Starting chemo February 2018
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ohh DEB, sending cooling healing vibes your way. Not nice those burns and I was complaining about big bruises.
MOTH thanks for the input about bone pain, the massage really helped. Now I've booked another massage day 3 after chemo next round, I deserve it (even if I can't afford it) Wish I could give you my platelets, lol, sky high. Good luck, I know I'd hate if my treatment was put off.
For the rest of you, keep up keeping up. I'm proud of us all!
indahood
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I hate chemo day, mostly cause I get home and wait for the Se's to kick in, hoping it's not too bad this time. Port was a little sore today and the nurse said it's deeper than usual so the stick wasn't great but tolerable. jo6 my health wasn't great to start with I'm a 60 year old overweight couch potato, pre diabetic which really means mild diabetes, hoping I lose enough weight during this to help with the diabetes tho I don't recommend this diet lol ☺️ I'll check back in later, hope everyone else is doing OK and has a nice weekend
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I was supposed to have round 3 today but my platelets were still too low so they're delaying it by a week (so it will be 3 weeks apart assuming my numbers are good next week) & I'll only get 75% again. Sigh.
On the plus side, I'm feeling really well. I now get what people who are on the 3 week schedule were saying about how good you feel in that last week. Even my taste is sort of coming back.0 -
ladies! It’s been a while! Wow, trying to catch up on all your posts. I loved the pet pictures! They are all so cute! I myself have two cats (who are both currently laying on me as I type here).
Debs - sorry about your burns! They look painful. Hope your SEs are small this time around!
Moth - sorry your chemo was pushed another week! Enjoy the week though! I’m just now feeling like myself, just in time for round 4 on Monday. It feels good to be back, and if I could get a week of this I would love it!
For all those going through SEs, I pray they aren’t bad and you can manage.
Round 3 wasn’t as bad as I thought it would be, but it wasn’t easy either. I was fatigued for longer. Had nausea but was able to manage it. I am having difficulties with some physical activity. I tried climbing three flights of stairs at a parking garage the other day and had to take a break after 2 flights. I normally wouldn’t have any issues with such small level of exercise.
Also, I have these red spots and hard blisters that are showing up on my hands and feet. I called the MO and he said that’s normal. They itch and hurt a bit, but I have been able to manage it. He said to use topical Benadryl or cortisone cream. I’m going to get some and hopefully that will help. I’ll definitrly be icing hands & feet durbig the taxol portion of my treatment.
Hope you are all well!
Hugs
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Deb those burns look so painful, I hope that once your port heals up it gives you no trouble at all- you deserve something to go smoothly! Momlovesherkitties the experience you described at your infusion sounds so scary! I'm glad the nurses were on the ball to turn that around for you. Did they tell you what the plan would be going forward to prevent this type of horror?
Moth I'm so sorry they had to delay treatment. It sounds like you have a great attitude and are making the best of it. Enjoy another week of feeling good, I know we all really want to get this over with, and the chemo will still be there for when your body can take it again.
Indahood I'm glad that a massage helped with the bone pain. Thanks for sharing that helpful tip with all of us. I've been thinking about you and hope that your people are coming through for you when you need them to.
Sharon I hope you are feeling better. Sorry you had to stay in the hospital for several days. That's a big fear of mine, and I hate to hear of anyone who has to go through it. AMBurt it sounds like you have also had a rough go with delaying treatment and lots of SE's. I hope that tonight finds you feeling more comfortable.
Jlove I'm thinking of getting a medical card for CBD, but haven't done a bit of research on it yet, I just know from anecdotal advice that it could help with SE's. I'm not even sure where my onc stands on it, but I'm thinking I'm going to ask about it, I'm real curious about it's effectiveness.
CBOK congrats on making it through the AC, that must feel good to have that behind you. Best of luck going forward with the Taxol, I hope it treats you well.
Tracy sorry that you got the news that you have to have that port you didn't want. So many unfair crappy things have to happen to us it really sucks when any personal choice is taken away also. Hugs sister.
I had my second round of TCHP today, it went well and I'm just riding out the steroid energy boost. The house looks awesome, lol, and I've gotten caught up on other tasks I've been putting off as well. I even managed to make a good healthy dinner tonight. It'll probably be a shitshow come Saturday but like all of us I'm going to enjoy those good days when they come. Love and light to you all.
