Chemo starting June 2018
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I started Tamoxifen last Friday. No SEs so far. I've been so frightened to start it because of reading some of the threads on this forum. I know there are people who do fine on it. Today I was talking to a friend about how the estrogen and progesterone in my body had been promoting cancer cells to grow and this drug will stop that so why not view it as something good for me. That doesn't mean I'll blindly take it and not manage SEs if they arise but I'm going have a better attitude about it to start with.
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hi rachelcarter35...glad it is going well so far
How soon after you finished chemo did you start the tamoxifen? are you also doing radiation treatments? so far, my doctor hasn't mentioned what happens after chemo.0 -
lulabella: Four weeks after chemo I had my implant exchange and started Tamoxifen a week after that ( so 5 weeks after chemo). No rads for me. No targeted therapies also because I'm her2-. I go back to work in two weeks.
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Taxol is tough!!!!
I am 3 weeks PFC. My final treatment was Taxol + Cytoxan, not Taxotere, to try to reduce my chance of an allergic reaction. Week 2, I got horrible abdominal and pelvic and back spasms for 5 days. End of that week, I got hives, just like with Taxotere. So, heavy steroids for the next 5 days or so...that's all over now, and I've been off the steroids for a week now. At about Day 18, I suddenly started having diarrhea, and a yeast infection Down There. Taxol: the fun that just keeps on giving! So, I've started a probiotic, am taking Imodium, OTC anti-fungal for the yeast, and I will just manage this, of course, as you do, one side effect at a time. Apparently, flora in our guts are disturbed by Taxol, I see when googling this. But, obviously, I kind of already figured that out.... Have dealt with that before when on antibiotics, so I know how to handle this.
And, I've been quite breathless. Can't quite fill up my lungs. This started on about Day 14, and is a bit better now. But, for about 4 days, I couldn't inhale deeply without coughing, as if I had pneumonia, but I don't, it's just my lung tissue maybe having its own little temper tantrum?
STILL SO TIRED. Can get up and do things for a couple of hours and then have to rest most of the rest of the days, and often still nap.
I keep drinking a lot of water, eating a lot of protein, and just will listen to my body. This one Taxol treatment has been so much harder than the three Taxotere ones, so now I have a TON of empathy for all those AC +T and DD Taxol /weekly people. I'm assuming cell repair will be going on for quite awhile, so I'll stick with my high protein diet + drinking lots of water for a few more weeks.
On the positive side, my foot neuropathy kind of stopped at about Day 18 after PFC, and it has been with me since Day 2 of starting TC. Not horrible; it's been ongoing numbness and tingling, and quite bothersome because it felt weird, but it didn't affect my walking. Did make my feet feel weirdly Maybe Cold Maybe Not all the time, though.
Didn't mean to have this sound so whiny, although it was kind of therapeutic to write all this. Just sharing. Every time I read other people's SE stories, I feel less weird when I then have a SE that someone has mentioned on this forum.
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Before double mastectomies I weighed 130 lbs. Afterward 120 lbs (I had very large breasts) after fills I weighed 127. After Taxotere I weighed 143. I had my implant exchange two weeks ago . I now just wanted to let you all know the water retention is starting to resolve itself. I'm almost losing a half pound per day and am down to 131 lbs at this point. I'm walking and drinking lots of water everyday. I stopped Vicodin from the implant exchange last week. My stomach is still a bit distended from water retention and the Vicodin I think. I have a few more pounds to go. Just wanted to share some good news.
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that is so great to hear the water retention is fading.... Hope all continues to improve!
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rachelcarter, I think this is the best news i’ve Heard in months! I am looking at the scale with dismay. Where the hell did these pounds come from? Although I can see the swelling in my feet and hands, I was kind of hoping that it won’t affect my weight much. Ha! I was 136 lb after mastectomy. I am 145 lb now 2 weeks PFC. And I exercise every day! Well, some days I just walk 5 miles and call it exercise, but still! Hope my water retention will resolve itself as well.
HikingLady, I am with you in the Taxol hatred group. I am one of those lucky ones with DD regimen, and let me tell you, it was tough. Hated every moment, even when I was switched to Abraxane due to allergy. Happy it’s behind for the both of us
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Just want to mention to everyone that my recent breathlessness went on for about 10 days, starting maybe day 12 PFC. Eventually, I realized that I couldn't fill up, couldn't take a deep breath without coughing. Felt like pneumonia.
