Starting chemo April 2023
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Hi All -
Happy Fourth of July! In way of observance, my hair took the initiative to free itself from my head! It wasn't like an all at once thing. It started a little bit yesterday and picked up steam throughout the day today. This would be day 12 of my first A/C cycle. The mouth sores and shedding mucus have increased a bit as well, so taking today as a liquid diet day. For breakfast, made a smoothie of things I had on hand (banana, frozen strawberries, pecans, yogurt that had managed to freeze in the refrigerator, and some quick-oats. Very tasty! For lunch, I had to get creative. Now I can't say this one looked appetizing, but if I close my eyes when drinking it, it's actually very good, filling and hits all the nutritional targets: V-8 juice, organic spinach, carrots a bit of onion, and kidney beans. The kidney beans provided not only fiber and protein, but also helped to thicken the concoction. I'm wondering if I can make a smoothie out of grilled cheese?
Bird - I think the water may be coming down (maybe via a pail) and not up. Actually, I hope it's not going up, or maybe that woman is having a really orgasmic experience. The antinausea drug sounds incredible. Though the dexamethasone is supposed to help with the nausea symptoms, the jitters it gave me were intense, so doc says I should cut down to just once a day. Thus far, nausea not as much a problem as the other sides.
Dogmom, Cat, Bird - I hope the call went well and hope you all have an awesome holiday! Keep up the spirit ladies….remember, we all got this!!!
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Thanks so much for the update Bird! Fingers crossed that it continues to be a non-event for you. I have chemo training tomorrow morning for AC. Guessing it will be focused on colony stimulating factor. Not sure which drug I'll be getting for that or which pre-meds. The oncologist didn't give me tons of encouragement with regard to scalp cooling and AC. I think having these past three months to adjust to the idea has been helpful. Whatever the state of our locks, we're all going to rock the look. We have the best support system going - each other.
I wrote down the Akynzeo game changer name. I'll ask about it in chemo training tomorrow. I share your goal of staying out of the hospital. We're past the half-way mark running towards the finish line! (cue: theme from Rocky)
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I totally didn't see your post when I posted Mouse. Apologies! Perhaps we were posting at the same time. Sounds like your hair was very patriotic and festive! Are you all set with head coverings? Bird shared a bunch of resources that she found.
Grilled cheese smoothie sounds good to me! