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Starting Chemo in April, May, or June 2022

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sarahmaude
sarahmaude Member Posts: 336

Starting a thread for anyone starting chemo in April, May, or June 2022

I'll have my first treatment (TC) on 5/4. I'm determined and scared and hopeful for excellent results. I'll be cold capping, my adult daughter will be my assistant. I hope to be able to continue working as much as I can through treatments. I can telework as needed and have ability to flex around appointments.

Anyone else getting started around now?


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  • sarahmaude
    sarahmaude Member Posts: 336
    edited April 2022
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    I'm looking to gather anyone recently, currently or imminently going through treatment. If you started in March join in. If your treatment is still fresh in your mind and you want to talk, be here! If you might be starting in May or June, please post.

    I want us to be able to surround each other with the kind of support only someone who is experiencing the myriad emotions breast cancer treatment can bring.

    Even if you are hesitant to join in let me know you are here. I'm going to try to share my thoughts and journey. If you understand and relate, think I'm whining too much, have advice, humor, or have your own stories and experiences to add, or really anything else, join in.

    I'm going to post 4 times day for 4 weeks. I'll answer anyone who posts anything. I see groups that are 4 years old that still interact. Let's join together to be stronger in our battle.

    Cyndi

  • ruthbru
    ruthbru Member Posts: 46,933
    edited April 2022
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    Cyndi, I just saw your post on the 'glitches' thread. I am long past chemo, but do have a few tips.

    *if at all possible, call the dentist for a checkup/cleaning. You can have dental work done while on chemo, but it requires taking antibiotics etc. so it's good to go in with that out of the way. Usually dentists leave some openings for emergencies, and I used one of those spots for a cleaning before starting chemo.

    * decide what you want to do about your hair before you start. Whether it be getting fitted for a good wig, cold capping, getting some cute hats/scarves etc. You might want to consult with your beautician. Mine told me to use Nioxin Shampoo for chemically treated hair during chemo (because even if you don't have hair, your follicles are being treated chemically from the inside out. After I was done with chemo, she told me to use the regular Nioxin shampoo until my hair was back to its full body (it came back very nice, so perhaps that was the difference?) Cold capping wasn't an option when I had chemo, so I'd check with somebody who'd know before following this advice if you are cold capping.

    *My dentist recommended that I use Biotene toothpaste & mouthwash. I liked the mouthwash so much that is still what I use.

    * Dove soap is the most gentle.

    * I would keep both my fingernails & toenails polished. This is word-of-mouth but it seems to help to keep them from becoming brittle.

    * if you have friends who say 'let me know if there is anything I can do'.......tell them what they can do! Whether is is bringing an occasional meal, running errands etc. it will make them feel better if they can actually do something that is helpful. I really, really, really appreciated friends bringing meals, so that is what I now do if a friend is having issues that makes cooking a chore.

    * get some exercise; even if it's just walking around & around in a circle. As odd as it seems, exercise will actually make you feel better, may help treatment to work better, and will help you bounce back quicker after you're done.

    * If you are up to it, keep at least a semi-normal schedule. Sitting around thinking about cancer all day is not healthy mentally for sure! Also find some funny movies, TV shows, series to watch and engrossing books to read for when you aren't feeling great. Escapism is good!

    *Stay very, very hydrated. Take all anti-nausea meds exactly as directed.

    * Eating healthy is great, but don't stress about that right now. Eat what you can stand; but not too much of it because you don't want to come out of this with extra weight to lose. It was probably a good thing for me that chocolate tasted like chalk to me while I was doing chemo!

    Those are just some tips from the top of my head. Wishing all the best to anyone who is soon starting chemo! Hang in there, this too shall pass.



  • sarahmaude
    sarahmaude Member Posts: 336
    edited April 2022
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    Ruthbru,

    What a wonderful list! I’m calling the dentist on Monday to see if I can get in either same day day or Tuesday. I won’t sweat that too much since I just had a cleaning in January. Have been blessed with good teeth, hope to keep them that way. I just got both Biotene mouthwash and some spray for my go bag. I ended up with a different toothpaste that is similarly gentle.

