutropenic fever of 99.9 and a cough/chest tightness out of nowhere. I didn't feel sick at all, and almost left the ER after 4 hours wait when a chest x-ray showed no pneumonia. But a kind nurse told me to stay as the "cake and ice cream" was starting soon. I ended up with an antibiotic IV and admission 4 hours later. White blood cell count was 1/10th of low normal. Came home last night, tired today.
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oldladyblue, so sorry you landed in hospital. Lots of rest to get your strength back up. Hope numbers come up this week - third infusion week. I do think it's effect is cumulative. I haven't been sick, but definitely had more fatigue.
Grz7279, hope you're feeling a bit better and some mental and physical energy has returned. I also felt the heaviness of it recently. Been a struggle pulling out of it, but I'm working on it:) got out for a beautiful walk today.
Noodlesg, I had same experiencewith doing yoga. - found myself struggling with some pretty basic stuff.and my resting heart rate is now elevated most of the time. Need to ask Ono about it I guess.
Best to everyone and pray a good week ahead for all.
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Elle2- I can relate to everything you are talking about here. I showed up half an hour late to my second infusion because I really didn't want to go in. I won't do that again because it caused a real problem for the nurses and I feel bad about being so rude. When I am in a better space, it does help to try and live your life one two week cycle at a time and plan something fun on the weekends that you feel better so you always have something to look forward to. You can do this!
Noodlesg- thanks for sharing your experiences with exercise. Yes, I do think we are both go getters, but I doubt I am in better shape. Just stubborn is all. We'll stick with it together. On the positive, even though it sucks to exercise and feel weaker anyway, it would probably be worse if we weren't doing it.
Oldladyblue- I am so sorry to hear about your ER visit. You are motivating me to continue turning down social invitations (although I can't say no to family) and conduct all recreation outdoors. My onco says that taxol doesn't cause problems with white blood cell counts. So much for that false reassurance.
I am in a better mental space now. I've shoved the taxol back into the "things I don't need to deal with yet, so why waste time worrying about it" box. Last weekend was my good weekend, so my wonderful husband took me and my daughters to Yosemite for the weekend. The combination of Yosemite's majestic Beauty and my 13 year old daughters' enthusiasm for photographing it was cathartic. Plus, they were all three quite content to go at my pace, so I didn't really feel like I was slowing everyone down. Now, I am getting my blood test and gearing up for my last AC dose on Wednesday. I'll have Thanksgiving prep to distract me from all the symptoms for this last round.
One gift that chemo has given me is appreciation. Since I feel crummy most of the time, I am taking advantage of the days I feel good and building a memory bank of really special days. My dad's birthday, Halloween, and Yosemite are all three golden memories that I will really treasure because they brightened up an otherwise terrible year. When I could do these things all the time, I didn't appreciate it or enjoy them nearly as much.
Sending healing prayers out for all of you and hoping you can find some space to build some positive memories of 2021.
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GRZ7279 and Avatarmaker, and everyone on this thread,
I just wanted to send some encouragement as someone recently on the other side of chemo. I also had a pretty tough time on AC, a big part of it was the anemia it caused which made me feel less like an active 40 year old, and more like a 90 year old with emphysema, I could barely drag myself up a set of stairs let alone exercise. I didn't meet my oncologist's strict criteria for "definitely giving you a blood transfusion" but was close. I did finally request a transfusion (at taxol cycle 2 - taxol didn't make the anemia worse but it prevented my RBCs from rebounding) and it made a WORLD of difference. I wanted to share that just in case you might be in the same situation. Taxol came with a whole different set of side effects but yes, overall was easier. I wish I could hug every one of you, and hope you can see there is light at the end of the tunnel!
Emily
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Just got back from my blood tests for tomorrow's second round. I became annoyed that the simple blood test was taking so long to get done. My husband finally went to the front desk and found out they had forgotten about me. GRRrrrr. So by the time I got called back, I was getting upset. Then I realized you go into the regular chemo room for that blood draw (because of the port, the nurses have to do it). The chemo room set me off and that's when I realized that I've built up this unnecessary anxiety about this whole process and I don't know why. I'm usually so easygoing. I'm going back to the Calm app to get my anxiety down. Tomorrow I'm taking my Bose Bluetooth headsets for some meditative music while I'm there. I know I need something. My husband thinks I should show up with a bottle of Jack Daniels in one hand, a vaping cigarette hanging from my mouth, some reflective shades and carry a boombox on my shoulder to inject a little humor into my infusion, LOL! Does anyone else have some suggestions?
