Chemo starting June 2018
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congrats out_and_about on your last TC - my last TC is dripping right now and I'm going out for dinner tonight to celebrate. Even though the SE will kick in for the next week or 2 just being able to say "last" something should be celebrated. Stay strong ladies - special thoughts to those that have a much longer chemo treatments!
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Yay! to those who are finishing up chemo. Truly excited for you.
I swear my MO and a nurse in the infusion room are going to get a kick in the shins by me. Both of them said Taxol will be easier than AC. Both have been hard. I don’t like the pain I was in a few days ago (after my first DD of Taxol) and now I have a bad rash that started under my breasts and has now spread to my torso. I left a message on the nurse line to see what I need to do for this new SE. The fatigue has been annoying as well. Whine, whine, whine...
Gotta keep moving forward.
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RosieRed I’m on taxol but weekly doses and agree that the pain in the worst part! I can’t imagine what it’s like for you. I feel like I got ran over by a truck!
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An update: I had ultrasound on Monday. Today I went for followup with both the oncologist and the surgeon (plus a bag of fluids). So, apparently there is no way to know how much of the mass is tumor, some may be mucus, or necrosis, or, whatever else. Only removing it can tell definitely. However, both docs are pleased with the results of the ultrasound and my treatment plan remains unchanged: 2 more rounds of TCHP followed by surgery and rads and continued Herceptin/Perjeta blah blah blah.
It's all still somewhat confusing. The manual measurements done in-office before each chemo are (understandably) different than the precision of an ultrasound. Basically the mass is the same size now as it was in April when I had my first ultrasound. BUT we know it grew between April and June, when I started chemo. So from that standpoint we agree that chemo has shrunk it. But there's really no way to know just how much. Both docs are happy that it's "stable". So I'll be happy too.(3 lymph nodes involved, all have shrunk also)
I'm super glad that I'm in the hands of two docs who are super knowledgeable, take all the time I need to get my questions answered, and today I was floored when the surgeon said to me that it's ulltimately my body, and my decision, about surgery. (I told her I do NOT want a mastectomy, just a lumpectomy. Also that I will follow her advice but I feel strongly about this.) She is super supportive as is the MO. I know not everyone is fortunate enough to have this relationship with their docs and I'm so grateful that I'm in their hands.
This 4th round of chemo kicked my ass, I was down completely for almost a week but feel like I've rounded the corner and am ready to head into the chemo home stretch, 2 more to go. Congrats to all who have completed theirs and to the rest: WE GOT THIS!
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Today I got my blood count results and met with my oncologist preparing for last TC tomorrow early morn. Everything came back very good and strong. He said my surgery in four weeks is okay if I stay on this trajectory. The receptionist said I'll get to ring the bell in the infusion center tomorrow when I'm done. When he told me it brought tears to my eyes. I'm conflicted and a little embarrassed about ringing it though knowing that my 12 week 4 session schedule has been so much easier than many of the people in that room and some of you incredibly brave women (and men) on this forum.
kat22: I know it's still up in the air in some ways but it sounds like the news was hopeful and I'm glad that your team is capable and empathetic. It's so important to trust our team and feel safe as can be expected under these circumstances.
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How's everyone doing with tastebuds/eating? I never really recovered them from chemo#3, and with chemo #4 last week I'm in a state where food texture (pretty much any food) is so disgusting that I've been relying on nutrition drinks and have eaten very little for the last week and a half. Nothing tastes good, which I got used to, but this new aversion to anything with more texture than, say, mashed potatoes, is awful. Anyone else?
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Kat22:
A lot of my taste changes were from the Aloxi. Zofran also has caused it for me but to a lesser extent. They cause an actual bad taste in my mouth. As for the chemotherapy, what that seems to do is, a few days out, my taste begins to become attenuated. I will then have one or two days where I can barely taste anything at all and then it starts to come back rapidly. I had Zofran intead of Aloxi for infusion three and had almost normal taste the last week and a half of a three week cycle.
But somewhere around the beginning of week two I got some frozen yogurt because I really needed it. Strawberry and non dairy watermelon sorbet...the strawberry was a little off tasting but tolerable. The watermelon sorbet tasted like dog doo.
