Starting Chemotherapy March 2018
Comments
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Ordinarybeauty - Invasive ductal BC - triple negative - grade 3 - 3.4cm mass in right breast
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Westcoastga - thank you for sharing - the cancer stuff box is an excellent idea - I am going to make one up too - thanks - so sorry to hear that you and your husband are having to deal with this simultaneously. We can get through this!
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I had my first chemo on Friday last (the 16th). Nausea is non existent so far, little short bouts of diarrhea, tho totally manageable (must have a cast iron digestive system), but the fatigue.....holy moley. I have done almost nothing since coming home on Friday but sleep. I don't feel guilty and since I am retired, it's ok, but does the fatigue ever lessen? I seem to be up for a couple of hours, and then need to get back in bed where I sleep for at least 2-3 hours. I cannot imagine how women with small children do this and for those of you who work, go you, you are better women than me!
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Bonnie, wonderful post. Thank you!!!!
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WestCoast, thanks for the link. Those caps are so cute. I'm ordering two!
Bonnie, thanks for the positive thoughts post. I think a good mindset is essential for our spirit and healing. I'm trying to stay focused on gratitude. It's more challenging in the midst of overwhelm, but there's always something to be grateful for. I called the chemo nurse about persistent low abdominal pain today. They wanted a urine sample to rule out a UTI. At first I thought about waiting til I go for labs tomorrow, but thought better to get it done so I don't have to postpone my chemo if I need rx. I'm grateful for a responsive care team and a 10 minute drive to the hospital. As I groan about getting my port on Friday, I'm thankful there is an alternative to blowing out my veins or increasing the chances of Lymphadema by puncturing the arm where the nodes were taken. That's the gratitude game I try to play every day.
Wishing you all a restful, peaceful night
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Reporting on first chemo today, Taxol/Carboplatin. Just arriving at the building felt like an out-of-body experience since my brain was apparently looking for any possible way to escape. But it really went so much better than expected. I was worried the port wouldn't work right. It worked perfectly. Having just had it put in a few days ago, I was worried it would be painful. It wasn't. Two numbing agents and I didn't feel a thing. I was worried about an allergic reaction. Didn't have one. I was worried I wouldn't be able to endure icing fingers and toes. It was fine. I was worried about walking around with the pole to use the restroom. Easy, peasy. I was even worried they'd run out of ice! They didn't. I had so many worries that didn't happen, I can't even remember them all. The staff impressed me with both their professionalism and warmth. It was interesting to watch the variety of women who were also there for their treatments. Some quite young, slender, and fit. Others the opposite. Tall, short, everything in between. This is an equal opportunity disease.
The only side effect I've noticed so far is to taste. Weird stuff. Distilled water now tastes like rubbish, but RO water tastes lovely. Black pepper now has a kick like jalapeno! Cinnamon also now has a kick, not quite as much as pepper. Salt stings my lips.
I'm finding it quite challenging chugging the recommended amount of water, eating small meals, walking a bunch, and remembering to rinse with baking soda/salt water, etc. But it's only day one. Hopefully, I'll become routine soon.
One odd NON-chemo side effect, though. My doctors wants me to take 30 grams of L-Glutamine powder a day. I started yesterday so I could figure out things to mix it into. After the first dose, I got a headache on one side. Continuing to take it, the headache moved to the other side as well, and has been with me ever since. It's a very mild headache, so I can live with it if I have to. Anyone else having this experience? I've been taking 10 grams at a time. Tomorrow, I'll experiment with taking just 5 grams at a time and see if that helps.
Also got some good news, some bad news. All my scans have now come back showing no metastases and no lymph node involvement. My BRCA test came back negative as well. Bad news is that the PET scan picked up what looks like a big old uterine fibroid. So, have to go for one of those obnoxious too-personal ultrasounds tomorrow. If you've never had one, rejoice. That thing had better be just a fibroid or I'll be back in full doom and gloom mood.
Also, yesterday, went wig shopping. I'm a very small woman, and golly, all the wigs available made me look like I had outrageously big hair. Clownish. Maybe scarves, etc., just make more sense. I'm not trying to hide my diagnosis from anyone.
OK, off to do the rinsing now and more water chugging.
Bonnie, that was an inspiring post! Along similar lines, my NP today said that the two scariest words in the English language are cancer and chemotherapy. Had to agree there. But then I thought, why not simply change the words? So instead of cancer, I'm calling it "a few wonky cells," and instead of chemo, I'm calling it "yew juice" (since Taxol was originally derived from the Pacific Yew tree). I'm just treating a few wonky cells with yew juice. Works for me - at least for today. (Yeah, this is evidence that I'm a silly old rabbit.)
Hugs to all.
