Starting Chemo April 2020
Comments
-
Katie - I hope your stomach cuts you some slack soon. Ugh 😑 I have to say I do have a bit of an advantage with the walking because I walk almost every day and have for a long time. Not that I’ll feel much like it I think in a couple of days. The challenge will help get me off the couch. I hope.... I had my chemo in a big room with gosh about 10 people plus the nurses. I live in an area that only has the one cancer center for a large area with a lot of elderly people so no surprise there. But it was fine. Everyone wore masks, we smiled at each other, I brought my iPad and zoomed in to my knitting group for an hour (with headphone and on mute), and no one seemed to mind. People came and went. It was diverting if nothing else after not seeing anyone for 6 weeks!
Kris - I 😂 about the Neulasta thing. I was afraid of just that happening, which is why I chose the stomach. It honestly did NOT hurt at all. The nurse was hilarious. She sat there and watch me like a hawk because she said she loves watching people jump when it goes off and seeing their expressions. I didn’t even flinch, so she said I was no fun. I don’t think it’ll be a problem to sleep on my side with it. More that I can’t sleep on my stomach. But it’s on the same side as the port, so if nothing else, that’ll remind me. It’s a little sore even after all this time (I got it at the same time as my breast surgery) and today it’s a little more ouchy than normal. Duct Tape. That’s what we need. My husband’s Cure All for everything.
Allie- thanks so much for the picture review. I’m turning into a selfie nut lately. It’s kind of fun. Although some of them come out so bad I cringe. Hope you’re doing okay today. My daughter got me a huge YETI water bottle for my birthday. It’s awesome. I fill it with ice cubes, put water in it and keep refilling it whenever it gets empty. The ice lasts at least a day. Highly recommend if you’re having trouble drinking enough. 🤗
Nan
0 -
Katie — grateful to hear things going ok so far for Round 2. Hope your tummy settles soon. Next week, maybe they'll let you have chocolate or strawberry instead of your vanilla milkshake.
I've only had one infusion. It was a big room full of recliners. (Wish it was a private space. So embarrassing ... I spent 60 plus of the 90 minutes throwing up in front of a bunch of strangers.) Next one is scheduled for Thursday. I don't know what it looks like because I changed MO.
Nan — happy Round 1 went well. Now you know what to expect for the infusion. Love your glasses.
Kris — your run in with the door jam. So like something I'd do.
All — best wishes for everything going on with each of you. Confess I'm having trouble keeping up with everyone's individual status but AM THRILLED we have so much participation. I'm going to begin adding a rainbow to the end of each post so y'all will be reminded I'm blowing a big hug and kiss from Texas with every post. 🌈
j
0 -
Nan- lol yours will hit at the end of the week when I'll be feeling better... I'll hopefully catch up then 🤪. A couple years ago before everything changed I used to walk 5-6 miles daily. I would like to get back up to that.
I wish you all had private rooms!! Im in a small hospital cancer center so very lucky to have the private room!
J- love!! the 🌈! Hugs back towards Texas!! Do you get Taxol or Abraxane?? Abraxane is just paxitaxol that is protein bound. Asking as your sadly also a stage 4. Lol about the milkshake!!
Have a good day with minimal side effects and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
0 -
Katie — I'll do a loading dose of the “real Herceptin" Thursday and follow with Taxol in a couple days. Did first infusion on April 1. Was supposed to be Herceptin, but without disclosing, the MO substituted biosimilar Kanjinti. I had a bad reaction. Have a new MO.
I didn't do anything except surgery when first diagnosed ... other medical issues ... I'll look up the protein bound aspect of Abraxane/Taxol. I don't know what that means.
How are you feeling? Do you have symptoms, pain from your lung mets?
🌈
j
0 -
J- it's unfortunate that they are not able to do both the same day so you don't have to return. I'm not on a targeting medication so don't know the reason for the seperate infusions.
I'm feeling pretty good post surgery surprisingly. I thought I would have more breathing issues as my left lower lobe and a piece of my left upper lobe were removed. I still have an annoying dry cough which from what I've read I'll likely have the rest of my life. I don't really have anymore pain. Prior to removal I had an ongoing pain to my left midsternum.
Are you still receiving radiation?? If so how's that going? Have you had any follow up scans since stage 4 dx??
~Katie 💗
0 -
Katie — I'm sorry you're having the residual post lung surgery problems. Chemo side effects don't speed the healing. Grateful you're feeling as well as you do and 🙏 all will improve the further you go through the process. When will you get your next scans? So proud of you ... walking again in the FitBit challenge with Debra and Nan.
