Starting Chemo May 2020
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Thank you Paula for your sweet words! I am praying I am one of those lucky ones who keeps their hair no matter how unlikely it may be. It was interesting, I noticed at the infusion center that the men all had hair but the women did not. So strange!
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Shauna, I'm sure it's a change, but your short haircut looks great! I went direct from shoulder length to buzz but when it was clear my hair was on its way out but I'm on a different chemo regimen where hair very predictably falls out 14-17days later.
Angela, you also look great! Is your hat also from Dear Martha or somewhere else? Did you style the hair yourself?
Paula and Judy, sounds like you’re getting there in terms of getting beyond the midway point in treatment. Hope you’re doing well!And Sabrina, hope you’re doing better this week. Are you expecting you’ll be able to move home within the next few months?
I’m doing fine. With a little luck, my final chemo is scheduled for July 16th.
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Hi KeepingCalm, I didn’t have to style that one! It came to me that way. It’s the New! “curly wig with black hat” https://www.tlcdirect.org/Hats-with-Hair-for-Cancer-and-Chemotherapy-Patients-Hair-for-Hats-American-Cancer-Society-TLC-Direct?shw=1 TLC has an excellent return policy and amazing customer service.
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Hi All,
I am on day 5 (if chemo day counts as 1) and I am still so exhausted! The back of my throat burns a bit so eating and drinking is annoying. I tried some decaf coffee which I normally love but had to pour it out. Im just thankful to be off the daily rotation of pills today! Obviously were in the thick of summer and I just want to be outside and enjoy the hot weather! Sorry, just a bit frustrated at my limitations at the moment. Is there anything you did in particular to boost energy? Can I expect to be feeling better soon? The nurse said days 3-5 were the worst.
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Hi Shauna,
For me days 3-8 are the roughest (particularly 4-7) and I do sometimes just feel exhausted for no apparent reason, even outside of those days. I realize it is frustrating to not be able to enjoy your summer, especially when you have a little one at home, and I sympathize. But, there are good days too
. Maybe try some protein shakes for an extra boost? Gatorade to keep hydrated? I did not experience the burning sensation in the throat, but I have heard that gargling with some baking soda/water might help. I bought some Orajel mouth rinse and Biotene Dry Mouth rinse to have on hand just in case, and I have used both on occasion. My mouth/nose/eyes get really dry from the Cytoxan and this last round I had a couple of mouth sores. My sense of taste has diminished dramatically and Diet Coke no longer tastes good to me, which is sad, but maybe a mixed blessing...lol. I hope that you find some relief and some energy in the next couple of days! Hugs 
. Cheers,
Sabrina
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Today was my first day really having to focus at work (I am working from home right now) and I only made it to noon. I couldn't focus on anything and nothing felt important. I HAVE CANCER was screaming internally as my peers and reports were droning on about things that just didnt feel important.
I will try again tomorrow, but it feels insurmountable. How do you care about.... anything.... after something like this? How do you move on? I feel like my days are numbered and I fell down a YouTube rabbit hole of young moms with breast cancer saying goodbye to their children. Ahhh why did I do this to myself?
Sorry, I am definitely having a day
I actually found some solace in reading the stories of Hoda Kotb, Robin Roberts, and Christina Applegate.
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I'm so sorry Shauna. Young or old, we have all been there and it is all to easy to fall down that proverbial "rabbit hole"! Breast cancer sucks and it is not fair that any of us have to deal with it. There have been and continue to be so many advances in the treatment and women are living much longer lives, so I try to stay positive.