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Deb-oh my goodness! Those burns look painful! This stuff is no joke
Pbello-try looking for a lotion that has urea in it. It's supposed to help with the hand issues from chemo. Can't remember where I read that but I bought some when I was doing all my pre-chemo shopping.
Moth-glad you got some taste back even if it's the silver lining of treatment delay
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Another long day at the hospital for chemo. When I was released from the hospital last week they told me my port was going to have to be replaced again. They told me someone would be calling me to let me know when the next port would be happening. Well never got a call so when I show up for today's chemo appointment that is the first thing I ask the nurse. She is like what??? Pulls up my chart and says your right we can't use your port
She then calls my doctor somehow the information was never sent to the chemo center or my doctor all the hospital did was update my chart. When something like my port is a big issue the hospital is supposed to notify the doctor in some to me unkown special way. That did not happen
So my daughter and I get to the chemo center at eight am and did not get out of there until four pm. Spent a large part of the day at the hospital as an out patient. I now have a PICC line until at least April 10th when they will remove the current port (which is the second one) and put in another port. The new port is going to be completely different from the two ports that failed so quickly and will be done by a different surgeon. The PICC line will stay in place until we know the new port is going to work. I think if the new port causes problems I may have to keep a PICC line until the end something no one really wants. The chance of infection is much higher and the lines are a pain in the you all know what. Plus it means extra visits to change the dressings. The PICC line also takes a lot longer as the lines are smaller and the drugs can't go in as fast. I felt so sorry for the nurse doing the push the two tubes took almost an hour.
At least round 3 is done and I only have one more of the AC drug combo. Then I start Taxol which is supposed to be easier on the body. They have also added some new meds hoping to keep me out of the hospital. One is new anti nausea med as I have had an awful time with that. The second is an antibiotic they want me to take at the time my white count is the lowest in hopes I will not spike a fever and have to be hospitalized.
Deb those burns look awful and painful . Hope the port means that is over for you. Moth I know how frustrating a delay is when we all just want to get this over and done with.
CBOK congrats on getting done with the 4ACs I will be watching to see how the Taxol goes for you as I am doing the same regime the nurses keep telling me that for the majority that do the same regime as us Taxol is tons easier. Hoping that is the case for all of us here.
Collen if you are reading this I think of you and your little ones often and hope you are doing well.
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CBOK - Congrats on finishing the AC portion of your treatment! That’s great news!
I’m on the same chemo treaemtent and my MO said the Taxol should be easier than the AC. Just like Amburt, I hope it’s easier on all of us! thanks so much for the ointment recommendation. I’ll look for it tomorrow. It’s been a little bothersome to walk and wear shoes as the blister things on my feet hurt a bit. Amburt - I’m sorry your port problems have been so complicated! Hopefully you will get the PICC out as early as possible and this new port works out well for you. At least you got to do round 3 and are almost done with the AC portion.
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Had a good day today, must be the steroids and the chemo hasn't kicked in fully yet. Ran some errands and went on a nice car ride by a lake with hubby and 2 dogs. Hoping the D doesn't hit me to badly this time. Amburt your port story makes me so sad, I was such a baby about getting that procedure I can't even imagine what I'd be like if I had to go thru what you've been thru, you are one strong woman. We all have been strong and we are going to get thru this together. Thanks for being here all of you.
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I started Feb 6 2018 and I'm about 2/3 through chemo with radiation to follow (and anti hormone after that)- so far not as bad as I feared but headaches and I have injection that I cannot do and so go to clinic to get it and they make me feel a bit lame for not doing it nor can my husband. I have about 8-10 days headache and general malaise but no nausea thanks to meds. I feel really ok by third or last week before next chemo but I am lucky to be on FMLA with pay! So I just use that week still off and catch up with email and long-term projects and conference presentations and the like. I am most worried that at age 66 I'll be encouraged to retire but trying to have a lot of gratitude for treatable nature of my cancer type, ILC.
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Hi Metta Mary, nice to meet you glad you joined us here. I have my chemo every 3 weeks also and I usually feel really good the last 7to10 days. I'm on day 3 after and not having a great day the big D hit me earlier ugh I have had ongoing issues with it sure will be glad to be done with chemo. Hope the rest of you Feb girls are doing ok, check in when you can
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Hello MettaMary4, welcome to our nasty club!
Deb, so sorry to hear that big D is back! Do you think it would be possible to take preventive medicines the second day after chemo? I am so sorry to read about everything that has happened to you.
