Starting Chemo September 2021
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Oh SPADES2525, I hope you feel better soon, I'm so sorry to hear you are couch ridden. Thankfully my side effects right now are manageable easily as long as I avoid coffee and a few other favorites. Giving myself a second shot tonight for the old WBC count. Went OK with my first one last night. Hopefully I avoid the hospital this round.
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Spades - ugh! Sorry to hear taxol is hitting you hard. I too feel like a total sack of crap
Oldladyblue - I hope the injections do the trick for you! They’ve kept my WBC actually higher than normal so far.
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Looks like I'm back at it this coming Friday and, after reading your posts, Mindthief and Spades, I'm grateful to be on weekly Taxol instead of the dose dense. So far, nothing like you describe--just some achy body. I did notice that even though I have had a little break here, my eyelashes and eyebrows have suddenly disappeared!!
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Hi all, So far so good this 3rd round. My nerves all over feel "jangly" for lack of a better word, like there is a mild current running through my whole body. The digestive track seems to have settled down, the rash is only on my right foot, and I just want to sleep alot. Giving myself the shots is easy, with Benedryl and Tylenol no bone aches. So I guess I'm doing good.
I understand about the eyebrows and eyelashes, Hummingbird mine are gone now. Mindthief hopefully you will feel better soon. I'm sure I'll be taking another 3 hour nap today.
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Happy Thanksgiving to all my new friends here! I hope the day is good for you all, however you spend it. I am thankful that we live in a time where the treatment for breast cancer is so much better than it was even 5 or 10 years ago. Cheers!!!!
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Happy Thanksgiving Everyone!
I'm going to have a glass of wine with my turkey today--SO excited! My daughter and son-in-law quarantined for 10 days to be able to bring my two grandsons (age 21 months and 3) here in an 8 hour drive yesterday. I'm in heaven and very grateful. I hope everyone has an equally happy day and weekend, even you girls in Canada !
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So happy for you Hummingbird to see your family. I know how special that is. We cooked our usual feast but this year it is a "to go" version only - the kids are all coming by to pick up their food and we will have air hugs in the garden and I get to see my 2 year old grandson as well (from a distance). I am also very thankful for this. Tomorrow me and hubby get our Covid Booster shots. Today we are having a glass of champagne - first drink since May!!! I'm very much looking forward to it. Happy Day everyone!!!!
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Happy Thanksgiving!! While I celebrated our thanksgiving last month, I went to University in the States, so I also celebrate thanksgiving today!
I’ll take every opportunity to feel thankful and grateful. Enjoy the time with family and the precious glasses of wine and champagne0 -
How is everyone holding up? The last cycle was another long, painful haul for me and I feel very unready to do it again this Friday. I also randomly gained 5 pounds in the past 10 days and feel generally bloated and grotesque. Taxol most definitely does not agree with me
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Hi Mindthief - sorry you are not feeling good - hope you feel better soon. I may have also gained a pound or two over Thanksgiving, I got my taste back the day before and have eaten heartily since then. I am off for Chemo #5 this Thursday and then just one more to go after that. Then surgery in mid to late Jan. I will be happy to have the chemo behind me for SURE!!!!
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I can relate mindthief. I got 4th TCHP (out of 6) last Friday and my belly is full of gas, terrible taste in my mouth, I feel miserable. I know it could be worse in terms of side effects but still it is hard to pretend to be feeling ok. My concentration is not good either, can't keep up well with work or anything demanding. Today I was lying there and thinking, if it relapses and I need another chemo, I might give up. My mind isn't in a great place right now, I was trying to avoid to write. Sorry for the negativity.
Hope others are doing better.
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Well my #3 TC snuck up on me, I had hell week last week with extreme weakness, shakiness, WBC count too high, RBC count too low (but no hospital this time), bad taste, sore mouth, either constipated or the runs, itchy rash on feet, vision changes and general depression and mind fog. I am feeling better today, but oh gosh, how much harder #3 was. Now I have 9 more days till #4. But I am only getting 4 TC infusions, so this is my last, thankfully. Spoke to the radiation doctor today, will get 16 doses starting in Jan. Then hormone therapy.
