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Starting Chemo August 2023

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24

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  • katg
    katg Member Posts: 209
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    headcovers.com. I was told 2 weeks for my hair to be gone. Besides some wisps, i lost it all then. 2 weeks in to a total of 12 of 2 chemos, once per week. My sister just had her third chemo, and she has not let me see her. She may be wearing a baseball cap that has hair. Really, i think if that is the way to go for her. Great. I got my treatments in 2021, weaning off Covid at COH. I got to do lots of zoom.

    I wanted to say I started treatment in August of 2021 and did not have my breast and tumor removed until Feb. 13 rounds of chemo cut my tumor in half. A 5.4 to 2.7 or so. Not gone, but i must say I did not touch myself a whole lot. I found that made me feel better.

    All of us who have walked through this are here for you. Behind the scenes. Let us know if we can be helpful in any way.

  • fireflyhill
    fireflyhill Member Posts: 28
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    Hi ladies.

    My second round knocked me down much harder than the first. I have been mostly in bed since Wed. I Just couldn't get up, bad headache, eyes hurt and gooped up terribly, all over body hurt. I felt totally beat up, but I am finally starting to feel a little better now and of course it is 2 AM!!! I sure hope I can go back to sleep shortly. I need tomorrow to be a better day and I need to get some walking in, some movement, try to shake the cobwebs out. The weather has been gorgeous and I feel like I have been robbed of 4 beautiful days…..well, I guess I have been, but it is with a goal of having more days in the future that I might not have if I don't fight this cancer.

    cindylou-I am glad you like your haircut. It is wonderful that you have a wig you like and your salon was able to customize it for you. I have not had such positive wig experiences…but I live very rural and have limited availability. Online shopping less than optimal for me. I would suggest to have some other head covers available. My scalp was so sore I could not wear my wig to chemo this week. I was glad I did have some other options that looked nice. Prior to actually losing my hair, tho, I swore I would not be going out without a wig….but my scalp was so sore that was not possible. I was lucky I was not caught completely without something pretty to wear on my balding head.

    rugged-11, so glad to hear from you. Im glad Dr will be tweaking your meds, that should help you going forward.

    Hope everyone has a lovely day tomorrow.

  • wildflower75
    wildflower75 Member Posts: 5
    edited September 2023
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    This is my first time posting but I have been lurking in the shadows and finding comfort in these posts so I decided to reach out. I live in Canada and was diagnosed May 9, a day after my 48th bday. I had a unilateral (lefty) mastectomy June 23 and started chemo late Aug, 2023. I have ILC so my cancer got to almost 6 cm before it was detected. I also have grade 3 type. Not sure my stage, it's in my nodes but we don't know to what extent. My chemo protocol is to begin with 12 weekly Taxol rounds before 2 rounds AC. I have had two treatments. So far, I am tolerating the medicine well. It helps me to stay busy so have been organizing the house. haha. I think I have some good anti-nausea meds. I continue to go to my spin class, lift weights a couple days a week and walk everyday. I still try to go to work twice a week and see clients since I am self employed. I try to keep things "normal" for my girls ages 10 and 12. I still have my hair and I'm not quite sure when I will lose it. I am on a strict keto diet, which I think is helping my side effects, but who actually knows. Perhaps it's just my way to get some control back. I'm looking forward to following you all and connecting as we go through this together.

  • fireflyhill
    fireflyhill Member Posts: 28
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    Welcome wildflower75! I agree that there is much comfort to be found here and a specific kind of support we may not be able to get from our family. Sounds like you are doing fairly well with your chemo treatments. I so admire your being able to continue your activities: work, family, and exercise. I also find it helpful to stay busy, at least when I can. I will caution you that fatigue may show up on your doorstep. If so, do not be too hard on yourself and allow yourself to rest.

    I am thankful that I could get up and about more today. After being mostly in bed for couple days, I took a small walk outside. Also, I competed a 10 min BC Lymph (cancer rehab PT) video. I have noticed my surgery breast/side/arm seems much more sore, numb, and irritated since starting chemo, especially first week or so after infusion. I do not know if this is due to the chemo drugs or less activity but I do not want to go backwards on my arm mobility or give any lymph problems a chance to blossom. A small feat, 10 min upper workout, but I'm counting it a WIN WIN for me today.

    rugger-11, you keep that hair in your bag until you are ready to let it go. Whatever helps you mourn that loss.