Had two rounds of 15 each radiations. Acetabulum and then lumbar spine. New CT scans Friday revealed multiple 1 cm and bigger new mets in the upper part of my hip and lumbar spine which weren't there six weeks ago. RO and MO need to confer and decide if I do more radiation now or wait to see if tumors shrink with chemo.
It was very successful on the smaller lumbar mets discovered in March and the acetabulum — that met was big — 3" x 5". It's what caused the fracture in September and how I found out about the metastasis. Acetabulum recovery has been outstanding. I walk well now, without crutches or a cane. I'm so grateful.
MO offered to do Taxol and Herceptin together on Thursday. I declined because I had such a bad reaction to the biosimilar. I have some wacko, life threatening allergies. If I do both together and react badly, I won't know which drug is the problem.
I looked up Abraxane. It's a taxane like Taxol. Are you having any neuropathy? Are you icing your hands/feet during the infusions?
I have a chemo class teleconference tomorrow so I'll find out more details. Do you get any preinfusion meds? I've read for Taxol some folks get steroids, Benadryl, and/or Pepcid. I get all three before CTs because I'm deathly allergic to the mineral iodine in the contrast. I literally pass out and go into respiratory failure. I took 150 mg of Prednisone before Friday's CTs — steroids are so hard on bones and I'm already full onset osteoporosis.
🌈
j
0 -
ARmom. I get really sad sometimes too. I think I miss my pre-cancer life. Regular work, going on weekly date night with my hubby, visiting with girlfriends etc. I try to not beat myself up for feeling sad sometimes but I do try to not stay in it for too long. Usually it helps me to remember there are so many strong and amazing people that go thru this. It’s like I try to channel their strength. hope that helps a little. Xox
0 -
I'm on day 13 after my 1st of 4 chemo treatments. I was doing great for a day and a half after chemo and then it hit. I was really struggling with the body aches from the neulasta. I dealt with severe growing pains As a young girl. The best way I can describe the body aches was just like growing pains but in my ankles, knees, hips, and shoulders. I tried the Claritin and Tylenol with no luck. The norco was the only thing that would help. I was toggling back and forth with consolation and diarrhea. Nausea, a weird film in my mouth and pain in my ovaries from starting chemically induced menopause. Oh and some odd sores on the back of my neck. Holy moly. I write it All out and I know it is a lot of yucky stuff but it was all manageable and I know I will get thru this.
Hair is already thinning so I just shaved it. Feels liberating.
Is anyone else going thru chemically induced menopause too? How is it going?
0 -
Nan- OMG first chemo done!! Congrats! Love both pics-- the one of you smiling that you posted earlier, and the hospital one with your colorful glasses and mask! I'm so happy for you that you didn't even feel the needle and that things went well.
Lise, Kelly and Erin- All of your pics are great!!! Erin, your fun pics from chemo and the cute Aloha water bottle made me happy! Lise and Kelly, both of you totally handle the no-hair look so well, for real! I think it's that both of you have beautiful eyes and a nice-shaped head. I finally did it, too... I shaved the other half of my head. I am still getting used to how it looks, but honestly, it feels great. Seriously, everyone should experience once in their life that first shower after shaving your head and how good the water feels!
Kelly- Yes to feeling sad. As Shelly said, I also miss my pre-cancer life. I sometimes feel totally disconnected with my new, no-hair, tumorous, weak, tired, confused, annoyed self. All of that, sometimes in overwhelming combinations! But for me, it doesn't last... I don't let it. I'm too busy focusing on tasks and steps to think about it too long, and that helps me. Like when it's two days after an infusion and I'm starting to not feel great, I distract myself mentally with the things I need to do, like drinking enough fluid every hour, doing laundry, texting my mom or my sisters, etc. Distractions and tasks (and rest! I really do veg out or nap a lot) keep me mentally focused on positive action that I am taking in my fight against cancer. It sounds silly, but every load of laundry I do, I feel accomplished because it's washing away the chemo poison and moving on, and every time I drink so much that I have to pee again, I feel like I'm proud of my contributions to this victory! Yay, me! haha I know it's ridiculous but it does work for me!
Shelly- Even though we're on totally different chemo meds, the growing pains you described are exactly what I feel and where I feel them. Sometimes I can't get comfortable and can't sleep because of them! My oncologist said it might be the pain of the chemo attacking your bone marrow... not sure if that's it, but it was still interesting to think that maybe you could feel pain in your bones and bone marrow. I sometimes take ibuprofen (Advil) at my doctor's suggestion-- it kinda works sometimes-- but honestly, what works best for me is medicinal marijuana taken as edible gummies. <shrug>
Allie- Just a little note to say I'm sorry about your bladder issue and I'm glad it was figured out!
