Starting Chemo April 2020
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Hello Ladies
I’ve read your posts countless times for guidance and hope that I can get through this unexpected journey. I haven’t posted much because I am struggling with the diagnosis and don’t want to be a drag to everyone’s countless stories of courage and perseverance.
Today they placed the port and for first time I broke down in uncontrollable tears. It hit me hard. I will be starting chemo tomorrow and I honestly don’t know how I’m going to cope. The port alone is causing me a great deal of pain so how can I deal with the side effects of chemo ? I want to talk to my oncologist about my struggles but don’t know where to even begin. My anxiety level is through the roof!!! I feel so weak physically and mentally that I don’t know if I can go through this. On top of all that, the area around the port is getting red and still very painful. Is this an indication of infection?
Any advice on how to prepare for the first day? What should I take with me especially now that they are not allowing anyone other than the patient into the building.
Any advice would be appr
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Bazcla -
I'm so sorry that you're struggling today and feeling so scared and alone. It's scary! Really scary. But you are stronger than you think - we all are. The port was painful, for sure. I'm 3 weeks out from having it and I hate it - but I also love it. At least for infusion day. It definitely makes everything easier. I had my first chemo 2 days after my port placement - and it was still really sore. I made sure the nurses knew that it was brand new, and they took extra care to be gentle. Hopefully, your Oncologist gave you some lidocaine cream to put on it - that also really helps if you do that ahead of time. I came armed with questions for my oncologist - and I also was able to talk to a nurse for an hour the week before chemo. I would ask the office if they have some sort of nurse advocate that can answer all your questions and explain everything - being informed about everything makes me feel like I'm in control, not the cancer. And for me, that's huge. I was really anxious for my first chemo also, but the chemo itself went smoothly. I'm not going to sugar coat side effects for you - it's real and it's hard. But it's also manageable. And you have this whole group to help you through - we have all started in that last couple of weeks, and are here to answer your questions and help you with resources. For chemo day, I bring books, my phone, a charger, a cooler with drinks, anything you might want to eat, etc. They won't have anything there for you. I also bring my own pillow and blanket in case I want them. The first day will be long, because they do everything as a slower pace to make sure you don't have any reactions. After that, it's not as long of a day. Anything that will make you comfortable and pass the time.
Keep us posted - we will all be thinking of you tomorrow. You can do this!
Kris
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Bazcla,
My recommendation would be to get in contact with your onco team and/ or the interventional radiologist team if you feel you need to. I would expect you would have some discomfort after the placement and I'm sure your discharge instructions said what to do to make yourself more comfortable. In my case I was told to take Tylenol and use ice packs (not directly on the skin of course).
THIS IS OVERWHELMING! Don't be surprised! We are all on the world's biggest roller coaster! I know for me, I'm not that brave! I'm improvising and leaning all over people like this great group for support!
What did I bring for my first day of chemo: a couple of crossword puzzles and my cell. I found my center provides everything else I could possibly need and they are very attentive. The actual chemo is pretty quick for me: only about 2.5 hours and so I don't have to deal with a lot of hours and there is a lot of activity around and TVs to watch if I want. I spend a lot of time getting advice from my chemo nurse.
The chemo teams are the best and will help you face this as comfortably as possible.
I found the actual chemo via the port very easy so far. And sometimes I know that they will insert them with the intent to use them right away. They do take maybe one, two weeks or so to heal up so that you don't notice them as much or if at all.
I will keep you in heart and mind tonight and tomorrow and hope you rest well...
Allie
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Bazcla- I'm sorry your having such a hard time with this, it's very normal and expected. The port likely has more redness as it's still new. If it becomes really hot feeling and the pain becomes worse please contact your doctor!! I'm about 3 weeks out from placement and when the area was healing using ice packs helped wth the pain in addition to ibuprofen. I agree with the other ladies to try and speak with the oncology nurse about what to expect. They are an amazing asset to you! Each week I bring a blanket, water, a snack, a book, and my phone. The centers usually have plenty for drinks and of course blankets, though usually not as comfy as a personal one. This is sadly my 2nd time around so if you have any questions you are more then welcome to send me a private message and I'll do my best to help.
