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Starting Chemo December 2021

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245

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  • Goldengirl1
    Goldengirl1 Member Posts: 8
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    I'm new to this so hope I am posting correctly. I was diagnosed in September 2021. Biopsy showed positive invasive lobular cancer in left breast. Lymph node biopsy was also positive. Had double mastectomy and lymph node dissection in October. I had 13 out of 15 lymph nodes positive. Chemo treatment is with TC regimen, just completed 1st treatment last week. Still having stomach issues and severe headaches. I was treated for early stage breast cancer in 2006. I had a lumpectomy followed by AC chemotherapy and 6 weeks of radiation therapy. I can no longer have Adryamiacin. I thought this treatment, TC-: Taxotere and Cyclophosphamide would be easier. The headaches are the hardest to deal with. I had Nulasta on pro the day after. Anyone else having really bad headaches?

  • LillianASurvivor
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    hello,

    I’ve entered the breast cancer world in the last few weeks. I’m a nearly 4 year ovarian cancer survivor & can barely believe I’m starting a new round of chemo in a few days. How delightful to find this tread! I’m preparing myself mentally for what is coming. Chemo was hard the last time around. I expect this course will follow a similar path. My first session is December 30. Hopefully, I’ll end the year feeling strong and determined.

    I look forward to getting to know you all better. It’s good to be facing this challenge with a group of fellow travelers

  • moderators
    moderators Posts: 8,097
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    LillianASurvivor, we're so sorry you've joined us, but glad you found this group to help accompany you along what you need to go through. We're al here for you! Please reach out with questions.


  • Kayce234
    Kayce234 Member Posts: 87
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    Day 6 since my treatment. Since Christmas Eve its been tough. Im mostly having mouth issues. Hurts so bad to swallow, ny tongue is gross and I can't taste anything. No metallic taste so that's goid. My head is killing me. Only thing that seems to help is hit showers. Had whole body ache for a few days but that's gotten better.

  • Kayce234
    Kayce234 Member Posts: 87
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    goldengrl i have the headache, it's horrible. My teeth hurt from it

  • Goldengirl1
    Goldengirl1 Member Posts: 8
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    Kayce234- my headaches have finally went away, thank goodness. Yesterday I was feeling so much better. I even ate a regular meal for dinner. (Turkey and the fixins). For the last week eating has been a struggle. I couldn't even stand the smell of food. My mouth is still bad. Feels like I drank scalding hot coffee. Using baking soda and water to rinse throughout the day. Does anyone know if the SE's get easier or worse with each treatment?

  • mugsy
    mugsy Member Posts: 12
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    Lillian - Thank you for posting with us here. Sorry you are "in the wars" again but we'll get through together.

    Kayce234 - Sorry to hear you've been hit with the mouth troubles. Hope they are improving for you. I had the same first round of TC. Thrush-like tongue in the morning and some sores developing. But oddly enough, mouth is not nearly as bad this round for whatever reason. I'm Day 6 today...

    Goldengirl1 - I am Day 6 of Round 2, and my symptoms changed a bit. Wouldn't say things were worse. No fever, mouth issues this time like Round 1. But I do have a bit of neuropathy happening in my fingers and the bone pain was much worse. Chemo is cumulative, so symptoms can progress but everyone is different. I don't think it will get easier, but you will have the advantage of knowing what to expect and how to tackle your side effects.

    Blinx - Know you are starting in a couple of days. Hope it goes really well for you, and that you get your schedule and know what your scheduled chemos will be. Finally!

    Hope everybody is hanging in there. I think of you all. REMAIN FEARLESS!!

  • tmh0921
    tmh0921 Member Posts: 518
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    Hi all,

    Popping in from the September 2019 group. I noticed several of you having aches from the neulasta (or other similar drug). In case your oncologist or oncology nurses haven’t mentioned it to you, take a Claritin the day before chemo, the day of chemo and for several days after chemo and the neulasta. It really helps with the bone pain it causes…. Make sure to get plain Claritin (or the generic), not the Claritin D that has the decongestant.