    I’m going to Costco tomorrow and getting a larger package of toothbrushes that I plan to replace at each treatment. When I was a freshman in college I had a viral infection where I had over 30 canker sores in my mouth. I did not enjoy that. Mouth care is a priority of mine!

    I’ll make another hair post later. Another area where I’m hyper focused.

    Cyndi.

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Today is a good reminder that life goes on whether or not I’m starting chemo this week or not. But, chemo still is a part of my family’s life even on a day when iI wish it weren’t.

    My daughter is graduating from university tomorrow. I’m so proud of her! She has severe anxiety, ADHD, and depression, and 7 years after her HS graduation has finished her degree. There have been terms where she has had to drop a couple of courses, terms where she could only take a course or two, and she is now finishing!

    Her graduation is midday tomorrow, and due to family needing to travel immediately after graduation tomorrow, we’ll be having a family meal (restaurant, I did cook last night, but am not cooking today) late this afternoon and then go take photos afterward.. I’m glad we’ll get some family pictures with me in them pre-chemo. Is that vain?

    Before we go to lunch, we’ll be holding Cold Capping boot camp. Both my husband and graduating daughter will be learning the drill. Daughter will be my assistant this week, and husband will be with me for the next 3. At least that’s the plan.

    So, some families have game nights. Learning to cold cap is a game, right?

  • ruthbru
    ruthbru Member Posts: 46,933
    edited May 2022
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    Congratulations to your daughter! Absolutely take lots of pictures!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    My checklist to treatment number one is getting items crossed off.

    1. Cold cap practice number one: done
    2. Basic care items purchased: done (lots of mouth care, gut care, hair babying items, nail care, body plus hand and foot creams)

    And our family dinner and photos went well. Graduation starts at 10 am tomorrow. Need to leave by 8:15 to be there on time.

  • ruthbru
    ruthbru Member Posts: 46,933
    edited May 2022
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    Enjoy your day!

  • cathy67
    cathy67 Member Posts: 411
    edited May 2022
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    Sarahmaude,

    I am here to support you! My daughter is graduating from high school this summer, she was ADHD as well.

    Also, I studied a few other articles about ultrasound features for different breast cancer types, they have similar conclusions. Good news is, mine looks like hormone positive not TN, bad news is, mine looks like hormone positive breast cancer a lot. Anyway, I feel relax. You are awesome.

    Lets count down together, May 4 is also my day 1, biopsy day. My second breast biopsy, 3rd biopsy in life,1st happened during my pregnancy. May 4 is also our wedding anniversary.

    Cathy

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    SarahMaude -

    Hi there! I just got home from my first chemo treatment. Got Herceptin for 90 minutes and then Taxol for 1 hour. I'm having it weekly for the next 12 weeks. Then the Taxol ends and I continue on Herceptin every three weeks for the next year.

    First treatment was piece of cake!!! No side effects at all from either drug. I didn't even know when the meds were going in, no difference between that and just the regular saline IV drip. I did get a port. I hadn't planned to, but a couple of my RN friends who work in oncology said I should definitely get one. So glad I did. The surgery to get the port was last week was a bit rough after and I had more pain with it than with either of the lumpectomies or node biopsy, but I think it was my body finally deciding that three surgeries in a month was enough. Accessing the port was easy. The only thing I noticed today was when the Benadryl went it, I got sleepy for a few minutes, but that went away. I tolerated the steroids well too.

    My RN friends said just like with pain meds don't chase the nausea with meds. They said go ahead and take them as soon as your doctor allows and keep taking them for a couple of days before trying to come off to see how you do.

    Thanks for those tips ruthbru! I actually had my six month checkup at the dentist already scheduled for last Thursday so I was going to get it done before starting and the dentist ended up cancelling on me and I couldn't get in. I'll try and get in very soon though. I have the Biotene and have started using it. Mouth sores are a big fear of mine after seeing a friend go through it (although on a totally different chemo drug). I like the idea of changing out toothbrushes. I'll have my husband pick some up. I did eat fruit juice ice pops when the Taxol was going in to keep my mouth cold. They have those at Costco too. Made by Welch's.

    I did use the ice gloves and socks during Taxol. No one at my cancer center seemed to think it does anything or but they didn't discourage it anyway. I'm going to do them and cross my really cold fingers it keeps neuropathy away.