I hope you ladies are doing good and side effects are minimal!! Keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Bazcla.....you cry all the tears you need to...all...of...them! I know I have cried...cried over the loss of control, cried over the loss of what will be...loss of hair and boobs...and who knows what else, cried over how this will impact my relationships with my hubby and with my kiddos, cried over the unknown with each new treatment, so cry all the tears you need and then do it again! Crying doesn’t mean you aren’t handling things well...I think of my tears as a way to process and move forward, because going backwards isn’t an option. Let out your stressors here...we might not be dealing with the exact same things, but we are all walking a similar path!
Praying that your first day of chemo is blissfully boring....no side effects of any kind.
Erin
PS...my eyes were welling with tears when I had to walk through to the chemo room for the first time...cry those tears!💗
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Allí & Kris
Thank you! The struggle is real but knowing I can come back to this group and seek advice and listen to stories of courage throughout treatment has given me a little hope that I can get through this chapter of my life.
I called my care team and the surgical doctor called back to advice about what to watch for incase of infection and what protocol to follow. It was nice hearing from him personally. I didn’t get to meet him in the surgical room because I was already partially out due to anesthesia but I did hear him sing while he was doing procedure. I asked if it was him singing and he broke out laughing and said, “I was only humming”. Made me smile.
I will start getting my bag together this evening with all the items you have suggested. Thank you once again!
Claud
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Katie and Erin
Thank you ! I will take your advice to heart and,god willing, I will conquer my first session tomorrow and all the nasty side effects that come with it.❤️❤️❤️
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Claud, I am so glad you got in touch with dr. We will all be with you in spirit tomorrow to wish you well. Love the note about dr. singing!
Allie
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Claud- you've got this!! You do what you need to do to get through this!! Cry, scream, punch pillows, throw pillows... whatever we certainly won't judge you but cheer you on!! Take deep breaths while your going through things and know you are a very strong women and you will get through this and whatever side effects you may have! Sending thoughts and hugs for you!!
Lol about your humming doctor and awesome he personally called and talked to you!!
~Katie💗
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Claud,
I completely understand how you feel. Breast cancer came out of left field for me. It really doesn’t run in my family, and I had a clear mammogram six months ago. (I turned 40 so that’s why I got the mammogram.) However, at the beginning of this COViD mess, I inadvertently found a lump in my right breast and here I am a few weeks later.
I’ve only been through one round of chemo, but I just sat in the chair and cried while they were getting ready to get some blood for labs. A couple of nurses rallied around me to keep me going. You might consider asking for the doctor to give you something for nerves during the infusion. Mine gave me Ativan and I think it helped.
I’m still sore from my surgery, too. I had a port put in my left collarbone area and the doctor removed five lymph nodes from my right armpit, so I got hit on both sides. I can take ibuprofen, but it really doesn’t help me that much. I’m getting better- slowly but surely. Still can’t sleep on either side.
Please know that no one here is going to look at you as a Debbie Downer if you’re having a bad day. We’re here to support one another and beat this thing. I will say this- as scary as cancer can be, during the past few weeks, I’ve had some of the most calm and peaceful moments of my life just communing with God and reading uplifting messages from family and friends. I’ve been overwhelmed with the support that I’ve been given and it’s made me more appreciative than I ever thought possible. I still have my pity parties, but you are about to find a level of strength within yourself that you didn’t know was possible.
This group has been incredibly kind and resourceful to me. You couldn’t be in better online hands! ❤️
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Hi Claud — I’m walking in holding hands with you tomorrow. It essentially is my first time too. I don’t know what the place looks or smells like, know none of the people, if the chairs are comfy or lumpy, if it has the good kind of ice chips — but we both will when we go to sleep tomorrow night.
God gifted us with the magnificent women in our April community. As you try to sleep tonight, feel the strength of the kind and sage thoughts they’ve shared with you. I will be.
Tomorrow, If you get lonely or scared, put your hand on your cheek and you’ll feel the BIG hug and kiss I’m blowing you from Texas ... and always look for God’s rainbow. It’s always there
🌈
j
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hog co-pilot - I will definitely ask for an anxiety pill tomorrow. I’m trying to remain strong but I’m still having some nerve wrecking moments. I will keep praying that God will get us through these difficult times.