GRZ - Your posts touch on so many issues that I can relate to and agree with. I too get that "fur tongue" feeling after chemo that just takes all the fun out of eating. I also know that I need to get my nutrition in check. I was a vegetarian for 11 years before I got the first bc. After that, I realized that it doesn't matter how healthy you try to be, bc will still hunt you down. So it is hard for me to justify giving up the Haloween candy thinking it will help. Same with the exercise - I was a bit of an athlete before bc (equestrian competitions, yoga, Zumba, recreational softball) but none of that kept bc at bay either. However, I do have to get over that thought process because, on the other hand, ignoring my health isn't going to help me either.
I think I will have to follow your lead and start planning things to do on my good week. I did decide to host Thanksgiving for the family this year. We usually have 12-20 family and friends over; I go all out on setting a beautiful table with T-Day china, wine glasses, and silver, and I love entertaining the family. My husband thought it would wear me out, but when my son asked to bring his girlfriend, her mom, and her brother this year, I couldn't say no. We decided to cook turkey, ham, and mashed potatoes and cater out the rest. It gives me the tradition of holiday to look forward to and I think it will raise my spirits.
Oldladyblue - I read about your ER ordeal on the September chemo thread that I check on. I am so sorry you had to go through all that. I also had a harrowing experience 6 weeks after reconstruction when I went to the ER with excruciating pain that turned out to be a kidney stone! When it rains... Anyway, I am glad to hear you're are getting better.
Noodles - I knew I might have difficulty with dry mouth and sores going into it. The Biotene lozenges seem to work for me because I can fall asleep sucking on them which keeps my mouth moist while I sleep. I tried the mouthwash in the mornings that seem to work well throughout the day. You can purchase them at any drugstore and might help you with the next round. I am truly sorry for the reaction you received from your neighbor. It makes me sad to hear and embarrassed because in my youth I might have reacted the same way. (Being older and wiser does have its advantages) I have been very low profile since chemo began. I just got a wig this weekend and wore it to the lab draw this morning. We stopped for a late breakfast and I caught the waitress staring oddly at me as she took my order. My husband assured me that she wasn't looking at my wig, but you can't help feel off with this process. Nothing about it seems normal anymore, or maybe it's because I fight the process so much. My life was exactly as I wanted it to be before this dx. I loved where I was in my life, I loved my career, I loved my hobbies and bc took all of that away. Yes, it's still there, but will I be able to return to that when all is done with this process? Will I be healthy enough to return to that life, or will this disease rob me of all that I enjoy as well? I can only hope not.
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Emily (mle42) - thank you for coming here and sharing! I didn't know that there could be something to help with the fatigue. From my first round, I had debilitating fatigue, laying in bed, or on the sofa barely able to get to the bathroom and most of those days are a blur. What I remember are the negative feelings of helplessness, the chemical smell and not wanting to eat. IF it is worse this second time, I may at least ask if a transfusion is a possibility. And thanks for letting us know that Taxol may be easier. Like GRZ, I can't look ahead without stressing, so it's best that I look at one day at a time.
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Oldlaydblue- I forgot to mention this morning some suggestions for probiotics. My oncologist won't let me take probiotics while I'm on chemo, but if they pumped you full of antibiotics, I'm sure your gut health needs some attention. When I can't take probiotics, I try to eat a yogurt with active cultures and a tablespoon of "Bubbies" (sauerkraut) each day until I finish the jar. Those might help your tummy a bit after your recent ordeal.
Elle2- I can't imagine how much harder this must be to go through the second time around. It must be incredibly demoralizing to be here yet again. I really wish I could give you a big hug right now. I totally get that a healthy diet and exercise may not stop the bc. (My current oncologist likes to point out that there is no food that has been proven to prevent or cause cancer.) However, it can't hurt. As exhausted as I feel compared to the way I usually feel, I still eventually reached the top of Nevada falls yesterday, and I imagine I wouldn't be able to do that at all if I wasn't forcing myself to get off the couch and get some exercise every single day. Bc doesn't have to rob you of everything in your life. I'm so glad to hear that you are doing Thanksgiving (and I hope you have some help lined up so you can rest if need be and still enjoy it). Try to sit down and look at your hobbies and see what you can still do even while you go through this process, even if you have to modify it some. For me, it's horseback riding. My instructor is great at subtly switching out physically demanding tasks for mentally demanding ones when I start to struggle too much, so that I still feel challenged and barely notice that I'm doing less physically each week unless I really think about it. Keeping my weekly lessons on my schedule is enormously motivating because I really don't want to get to the point where I have to give it up. So when I go to the gym and want to cry because shoulder-pressing a whopping 10 pounds feels too hard, I drop it to 8 and keep going because if I don't, I may not be able to saddle and brush the horse by myself before long and that's not something I'm willing to let bc take away from me. So my advice is to find something that you love and can look forward to in order to keep yourself going. We need good things to look forward to and hang onto to motivate us through the dark days. For tomorrow, I used to try to bring stuff with me to do, but since the nurses have to manually push the AC and they like to talk, it seems that I just end up listening to the nurse the whole time I'm there. Maybe ask the nurses to tell you stories of the most interesting things they've heard of people doing with their lives post-chemo. For that matter, ask them what patients have done to cope with the AC. I bet they have some motivating stories for you that will help you visualize the bc-free existence for yourself that this treatment will hopefully (finally) gift you for many years to come.