I usually feels better 7 to 10 days after chemo. Hoping that tomorrow my mouth sores will magically disappear as they did previous cycle. It is becoming painful to eat. I tried the magic mouthwash but the sensation is do disturbing thst I chose to opt out of it. The only thing I will try again is to put some on a cotton tip directly on the sores. I have been able to finish module 2 of my online class on growth mindset and I am waiting books I requested in my local library to start module 3. Course is due mid April but I know that I won't be able to work on it during a week due to chemo SE. I might order a jigsaw puzzle to keep me busy after that.
Hope everyone is OK.
Cheers to all!
Laurence
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lolette , same here i feel good after 7-10days as well.
Debs, its sad to know the big D is behind u.. hope all gets back to normal asap...Today is my 3rd session i am On my way to Hospital to check on my blood count .. which always puts me in trouble .. hope its fine today .. im so tensed .. also i have my appointment with my surgeon to check on .. then wait on for a long day at hospital until chemo gets done ..Thinking about it gets me nauseated ..chemo brain maybe.. also my biggest SE is vomiting which my doctor doesn’t consider as a big deal if its frst 2-3days.. so next three days all my energy is gonna be big
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Hello Chemo girls. Welcome Metta Mary, I'm on the same regimen as you TC, every three weeks.
Like you I luckily do not have nausea, I've even been able to not take nausea meds except what's in the 3 days surrounding chemo. My chemo day is pretty easy as I'm riding high on the steroids, day two is still a good steroid day, I usually cook and house clean then day 3 is when it hits, no more steroids and I feel tired. Day 4 achy and exhausted can't do much. This can last for several days and then I never know until I get up in the morning whether this will be a good day or a bad for at least the next week. So adds up to about 10 days where I just go with what I'm given. Usually around day 11-20 I get increasingly stable in how I feel. Although I did have extreme fatigue round 2 on day 12-15 but OC explained that I it was because of the mild cold I had.
Today is day 10 and it was a very good one. This last round had been particularly hard with the aches and pains and I still have some but my energy is up, I even walked the dogs for 2 solid hours, so phew. One more round to go!
DebMisto, poor you and Mr. D. I sympathise and want to tell you that I have the opposite. I spend the first week battling Mr. C. It's amazing how different people react to the same stuff, hey? And that they list the side effects as : diarrhea, constipation, So you'd think, I hope I get both and stay regular. lol
Lolette, good for you for your courses! I'm trying to find ways to use my time productively too. Lately it's been trying to get my smallish town (pop12,000) to have some arts and health programming available at a discounted rate for people experiencing health issues. I've been surprised at their response, so negative. It's like they think I'm trying to cheat the system. Anyway soldier on.
Moth, sorry for your delay but hope the weather holds out for you so you can get out in your garden and profit from your 3rd week and feeling well healed.
Amburt, You are so thoughtful. I noticed you noticed that Colleen has not posted in a long while, So now I too am thinking about her.
Colleen where are you, hope you are ok!
22fighter for: I love your attitude. I live alone so I get the house clean on the steroids too. When the shit show hits, I sit back and watch it fall apart for about 10 days. Then I get up and clean slowly for about the next week, I usually don't get it all done before chemo time again. But not to worry, I go my 3 steroid days! Gotta love those steroids. I can see why they are addictive.
Ok, Enough for now. Take care ladies.
indahood
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as i thought .. my count dint shoot up my third chemo also delayed for 2days
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Sounds like TWills had a similar experience with chemo as I did. My 4th paxlitaxel was cancelled due to the allergic reactions I had at home. As you may know it’s extremely rare to have a reaction two days after treatment. My oncologist felt the risk outweighed the benefit so only 3 paxlitaxel for me. I know it’s very common to adjust your chemo (reduce doses, shift dates, etc) so I’m not worried about deviating from the standard schedule. Didn’t have a choice anyway.Still curious if your oncologist gave you any stats or details about risk of cancelling a treatment. Mine just said it doesn’t concern her because I will be taking hormone therapy, which is critical for Er positive patient s.
Of course then I sated to wonder if my treatment regime was over treatment since I am node negative. Seems a lot of people are given a choice about Ac-t, or TC. Did your oncologist ever explain why AC-t was best for you? Mine didn’t and now I’m curious to understand more.
