July 2020 chemo club
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Susiemommy...never too late! Welcome and feel free to say whatever is on your mind. It is why we are all here. We journey together through this chemo hell!!
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Well the Big D reared its ugly head the other night. 9 rounds in 6 hours. So I contacted my oncologist and she is going to take prejeta out for my remaining 3 infusions. I certainly hope that stops this battle. She ordered tests to check my electrolytes and others stuff. She also recommended I eat salty foods. Weird since I started chemo I have been super sensitive to salt. Even crackers are too salty.😔 I will have to try a few of the tips on hydration. I have not tried Gatorade only the powerades.1 week to infusion 4. These next 6 weeks can't go by fast enough. My surgeon has scheduled my surgery for December 1! MERRY CHRISTMAS to me.🎅
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I was drinking gatorade at first, but it was a little hard on my digestive track and since I'm also struggling with the big D I decided to try the pedialyte that the nurse recommended. The big warning with the pedialyte is that it is sickeningly sweet by itself -- I have to dilute it a lot to make it palatable -- but once it's diluted it tastes okay and more importantly, it's much easier on my digestive track.
Iamloved -- hearing your struggle with perjeta makes me worried. My diarrhea has gotten a little worse this cycle (only cycle 2 for me) and the Imodium is starting to struggle some to keep it under control. So far the most Imodium pills I have taken in a day has been 5, but I took those 5 pills in 4 hours, which was disturbing.
Welcome Sussiemommy -- it's a terrible club to join, but we're happy to have you here.
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Melbo...My oncologist took it out for my 2nd round. I still had some Big D but better than round 1. She added it back for round 3 but at 50%. I was happy to hear she is stopping it for my next 3 rounds. If this big D continues after round 4 I may have to stop treatments or she will have to figure out which drug to take out for my last rounds. It really does keep you down😞 K have noticed my hands aching the last few days. Not tingling but kind of stiff and achy. 🤔
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I had infusion #4 late on Tuesday because of the holiday Monday. I seem to be more tired and my taste buds are gone already. That makes me sad. My blood work was down in the dumps a bit...but still able to have chemo. They will watch it next time and may need a transfusion. My potassium was also low, so they prescribed me with some giant horse pills...which I can not handle. My Angel of a pharmacist is checking on some different pills or a powder I can take instead.
I got the ok time make an appointment with my surgeon again around the first of November, so schedule surgery for later that month. Happy holidays of recovery for me! Which includes my birthday. Oh well, at least it will be done, and hopefullY covid disappears and doesn’t prolong this process.
Welcome susiemommy... this is a very supportive group, I hope you find it helpful
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Anybody who is ahead of me, did you notice perhaps that about the time you were approaching round three, you were having more trouble emotionally, like mentally tired? Is that just a thing, or is it me? Physically, my labs are fine, and I don’t have any physical issues to contend with. But this next one coming up just seems mentally harder somehow. Like down in the dumps and just want to cry thinking about it.
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I'm really late, but I'm joining in. I've been lurking here with you a bit and decided I should make my presence known. I just finished my 4th chemo treatment today. It was a bit rough to gear myself to get back there today. Cycle 3 was pretty rough. The fatigue lasted a full 2 weeks and I never got back completely like I did the first 2 cycles. They diagnosed me with an UTI today so I'm hoping that was a primary reason for the extra fatigue. Hopefully the antibiotics clear it up quickly and this cycle is a bit better. I also met with the surgeon today and have to start thinking about what I want to do for reconstruction. I'm having a masectomy on left breast only. Do I want an implant or should I do the DIEP? Pros and cons to both so I need to figure that out. Thanks for letting me come in late. This cancer thing really does run you down and is not easy! You are all warriors!
KMom- I do find it gets mentally tougher as time goes by. At first, I was all "I got this. I'm a strong woman! Let's go!!" type of stuff. Now I'm just tired and frankly bored with the whole situation. (Tired mentally, not just physically.) It just drags on for so long. I spent the whole summer dealing with it and I still have to deal with it all through the Fall. So I get the sadness. It is hard to find joy in day to day life at the moment. I keep telling myself to look at the long game, but that doesn't mean I don't get sad and quite frankly, bored with the whole thing.
