Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Starting Chemo May and June 2024 Support Thread

Options
13468911

Comments

  • Love4All
    Love4All Member Posts: 77
    Options

    @fossf56 geez, that 💩 sounds awful! I’m so sorry you’re dealing with that. Glad you are being proactive with the fluids! I hope the meds continue to provide you relief 🙏❤️

  • Love4All
    Love4All Member Posts: 77
    edited June 15
    Options

    @dw0330 I’m so glad that you’re happy with your hospital staff and doctors! That makes a huge difference when you trust you are in good hands ❤️

    I took the Claritin for the week, but it didn’t help me at all 🤷‍♀️

    Good idea getting used to your short hair and beanies now. My kids are grown, but both home for the summer and I think they’re even struggling seeing me with my short, gray hair (it hasn’t started falling out yet). I cut my hair really short the weekend before chemo. I had been growing out my natural color for about six months before my diagnosis, so instead of my usual dark brown hair with golden highlights, it’s mostly gray with a lovely charcoal peppered in 😩😂. It makes me feel so old, but I just got tired of the skunk stipe I would get two weeks after every hair appointment… that made me feel even more frumpy! Somehow the universe gave me the push to stop dying it all those months ago and I’m so glad I did. I had already cut it quite short to get the brown out, but once I learned I needed chemo, I chopped the rest of it off! It’s amazing how attached we feel to our hair, like it’s part of our identity.

    It’s only temporary, it’s only temporary, it’s only temporary… 😮‍💨

  • ebfitzy
    ebfitzy Member Posts: 75
    Options

    thank you everyone for the birthday wishes! I tried to enjoy it the best I could. I could taste my ice cream cake so that’s a plus. Biggest disappointment I’ve had lately aside from feeling blah is not tasting and enjoying my COFFEE. Ugh!!! Day four post chemo and I’m slightly nauseous and my mouth and teeth HURT. So I’m going to try warm saltwater swishes. Also I’m noticing my head being sensitive? No hair loss, just sensitive. When do we start going uphill again? Hoping I can have a couple of weeks of normalcy before my next chemo treatment!

  • klyking
    klyking Member Posts: 13
    Options

    I am getting a little nervous - I have only had minimal side effects - tired and a little achy - I am waiting for the other shoe to drop. Has this happened to anyone else - where the side effects kick in hard after 4 days? I am doing TC chemo - which I understand is milder but I don't know. My MD said I would have fatigue, nausea, slight pain from Neulasta, constipation and mouth ulcers. I have been taking immune support vitamins, pepcid, ibuprofen, ondansetron (nausea) and I have a biotene mouth spray. I also take claritin 24h every day.

  • Love4All
    Love4All Member Posts: 77
    Options

    I think everybody’s experience with chemo will be unique to them. That being said, I’ve heard from several oncology nurses I’m friends with that day four is usually the worst as far as symptoms go. So if you’re feeling crappy around this time, that’s probably the worst it’s gonna get this cycle. Most people start to bounce back after the first week (it took me two full weeks to feel normal again, but I had a sinus infection that knocked me out). My taste buds came back to mostly normal after about day ten. Hang in there!

  • Love4All
    Love4All Member Posts: 77
    Options

    I’m so happy to hear that you’re having minimal side effects!! What a win!!! Everybody reacts differently to the chemo, so don’t be nervous. You’re just lucky 🥰. Be careful with the supplements, though. You should NOT be taking anything with vitamin C in it.

  • bailey.boo
    bailey.boo Member Posts: 166
    edited June 17
    Options

    hi everyone! Hope everyone is feeling good today and had a wonderful weekend!

    I’m on a TCHP protocol. I start feeling worse for the wear around day 3 or 4. I seem to get a slight reprieve after day 8 or 9, then get hit again with last hurrah side effects for a day or 2. This time being online just drained me. Also kept seeing lots of weird flashes. I also got a cold and cough this time around. I’m coming out of all of that now.

