Chemo starting December 2018
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Hi All,
Looks like I'm joining the December group, as well. Nice to meet everyone. I have my first round of Taxotere/Cytoxan tomorrow morning in Orange County, CA. Four rounds of 21 day cycles. I have my information session today with my oncologist's PA. I'm in a similar boat with @Christine1975 & @Phlorada, as the chemo recommendation came as a total surprise last week, but based on my oncoscore (22) + age (42), it's happening. I'm terrified of the SE, and I've used planning and retail therapy (as much as one can call buying queasy pops and cold socks "retail therapy", but at least it's a momentary distraction) to somewhat keep the anxiety at bay. I've scoured the forums for tips and lists to get ready, and cross checked against list from my MO. And today I'm getting my hair cut short!
Thanks everyone for sharing your thoughts and experiences. It's been really helpful to read all the posts so far.
- Melissa
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OCperegrina (Melissa) nice to meet you. I too got my hair cut short. I love it so much easier than my long locks in many ways... no headaches from having it tied up! My poor DH took me to the salon and I would glance at him during the cut and at times he was in shock.... he's still in shock after 3 weeks lol poor guy. In some ways it was a very liberating thing for me to do as it seems to me the ONE decision I made without consulting 2-3 other people.
Anxiety.... LillianGish....my worst day for it was on the night before and the original day of my 1st chemo treatment. I was so nervous I could have crawled out of my skin.
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Thanks so much for recommending this. I've been watching Dr. Longo and learning what I can about fasting mimicking. I have literally been totally exhausted from the se of chemotherapy. I know the nurse told me the names of each drug as she hooked it up to the iv, but the only thing I do remember is the name "red devil" and that it is the one responsible for my future hair loss. Everything else is passing in a blur. It's this nagging sense of borderline nausea and upset stomach and the fatigue that really bothers me.
I don't have my next infusion until the 27th of this month. I do go see my doc this Friday and I sure hope he has something good to tell me.
Thanks again
Debbie...(0;
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Welcome to all recent joiners, but I’m so sorry for the reason you’re here. I’m one who didn’t have much time to prepare either. I was glad to get started though. Lot of anxiety and fear, but really tired of waiting.
I’m on day 10 and feel great. I’m thinking for me this experience is going to be 1 week of feeling crummy and 2 weeks of taking care of myself to rebound quickly. I’ve made notes to myself on getting thru the 1st week side effects next time. As Matt Damon said in “The Martian,” we’re going to science the s**t out of this!
I know everyone has a different experience and treatment, but for me...the fear was worse than the side effects. Felt like a bad flu all week.
Took a medical leave of absence and I’m so glad. Time to rest, time get outside and walk, time to just....be.
Stay strong ladies. We got this!
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Hello!
Got myself somewhat ready for chemo. My doctor is telling me just to eat what I want..that is why I am asking for help. I haven't been given too much more information to battle side effects, but, that being said..
I found out when I went to chemo appointment, my doctor conferred with doctor at Moffitt Cancer Center and because of the size and type of cancer I may be a candidate for a trial. So tomorrow I am driving 3 hours to the appointment. I will still start chemo ASAP. If part of trial but I will drive 3 hours weekly to get it....anyone driving long distance to chemo appointments or part of a trial?
We have a group of poerful women! Than you for your inspiration!
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DAY 9 for me and I feel great, too, although I am not sleeping well. I have hard time sleeping, I feel like my heartbeat is faster than before but still within normal range. I am hypothyroid, is it possible that I am now hyperthyroid? I don't like my doctors, everybody is just going with the flow, none of them is pro-active, I have to tell them what to do. I will have new insurance beginning of next year, hoping to get a better team.
My second infusion is 12/26. I'm eating good and preparing for the next round. I feel like I am going on a boxing match with a person way bigger than me...I have to outsmart this dude every round until the last round. I just have to remain standing on the last round to win the battle. We got this ladies!
Praying for a minimal SE for all of us.
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Hi,
Be sure to have ice cold water to sip throughout. Comfortable clothes and shoes. If you're able, have your anti-nausea meds before you leave there. They should also include them with/prior to your treatment (or include them). I am certainly no expert having gone through only one treatment/infusion so far, but those are the things that I remember. Also, I didn't eat immediately after just in case there was nausea (and there was) and I didn't want to toss my cookies.