Finally went to doctor/MO yesterday; it was not getting better. Chest x-ray yesterday shows both lungs, lower 1/3 or so, with lots of effusion. Which is maybe inflammation/reaction to chemo, so I'm now on dexamethasone for 1 week. Or, maybe the "beginning of pneumonia," so I'm also on an antibiotic. And I have horrible coughing when I lie down, so doctor kindly added codeine + guaifenesin cough syrup so I can sleep at night. Of course, also I started a probiotic, since antibiotics always give me diarrhea and yeast infections if I don't also take a probiotic--asked doctor and he said Good Idea.
Labs all came back great--no elevated WBC, all other blood work just fine, so he really thinks that (Taxol, which I had for final infusion) chemo-reaction is the explanation. Pneumonia would likely send out more other symptoms, and I didn't have a fever, etc.
For 10 days, I've been weak and feeling awful, could hardly do a single thing without resting. Which I kept just assuming was the famous "cumulative fatigue" after chemo finishes, but it was that plus this. Alas.
My point in reporting yet another one of my symptoms is that this just seemed like "well, here I go, another side effect, another thing to just tolerate." BUT, it is not. It's a lung and breathing issue, needs to be treated, and my doc will see me in 10 days after ANOTHER chest x-ray that morning. I really should have gone in sooner. Too stoic.
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HikingLady - My goodness! I’m glad you went to the doctor and now on the mend. How true it is that we take on so many weird symptoms and we chalk them up to normal side effects to chemo. I was thinking the other day that I truly don’t know what it feels like to physically feel “normal” anymore. To have a great night’s sleep and have a healthy appetite and be able to do all of the things I used to be able to do during the day. What is that like???
Hope you feel better soon
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HikingLady:
Sorry to hear about the lung issues but I'm glad it was caught before it became life threatening.
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HikingLady, so sorry about the lung issue! Glad you went to the doctor. But sorry you have to take so much crap
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hikinglady: I feel horrible that I might have kept you from looking out for yourself when I said I was breathless from water retention and that it was just resolving itself. Perhaps I had a milder version of what you are going through. I'm so glad you got checked. Keep us posted.
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HikingLady ... thanks for letting us know. I hope you feel better ASAP. I’ve been feeling breathless after each round as well and will make sure to keep a closer eye.
And for a little good news ... I just finished chemo today! What an intense journey this has been.Grateful to all of you for your help and encouragement.
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congrats lulabella on finishing chemo - it's a huge milestone!!!!!!
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Has anyone started radiation? I'm 2 weeks in and diligently applying the recommended cream and steroid cream etc. in hopes of minimizing skin probs. Just curious how others are doing?
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Yay, lulabella! Glad chemo is over for you.
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cc738nj, you might be kind of out front for this particular group, since many have longer chemo cycles -- if no one answers, maybe one of the forums for people starting chemo in an earlier month would have more insight? (But please do post here about how things go!)
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Had my last dose of chemo yesterday - yay. Thought this day would never come. Also had an ultrasound after my infusion was done and the primary tumour is undetectable by US. Axillary lymph node also shrunk but the tech didn't say by how much. But it's no longer palpable. Hasn't been palpable since after first dose of Taxol. This is very good news. Now we wait to see the pathology results after surgery to see if there's any residual cancer left. Oncologist said she is very pleased with my progress and this all good news and warned me not to get discouraged if there's still residual cancer in the pathology report, as it's rare for them to see a complete response. So I'm prepared. For now I'm happy that the chemo seems to have done it's job.
I think I am more nervous about surgery - having a right unilateral mastectomy. I live on my own. My sister might come and stay with me but she might not be able to get away. Her husband works in Oil and Gas and works in the field. Worried about doing it on my own but I have great friends around me to support me and check in on me. So I think its doable. At least I will have one working arm LOL.
Wanted to add, I don't know which was worse - A/C or Taxol. Both had different SEs. I was expecting/hoping taxol to be easier but I don't know. The fatigue was worse for me. Muscle, joiint pain, neuropathy and bad headaches - WTH! The worst part of A/C was the nausea and fatigue but they didn't last as long. So I don't know. Really, chemo sucks all around. Just my two cents.
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HockeyChick_CA49 What good news! Great response from neo-adjuvant chemo, yay!