By His Grace Twice - I too am from Texas. I actually drove 5 hours to seek better treatment in Houston. God hear our prayers that tomorrow will be a good day for all of us.
Thank you ladies for all the encouraging messages ❤️❤️
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Can you add me to this group? My first treatment was April 24. Getting ready for the second treatment on Friday. So thankful for everyone sharing.
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Good luck tomorrow J and Claud! We'll be in your pocket if you need us!
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Smitty- welcome to the April group!! How was your first session? Hopefully you didn't have too many side effects!!
J and Claud- good luck with your runs tomorrow!!
I hope everyone is having a good week and keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Big shout out to Justyne- it’s so great to hear from you again AND see your pic! Glad you‘ve been doing ok all this time. By the way, I also had a rash on both hands, as well as my ears (weird), and the nurses said it was some allergic reaction to something... but, like, 3 of us here in this small group had it so I feel like it’s something more specific and why don’t the doctors know about it??
Welcome to Claud (bazcla) and Smitty! I’ll add both of you to our Roll Call list tomorrow.
Claud: Wishing you all the best for tomorrow! Everything you’re feeling, we all share those same thoughts, fears and questions here in this group, and we welcome you to let it all out whenever you need to.
You asked about side effects: Hey, no need to stress about them because they definitely don’t happen all at once. Chemo is an exercise in taking things one day at a time (or one hour at a time!). Every day, you wake up and see how you feel. Maybe something new is going on with your body, maybe not. Maybe it changes throughout the day, maybe not. Since it’s impossible to predict and since every person is different, just address each thing as it comes. One thing at a time. You can do that! You can definitely handle this. I believe you can win the big cancer battle just by making it through each day and winning these little battles. And we’re all on your side, fighting next to you, along with support from your family, friends, doctors and care team! I’m so, so excited for you to have your first day of chemo tomorrow! Good luck! We will all be thinking of you and cheering you on!
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Claud,
I’m just going my first week post chemo too, so I especially want to say hi and welcome to the group. Everyone has been so amazing and helpful. I felt pretty good after chemo and on Day #2, but Day #3 wasn’t so great. I felt feverish and tired, like I had the flu. Today was better, still a little weird and tired. But I took a Tylenol this morning and it really really helped. I’ve trying to eat every few hours and drink a lot a water. Also helps. And walking outside is a real energy booster, and it clears my head. I’m not sure what’s going to happen next. Evidently, days 3-8 are the worst, and I haven’t gotten there yet. But if they are like #3 and 4, I’ll make it.
Maybe you’ll be lucky and your cancer center will feed you lunch. Mine did. We had soup and sandwiches, cookies and an apple. It was totally unexpected and very welcome. Naturally I got the soup all over my face mask. I brought two thankfully! I had no idea what to expect either, so I brought a cooler full of stuff and a blanket etc. with me. They gave me a heated blanket right off. It was so lovely! So next time, I can bring one duffle bag instead of two. I did bring my iPad and kindle. Used the iPad, and not the kindle. I also had my knitting because it’s like meditation, which I totally need. Next time, I might try to nap. It’s a big room with a lot going on, though, so probably not in the cards.
Hope your day went well and tomorrow you have a lovely, up day.
Thinking of you!
Nan
PS - what drugs are you getting? I’m getting Taxotere and Cytoxin 4 times, 3 weeks apart.
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Hello Ladies,
Day after Round # 2 ~ Feeling pretty great at the moment. The Neulasta Pro goes off at 5:30 p.m. (in about an hour and a half) and based on the last time, that is the one two punch. It is a cool little thing they attach to my arm and it I can definitely feel the infusion and it last for about 45 minutes. It did create bone pain for about 3 days but can be handled with over the counter pain relievers. It is affecting my bone marrow which in turn makes all those white blood cells so its a good thing !! Saw my main Oncologist so that was a treat. He said right away you need an antibiotic for my acne issues. Minocycline 100 mg twice a day. It already looks even better still. The clindamycin gel was doing a good job but now even better. I was at the center from 9-3. Sucking on those ice chips with a mask was a full time job. I'm also doing the water/salt/baking soda swish every hour on the hour this time and hoping to have no mouth issues this time. Fingers crossed. I did do the icing for feet and hands so we shall see how that goes.