By the time you get this response you may have already had your treatment. Please let us know how things went for you.
Debbie...(O:
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Hello everyone! So grateful to have a forum like this. I had a BMX with expanders for reconstruction on 10/23 and at that time, they thought I wouldn't need radiation or chemo. There was a delay in getting my oncoscore back (27) so trying to play catch-up when they said I needed chemo. Scheduled to have my port put in on Monday 12/17 and my first A-C treatment for Friday 12/21. I'll be doing A-C every two weeks x4 then Taxol every two weeks x4.
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Hey y'all Well today was chemo day 2. It was really uneventful and I'm glad. BUT honestly I don't like getting the demethasone (steroid). Sheery my nurse tried to sneak it in and one second my scalf was on fire for about 10 swconds amd then that burn down below that makes me lift my buttom up off the chair for about 30 seconds until it passes. As som as I felt it I was like "Ooooooo! Sherry?" "Sorry I should have warnes you..." Other than that it was a breeze.
My BFF picked me up and brought me home. Was really nice she stayed for an hour and then had to go home to care for her DH. "Will you be OK if I leave?" "Yes I'm tired so I'm going to eat something and take a nap." My daughter promised to look in on me when she got back from picking up her daughter from school. I slept for 90 min but still feel some what sleepy musr be the Benadryl from my pre-med dose.
I met with my Oncologist and I had ??s for him. What is Perjeta? He told me and I'm not in it because I'm HER2+.oh ok. Did you do an Oncotest? No because of my HER2 status...ok.. why all the ??s I told him that now thay things have sort of slowed down amd I have time to think Im trying to look at the next 6-9 months of my life..... treatments, surgeries. ..options etc. He told me about ths San Antonio Breast Cancer Conference that happened recently and he told me about a new medicine for HER2+ IF the Herceptin doesn't work..oohh ok
Anyhow we discussed my SE and I told him they are managable so for now it's all good. Hooing week 2 goes better. As the learning curve continues.
Welcome newbies and please just jump im 8)
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Hello, beautiful warriors! Happy Friday to everyone! I love reading your updates and feeling like part of a special community here.
Today is my first chemo and I would be lying if i said I wasn't nervous. The steroids have been giving me energy since yesterday, but I fear I will hit a wall, so to speak, in a few days when I stop taking them. The first round of chemo is a learning curve, it seems. I have learned so much for these forums - they have been a lifesaver for me!!!
Well, I will update later after my treatment. Hope all of you have a fabulous Friday, minimum SE's, and feel as well as you possibly can going through this tough journey. Hugs to all!!!!
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nanette-- an alternative to Herceptin? That is great news. Would be happier if either was less expensive, but big pharm being what big pharm is......
I think the reason for no oncotype is that HER+ is so nasty that even low risk of reoccurrence should be minimized.
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Nanette - I don't have the same reaction as you for the steroids. But one of the three pre treatments (steroids, benydrill or pepsid) gives me blurry vision. I agree that the positive HER2 indicates chemo treatment no matter what. I had one done and my oncotype was 26 which is sort of low and a should I, shouldn't I question arose. I am happy my Doctor agreed to do the Chemo. He said no perjuta because it is another similar drug to herceptin and the low oncotype meant I didn't need to be over treated. HE also thought it hasn't been around for as long as hercepin and thats why herceptin was the better choice.
My second Taxol was yesterday. No allergic reaction this time. Some dry mouth and I couldn't sleep well last night. No herceptin this week so I am interested to see if the joint pain comes on tonight, but I am pretty sure it is the Taxol that caused it last week. Dreading it. Doctor thinks because of the sharp pains it could be nerves so he prescribed Gavapenton for me to try. I will let you guess know if it helps.
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To add my voice to the chorus, it has been *so* helpful to read about everyone's experiences. Thank you all. I don't have a ton of advice to offer yet, as a Day 2er, but will share my experience thus far.