    Cheers

  • wildflower75
    wildflower75 Member Posts: 5
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    Fireflyhill, yes, thanks, that makes a lot of sense to allow myself to rest. I also wonder if the steroids are ramping me up and if I am going to crash…hard. I will ask my oncologist about that. Good job on the walk and the 10 minute upper workout. We have to count all the wins.

  • suckitbc
    suckitbc Member Posts: 19
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    Hello ladies! It’s so great that even though you guys are still experiencing crappy side effects, etc. everyone seems to be staying pretty positive and pushing through.

    Welcome wallflower-sorry for your shitty bday present! I’m impressed you’re doing spin class, weight lifting, working etc. I’m 47 but feel 87 these last few wks!

    cindylou & those getting neoadjuvant tx (begore surgery)-I would feel the same as you regarding wanting the tumor out already. I guess the good thing is that it continues to get monitored and they can see if it’s shrinking. I had my surgery first (adjuvant) both times and once that’s done there’s no more scans to give peace of mind. I think both options suck!

    firefly-glad you’re on the upswing!

    rugger-I’m getting nervous about round 2 this wk-what about you?

    I did end up seeing my oncologist last wk and was positive he’d tweak my meds since I had a rough first round, but he didn’t change a thing. He and one of the chemo nurses he consulted were puzzled that in addition to feeling virus-like side effects on days 3-5 (which was expected), to be even worse on days 8-10—vomiting, diarrhea, migraine, etc, he thinks might be a fluke or I might’ve picked up a virus somehow. I know whatever it was I’ve never experienced anything like it before. It was awful and I know if it happens again for my 2nd round I don’t know how I’m gonna get through it. Hoping it really was a fluke, but frustrating! Anyone have an unusual reaction/response/unexpected experience with their chemo?

    Also, 10 yrs ago I lost all my hair and was fine with it-it did make life easier. But this time I was told my particular chemo would most likely only result in hair thinning not total hair loss. The only reason I care now is because I am not telling my two children (ages 12 & 14) about my dx, but yesterday a lot of hair came out in the shower. If it all falls out I obviously won’t be able to hide it and that will be so upsetting to me. Anyone else keeping their diagnosis from their kids/loved ones?

    Thanks for letting me vent!

  • cindylou416
    cindylou416 Member Posts: 33
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    Hi all!

    just wanted to get your input here, I am at the infusion appointment right now and found out that my white blood count is 1100. They said I am high enough to get my treatment of tax ol and Carbo today but if I were under 1000 they would send me home. the nurse mentioned that they might give me some injections that I take at home that I can get from my local pharmacy.?? That should cause my bone marrow to make more white blood cells? today is my third treatment. I’m wondering if anyone has experienced this and what the remedy is and is it effective? Thank you !

    Cindy

  • suckitbc
    suckitbc Member Posts: 19
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    Hi Cindy

    Is the injection youre talking about Neulasta?

  • cindylou416
    cindylou416 Member Posts: 33
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    Yes i believe so

  • suckitbc
    suckitbc Member Posts: 19
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    cindy-I get the Neulasta shot the day after each treatment to keep my wbc up. I also had it 10 yrs ago too. The most common side effect is bone pain, but they discovered that taking the allergy medicine Claritin somehow combats the bone pain. This time for my first round I took the Claritin the night before the Neulasta shot and for the following 5 days. Luckily I did not have bone pain like I did 10 yrs ago. Since Claritin is a pretty benign drug I think it’s definitely worth it to try. I get my Neulasta administered at my onco’s office, but I’ve heard of the kind too where you do it yourself at home. The Neulasta really is effective in keeping your wbc up.

    Hope this helped!

  • cindylou416
    cindylou416 Member Posts: 33
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    Suckitbc - thank you for sharing your experience, it really helps to lessen my anxiety knowing that you have also done this before and it’s probably fairly common practice. It’s anxiety provoking when you’re sitting in the chair and your doctor is not there and you don’t know what’s going to happen to your body over the next week. My white blood count went from 5000 to 3400 to 1100 and they said I met the criteria yesterday to treat me. So they did. They are planning to wait and look at my bloodwork next week and most likely give me the Neulasta next Tuesday. I don’t understand why they didn’t just give it to me yesterday but I’m sure there’s a protocol I’m gonna call my doctor to discuss.

