Chemo starting December 2017
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Exactly on the hair and makeup thing! I wear simple makeup normally. I figured I’d start having fun with more dramatic eyes or lips. So fun! My daughter has done some tutoring with me and we’re having a ball! All kinds of hats and beanies have been made and gifted to me. We shaved my head in Friday, after Chemo #2 as my hair was falling out like crazy. I feel amazing and haven’t even wanted to cover up my shaved head!0 -
looking good mjb
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Hariry, Dark23, PauletteK,
Today I am a little better. I am still nauseated and sick to my stomach a bit but not as bad as I was Friday and Saturday. I have the patch on they gave it to me, and yesterday my doc gave me another nausea pill and switched the zofran dissolvable tablet for a regular pill. I’m having her to take my meds all the time. The problem is that I haven’t been drinking enoigh water. So super worried about that. I just ate a bit of soup so we will see. Earlier I had about 5 crackers but am not it’s drinking a lot of water and just can’t make myself :
The thought of going through this 3 more times is just freaking me out guys. Idk how I will handle this it was worse than anything. I think Hairiry said worse then pregnancy sickness, so true.
Hugs to you all.
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Mjb1018, you look beautiful!!!!
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Daniz and sswp...Thank You! I figure the bald spots will blend in soon as I lose what’s there. Ha ha. I may have to wear hats to stay warm then...
Daniz, I’m so glad you are feeling better. Don’t forget about popsicles and jello, too! They count as liquids. I kind of look at round 1 at as a baseline and you’ll be better equipped to know how to handle your side effects. Round 2 has been easier for me. The only major difference for me is sleep. That was constant and easy. This time I’m just now feeling like I can get good slept on day 3. Nausea in check and appetite is good. So far. Day 7 was my worst last time, so this time I know to take meds on schedule whether I think I need them or not
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mjb1018,
Do you take your nausea meds regularly through day 7? I’m not sure what to be doing and I hate the way I feel. I took meds today and slept almost all day it’s awful. Im still gagging at times but will take my pill here in a second. I’m also having tons of abdominal pain, like ovaries and stuff. Anyone else experiencing this?
Thanks ladies.
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Ladies, all of you are real fighters. Keep up the good spirit!
Mjb, you have such a lovely and sharp features, the shave compliments that. You remind me of a Canadian singer (sorry can't remember her name). I had my first AC on 15/12 too but my onc thinks that three weekly will work just fine for me (she mentioned that Caucasian do dose dense better because of some pharmacokinetics difference between ethnic) by now my hair is falling off, more each day. But I am still ok with it. Another two days I'll be having my second round. Which nausea meds you think is helpful?
Daniz, I cried on my DH s shoulder on d 4-6, asking if I can just quit the next three rounds. I totally understand how tough it is. I felt intoxicated, not being myself, restless and poor quality of sleep, all perceptions changed, including my mind. One minute I'm alright, and the"battery" would just go flat the next minute. I was lucky I didn't have GI symptoms, no D or C. But the headache and stuffy sinuses were awful. Guess what? After the cry and tears my sinuses were much cleared.....😂
Take one step at a time.... some fighter buddy here mentioned, remember? I take her advice. Slowly, not everyone experience the same problem but everyone here is going through the pain.
Love, and as Dark13 said, PRAY ALL THE TIME
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Daniz, I take a steroid and an anti nausea as Rx’d on day 2,3,4. Then, it’s as needed. In the evening I take Ativan. I did take an extra anti nausea yesterday. Since I know Wednesday and Thursday were my sketchy days, I’m going to bump it up and take the extras whether I think I need them or not. I really think it’s just a matter of learning what works for you. I think the best thing is to just be good to yourself! If you want to sleep, sleep! Don’t feel bad about how you feel. Take care of you.
Thank you, Hariry! It’s funny, my husband said when my hair falls out my nose would be bigger. Ha ha. No, silly, same nose! We have a good sense of humor about it all. About the meds, I’m not really sure. What I’ve been Rx’d works well. The on schedule ones are Dexamethasone (steroid) and Ondansetron (nausea). Then, I have Prochlorperazine Maleate and Ativan as needed.
Happy New Year everyone! 2018 is our year for healing and strength
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Daniz - so sorry to hear it’s been so hard. It sounds really rough and I feel for you. I hope you are out the worst of it now, and will not be able to have a few reasonable days. Try sucking broken ice chips, it counts for fluid and also eases nausea. My DH made Popsicles from a fresh fruit & cream smoothie = more fluid & calories.