    Congrats on your daughter's graduation!! And I know exactly what you mean about getting those pics now. I did find a really great wig that looks just like me. At this point I'm probably ready for it to go ahead and fall out since that's what it's likely going to do. Again the waiting on it and wondering how it's going to go is stressful.

    Heading out in a bit for a walk around the neighborhood. Decided I will try (weather permitting) to do that every day as well as getting out and watering my flowers. Just want a goal that no matter how I'm feeling, to do something that takes my mind off of it and makes me feel better.

    Thinking of you and sending big <<HUGS>> for your first treatment!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Hi alleycat5!

    I’m so happy to hear you are feeling well after your first treatment. It does sound like the port wasn’t so fun, but I’d want one too with weekly treatments. My MO said with me going every 3 weeks for 4 sessions she didn’t recommend it for me. I was also interested when she said my right arm with the treated blood clot will be a better choice for my treatments than the left arm where they took my single lymph node. I was glad to get that answered.

    I’m also going to be diligent about moving as much as I can. I’ve been walking for 30 minutes every day for the last several weeks. I’m hoping that even if I am slower and have to take more trips I can still get that total time in during treatment.

    Well, I’m on my way to take my last normal hot shower where I can wash my hair at the same time. Same with using a hair dryer with hot air. From here on out hair is washed in lukewarm water and air dried. That lasts until winter.

    I was so glad to see your post! With daughter graduating, and then having to jump into work, I haven’t had so much time to think about Wednesday. I think you are right about not only moving, but doing “other” non-cancer things will make these days pass more quickly and with more joy.

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
    edited May 2022
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    Hello fellow “Sarah” Maude - While I don’t meet the requested “starting chemo” topic, I wanted to jump in and offer support. We have many similarities in diagnosis and treatment - same Grade 3, single hormone receptor, high Oncotype, chemo; and yes, I cold-capped too. A couple of quick thoughts - after my first chemo, I felt pretty darn good. Amazingly well. As I’m sure your MO has indicated, chemo is cumulative; so while life was pretty normal for me after Chemo #1, it took a bit longer to bounce back after each session. I would also recommend buying some straws - liquids lost their taste after chemo #3 and drinking thru straws helped me tremendously. Lastly, even with capping, I lost a lot of hair, and it was a shock when my hair started shedding. I became obsessive about the daily shedding. But, while my hair was much thinner, some folks never knew I was going thru treatment. And 2+ years later, it has grown back thick an it’s long.

    I’ll be thinking of you - and the others on this thread - and wishing you minimum side effects and easy days ahead!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Hi SarahSmilesAtMe! It's really good to see someone who followed my path with success. Straws are something I keep around here, so that's a good tip to use them when I lose sense of taste. Not looking forward to that.

    I'm glad to hear treatment #1 will not knock me down so much. I have a lot of things going on this month, so I can make sure that I make the best of that time.

    Hair. Ugh. I just realized that the Arimidex I started in early March has already caused me to have some thinning. Strange how when it's gradual, you wonder, but I didn't know for sure until I saw some recent photos. I'm going to do the best I can, and whatever I can retain I'll look at as a head start on the future. I'm going to try not to obsess when I start shedding, but it will be what it is.

    Thank you for stopping by!

  • blums8
    blums8 Member Posts: 18
    edited May 2022
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    Hey there, Good Luck tomorrow. I finished my first 12 week protocol last week and start the new one tomorrow. I am nervous because I know I might react differently to this protocol. I handled my Keytruda, Taxol, Carboplatin pretty well.

    Tomorrow starts the AC with the Keytruda. I will be sending positive thoughts your way. I like your idea of switching tooth brushes. Will you do it after each treatment? Also last week when we were on the Thursday call someone mentioned using ice chips during treatment; I think I am going to ask about that.

    Congratulations on your daughter's graduation. That is fantastic. I hope it was a nice day. I have been so covid paranoid that I haven't really been doing anything but taking walks when the weather is nice. I think I will try to get in the garden a bit more now that it is warming up. I look forward to getting back to "normal" activities but for now I am trying one day at a time.