    Cindy❤️

  • rugger11
    rugger11 Member Posts: 9
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    wildflower - That's great you are able to keep up with your daily routine!

    firefly - I'm glad you're starting to feel better!

    suckitbc - I'm very nervous about round 2! I've been trying to really stay hydrated and make sure I'm eating well going into it. Hopefully it helps this round! When I was initially going through diagnosis I only told my husband. I ended up keeping things short when talking to my parents and my friends, because I knew I was hiding something from them. It took about 4 weeks to find out there was some invasive cancer as well (initial biopsy was DCIS). After that, I ended up telling my family and close friends. Once I told them, it felt like there was a huge weight lifted off of me. It's a heavy secret to bare on your own and to try to hide. My son is only 21 months old so he doesn't know what's going on, just that my level of activity with him fluctuates. He knows that mom has an "ouchie" (points to my port scar) and recognizes when I'm more tired. That being said, you do what makes you most comfortable and what works for your family!

    cindlylou - I also got the Neulasta after my first treatment with the plan to get it every time. I was instructed to take Claritin when I got home from my infusion and then daily for the next 5 days and I had no side effects, so I'm guessing that helped!

    I am a bit anxious going in to round two tomorrow. I have not been sleeping well the past 4-5 days, despite taking Lunesta. My son is in daycare and with the new school year starting I'm nervous about him getting sick and bringing it home to me. I'm hoping my WBC count doesn't tank this round, as it was good with the Neulasta last time. I'm praying the extra hydration and food intake helps with the side effects this round!

  • cindylou416
    cindylou416 Member Posts: 33
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    Rugger I totally hear you on the germ issue.

    My 17-year-old started his senior year this week, and my 25 year-old started his final semester in college. I am nervous about all of the germs coming home . I’ve asked them both to wash as soon as they come in the house and I’m isolating to my bedroom and my sunroom for now while my white blood count is low, I wear a double mask around the house and I sanitize regularly and wash my hands a lot. I feel like that should help keep things in check. It’s also allergy season so there’s a lot of coughing and sneezing everywhere I go which makes me crazy. Good luck tomorrow and tell me again how often do you get treatments and what are you getting?

    Cindy❤️

  • suckitbc
    suckitbc Member Posts: 19
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    Rugger-good luck tomorrow! You got this! And I hear you on the sleep issue, I thought we’re supposed to be tired! The steroids only last for for so long! I got round 2 today, it was a little easier than 1st round because I knew what to expect. The only issue i had was all of a sudden the infusion area on my wrist started burning and throbbing, but I called the nurse over and she slowed down the steroid med and it was instantly better. Lesson learned-don’t hesitate to tell the nurse when something doesn’t feel right!

    cindy-I don’t understand all the protocols either, but if they’re waiting until next wk then I guess they’re not too concerned? The germ thing is annoying, I’m sure my kids will be coming home with a plethora of germs! I’m pretty much going to start hibernating now and stay out of public places/crowds etc.

    Anyone get a wig online? I know there’s endless options and good ones that cost $1,000’s, but I’d rather spend that on a vacay when treatment is done! And my wig from 10yrs ago is awful lol! If anyone has recommendations I’d love to hear!

  • fireflyhill
    fireflyhill Member Posts: 28
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    Cindylou- I also have been receiving the WBC booster injection the day after my infusion. My med is Rolvedon which is a biosimilar to Neulasta. The drug stimulates your bone marrow to start producing more WBC…..but it doesn't happen overnight, it is a process. My team checks my blood exactly 1 week after the Rolvedon injection, which they said is actually the LOW point of a potential drop in ones WBC, before the marrow starts pumping out more WBC. They said they want to know how low it is at that point for each treatment cycle. Once the marrow gets revved up, the boosted production can be very high. Team even warned me if for some reason I had my blood checked(ie ER visit) and WBC was something crazy like 20,000…I needed to let ER know I had the injection. Also, it is my understanding that the injection is NOT given any more often than 21 days… My chemo schedule is every 3 weeks so works out easy but I do have to return to office for the injection. I would have liked the at home injector one but I figure it was an insurance issue. I don't know for sure but I THINK if one is on a weekly dose chemo schedule then they might still only give every 21 days?? Im sure your Dr will explain better. I also take the Claritan 24 hr dose, daily for at least a week or so to ward off bone pain. Im confident the injection is helping keep my WBC from totally crashing and so far I have not had much side effects from it.