I hope you get a really awesome nurse tomorrow that you can open up to and that will really help you with some coping techniques. The good ones can be really incredible. For my part, I'll send all the positive vibes I can your way and hope you can feel them wrapping around you and supporting you through this next week's ordeal.
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Hi all, thanks for your posts, I am feeling much better now. Good tip on the yogurt and sauerkraut GRZ7279, I will go get some tomorrow! I forgot, antibiotics always mean I should get some good bacteria in me. I can't take any supplements not OKd by my Onc, but the foods will be fine. It wasn't just an ER visit, I guess my post wasn't clear. My head is still "off" a bit in its thinking. It was ER followed by 5 days in the hospital on IV antibiotics, and then shots to raise white blood cells. Gosh those shots caused tremendous bone pain. I'm not sure which chemo drugs lower WBC, but mine crashed. For sure I am limiting social events and following social distancing. A relative of mine had a recent loss of her best friend due to Covid, and she WAS vaccinated. I am pleased now that my birthday will be partyless, after the hospital, not the right time for a celebration. I will plan for one next year. I hope having your sister come for Thanksgiving will cheer you up. Let her wait on you and take care of lots of stuff for you. I can understand your emotional state totally. Mine is NOT stable right now. If you can just help yourself get through this, the other side will be better looking backwards at this struggle when it is over.
Thanks Elle2, I feel so much better after the ER and admission, but nothing is like being at home. I hope you can find some calming times for yourself. I do understand the raw bad emotional feelings, I get them too. Hi Mle42 , thanks for dropping in and offering advice. It helps me to just hear from those on the "other side" of chemo. Yes FaithOverFear third infusion! Not that I am excited to get it on Friday, but I will feel so much better with only #4 left, just knowing that we are over 1/2 done will be good. I feel pretty good overall considering my rash is gone, that was bothering me so much. Sorry you have fatigue, I really haven't struggled with that. I am getting neuropathy tingling at night especially I notice it. It worries me. Noodlessg thanks for wondering where I was, that made me smile. I understand how you felt with the shock/horror reaction from you neighbor's MIL. I scared off a neighborhood kid on a bike last night. I was out for a walk without my hat. Didn't expect to see anyone. Poor boy, he took one look at me as I approached and rode fast away. I felt sad. My rash is soooooo much better (not gone), maybe the IV antibiotics in the hospital helped. I don't know. They did give me melatonin in the hospital to help me sleep. I like that stuff. Oh wow BlueHeron that's scary, the reaction you had to TC. I'm so glad the AC is going better for you. I hate the side effects but overall I try to keep my eye on the prize for getting through chemo.
Good night all. I wish better days, less side effects, for all of you.
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thank you all for the responses. Round #2 has hit me today, but I got an extra good day yesterday so not complaining. Very fatigued, losing taste so will post more when I’m feeling better
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I had my third infusion yesterday and the neurlasta Shot today. Feeling tired, but grateful to be closing in on this journey. One more to go! Hope everyone is well and has a blessed Thanksgiving.
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Good for you getting your 3rd infusion!
I also got mine today. The doc reduced the dosage of the chemo drugs, upped my steroids to 3 days worth, sent me home with the nulasta shots, and I have an antibiotic to help combat the rash. Having some neuropathy tonight, but not much else. So I hope all goes well this round.
Elle2 hope you do well despite being hit by side effects today. My taste is off, but not awful. I hope yours doesn't prevent you from eating. I had a terrible night's sleep last night, so am going to bed soon even though it's before 9 pm.
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i have question on hair loss for those of you at this stage. I buzzed about a month ago and the stubble has not fallen out. Does it fall out, or does it stay and grow after chemo complete? Thanks for any input. Have a good day.
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I buzzed my head to 3/8ths inch a few weeks my first infusion. We both just had our 3rd. After the first, the hair was coming out in my food, my mouth, my clothes before buzzing. Ugh.
Now, there is stubble all over, and on top of my head some may have even grown a bit, but there are lots of places with little hair/stubble. The back of my head between my ears had the most, but now has reduced by about half. I sort of wish I hadn't buzzed it so short, because it felt weird on my pillow for a long time. Now that it is reduced, I sleep better, without the stubble bothering me. I'd say that 40% of my head still has hair, spaced widely. Some of it appears to be short hairs growing in white instead of brown. I use a sponge with soap to scrub my scalp gently, and there is always short hair in my sponge afterwards.