    Two rounds of chemo down for me, 4 more to go. I was dealing with some leg burns (from a steamer— be careful when steaming wigs!), but I went to wound care, and things are starting to heal, which is a great sign.

    @ebfitzy Happy belated birthday 🎂💕

    @sarahjunefox I felt so much better once I finally buzzed it off. I hope you do too ❤️

    Loving all the pics!

  • amesisland715
    amesisland715 Member Posts: 9
    Options

    @ebfitzy Hi! I am on TCHP every 21 days and am still working full-time. (mostly!). I am fortunate that I am able to work remotely! When I first started chemo and before I started losing so much hair, I did go into the office. Now that I have lost most of my hair, I don't want to go into the office and answer questions from people who do not know my situation. My department (8 of us) all know but the other departments do not. Because I have so many appointments and am quite tired after chemo, I do have to end early some days! I find working keeps my mind busy which I love. I am also keeping active and trying to keep life as normal as possible! I like to try to see "silver linings" in every day! Like the other day I said to my husband… Oooh I don't have to shave all Summer! Ha ha!

  • amesisland715
    amesisland715 Member Posts: 9
    Options

    @Love4All Can you share the video you found on hair loss? Thank you 😊

  • amesisland715
    amesisland715 Member Posts: 9
    Options

    @Love4All Soooo, I asked you to share the link with the video on hair loss and just realized that it is the same website that you posted (www.hatscarvesandmore)! Can I blame it on chemo brain? Or that I haven't had my morning coffee yet? Thank you so much for the information. That video was extremely helpful!

  • Love4All
    Love4All Member Posts: 77
    edited June 17
    Options

    @bailey.boo Wow, sounds like you went through the wringer! Hoping things continue to improve/heal for you ❤️

  • ebfitzy
    ebfitzy Member Posts: 75
    Options

    day 6 post first chemo- headaches waking up with them and they are debilitating. Ugh. Also I’m feeling like a pressure feeling like maybe my blood pressure is up. Is that a normal thing to deal with? Anyone have the headaches like this and do they get better?

  • bailey.boo
    bailey.boo Member Posts: 166
    Options

    I hope you feel better soon, @ebfitzy! Mine goes up and down, but I just pop a tad more BP meds. I’ve carried high BP since my first pregnancy, 32 yrs now. Do you have a BP cuff at home? It’s nice to have for peace of mind.

  • Love4All
    Love4All Member Posts: 77
    edited June 18
    Options

    @ebfitzy Yes, I basically had a headache from the day after chemo until a week and a half later. The body aches and the headache were a royal downer, but they both got better eventually. I’m now exactly 14 days post first chemo and I feel like myself again! I have my energy back, no body aches or headache, and my taste buds are back to normal. My hair just started to fall out today, but I expected that. Gonna give it a few more days if I can, then shave it off. Also, yes, my blood pressure felt really high (like my heart was gonna beat out of my chest), but it is back to normal now. I would have to sit and rest just walking from one room to the other some days!

    Hang in there! Just take it one day at a time (I know sometimes it feels like the clock is moving backwards!). You will feel better again ❤️

  • jlhmom75
    jlhmom75 Member Posts: 14
    Options

    I’ve gotten through the last week but it’s been difficult. My son was sick – he’s recovered – so that was stressful. Then we had his high school graduation party this past Saturday – 2 days after my 3rd treatment. Very thankful for my family for getting me through. The party was good. But I am now down for the count. I’m not sure if it is cumulative side effects and they is why it is worse or if I just wore myself out.

    I too am having heartrate issues. Any time I get overheated my heart starts to race and I get lightheaded. I’m having to just have a bare head most of the time so I can get through this.

    @ebfitzy I have not had the Neulasta shot at all. My last WBC was 7.9 so I’m doing okay without it. But I still have body aches really bad right now just from the treatment.