Yesterday was my Day 1 of cytoxan and taxotere. With the exception of an initial reaction to the taxotere (flushed, tight chest, elevated heart rate), which was immediately addressed, and did not seem to alarm the nurses (apparently people like me with very fair complexions are often seen to have this reaction), it all went as expected. We were at the center for about 5 hours. Since I was being a good hydration patient, I drank a TON of water, so I was up and walking quite a few times to (literally) flush it all out. I had more Benadryl in my post reaction drip than I could manage for coherence, so I wasn't really able to read. WIFI was strong, and I mainly streamed TV, surfed the web, and took a short nap. The blankets really are as crappy as everyone says, so next time I will bring my own. (Like LillianGish I'm taking lots of notes so I can remember what worked for the next cycle.) I opted out of the cold mittens and socks based on some conversations with the PA and a friend that is a MO. For my course, it didn't seem necessary to add an additional discomfort to the pile. (They are now property of Husband for his plantar fasciitis - multipurpose!) Outside the reaction, I had a couple moments of general discomfort, but totally tolerable. My appetite has noticeably changed, not sure if it's mental or physical. Not that I can't eat or anything, but previously delightful foods (truffle potato chips and fancy sandwiches) did not delight as they once did. But I know I need to get the protein in, so I'm treating it like medication and something I've just got to do. My AM coffee is a little more bitter than usual, and I've had some constipation (sorry if that's TMI), but I'm trying to get ahead of that with Swiss Kriss. My memory already seems to have turned into Dory from Finding Nemo, but I'm hoping that's stress related and temporary.
I've got my neulasta shot today, which I'm kind of nervous about since it can cause bone pain in flat bones, especially for women my age. I can't seem to find a credible source to describe bone pain and what to expect, but I suppose I will find out if it comes my way. I'm on Claritin already and ready to deploy whatever OTC or Rx pain meds I need if I happen to have that SE.
I ordered my chemodiva wig today with my hair clippings (a kind gift from my coworkers), and have figured out that wine glass pens are great water bottle markers to track refills of my trusty RTIC mug. (I might as well use them for something during this time!)
Hugs and wishes for minimal and tolerable side effects for all!
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Ok gosh, day 12 here and my hair is abandoning ship! Rapidly!
Breathing. Finding calm. Making plan to shave my head. Just hair......just hair......ohmmmmmm
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@LillianGish - You've got this! Put on a hat, get some fresh air, and decide when and what YOU want to do! (And with whom!)
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Just stopping by to say hello. I’m on the August board. Started chemo in July and am I’m still going! 🤬🤬🤬🤬
You ladies are stronger and braver that you know.
((((((Big hugs to everyone))))))
Jess
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OH LillianGish!!! (((HUGS))) honey. I'm sorry for you I can inky imagine how shocking it is when our lovely mane decides to abandon ship
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Good morning, my beautiful Chemo Warriors!!! Sorry I didn't update last night. My first treatment went perfectly!!!! Absolutely NO issues and I still feel fine this morning. I realize I am loaded up on steroids, so once those are done in the next few days, I am not sure what to expect. I fasted on Wednesday and Thursday to prepare for my first treatment on Friday and had NO NAUSEA at all!!!! I had a small snack last night before bed, fell asleep at 8:00 and feel great this morning. My Neulasta shot is set to go off later today around 4:00, but I'm taking the Claritin to hopefully avoid the bone pain. We shall see. For now, I'm happy to say one treatment down, 5 to go!!!!
I sincerely hope everyone is doing well and think of you ladies often!!!! LillianGish, hugs to you as you embark on the 'baldness' phase of this beast. We are all with you in spirit, cheering you on!!! You are beautiful no matter what!!! Your strength and support of friends/family will get you through this time! Continue to reach out here for support. We've all got each other's backs!!!!
Hope everyone has a wonderful weekend with plenty of rest and no SE's!!!! Love and hugs to all!!!
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Good Morning!
I have only posted a few times, but really enjoy reading all your posts! Feel connected! So I am on day 6 of first cycle of TCHP. By the way the American Cancer Society has a great worksheet that I have been keeping track of my side effects and stuff. Well organized. This morning I feel great! Funny though how hours in the day can change how your body is doing . . . Day 4 and Day 5 was not fun! Diarrhea and just felt like major flu. But did all the recommended stuff to do and felt better by the Day 5 evening. Hopefully over the hump and ready to enjoy the holidays! Does anyone else have a follow up appts a week after infusion? Blood test, oncologist appt and possible fluid infusion on Monday to check that everything ok. And then we are doing a long drive to Colorado so hopefully not too many stops!