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KMom57, your last infusion sounded stressful from start to finish so it's understandable this next one would feel mentally harder. Plus, you have been dealing with this for more than a year which would be emotionally draining. Is your next infusion tomorrow? I will be thinking about you and hoping all goes well.
Susiemommy and Jenny, welcome. This is a great, supportive group.
Melbo and Iamloved, sorry to read you are having the lower g.i. problems. Thanks, Melbo, for telling us about diluted Pedialyte. Gatorade caused g.i. problems for me, although many people find it helpful.
Sounds as if a couple of us will be having surgery in November/December.
Wishing everyone a pleasant weekend with minimal discomfort.
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Hi all,
Going in for my 4th and final TC round tomorrow. Round 3 was a little harder than round 2, and as my MO predicted, took a bit longer to recover. but not significantly. I was mainly tired and out of breath longer.
Kmom, I hear you on the emotional part, round 3 was harder on that front. I just got impatient about everything and not my usual self. But I'm hoping that knowing this is my last round will help me be more calm this time. I am a little "excited" about getting this done, even though the nasty week is still ahead of me.
After I'm done i'll need a second surgery (tumor was taken out in May) to remove a small area where margins were not clean. Then, 3 weeks of radiation, then 5 years (at least) of hormonal treatments.
And speaking about hormones, I've been getting hot flashes this past week. I don't mind them during the day but they wake me up 3-4 times a night. I'll ask my MO about handling these, but have any of you pre-menopausal women started experiencing this? My sleep is my lifeline and not sleeping well is making me annoyed and extra tired.
Wishing everyone an easy cycle. I hope the smoke and fires here in CA and elsewhere are over soon so we can enjoy the end of summer.
Stay strong!
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Good morning all. I am up early as my oncologist ordered a magnesium infusion this morning due to my big D issues. I guess they are extremely low. Along with an RX for potassium. When the the NP called she said "no wonder you feel so lousy" So off I go to hopefully be over this. 8 weeks without a normal 💩 sucks! I can relate to the emotional pain. There are nights when I go to bed and just sob. It's not because of the physical trials or feelings of being overwhelmed. I just sob. So strange!
Welcome jenny2318!
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Jenny2318 - welcome. I see you’re also in Maryland. I know it’s a pretty densely packed place with a lot of options for treatment, but I’m being treated at the Anne Arundel Medical Center.
KMom — I have round three next Friday and I am dreading it. I have also started to struggle with the boredom and the impatience for all of this to be over already. It all just gets so old so fast! I don’t go anywhere, I can barely do anything, I have nothing to talk about except the extra special way I happened to feel lousy on that particular day.
Which, speaking of the extra special way I have felt lousy the last couple of days... I have had a horrible rash on my hands, which later showed up on my feet and knees. It comes and goes but it’s periodically itchy and has hives or my skin feels like it’s scaly and raised. It’s awful. I have called the nurse line several times and after a few different attempts they told me to use cortisone and benadry, which helps some. When it finally showed up on my face I got a prescription for steroids which I need to start today. I am dreading the side effects of the steroids. I also have an appointment with my oncologist this morning to him the rash, but the paranoid, depressed part of me assumes it will disappear by the time of the appointment and I will jus took like a crazy lady.
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Good morning, friends, and welcome, newcomers! Melbo and Jenny, I am also in Maryland—being treated at St. Joe’s (Baltimore County).
I have been having hot flashes too, beginning with my third treatment. I had my Mirena IUD removed right before treatment (since it’shormonal) and that triggered a period in mid-July, but I haven’t had one since. According to my MO, if your tumor is HR-, then you can expect your ovaries to go to sleep during chemo (and you’ll experience menopause symptoms) and then wake up 2-6 months after it concludes. If you are HR+ then they’ll put you on some form of hormone therapy after radiation anyway and that’ll result in menopause (or a menopause-like experience, depending on the treatment option you elect).