My issue was coming home from such a big day having to be drawn into a family conversation that was to say the least bad timing. Yesterday was all about ME. And I have to stand up for that !! Timing is everything and it was so unintentional and apologies have been made but at the time all I could do was put my walking shoes on and go take a long walk and blow off some steam. Love and blessed with a wonderful family. My 2 daughters (God bless them) are married and on their own so my son and husband are my housemates. Men .... I'm out numbered. I think sometimes our family doesn't act the exact way we need them to and the moment we need them to. And as women, we are always putting every one else's needs before our own. This period in our life, we have to put ourselves first !! Our health and our lives depend on it. Luckily I messaged two of our members and that was just a nice way to vent and their responses were just what I needed to hear. Thank You to them. This group is our safety net and I am blessed that I decided to put myself out there and join and now to really participate I am realizing how healing it is to know we are all in this together at the very same time. I have found answers from women that are experiencing the same thing. Know so much more now than when I started. So thankful for all of you !!
Allie, glad to hear from you and that you now have 2 down as well !!
Welcome to our new sisters .... we are the April 2020 group
)Debra
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Welcome Smitty!
Justyne- Hey! I also had a rash on both hands. My MO prescribed dexamethasone for the day before, of, and after chemo but he prescribed way more than I'll need. I know that dexa works for skin problems so I took it for 2 days and it cleared the rash right up!
Debra- I definitely feel what you say about our families not acting the way we need them to when we need them to. Sometimes I could use a little more than I get from my husband and family. At the same time, I shouldn't complain because at least I have some support. Hang in there! Hope your side effects stay minimal!
Tomorrow is chemo #2 for me. I'm anxious but I feel more prepared this time. I know what to expect. I have my miralax, immodium, nausea meds, glutamine, protein, crackers, bottled water, and taking my dexa. Wow, all the meds on top of the meds they give with the chemo. It's so crazy.
I went to the store for the first time in 3 weeks today. I found a ton of dollar scarves at the Dollar Tree. If anybody's looking.
Kelly
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Good luck tomorrow, Kelly! Sounds like you're on top of this. And being prepared and in control definitely helps a lot!
I understand the anxiety. When they did my chemo "education" on the day of my first infusion, I kept stopping the nurse saying, wait! what? What do you mean, ruptured spleen? etc etc. So now once the drugs are in my body, I feel as though I'm waiting for a grand piano to fall out of a second story window and squash me. So far, I've been okay (no deadly stuff), but what about next time? Never knew I was such a nervous person. My MO prescribed Lexapro for the anxiety a couple of weeks back. I should have started it right away, but I kept putting it off because, you know, I felt fine and I'm brave - blah blah. But when I went into my first chemo, my blood pressure went astronomical. So I started taking the Lexapro when I got home. It takes a little while to work, but I guess I need the help to avoid the piano.
I'll be thinking of you tomorrow and sending good vibes ~
Nan
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Thanks for the vibes Nan! I was prescribed Xanax when I was first diagnosed for when my anxiety gets me. Works fast. I never take it more than once a day though as I'm scared to get addicted. I have to say though, there's less anxiety with chemo #2.
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Kelly - good luck tomorrow. You've got this!
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Nan,
Love your update!
I can relate.
Allie
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Claud — so hope your first infusion went as well as mine did today! I had an unexpected and delightful surprise. Looking out the window of the infusion clinic I could see The Texas Star and the fairgrounds. I go every year with a big group of family and friends. Something extra to look forward to as a reward for getting to the end of chemo.
All — What a difference ... the Herceptin Hamsters defeat the Kanjinti Mice. Thank you for being in my corner. Only side effect is a totally stopped up nose. Started a few minutes after the infusion finished and still is completely blocked. Weird, but I'll take this any day.
Kelley and Smitty1963 — hope tomorrow goes well.
