Anyone on just Taxotere and Cytoxan?
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Just popping in to say congrats!! 🥳🥳🥳🥳
I am looking at you with starry eyes and 5 more sessions left! You looked great ringing that bell!!! ❤❤❤❤
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hi. Can we take biotin during the chemo or we can only take it after all round are done
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Nan - looking good. So happy for you being done.
IsMe - I don’t know if you can take during chemo. I didn’t take anything myself as I didn’t want to take any chances. I was told I could return to taking my supplements at the four-week mark after my last treatment. That is when I began taking the biotin. You might want to check with your oncologist.
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Nan, Your bell picture makes me happy. Looking forward to doing that tomorrow.
Sabrina, I do not have much energy. If you saw me doing these beginner workouts you would laugh. I go at about half the pace of the instructor. But I read that 30 minutes of excercise daily helps with chemo side effects. So I force myself to do something each day. Then I spend the rest of the day in a lounge chair. Ha ha!
XO
Suzy0 -
ya. 30 min of yoga or light body weight definitely help to reduce side effect. We should try to make it. Can try a simple hand swing workout as well. Stand with hand swing to shoulder height, every 5 swing pair with a light squat. https://www.youtube.com/watch?v=2iG7jXqL0m0 have a look. Can try it once a while alternate with your other workout
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HI All,
#4 and finally done! I was disappointed yesterday that my chemo center had no bell to ring. Instead I just took a picture for you of me in my chair. I pulled my mask down for a smile. Otherwise, between the cold cap and the mask you can't see my face at all. I did wear cold gloves and socks during Taxotere.
Today (day 2) I am feeling good this morning. Steroids have me energized a bit. So I will go get in a quick workout before I fade tonight. Last round, day 3 was the worst. Now every day of yucky will be one day closer to done.
Nan, I hope you are doing ok. You are right in the midst of the yuck I think.
Smichaels, hang in there. You are stronger than you think. Probably a lot stronger than me. You are half my age. I know having a little one to look after adds a lot of difficulty. I hope you have good support at home.
Sugar, how are those baby hairs doing? God, I can't wait to see that start.
KeepingCalm, when is your round 4 day? I apologize if you already said.
XO
Suzy0 -
Suzy - looking good. A big CONGRATULATIONS on finishing chemo!!!
Nan - how are you doing? Hope this last round is better than the previous ones. You are done...yay!!!!
My little silver sprouts continue on my scalp and I will begin Tamoxifen on Friday at the six-week post chemo mark. Not sure what to expect but hoping for the best.
Hoping everyone has mild or no side effects this week.
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A huge congratulations to you Suzy! You’re probably hunkered down recovering, hopefully in some good air conditioning, but your down days should be numbered at this point - really happy for you!
Hope you’re doing okay too, Nan! So great to see others crossing the finish line!
I’m scheduled for my final chemo this Thursday, 7/16, crossing my fingers and toes that I get better everyday from hitting my head when I fainted last weekend and am strong so that Thursday goes off without a hitch. I’m pretty sure I’ve got a mild concussion but my MO feels I may also just have cumulative side effects of chemo. Who knows but I’m sick of being sick!
Sherri, I’ll definitely be interested to hear how tamoxifen goes. I can’t remember if you said you’re post menopausal or not - if you are, I wonder how they decide which drug to start with. I hear about a lot of people starting with tamoxifen and then moving to an AI - must be some study that decides that!
Shauna, I think I saw you posted something about wigs in another thread. I haven’t worn mine much; I mostly where the baseball cap hair wig. But, I finally figured out how to wear my wig in a way that was at least passable. I hadn’t read the directions but when I did it said something about flipping the wig upside down and putting your head into it that way and then flipping it back up and low and behold it looked decent. Also, it will fit better once you shave your head (prob don’t do that to the scalp but rather a level 3 clipper - there are some YouTube videos about that). You may feel emotional in the moment of cutting your hair but I promise you will adjust. Of course it’s a little up and down - I do have moments where I hate looking sick even at home but this too shall pass! My MO just gave me a nice pep talk to that effect
and I’m planning to have a tune up with my center’s social worker this week too0 -
Keepingcalm, thank you for the kind words. I am kicking myself in the a$$ for not cold capping! But onward we go! Congrats on your soon to be last session - I am envious but very proud of you! Will you have radiation next?