Zarin- Another little note to say hi and that it's great to hear that update from you. Glad you are mostly doing well except for the annoying acne side effect!
Katie- My treatment center is awesome! There are, like, 12 (I think) private-ish rooms. No doors but it's like a tall cubicle, each with a huge window and a little living room setup of a comfy reclining chair and a loveseat-sized couch for visitors (just kidding, we all know that NONE of us get visitors these days). There's also a corner room that is bigger and has spaces for 4 patients, but you are angled in a way that you don't really see each other and it still feels private. We used to have a choice where to sit, but since the pandemic, my treatment center took in another infusion center, as other hospitals are being redistributed, closed or combined in order to deal with COVID-19. So it's a lot busier and I just sit wherever they put me.
...and count me in for the Fitbit group! I will PM you, Katie! Thanks so much, Kris, for that bit you shared about getting up and walking even when you don't feel like it... that was the inspiration that I really needed to hear and I will definitely go out for a walk tomorrow!
j - I'm on Taxol and yes, my premeds include a steroid, Benadryl and Pepcid. I am not icing my hands or feet. I am coming up on my 6th weekly session out of 12. I do have some tingling in my feet and some arthritic like stiffness in my hands, but it's not full-on neuropathy and my doctor is not worried about it.
Port placement: I had my port implanted today, and it went great! Well, except that I was crazy hungry and thirsty from fasting the night before, so when they offered me something after surgery, I immediately scarfed down a turkey sandwich, a fruit cup, and 3 of those little cups of apple juice... then got super nauseated and threw up. They gave me Zofran and had me rest a little longer. After I got home and took a nap, I guess the good drugs (fentanyl, I think) wore off because I woke up feeling like I was hit by a truck! Uggh. Still incredibly sore in the neck area and I'm struggling to find a way to sit/lay/stand and hold my neck without it hurting. Ice packs are again my best friend. But overall, I'm glad I chose to do the port and I'm excited for my next chemo appt on Thursday to see how the access goes! Attached a pic from the recovery room to show off my newly-shaved head. The free fruit cup came with an orchid (so fancy!) and I put it behind my ear for the pic. It actually made me feel a little better... more familiar? more feminine? I don't know, but it worked!
Love all of you and all of our great conversations, tips and support!
0 -
Hey everyone! A friendly reminder that this is a public website where anyone can read our posts and see our photos, even without logging into the breastcancer.org site. So please do not feel pressured to share a pic just because so many of us are comfortable doing so! I know I've said it before, but I want to make sure to say it again for any new people or for anyone not that tech-savvy who might not realize it. Love you all! ~jess
0 -
Jess I love the flower. It looks awesome with your new hair do. Which looks great too. And rocking your new port. I’m so grateful for mine. Makes it so much easier.
First day after chemo. Suns out and feeling okay so walking today with my daughter today.So glad to be a part of this group. You’re inspiring and comforting. Makes this so less frightening.
🤗 Nan
0 -
Jess -
Glad the port placement went well! I'm just past the 3 week mark with mine and all the soreness is gone now. I have a tiny bit of bruising still left, but it doesn't feel like anything. I hate having it in there - totally a mental thing - but I do LOVE it for the infusions. Definitely cannot imagine getting an IV every time.
I agree with you SO much about the distractions from the sadness. I'm not a person who dwells much on negativity - I'm definitely an action person. But it's hard in this. I was so anxious in the beginning, but I find that the more there is a plan and the more I research and understand it, and the more I advocate for myself about what I want, the better I feel. Now, I'm mostly in "get it done" mode. I have worked really hard to assemble a team of people outside of the oncologist to help me navigate some of the side effects in a more natural way, and that's really helping too, because I feel like I'm empowering myself and not just letting the doctors tell me what to do.
All - my infusion center has a couple of private rooms with actual beds, but I've never even seen anyone in there. Mostly it's just a huge room with lots of recliners. They are all spaced out and none face each other, so you don't even feel like you're in there with anyone near you. And the room is up high with lots of glass, so great panoramic view of downtown Atlanta. I don't mind it - I think I would go stir-crazy in a room completely by myself.
Kris
0 -
Morning Glories!
Jess thank you for your responses to all and you look simply marvelous!
A note about Neulasta...my regimen has me starting Claritin about one hour before chemo and then continuing it for three days after.
Blessings and best wishes to all!
This IS an exceptional journey.
Allie
0 -
Allie - when you start the Claritin early, did you also get Benadryl during your chemo infusion? I get my Neulasta shot given 24 hours after chemo so have started taking Claritin the morning of the day after. I was wondering if it would be more effective to start it earlier but since I was getting a bag of Benadryl with the infusion, I wasn't sure if I could mix antihistamines. I get paranoid about stuff like this.