Also I had some discomfort and felt like swelling of the throat about 30 min after the on pro neulasta shot was administered. My husband worked me thru some breathing techniques and I felt better, weird. Going to talk to dr about it. Also I can tell when the claritin wears off, so still taking it once a day.
Drinking tons of water and saltines are my new happy hour food! I am interested in food just mild stuff.
I am now interested in everyone's hair journey (like what day some of you notice) since that seems like our next step in this cycle one? I am ready with my wig and scarves. Plan to have my husband shave and I think it will be around Christmas. Terrible timing with grandkids, kids and all the family in town but everyone knows so I will have my new self maybe on Christmas Eve service and dinner out! How is everyone else dealing with this?
Onward!
Cheryl
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Hi to you all,
started my chemo in December. I’m wondering how much dose (in mg) do you get in one round of chemo, and how much time do they “put it in”
Best wishes to all, we can do this
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Hello All,
I just found this thread and wished I had found it earlier. I had my first chemo a week ago. I forgot to take the freaking Claritin for the Nulasta and deeply regretted it. I remembered when the bone pain hit. It was like the worst flu/pain I've ever had. But I survived and won't make that mistake again!!! Slight nausea, probably more from the pain, and today had to take an Imodium for the first time in my life. Some fatigue. Basically, sounds like I'm average here. I have a good friend who is my dentist who I talked with when my mouth started getting tender. She gave me the softest toothbrush ever, some specific toothpaste/dry mouth, a rinse, some gels and some hard "candies" for dry mouth and sensitivity. If anyone has mouth issues, I'm happy to pass along what she told me. She disagreed with my oncologist about rinsing with a salt/soda water mixture.
I cut my hair the same day as my chemo.
Right now, I'm trying to figure out this hair thing. When will it fall out? How am I really going to deal with it?
I've been very upbeat, proactive, open with friends, family and coworkers. But I don't know how I'm going to handle the looks. I'm feeling very anxious but don't want to talk about it with said friends and family.
On the up side, I had a Christmas miracle today! I folded the laundry and every sock had a match. Every. Sock. That never happens.
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Welcome Becky!! Wow, every sock. That is a good omen for you I should think.
Everything you described sounded like my experience. I took Claritan, but I'll take it longer than 4 days next time. I hope you're starting to feel better. Day 8 was a pretty darn good day for me because I felt much better. Hair started falling out day 12 and it takes a couple days.Welcome Beznaranca too! Don't know how many mg's, but I was in the chair 3.5 hours.
Hi Cheryl, I also hope you're feeling better now! I also had a follow up visit with MO a week after treatment. Seemed like mostly just a blood check to make sure white cell counts were high enough.
Thank you OCPeregrina, Nanette, Christine ~ I really appreciated the cyberhugs. I'm ok now. No matter how much I expected the hair loss, it was still a shocker. So, now I'm owning it. Hubby helped me shave it all off. I have some hats, and I am watching You Tube's on tying scarves over my head.
I have three holiday parties to attend this week, and I'll be gosh darned if cancer is going to keep me isolated. So.....A little bit of make up, some pretty earrings....we got this girls!
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Christine1975 - I was interested and glad to hear you're feeling good after doing chemo fasted... I'm starting in Jan but planning to do the same (48 hours before, 24 after). I find fasting pretty tough so really hope it helps!! What treatment are you having?
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Thanks, LillianGish,
Yes, I'm feeling almost "normal" now (day 9 since chemo). It's weird; I have a macabre fascination with my side effects/symptoms. So I'm always thinking "Do I feel this way because of chemo, or do I feel this way because I'm 51?"
Glad to hear your timeline on the hair loss. My kids (21, and 23) are coming home for Christmas and I'm afraid they're going to be right at the beginning or middle of the hair loss process. I know we're supposed to take care of ourselves first, yada, yada, yada, but I'm a mom and a wife and I worry about the impact on my family. I think it's going to be tough on them all and I want to minimize the impact, especially because it's Christmas and our time together is limited.
Beznaranca - I'm doing a 12 week course, 4 chemo treatments of taxotere and cytoxan, and my first treatment lasted about 3.5 - 4 hours. If you get Nuelasta -Don't forget to take the claritin the day before the Neulasta and for 4 days after.