🌈
j
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I’ve missed so much the past couple of days. Hope all of you wonderful ladies are doing well.
Debra...so sorry you had a rough day yesterday. My husband is wonderful and he’s a man so he wants to fix things. My breast cancer can’t be fixed so that’s hard for him and it’s hard for me too. I have to remind myself that sometimes people can’t be what I need them to be and that’s not about me it’s their limitations. Taking a walk is always a good way to clear my head too. Sending you ❤️.
Claud...your post touched me because I feel like the message is you are a warrior, kick cancers ass, you are bad ass you got this. Sometimes that stuff makes me want to scream. I’m not a warrior..I’m a girl who got diagnosed with cancer and is doing what I have to so I don’t die. Lol! No one wants to hear that. I feel sometimes I have to be positive for everyone else. I was on the verge of tears from diagnosis to my first chemo. All the unknown was so stressful. Then I felt good...chemo started we were moving along. I bawled in the parking lot of the plastic surgeon. He was wonderful but it hit me that chemo is just step 1 and once I conquered that I still had surgery,reconstruction and probably radiation....jeez. I had to step back an remind myself let’s get through chemo and then worry about the next step. I cried yesterday in the chemo chair because twice now my port doesn’t give blood return and my infusion has been extended to put meds in the port to loosen up the clog. What I’m trying to say is feel what you need to feel and don’t apologize. This sucks and crying is okay. Usually after a good cry I can pick up and move on. I think covid makes this harder because so much of what we are doing is alone and there isn’t opportunity to pla fun. I hope today went well. What chemo are you doing? I’m on my 6th weekly taxol and haven’t really had any side effects so you never know how it will go.
Sorry for the book😃 I hope all of you are doing well and giving yourselves plenty of grace as we navigate this ❤️
Heather
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Kelly - I hope everything goes well tomorrow. I'm on Day 7 of Round 2, and so far I have been able to control the worst of the intestinal symptoms. The fatigue was a real thing again this week (mostly days 3 - 6) but I feel like I'm starting to come out of it. So overall, it was better knowing what to expect and being about to get ahead of things this time.
Claud - really hoping everything went well. Check in if you can.
Debra - I get the Neulasta arm-thingy also! It's pretty cool.
Heather - Just sending you some love. I totally get the "step 1" stuff - I was talking with a friend about "what's next" and even though there is mostly a plan, there are still some unknowns and I wish I could say "this, this, this, and this" and then we're done. And you nailed it - just doing what I need to do to live! Aren't we all.
Kris
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Hello Ladies
Thank you once again for your encouraging words!! I had a call from a social worker today and I mentioned this wonderful supportive group of courageous woman that is helping me find strength to cope with this unexpected journey.
Unfortunately I didn’t get my first infusion today. I met with my oncologist and upon further evaluation from my surgical doctor, I developed what appears to be a hematoma in the area of the port. He said he had never seen that happen before but to monitor it just in case it got bigger. I was so worried last night that i made a phone call to the Radiologist on call. They suggested I go to ER but I waited for the morning being that it was already close to 2AM.
Kelly - I’m delighted to hear that your first infusion went well. Focus on that Texas Star and those fairgrounds. Soon you will be able to enjoy that again.
Heather - Hopefully one day we will cry tears of joy. I hope you have better luck with your port next time. I’m going to be doing 4 sessions of A//C every two weeks and then 12 of paclitaxel. Nurse gave me informative packet today so fixing to start reading.
Claud
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Claud...I’m doing the same regimen in the opposite order. I’m doing the taxol first then the AC. I will be curious to hear about how the AC goes for you and I can share my experience with taxol. I hope you heal up and are able to get started. It does feel good to get moving
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Hey all! I'm alive and checking in a full week after my 1st infusion. I'll follow-up with as many people as I can in a 2nd post.
Infusion day itself on 4/30 and the day after went exceptionally well. No nausea, although lots of taste issues those first few days.
The days after that were the ones that threw me for a loop. I was feverish (101-102) on day 3 which sent me to the local ER, specifically the outdoor triage tent due to a shortage of rooms, for 5 hours. WBC count ok...no flu or covid. No infections, but prescribed a prophylactic antibiotics (levaquin) for 7 days.