I walk daily and sure wish I could get in on the FitBit challenge. However, my FitBit is an older model and I lost the charger so my family gave me an Apple watch for Christmas. If anyone has an Apple watch and knows how to connect using it, let me know.
0 -
Hi Sherri!
I just checked my drug schedule and actually it is the day of chemo I take my first Claritin, about one hour before chemo starts. I then take it everyday for three more days in the morning. I am pretty sure that I am not being given Benadryl at anytime. The only things mentioned to me that I get in the chemo session are steroids and anti-nausea medicines. I also take the steroids for three days after too.
Allie
0 -
Sherri -
I actually take Claritan every day for allergies anyway, so I have just continued. I only got the Benadryl infusion the first cycle - they did not give it to me again for Round 2 (thankfully!) and I asked my Oncologist and he said that they only do it the first round and not again if you have no issues. However - as a long-time allergy sufferer, it will definitely not hurt you to have both. My son is REALLY allergic to cats, and when we visit my MIL (who has one), he takes a daily Claritan (which is takes anyway for pollen allergies) and then also takes Bendryl as needed if he gets really bad - especially at night. They are designed to be different. Obviously, if you are concerned you should definitely ask the doctor. Hope that helps!
Kris
0 -
Jess- LOVE the picture!! Your looking fantastic! I like you got the flower wth a fruit cup, lol. I will add you on fit bit.
Sherri- the active ingredients in Claritin and Benadryl are not the same so you can take them both without an issue of too much of one med.
Lol gotta love day after treatment....I actually got some good sleep last night which is very different from any other night courtesy of insomnia!
I hope everyone has a great day with minimal side effects and keep up the fight to kick cancer's ass!🥊🥊
~Katie💗
0 -
I've had IBS for some time now but either the Chemo is helping things along or my doctor recommended regimen is helping. I "take" Metamucil wafers (can't hack the liquid stuff) with either pineapple or applesauce for lunch, then take four Senna at bedtime. The doctor recommended two packs of the Metamucil wafers but I've cut back to one pack. It may take a while to get things started. Good luck.
0 -
Day 2 after first chemo session - So far so good. No nausea (taking my Zofran every 8 hours religiously) and the Neulasta On-Pro thingy went off on schedule without a hitch. No itchy rash, no anaphylactic shock. All good. Oh yea, and no ruptured spleen. Gosh, who every comes up with this stuff. It's a miracle we can allow ourself to do this! I have heart palpitations just thinking of it. So I try not to think of it. I've been taking Claritin since right before my first infusion, so I've got my fingers crossed that I won't get the bone pain.
I think of all of you who have gone through this already and thank you for writing it down here. It's so helpful to read your experiences so I know what to expect. Although my anxiety has been through the roof, it would have been even worse without you all. Thank you thank you thank you.
Nan
0 -
if you consider the infusion as Day #1 then I’m on Day #6. I’m feeling like I have bad/good hours instead of bad/good days. I felt bad yesterday but began feeling better yesterday evening. I really thought I was through the rough patch. Then, this morning, I began to feel like I’d been hit by a truck. Still feel that way. Is anyone experiencing these types of swings on a daily basis?
Also, super jealous of those of you who have private rooms for infusions! My infusion center is pretty old; it’s just a rectangular room with several recliners. I was told that it would be possible to sleep during my infusions but that was impossible due to a snoring neighbor. 🤣
While I’m not quite comfortable posting my super short hair pics, I’m super impressed with everyone else’s pics. You all TRULY look beautiful and strong!!
Les
0 -
Loving all the posts and how everyone is coming along in their own way. Everyone has their own sets of challenges and trying to find the best strategies to conquer them is the key. This group is amazing. As we all progress in our treatments we will all experience so many ups and downs. But with all the support and positive vibes around us, we will all get through this and very soon we all will be through this!
Debra - thanks for the info about the acne treatment. I have been prescribed another antibiotic cream which I have just started applying. But it’s so greasy and quite itchy when I have it on. This acne is driving is crazy! Cause with every infusion it is getting worse!
Good luck everyone with their upcoming treatments!
Zarin
0 -
Good morning,
You are all so wonderful!
Love to read your posts!
It's a sisterhood!
God bless you all!
I'm on day five after AC.
Perfect? No. Struggling a bit till with hard stools but will keep chipping away at it.
I drink so much and et am up several times per night to pee. I go to bed super early though...have started on prunes, etc., and have MiraLax and Senakot being delivered today. Have three bunches of fresh broccoli that taste SO delicious and perhaps they will inspire the bowels.