    Take Care,

    Janice



  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    After my first Taxol/Herceptin treatment yesterday, I'm still feeling great today. Still no side effects. I've cleaned out two closets and been organizing all day. I'm really hoping this lasts, but wondering if the cumulative effects Sarahsmilesatme mentioned will catch up with me?

    I also wonder if I'm still on a steroid high? Anyone have any thoughts on how long that may last and if I should expect a "crash" from that?

    SarahMaude and Blums8 - I'll be thinking of both of you tomorrow for sure!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Alleycat5, I’m glad you are feeling well still!

    So, my daughter who was my cold cap partner tomorrow was exposed to someone with COVID yesterday. She won’t be able to enter the treatment center. My son is having to take tomorrow off work to help me. I think he’ll do fine, but I can tell he isn’t very excited. I’m feeling a little anxious. I got him to practice putting the room temperature cold cap on his knee and to watch the videos.

    At least I know he can lift the cooler full of ice and caps.

  • trippositive
    trippositive Member Posts: 21
    edited May 2022
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    Hi sarahmaude,

    I don’t fall into the category of starting chemo or in chemo… I am almost a year out of my 52 weeks of treatment and on the aromatase inhibitor letrozole for 5 years.

    Maybe you can learn from my mistakes.

    Exercise, not a joke, definitely move every day. I was so sick and all I did for the entire year of chemo, surgeries and radiation was lay in bed. I was a runner and road biker prior to cancer. I gained 40 pounds, the only thing that tasted good to me was sugar, which I never liked before. Since then I have done a lot of reading and have been on a pretty strict cancer diet and have lost 30 pounds so far.

    Corona was high so no one could come and see me and I was very isolated. I lost a lot of friends because “cancer” scares a lot of people, and I really didn’t want to talk to anyone. You have a great attitude, keep it!

    Hair. I had long hair, highlights, thick and straight. I did the cold cap and lost my hair after the first couple treatments. Looking back, I should have cut it shorter and maybe cut some layers, I had so much hair that the cold couldn’t get to the scalp well enough. Tighten that cap. I also don’t think I had enough water on my scalp as well when I put the cap on. Be prepared if you do lose your hair with wigs, scarves, whatever you like.

    Stay positive, keep that great attitude and know there are lots of us here to answer any questions you may have or just hear you.


  • blums8
    blums8 Member Posts: 18
    edited May 2022
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    Good Luck today on your first treatment. I hope it goes really well. I will look for you tomorrow night on the support group if I make it. I am off for my treatment too. I sent a note yesterday but I don't think it posted.

    Take Care,

    Janice

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    blum8, thank you! I’m feeling nervous about the day for sure. Not sure how well I’ll be able to participate tonight in group as I’ll still be changing caps every 25 minutes.

    Trippositive. Thank you for your lessons learned! I need to start hydrating now! I am really bad to get busy and forget to drink. I’m worried about getting the fit of the cap right, but we’ll do our best.

    On the movement, I didn’t even have chemo and during COVID first year I also gained about 15 lbs. I’ve lost all that, and hope to keep it up. Worried a bit about getting my head hot and undoing my cold cap work. Maybe I’ll walk at the mall with all the retirees? Or I can walk the halls at work in AC. Good suggestions.

    I am so very appreciative of all of you who have come here to support me. If I haven’t typed your name, please know I have read every word here more than once! It means everything to me to have you share your experience, advice, and positive thoughts! I need to dash to hydrate and buy dry ice. The game is on!!

  • ruthbru
    ruthbru Member Posts: 46,933
    edited May 2022
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    Good luck! No matter what, it will be one session you can cross off the list!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    A quick update from the chemo chair. It’s all gone well today. A little delay in starting. Guess they were running behind, then another 30 min wait for my Dr. to finalize orders.

    Premeds and Taxotere are complete. Waiting on the last of the Cytoxan the drip through.

    My son has developed a good rhythm and technique on the cold capping. It’s a lot of work. The first 8-10 minutes were brutally cold, and I had a headache. Now, it’s not even a little uncomfortable.

    When I iced my hands and feet during the Taxotere portion, that was miserable. I decided I’d just use their system, which is 8 minutes ice bags: one pair for each hand and foot. Next time I’m using the gel packs. Had them for my hands already. Don’t know why I decided to switch.