    I hope this gets resolved for you ASAP.. and yes, we all are worring about the germs, whoosh, just so much to worry about. Helps a bit to remember though that WBC fight bacteria…..not virus, but really I do not want to pick up any virus either. No, no, no.

    Rugger-11 and suckitbc—sending all good vibes your way for a smooth treatment week. Hopefully it will go much better for both of you. Suckitbc maybe it was a virus fluke and this round will be more "normal". With hair loss, I think it might be very hard to continue to hide this from your children. Seems like sometimes the medical teams try to sugarcoat these side effects…I was told I MIGHT only have partial hair loss or thinning….Ha, well I'm 92% bald now, technically I still have SOME hair, so I guess it is hair thinning until its not. LOL! Other than my husband, I found it soooo hard to tell my other immediate family members and I did not tell them for several weeks. Even still, I have repeatedly demanded they not tell anyone. It just seems so personal. Like Rugger11 said though, might be a very heavy burden to carry and at age 12/14 the kids might start feeling the tension(figure out somethings wrong anyway). Sometimes its so hard to know what/how to protect the ones you love. I hate that you have to struggle with this.

    Hugs for all.❤️We got this!

  • rugger11
    rugger11 Member Posts: 9
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    Cindy - That's a good plan! I think I'm going to start masking around the house now. So far my WBC count has been good tho, so I'm hoping it keeps up for at least the next few rounds. I'm on TCHP once every 3 weeks for 6 cycles to start.

    suckitbc - Hope you're doing well after round 2! I went to a wig store that works especially with people undergoing chemo and people with alopecia and I got a real hair wig that cost $300. The owner also informed me that some insurances will cover some if not all of the cost of a wig (which I haven't looked into yet). Mayber try a google search to see if there's anyone in your area who caters to this population, as you may get better pricing.

    firefly - How are you doing since your treatment last week? Do you feel like your side effects are resolving now?

    Hope everyone is doing well and staying cool! We're in the middle of heat wave right now!

  • cindylou416
    cindylou416 Member Posts: 33
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    Hi everyone!

    welcome wildflower! Im so sorry about your birthday gift☹️. I was diagnosed 9 days after my 58th birthday. Got the call as soon as i arrived at a rented condo in Maine on my very first “hour” of my vacation. Are you also getting Carbo or just Taxol? I just had my 3rd round and feel pretty good if i take the Dexamethasone on the two days following trtmt. I totally agree with keeping busy. It definitely helps to distract from not feeling your best.

    suckitbc- I waited until I had a good grasp on the big picture regarding my diagnosis and treatment plan before I sat down and told my two boys. I kept things light and shared just enough so that they knew I could use their support and help around the house but at the same time not leaving them to worry a lot - I told them it’s very common and it’s treatable with medicines and everything is gonna work out ok. glad to hear round 2 is behind you. I hope it goes smoothly for you this week❤️ The infusion nurses are wonderful and take such good care of us. When I get to the station each Tuesday, I am always so thankful for such a soft, comfortable chair with a heated seat, my nurse Melinda, who is so kind and caring, and the bounty of snacks and beverages and goodies that they have available for us. They really try to make us comfortable and I appreciate that. I heard back from my doctor today, they are going to have me do my labs here in my hometown first thing Monday morning on a stat basis and then she will decide if I can still have my treatment on Tuesday, get my port installed on Tuesday and if I will need a Neulasta shot as well. Regarding the wigs, I went to a salon near my hometown that was actually listed in a reference guide that I got from Dana-Farber. They had a wig on the shelf that matched my hair perfectly so I bought that it was just about $400 and my insurance pays 80% reimbursement. I also bought a couple of bamboo head covers for sleeping or being out in the sun, since they are SPF 50 and I bought a hat that says dog mom on it and a hairpiece that you put on underneath a hat - tried to cover all my bases lol I like to be always ahead of the game and have a plan! Check out head covers.com

    Firefly-thank you for sharing the info about your injections. I am beginning to see it’s common practice for chemo patients to receive these injections throughout treatment. And if it keeps your white blood count up where it needs to be, then I’m happy with that so there’s less to worry about especially going into the fall and winter seasons. I’m interested to know about the chemo every three weeks. What medicine are you getting - Is it a stronger dose since it’s every three weeks - it seemed to knock u down pretty hard. I hope things will improve for you!