I needed help for 24 hours after surgery. Someone to write down medication doses and manage them. After anesthesia, brain was foggy for at least the first night home. With a unilateral, you'll have one good arm and you can reach for stuff, so I bet you can manage on your own. I found it helpful to set alarms for meds, and write down a medication schedule of when and how much of what. If you need some opioid pain relief, you might also need some laxatives, so writing down the schedule of meds helped a lot. Just for a few days, and then everything turned around pain-wise.
I hope you're getting a reasonable time to recover a bit before surgery? On the other hand, we all just want to move through all of this, of course.
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Congrats on your last chemo, HockeyChick! 🎈🎈
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HockeyChick, Lulabella, congrats on finishing chemo! I am two weeks out myself. Getting ready for radiation.
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congrats to HockeyChick and everyone else finishing chemo. Thanks for the cheers
cc738nj and InnaB2018 there is an October 2018 radiation group, so we can head over there
I have the simulation scan on Oct.19 and then will probably start radiation a week after. My doctor was really positive and made it seem like it will be pretty easy with minimal side effects (????). Fingers crossed.
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oh and if anyone who has already finished up chemo before me, could you let me know when you start seeing your eyebrows grow in? i'm not very good at drawing them in lol
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EYEBROWS: At almost 4 weeks PFC, I have about 60% of usual eyebrows, and a few still drop out now and then, but little new ones are now sprouting. I am down to about 50% eyelashes but holding, and I don't see any new ones yet. I kept my hair pretty well with Cold Capping--a bit thin, but it passes for a head of hair.
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HikingLady are you feeling better?!
You must have strong hair follicles! I lost almost all of my eyebrows except for a few hairs. I also cold capped and kept everything on top but not much anywhere else. I can’t wait to start seeing some growth :
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lulabella Yes, my breathing is a bit better now. Day 4 of steroids, tapering off over next 4 days, and I'll have another chest x-ray in a week. Hoping it's just a "chemo reaction/lung tissue inflammation," which is the simplest explanation, and hoping it will get better and I can move on! Feels like I can fill up lungs better. Need to be better in exactly 1.5 weeks to get on a plane and fly to LA and visit our kids!
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I'm starting AC next Tuesday -- I did the Taxol first. I am worried, and I have questions! How soon do people have mouth problems, and does everyone get them? Tastebuds? How soon did you have to give up on digesting raw vegetables, or is that just some people as well? Tips and stories very welcome -- I don't see a separate AC group, but if there is one let me know...
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I feel bad I have been absent for a while and so many of us are now finished or close to being finished. A very belated congrats to you guys! It's encouraging to see so many of us cross that huge milestone. My last TC was August 10th and I finished radiation tx last Friday. I think now I'm finding that my biggest struggle is that I had hoped to have more energy at this point and some hair regrowth. I shaved my head when it started coming out in clumps because it just seemed easier to deal with going "all in" than having the micro trauma of watching it fall out slowly. I'm wondering if any of you have started hair regrowth? I have a few "sprouts" and some barely visible fuzzies coming up but mostly nothing noticeable. I'm still fighting quite a bit of peripheral nephropathy that interferes with my sleeping well so that's frustrating too. HikingLady, my RO suggested the same supplement regimen so I have been taking those since August. I think it's gotten a little bit better on them. I am also debating the benefit vs expensive pee delimma. Someone else on here mentioned that they don't remember what "normal" feels like. Isn't that the truth? Some days I feel like I'm running through sand just to maintain normal activity. I am being very vigilant about a nutritious diet and staying active even if that means 20 minutes. It's hard to stay positive some days. I see my Oncologist today for a follow up and I'm sure she's going to recommend Tamoxifen. I briefly browsed that forum and got freaked out so I'm not sure I'm ready to tackle those side effects. Dealing with everything post chemo/rad tx has pushed my positivity to the brink. I love the fall so I think I'm going to wander through the farmer's market today before my appointment and pick up some apples. That's how I cope, one small fun activity at a time.
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I've stopped reading the bottle o tamoxifen forum... way too freaky. I just started it and have decided to trust the struff There is another tamoxifen thread on here with many users who have zero SE's. I'm going on two weeks and besides manageable hot flashes I'm okay so far.
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rachelcarter35 --I had Tamoxifen when I was 45-50 y.o., and I did have hot flashes, but I'd already had some for a few years, so it didn't seem too different at that point. Hot flashes didn't seem impossible, just a bit irritating. I would almost say that it felt like zero SE's. I wish you comfort and smooth sailing through this.
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