Has anyone explored CBD or THC (micro-dosing) for chemo-related nausea? I take zofran, which is effective but causes constipation, and compazine, which makes me sleepy, and I’m interested in other options.
“I have nothing to talk about except the extra special way I feel lousy that day” 😂🤣 Yes!!!! This!!!
I am going to go eat pie for breakfast because why TF not?
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Apparently Maryland is a popular place to get breast cancer. Who knew.
It turns out that my MO, along with 9 other doctors, is leaving the Anne Arundel Medical Center but can't legally tell me much about why he's going or where. I do have a choice though: go with him or stick with AAMC. The problem is that I like both. The only doctor I have seen consistently so far in this process has been my MO and he listens to my questions, makes sure I have space to ask questions, and explains everything in ways I understand. I really like him. On the other hand, my care has been seamless at AAMC. and I have never once had a question about what comes next in the process or who I needed to be talking to. It is a little disturbing that 10 doctors are leaving at once though... Anyone have thoughts?
Also my rash is a random, rare, allergic reaction to... something. There are at least 6 drugs I'm on that could cause the reaction and since one of them is the chemo itself, it makes it hard to do any sort of elimination. The plan for now is to try to control the symptoms the best we can and i do a certain amount of sucking it up. The good news is that it's much less itchy and less widespread today so that's something.
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Thanks iamloved!
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Melbo: Perjeta gives me a rash. It has gotten better over time but a day or more after every infusion I get a rash over my eyebrows and a few spots on my cheeks. I was prescribed a lotion that really helps. BUt yours sounds much much worse. I hope you can find the cause and get relief.
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Thanks for the warm welcome and a special hello to my fellow Marylanders, Melbo and AnnaTheBrav!
Melbo- Small world because I'm also getting treatment at AAMC. And my oncologist is in the same group that is leaving. It is a little nerve wracking to think about switching oncologist in the midst of treatment. I noticed you are Her2 positive like me and I assume that means you will do the targeted therapy for a year. I went into the infusion center today to get my post treatment shot and mentioned the doctors leaving to the receptionist and asked her if we'd be able to move with our oncologist and still receive treatment at AAMC. She said she didn't know how it was going to work, but she thought it likely that there will be a transition period where they will still treat us. She said they are going to hire more doctors, but as you mentioned I can't imagine they will come up with 10 doctors in by Oct. 22 when the practice is leaving. It is a bit nerve wracking, but what isn't nerve wracking in 2020? I hope your 3rd treatment goes well. Too bad we have our treatments on different days. If we were on the same schedule I could do a round around the infusion center and meet you. I'm sure I could work it in to the 6 hour infusion time. Haha!
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Happy Saturday ladies!
I’m so sorry to hear about the stress you Marylanders are going through with your oncologists. You’re already dealing with enough. Hope the decision proves to be an ‘easy’ one for you if that’s even possible.
I’m also sorry to hear about the emotional toll this has taken on many. BC is certainly the most significant thing I’ve ever had to deal with in my life. While I feel pretty upbeat most of the time, I’d be lying if I said there weren’t any emotional times for me too.
I go for my 4th AC infusion on Monday. I’m trying hard not to focus on the 12 weeks of Taxol ahead and instead celebrate the end of AC. I dread the upcoming bone pain and just can’t wait until it’s over. But feels like a milestone!
I hope everyone has a Wonderful weekend ahead!
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Post chemo shot? I'm not getting one of those... maybe because you're ER+? Who did your surgery? Were you happy with it? I had my first consult with Dr. Buras and if I stick with AAMC I will likely just roll with having him do the surgery.
My MO is Dr. Bridges, AAMC just assigned me to him, but I really ended up liking him. He mentioned that if we went with the group of doctors we wouldn't continue at AAMC, but he couldn't legally say much beyond that, which seems scary to contemplate. I have a lot of good things to say about AAMC so far, I have never had a question about what comes next or who I need to talk to next -- they have just set up all of the appointments and told me when and where to show up and answered any questions I might have had. I have no idea what to choose at this point.