    One day of treatment down, 3 to go

  • ruthbru
    ruthbru Member Posts: 46,933
    edited May 2022
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    25% done!

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
    edited May 2022
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    I was hoping for an update! Glad things are going smoothly! And yes, capping assistants do work really hard! There is no break really….
    Your comment about the “Cytoxan drip” gave me a flashback… I remembered telling the nurses that I wanted Every.Single.Drop. of the TC (roll the bag like your toothpaste!). They laughed and laughed. 😀

    I hope things continue to go well!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Made it through treatment one! I will say that cold capping makes the time fly by. I’ve still got 1 hour left to keep changing caps. The cold on my scalp has been surprisingly bearable. The first 10 min were moderately painful. Like a really bad ice cream brain freeze. After that, it’s just the repetition of the whole cap rotation over and over. We started too early as I didn’t realize the first hour is premedication, so next time we can avoid me capping at home first

    As we close to finishing today treatment another patient stopped by to encourage me. She had finished her TC treatment in July of last year and also used Penguin cold caps. She kept most of her hair and was very happy she’d been able to use them. It helped meeting her. We’ve exchanged phone numbers, so I’ll be glad to have someone local as a resource in addition to my friends here.

    As I left, I noticed that the vein in my hand I had used was huge. The bandage the nurse had placed when she removed the needle had slipped and the self adhesive tape wasn’t covering the injection site. With my Xarelto, I ended up with a hematoma. A different nurse bandaged and wrapped it criss crossed over under and behind my thumb. She said to leave that in place for a few hours. I expect to have some bruising, but it will heal.

    I feel a little swooshy from the steroids I got, but other than that I’m very well. Glad this milestone is in the past. Now to see how the next 5 days go.

    Neulasta injection is tomorrow.

    Again, thank you so much for all your support. It is a crappy way to meet so many amazing people, which why I’m firm in my opinion that things many happen without a reason all the time, but that along the way after tragedy, some great things happen. Kind of like Mr. Roger’s says, look for the heroes. You are some of mine!

  • blums8
    blums8 Member Posts: 18
    edited May 2022
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    You certainly are a hero too. Reaching out to everyone and posting here everyday. It is nice to have this support in the midst of all the chaos and anxiety. I was glad to make it through yesterday as well. It was not bad. I was very tired on the way home and last night. Today I just feel a little foggy. I took Dexmethosone ( don't think I spelled it correctly) this morning. I will take it 2 X a day for 2 days to help with nausea. I get my Nueslatat through this strange little "box" on my arm. It will start working today at 6:45 I believe. When a a red light starts blinking, I will take it off and throw it away. Technology in the Pharma industry is kind of wild. I am also taking Claritin to help with the bone pain side effect from Nuelasta. Did they tell you that?

    Hope you have an easy day today.

    So glad the cold cap is working for you. Way to go.


    Janice


  • ruthbru
    ruthbru Member Posts: 46,933
    edited May 2022
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    Make sure it's Claritin, NOT Claritin D!

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Just got my Pegfilgrastim injection (Neulasta equivalent). Mine is the Nyvepria brand. The nurse said only half of patients have pain from this med. I've been taking Zyrtec (my doctor's recommendation, which somewhat works for my allergies, unlike Claritin) twice a day in anticipation, so hopefully I'll have no joint pain.

    Ruthbru, you are so right to watch out and not take one of the "D" versions. I'm jittery enough from the steroid I got last night, anything else is a big fat no!

    Not sure if anyone else has caught silly errors on their patient portal pages. Makes me very confident to ask lots of questions! One of the mistakes is that they had me taking Allegra-D instead of Allegra. They also have my height wrong by 1.5 inches in the hospital chart. And, my lumpectomy pathology apparently time traveled, they received the samples the day before my surgery and had my results just as the surgeon wrapped up the real surgery. According to my BSO, that date error was from a template issue in pathology. I wish they could fix it. I twitch with such errors! We don't seem to have a good way to report errors. I just try to fix what I can when I return.

    blum8, when I went to the Dr. for my shot, I asked about the Neulasta box alarms. She said they used to to those more often, but that they had a lot of user errors, and some issues with the company not sending sharps containers, so now they mostly do the injections. The drawback is for people who live a long way away, and they continue to use those for them. I'm 10 minutes away, so not having something attached to me is worth running there and back (especially since I should only get four). They gave me Decadron via IVP (in a syringe) yesterday and Akynzeo by IV yesterday for nausea. I have zofran and something else I can take starting on Saturday once the IV meds wear off.