    Hugs to you all, this take really will be over before you know it and brighter days are ahead.

    Tracy

  • Blinx
    Blinx Member Posts: 82
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    Reporting back after my first day of chemo today, Dec. 29. It was a LONNNGG day. First, I had a 6:30 AM brain MRI at the hospital. WAY too early for me, but glad it's done and results are all negative! Then to the cancer center for treatment. I was there for 6 hours, mostly due to insurance issues regarding my Neulasta prescription. It was approved for home injection, but I did not get the delivery. The staff was on the phone forever trying to straighten it out. I was given the choice of postponing the chemo another week, or getting the chemo without the Neulasta, necessitating additional interim bloodwork.

    I opted to get the chemo. It had already been delayed 8 days and I just keep thinking about the giant tumor that needs to be blasted with some strong drugs NOW, so I went ahead with it: AC (Adriamycin/cyclophosphamide), plus Decadron (dexamethasone) and Emend. Instructions to be super careful about hand washing, high fever, staying away from crowds... pretty much what I've been doing for COVID. I'll get my next treatment in 3 weeks instead of 2. I feel fine today, (Wednesday) but think that it will hit me on Friday? Saturday? I'll keep you posted! They told me I might get a surge of energy from the Decadron (yeah!) along with sleep problems (boo!).

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi all. - I hope this finds everyone well and having had a good Christmas. I am on day two after my second infusion. The day went smoothly as it could. I stopped at chickfila to get ice before going to the treatment center. They have the best ice to chew on! My hair really started falling out last week. My husband had cut it short the week before, but I had to buzz it all the way down. I couldn't stand It! It's definitely weird without hair, but I still have my eyebrows and that's really all I'm worried about, lol. It's beanie season so I can get away with wearing a hat but when the time comes for me to start drawing on eyebrows, that's going to be a challenge! I'm going to share this with everyone because we all need a laugh- I didn't want to be the sickly looking cancer patient for my second round so I put on self tanner, including the shaved parts of my head. (it was long on top). It looked GREAT! but...... when we shaved my hair all the way down the night before treatment.... I had a WHITE ring on the top of my head where the longer hair was! I looked like Dr. Phil! it was good for a chuckle. But, so far this round I've noticed I'm a lot more fatigued and stomach issues that I didn't have before- more queasiness and diarrhea. I'm still eating all things cheesy. That seems to be the most tolerable. My wonderful sister sent me a GALLON water bottle for Christmas, so I've been able to stay super hydrated.

    Lillian- welcome to the December starts. I hope today went smoothly for you. Sorry you are here, but happy to be able to be there for you as you go thorough this journey.

    Kayce- hot showers/baths are the best! I end up taking at least two a day, one for the ick(I swear I'm just sweating out the chemo the first 48 hours) and one to help soothe the joint pain. The mouth issues are not fun. It helped me to eat cold fruit as it soothed the inflammation. Watermelon, strawberries, cantaloupe- and the taste was not too offensive. I also developed a little thrush after the first round and the PA called in a mouthwash that cleared it right up. After using that, the issues went away. After the second round, I have so far not had any mouth issues.(fingers crossed).

    Blinx- it seems after the steroids (decadron) end, there is a bit of a crash. For me, I was infused on Tuesday and crashed on Friday. But it is a blessing to be able to sleep. If you do have sleep problems, mention to you team. As they say "there is something for every side effect"

    Mugsy- The bone pain eventually got better after a week. I'm only on day two after round two but it doesn't seem as bad as last time, not yet at least. I'm taking Claritin as Tracy mentioned, but my PA said it doesn't work for everyone. I have a feeling the Lupron shot I got with the first round may have contributed to some of the pain. I will find out next week when I go to get my next injection of Lupron. I hope that your bone pain has eased up. It did help me to take epsom salt baths, Dr. Teals brand has some good smelling ones. For the neuropathy, did your MO recommend B12? I know that's one of the things they check with my lab work each week to see if I need to supplement specifically for neuropathy.