I try really hard not to think about the future and just take things one day at a time, one step at a time. Also a friend of mine had a really great idea to write down at least one thing that brings me joy everyday, so I started an online journal on Penzu that I use to vent my feelings/frustrations, to memorialize my experiences with treatment, and to capture that one thing that makes me happy everyday such as my kids playing games together during our Face Time sessions, a song I love coming on the radio, inspirational memes, etc. I find it helps me to go back and read the posts, both good and bad, because I can see what I have overcome and it helps me feel strong moving forward
. Hang in there! You got this. Hugs to you!Cheers,
Sabrina
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Shauna, I can very much relate to some of the thoughts and feelings you described and how scary this can all be. I can say that I am finding it gets better with time. Those thoughts aren’t gone but I do find that as time goes on and I proceed through my treatment I adjust. I’ve also met with my center’s social worker a few times to talk and have found that very helpful. Still, I catch myself feeling “jealous” of others leading happy hour lucky lives and have to remind myself that lots of people have struggles, many times that you’d never guess from appearances. And Sabrina, you’re right that being mindful of things I can be grateful for and just more present to positive moments is something I’m learning and I would admit those aspects are surely making me a better person and parent! (Not that we’re required to learn something from a bad luck situation)
Speaking of bad luck! I was doing great this chemo round until I fainted in the shower after a 3 mile beach walk (which I felt good for and enjoyed but apparently was over doing). I have no recollection of feeling faint and got pretty bashed up - needed a laceration near my eye stitched in an unfamiliar ER because we were a few hours away from home and then they were concerned about a possible blood clot so did a bunch of scans (which I would have rather not had but oh well) and then observed me overnight! The good news is all came back normal and they suspect I was dehydrated. Scary though! And now I feel super fatigued which is getting me a bit down. I’m inching closer to my last chemo though which is a plus.
Thinking of everyone
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Hi all-
I’m on day 10 after round 3 and I’m starting to get excited about my 4th and final round approaching on July 20th! Though getting close to finishing one treatment has me thinking a lot about the next, which for me will me 6 weeks of radiation. I started reading some of the message boards on radiation and all the short and long term SE are starting to really have me wondering if I want to go through with radiation. I had a DMX with direct to implant, eventually I will need a revision or they will at the least need to exchange the implants. I just hear how they don’t like to operate on radiated skin.... and when they do so many things can go wrong.... I guess I need to talk to my RO and MO. Wishing I had a crystal ball. Is anyone else starting radiation soon???
keeping calm- I’m so glad to hear you are okay!
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keepingcalm, oh my goodness I am glad you are okay! I hope you will still able to enjoy your beach days!
Thank you for the kind words! I work myself into fits that I'm going to die and have to talk myself out of it by reminding myself that I am curable and must need to get through this temporary nonsense so I can move on and grow into old age!
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Hi Christie, Just had round 3 of TC yesterday and I am also starting to read up on the radiation treatment too. I need to talk to my MO about how much she has in mind. During our last televisit (a month ago!) she didn't want to discuss it in detail as she wanted me to focus on getting through the chemo with less to stress about. In much of my readings, it seems that often ROs want the area to be flat, so wondering how that effects things with a TE in place? Also, what area are they going to target? The breast tissue or the lymph node removal? I see you also had several positive nodes, like me, and I imagine that they would want to focus on that region too? I have so many questions and concerns and to further complicate things, I am hoping to return to Belgium to do the treatment there. Does this nightmare ever end?? Best of luck with your last round on the 20th! I'll be soon after on the 28th
. Hugs!Cheers,
Sabrina
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Hello Everyone, finished round 9 of 12 yesterday. Feeling ok - still on steroid high. Number 8 kicked my you know what.
Shauna - I am sorry you are feeling down. It is very scary. I had the same emotions and still do, but it's definitely gotten a better. I think we all have good days and bad days. I did the same thing with reading the stories on the internet. I was addicted, but a friend told me to stop reading the stories and focus on the positive things. When I wanted to jump on the internet, I had to force myself to put it down and focus so I started doing little positive things like sitting in the sun for 15 minutes or walking around the block - anything to not google. The internet really put me in a depressive state of mind and you really never know what's real as someone once pointed out. It was hard to break for me, but once I did my mindset became much better. Are your treatments once a week? I am doing 12 treatments once a week and the first week was brutal.
KeepingCalm - I am so glad you are ok. That must have been really scary. I am glad the scans came back normal. I hope your eye doesn't look too bad and it's not painful.
Have a great weekend everyone. Will be thinking of you as we power through!
Paula
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Day 6 out from infusion #3 and starting to maybe feel better? Still very dizzy and feeling the ever lingering headache that never wants to go away.
I have a quick question for you ladies. How frequently do you meet with/talk to your oncologist? It's been over a month for me, and I am feeling a bit frustrated. I emailed her some questions last week and asked for a chance to chat, either virtually or in person. It boggles my mind that no one has checked in on me since a week after my first round. Is that your norm? I see doctors come to the infusion suite and talk to other patients and always wonder if my MO will do that too, but it has not happened.