    I'm feeling very well today. A little dry mouth, which is helped by Biotene. My thumb was numb, and I briefly panicked before realizing that my hematoma was causing that. I confirmed it with the nurse who gave me my injection. So...with the injection, week 1 appointments are done! Hooray! I'm off until next Wednesday when I get routine labs.

  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    My Friday news bulletin:

    I've concluded that the steroids they gave me have me very ramped up. I've got a normal medication that has amplified their effect, and I feel like I'm an energizer bunny (literally on steroids). Glad to have no pain or nausea, but wow! I've made simple errors on some charts at work, and my ability to finish typing sentences here requires a lot more focus than normal. Glad I'm not doing surgery on anyone or turning wrenches on a rocket.

    I was able to do my normal walk last night. On these steroids, I'll bet I could have doubled it, but I didn't. Slept well last night, but had some kind of upsetting dreams. Probably also the steroids?

    I don't know if I wrote about my hematoma where they did my chemo infusion. Since I'm using my own veins, I asked them to start low. Well, they put it in the lowest part of my thumb, about 2 inches above my wrist. Not terrible except it made icing during taxotere difficult, and when they removed the needle, the nurse doing so didn't wrap the bandage around my thumb well. The bandage fell off almost immediately. I was getting ready to leave and looked at my thumb, and it was huge. Due to my blood clot meds (Xarelto) and no pressure after the needle was removed, I have a hematoma. Another nurse did a beautiful job wrapping it, and when I removed the bandage, the swelling was down. Yesterday, at my "neulasta" injection, I noted that my thumb was numb, and the nurse was positive that was from the hematoma. Today, my feeling is back, so I agree, it was the hematoma (not neuropathy). It's pretty ugly, I'm bruised from the middle joint of my thumb all the way to my wrist.

    I called the doctor's office today to ask about my jitters, and they said to hold the other med tomorrow, and for next chemo appointments and for the three days following treatments. I also mentioned the hematoma, so they now have an order added to my protocol to apply extra pressure to my IV site following treatment due to me being on Xarelto. Overall, though, I think I did very well for a chemo newbie.

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    Hi all! I'm coming to the end of my first week after my first Taxol and Herceptin treatment (had it on Monday). I had no side effects at all during the week. Like SarahMaude I think I was a bit high on the steroids for a good bit of time. I cleaned and organized, worked in my yard every day, and was out for daily walks. No nausea or anything. I am thankful for this "feel good time" because I know over the next 11 weeks, there may be some rough days ahead.

    I did just have a nosebleed and the blood seemed extra thin. I ran in the bathroom and it was dripping on the floor. My husband even said how weird it looked because the drops were really thin blood, almost watery. Anyone have anything like that happen? I will be sure to mention it in my next treatment appointment on Monday.

    Hope everyone has a restful and wonderful weekend!

  • katg
    katg Member Posts: 206
    edited May 2022
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    I had my treatments from August to November. I do not recall an effect from steroids. I do now that them giving the Benadryl kept me drowsy for at least 1.5 hours. By the end of my two chemo's, I was good to drive home. I had a port put in because of my 12 plus 4 infusions. I did not have any problems with it. It needed to be flushed once as my blood draws stopped and no chemo infusions. Now i am back to using the port for my Herceptin and Perjeta. I was a platelet donor for 25 years at the Red Cross, so i have a vein i have used hundreds of times and i just did not want to use them over and over. The port has been great. I got the cram for numbing and never used it!! The needles are not painful for me.

    We are offered a sandwich and a snack or two with juice during the treatments. I must say i just was not interested in food so much after about my 5th infusion. Crackers, graham crackers... Chocolate for me tasted bad. I drank a lot of water. I could eat oranges, bananas and fruit. My Trader Joes Greek yogurt was good too. You will only know once you eat it. Each of us is different.