I then had incredible lower back pain on day 6 that wouldn't resolve with OTC meds. The pain took my breath away...I thought I was in labor again! This time, I went to the ER at my usual hospital (upgrade...indoors and private room). Labs drawn and I'm neutropenic, but thankfully after an MRI of my back, no infection 🙌 Followed up the next day with my doc for a better pain management plan.
Days 7 and 8 - much better shape. I believe I've turned a corner. Now to work on getting those white blood cells back up in time for the next round in 2 weeks time. 💯
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And here's my follow-up! Love to all!
Claude - I'm so glad you've reached out to us and a social worker to vent and to seek advice and opinions. I think that's incredibly brave and so important. I'm so sorry your infusion didn't go as planned, but good for you for trusting your gut and getting in touch with your doc on something that didn't feel right.
Kelly - How did chemo #2 go for you? Hoping for the best! BTW, the Xanax sounds like such a relief. I was prescribed Ativan and happily take it on the days surrounding the actual infusion. I think it helps bring me down a notch and helps with sleeplessness from the steroids. I could probably use one right about now as I'm typing this in the middle of the night (can't sleep for some weird reason).
Debra - congrats with getting #2 done and dusted! Sorry I couldn't get back to you sooner on the ice packs - I got a little sidetracked there 😂. They are the CryoMax cold packs from Amazon. I used two sets during my infusion (brought a cooler to keep the 2nd set cold). For my feet, I use NatraCure cold therapy socks (available on their website). I hear you re: putting yourself first. I called in for backup because I too am in a house full of men/boys who have become a little too dependent on me. My aunt is here with me now supporting me aka cooking 3 meals a day, laundry, looking after my boys, and most importantly helping me to relax/laugh. Also, tx for sharing your experience re antibiotics and acne. I'm glad it's working for you. BTW, I too am fascinated by the Neulasta self injecting device. Love not having to go back to the clinic the 2nd day. Plus, I feel bionic wearing it (I even have video of myself as it was injecting me exactly 27 hours after infusion - pretty cool tech!)
Nan - look at you handling your first TC infusion like a champ! I feel like a right diva compared to you 😜 I'm so happy that your first session went off (mostly) without a hitch. Plus, free food - what a kind gesture on the part of your center!, Knitting sounds like a very relaxing way to pass the time and I hope you can nap the next time around (I have been loving my naps lately).
Smitty - welcome! Keep us posted on how you're feeling!
Justyne - Happy 30th Birthday! Sending you lots of birthday wishes! Looking like a champ in your pic for round 5 🥊 I'm right there with ya on the walks - before chemo it was workouts and 2 walks a day for me. Since chemo, I've only managed one daily walk but it's something I've come to rely on and look forward to. The fresh air alone is healing for me.
Les - thank you for the magnesium citrate tip. Miralax has been working for me (started before each infusion). I hear you on the swings - I feel as though just when you're getting over one side effect another one comes at ya. Chemo (and the pandemic in general) have really forced me to just take things day by day. That seems to help and I hope you're able to cope too. PS. Had to laugh when I read about your snoring neighbor! Looks like she got some rest! Perhaps ear buds and the Calm app or some spa music might help you next time to tune out your neighbors? I'm keeping my fingers crossed for a private room next time, but no guarantees.
Pjb61 - wishing you strength and good taste buds for the next round on the 11th. You've got this!
Allie - congrats on getting your latest AC infusion done and over with. Miralax worked well for me. Love that you're getting daily exercise in - so helpful and important. As for food, I would experiment and do what feels best for your body. I'm still on keto and so fewer meals per day actually feels better for me. There's no wrong or right way - you know your body best!
Jess - hurrah on the successful port placement, well aside from the 🤢 and all (I'm so sorry - that sucks). Wishing I had one of those ports right about now. Here I was thinking that 4 infusions wouldn't warrant one, but I could've used one this last week with my multiple ER trips #themoreyouknow 😜How did your latest infusion go? Love your sassy pic complete with flower. Looking great girl!
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