Cherd - I have appointments weekly. This Friday was with the nurse practitioner (She's great!!!) for a blood draw and to see how I'm doing. Next Friday will be with the nurse, again, a blood draw. The next Friday with the Oncologist (I'm assuming more vampiric activity) then the next one chemo again. I agree, doing this through the Holidays stinks, but I doubt it would "smell" any better any other time of year. . .
General random thoughts: Other things that have helped me: Walking. Last Christmas we rescued a dog. In January I started Nutrisystem because I was obese and didn't want to die (a bit of irony here). Since then, I've lost 92 lbs and walk an average of 4 miles with the dog every morning. I've tried to keep that up this last week after chemo and it actually helped, even during the bad bone pain. I only did 3 miles a couple of mornings, my pace slowed down significantly. But I did it, despite the massive headaches, the fatigue, the bone pain and the gas cramping. I always felt better about halfway through and after. So I highly recommend walking through it if you can.
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Aha! I'm starting to make sense of all these abbreviations are hard for me to remember lol
Anyhow, I go every week for chemo. I just a letter in the mail from BC/BS and it states exactly how much they are willing to pay for up to 18 weeks (luckily I'm only getting 12 weekly treatments). It also stated how much Herceptin and Taxol the Dr's office is to administer to me weekly. Amazing how documented all of this is.
I was considering the fasting but since I go weekly DH &I discussed it and that only lets me eat 3 days a cycle and that won't work. We're too worried that with me being a type 2 non-insulin diabetic (4 years now) & my immunity will go down the drain. But for those of you who can do the fast because your cycle is different I'm praying for you.
As far as my SE's go so far this week is good. The day of treatment leaves me exhausted but the 2nd & 3rd days were pretty good. Diarrhea 'threatens' but never follows through to the point that I need the Imodium.... yet. We've been helping my SIL & her daughter & granddaughters move into a new house for the past 5 weeks and yesterday was the BIG day of clean-out. Since I used to own a small housekeeping business so I got to do the deep clean and believe me it's all caught up to me this morning. I guess at almost 56 I'm getting to the point where chasing dust bunnies with a broom & dust pan & a floor vac followed up by mopping ALL those rooms (4 bedrooms, Den, Loft, Dining Room, Living room & Kitchen) and then 2 large bathrooms is more than I should have attempted on my 2nd week of treatment and all in 1 day. Oh did I mention it had stairs??? So lesson learned because TODAY when we go back down there I'm staying at the new house ON the couch with my poor tooties UP!! OMG I'm so very sore and DH told me IF I dare lift anything other than my purse with my O &P pills in it and my books he's going to personally escort me to the couch lol.
I do have to say thought DH is being really helpful and surprises me daily. The 1st week he was befuddled as to my SE but I think he's on that learning curve too. This week he's been more helpful (8
I'm glad my family (DH, my 3 children and the 2 youngest grandchildren) to include my SIL and her family are genuinely concerned, over-whelmed and compassionate about this nasty diagnosis. The diagnosis that happens to 'other' people who we don't really know that well......you know what I mean..... My dear Dad (he's 78 3/4) is having a hard time with this though. My mom was diagnosed earlier this summer with Dementia and his heart is broken. He's NOT ready to be a caregiver and is so saddened to have Mom lose so much of 'who' she was 1 year ago. They've been married for 21 years and Dementia like BC was NEVER in the cards......so we thought.
Seems though ladies a lot of our 'testings' during treatment are the same. I get a weekly CBC to make sure I can have my treatments. I see my oncologist every 3rd week.
HE (the oncologist) on my visit with him this past week let me 'know' that I'm not 'doing' things the 'normal' way. HE said it is traditional to have mastectomy 1st then chemo then reconstruction. But you want reconstruction at your mastectomy so I had to devise a different plan. I looked at him and said, "You all told me I COULD CHOOSE how I wanted to do treatment! Who wants to have 2 breast surgeries?? I feel it's in MY best interest to have ONLY 1 SURGERY!!" Truth be told he HATES smoking and I'm working on quitting so I can have the reconstruction at the time of my mastectomies (I've decided to have the one killing me taken off and her sister as well.) Heck God gave them to me as a matched pair so BC isn't going to change that fact. I'll just have better FIRMER non-drooping boobies by next summer!!