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Sswp & mjb - You both look wonderful!
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Happy New Year,
I've never posted on this or any other public forum, but after playing voyeur for a few days, I created a sign in and wanted to give it a try.
A little about me and my BC journey so far… The day after my 40th birthday, I saw my primary to get a referral to PT for a foot injury. After the referral, she sent me directly to mammogram knowing if I didn't go right then, I would delay it months or years (she knows me well). Let's just say I sent an email a month later thanking her for saving my life.
What would normally have been what the doctors call a straight forward case, my journey had an unusual turn. See, I also have Tourette Syndrome, an uncontrollable movement disorder. Because of this, radiation was determined by the Radiation Oncologist as "too risky." They were considering me for a newer radiation procedure called brachytherapy, since I wouldn't have to stay still during radiation, but there isn't enough research on the long term benefits of patients my age, so that was also ruled out. So, I had a lumpectomy as a "staging" procedure (to figure out the stage and pathology, and as a holding pattern until I could be scheduled for the mastectomy with reconstruction).
After I recovered from the lumpectomy, I had my first chemo the day after seeing my MO, 12/22. He said that we had to start right away because there is a 30 day post-op period when chemo is most effective and I saw him on day 31. YIKES! The good part is that I didn't have time to work myself up into a panic, the bad is that I wasn't as prepared as I would have liked to be.
The chemo treatment itself, Taxotere and Cyclophosphamide, was fine. I only have to have 4 treatments, 3 weeks apart. I had mild side effects initially (some queasiness, low energy, decreased appetite, and taste bud change) and expect to lose my hair by the weekend (2 week mark). But, my white blood cell count dropped, so my MO put me on the Xarxio shot, every other day, for 3 doses. The first one was easy- my boyfriend injected me without issue and my energy level went back to almost normal. But the 2nd shot hit me HARD. Within a few hours, I had excruciating pain in my lower back, hips, legs, and knees. I haven't felt pain like that in my life and it brought me to tears. I remembered hearing about Claritin for bio-similar injections so I called and got the "ok" from the pharmacist yesterday evening. I'm not going to lie- the pain got worse before it got better. The pain has been better today, manageable even, but I'm petrified of the shot tomorrow, my first day back at work since chemo.
Work has been accommodating, and I have FMLA protections in place, so I will just do what I can, when I can. It looks like there are a few ladies in here with similar dx and treatments planned.
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LAMinders, I'm so glad you posted here, but am sorry you are going through this. I do find this is a very comfy place to be. Man, your shot sounds painful. I'm taking a Neulasta shot the day after Chemo and it hasn't been too bad. I just did round 2 on Friday. Monday and Tuesday seem to be my best days, but I was thankful for the holiday today. My work is very good about all this, too. I'm hoping I can get through without too much unpaid leave, but if I have to, do be it. I own my own small business, too, so that helps. Good luck tomorrow
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Hello ladies, thank you all for your replies and recommendations. Today (Monday) I’m feeling much much better. I ate some cream of wheat, soup later and now am even having mashed potatoes. And so far so good. I hope it stays in. I haven’t needed a pill since last night. I even managed to shower and wash my hair and blow dry it. Still need to figure out when to cut it I have to cut it since it’s so long and don’t want to school my 5 year old or myself honestly....
I’m just TERRIFIED you guys of the second infusion. Scheduled for the 12th. Terrified doesn’t wven describe the fear I have. I hear that the second one is way worse Bc the chemo is cummalative.. did anyone else have this? Ugh I hate this so much.
I hope you are all having a good night. I can’t say what a relief it is to come on here and see responses from you ladies and honestly it’s a relief.
LAMinders,
Sorry to hear about your rough experience not having much bone pain but my side effects have been terrible. Definitely keep chatting and posting it really helps even though it’s all virtual it’s really helpful. Good luck
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daniz1983: I was terrified of my 2nd dose too because I had such a hard time with round 1, I really hate puking. Truthfully my 2nd was much easier because they had my meds right. Call your Dr and tell them how you feel, maybe a lorazepam will help you. Hoping your round 2 is ieasier to
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Swewing, thank you for that. I hope mine will be like yours. I have an appointment with my oncologist Friday to check blood and talk about sideeffects. So they changed your medicine after the first one? She did add a third anti nausea medicine which I was taking yesterday and honestly felt like I was overdosing on the meds. Thank you!!