    I wish you all the best as we move through treatment and the into the new year! I hope the new year brings you all unmeasurable blessings and happiness. Hang in there everyone.

  • Blinx
    Blinx Member Posts: 82
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    Happy New Year All! Hope things are going well. I started out the morning (3 days after first infusion) very light headed and slightly nauseous. Took an Rx tablet for nausea. Ended up throwing up anyway and felt MUCH better. Had my coffee and breakfast bar as usual, no problems.

    As the days progress, I'm getting more organized. I downloaded some apps to help me keep track of things. Hydro Coach Pro keeps me hydrated with reminders and tracks my fluid intake. Love that it is fully customizable. Another app tracks my temperature. Mine is usually WAY below normal but I want to keep on top of any fevers.

    Otherwise, I'm just taking things very easy. I don't think I got that energy surge from Decadron. Maybe next time?

  • nikko1963
    nikko1963 Member Posts: 7
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    Happy New Year to all! These threads are so helpful and I want to thank you all for your insights. Just wanted to chime in regarding my first experience with chemotherapy. Like everyone says - side effects are so individual.

    I was diagnosed two days before Thanksgiving. Got to the MO and BO by November 30, got multiple tests done in a hurry, and left for a 2 week trip to the UK on December 3, 2021. Returned to the US on December 17, Breast MRI on the 20th, port placement the 22nd and Chemo on the 23rd. Its been quite a month! Anyway, my first day of chemotherapy was long but uneventful. I started out really constipated due to the steroids and I think - stress. I felt fine going home, just tired. Friday and Saturday were all about fatigue and brain fog. Lots and lots of naps! We had a nice Christmas with my mom and her friend and eating was actually good.

    I hit the wall on Sunday. Fatigue, brain fog, bad constipation, stomach pain, bone pain, heart palpitations and body aches. UGH! Basically, it was like having the flu. On the up side - no nausea! Food was not appetizing, and I really got tired of taking Tylenol which does nothing for me. I rarely left the couch and relished being waited on. However, having to sit for long periods of time is not helpful to already sore joints and muscles. The constipation resolved with medication, and I went to the other extreme.

    This lasted from about Sunday through Wednesday. Thursday was much better (got a workout in and had an outing to buy a lovely wig) and by Friday I felt like myself and returned to my regular activities. Right now, many foods taste like pepper. It's so weird. So, I'm sticking with the bland foods which does include ice cream. Ice cream is one thing that tasted good while I was feeling the worst.

    I'm relieved to have gotten through the 1st infusion. I have treatment every three weeks, so I am hoping to get two weeks of productivity, both personally and professionally. We will see what happens. I understand that chemo is cumulative so we will just take it one day at a time.

    Thanks again to all of you who create and post to these threads. Its wonderful to know we are not alone and every piece of new information from each of you is helpful. Stay safe everyone!!

  • Kayce234
    Kayce234 Member Posts: 87
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    Happy New Year to all! May 2022 be an amazing year for all of us. I actually woke up this morning feeling like a human again, guess 11 days of feeling like crap isn't too bad and next round isn't until January 11th!



  • Kayce234
    Kayce234 Member Posts: 87
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    So my hair just started falling out. I think I've been as prepared as anyone could be but still was a huge shock. I was sitting on couch with hubby and ran my hand thru my hair like I always do and a handful if hair came out. I think tomorrow we are going to shave it off. This is all so surreal....