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Sillyrabbit,
Yes, yes, yes to your first paragraph! I had all those same fears and things went fine. (Except the port since I get mine this week, and happy to hear yours went well.) Thanks for putting it all so eloquently as I'm sure some newbie will find comfort in it. It's a good reminder that we psych ourselves out too much. Not helpful! I know I tend to prepare for the worst but hope for the best- unless I just freak out. Now I'm worried that the second infusion will be bad since the first was fine. Your post reminds me to justchill-out.
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Oh, yes, Downdoggie, got the set of worries about the second round already emerging. But gosh, still have the rest of this week to get through, and so many women seem to say the side effects hit around day 4 or so. That sounds like it corresponds with when the pre-meds wear off. Such a wealth of things to worry about while I wait for #2.
One of my daughters once sent me a Winnie the Pooh drawing. Piglet asks Pooh, "What if a tree falls on us while we're standing under it"? Winnie answers, "What if it doesn't?" And Piglet is comforted by that thought. I ponder that drawing a lot.
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Holliewood, I'd been warned about fatigue, but it's hard to understand until you experience it. My therapist (who specializes in patients with illnesses) said it is not a fatigue that goes away with rest or sleep. And it may wax and wane (depending on what chemo and your schedule) but probably fatigue will be with us through treatment until recovery.
I've decided to cope by thinking of my energy as a precious resource I must conserve, because no more is left — the well is dry, and I have this one bucket left for five months. So I choose to sit instead of standing, let people help me, text or don't respond to folks instead of talking on the phone, and to stop castigate myself for being “lazy" when I can do nothing but lay there. I've recast it as “healing" so that helps.
I was also given some wise advice. If you have only one method of coping, guaranteed, that one method will fail at some point. You need alternate methods, and plans for ways to let others help you now, before you may needhelp.
So I am an organizer and list-maker. I've started doing collage and tactile hands on crafts. A friend will come visit who loves doing this, and that will lift my spirits. Plus she'll help with some practical stuff, too. It helps to have something quiet to do that isn't reading and educating and organizing.
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Hi Ladies, I'm so glad to have people to talk to about this and to see how everyone is handling things. My weekend was rough. Apparently, despite our best efforts to stay away from each other, my husband managed to give me the little cold he's been working through and I got super sick. Saturday my chest filled with congestion and I ended up at the ER early Sunday morning with heart palpitations and chest pain. They put me through a bunch of tests and determined my heart was okay and just sent me home with painkillers. Monday morning I was still super dizzy and congested and almost passed out in the shower. After my lab appointment I went up to my Oncologist's office and said I needed help. The nurse looked me over and they sent me for a bag of fluids, some anti-nausea meds and a little more steroids. I was able to get up and work most of the day Tuesday and I'm at work today, but this stupid cold is still seriously kicking my butt.
I will say, I now love my port. They drew blood 3 times at the ER, gave me contrast for a CT, etc. There was virtually no pain, only one small stick and the vein is always a good one. It took about a week after my port was put in before it got more comfortable, but seriously, the port is your friend.
I'm really glad I have a couple of weeks to recover before my next chemo infusion, if I could kick this cold and get my tastebuds right I would almost feel like just a really tired version of myself today. I'm also super grateful for an understanding boss who reminded me again yesterday that my job is safe and the team has by back. What a huge stress relief.
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Sillyoldrabbit, great post. My chemo port has been a little wonky, but they have tricks to deal. If they can’t see blood when they draw back, I cough. They also use a longer needle, which doesn’t effect my comfort in the slightest.
Don’t forget a stylist can trim your wig down to suit you. I’m someone who has flat straight hair, and my stylist says they can cut and style most anything to make it how you want. So I looked for a good color and quality of wig to match
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May07 I'm starting TC chemo on the 26th as well! We can compare symptoms
Got a lot done since my last post.... over the weekend had an Amazon shopping spree that consisted of lots of scarves, hats, and other chemo necessities. I also decided on and bought a wig. It wasn't cheap, but I really like it and now feel as if a huge weight has been lifted off my shoulders. I can't believe how natural it looks.. you would never guess it's a wig. I was surprised at that... and also feel more confident now that I know how snug it is and it won't just blow off in the wind. Yes I actually had a nightmare about that the other night.. lol. I will post pics at some point!
Got my port put in this morning. Actual procedure was pretty much a piece of cake, but afterwards in recovery I had some kind of allergic reaction.. my forearm on the side where my IV was turned red, was itching and I developed a few hives. Not sure what it might be from... they suspected possibly the antibiotic, but I have taken that one before with no problems so who knows. Either way, the dr. ordered Benadryl by IV and oh my goodness that was NOT a pleasant experience! I'm not sure if it was because of the sedatives that were already in my system from the procedure or what.. but I kept getting a headrush, my whole body just felt HEAVY and I felt like I had marbles in my mouth when I was talking. It was the strangest feeling but not a pleasant one! I was freaking out a bit and my heartrate and blood pressure went up pretty drastically. After about 30 minutes of this and chugging some water I started to feel better and was allowed to leave though I had to be wheeled out as I did not trust myself to walk. Now I am afraid of having a similar allergic reaction when I get the chemo because I don't want to go through that again!