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My second one has not been worse than the first. I want to say it’s been better. Not as sleepy and eating has been a little easier. My taste and food sensitivities seem heightened, but now I’m only eating what sounds good. Better than not eating, right? :
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mjb1018, that’s nice to hear that your second one hasn’t been worse. I hope and pray pray pray minenisnt either. But yes at least you are eating that’s great!!!! It’s crazy how excited I got to be able to eat today. I lost 7 pounds since Friday. It’s insane.
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Daniz, keep drinking water, tea or juice. You need a lot of water during chemo because you don’t want the chemo in your body for long time.
Mjb, during chemo all of us eat whatever especially I lost my appetite during AC.
Happy new year to everyone and you all are warriors! You can do it!
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LAminders, thanks to have shared your experience with us. I find this platform a really good place to rant, vent, and have mutual encouragement.
Daniz, glad to know you are better. Mjb, glad to hear that the second round won't be that bad, prrrrrrobably. Fingers crossed for my second round tomorrow.
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ok i can not shake this diarrhea. I have woken up last three days in middle of the night with it. I was also blessed with a heavy period this weekend. Does anyone else experience diarrhea daily? It’s only about twice a day but dang! I have taken Imodium but I wonder if there’s a threshold of too much
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Hi LBoyMom- Yes- I have had the "big D" daily (x2!) since I started treatments. I managed to get my period DURING my first chemo, and again just 2 days after the last one ended. I had to go off BC pills due to the hormones so my system is all out of wack. On the joys of womanhood.
Thanks to everyone for the nice welcome. I had the second shot this morning and so far only a little pain/soreness. My MO called me and ok'd for me to take Norco (have some left after the lumpectomy) if it gets bad again. Said my marrow must be working overtime- guess the shot is doing what it needs to do, but dang! Made it to work for a whopping 2 1/2 hours (of a 8 hour day), so... yeah me! The head boss (aka my boss' boss) saw me today and called me into her office. She told me (almost a directive but in a super kind/caring way) to work at a satellite office MUCH closer to home. She said if I have the energy to work, no need to waste it driving! This will cut my commute by at least 2 hours daily and is a win/win because they will get more work out of me this way too.
Sorry to hear so many of you are having stomach issues. Sending positive vibes and healing thoughts your way.
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Thanks GenevaC. Was hoping to show up at work with my wig today but the following sequence of events prevented this.
I developed a lump in my surgery arm just above the elbow joint on my bicep during the weekend. I phoned the cancer triage and they said to go to emerg to make sure it wasn't a blood clot. After 4 hours waiting in emerg, the doctor said he didn't know what it was, wait till you see your oncologist, it could be cancer. He said I saw your pathology report and you have at least a few cancerous lymph nodes. I'm like, no, I have one lymph node that had cancer. My husband chimed in and said the surgeon was very clear, out of 15 nodes removed one was cancer. We went home and I checked the pathology report which confirmed one lymph node. It was a very upsetting experience, it made me question my pathology results because when a doctor says something, it holds weight.
First thing this morning instead of going back to work after the break, I got myself seen at the cancer center. I no longer make apologies for putting myself first during treatment, work is secondary. Long story short it's a cyst and the onc said it has nothing to do with my cancer.
Part of this is that I have cording through my surgery arm and I thought maybe the bump was related to that. Waiting to see PT, finally got a referral today so hopefully soon. My arm issues need to be sorted before radiation.
We can't be like everybody else, any lump puts us on high alert. Tired of being scared but relieved that it turned out to be nothing.
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SSWP- what a scary experience! Glad to hear you got the all clear. I'm proud of you for taking care of your needs before work. I'm still trying to figure out how to do that. I read back and saw your pic with the adorable wig! It looks super cute on you.
I called to register for a “Look Good Feel Better” workshop in my area. If you don't know about it, it's a FREE workshop through the American Cancer Society. The lady on the phone talked about a free wig program, but I declined since I already have one. But, she is sending me a coupon for $70 off of a wig from their website in case I am interested in another one. May use it to try a halo, but I'm not sure. Sounds like they have many good programs available and the lady emphasized they are available for calls 24/7. Here's the number ifanyone is interested: 800-277-2345
I am so grateful for all of the amazing organizations out there. Brings some light to a sucky situation.
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Thanks LAMinders. The LGFB workshop sounds likes a good resource.