Right now, the best case scenario is that I have a complete pathological response (CPR) to this first set of chemo, then surgery and radiation, then continue Herceptin infusions until I've reached a year -- so at least until next August. If I don't have a CPR, and from what I've read it seems pretty rare, then Dr. Bridges plans to switch me to Kadcyla, which will require at least a year of infusions. Either way, I still have a lot of treatment in front of me.
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BlusteryDay, it appears I am doing the same chemo regimen as you. Even though I've only done the first round of Taxol, I find it (so far) to be so much easier than AC. Also like you, I had HORRIBLE headaches with the AC - and I do not have a history of migraines. With some modifications to my premeds and the addition of fluids, that eventually got straightened out. Maybe you've researched or your doc has already told you, the premeds for Taxol are to stave off an allergic reaction - which they will still watch for carefully your first time. At least that's the protocol here in Louisville. The worst part for me was the double dose of Benadryl. I don't know that I've ever taken it before, but WOWZA. The overwhelming (and competing) sensations of drowsiness and restlessness just about drove me mad. My advice is: if you can go to sleep when you first start to feel it - go for it. Anyway, that passed and the rest of the infusion was pretty unremarkable. I've only had occasional little twinges of bone pain since then - not enough to even warrant a Tylenol. BUT, my second round had to be canceled because my blood counts were so low (which was really annoying because I was so ready to rock and roll and get this thing over with!). But the nurses were simply aghast about different aspects of my labs and kept dangling the threat of a blood transfusion over my head, so I got the week off. Did you do the Neulasta following your AC? I did, and now I will have to have a daily Neupogen injection following each Taxol treatment for the same reason. As for those red blood cells, I don't know that I can do anything more than what I'm already doing to try and boost those. Still trying to run my ass off (there's more than now than there used to be - thanks chemo!), and increasing red meat in my diet (mixed feelings there). OH, and for the icing hands and feet, I'm looking now for some thin cotton gloves to wear under the icing packs. From what I understand and my one experience thus far, direct contact is just not sustainable.
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Melbo- My post chemo shot is Fulphila. It boosts my WBC counts so I'm less likely to get an infection. I don't know why I get it and you don't because we are on the same chemo regimen. My oncologist is Dr. Werner and I would like to stay with her as well. My last chemo treatment is October 22 which is her last day so. Then I do have to continue with the targeted therapy (Herceptin) every 3 weeks, but she mentioned that during those treatments I don't see her as often. She seemed to indicate that I could keep her as my doctor and still stay at the AAMC infusion center, but maybe I misunderstood because it was all pretty vague with the "I'm not allowed to tell you where I'm going." (And actually maybe she was just saying she could get me through the treatments I needed through my surgery date.) Since I'm getting a masectomy I probably won't need radiation so it would make it easier to switch over to another center. It is all a bit nerve wracking.
I haven't had surgery yet, but I met with my surgeon this past Thursday and as long as my chemo continues on schedule then surgery will be the week before Thanksgiving. I really like my surgeon (Dr. Liang). She is great at listening and trying to make recommendations based on what I tell her is important to me.
I hope we both get that CPR! Both Dr. Werner and Dr. Liang seem to think it's looking great so far. (I have several tumors, but the one that is easy to feel is almost gone.) I'll let you know if I figure out anything else about the oncology situation and I know that you'll do the same for me. Good luck!
Brittonkb- I know everyone different, but I've been on Taxotere (which I don't know if that is different from Taxol) and haven't experienced any bone pain. So hopefully you won't either.