  • Goldengirl1
    Goldengirl1 Member Posts: 8
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    Kayce- same here with the hair. Mine started coming out a few days ago. We're about 4 days apart. I ordered a new set of hair clippers but it won't be here till Tuesday. Probably just use a bandanna to catch the hair until then. My hubby had a cold last week. Even thou we stayed away from each other and disinfected as much as possible I ended up getting it. Mostly a terrible cough. (We are both fully vaccinated so hopefully it's not covid.) Catching anything during this time is scary. Hopefully it won't last long so I can have a little time to feel good before the next treatment. My second treatment is Friday, January 7th. I will post again later. Hope everyone is doing good and has a great week!

  • Kayce234
    Kayce234 Member Posts: 87
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    Goldengirl. Funny our timing is almost exactly the same. My next treatment is the 11th. I cut all my boys hair..including hubby so I have clippers. We are shaving today. All my boys and my mom who lives with us are going to do it for me. One of the boys girlfriends is here from NY so she is going to photograph for me. Was going to have a fri6whos a photographer come but thought we'd just do it as a family.

    Sorry you got hubbies cold, mine was sick yesterday and hoping not to catch it

  • Ratched28
    Ratched28 Member Posts: 7
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    Hello everyone,

    This is my first post. It's not ex social group I was hoping to join for the new year, but I'm so thankful that this group exists. I was just diagnosed a couple weeks ago, and the plan is to start chemo in the next week or so. I have my chemo teaching tomorrow, and port placement Thursday. I'm having neoadjuvant chemo due to the HER2 positive pathology. I've been reading a lot of posts throughout the site, and it seems the port placement is very painful after the fact? Also sounds like hair loss happens very quickly. I'm curious if anyone was able to continue working during treatment? I've already put in for a medical leave, but hoping I will be able to return quickly. I'm having 5 months of TCHP before lumpectomy. TIA for any advice. I send positive thoughts for all of you going through this.

  • Blinx
    Blinx Member Posts: 82
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    Hi Ratched -- Welcome! I'm new here myself. My first chemo was was last week when my employer is closed. I'm wondering about the work thing as well. So far I've had 2 down days, but then today woke up and felt perfectly fine! Took the dog for a walk, got a good salad + chicken for lunch. Yesterday I could barely eat anything. Its a wild ride for sure! I expect to continue working from home, taking time off as needed. As it is, I must use up all personal/vacation days before any kind of leave would start. I'll see how things go.

    As for hair loss, I think it depends on which treatment you are on. I was told that the AC regimen is like clockwork at 13 or so days from the first treatment. Your experience may or may not be different.

    Kayce -- What a nice way to make the experience meaningful! I tried to find a haircut in the stores but only came up with a showercap. I'll start sleeping in that when the first bits start to fall out.

    Goldengirl -- Hope you and hubby are through the worst of it!

  • Blinx
    Blinx Member Posts: 82
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    Hi Ratched -- Forgot to mention about port placement. It was a much bigger deal than I had imagined. For me, recovery was worse than a lumpectomy! I remember them pushing down SO hard, but didn't know why, and I had large bruises for more than a week.

    I had to get a brain MRI the morning of my first treatment and thought, why not use the port? The RN tried and said it was only the 3rd time in 20 years she couldn't get it to work! I let the nurses know that at the infusion, and they also had trouble, but knew what to do. I think the standard port needle was .75" and they switched to a 1" -- worked perfectly (maybe I had swelling or thick skin?) Ever since then it hardly hurt at all, and I've been able to sleep on that side.

    I'm hoping it was just the extra pressure in the cath lab to test it that made it hurt and you don't go through that. Good luck!

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi Ratched - I have to agree with Blinx- the port placement was more uncomfortable for me than the lumpectomy. I had a pretty bad pain in my throat after that made it difficult to swallow. Now, I don't even notice it unless my dog jumps on me, lol. As far as working through treatment, I've been able to minimize days off since I work from home. It's also a slow time of year for my area, so no major projects to focus on which has helped. After round one, I took one full day off and then a few hours the following week when I just needed to nap. Round two went about the same, my greatest fatigue day was 3 days after treatment and did not work that day. Today, back to work like usual. This is my experience, yours will be different of course, but continuing to work is doable. Just make sure to rest when your body says rest.
  • booklover12
    booklover12 Member Posts: 5
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    I’m getting my port tomorrow and I’m really anxious! More anxious than I am about starting chemo the next day. This whole experience has been so overwhelming! I have lots of support from my husband and the rest of my family but sometimes I just feel like I’m numb. I went out wig shopping with my sister yesterday and I just felt really sad. Any tips on staying more positive?