BonnieML,, thank you for posting what you did. Fantastic advice.
Hang in there everyone! xo
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sillyoldrabbit - Great post! I feel like I'll be like that too on chemo day #1 (and maybe all the others), like a hamster trying to escape. I have had too many of those obnoxious too-personal ultrasounds since my diagnosis (for fertility treatments). Although they aren't something I could choose for a Friday evening (although lately, it might be a step up, haha), it is like a walk in the part compared to any of this stuff.
Uterine fibroids are of course very common. WestCoastGal - I heard someone at the chemo unit talking about energy during treatment exactly like that, with the bucket reference. They said to use it wisely during treatments.
Steph - That is no fun. I had a pre-op reaction to one of the meds a bit like that. I'm hoping for smooth sailing for you going forward!
My chemo was delayed until April 4th due to a healing issue and the doctors fearing infection if I start chemo tomorrow as was originally planned.
Now I have to get all healed in two weeks! I guess I'm technically not part of the March chemo group anymore, but I'll still hang around if that's ok!0 -
Just got a call from the Oncologists now they want to know if I want to move my 1st treatment to this coming Monday AM instead of Wednesday. I think I want to stick with Wednesday that way my job will not be affecting as much. I feel like I am having to make so many tough decisions quickly.
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thanks WCG, this weariness is not helped by sleep. I am listening to my body and when it says, go to bed! I do. So I have 5 more treatments and apparently I can look forward to this being my new normal. Great. Ah well, this too shall pass.
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Hi. BonnieML
Thanks for the great post! Wholeheartedly agree. Positive energy will help us in the healing process. Really good reminder on adding more veggies and fruits to the diet.
Hi, everyone
I am day 13 after first round TC. Almost feel completely normal after day 12 or after the last shot of Grastofil wore off. energy, appetite, sleep etc. still doesn’t taste food the same way (I suspect, as way too many food taste funny or bland). But pain from Grastofil(WBC boost), acid reflux, dry mouth are all much better. Grastofil seems the one bringing on the most of discomfort so far.
Hanging in there for those who just started chemo.
I replaced regular warm water with lemon and honey water to add some taste. Advice from ladies here, Baking soda and salt mixture to rinse after eating and as often as I can has help me to stay away from mouth sores.
Please remember to protect yourself from the sun! SPF60+ and wise rim summer hats. We are more sensitive to sun due to cancer and chemo.
Hairs are still here and nails seem still all right but the I am ready for hats.
Walking almost everyday except the first few days after chemo, I have dogs so they keep me moving. I have masks and gloves on when I go to stores.
Bought a variety of ice gel packs, plan to use them and loose slippers for toe nail icing next round. Also will try ice directly to keep the temp cool since they have ice in the chemo lounge.
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Hi Steph74!
We can definetly compare and share as we will be on the same schedule
are you doing cold caps? If so which one? I'm so nervous. My nurse just sent me a calendar with all the drugs and when to take them for side effects. She also said to rinse mouth with salt and water 3-5 times a day and that they will provide ice for my hands and feet during infusions...and for my mouth...I'm going to be like a human icicle...she said to bring a sweatshirt cause I may be cold (u think? Lol). I also ordered a silk pillow case that arrived today and bought clartin to take with the Neulesta injection. Oh and I also got a wig that looks very real...:)0 -
Hi everyone! I’m so happy to have a place like this for support. I will start TCx4 next week on the 28th. Until yesterday I was so sure I was going to be able to avoid chemo. Then the oncotype came back at 54. They said the test was actually a fail as it came back showing my ER as negative instead of positive. In that case it soared that number high. But since my ER is only 23% positive and my ki67 is high and my grade was 3 they think i really need chemo. So here I am. I was a little in shock they wanted me to start so quick so I feel so unprepared and have been taking notes from your suggestions. I am actually scared to death of the side effects. The hair loss i think i can deal with. I have to do three shots after each dose which i will have to get my daughter to do lol. Thank each and everyone of you for sharing and i will do the same. Good luck to us all! We got this
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Just have to say you ladies are a wonder if organization! I showed up to my first chemo in jeans, tee shirt and iPhone (no charger of course). I froze then had to sit for 2 hours twiddling my thumbs after the phone died. Live and learn (emphasis on live). I wish I had known about this whole community back then. I get the feeling,and hope all of you are going to rock the chemo thing as well as you organize. Much love and many positives to you all!