I can understand not ever wanting to do this again, chemo is hard on heart, soul and body, SARAH_78. I hope you can keep your mood up.
Hi to everyone else, and my wishes that side effects lighten up.
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Sarah_78 and oldladyblue - I'm really sorry to hear you're both struggling as well. I think even the less severe side effects start to wear you down after a while and at this point, coming up on 3 months into treatment, it's probably par for the course to be pretty miserable. Hugs to both of you.
DebbieM - good luck with treatment tomorrow!
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I also hate every bit of Taxol .. and am dreading round 2 on Friday. I only really felt okay on Monday which definitely doesn't feel like enough recovery time. I'm sorry there are so many of us really struggling…not only are these difficult physical side effects cumulative, but the emotional strain certainly is as well!! I think I am in pure survival mode. Best wishes to all those getting treatment this week… and for those that aren't, I hope you can find moments of rest and calm.
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I'm wondering if because I'm on weekly Taxol, it isn't as bad as what y'all are experiencing? I'm struggling with a bit of bone and joint pain on days 4-5 but otherwise pretty okay. Of course, maybe 3 weeks of mine is equal to one of yours, so it is really just beginning.... but so far I'd take Taxol over AC any day!! Just having energy and not being in bed for days on end is a win.
I go for #4 on Friday but got my tree up and a Christmas quilt finished this week, so am feeling pretty good about things. Plus, it is still in the 80's here so that doesn't hurt!! And, despite some totally bald patches, my hair seems to be growing in a bit. Didn't expect that--hopefully not a fluke.
I'm sorry you girls are having such bad effects. Can you delay one week to get things to settle down some and enjoy holiday prep? It's worth an ask. I'll be rooting for you and crossing fingers mine stays moderate at the same time
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Thanks for the suggestion HUMMINGBIRD. My doctor actually wanted to delay a week, after I got out of the hospital, but I didn't want to. She reduced the dosage of both medicines instead and I continued. (75% and 90%). I'm sure the last one will be on that reduced dosage too, but I felt it better to continue without a break. Although my side effects are stronger than with the first two infusions, I am making it OK. It helps me to know you all are making it through too. I wish you all more energy!
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Hummingbird - my understanding is that the dose-dense does have worse side-effects. I never thought I’d say this, but I actually found the AC easier. I do wonder if they run the taxol this way here because it’s more cost-effective for the hospital. In any case, like oldladyblue, I’d rather push through at this point, especially because I’m currently scheduled to finish before Christmas and it will be kind of psychological hit if it gets bumped after that. I’m actually waiting on blood work right now and keeping my fingers crossed that things are okay to proceed (my liver enzymes were up last time).
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mindthief - I think that’s a big factor here.. cost effectiveness. I saw my oncologist on Thursday and because of the severity of my nerve pain, and that I still couldn’t feel my fingers, and my liver enzymes were also elevated.. I got changed to weekly taxol. So, now I have 8 more instead of 2!!! I was supposed to be done before the end of the year but now I go until January 28th 😩. Big emotional blow… but I’m trying to see the positive of less pain, better function, and less risk of permanent side effects.
How did your bloodwork look this time? Did you have #3 yesterday?
Oldladyblue and Hummingbird- glad you’re both making it through ok!
Sarah- how are you doing? You were really struggling the last time you wrote.
Debbie- when is your last chemo?
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Thank you for checking on me Spades.
