Starting chemo February 2020
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sweettalker, it makes me feel a little better that I’m not alone and no one else knows how to combat the flu symptoms. I’m a big cry baby always have been so I have no problems crying if I need to but for some reason I haven’t cried but maybe a handful of times during this journey. I cried when I had a reaction to the taxol, twice. I have two 8 year olds and found a video on YouTube that explained cancer and that I was still the same person even if I looked different. YouTube has a lot of good videos to explain for kids.
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Hi All!! I am new to this site and have not figured out how to update my Diagnosis section.
I am in Concord NC and am 43 years old, 10/2019 Diagnosed with 2 cm Stage1A IDC right breast- lumpectomy with 4 node removals 12/2019, remained stage 1A, ER+/PR+, HER2- Onco 19, genetics negative
I have started TC chemo on 2/20 for 4 rounds with Neulasta after each.
My first round was horrible- I had shortness of breath, fever and headaches that sent me to the ER on day 6- no clots, no infection, all checked out- but this has scared me for my next round next week. We decided to cut the dosage by 25% and to not take the Neulasta in case that was causing the severe SE's.
Have any of you heard/experienced this? My Onc and internist both think I may have had a viral infection prior to chemo- and that could have been the cause. But I am so unsettled since no one can say why that happened, only that it's "not normal".
I am so close to cancelling all chemo- as I was given the option with my micromets and Oncotype score. But on the other hand, I don't want to quit because I want to do anything possible to improve my chances of non-recurrence.
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Sorry no, I haven't had those SEs i hope cutting the dosage helps as that sounds pretty scary.
Hray - i do have flu like symptoms too. In fact when most people ask i tell them i feel like i have the flu, so throat a bit achy, no fever, tired, etc.
It sucks, i just keep counting down the weeks until it's over with.
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Hray1993- I also felt like I have the flu for 4-5 days. I made myself walk the dog every day. I think the exercise helped, but I don’t know for sure.
ScatteredEnergy, Dysonsphere, and Hray1993- Y’all look beautiful! Thank you for sharing the pictures!Jcerroni- Welcome to the group! That does sound scary. I hope the changes help you avoid a repeat. If you’re not going to take Neulasta, will they do something to make sure your wbc count doesn’t drop to low?
I’m going in for round two on Monday. I’m really hoping to avoid the bone pain this time. Let’s see if the double antihistamines does the trick.So, at what point will I be completely bald. I still have hair- it’s very sparse, but it’s still there. Will it fall out after round 2?
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Dear jcerroni241,
Welcome to the BCO community. We are so glad that you reached out to our members. At the same time we are sorry that you had such a rough time with your chemo. Please stay active here and find the support that you need. You can go to your profile and update your diagnosis and treatments. Be sure to make your settings public if you want your information to show up in your signature line. Let us know if you need help.
The Mods
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Sweettalker52, I talked to my kids matter of factly. I suggest your daughter talks to her prior teaching your house and maybe even show her a pic so she is not shocked. Once the child meets you she will ask cautions and you just answer them. Not bid deal imo.
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Sweettalker52- I used resources from MNangel.org to help explain things to my kids. It’s based in MN, but they have access to some online resources for a variety of ages if I recall right.
Jcerroni241- welcome to our group! Sorry to hear you had a rough first round. I just got Neulasta added this last round to my TCHP and so far on day 5 I seem to be tolerating it well. Not sure what to expect over the next few days. I was neutropenic last time and it was a big pain. Hopefully your MO can find a good balance for you.
Hray- I hope you feel better soon. I def feel run down after round 2. I get a lot of sinus pressure but seems to be a little better this round (no infection).
I am on day 5 of round 2. I generally feel okay. Headache, sinus pressure, very tired. No fever or chills so far so I think the Neulasta helped with that and I haven’t had many SEs from it yet. My two youngest had a stomach bug and were throwing up the last 2 days, but it seemed to have (hopefully) passed. I just would like a weekend without sickness in my house. We just can’t catch a break here! It’s finally nice out (50’s) in MN this weekend so I’m getting out for some walks!
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" was neutropenic last time and it was a big pain. "
That's me this round and I had the Nuelasta shot both rounds. Hopefully, they bounce back. I really don't want any delays in my schedule
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how’s everyone feeling today? I’ve slept pretty much the past two days. I’m feeling better today. Can’t get over all the mucus in the back of my throat though. It’s so slimy feeling and gross. I think I’m gonna take some Sudafed and see if that helps. Hopefully that’s okay. Flu feeling is gone finally thank goodness!