    Rugger - i hope everything went well for you today😊 and that your side effects will be minimal. Hydration i found to be very helpful overall. I’m definitely dealing with consistent constipation, I take Colace and Senna which are both natural laxatives. I was told if they don’t work to move up to MiraLAX so that may be on my agenda tomorrow we shall see. Please let me know if you have any tips on keeping things moving!

    we are definitely having a heatwave here in western Massachusetts. 90s all week, first week of school and they had early dismissal at 11 o’clock three days in a row! Hoping it breaks soon. I hope you all have a great weekend and take good care of yourselves

    Cindy❤️

  • fireflyhill
    fireflyhill Member Posts: 28
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    Good morning,

    Cindy- I am on Adriamycin("Red Devil") and Cytoxan, 4 rounds, every 3 weeks, then I will start Taxol 12 rounds, weekly dose, followed by radiation and hormonal therapy. My orginial chemo treatment plan was changed when I had a severe anaphylactic reaction to Taxotere so everything just keeps changing and keeping me guessing. In general, assuming total time and total dose are constant, then weekly doses are smaller amounts of medicine given more frequently over that same amount of total time and dose. So, side effects might be more slow to accumulate but the patient is also getting less time to recover between each dose. So yes, my infusion of AC is more dose dense on a 3 week schedule and did kick my butt last week. Keep in mind though , that if total time or total dose is different then a more frequent infusion could be more dose dense. I have noticed this with the AC protocols..I have noticed 2 common plans: every 3weeks for 4 rounds and every 2 weeks for 4 rounds……. so under that, assuming total dose is the same, time is different so the 2 week is actually MORE dose dense than the 3 week. Thank Goodness we do not have to treat ourselves! It is so confusing. I am very grateful that I have a Dr I trust. I hope everyone here trust their doctor and team to navigate this.

    Hope everyone is getting through the week and feeling stronger for the weekend! Another big disappointment for me… no grandchildren this weekend. My WBC was only 1700 with gran 970 , plus my son and granddaughter now have the crud my grandson has had for 3 weeks. Broke my heart, but I really don't need the crud.

    Wigs-I bought a decent one at a wig shop, $200-300, but wanted to have other options. Ordered 3 from Paula Young. The Paula Young branded one are inexpensive so I thought I'd try one to see. Ended up only keeping one of the wigs but it was only $60!!! and honestly, the $300 one doesn't look THAT much better. I think I might explore a few other online sources because I do not have access to local wig shops. Im not sure I could wear a wig for super long period of time. I sort'a feel like my head is in a cage when I put one on….like Hannibal Lector…YIKES!!

    Have a good weekend, LETS Party til Monday…HA HA don't we wish we could😍

  • wildflower75
    wildflower75 Member Posts: 5
    edited September 2023
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    Hi everyone, sorry I have been MIA.

    Cindy - I am just on the Taxol and then AC for two rounds with two weeks in between.

    I just finished my 3rd round and the cumulative effects are getting to me. I am having a strong reaction to the dex and experiencing some mild manic symptoms. I'm taking a good dose of Zopiclone but still not sleeping. Does anyone else notice this or is having impacts no emotional/mental health? I will talk to my oncologist on Monday about reducing my dose of dex without increasing the SE to the Taxol. It seems to be a tricky balance.

    Today my hair started to fall out. This is a very strange feeling. I just wondered how long you let your hair fall out before you shaved it or cut it short?

    In terms of wigs, I got something called a halo and then lots of cool hats. I tried on so many wigs and I just didn't feel like me. Firefly - I agree with your comments about wigs feeling like Hannibal Lector. Hilarious.

  • fireflyhill
    fireflyhill Member Posts: 28
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    Wildflower-I cut my very long hair to shoulder length before I started chemo, so when it started to fall out it still had some length to it. I thought I would buzz it off at some point but when it started falling out I decided not to. With my hair being longish, it was easy to gently pull the brush through it and get lots of hair out in a manageable wad so it didn't end up all over the house. I had read that if you buzz it then you have all those tiny little prickle hairs everywhere. Now I have a long mohawk with a mullet look at the bottom, as my sides are mostly bald. It is a horrific look. I keep thinking about cutting those long hairs shorter now but I haven't yet. Its so awful looking that I must wear a head cover but I like how some of the remaining bottom length of hair can hang down and looks like maybe I have hair. Im not sure if I will cut it or just wait for it to all fall out.