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hi all,
I’m finding the AC treatment gives me a lot of fatigue for 6 days. The steroids have an impact to keep me awake, but I can’t usually get out of bed. Trying to eat lots of protein and address my slight anemia with diet. Anyone have a tip about improving fatigue beside improving your diet
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Hello Walden1: for AC + T instead of TC, my MO told me that TC was more used for triple negative cancer and BRAC genes positive candidates, I think. I know I talked about it with him because another MO I consulted proposed to do T before AC and he told me that if treatment failed there was no room to add the C from TC in the AC treatment. But it was a month ago I got this explanation and I don't remember it well.
For your second question, doing some kind of physical activity seems to decrease fatigue but you barely can get out of your bed...my sister, who is a doctor, advises me to fast for 2 days before, day of, an 2 days after chemo to reduce nausea, constipation, diarhea, fatigue. It is highly controversial but the second MO I consulted said 24h before with water, broth and soup, a 500 cal meal just after chemo and eating normally the day after seems reasonable and could help the fatigue. I might try this one for round 4 as I have planned to eat my Easter Sunday meal Thursday just before my chemo round 3. I have tried fasting for 5 days. I got disgusted of broth, i vomited before chemo, i felt weak before chemo so I decided not to do it again. It was too hard for me! However, my tumor shrunk by half after 1st chemo, which was not expected after 1st chemo so I do believe that the fasting increased the potency of the products on the cancer cells. It is everybody's choice.
Have a great week all and good luck for those battling SE or having chemo this week.
Colleen, I am hoping that you don't chat with us because you are feeling so well that you don't need the support of the forum!
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Thanks Lotte19,
Never heard of fasting as a strategy before. Did have trouble eating before and after round 4, which was my worst fatigue yet so I’m guessing it would be vert tough for me to actually fast. Small frequent and simple meals definitely helps. An, apple, broth, pasta, etc. Keeping it simple for three days after treatment has definitely kept nausea in control along with the meds of course
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Hope the Feb girls are doing ok, I had an OK day today, fatigue is the worst se today, heading to bed just wanted to check in
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Hello my fellow February troopers!... tomorrow was supposed to be my 3rd round of AC but found out I have an infection from my urinalysis (taken because I was having frequent night time urination...like every few hours). So now I'm on 5 days of antibiotics... chemo will be delayed a week...getting my blood checked next week to hopefully resume my treatment...
Only good side to my delayed treatment is being fully able to enjoy my kids' spring break with them.
I'm also getting more ondansetron this time around to hopefully shorten how crappy I end up feeling by days 3-6.
Hoping everyone is having a good Monday!
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Hi Pbello. I noticed you were given a choice between TC and ACT. What made you finally decide on ACT? I’m node negative, ER positive and doing ACT too. Did your oncologist have feedback about ER positive cancer that helpedwith your choice? Sometimes I feel I’m doing too much chemo because I’m node negative. Other days I’m happy I am hitting it hard.
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WaldenOne,
I am doing TC and it was explained to me by my oncologist that since I was early stage BC, stage 2 grade 3, he wanted to bypass the A, because it is a chemotherapy that has risks more long term SE. So I guess I got chemotherapy light.
Does that help?
Indahood
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Mom_of_two - bummer about the UTI delaying things for you. Isn't it weird how these minor things are a big deal now.
Gotta say I don't enjoy obsessing over every health thing but it seems that for a few months, this is how we must be.
Walden1 - did you do Oncotype or MammaPrint? You're right that AC + T is a bit more heavy duty. Some other factors other than tumor size and grade are your age and also how strong or weak ER+ or PR+ your tumor is. In my case they were originally planning to offer me TC but after Oncotyping that changed to a strong recommendation to AC + T.
I'm having a great week trying to catch up on things that need doing in my life. Feeling totally healthy and well right now. Blood work tomorrow & if everything is finally back to normal, chemo 3 on Thursday (finally...! )0 -
Moth, Glad you're feeling great! I really love the 3rd week too. Super interesting explanation about why you got AC and T rather than TC, I always looked at yours and given we are both in Canada (im in Canmore) and have very similar BC's, I was concerned that maybe I wasn't getting enough. I even saw that your oncotype test showed trip negative and asked my Oncologist about that too. One of my path reports said my estrogen level was super low and I was concerned I too might be more like trip negative. But turns out, different tests showed different. Will you need to go on the hormone blocking drugs later?