It is 9th days for me after 4th THCP out of 6. My taste had been really crappy this time around and I ended up in a vicious loop of being hungry, taking a bite and then getting disappointed with food, ended up losing 4 more pounds, in total it is now about 11 pounds for me since starting Chemo. I had some Corona-fat from last year so almost about to reach my normal weight. Last week the weather was bad, snow and rain most of the time so couldn't go out twice for a walk, those walks keep my sanity in check so I felt more stressed than usual. Today I started feeling like myself, taste/energy/psychology combo, hope it goes on like this. It is a little sunny too!Most of the stress might be coming from the fact that I don't like my oncologist all that much, haven't seen him since he placed the port, that was like 1 week before my first chemo. I have questions unanswered and need to discuss my surgery options. Here Corona cases started to increase, last week suddenly my husband couldn't enter the hospital without a test done during last 24 hours. Then there is holidays coming up and some doctors might be away. 7th January is last chemo if it goes as planned, until beginning of February I need to find a good surgeon and decide on where I'll get surgery. This week I will try to get some appointments for the beginning of January and hopefully enjoy holidays after they are set.
Spades: I am glad they changed you to weekly Taxol, there is a study that shows the toxicity of that being lower than 3-weekly one. Crossing fingers for you that it works better and nerve pain subsides, liver enzymes improve. I suspect cost/resource effectiveness is an issue like mindthief said. When I wanted weekly administration, my onc tried to convince me otherwise.
Hope everyone else is hanging in there, *hugs*
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Hi all - well I am on Day 4 of TCHP Cycle 5, one more treatment to go after this one on December 23rd!!!! Whoo HOO!!!! I am feeling pretty OK so far except tired and my taste has gone again, very quickly this time on Day 2. No appetite and nothing tastes good. Popsicles and grapes are about my favorite thing right now. Because I'm hungry I've been waking up early (3am ish) so napping more during the day but I know that will correct itself when my taste comes back. Last cycle it was around day 15 that my taste came back. We'll see what happens this time. Otherwise so far the Big D has stayed away so far thank goodness. Never had any constipation issues thankfully so far. I am down 23 lbs but also before my chemo started I had a hysterectomy where they removed 2 very large non-cancerous growths so that helped with some of my Covid weight gain. Trying to get back into doing some daily exercise but not very good at it so far. Just one day at a time. Yesterday I was thrilled to go to an outdoor park party with the family to celebrate my 2 year old grandson's birthday. Lovely day, everyone masked up and no hugging except "air hugs" but it was sooooo good to be out and see the family other than on a zoom screen. I miss hugging my family so much and can't wait to get back to that part of my life. Plotting and planning a trip with me and hubby to Kauai when this is all over, assuming travelling is good. Probably November of next year. Have a lovely Sunday everyone.
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Sarah_78 - that's a bummer that you don't like and haven't really seen your oncologist. At first I didn't really like mine either, but I think that was more because she was the bearer of all the bad news and I have since gotten to warm up to her. Of course it helps if you can get in to see them. Mine is located right where I have my infusions so often she or her nurse will pop in and check up on us and I've seen her several times since I started. I would definitely push for someone who is more accessible, even online. There are so many questions. Hope you find someone really nice. Possibly ask around others when you go in for infusions, or the nurses. They are always a good source of referral as they know the doctors well. Good luck with that. Hang in there....sending hugs...
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spades - I’m glad they switched you to weekly taxol. It will draw it out but it sounds like it’s the best option for you, especially with the neuropathy. Mine went ahead as planned, so I’m down to the last one on December 17, and knowing my oncologist it would take something major to change that at this point. Fortunately my liver enzymes came back down to normal and in fact my blood work overall was better than it’s been. I can’t remember if you’re into alternative treatments at all but I previously worked for a naturopath specializing in cancer care, who recommended a plant extract called betula pubescens for supporting the liver. Whether that made the difference or not, I don’t know, but I’m happy that something brought them back down.
Sarah78 - oh my goodness, it’s no wonder you’re stressed! I like my oncologist and see her the day before every treatment to review how things are going, and I’m still an emotional disaster. I hope you can find a surgeon you like and trust; it really makes so much difference.
DebbieM - Kauai sounds heavenly! I’m hoping to travel plan a trip of some kind when this is all done as well.