Anyhow sorry for rambling. But it sure is great to talk to other women who are going through what I'm going through and know that y'all "get" it.
Have a great Sunday. I've gotta go get dressed as SIL#2 is taking us all out to Red Lobster for our annual Christmas Dinner!! I'll eat something yummy just not all of it because the poor tummy can't handle 'full' meals any more (thank you chemo )8 )
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Thank you Nanette, for the preview.
I did not sleep well, because a few pills got missed last night. Off to bed to play catchup.
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Hi Everyone!! Hope you are doing well.
Becky...you made me laugh about the socks! I just was folding laundry and complaining about missing socks. I have a bag of "singles" and don't know where their partners are!! Also I did take the Claritan (they kept me on it for 10 days) and still got back spasms..OUCH! But the Neulasta did keep my blood count high that I got the okay to go to Zumba classes (cant do anything in the gym-its too germy).
Nanette..You talk about learning abbreviations-think of the education we got the last couple of months (one which we would rather not have). We learned vocabulary, about the body and lots of different meds and their side effects!
anxiouslady… my next treatment is also 12/26 ...I am every three weeks but with xmas it will be 3 1/2 weeks this time. At least this round we know more of what we are getting into.
Christine...Hope you are having an easy day today!! Remember if you want to sleep all day do it...give into what your body needs/wants.
Becky....92 pounds!!! That's impressive! I follow WW but I have been eating so many carbs recently that I put on a few pounds. I need to watch myself before it gets out of control!
Marnie...the steroids gave me hiccups for 2 1/2 hrs non stop on the first night. Dr is cutting dosage for next treatment
So my hair starting falling out Thursday, on Friday I cut it very short, and now its falling out in clumps. What surprised me is the scalp pain...I expected tingling but not pain. Every day of this journey is something new!!
Be Well everyone!
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Flower, sorry to hear about the scalp pain. That's just adding insult to injury!
I had another fun day in chemo land. Walked the dog for our 4 miles. It's sunny, I'm feeling good. Shower, putting on makeup to go to church. Nose starts bleeding. Ok, not my first nosebleed and it's been cold and dry so, no big deal. Off and on from 10 am to 4 pm it continues light bleeding. Got my nurse practitioner on phone and we try a couple of things. Nope, drip, drip, drip. So I'm off to the ER. Where of course, it stops bleeding while I'm waiting in the little cold room. Do blood draws. Cauterize the nose in two places. CBC all normal. A waste of time for a stinking nosebleed. To top it all off, I was supposed to go to a Mom's party at a friend's for food and drinks and socializing. But in chemo land, a simple nosebleed is cause for a trip to the ER.
Sorry, just grumpy.
And my nose hurts.
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BeckyJL, I have had 3 small nosebleeds this week. Can't remember ever in my life having one, so although it is dry here as well, I do think it is a symptom.
Flower, my hair has thinned out the last few days, no noticable clumps, but a noticable bald spot happening on the top of my head, and I had pain like I had worn a hat too long or had my part parted wrong. It came as a surprise to me too that my head was sore.
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Morning Warriors!
Today is starting well - I feel fine and the dog behaved on our walk this morning.
While thinking about losing my hair, I told myself "It either is or isn't going to fall out. And it either is or isn't going to start today so quit obsessing over it, Bec. There are more pleasant things to thing about." So as I sipped my coffee, which no longer actually tastes like coffee, lol, I thought about all the things I am looking forward to over the rest of this month. Then I decided to try and pick the one thing I'm looking forward to the most. It was DIFFICULT because I actually have a lot of nice, wonderful things to look forward to in the next few weeks.
Which is a long-winded way of asking - What are you looking forward to the most in the next few weeks? Anyone want to play?
Me - we have a lot of family traditions so it was hard to pick. But here goes. Christmas Eve dinner. After we go to a Christmas Eve service, we come home, just hubby and son and daughter, and we have a fondue dinner. Fancy cheese dip, and oil with lots of things to dip, several sauces, some tempura for some of them and of course, wine. It's an active meal, it takes a long time, we talk, we laugh and there are no phones or tablets anywhere in sight. Then we retire, fed in the body and in the heart. That's what I'm going to focus on today.
Hope you all have a good day too.
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