I'm 55 and I know they tend to be more pro chemo with younger women. I'm getting Chemo because my prosigna came back high risk of recurrence and luminal B, whatever that means. Still haven't wrapped my head around that. If one factors in also the different personalities of oncologists also, it can be very difficult for we laypeople to figure out why a certain treatment has been chosen. I did a ton of research at first but then I chose to just trust because everything else started to feel crazy making.
I guess Walden, I'd just ask my MO about that choice, Moth has an excellent point about age etc. I know that had I been in my 70's I' probably wouldn't have been given any chemo.
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indahood - I'm pretty sure I'll be doing hormone blockers. My core biopsy said 10% ER+ and I believe the recommendations are if you show anything over 1% you should take hormone blockers. I don't think we have the new report from the provincial pathologist office yet. When we got the Oncotype saying triple neg, my MO said she'd send it for re-examination by the provincial head pathology office but I guess there's no rush on it as we won't be making those decisions for a couple more months. She figured that my tumour was just heterogenous & that's why we got the different results.
I totally get that same thing about needing to trust the experts on your team or else yeah, you start second guessing everything and that just adds way too much stress to an already stressful situation.0 -
Feb Ladies! Hope you are all doing well. I’m on day 2 of my last AC round (yay!). Riding that steroid energy Burst. Went for a walk, cleaned the house, ate small frequent meals. And now going to take a nap. But wanted to check in wit you guys beforehand.
Walden1 - As Moth mentioned, there are other variables other than size & pathology that can lead to a stronger treatment. Though I am stage 1, grade 3, all nodes negative, I have a very high Oncotype. I am ER+, but very low. Also, I am 40 years old, on the younger side. As result, though the MO gave me a choive, after I pressed him he said his preference is AC+T because of the BC overall details (especially oncotype). I am a believer of hitting things with the strongest medicine, so I agreed with him and am doing the AC+T regime. It’s been somewhat difficult, but NOT impossible. Fatigue is my biggest SE, along with constant mild nausea, even taking anti nausea meds. Also, now I have these small blisters, red rashes that started showing up on my hands & feet. They itch & hurt the first few days, but then stop hurting. Also, for fatigue, I find that walking early in the morning or late afternoon has helped me a lot. Also,small frequent meals. But i try to get 2-3 naps a day and full night sleep. I figured, if my body needs rest, that’s what I’ll give it. Hope this helps!
Aanoliver- sorry to hear your treatment was delayed. Sending you positive thoughts so you can get it in two Days!
Moth - even though your treatment was delayed, I’m happy that you are feeling so well and getting things done. Goodluck with bloodworm tomorrow. I’ll be thinking of you!
Mom of two - sorry to hear about your delay! I hope the antibiotics work quickly so you can get your 3rd round! I’ll be thinking of you too.
Hope you are all doing well!!
Hugs!!!
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Laurie-The definition of Luminal B depends on who you ask. Unfortunately there is not a consensus (you know, just to make things easier). Some say it's ER/PR+ and HER2+, some say it's ER/PR+ and HER2- but with a high expression of the ki-67 protein. I prefer the second definition because that's what I've seen referenced the most in studies I've read, and following that guidline I'm considered Luminal B. Ultimately when you read anything referencing Luminal B you have to figure out how it's defined in that context or it's not very useful.
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pbello- what was your oncotype? I know I should my question it too much, but sometimes I can't help questioning by "lite" treatment course of just tcx4 if someone similar is getting more heavily treated.
Anyone going through chemopause? Holy hot flashes.. with 3 kids too, running after them, I get so hot, the chills, then hot.. low libido, hmm. Not loving this. Have you guys heard of anything that could help? I heard effexor, but I'm nervous to go on something so strong.
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Thanks Pbello and Moth! I did not get the onco test, myonco said it was for older patients with less disease. I’ve come to learn th it is used at my age, but I guess her point was she would , chemo in my situation and didn’t need to rely on oncotype. I have two 2 cm IDC tumours, grade 3 close together with high grade DCIS cells extending to an area of about 6 cm (these are cells seen on MRI not a DCIS mass) I am highly ER & PR positive so it sounds like TC was a possibility. Too late to second guess now. Besides I’m allergic to Taxol so TC would have been rough if not impossible.
Thanks so much for all the feedback you’ve shared! It’s helped me tremendously. Good luck with your treatments this week
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