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KeepingCalm - I am postmenopausal. I'll be starting Tamoxifen this weekend. I will be switched to Femara sometime in the future.
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Shauna, I go back and forth a little bit about the cold capping too which is of course ridiculous because that’s water way under the bridge at this point! However, I’m mostly okay with not doing it as it’s clear to me the results can be quite variable, at least for the chemo I’m on, and at least at the time, I felt like it was one too many things for me to manage with not being able to have someone come with me to my infusions. Also, my MO is super data driven and pretty strict and she would have certainly supported me doing it but said she had some concern about not yet having long term safety data. (I think they may have that in Europe?). She said while extremely rare there have been some instances of later scalp metastasis. That scared me probably more than it should have. All to say, while I definitely see the appeal and wonder if I did the right thing, I think you can also feel like you made a reasonable decision not to. Have you seen this woman’s blogpost about her hair regrowth? I’ve found it really helpful and supportive in terms of looking forward and getting an idea of what to expect.
https://www.mycancerchic.com/style-beauty/hair/hair-timeline/
As for my last treatment, fingers crossed it will move forward as scheduled this Thursday. And fortunately, because I had a BMX and no node involvement, I won’t need radiation.Sherri, I’ll be interested to learn how you find the tamoxifen. Not sure yet what the plan for me will be - some question about tamoxifen or OS/AI. We’ll see
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Keepingcalm, I also read about the scalp metastasis which freaked me out! I could never forgive myself if I let vanity be the reason my cancer spread. I am coming to peace with the fact that I will lose my hair. Its traumatic for sure, but nothing about cancer is glamorous anyway. Its funny you linked that blog - I LIVED on her blog when I first received my diagnosis and love her! I plan to get extensions as soon as my new hair is long enough, lol.
Congrats on no lymph node involvement! I am hoping I am that lucky, too! I want direct to implant after the DMX but I'm not sure that will be possible if they test my lymph nodes and they are positive. I wonder if they do that right there during surgery and make a decision? Like I go in hoping for direct to implant but might end up with expanders if they decide I need radiation? I haven't met with the plastic surgeon yet so I'm working on my list of questions.
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-smichaels11-
I had two positive sentinal nodes so my surgeon did axillary node dissection. They removed 15 nodes and only one other was positive. So 3/15 and they still did direct to implant with nipple sparing. As of now they think I should have radiation but I am trying to decide with the long term SE if that’s something I really want to do. Best of luck and hopefully you have no lymph node involvement.
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Shauna, my understanding of how things went for me is that at MRI prior to my surgery no suspicious nodes were found. Then at planned BMX the surgeon did whatever the technique is for identifying and removing the sentinel nodes for testing. I believe they are able to do an initial pathology during the surgery and thankfully of the 3 nodes (2 on cancer side, 1 on other side) they removed none were positive. The final pathology confirmed that. I had BMX with direct to implant reconstruction, not nipple sparing bc it was questionable how close the issues were to the nipple and I just didn’t want to have to ultimately worry about that or have another surgery if pathology revealed something different. And after all that I went home the same day. Crazy! The cosmetic result of quite good. When will you have your surgery?
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Thank you for the info! I had an MRI, which indicated a questionable lymph node. When they sent me for a biopsy they couldn't find any issues with an ultrasound and ultimately did not do a biopsy. The bone scan and CT were both clear as well.
I am currently undergoing chemo for 6 rounds, which will take me into October. They said they usually wait about 4 weeks after chemo for surgery, so although nothing as been scheduled yet I would assume it will be sometime in late November or early December.
Ideally I would like BMX with direct to implant but I haven't made a decision whether or not to go for nipple sparing if it's an option for me. Is there a risk associated with keeping nipples? I want to eliminate any and every risk factor I can.
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Hi Shauna,
Happy to answer any questions about surgery that might be helpful or relevant to your situation. I don’t know how establishing lymph node involvement or not works if you’ve have chemo first and a biopsy didn’t confirm or disconfirm (is that a word?!) lymph node spread. Great news on your bone and CT scans though; that’s definitely encouraging!