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WC3
I got pretty used to having no taste buds for about 10 days post-chemo. Found that cold and fruity things were the best. Now I also have a bad taste in my mouth that never goes away and the aversion to texture. It's awful. I did have a "smoothie bowl" today at the infusion center which was phenomenal, maybe just because I actually could taste it and I was so desperate for the act of eating. It was mixed berry smoothie with fresh sliced strawberries and granola on top. Only thing was the granola, I'd skip that next time. The nurses were teasing me because I was enjoying it so much LOL
The only thing med-wise that's changed is that I started taking Lipitor a couple weeks ago. Have only had one dose of Zofran in a long time.
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Kat22:
I get texture issues as well. The Aloxi was IV Aloxi that was part of my pre meds. It caused a bad taste in my mouth that lasted most of my cycle. I was switched to IV Zofran for my third infusion and the bad taste only lasted for a few days but a little more delayed nausea....I had a day of moderate nausea about 5 days out., but it I prefered that to having a bad taste most of my cycle. I have Zofran tablets to take at home and they cause a bad taste as well but to a lesser extent and shorter duration than the the IV Zofran and I typically don't need to take more than three, and only need them the first week.
Aloxi and Zofran are in a class of medications called 5-HT3 antagonists and can attenuate the signals from the taste buds. For my previous infusion I was switched to IV Emend, which is in a different class. I thought I would be given that for nausea only but they also gave me IV Zofran again. If the bad taste lingers for more than a few days I am going to ask if I can do IV Emend without the IV Zofran next time.
As a side note...to reverse the effect of Aloxi or Zofran, you need a 5-HT3 agonist. The only readily available safe one for humans is menthol, which can be found in mints flavored with actual peppermint extract (do not consume peppermint essential oils, they are not for human consumption and can be harmful) such as can be found in the original peppermint Altoids. I hate Altoids but I gave them a try...I'm not sure if it helped in the manner above but at the very least it masked the bad taste for a while.
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WC3 Hmmm good info. I have to admit, I'm not sure what all my premeds consist of. I should know that and will inquire next time. In the meantime, I will get some Altoids to try. Can't hurt.
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I don’t have a texture aversion, but my tastebuds have really been dull, so I’ve been eating some bizarre things just so I can taste things even just for a little while. Don’t read my list below if mentioning food makes you queasy.
Things that I’ve been eating or drinking:
Orange Juice, turkey bacon baked Lays potato chips, Fritos Scoops, cantaloupe, fresh tomatoes from the garden, green olives w/ pimento, pickled herring in sour cream, tuna on saltine crackers, LemonHeads, Sour Patch Kids, Altoids.
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RosieRed:
I've been wanting green olives and similar salty and soure things as well. The issue is I have not yet gotten my acid reflux and sore esophagus under control but I just had infusion 4 and am trying harder this time. I started taking the omeprazole (Prilosec) five days before the dexamethasone and am supplimenting with Zantac (H2 blocker) inbetween when needed though I might switch to Prilosec OTC which I hear works better than prescription Prilosec, and a different H2 blocker but I typically have good luck with Zantac. We will see this time.
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If I could have only one thing in my fridge it would be lemon yogurt during my bad taste bud week. My oncologist said that taste bud cells rejuvenate very quickly so one day it can be awful and the next completely different.
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I tried Altoids last night. Helped take away the bad taste for a bit. And had Fritos earlier in the day. I loved the saltiness.
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congrats to everyone finishing up chemo! I’m jealous haha. Just had round 4 TCHP yesterday and am getting ready to go back down the SE rabbit hole. 2 more rounds to go. I tried to talk my doctor into only doing 4 rounds but that didn’t fly.
Still have some hair left from cold capping. Mostly on top. The bottom and sides have disappeared so it’s a little interesting getting ready in the mornings.
Taste buds seem to usually disappear for a week or so and then they come back. I like fruity things during this time too.
Kat22 I’m rooting for you! And all the rest of us too!
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ok ladies I need some help/advice - just had 3rd round TCH on Monday and once again super bad constipation - last round I used Senekot and it still took 6 days for a bowel movement - onc told me to try lactulose which I’ve been taking everday since Sunday but here I am again - uncomfortable and feeling gross due to constipation - any help would be greatly appreciated
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Bheg79:
I haven't had this problem. It might just be differences in bowel function...everyone's is unique, but do you eat much around the infusion? I do a bit of a fast the day before, of and after the infusion because I heard it can alleviate symptoms and the dexamethasone spikes my blood sugar so I can't really eat without it getting too high anyway. I am able to eat fairly normally the week before the infusion and I eat a lot of cooked vegetables so I am kind of cleared out by the infusion. My esophagus gets sore after the infusion and so I eat a lot of egg white sandwiches, soup, and soft textured things in the days after the infusion starting on the first day I don't take the dexamethasone.