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Sorry to go "Off Topic" but has anyone experienced your cuticles thinning? Also my half moons are gone on my finger nails. Not sure what that means. I am hoping my nails can hold for the last 3 treatments. I have iced my hands during taxatore. It makes me nervous for the 2nd half.😒
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Hi ladies! I hope the weekend is being kind to all... I just wanted to pop by and say that this 4th cycle has seemed like a cake walk compared to 3. I know someone was dreading #3, and I have to say that I was also very worried headed into that infusion...and it was rough on me. I don’t know if it was the mindset and worry going into it or what. This time, food does not seem to taste as bad, or maybe I’m just getting it all figured out. It seems like all I do is wait to take a pill, and then see if I feel better, and then wait to take another pill. I’ve done a better job at taking Claritin for the bone pain this time, starting days before my infusion, and I plan on taking them daily because I do have seasonal allergies anyways. It has definitely helped. My mo also put me on potassium...which is a horse pill! And I do not do well with pills. Luckily my pharmacists are angels, and I can chat with them through an app, and they were able to get the potassium in a different form so I don’t have to swallow the huge pill! My weight has been fluctuating between cycles, so I’ve really been trying to eat smaller meals more oftenthis time. I think it’s helping with nausea. I’ve been eating a lot of watermelon and cantaloupe...and had a heavenly baked potato and sour cream for dinner. I just hope that the goodness of today, sticks around and I keep improving. My mo also ordered me to get fluids 3 times next week instead of the usual once...so that should hopefully really put a pep in my step.
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mtspacekace...When I picked up my Rx for the potassium pills, the pharmacist asked me if I had trouble swallowing pills. I said not usually. She handed me the bottle with the 6 pills and I said well I may gave trouble now! Horse pills indeed! She stressed the inoortance of a full glass of water and food as they can literally burn the a hole in the stomach. Well I have gotten 4 of the six down. 2 tomorrow and hopefully never have those again! Glad you have #4 under control!! I hope it continues for you.
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iamloved....you only got 6?! I got 30!!!!! They ended up giving me liquid that I mix with Gatorade, and eat food with it too. My pharmacist definitely stressed all of the above!
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iamloved — not off topic at all! I kind of hijacked it a bit with my medical center stuff. My nails have been surprisingly fine with treatment and are still growing and need to be trimmed occasionally. I am not icing during treatment
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I forgot to mention, I have noticed my nails are more brittle...I get a gel manicure before each chemo cycle and have not noticed anything really different, except for them being more brittle. I am not icing either.
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I'm late to the party... I started chemo at the end of July. I'm on taxotere and cytoxan and just finished my third round. It definitely hit me... I already had my mastectomy in June. Emotionally, mentally, physically this round has been hard. I haven't had time to read through the entire post, but I'm glad there's groups like this out there. I should also mention I'm cold capping but have thinned significantly... I'd say about 60% thinned but only I can tell. I also have two little kids which makes everything so much harder... Patiently waiting for the days to feel better and waiting to not feel super anxious everyday.
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hello everyone! It's been about a week after my 3rd cycle and I'm starting to feel better. Usually after a week my face rash breaks out which it's starting today. I am looking forward to the 3rd week before my 4th infusion since that's when I feel my most normal. Question-is anyone having issues with their elevated liver enzymes?
Kmom-can you explain the elevated ALP? I know mine are elevated but nobody has said anything. Or is that the liver enzymes? I know my liver is irritated.
Ampmusic-welcome
I have 2 littles (6 and 4) and I can't tell you how hard things have been. Virtual learning, working, chemo 😩 I'm exhausted! I keep telling myself when this is all over I'm taking a vacationFor those that already had a mastectomy...what were your must haves to get your through recovery?
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Annathebrave, I took CBD oil as needed though my AC infusions. I took it mainly for headaches and anxiety and sleep, but I also had very little nausea through all 8 weeks. Hard to tell if that was the reason or not - but there it is. I do know you just have to be really careful in choosing which kind - there are lots of BS brands out there. And be sure to let your doc know. Mine was totally fine with it (which was a surprise to me). Hope you're doing well.
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My cuticles have totally disappeared but my nails and fingers don't hurt. I also have Mees lines now, which are pale white lines on the nail caused by the toxicity of the chemo. I am not icing. My nails are still growing but quite slowly.
Thank you for the CBD tip! I’d like to give it a try.
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