A friend of mine did the cold capping on TC, finished her 4th over month ago, now doing rads and is still losing hair. She has about 55% of her hair from before about 3 inches long, and shorter hairs growing in. It looks scraggly and not nice, but is better than being bald.
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thanks for sharing. Sounds almost exactly the same as me. Looks look some stubble growing on top as well, but cant tell if I'm imaging it or not. I thought about cold capping, but decided against. Really not liking the baldness, but part of it:( hope neurlasta shot helps wbc. It has kept mine up. One more to go oldladyblue. I do feel the cumulative effect of these. Been laid low today. Our son flies in tonight late for Thanksgiving. I hate for him to see me so listless.
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Faith-over-fear - yeah, just one more after this one. I feel the side effects kicking in today, tired, heartburn, itchy feet. I hope the shots help keep up the blood count too, I don't want another hospital stay.
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Hi all, I'm feeling better and getting a little energy back this week. It took me 9 days from start to finish, but I managed to get my Christmas tree and a few other decorations up for Thanksgiving dinner. We're expecting 14 this year and I'm looking forward to it!
Faith-over-fear My hair started to shed 2-3 weeks after the first chemo. It was coming out every time I brushed my hair. I went in and purchased a wig and 2 days later decided to go ahead and shave it off. My husband surprised me by helping and it ended up being a fun bonding experience. I also have stubble all over my head. My stubble appears much whiter/more grey than I ever was normally, but lots of dark brown as well. The stubble still bothers me when I sleep because it feels so odd on my pillow, and my scalp is very sensitive to temperature. I thought of cold capping, but just couldn't get motivated to worry about yet another issue during chemo. I also felt I needed a hair change anyway, and boy did I get it!
GRZ7279 While this is my second occurrence of bc, this is my first round of IV chemo. Thirteen years ago I had DCIS, a lumpectomy, radiation and 5 years of tamoxifen in pill form. Honestly, it was a much, much easier treatment and I sailed through it working every day. The tamoxifen was the worst of it making me feel awful for a long time, but being at work took my mind off it. I had a great 13 years afterwards, the fear of reoccurrence lessened each year. It took a couple of years to regain my physical endurance, and I suffered from heat intolerance, but I did reach a new normal. This new cancer and it's treatment is much harder both physically and mentally and I do worry that my quality of life won't be the same. I have been riding for most of my life. I love my horse (a Secretariat great, great, grandson) but the surgeries, the port, my lack of energy has put a stop to my riding. As a 17-hand thoroughbred, he requires a strong rider, and I've had my share of spills and tumbles. I sent him to a training barn to keep him exercised and occupied while I get through this. I just don't know if I'll be able to return this time and it was my passion, my life-long love. I have other hobbies, but I've lost interest, and traveling (another love) is also on the back burner. (Yes, I'm a little depressed, who wouldn't be going through this hell?) Yet I did enjoy reading about your lessons and it brought a smile to my face. Animals have such a comforting affect for us and especially the gentle giant horses. I hope riding will be the thing that brings you great comfort and gives you strengththrough this journey because it has for me for many, many years.
Next week, I'm going to talk with a nutritionist at MDA. While I know foods won't stop cancer, I would like to improve my diet and focus on nutrition that makes me feel better without having to purchase a multitude of online supplements, powders etc.
When I started this journey last summer, I imagined quick surgery and reconstruction. I now realize that I'm looking at a year before total reconstruction and I'm thinking about requesting a prosthesis so that my clothes hang more normally. Has anyone else decided to wear a prosthesis and can tell me the options, the pros and cons and how it is working for you?
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GR7279, I went and got fitted for prosthesis last week. Have to say my clothes look normal for the first time since surgery. I would recommend. It is heavier than I expected, but fitter said that helps keep it in place and when I'm wearing it I don't notice the weight.
Had weekly bloodwork after the third infusion todqy and WBC down to 3. Wondering what they consider the # not to do next infusion. Surprised me as they have held pretty good with neurlasta shot.
Hope each of you have a blessed and wonderful Thanksgiving. Wishing you all the very best.
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Wondering what people's experiences have been with blood glucose levels during chemo? Having weekly labs to mull over sure isn't doing anything good for me. My fasting glucose on weekly Taxol has been anywhere from 99-111 which I know isn't awful but my efforts in increasing exercise and decreasing Coke consumption to try to get it in the normal range below 100 seem to have no relationship to how it comes out, which is a bit frustrating. Is it a hopeless battle with the steroids and I should just stop worrying about it until after chemo is done? We can't reduce the steroids because my body tries to break out in hives each week with the Taxol and the current dosage of pre-meds is right on the edge of not being enough anyway; if anything they may increase it and that discussion is basically a weekly ritual at this point.
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