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Hope2018 - Hang in there! I had to wait 3.5 weeks for my oncotype score to determine my treatment plan. I was a basketcase the last week. When it came back at 27 - higher than expected (but still in a gray area), I had to make a quick decision for Chemo. It didnt seem real until I was sitting in the chair for my first treatment.
Hi All -
I am on Day 12 and feeling much better. I agree with many of the posts that the first week after chemo is hard especially days 3-5. I've had more energy since day 10, but I am not pushing it. Just happy to make it through a day without being completely exhausted. Still getting used to the new food taste. I am finding myself consuming lemon flavored foods/beverages. Just tastes better than most of the things I've tried. Exercise has not been robust, but I have tried to walk 30-45 minutes a day. Today's exercise was clearing snow off of my car.
I too am continuing to work through this also and am so fortunate to have a supportive boss and team. I've been able to work at home as I need to and so far so good.
My next chemo treatment is next Friday and I am hoping that the side effects will follow a similar pattern. I think one of the most frustrating things is not being able to plan especially for work. But I am trying to learn to take it day by day and make the most of the days I feel good.
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I'm doing dose dense ACT and had to cancel the final paxlitaxel treatment due to allergic reaction. My oncologist said not to worry because I'm node negative, which I was glad to hear. I notice that many of you have a similar DX as me: IDC, >2cm, no nodes (age 40s) Er+, pr+, Her2-, grade 3,and are doing ACT. Wondering if you were given options for shorter treatment.? In the end I'm glad I did the most I could because of my age, but can't stop being curious
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May07 I sent you a PM, but no I decided not to do cold caps and just invested in a nice wig. I hope that it works for you! I too am apprehensive about all the prescriptions, but I figure if they will help me feel better then it will be worth it! I really never get sick (knock on wood) other than the occasional cold my kids bring home from school so having to take all these medications,etc. is foreign to me. Crazy that we have to get sick in order to get better... that part continues to baffle my mind.
I'm also in the same boat as those of you with the "surprise" Oncotype scores. All along I was told I would just need surgery and radiation, and my dr. was confident that the Oncotype would be low.... but NOPE! In a matter of days I went from "thank goodness I won't need chemo" to "oh crap I can't believe I'm gonna get chemo!" Some days I wish I could just get off the roller coaster!
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I'm doing dose dense ACx4 and then dose dense Tx4 which seems a shorter treatment. That was the option proposed by my MO and I trust her completely so I just went with it. I'm 6 days post first AC and feeling tired, flueish and sad...........I miss my breasts, vigor and hair (which I get buzzed off tomorrow to have made into a wig). So far, day 2 was the worst as I was sent by my medical team to the ER for head CT due to double vision and vertigo. The CT was normal. I think the symptoms were from the dexamethasone. Anyway, that abated after 4 days and I can see straight now. And, I keep thinking this will be over by Christams!
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I see people recommending Claritin for the pain but what if you can’t take those kind of drugs. They give me a racing heart. I have hydrocodon though. Should that help with those types of pain
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Quiltingnut, the Claritin is not for the pain specifically (like a pain killer) but the active ingredient counteracts the Neulestra — the chemical seems to reduce the muscle spasms and aches, more like short-circuiting it before it gets started and lessening the symptom. That's how my oncologist described it, so if you can't take Claritin, I'd ask your oncologist if there's another class of drug that might have the same effect. Good luck!
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I’m going to the veterans hospital where unfortunately they don’t treat breast cancer very often. They just told me i would start next Wednesday with no explanations of possible side effect preventions. They did give me steroids and nausea medicine and I suppose I will get the shots I’m suppose to give myself, the day I get chemo. I will ask about the Claritin before they start the procedure.
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Good evening to all,
I'm starting chemo on Monday 26th. My onc said I would do a dense dose circle with Taxol. (he told me other meds aswell but there are for my blood, stomach etc) Has anyone had only chemo with Taxol? Do you have any tips for chemo? what to wear, should I stop working? I'm also afraid about neuropathy I read about taxol....
P.S. excuse my english, there are not my native language
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Notered: i wish I could help with your questions but I’m only starting mine next week also. I also have questions, apprehension ect. From what I’ve read you might not feel like working the first week after. Someone else could probably help with that. I’m just going to wear jeans and short sleeve shirt but will take a light blanket. I’m not having a port because I only have to do this four times, so just IV for me.
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Dear NoteRed,
Welcome to the BCO community. We are sorry about your breast cancer but glad that you reached out to our members. If you go back to the Chemotherapy Forum Page you will find some of the initial topics listed refer to tips and suggestions for getting ready for chemotherapy. Let as know via Private Message if we can be of help with navigating the site. The Mods
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Looks like I'm starting chemo on the 28th. Has anyone had the combination of Taxol & Keytruda? I'm part of the I spy 2 trial and will do 12wks of Taxol with 4wks of Keytruda.
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