I did not do nipple sparing because in my case MRI showed extensive DCIS very close to the nipple such that it was hard to tell without another biopsy whether or not there was nipple involvement. At that point I was fed up with biopsies and was already headed in the direction of BMX that I just said forget it, take the nipples so that I wouldn’t potentially need another surgery to remove them if cancerous. Also, my PS said if I kept them, I’d need another surgery to realign them 🤷🏼♀️ as post 3 pregnancies they would not be in the ideal cosmetic position after the mastectomy surgery! So taking into account all of those factors individual to me, I just decided they weren’t that important to me if I wouldn’t have feeling in them anyway. And as it turns out at final pathology there was not nipple involvement but I have no regrets. Such a personal decision though!
In terms of your question about recurrence it appears if you’re a good candidate you can do nipple sparing with confidence so lots of choices to consider
https://www.breastcancer.org/research-news/consider-cx-characteristics-for-nipple-sparing-mx0 -
Hi Everyone,
Cycle 3 was delayed to today. I guess I'm not getting through a cycle withou A major side effect. 😜.Reason for the delay. Manageable side effects in cycle 2 changed drastically during week 3, which should have been the easiest week. I developed a scalp infection and was prescribed an oral antibiotic which I finished on Friday and the scalp improved. I went in for the PICC maintenance last Wednesday on schedule, and showed a slight fever 100.3, I had a mild cough and some shortness of breath, so I got sent to the ER for a Covid test, thankfully it was negative and the PICC got maintained and I went home. On Friday evening I felt chills, so checked my temperature, it was back up, 101, checked again a short time latter it was up to 102. Called the Drs office and of course they sent me back to the ER, Covid again negative, but the fever was now up to 103,and I had just been there a couple of days before, so I was admitted. Spent the weekend in the hospital, running the fevers , they ran all the test you can imagine trying to figure this out. My pulse was running high, and my blood pressure was running very very low. I could tell they were concerned, but I actually didn't feel that bad, I had an appetite, wasn't really lethargic, just really tired. They tried antibiotics, Tylenol , and finally an Ice blanket and Ice Packs, that worked best to bring the fever down. Boy was it cold....No infection found, in the end they finally figured out It was a severe allergic reaction to the Antibiotic I had finished for the scalp infection!!! I now know, and have to record I have an allergy to that type of antibiotic. I've never had a drug allergy, I looked up that drug and it doesn't even list Fever as an adverse Side effect. So Weird. Well anyway , "all's well that ends well" . Fever broke yesterday and I got to go home, Treatment is only delayed a couple of days , (I know that seems quick given this weekend, but timing impacts chemo's effectiveness, so I am happy I can continue pretty much on schedule) . Maybe this will be the lucky cycle 3 with no crazy side effect. All prayers up and fingers crossed. I will keep you posted as best I can.
Love you all for sharing so honestly and candidly. This is a caring and informative community. I'm sorry we are facing this challenge, but glad we are not alone.
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HI All,
Just catching up on all your adventures since last my last post.
CDR_Westchester, I am sorry you had to go through that scare and delays because of side effects and allergic reaction. What a roller coaster! Glad it did not push you too far off schedule.
KeepingCalm, I think today is your round 4 (Final round!). Good luck today. In 2 or 3 a weeks I think is when the real joy will come. When you start feeling like your old self again and you DO NOT have to go ruin that feeling with another round of chemo. Hooray!
Round 4 for me was, as expected, a little worse. Days 4 & 5 were the worse. But each day since have been each a little better. I look back on my journal from previous rounds and see I am more fatigued. But it is tolerable. I am on day 8 now and finally have more energy in the morning. I have an appetite, but most food taste weird. My mouth and throat are a bit weird so I gargle with salt & baking soda 3 times a day, my ears ring, I have had some nose bleeds, and my head is still cloudy. But over all much improved. I am making a list of a thousand follow up questions for my Oncologist now that I am done. I will be starting 4 weeks of radiation in a month. Then after that I believe I will be taking Arimidex. I am hoping after chemo, the rest will be a breeze.
I hope you all have a strong week.
XO
Suzy0 -
CDR - so sorry for all you have been through - wow! I haven't had it that bad but similarly have had some issue or another at every cycle it seems. Hope you continue to feel better!