    I only drank crystal Geyser water. Nothing else really. These sparkling drinks with antioxidants, raspberry i could drink. No coffee and nearly 0 tea. I did enjoy tortilla chips, but as with all food not a lot. Smile meals more often. Eat what tastes good. I was told by the care team that worrying about gaining weight is not necessary during chemo. Eat what you can. No sugary drinks. Plenty of water to flush out the chemo!!! Half your body weight!!

    I was told about icing, and really i had no need for it. My nails turned rather dark and brittle, but once chemo was over, they started to grow. A friend said they looked like an upside-down French manicure. Oddly, they were very strong, i had never had thumb nails, so that was interesting. Once i started to do more, go out more, like about Early March, they started to snap off. I began to file them. My lefthand is doing better. Not much dead nail. The right has more growing out. My toenails, almost all dead. Interestingly, they did not fall out, my chemo ended soon enough that the nail bed is growing the nails again but slow. The toenails went closer to the end of my chemo and a month later. Another young lady i know said to check my toes as it happened to her. Yep.

    I lost 25 pounds. I called it my Covid weight. Since i was able to eat most anything in February, so i have gained 5 pounds. I am not eating after 6:30 pm and eating good fruits, veggies and healthy grains. With some chocolate tossed in.

    My blood was message up with chemo. I walked around where i live, but i could not go far. My red cells were super low and fatigue got me a lot. I was hospitalized in mid-November. A fever and low blood counts. My weight came off a pound at a time. Less eaten. The hospital food at COH was GREAT! I could not eat a lot, so i did not eat a lot. I just delighted with the menu options.

    I had biotin and i was just reminded to keep using it!! I did not have mouth sores. My dentist trip was great. Only if i had radiation did she say come to see me in between cleanings.

    Zofran was my buddy over the 12 weeks. Another med a rotated with it that starts with a C were great. I just took them day 2,3,4 after chemo treatment. I did not want to wait till i might feel queasy, so i seldom ever felt queasy.

    I started to wear bracelets for my chemo treatments, then at 6, i kept 6 on and took one off after each treatment. The chemo as my friend in Texas said is given to us to kill the bad cells. Let it do what it is meant to do. If you feel achy and more. The chemo is working. That friend in Texas is into 2 plus years at Stage 4. She is plugging along....at MD Anderson in Texas. She had few side effects. Remember, if you are feeling real tired, pay attention. Fatigue hiot me more than once and that one time i spoke of earlier had me hospitlized.

    Awake each day with God I am ready. See and feel how you feel. What you actually feel.

    Yep, once i start writing, I keep writing.

    Kat g


  • sarahmaude
    sarahmaude Member Posts: 336
    edited May 2022
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    Monday update:

    Feeling a lot better for the most part. Over the weekend my tongue was really sore. Felt like pizza burns on both sides, but not the center of it. So far I've escaped nausea. I guess my big steroid dose was successful. I'm glad I started Colace and Miralax because they are working enough to keep my gut moving. My tongue doesn't hurt today My mouth is dry and even Biotene and other oral moisturizers aren't helping that much.

    Yesterday I was really tired. I did take a walk with my daughter, which was nice, but I also took two naps, which is highly unusual for me. Energy is much better today.

    I feel like I've got a constant little headache that doesn't stop. I take a dose of Tylenol once or twice a day and it's manageable.

    The most annoying symptom right now is my nose is very dry inside. I'm worried about having a nosebleed like Alleycat. I'll answer her somewhat by saying that as a kid I had a lot of nosebleeds, and many started off very thin and watery. I'm worried about not clotting if I get one since I'm on blood thinners. I think I'm going to pick up a fresh jar of petroleum jelly and see if that helps. I've got a humidifier running, and that seems to neither hurt nor help.

    Yesterday was enjoyable. I made some deviled eggs and green beans; my husband and daughter picked up some fried chicken, macaroni salad, potato salad, and fresh fruit. Watermelon tasted amazing. I actually had dessert, they brought an adorable tiny cake that was made with sugar cookie crumbles. First sweet I've had in months!

    Excited at getting to wash my hair again tonight. Hair care rules with cold capping are strict, but for me, it's worth the chance it will work.

    Small blessings: watermelon, cake, walking, napping, and all systems working well enough. Heart