Congrats Suzy on your last infusion!
Paula--- I hope the 9th round is being kinder to you!
Sending my best to you all!
Cheers,
Sabrina
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Sabrina, I hope you begin to feel better soon! In terms of your question about your MO, like you I think, my chemo is once every 3 weeks. I have an appt with her the morning of each of the chemo sessions where she goes over my bloodwork and we talk about how I’m doing and then sends me off to the infusion. I haven’t seen any doctors checking up on patients in the infusions, although it has occurred to me that that would be nice! My MO’s nurse is very responsive over email and it seems she will always email back the same day (and is the best way to get an answer from the doctor herself outside of an appt). However, fortunately my doctor has been very open to scheduling an extra appt if I need one, although she seems to only offer appts 2 days a week. I hope you can get in with your doctor. I can imagine you feel adrift if she hasn’t been in touch. It’s also a bit funny because I feel like when I see my doctor I’m at my relative best - mostly recovered and on steroids! But then after the fact when we’re in the thick of it, we’re not in touch. I feel like it would be nice if they had a nurse call you a few days into each treatment to check in.
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Hi, just checking in and responding where I can remember.
I had my first cycle of AC on Friday and wow, what a difference from the Taxol. I was given Zofran w/steroids and another anti-nausea med (can't remember) with my infusion. I felt light-headed right away (before the AC) and then got extremely nauseated at the end. They gave me Ativan (off label anti-nausea) but it didn't help much. I got home and went right to bed without dinner. Called nursing triage and they told me I could take Compazine and then Zofran later if it still feeling bad. Woke up yesterday and ate some dry toast, slowly felt better the rest of the day but never completely well. Same today, ate breakfast but felt yucky so went back to bed. At least I didn't actually vomit. Ugh I hope this goes away soon!
Sabrina I also see my MO before every infusion and am encouraged to email and call nursing triage as often as I want. They are generally very responsive. If I call triage they always follow up to make sure I'm doing better.
Christie (and Sabrina) I met with the RO last Monday and she answered all of my questions. My last chemo is 8/21 so radiation would start mid-September. I don't have an implant or TE but she did say no surgeries until a minimum of 9 months post radiation. I'm planning on doing my left side but haven't decided on reconstruction yet. I had 2 positive nodes and they will be doing my chest wall up to my collar bone to just past the mid point (into my left breast) to my underarm. I will have 28 treatments and 2 boosts. I had a bit of a freak out about it on Thursday night before my infusion, but I talked to my MO and she said we could talk about it more after my chemo. She said chemo is way scarier and worse for the body than radiation, even for long term side effects. I feel better but still may look into skipping it.
Hang in there ladies!
Angela
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Thanks Angela and KC for your input. I actually got a response from my MO last night and she apologized for not having been in contact, saying she can't understand how that happened....lol. Anyway, we will meet next week to chat about my treatment thus far and moving forward.
Angela-- I hope that you are feeling better now and that this won't be the norm on your new routine! How many rounds of AC will you have again? The radiation stuff is very scary and I am quite nervous about it too. My skin is already so ridiculously sensitive and I'm pretty sure that it is going to be very bad for me
. Today I am feeling physically much better, but very down in the dumps. The news about Kelly Preston's passing was rough for me. Learning that she passed after a 2 year battle makes me worry that I am wasting critical time. Being separated from my family for the last four months with no idea when I'll return feels like an eternity when put in the context of her battle. If that wasn't enough, I learned that one of my former colleagues also passed away from BC last month. She was 51 years old and a beloved mother, teacher, and all around amazing woman. I am just feeling like life is way too short and I really want to go home and be with my husband and younger kids. It feels like I am robbing them and myself of very valuable time together. This is so hard. Staying out of the "dark place" inside my mind is getting very challenging and I think I may reach out to the social worker or a therapist this week. Trying to just keep things in perspective! Thinking of all of you, many of whom are so much younger than me with young children and so many responsibilities, reminds me that I am lucky in many ways and that this journey could be much harder, but sometimes I just need a good cry! Today is one of those times. Hugs and love to you all!