Suzy, how kind of you to remember today was in fact my last cycle! I am feeling relieved for sure! And the icing on the cake is that they pulled my picc line (port was removed several weeks ago after an infection). So for the next 24 hours I've got the Neulasta onpro on one arm and a big bandage over the picc line insertion on the other but then I will be home free of these devices (minus the breast implants 🤷🏼♀️). Hope you are beginning to feel well! It's been nice to be able to do this along side of someone else even if virtually!
Nan, not sure if you're still reading but thinking of you and hope recovering from your final cycle continues to go well
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Hi everyone,
Thought I'd keep this thread going ... like Nan, I am now recovering from my final cycle! My MO did say on the last day “now remember this is not your last day of chemo". For a moment I was in a panic thinking what?! But she clarified which for some might have seemed like a downer but she's right, to remember I'd probably have a few bumpy days ahead of getting through the SEs. And sure enough Day 3, I'm feeling it and that pesky Neulasta Onpro - hate that thing! (Which I'm realizing I complained about in my previous post too - a bit of chemo brain?!) As incredibly achy as I feel at the moment, now having the onpro off and being rid of the PICC line/bandage and the port is freeing! We’re getting there! I’ve got a bunch of appts ahead - follow up with the PS to check in on mastectomy recovery and follow up with MO to discuss next steps in terms of hormone treatment.
I hope you're all doing okay.
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Hi All,
KeepingCalm, so glad you are finished. I understand what your MO was saying to you. Not time to celebrate yet. First lets get through these crappy days. I am on day 11 and still having a semi-rough time. It is really lasting long this time. I am drinking Senna tea as I type to try and get my insides moving. I feel much better than I did that first week. Especially days 4 & 5 which I think were the worst this round. Now it is just continued fatigue, bloody noses, cloudy brain, sour stomach and in the evenings I get achey.
I actually found it kind of interesting the way everyone was calling or texting me on my final round day and saying, "Yay, your done! Celebrate!" Because I knew what lay ahead and was in no mood to celebrate. I know they meant well.
Next up for me will be radiation starting mid August. I am looking forward to some normal weeks at the beginning of August. Then I don't expect radiation SEs to be a big deal after chemo.
When I went in this past Friday for my follow up blood work, the nurse set me up with intravenious set up for chemo after taking blood. Just about gave me a heart attack. I told her NO, I am done! She laughed and said my order must have been copied and pasted in from last visit. Yikes!
Hope everyone is getting through it as best you can. Virtual hugs to all.
XO
Suzy0 -
So great to hear your update Suzy. I’m on day 5 and usually begin to feel better around now but like you I think I’m expecting this all may last a little longer. I had some chills late in the day yesterday and sure enough my temp was 101. I called the on call doctor, and he felt that because I’m young (39) and didn’t have any other symptoms there was a good chance the elevated temp was due to the effects of Neulasta even though not necessarily listed on Dr. Google as a side effect for the general population. I was relieved not to have to go to the ER and sure enough this morning it’s down to 99.5 so trending in the right direction!
Chemo has been manageable as my doctor promised at the outset but certainly not easy or fun, especially when last night amidst this elevated temp my 6yo threw a total tantrum over bedtime, probably because we hadn’t woken her up early enough that morning. And yet I feel badly complaining and a little unsettled feeling this way because I realize other treatment protocols others are doing might he even more taxing?
I can’t believe your story about the nurse getting you ready for an infusion you were not scheduled for, Suzy. It’s so crazy how you really do have to be your own advocate especially right now with Covid and not being able to have someone else with you. Glad you nipped that in the bud
Hope everyone’s doing okay!
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Hi All,
Just checking in to send my love and healing thoughts. I hope you are all doing well as can be expected.
I am now Round 4 (final round), Day 16. The fatigue and weakness has been very strong and has lasted a long time. Yesterday and today I am finally feeling a bit of energy come back. Lots of crazy emotions this round too. I feel like my body has been thrown out of balance not only physically, but emotionally. But, like everything else, that is slowly starting to lighten too. I am trying to be patient with the slow pace of it this time.
KeepingCalm, I hope you are doing OK. Since you are a week behind me I imagine you are in the thick of it still.