  • wildflower75
    wildflower75 Member Posts: 5
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    Firefly - That makes a lot of sense that if I shave it too soon there will be little prickle hairs everywhere. You sound like you have an interesting look. I hope you have pictures. I wonder if one day we can look back on this all and find the humour? Keep us posted what you decide to do with the remaining hair.

  • red_lioness
    red_lioness Member Posts: 9
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    Hello chemo queens,

    I have been absent, but really like to be able to check in and see how everyone is doing. On the days I have been feeling good, I want to pretend I don't have cancer and have avoided the forums.

    After 3 of the taxol, my hair has started shedding as of today. I have a lot of hair so I will see how long I can handle it before I shave it.

    As far as head coverings go:

    https://www.wigsandwishes.org/ Is a non profit providing wigs for breast cancer patients.

    https://styleesteemshop.com/ Gorgeous turbans designed and created by BC survivor.

    https://indiradeparis.com/en-us I have purchased some of these beauties to wear. Took a little to get them in the mail but they are pretty and easy to style.

    I am having other (minor) side effects after three weeks- sore mouth, itchy hands/feet/um other sensitive areas…, small signs of neuropathy. I started taking L glutamine to possibly help. This week I will try compression on hands and feet in addition to the icing during treatment. I am going to acupuncture 3x a week and am hoping that will help me through this.

    Wishing you all strength for this week and carrying you with me ❤️

    Sincerely,

    Betty

  • fireflyhill
    fireflyhill Member Posts: 28
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    How is everyone feeling this week? This group has become suddenly quiet?? Hopefully that means you are feeling pretty good and busy enjoying life as best you can.

    I started a Joy Jar the other day. This idea from Dr. Liz O'Riordan, breast surgeon and her BC journey. I had already tried to write down my thoughts but found that exhausting even though I normally like to write. So, I am going to try the Joy Jar to keep depression at bay. I am over 4 months into my BC journey and am starting to find it a bit more mentally challenging than I had hope. It is hard to explain and even harder to talk about. I even struggled a bit to explain the Joy Jar to my DH, but I did and after a day or so, I noticed he had put something in my jar for me. Even that little act lifted my spirits.

    You all are in my thoughts daily. 💕Stay Strong💪

  • red_lioness
    red_lioness Member Posts: 9
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    Fireflyhill, I Love the idea of a Joy Jar. I wholeheartedly agree with you, the mental challenge is so difficult day to day, up or down. It is bad enough dealing with all the physical aspects, but the mental game feels like its going to be going on for a long time. When I first was diagnosed, I talked with my Dad on the phone and said "I know for sure I will come out of this mentally stronger than going in." I sure hope that is the case.

    Today was my treatment day-I am feeling incredibly grumpy from the process. 4 weeks behind me but still feels like a mountain ahead. How are you doing this week?

    Thank you for sharing 🦋

  • cindylou416
    cindylou416 Member Posts: 33
    edited September 2023
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    Hi everyone, this week was a tough week

    Round number 2 was on Tuesday: Taxol, Carbo, and keytruda. Then Wednesday night, I started my Nivistym injections.

    Woke up Thursday morning feeling so exhausted to my core. I went back to bed until about 2 o’clock. I called my doctor, thinking maybe it was the Nivistym shots but she said no , its probably because this round I didn’t get any steroids.

    I will be glad when my white blood count goes back up so I can live life a little more normally and go to the grocery stores and pick out what I want. I’ve been avoiding people and stores for the most part right now because my count is so low.

    I bought a wig from wigs.com and it will be here today, so I’m looking forward to playing around with that(lol) I think today I even feel like walking a little and maybe doing yoga or a stretch. I am intrigued by the joy jar idea, and I’m going to look it up and see what that is about - sounds like a positive idea that I could incorporate into my world. We need all the positivity we can get.

    looking forward to the change in weather, and being able to open up the house and get fresh air in here and go for walks in the cooler temps.

    red lioness- one treatment at a time- don’t look too far ahead. Each one is a win in our books. We got this.💪

  • fireflyhill
    fireflyhill Member Posts: 28
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    Hi Ya'll,

    To start this week off, weather turned just beautiful. Low cool morning temps and nicely sunny all day. I'm trying to get a few things done before my next treatment on Wed but it seems like every hour I feel the dread of upcoming chemo.☹️

    Cindy- did you get your port put in? Hope your next round doesn't knock you down so hard. Curious, why did you not receive any steroids last time? How do you like your new wig? Im going to start looking again at more wigs and head covers. I just have not been in the mood to even think about it lately.