Cheers,
Sabrina
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Angela, hope you feel better soon! Interesting comment about chemo vs radiation, but I suppose that stands to reason. I hate the idea of chemo but obviously we’ve all had our treatment plans laid out by data that suggests the benefits should out weigh the risks - Oy!
Sabrina, I’m so sorry you’re struggling with the emotional side of all of this at the moment. Know that you are absolutely not alone and the fact that you are overseas for treatment amidst this whole Covid issue would otherwise have been unfathomable and yet you are living it. I have utilized my center’s social worker several times and found it incredibly helpful. My MO also just gave me a pep talk along the lines of everything you wrote about and gave me an additional local therapist resource who sounds wonderful and I’d be happy to share since we’re in the same city if you ever want an additional contact. I keep reminding myself that for every negative outcome you might hear about there are many women who have had positive outcomes and then of course as they say, don’t borrow trouble - easier said than done. And as you said, don’t underestimate the benefit of a good cry every once in a while. I did the same this week a few times
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Hi everyone,
Just reporting some light at the end of the chemo tunnel. I had my final infusion today and am feeling a certain sense of relief but also like Sabrina know there’s the recovery time so am intent on taking it easy as much as possible to avoid any unnecessary speed bumps this round.Sabrina, I’ve been thinking of you and do hope things are improving for you all around. It’s hard to cope when you’re feel physically crappy too.
Paula, how are you doing? I guess those of us in the DC area can brace ourselves for a hot weekend perfect for recuperating on the couch in some strong air conditioning!
Thanks for all of the support along the way in this ladies. It’s been so helpful to me
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Yay! Congratulations on your final infusion Keeping Calm! I hope this week isn't too terrible with the side effects and that you get plenty of rest in the nice air conditioning
. Thinking of you . Cheers,
Sabrina
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Congratulations KeepingCalm! I hope you got to ring the bell at your last infusion. I saw it for the first time on Friday and I almost teared up in anticipation of my last one. I have 3 more AC infusions and will be done on 8/21.
I’m feeling a little better every day, with today being my best day so far. I get my 2.5 year old grandson overnight tonight so I’m super stoked about that. He brings so much joy into our house!
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Well, up in the middle of the night due to steroids mostly and some night sweats but par for the course for chemo for me.
Angela, your grandson is adorable! Enjoy your time with him! My youngest is 3 so I know that stage well. I’m sure he will provide your lots of entertainment and distraction and you’ll probably need a nap when he goes home - ha
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Just a hello from NC to all of you amazing women. It's rotten, but we are doing it. Tuesday was Taxol 10 of 12, so "only" two more to go. It's really feeling very, very, very long and I'm beyond ready to be done. Of course, I have to go back in week 13 for a dose of Herceptin, which feels terribly unfair... And an echocardiogram at the end of the month to make sure my heart is holding up ok. And a consult and simulation with the radiation oncologist on Aug. 4. It's never going to end, is it? I keep thinking what friends who have gone through this before keep telling me: You just have to show up.
KeepingCalm: Congratulations to you. What a huge milestone!
Sabbymama: Roller coaster doesn't begin to cover it. It's just hard and I hope you have found a way to have some light in your life this week.
Angela: That face! So sweet. Thank you for the boost.
All: Best wishes to you for as safe and restful a weekend as you can muster. Onward.
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KeepingCalm - CONGRATULATIONS!! That is fantastic. You did it!! Yes, the DC area is going to be a hot one this weekend. I love the summer and the heat. The first to graduate our group???
Sabrina - Thinking of you. I hope you're feeling better.
Angela - What a gorgeous baby boy. I love that picture. I am glad you are feeling better.
Judy - You are almost there!! had number 10 of 12 this week too. I will be on the Herceptin infusion schedule too, but not sure when I will receive my first without chemo. I do know I will have the echocardiogram shortly after the chemo/herceptin combo. I'll just show up too when they tell me. You will get through all of this treatment!! We all will. Just like my doc told me in the beginning, "this year will suck, it's just a bump in the road, but you will get through it and it will be in your rearview".
I understand that some groups like our group graduate to a Facebook page once everyone is finished chemo so we can stay in touch. Not sure if anyone may be interested in staying in touch after treatment. It's a thought. Not only have you helped me get through this with your support, but we are all going through this during a worldwide pandemic. We are a special group and I am so thankful for you.