XO
Suzy0 -
Suzy - sounds like you are through the worst of it. Lots of emotions for sure once completing but here's to moving on and figuring out your new normal. Believe me, life goes on and before you know it, you'll be out of the thick of things that come with a diagnosis like we've received.
KeepingCalm, let us know how you're doing!
I'm feeling really good. I started Tamoxifen a week ago yesterday and so far it's been no problem at all. Hope all is well with everyone.
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Starting four rounds of TC on Thursday. Pretty scared. I wish I knew in advance what to expect. I have read all the threads, but know everybody is different. I also have a 13 year old who will be home virtually alone while I’m there, because with covid, nobody can come hang out with her. I know she is old enough to be safe, but also will be lonely and scared for me. I’m also worried about how functional I’m going to be for her for the next 12 weeks. Still haven’t fully recovered from the BMI and ALND, and I’m tired. Emotionally and physically.
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Hi KMom57! Sorry that you are facing this drama and I remember how terrifying it was before I started my 4 rounds of TC. Of course, everyone's reactions/experiences/side effects are different, but the actual infusions themselves are time-consuming but painless. On a typical infusion day, I arrive at the suite and start out with labs to determine whether or not I can safely get my chemo that day. After 45 minutes or an hour, the results come back and they start administering the pre-meds, then the chemo. The nurse gives me a heads up so that I can begin icing my hands and feet about 15 minutes before the Taxotere starts. The whole process takes about 6 hours for me, plus travel time. It is actually very calm and quiet in the infusion suite and pretty relaxing, which is good because I never sleep the night before
. I'm up all night with the steroids and the stress! I usually sleep well on infusion day. It's the days that follow the Neulasta injection that are physically the roughest (days 4-7 for me are terrible), but in general life gets back to normal after that and it shouldn't interfere too much with your daily routine or your ability to care for your daughter. I tend to order in dinner for the rough days and let myself relax when my body tells me to. Just make sure that you have things you might need on hand (meds, nausea friendly foods, plenty of liquids, etc.) so that you don't have to go out if you aren't feeling great. Does your daughter have a FB account? I realize she is quite young still, but perhaps you can face -time with her during your infusion on FB or the Messenger app? I do that with my husband and 17 year old daughter to kill time and boredom during mine
. I know it feels overwhelming, but it goes by fairly quickly and you can do this! Stay positive and reach out when you are feeling down. The ladies in these threads are a pretty amazing source of support and they have all been there, so they can relate and build you back up
. Sending you good vibes and warm hugs! Cheers,
Sabrina
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Hi Sugar, Nice to hear from you. Good to hear the Tamoxifen is going smoothly. I will be taking Arimidex. I hope I have the same results. I asked her why that drug, and she said it is the cheapest. Hmph! She also said if I have any side effects we can change to one of the others. First though, I do 4 weeks of radiation. That starts mid August.
Hi Sabrina!
Hi KMom57. I feel for you being at the beginning of this journey. Even though chemo was unpleasant, I found that my stress and worry before round one was out of proportion. Then round 2 felt a bit easier because I didn't have all that anxiety any longer once I knew what to expect. Like Sabrina said, days 4-7 are probably the hardest and you should plan on resting and not doing much those days. Infusion day is not bad. It usually doesn't hit you until day 3. I tried to keep meals to things I could just heat up for the first 9 days. Or, I would just order out. If people offer to help, or ask if you need anything, take them up on it. Friends and neighbors have been so helpful to me by dropping off a meal here and there, or picking up something I need at the store.
The video chat idea is a good one too. I did do that with my daughter on infusion days. Maybe you two can start planning all the good movies you will be watching together.Sending you virtual hugs!
XO
Suzy0 -
Hi KC and Suzee and Sherri and everyone -
I've been off the thread for a long time, ever since my last chemo three weeks ago. Today would have been a treatment day if I hadn't finished up last time. And thank goodness I did. This has been the hardest round, and I'm still trying to recover from it. I had a fever for two weeks, and made a couple of trips to the ER for blood tests and other fun stuff (the covid tests were pretty awful! But thankfully negative). I spent most of the last three weeks on the couch power watching 8 seasons of Game of Thrones. I recommend power watching something you like (one friend watched Downton Abbey). It's diverting and keeps you glued to the couch so you can rest and not spend all of your time sleeping.