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Hray - I've been sleeping off and on all day! Just that tired, achy, headache-y feeling. Made dinner, but in no hurry to clean up the kitchen. Nose not as stuffy, no sinus pressure compared to other days.
My gripe for the day: Two people came to my house and sneezed in my personal space even though I was doing my best to keep them five or six feet away. I shouldn't have to wear a mask in my own home! Grrrrrrrrrr
Thank you all for the suggestions on prepping my seven year old granddaughter who's coming to visit. I appreciate it.
TexasMama - My hair loss has slowed down over the last four weeks. I still have a few wisps, as well as some brows and some eyelashes and body hair. My head looks kind of like an infant whose hair is starting to grow. Lots of bald spots, but a little hair in places. Very wispy. Not very attractive on a grandma in her 60's. LOL I'm not brave enough to go out without a hat. Found some comfortable ones at headcovers.com I like the ones made from bamboo. Very soft.
Jcerroni - Welcome. You've found a good place to connect, ask questions and learn from other amazing people on the journey with you. I'm not kidding, these are people I admire so much. Concerned about your dropping Neulasta because I know that it works. I'm on Day 19 of Round 2 of 4 dose-dense TC. Round 3 Wednesday. Side effects you described are unpleasant but there are strategies to deal with them. Read back through the posts here in this thread and talk frankly with your medical oncology team. And Best Wishes.
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Hray1993- I’m glad to hear that you’re feeling better! My second infusion is tomorrow. I took a long nap today. It was lovely!! I had a hard time sleeping for several days after my last infusion. I’m sure the extra sleep today will do me good.
Sweettalker- That describes my hair loss too. And yikes! You don’t need people sneezing around you!
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My 3rd AC round update.
Infusion day -- felt pretty normal and had dinner with friend.
Injection day -- felt tired but was able to drive myself for injection.
3rd and 4th day -- I've had a lot of fatigue early on this time around. A little nausea. I'm looking forward to my IVs this week. Even though I gain a few pounds every time I have some steroids, they help so much. For me, it's usually the 5th through 7th days that are the mystery. I may feel okay, I may feel much worse. I guess it is because of the white blood cell count.
As for advice about children, I would say they are so resilient and will take it much better than you think, it's just important to be positive about the changes.
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My 4th DD AC update - for some reason this treatment cycle has been a lot easier on me than my 3rd round of AC - the fatigue I experienced after the Neulesta during round 3 really knocked me out for days 3 & 4 and while I started feeling a bit better from day 5 on it was really not until day 10 that i would say I felt 'good'. On this 4th round I didn't experience any fatique from the Neulesta - have no idea why - but I am not going to complain! I still find that sometimes I will feel like I can eat more than just a small meal - but if I allow myself to eat a "normal" amount, my stomach will soon feel like I have eaten bricks. This icing of my feet during the "C" portion of my chemo last week definitely helped - no blisters or sore areas from walking. Tip of my fingers feel calloused and sore and my hands definitely look 'prunes' - as if they have been soaking in water. I am trying to drink more sparkling water with lemon and less gingerale as I just seem to feel more hydrated with the water than with the gingerale - but still need it when I go too long between snacks/small meals.
Really nervous about starting Taxol - more because of the "unknowns" as to what side effects I will experience. I am doing DD Taxol - so will still be getting Neulesta the day after infusions. My doctor has suggested glutamine powder - 30 grams/day in either 2 doses of 15 grams or 3 doses of 10 grams. I am going to try adding to smoothies and see how that goes this week as doctor wants to know how my body reacts before I start Taxol.
I have definitely lost my nose hairs so I am experiencing the forever runny nose that I have read about in other forums -
I do want to share that I had read on other forums that some women experience depression as they approached their "half way" point in chemo - and I definitely experienced that toward the end of my 3rd treatment cycle. What made it worse was that the 3rd cycle was so much harder on me than the first two that I was convinced that all remaining chemo cycles would be like the 3rd or worse. I have been so happy/relieved that the 4th cycle was nothing like the third so please don't feel that one 'bad' cycle means that all remaining cycles will be bad.