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LBoyMom: I don't know if it will help you, but when my gut was at its worst (abdominal pain, bloating, Big D) I called the PA and she recommended taking Florastor, a probiotic which can help restore the natural biome in your gut. You can find it with the other GI OTCs like Pepcid, Prilosec, etc. Warning: the brand is very expensive but the PA said the generic is just as good. In the same category is Culturelle and Pearl, but they are not as effective as Florastor says my PA. I take it every day and have to say that my GI side effects have diminished significantly now that I'm in Week 2 (Day 12). Or, it could just be that I'm in Week 2 and all the conventional wisdom is coming true: you really do get some good, high energy days after a week of crap.
And now a question for you all about mind over matter: my PA and at least one of my infusion nurses reminded me that just because they want to prepare me for SE does NOT necessarily mean the SE will hit. I have to admit that I spent much of the first 7 days after my first infusion, tip-toeing around waiting for every nasty SE to hit me. Days 3-6 I felt tired and fluish and had a couple bouts of D. But by Day 8 when I went in for my weekly Herceptin, I was feeling pretty normal and felt fine after the infusion. So fine that the next day I went to my regular 75 minute yoga class and the following day I swam 2400 yards (I swim in a Masters program). My WBC was high so I decided I would take advantage of the opportunity. Today I commuted downtown for my job for the first time (I worked from home Week 1). I didn't get tired and was able to function on most of my cylinders. So I'm counting myself exceedingly grateful. And I'm beginning to consider that before chemo started I may have been borrowing trouble with all my reading and agonizing over SE and being totaled by each cycle. I know that each cycle accumulates and by Cycle 6 (in April, arrgh!) I may be singing another tune. But, as shown by these boards, mental attitude makes a difference. And I think I'm going to reorient my thinking from "when is the next SE going to hit?" to "well, I haven't experienced (insert SE here) yet, so I'm going to assume I escaped." Because I was exhausting myself waiting for the other shoe to drop.
All by way of saying, I'm grateful for all the positive energy on this board/thread. You truly are all warriors.
Mindy
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Wow! mjb - you look MAH-vel-ous, simply MAH-vel-ous! Thanks so much for sharing this photo. I got my hair cut into a pixie two days before my first AC. My next infusion is Jan 8. Should have been Jan5, but postponed bc of wedding on jan6 and concert on jan7. I have a really beautiful wig that I got through the Bryn Mawr free wig program. I got it back in Oct. when we weren't sure if it would be surgery first or chemo, so I wanted to be prepared. I am excited to wear it and try my hand at tying scarves. My friend gave me an orange Hermes scarf and some others that she doesn't wear anymore. It is so cold in Philly so I need the coverage. I got some pretty knit hats that my friend's mom made for me and they had PILES of free knit hats at the chemo place (made by a knitting circle) - I took one with Christmas colors - really cute. I figure that I will get buzzed as soon as I can after it starts to fall out. I can't bring myself to do it sooner. I have really thick hair. I am wondering if I will be pixie or wig for the wedding on Saturday?!?
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Hi Hariry and Daniz and Swewing and everyone! I am BACK. I was really down under for the first 6 days, first physically and then emotionally/mentally. The overall experience getting the chemo treatment was okay. I was really creeped out by the Adriamycin, though; The nurse had me suck on ice the whole time while it was being pushed (directly into my port and not through the drip). It is to constrict the blood vessels in mouth to avoid sores. Next time I will bring pops with me. I opted for Benedryl pre-med which really helped me a lot. Cytoxin gave me an immediate headache. As I was leaving, the nurse told me not to bother taking Zofran until 8 AM day two, but nausea started five hours after drip. I took compazine, but that didn't help much, just made me tired. Three hours later still suffering...took Zofran at 11 pm (helped a lot, but then after that not as much), Other SE:dizzy, weak, fatigue, pounding headaches, nerve twitches, bone aches (especially in ribs - from the Neulasta patch). I took claritin for 6 days to offset the patch. I also took Pepcid AC for 4 days.
Most foods gave me acid or regrets. Hard to find things I could eat or drink: here is my "good" list...dry toast, orange, avocado, unsweetened apple sauce, cheese sticks, chocolate sea salt popsicles from WF. Most things I would only eat one or two bites. I lost 6 pounds in 5 days. My DH prepared so many different foods out of the Cancer Fighting Kitchen to try to get me to eat. I spent a lot of time in bed listening to religious choral music - it really soothed my soul. End of day three I was craving a mint milkshake and I downed the whole thing and felt SO much better. Day 4 I was eating hummus and carrot sticks! In general I was afraid if I ate more than a few bites I would throw up, but I never threw up.
Thank you Hariry for the recommendation to use cold compresses; that was one of the most helpful antidotes for the nausea and overall bad feelings - I kept a rag by my bedside the whole time. Also Xanax helped me to sleep and when I had a meltdown on day five. Overall I slept really well. but when I was awake it was rough.