This past week, I've been so tired, I could hardly walk from one room to the next. I was getting pretty worried about that. I mean - it's been 3 weeks! What the heck! So back to the ER yesterday for more blood work. I'm somewhat anemic, although this has been the case for the last month or so, so not sure why all of sudden it's an issue. But the doctor in the ER prescribed iron pills so I'm taking them. Today, I walked to the end of the street and back with the dog (and my neighbor who threw her back out). We hobbled along, resting frequently in the 95 degree heat (ugh) at 7:30 in the morning. I came home and resumed my place on the couch. But I did it. And I'm going to do it again tomorrow and every day until I build up some stamina. I don't think this happens to everyone on the fourth round - but if it happens to any of you, get a blood test for anemia. The weakness is miserable.
Aside from that, though, I'm excited to be done. Today it really hit me that yes, I don't have to do that again (hopefully ever). And as I get better, I can stay that way. I have an oncologist appointment on the 2nd where we'll discuss what is next. I'm hoping he'll give me a couple more weeks to feel better before we start on the hormone therapy. Mainly, because I'd like to find out what my new normal is before things get wonked up again. Oh yeah, and I really need to lose the 10 pounds I've gained by laying on the couch for 3 weeks eating carbs.
Haven't started getting new hair yet. I think I'm still in losing it mode. But mostly it feels like peach fuzz. And I'm afraid I might lose most of my fingernails at some point soon. They are turning a funny color and the nail beds hurt a lot so I can't pick things up or open soup cans. Hasn't stopped me from knitting though. No problems with toe nails. Those cold pack socks really helped there. The balls of my feet and my toes are pretty numb though. Anyone else having issues with neuropathy? Or fingernails?
I asked the oncologist about the recovery process after the last treatment, and he was pretty definite that it would take at least four weeks or more to get out of the weeds completely. Now starting week four. Fingers crossed that by next week, I'll be walking that street with a little bit of gusto. I think my dog would be very happy. She thinks I'm really lame right now ☺️
Be well and stay strong!
Xo
Nan
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Suzee and Sabbymama. Just wanted to say thanks so much for your encouragement. I did the first infusion today, and you were right. It was not as bad as it was in my mind. I had a great nurse and great assistant nurse though, so that helped. The cold capping was a bit uncomfortable but was not so bad as to be unmanageable. And my daughter did fine. We chatted a bunch, all day, and my sister Kept her occupied texting about things young teens love to talk about. So we managed. Now, tonight, I feel not bad and took advantage of that to get the kitchen cleaned and go for a walk. I do feel upset stomach already, which is disheartening. Seems quick. Also a bit of tingling in my feet. I used cold packs but I think I did not have enough and they got too warm too fast. There was also a delay in starting so they had started to warm. Is the neuropathy damage that fast? That I would feel it already? Worried about the days coming up in general but I guess there’s no way out but through. And I’m 25 percent through (sounds better than 1 out of 4). Thanks again
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Hi KMom,
I'm glad you and your daughter made it through the infusion day well
. I am sure you are now feeling the effects of the TC/Neulasta and taking it easy. I hope it is not too rough for you! Rest as much as you need to, let your daughter pamper you, and try to stay in good spirits . You got this! 4 rounds does seem to go very quickly .Regarding the neuropathy, I'm not sure how quickly it can occur, but personally it wasn't a problem for me until after my second dose and I also iced my hands and feet. I purchased "slipper socks" by NatraCare for my feet (2 sets which I change halfway through) and a small 12 can cooler bag that I fill with various ice packs/blocks and a bag of ice chips to chew on. For my hands, I just keep them in that cooler bag for the whole Taxotere infusion plus 15 minutes before and 15 minutes after. I would love to tell you that it worked, but sadly I can't...lol. My neuropathy after round 4 has been significant, but only in my left arm, which is the is side of my mastectomy/22 lymph nodes removed so maybe that is a factor too? Definitely mention your concerns to your oncologist and see if they have any advice. Best wishes for a speedy recovery!
Cheers,
Sabrina
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