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi Booklover. Don't be anxious about the port, you got this! I know some of our experiences make it sound bad, but for me, the procedure itself was fine, no issues whatsoever. The area was just uncomfortable for a few days but tolerable. I told my nurse about the pain I had in the throat after the port placement and she said that was a new one for her, she had never heard of anyone with that issue, so it was probably just me and my dumb luck. As far as being positive, it's tough sometimes. being diagnosed sucks, there's a lot of why me? and uncertainty. Whatever you do, don't bottle it up. It's ok to be sad, angry, and to even feel grief about losing the life "before cancer" Acknowledge it and move on. Personally, I try to focus on all the little small things that are positive and they eventually add up to a lot of good. I started a gratitude journal to reflect on those good things and accomplishments. I also try to reframe things- for example, when I shaved the last bit of my hair, I cried. (I'm also completely terrified of my first work zoom call tomorrow with no hair) but I've always wanted to try shorter hair cuts, just never had the guts to do it. Now, when my hair starts growing back out, I'm excited to try so many different styles and have started a Pinterest board to look forward to what's going to happen AFTER chemo. This community and my survivor friends have so many amazing stories that give me hope and I try to focus on that. I've also kept professional help in mind. If things ever get too tough and I know I can't manage, that is where I will go.

    I wish you the best tomorrow and on your chemo day. Stay strong!
  • Bonniebleu
    Bonniebleu Member Posts: 33
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    I'm new here, due to a reoccurrence after DMX, had my first adrimycin/cytoxin on Dec 23. Next one this Thursday. All in all, I'm hanging in there. The steroids were a surprise, don't like that feeling at all. The Nuelasta shot gave me some pain in my lower back but Claritin seemed to help. I've lost very little hair.

    Have four rounds of this, then Taxol for 3 mos.

    We had rented a beach home in Fla for a family vacation before I was diagnosed. Its right after my fourth treatment. It's Feb 5-12. The Dr. said don't fly, so we'll be driving. Now this Omicron has me really worried.

    Has anyone traveled during chemo? Any tips?

    Sending wishes for healing to everyone!!



  • sun-shine
    sun-shine Member Posts: 30
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    Hello Everyone,

    Happy New Year! May 2022 be an amazing year for all of us!

    I am on the 7th day of my second chemo. Every cycle I need to inject Zarxio for 5 days for boosting my white blood cells. I don't like doing injection by myself!

    Just like the last round, I had some uncomfortable days started on the 3rd day. My side effects included body aches, fatigue, minor diarrhea, heavy leg feelings, fast heart speed etc. Fortunately, all these side effects are not so strong. Overall, the chemo treatment is not as bad as I worried / thought. It's doable. I had some good normal days before the second infusion started. We went to a small town called Foresthill (close to Sacramento) to take some beautiful snow pictures.

    My hair started shedding on 16th days even through I used Penguin cold caps. I will keep using the caps for the next two treatments. I still hope I will be able to keep some hairs!

    Currently, the Omicron virus is really scary and worrisome. I always wear double layers of surgical masks if I have to go anywhere.

    Sisters, stay safe! Stay strong!