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Thinking of you Judy. Glad you checked in! I can totally relate to the “just show up” piece and in fact in an emotional moment with my MO a few weeks ago she encouraged me saying I was doing really well just by showing up and said she’s had to chase after a number of other patients to comply with the treatment plan! All to say, even if you’re dragging yourself kicking and screaming, you’re doing it and it will come to an end!
Paula, i guess I may be the first “graduate” although if it’s any consolation I am definitely feeling the effects today! Neulasta again - the combo of chemo and that thing just seems awful! At least I now know this too shall pass!
The Facebook idea is a really nice one. I’ve actually connected with some of the April chemo women through their private FB group since I was right onthe cusp of April and May. I’ve found it to be really supportive and would enjoy having a group for our May group too if anyone else is interested. Only hitch is I have no idea how to start one! If you know how to set it up Paula, I’d be happy to join 😀
Hope everyone else is continuing to hang in there!
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Well I got to ring the bell yesterday after my last chemo infusion! It was quite an emotional day checking that part of treatment off the long list.
The joy was a bit overshadowed by the meeting I had with my MO right before. I expressed my concerns with having radiation and he told me since the cancer was in my lymph nodes then I need it, he said 25% chance of reoccurence if I don't have it and only 5% if I do. It seems like they want to throw every type of treatment at you to give you the best chance at no reoccurrence but are unsure what treatment is actually working for you. So he wants me to meet with my RO again to discuss this.On top of that he has me scheduled to start zoladex injections in 3 weeks to shut down my ovaries. He said injections once a month for at least 2 years, though he thinks because of my age (42) that it will be longer or I can have my ovaries removed. I also developed cording in my right breast and in my left armpit all the way down my arm so he scheduled me to meet with the lymphedema specialist in the office. I guess I will do like Judy says and just show up!
- oh and I wanted to say a big Congratulations to Keeping Calm for finishing your chemo! I'm sure you are in the days of fatigue but at least you are done!!!
Good luck to everyone you can get through this!Who is next to graduate?
-Christie
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Congratulations Christie on finishing the chemo phase of your treatment! Sounds like you still have quite the journey ahead of you and I sympathize with that
. Keeping Calm--- I hope you are over the worst days and starting to feel better
. Angela---Your grandson is precious!
Judy---Keep showing up and being strong... you got this!
Paula---I love the FB idea and I am definitely interested.
I met with my oncologist today (for the first time in 7 weeks!) and she expressed some concern about why she only ordered 4 rounds of TC and wants me to consider 6
. I hope I have talked her out of it by reminding her why she chose only 4 (low oncotype score), because my last round is supposed to be next Tuesday and really want that to be done! She is setting up an appointment with the RO for me (hopefully this week) and said she will start me on hormonal therapy once the chemo is complete. 10 years of hormonal therapy....ugh. I mentioned my concerns about recurrence and my desire to have a prophylactic on the right side and she urged me to consider doing that before rads start. A lot to consider. I feel like it is still going to be months before I can go home and it is stressing me out! Tonight I ordered Cheesecake Factory for dinner to treat myself and the Door Dash brought my kids food, but not my salmon.....grrrr! I can't win today....lol. Big hugs and good vibes to you all! Cheers,
Sabrina
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Christie, big congrats to you as well! Getting chemo done is a huge accomplishment even if you’ve got more treatment ahead.
As for me, yes day 6 and I am slowly beginning to feel better. I managed a slow walk on our treadmill which is a good sign although am keeping track of my heart rate which was definitely up compared to pre chemo but not to any extreme.
Sabrina, gosh you have really been through the ringer on so many fronts including your messed up dinner order. That probably would have been enough for me to lose it! Did they at least send the correct piece of cheesecake (please tell me you did order cheesecake!). And as for your doctor’s momentary chemo about face - what?! I had a mini moment like that when my MO said to me last week “remember this isn’t the last day of chemo”. I think my heart skipped a beat! Fortunately, she meant you need to remember you’re potentially immunocompromised and have to get through the side effects. Seriously though, how can your MO do that to you? At the end of the day though, short term pain for long term gain (easier said than done). You’re right to be an active part of the discussion though - one would hope she came to the original decision thoughtfully so reminding her of that thought process seems important! Out of curiosity, what was your Oncotype? You’ve got so much to deal with all complicated by being away from home but I suppose they’re might be something to be said for calling 2020 a wash, finishing up whatever is right for you in term of surgery etc, and then going home healthy and all tuned up for a fresh beginning!