    Each cycle now my worst days have been days 4 through 7. Dizziness, digestive issues and now body aching are the primary issues. I cried for the first time last night because of the symptoms. Plenty of tears from fear or anxiety before, but last night it was the first time I was sooooo uncomfortable. Just feeling like such a long road right now. Still have 5 more cycles planned. Trying to keep my head up.

  • Love4All
    Love4All Member Posts: 77
    Options

    @jlhmom75 Holy cow! I am impressed that you even got out of bed for the graduation party. Count that as a win! I’ve heard from other friends who went through treatment that the effects are definitely cumulative, but also they advised me NOT to push myself because I would pay for it later. I’ll bet that’s what is happening to you now. I’m sure it was worth it to celebrate your son’s graduation, though ❤️

    I would recommend taking it easy as best you can (NO GUILT or SHAME!). Your body needs rest during treatment, and that is ok! Everyone is different, so just listen to your body and rest when you need it.

    Also, I would not focus on the “long road ahead” as that will just bring your mood down. Instead, what I like to do is pretend that I just have a nasty flu (instead of chemo). That way I trick my brain into knowing this is manageable, very temporary, and that I will feel better in a week or two. Then when I start to feel better, I just tell myself I don’t have cancer and I go about my days like I normally would. It’s a mind trick that works for me. It keeps me from ruminating on the “long road ahead”.

    And, know that you may not have to have ALL of the chemo they are prescribing. Ask your doctor if they can lower the dose. Also, they may just want you to have five or six out of the seven treatments. Seven might just be the goal, but the efficacy may be the same with less actual treatments. Might be worth discussing with your medical oncologist. Two of my friends got to skip doses because the side effects were just too much to deal with, but the doctors were happy with the amount they already had. Just something to consider.

    Sending you lots of loving energy and support! All of this is temporary. You will feel normal again! ❤️

  • justsnapd8
    justsnapd8 Member Posts: 59
    Options

    After my Alaska cruise and a tough bout with Covid, today was day 1, finally. It's been a long day! I'm staying with my sister for the time being; so trying to settle in. I live alone but need help monitoring fluid intake and meds. No SE, yet. I had Keytruda, Carboplatin, and Taxol. I appreciated the Benedryl nap during Chemo. We'll see what tomorrow brings.

  • fossf56
    fossf56 Member Posts: 32
    Options

    @ebfitzy headaches and high heart rate can also be caused by dehydration. If you can up your fluids, or maybe get fluids at your clinic it could help. It has been helping me.

    @Love4All we are on the same chemo schedule and I've noticed my hair coming out today. Thinking that I'll shave it off after my chemo next week.

    I met my oncologist who is sadly leaving at the end of the month yesterday and she has scheduled regular fluid appointments for me, now that we know Prejeta is living up to it's diarrhea side effect for me. I'm going to miss her, she spent quite alot of time with me walking through every test result but I'm happy with my new oncologist too and hoping to see Tempus testing results soon.

  • Love4All
    Love4All Member Posts: 77
    edited June 20
    Options

    @fossf56 i shaved my hair yesterday because it was coming out in handfuls all over the house (and me!). I will say that even using the #2 blade guard that was recommended made my hair too short. The stubble acts like Velcro to my beanies, scarves and ball caps! I used the tape lint roller on my head several times yesterday, then got out the big guns… the packaging tape. Much stickier! 😂 Also, I was shocked at how cold I was in bed last night, even with my sleeping beanie. Had to put on sweatpants!

    @justsnapd8 Glad to hear you got your first treatment under your belt! I know it must be hard getting comfortable in someone else’s house, but I’m sure you’ll be glad you have the help and the company of your sister. I keep a little notepad and pen next to my meds and write down what time I need to take each one. Then I put a check mark after I take it (changing the time on my notes if I end up taking it later than I planned). I also kept track of how much water I was drinking to make sure I got at least two liters every day. Wishing you minimal side effects and sending love ❤️

  • Love4All
    Love4All Member Posts: 77
    edited June 20
    Options

    Some super cute ways to wear a head scarf ❤️ Also, head scarves look great with a bold lip 💋

  • fossf56
    fossf56 Member Posts: 32
    Options

    @Love4All this is great. I thought I might wait until after chemo on Monday to shave it off, but my head is tingling this morning so it might be coming off tonight. My 14 year old is adamant that he is also shaving his hair when I do mine so that I am not alone.