I seem to be the only one gaining weight at this point, but I guess I shouldn’t stress about it. At my lowest on AC I was down to a bmi of exactly 18.5 so a few extra pounds is probably not a bad thing. I’m on oral steroids now to help control the pain, so we’ll see how things go this time around. Monday/Tuesday/Wednesday have been my worst days in the past. Aside from significant insomnia, I'm doing okay so far.
I hope everyone stays well this week.
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Spades, you will feel SO MUCH BETTER on weekly! I've been quiet on here because you are all suffering so much and I basically feel fine doing the weekly so I didn't want to say it. Aside from very slight neuropathy in the tip of my tongue and some achy but manageable days, my biggest complaint is my toenail is falling off. I feel so for you girls. Reading all the side effects of Taxol almost made me quit chemo but the weekly is bearable, for sure. You'll feel happy about moving to weekly, despite the additional length--no big deal!
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Sarah - not liking your oncologist and not feeling supported definitely would add to the stress of all of this madness. I hope you’re able to set up those appointments! I also see my oncologist or another doctor usually before chemo, but now that I’m weekly, I won’t see her again until the end of the year unless I’m having a problem.
Mindthief- thanks for the suggestion! I’ll look into it. I hope the steroids help you make it through this 3rd round… the countdown is on to being done! Will you be getting radiation as well?
Hummingbird- I am certainly hoping there is a big difference in symptoms so that the longer time frame feels worth it! I’m so glad you’re tolerating it well. How many have you done?
Planning trips is so exciting. I can’t wait to start doing that!
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Spades, I've done 4 so far, although had a 2 week break due to that infection.
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Spades - yes, I’ll start 4 weeks of radiation around the second week of January, then surgery to take my ovaries out some time in the spring I think.
Hummingbird - I’m so glad you’re doing well. That infection was more than your fair share of crappy luck!
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Hi everyone - well Day 6 of Cycle 5 has definitely got me much more tired than the previous ones. Have been taking long naps which is very unusual for me but very refreshing when I wake up. Taste has been coming and going, mostly going....and vague just foggy is the best way to describe it. They said the effects are cummulative so I guess this is it. In the grand scheme it could be much worse so I'm not complaining too much. Just updating. Hope everyone is doing well today.
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hey all! I hope everyone is hanging in there. I have faired so much better on the reduced dose… so far. I’ll take any functional days I can get! Mindthief- I hope you’re turning the corner. Debbie, I’m glad to hear you are managing your symptoms.. naps are glorious. Hummingbird- we will be on the same routine now. We both have 8 left.
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Congrats for finishing up.
Just a heads up for those of you continuing with solo Herceptin.
So, I’d made it through 12 weeks of Taxol and H with relatively few issues. Finished on the 17th of November.
On Nov 23, I had the loading dose for Herceptin every three week dose over 90 minutes. My muscles hate it. Calves, ankles, hips are so sore. Not joints but muscles. Like my calves being so tight and never warming up/loosening up after walking for miles. It makes it hard to get up off the floor, out of chairs… I can walk around okay but it’s a notable difference in sore/tight muscle. And it’s been going on for two weeks.
Going to talk to my MO to see if a slower infusion is an option or even going back to weekly H which went really well for me.
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Hi all you strong women!
I am off for my last TC tomorrow AM. Mentally ready for my two weeks of crappy days, but I seem to have had less overall problems with my TC than those of you on AC & T. Been drinking an overflow of water to flush it out. Sometimes I just hate water, but oh well. I will have my radiation set up appt on Dec 20 then 3+ weeks of radiation starts Jan 10th. My oncologist is also going to be following me to prescribe hormone therapy. I've only seen her 2 times total since I started chemo, once to look at the rash on my head and feet, and once while I was in the hospital. She seems to run things through her chemo nurse. I don't expect I will see her tomorrow. Thank goodness I love my chemo nurse. I have very little live relationship with my oncologist/hematologist.
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