I tend to start getting stomach cramps after day 10 though which can be bad if I am not careful, and a bit of diarrhea but not as bad as some here.
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Bheg79, I drank Smooth Move tea for the constipation. I took it at night and was able to get bowel movement the next day. I took it as needed.
Wc3, I was told to have something to eat while taking dexamethasone so even if I know fasting can help, I still have to eat for the steroids.
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Popcornme: I do have a bit of something with the dexamethasone. Today had half a turkey cutlet with it. Wednesday I had some egg whites and 1/8 of a bagel with it.
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WC3 - I do eat normally right up until my infusion & once I can get past the first week of extreme constipation my bowel movements become regular again it’s just trying to find the right mix of what to do or take to avoid the constipation is the tricky part for me
Popcornme - I am picking up some smooth move tomorrow - I’ll try anything at this point.
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Bheg79, try Colace. 3 pills a day work for me.
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InnaB2018, how is your 2nd Taxol. I just had mine yesterday so today is no side effects day. I'm doing preemptive Claritin and am also prescribed Oxycodone this time. The onco said to take it even before pain starts to manage it better. I also got ahold of some transdermal CBD oil. I will see if it helps
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Chiming in on the taste conversation. I'm not sure if mine is worse this round or if I am just being crankier about it. I had a lot of trouble figuring out what to eat yesterday. I tried a smoothie which was bland, but did not taste bad at least, because fruit and cold seem to be ok. Sometimes I try to have a bowl of lentil vegetable soup for protein and iron, but since my appetite is decreased, I often skip the side dish. I don't really like anything dry, so chips and crackers are not cutting it. I had tofu pad thai last night because I had noticed that lime juice improves certain foods, and it comes with a lime. It worked ok because it basically was wet noodles with peanuts and lime juice lol. I am thinking I may be craving pancakes with fruit, so I may give that a try today.
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Popcornme, I had mine on Wednesday. This time I went to acupuncture before and after the infusion. I feel crappy, achy, but not as bad as last time. Had horrible itch in my legs and arms on Thursday, was put on Benadryl. 24 hours later the itch went away. I am fatigued and faintly nauseated. Fainted once.Also have tingles in my feet, hands and lips, but they don’t bother me that much. Pain is more manageable this time. I only took Tramadol once yesterday, didn’t take it today yet. Overall, yay for acupuncture! Will definitely do it again. My therapist promised to protect me from neuropathy too.
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out_and_about:
Funny you should mention lime juice because I typically hate it, but the Aloxi I had for my first infusions altered my taste such that I could only drink lime flavored sparkling water. I knew it was wearing off when I started hating lime again.
I had another interesting experience. I hate grapefruit. I typically think it is bitter. But I bought a Daisy Mandarin, which I had never had before, after one of my infusions that I thought tasted like grape fruit and for some reason I thought it was halfway good.
The 5-HT3 antagonists seem to attenuate my ability to taste bitter.
I also had some horrible rice after my third infusion. I am still trying to figure out how something with no taste can taste so bad.
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InnaB2018, I'm glad you feel much better this time! I didn't know acupuncture helps a lot. Do you get it from MSK? Is it covered by insurance?
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Bheg79: I take Miralax starting the night before my infusion. I take it the morning and evening of my infusion and the morning after. Zofran is very constipating. As long as I'm on it I'm taking Miralax. Once I'm off Zofran at about day 3 I manage with phsyllim seed husks in capsule form and cal mag pills. Also lots of fresh salads and berries. There is always a weird transition day on day six when I start my antibiotics where I transition from constipation to diarrhea. It's a bit of a balancing act.
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Popcornme, they do offer acupuncture at MSK, but I am going to someone i’ve Been going to for years. Insurance might cover it, but it depends on a practitioner whether he takes your plan.
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Thanks for the info, InnaB2018! I will look into it. I've never done acupuncture before
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I'm getting hit a little harder with the side effects this time. Has anyone had really sore neck, chest, back, jaw, almost like it's bruised and tender? I had the neulasta yesterday so could it be that? Also, my throat feels like it's been burned and really hard to eat and my hands are burning
help!0