Judy and Angela, hope you’re hanging in there this week. And Paula, let us know if it would be easy to set up a private Facebook group.
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Keeping Calm-- No cheesecake....lol. I don't have a sweet tooth! Thankfully I did order an appetizer of Korean Cauliflower for us to share, so I ate that as my meal
. That's the second time this week I have had nothing but cauliflower for dinner! I'm glad you are feeling better and regaining your energy! I have actually never seen my Oncotype score (don't get me started) report, but during a virtual visit with my MO back in May, she phoned the BS to get the score and was told it was 13, which led her to order fewer rounds. Today she tried to pull up the report for me in the system and couldn't find it. BS never scanned it in! She vowed to get me a copy by the end of the week. My MO feels that due to the 4 positive lymph nodes and extra nodal extension, she should have ordered 6 rounds and in all fairness, she may have warned me back then that she reserved the right to add more rounds after 4, but I had hoped she forgot about that.....lol.
Cheers,
Sabrina
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So much happiness and anxiety all mixed together!
Christie: Congrats on ringing that bell! Think of all that you've gone through to get there. You can definitely show up for the rest. You've got this!
Sabrina: You've had such a rough ride with everything. Fingers crossed that your MO finds what she needs and you get to hold at 4. Keep us posted and know that we are totally rooting for you either way--and that you, too, can totally take whatever it's going to be.
For me, 11 down as of yesterday, 12th and final is on Tuesday, so maybe I am the next grad? But with 9 more months of Herceptin on the horizon, I'm superstitious and don't think I'll be ringing that bell until a year from now. (Besides, it would feel weird to ring it and then be right back in the infusion clinic a week later...) Routine echocardiogram on Monday to make sure the Herceptin isn't doing any damage there. Sigh.
I dumped my Facebook account, but have set up groups before and it's not tough. Search the help pages and they should be able to walk you through it. Only advice is that I can't remember if private groups can have more than 1 admin, but that's always a good practice to have a second person in case somebody's account gets all glitchy! Hope that those of you who are moving onto the next phases of treatment and post-treatment will keep us posted here from time to time. Of all the threads on BCO, this is the one that feels most like "home."
--Judy
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Hello Everyone. Yes, I can set up the Facebook group. Can you think of any great names for our group? I have been thinking of names for our group, but really haven't come up with anything that I think would be good. I like the idea of a second administration. Any volunteers?
Christie - CONGRATULATONS! I know that must feel pretty good. I think MO's can be so confusing and it stinks that we are not allowed anyone in with us during our meetings so the other person can hear. It seems that everyone hears things differently and the person who can't remember it all, even while taking notes, doesn't remember everything. It seems like we've asked the same questions and you're right. All statistical data.
Sabrina - How are you feeling? You are on quite a rollercoaster. Will it ever end? I think it will, but I think this COVID situation has a lot to do with the lack of communication. I am so glad she is setting up appointment with RO. I had a unilateral mastectomy too and am considering removal of the good girl for the same reason. They were already postponing some surgeries and I didn't want to be in a position where my surgeon said no and postponed the original surgery which was in April, during the peak of the cases in Maryland.
Judy - I had my 11th yesterday. Final is next week, if all goes well. I received my weekly call to go over COVID screening and reminder about the continued restrictions. The person confirming remembered me and my major melt down over Herceptin when she called to remind me about my first appointment. She said she was so happy that I had only two more and I should ring the bell. First, I have not seen a bell. There are two infusion sides which are on the same floor, but one is North and the other South side which I learned yesterday. I am usually on the North side and have had only one infusion on the South side which is a much better view of the Baltimore Harbor. Like you, I told her I would not be ringing any bells until after I finish the Herceptin portion 9 months later. She said, "oh just ring it twice". Um, no thank you. I will ring it once if at all and that will be after the year is finished. I am a bit superstitious as well.
Have a great weekend. I am thinking of you all. I will start looking into a private Facebook Group.
Paula
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