Feel a little "woozy" (tired, a little out of it)...but just off the steroids.
Exercising 15 minutes/day with stretches and cool downs after. NP says: "exercise as much as you can tolerate."
My legs feel a little sore doing it, but I can manage because the long term goal is SO good. I feel empowered at least.
My fond best wishes and blessings to all!
Allie
PS: I am reading now that the broccoli and gas forming foods might not be a good idea until the constipation is resolved...darn...I adore the stuff...will look for other vegetables...
PSS The other thing I'm doing "wrong": not eating more frequent, smaller meals. I tend to eat one huge meal per day...and then two smaller ones...Think one large one could be overwhelming me...
0 -
Les -
I'm also Day 6 today and also feel worse this morning than I did yesterday. It definitely comes and goes. Glad to hear everyone is hanging in there.
Kris
0 -
Allie — in my life before cancer I rarely had constipation. Now pain med causes it. I use an “old time" solution to heartburn and constipation. It's simple baking soda (bicarbonate.) About 1/4 teaspoon to 1/2 tsp in a little water for heartburn — will produce a belch and relief. For constipation — 3/4 teaspoon in water If your pipes aren't moving in an hour, repeat. Go slow on the quantity of baking soda until you find your right amount. It totally will clean your pipes.
I asked yesterday in chemo class about using baking soda for constipation and got the ok.
I don’t like to do this one because i think it tastes nasty, but another “old time" remedy is castor oil in a little orange juice. Works amazingly well and quickly as does baking soda. Again, just don't use too much, it will work too well.
If your budget is getting tight, as we all know how $ having cancer is ... both the baking soda and castor oil are much much less expensive alternatives to Miralax, Sennakot, and other drug store remedies.
🌈
j
0 -
Les, a particular note on your comment about "daily swings"...
Short answer: yes!
It's such a remarkably challenging thing to do cancer treatment and the larger issues having cancer poses - physical and mental. What a war the body is mounting! We must take extra good care of ourselves!
I feel more stable after the second round vs. the first...
I've leaned on a couple of good friends, the onco team and now social work for help/support for both the physical and the mental aspects of this.
My blessings,
Allie
0 -
J,
Thank you! I love having the options!
Allie
0 -
Les, yes to the daily swings! I joked to my husband that I didn't know how I was going to feel from hour to hour! I don't know what regimen you're on but for me, my rough days were on days 3-8. Started feeling much better on Day 9 except for an awful taste in my mouth that lasted until day 13. Thankfully that is gone and I now feel pretty much back to normal. I may tire just a tad easier, but still able to do what I want and need to do without any problems. I go for my second infusion on the 11th so I guess I'll start all over.
0 -
Allie, I’m so thankful that you felt more prepared for the second go-round than the first. Hopefully, I’ll follow in your footsteps.
pjb61, I’ve told my husband the exact same thing! We’re trying to keep a daily journal of how I feel, but it’s hard because how I feel changes from one hour to the next. 🤷🏼♀️
If counting the intrusion day as Day #1, I’m on Day #7. Looking forward to better days! Looks like I’m getting closer.
For those struggling with constipation, you might consider magnesium citrate. I take about 1/4 to 1/2 of the bottle and mix it with water and drink. I have the cherry flavor and it’s really tart, but that’s still better than the Senokot which didn’t work for me and made me nauseous instead. Next time, I’m going to take ARmom4’s advice and try some Miralax on the days leading up to my infusion.
0 -
Jess and All — can’t say thank you enough to you for creating our April forum and to everyone for participating and making it a real community. Like y’all, I can’t see and hug my GrandChuckles, other family, and friends. I miss them desperately.
Y’all are making smaller the hole cancer and Cvirus made in my heart. Forever I will be grateful for your friendship.
🌈
j
0 -
Hey Everyone!
I've been MIA for a bit (celebrated my 30th birthday, working and just trying to stay active). Trying to do daily walks, but the week before (week 4) I had the worst pain ever in my legs I think I have ever had and if I wasn't going through chemo I would have requested to be taken to the hospital. Then this past week (week 5) I had my best week yet. I received a slight rash on both hands that caused me to itch like crazy but oncologist and nurses didn't seem to worried when I mentioned that. I have a lot of hair so it has been coming out in massive clumps, but trying not to shave it quite yet. I've also noticed my face getting extra dry and breaking out (I feel like I am 14 again). Here's a pic from chemo 5 (this past Monday):
Going to stay more active on this because it truly does help to see everyone one here and talk things out! Happy Wednesday!
0