  • Goldengirl1
    Goldengirl1 Member Posts: 8
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    Hello everyone! Hope everyone is doing good. In my last post I mentioned catching a cold. I started getting worried so I did get a covid test. Thankfully it was negative! I knew i would need a negative test before my next appointment. I was supposed to have my second treatment yesterday but the cancer center called at 8:30 pm Thursday night to let me know they were going to be closed because of a snowstorm. They will be calling me Monday to reschedule. So now I have to deal with the anticipation and dread again! Hopefully it won't take long to reschedule. One good thing is that it gives me an opportunity to get over this cold. I am feeling much better! My hair is still coming out. Hubby cut it for me to about an inch or less. My scalp is so sore and tender. Never thought I would say this but I'll be glad when it's all gone!.

    Looks like several of you recently had a treatment. Hope everyone did ok. It's so comforting to be able to hear others experiences and share are concerns and our accomplishments with each other. Stay safe!


  • Kayce234
    Kayce234 Member Posts: 87
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    goldengrl my second was scheduled for Tuesday but I just tested positive fir Covid 😔

  • inthesage
    inthesage Member Posts: 13
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    Hi, hope I can join this group as I'm starting chemo on Jan. 18. Next week I have my port put in. I've been lurking reading everyone's experiences and tips as well. My doc gives the Neulasta patch as routine, which makes me nervous as I see bone pain is a big complaint.

    I guess my first question has to do with eyebrow/eyelash loss. A friend who went through a different type of cancer and chemo gave me eyebrow pads that you freeze to prevent eyebrow/eyelash loss. I will be getting 4 infusions over 3 months of cyclophosphamide and docetaxel, My doctor says this 4 cycle protocol doesn't cause eyebrow loss, just scalp hair loss (I just plan to deal with a bald head despite the snow). Does anyone whose been through the DC cycle have input for me? I'd rather avoid using eye pads if they won't do any good. Cuz then I'll be able to read at least.

  • Kayce234
    Kayce234 Member Posts: 87
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    Welcome inthesage. So far my eyebrows and lashes are holding strong. I've only had 1 treatment but my hair is gone. I also haven't had horrible bone pain from Neulesta, just aching like from the flu. I take Claritin daily which has been said to help. Good luck with port placement. I will say that was harder than expected but after a few days was fine

  • booklover12
    booklover12 Member Posts: 5
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    I need some advice. I had a port put in on Wednesday, 1/5/22 and it's still very painful. It also feels swollen. I started chemo (Taxotere and Cytoxan) on Thursday. Friday night I started feeling terrible. My head and body aches like I have the flu. I'm a little bit nauseous. I've taken prochlorperazine for nausea and it seems to have helped. I was also prescribed hydrocodone-acetamin for after the port placement. What would help relieve the body aches besides the hydrocodone? Would Advil help?

  • Morgana00
    Morgana00 Member Posts: 9
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    Hi Booklover- Eventually the swelling on the port will go down and it will be much more comfortable. As far as the Neulasta pain, as others have mentioned, Claritin seems to help some people with the pain. it's typically taken the day before the infusion and then for 5 days after. Despite taking Claritin my first round, I had excruciating bone pain and just took Tylenol since the nurse told me to avoid NSAIDs. In my next follow up with the MO, I asked her about taking NSAIDs like Advil and she said it was fine. Advil always works better for me and that's why I wanted the okay to take it. I would just check with your MO that it's ok. My second round I had minimal bone pain, it was flu like body aches and manageable with Advil. Other things that seem to help are epsom salt baths and, I know this is weird, pressure. I would have my husband squeeze my legs and that temporarily helped.

    Hi Inthesage- I'm on a 21 day TC cycle and have completed 2 rounds, my third will be in 10 days. My eyebrows and eyelashes are holding on strong. My hair started significantly shedding shortly before my second round so I buzzed it all the way off. I still have fuzzy hair on my arms and most of my body. The hair on my legs, thank goodness, is not growing back after being shaved. If you are in a cold part of the country, I recommend a good soft hat to sleep in. my head gets so cold at night! Amazon has 4 packs of cotton beanies that work great.

    Kayce- I'm so sorry to hear you have tested positive for COVID. I hope it is mild for you. Stay strong.