Day 4 I felt a bit better but headaches were really bad and it was Christmas, so the oncologist on call (not my regular doc) had me go to ER. They did CAT scan, blood and chest X-ray because I had pain in my bones. My WBC was up to 32K which is REALLY high. normal range is 3-10K. Mine was 5K the day of infusion. My MO thinks the headaches are from the Neulasta patch. They gave me a patch bc it was a holiday weekend - usually you go back the next day and get a shot and they will adjust the dosage; she said the patch is "one size fits all" - it did NOT fit me.... Also, she said they will adjust the pre-meds and steroids in the drip.
I went to acupuncture on day six and I went again today. My friend had bilateral and said that this really helped her with chemo SE. One terrible SE for me was on days five and six I fell into a terrible funk - yelled at my kids, hung up the phone on my sister and stayed in my room with shades drawn feeling hopeless and wanting to give up. I felt scared and alone and terrified of going back for another round. I even considered trying to find another MO who would tell me I didn't need to to any more Chemo. It was a dark place. I am happy to say I am feeling strong again and ready to enjoy these next days before round two. Trying to focus on the positive, the love, the prayers and trying to stay close to God. Thank you ladies for all of your entries. I read each one with love and care and wished I could join in the discussion, but I just didn't have the energy or peace of mind to respond. Laura
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Daniz,
I can completely relate to how you are feeling terrified. And, I too started to eat on the same day you did and also scared it wouldn't stay down. We are just a week apart and so much in common. I too lost 6-7 pounds in just 5 days, but I have gained 3 pounds back eating milkshakes lol! Hang in there...it really gets better. Also, the first round is really the worst from what I hear, bc your body is shocked and you don't know what to expect, how much to take and when and what works and doesn't work and the docs have to tweak things. The only reason things are "cumulative" is not bc the meds build up, but because your body gets weaker from the treatments. And, this means that the meds are working. I admire you for posting even when you were feeling so awful. I wish I had posted, maybe I wouldn't have gotten so depressed. But the headaches were so bad, I couldn't even look at a computer screen. I have felt so great since Friday. Full of energy and getting things done. Enjoying my children and DH. Now I am watching comedies. I read that laughing is really good for the healing process - good belly laughs! I hope you had a good day. Laura
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Hey Laura644!!! Sooo good to see you back and in great spirits!!!! I love your attitude back to fight this thing ready for round two!!!
I am so sorry you had such a rough experience with the first round and your meds. It sounds really tight especially given that your WBC was so so high. That's crazy and I hope they adjust it for you next round. I got the neulasta shot attached to my arm. It beeped 24 hours afternoon first infusion and went off into my arm. I did feel a bit better afternoon it went in. Was yours a patch or a shot that’s attached to the arm? (Hard to explain lol) I had to get my zofran changes to a pill form doc had given me a melt tablet it was so gross then she added and third medicine. Sunday I literally felt like I was overdosing on the medicine my head felt sooo bad and just like you so dizzy.
But I also had a very rough first round. Major major nausea and vomiting. I wasn't able to eat or drink anything I lost a total of 8 pounds and freaked out. Monday I started eating and drinking a and today I even had Chinese food. a friend of mine had it ordered and delivered it was so nice.
Anyway follow up appointment is on Friday for blood work and to y’all about sideeffects. I’m not gonna lie ladies I’m terrified still of round two. Terrified of what it’s going to do and how I will handle these sideeffects especially since some people are saying the chemo accumulates so it’s worse
Sending everyone hugs!!! Dani
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Daniz1983- too funny my friend brought Chinese takeout for me on the same exact day – day five . And I loved it. I had shrimp and broccoli and wonton soup and it was the best feeling being able to eat hot yummy food and the broth felt very nourishing. I think I had the same kind of Neulasta patch that you did. It was on a timer and it went off 24 hours after the infusion. It's a 45 minute release and then you're supposed to take the patch off . I was so doped up on Benadryl after my drip that when they gave the exit instructions to take the patch off I wasn't sure if I had heard it right, so I didn't take it off until another day later when Ibspoke to the on call– I wonder if that's why I got such a bad headache? I'm interested that you're getting bloodwork a week after your first infusion. The only reason I had blood work done on day four with because I went to the ER. But there was no schedule a follow up to get blood work done. Now I'm wondering... is it standard procedure to get blood work done a week after? I thought they just did it the morning of the infusions
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