  • sarahjunefox
    sarahjunefox Member Posts: 50
    Options

    Cute video! Not bad for a first try??

    You can also see my weird fake eyelashes as well which are currently freaking my son out. He keeps asking 'why are they curly though?' 😂

  • jen987
    jen987 Member Posts: 14
    Options

    for those of you suffering from headaches, are you getting Zofran? I had terrible headaches with that so now I get Emend in my infusions for nausea and take Compazine at home as needed. You might want to check with your oncologist.

  • justsnapd8
    justsnapd8 Member Posts: 59
    Options

    @Love4All thanks for sharing that video, it will prove helpful when I need it as I'm planning on scarves and hats as opposed to wigs.

    @sarahjunefox that scarf is totally cute on you!

    @jlhmom75 I'm glad the party went well! I know your whipped and you no doubt outdid yourself. I don't have any children, but I know mom's tend to do whatever it takes when it comes to their kids. Hopefully you can get some good rest now.

  • moderators
    moderators Posts: 8,290
    Options

    @sarahjunefox LOVE that scarf!

  • Love4All
    Love4All Member Posts: 77
    Options

    My first outing with no hair! I ended up using a scarf I already had in my closet because the ones I ordered were too small to tie in cute knots. Oh well, live and learn!

  • Love4All
    Love4All Member Posts: 77
    edited July 1
    Options

    When I got home, I retied it a little looser and it’s actually very comfortable. It’s a fairly sheer material, so feels very lightweight. The stubble from shaving my head keeps the scarf from sliding around my head, too 😂

  • Love4All
    Love4All Member Posts: 77
    Options

    @sarahjunefox Your eyelashes DO NOT look weird! You look beautiful!! 😍

  • Love4All
    Love4All Member Posts: 77
    edited June 20
    Options

    @jen987 I was given Aloxi during my infusion for nausea, and they gave me prescriptions for both zofran and Phenergan to take at home. They warned me that zofran can cause headaches and the Phenergan causes drowsiness, so I took 1/2 a zofran every six hours during the day (per their instruction) and a Phenergan at night. I’d rather have a headache than nausea! I only needed the anti nausea drugs for about three days, then I was fine. The headache lasted another week after I stopped the zofran. I stayed very well hydrated and did not have an issue with diarrhea (except the day after chemo, but Imodium took care of that in one dose).

    My headache could’ve been from sinus pressure, too, because the chemo sent my allergic sinus issues off the charts for about two weeks (completely dried them out into crusty, cracked, and bloody scabs, lots of thick nasal drainage, etc). It. Was. Gross! I used Aquaphor a couple times a day on q-tips and swirled them up each nostril (a la Covid 19 testing) which helped with the cracking. I’ve taken a Zyrtec every day for my allergies for at least ten years, but switched to Claritin because of the Neulasta shot. The doctor thought I had a sinus infection and put me on antibiotics. They didn’t help at all. I really think it was just a result of my already effed up sinuses reacting to one of the chemo drugs. Guess I’ll never know!

  • Love4All
    Love4All Member Posts: 77
    edited June 20
    Options

    FYI, here is my head after my hubby shaved it yesterday. He didn’t get it very even, but who cares?! It’s gonna just keep falling out. Like I said earlier, I wish I had left it a little bit longer so the stubble isn’t so rough against my head scarves and beanies. I feel like an older, less cool Sinead O’Connor who was one of my adolescent heroes 😂👩🏻‍🦲🤘and I still adore to this day R.I.P.