    Speaking of hair loss: I finally had my grandchildren(age 6 & 9) stay the weekend with me. We had not been together in person for 6 weeks, and I have gone 90++% BALD during that time. I was a bit nervous about how they would take my balding head look. Kept my beanie on for a day and then asked them if they wanted to see granny's head. After a resounding yes, a big reveal and a bunch of giggling, they were soooo okay with it. It was a huge relief to me. It didn't bother them as much as it does me…probably a lesson to be learned from children.

    rugger and suckitbc-how are you? Have not heard from you in a while. Hope all is well.

    May we all find strength to get through this week with grace and joy. Cheers!🧚

  • cindylou416
    cindylou416 Member Posts: 33
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    Hi Firefly- thank you for checking in and for the encouraging words! Love hearing from everybody😊

    I’m getting my port put in on September 25 and I think it will be a big help because they have such a hard time finding a good vein-I end up with bruises all over my arms. I asked about the steroids and I was told that they give them for the first 3 treatments to prevent any reactions. But once those three treatments are done, I was told I don’t need to have them anymore. However, my doctor said that if my hardest day is 2 days after treatment, I can take one one 4 mg tablet of dexamethasone on that morning and it will help to relieve the fatigue.

    I did some shopping on wigs.com and found this beautiful one by Raquel Welch. I didn’t think it would work out purchasing some thing like that online but I watched their videos and I read the reviews and this was a “low density” wig which has less hair, because in real life, I have pretty fine hair. So when I got it in it was perfect. It was very lightweight, fit beautifully right out of the box - i highly recommend and it was about $310.

    I’m so happy that you were able to spend time with your grandkids, there’s nothing like having the family around to lift you up!❤️❤️❤️

    I hope everyone is doing well this week, thinking of you and sending you hugs and lots of love

    Cindy

  • fireflyhill
    fireflyhill Member Posts: 28
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    Cindylou-Thank you for the information about your steroids. I'm still getting steroids but like to know what might change in the future. I think you will like the port. It makes chemo day so much better all around. Easy access for blood and infusions and also frees up your arm. No more stick, stick trying to get a good vein and the machine beeping every time you move. Anyway, hope your port placement goes super smooth next week.

    I just got home from my 3rd round of A/C. Infusion went well. Now Im going to drink lots of water and rest. Which then means I have to get up to pee…this will be my routine probably for next couple days: DRINK, LIE DOWN, GET UP. LOL

    Cheers to all.

  • rugger11
    rugger11 Member Posts: 9
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    Hope everyone is doing well!

    Firefly- thanks for checking in! I had my second infusion and I'm realizing my side effects are worse days 2-10 but am feeling much better now, just tired easily. That's great you were able to spend time with your grandchildren! I hope you are doing okay after your infusion yesterday! Sounds like you have a good plan in place! Hang in there!

  • suckitbc
    suckitbc Member Posts: 19
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    Hi all, I disappeared for a while because I needed a break from thinking about bc for a bit. However, the support I get on this site is helpful so here I am! My 2nd round was so much better than the first. Only had 5 icky days and then everyday since has been an improvement. It’s pretty cruel that we get tortured, then start to feel somewhat normal, and then take 50 steps back and get tortured again. Cancer is a sadistic thing!

    How is your 3rd round going firefly? I am trying not to think about mine next wk. but it’s always lurking in my mind.

    rugger-how do you feel?

    Cindylou-how is your port? I didn’t get one this time, but my first time around I had it and people told me to name it because it’s a part of you for a while. Unfortunately I hated it so I named it a**hole! But most people have no problems with it so maybe think of a fun name.

    red lion-i think you're right, you will come out of this mentally stronger. How can you not?!

    Anyone else getting nervous about the germs? Flu? Covid? My sister (42) actually has severe covid right now. Been in the hospital for days. Everyone thinks covid is nothing now but it can still be pretty bad and I worry how awful it could get for us since we’re immunocompromised. Hibernating is going to be my life now. On that note stay safe! Be well! You got this!