Best of luck and lot of love/prayers to anyone having their infusions this week.
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Dysonsphere- you're totally right, children are resilient. After less than a week my kids have totally adjusted to my hair (initially they struggled) and it's just how I am, yet here I am still struggling with it haha. For my kids it's a non issue now. I agree with staying positive- that's what my husband and I have been trying to do when we talk about it.
Maddy83f- so happy to hear round 4 was better than round 3! I can understand the nerves around switching to Taxol now. It seems just when we figure out how one treatment goes it's onto the next. Hopefully Taxol is easier? I had Neulasta for the first time this round and it knocked me out for a day with some massive fatigue, but so far that's the only SE I've experienced with it. Crossing my fingers it stays that way.
Hope everyone has a good start to the week- May the SEs be minimal and infusions go well
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"I do want to share that I had read on other forums that some women experience depression as they approached their "half way""
Did they say why? I'm just curious. I have some anxiety starting about treatment #3 in 2 weeks. Mostly because I'm on the rebound where I feel good, have an appetite and food tastes good again. At the same time I'm excited about getting to the half way mark.
I just ordered glutamine powder from Amazon, I was told to add it to juice to help with avoiding neuropathy.
From what I've read people who have AC + T seem to do well the Taxol portion. I hope you have good luck with that and mild SEs.
ETA: Do you guys have masks? I don't spend time in crowds (work from home) but with this whole Corona thing I'm wondering if I should wear them to go food shopping?
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Morrigan - they didn't say why they were all feeling down/depressed around the midpoint - but there were several observations within the group that they were all feeling that way at the mid-point.
I am not wearing a mask - just keep washing my hands a lot - which I have been doing anyway since the start of chemo.
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I wear a mask in public. I know it only keeps my own germs in, and does not prevent other germs from getting in. It does prevent me from touching a surface that is not sanitized and then touching my own face.
Most important to me, it tells people in the store or wherever that they should keep their distance from me. The doctor interviewed on TV said that the virus can travel 5 feet, so try to stay 6 feet away. Not always possible! And most places that sell masks and hand sanitizer are sold out now.
Have a good evening, everyone.
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Just checking in. On Day 8 of my 4th and final DD AC and actually have a new SE - my chin is red and covered in white heads (sigh!). When I reached out to my doctor he said was a potential SE of AC and prescribed an ointment for me. Just passing this along - truly wasn't expecting to experience a new SE from the AC at this point in time so I thought it was worth sharing with everyone.....
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Had severe back spasms again yesterday (day 7, exactly the same day as in round 2) - I'd taken Flexeril the night before and thought I'd had it taken care of, but I needed an additional one during the day as well. Then I had whole body myalgias and a temp of 100.2 for a few hours - thankfully it came down and I didn't have to go the ER.
During round 2, I prioritized sucking on ice chips over icing my hands and feet (I forgot to start ice chips until halfway through round 1 and I had a lot of needle-like poking pain in my mouth) and it paid off - much less discomfort and distorted taste this time around. And my hands and feet aren't any worse off for the half-assed job I did with them (used Natracure ice socks for my feet and didn't switch out the ice packs when they warmed up; used regular cold packs for my hands but was reading a booka at the same time so let go of them repeatedly). Hands and feet have minimal neuropathy.
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Chemo #2 today. My terrific caregiver and hubby.
I'm halfway done now.
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nimmy- Sorry about your back pain. I’m glad to hear your back was better this time.
Craftylife- Congratulations on being halfway done. Great picture
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My third infusion is in the morning. If I suck on ice chips, will that change the metallic taste and taste distortions for the rest of the cycle? Or does sucking ice chips during the infusion only help with mouth pain right then?
Have a good evening, everyone.
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Good Morning and Good Luck today.
My understanding is that Ice Chips during chemo help prevent mouth sores. I've been told that using ice chips before you eat to numb your taste buds helps with the messed up taste but, i haven't had much success
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Thank you, morrigan_2575. I will try the ice chips during my TC this morning. Can't hurt, right? :-).
Best Wishes to everyone today.
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Checking in one week out from round 2 TCHP. I’ve got a drippy, yet stuffy nose that fortunately has been relieved by nasal decongestant. Also some digestive issues. Fatigue seems to have passed now. Tastebuds a little off, but not as horrible as last time surprisingly. Now hopefully on the upswing until next round on 2/24.
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I had IV today so I'm feeling a big more energetic this evening. I will have another on Friday to get me through the weekend. I have one more AC round and then start my 12 weekly Taxol. I have been really struggling with depression this round. I suppose it is because there is still so much more to go on the chemo, then surgery, then radiation. I am doing all of this basically alone. The only support I have on a consistent basis is my 5 yr old. If it wasn't for his gorgeous smile, I don't know what I would do. I have no SO and no family support. I have one close friend who is also recovering from cancer so we help each other when she can. Otherwise, it's just me sitting here thinking about how much more I have to go through. I have always been very independent and this cancer has really blown my whole "I can take care of myself" sense of self out of the water. I wish I had some unconditional love from a SO or parents of family. But there is none. I know perhaps there is some wisdom to be gained from this on my journey but right now I just feel lonely.
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@dysonsphere - hang in there, kiddo. You are NOT alone. We are here for you, too. I started telling my medical oncology team about my hyper-emotional mood swings and started crying. Got a script for anti-depressant that will work with my AI down the road. My TC (Round 3) started behind schedule because my port refused to cooperate. It took three people to get an IV in for a blood draw. I nearly lost it. They added some brew to the port to clear the clot and got it going before the infusion. Thank goodness. Long day. Wishing you a peaceful state of mind and sweet dreams.
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Dysonsphere - I'm in roughly the same boat as you. I don't have an SO, I'm an only child so no siblings, my mom is too old (83), I do have cousins but, they have their own lives and, I hate to be a bother (curse of being an only child). My close friend has been my only support and, the only thing i will actively ask her for (again hating to be a bother) are rides to/from chemo or my port.
I know how rough it is, I haven't even reached the halfway point of chemo and, there's still Surgery (at least 1, possibly 2), maybe radiation (haven't talked about that yet), and 1 year of Targeted therapy (H/P or Kadcyla). So I'll be getting infusions every 3 weeks until (at least) Feb 2021.
I get through it by trying to look at the smaller picture. Yes, there's a very long rode ahead but, not all of it is as equally rough. To me Chemo is the worst of the lot. Yes, surgery will be rough but, it's also a shorter period (2 weeks vs 4.5 months). Yes Radiation has it's own drawbacks but, everything I've read is that it's not as bad as Chemo.
I find it easier to focus on the smaller pieces, 2 infusions down 4 to go. Next week I will hit the halfway mark on Chemo etc etc
I wish you the best of luck. Everything I've read is that Taxol is much easier than AC. There's also no harm in asking for medicinal help (anti-anxiety, anti-depression meds)
Met with the NP yesterday, all my blood work is back up, WBC back to normal range, Hemoglobin up to 12, my platelets are still down but, she said they will come back. Told me to increase my protein intake. I'm on track for infusion #3 next week.
I asked about Corona Virus, they said avoid crowds, stay 6 feet away from people when interacting, and wash hands and don't touch my face. I was expecting a self quarantine but, she didn't mention it.
What have your MOs recommended?
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Dysonsphere- I definitely struggle with some depression off and on throughout this as well and have always struggled with anxiety. I am taking a small dose of anti-anxiety meds, which helps and am also seeing a therapist at my treatment center. I agree it’s hard to go from being independent to needing help and support. Similar to Morrigan I try to focus on the smaller picture (easier said than done most days), especially with the TCHP marathon treatment. Hugs to you. Hang in there.
Morrigan- my MO said the same thing when I asked this week. It’s so hard to know what to do about this coronavirus business. At this point I am still planning on returning to work teaching on Monday and when I asked I guess I kind of expected them to say not to, but they didn’t. I may go crazy if I have to stay home anymore. My mental health can’t take it, but also don’t want to risk my physical health. I’m just so unsure how serious to take it and how likely I am to be exposed? What a terrible time to have to be doing treatment (okay, actually anytime is a terrible time to have to be doing treatment!). My greater concern is my husband getting it and exposing me to it (he works in law enforcement in MPLS/St. Paul) since he interacts with so many people in such a large area. He’s taking lots of precautions, but it still worries me
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Yes, the Virus worries me, especially since people are contagious for 5 days before being symptomatic.
I'm doing everything I can to limit exposure but, it is scary since we are dealing with weakened immune systems on top of everything else
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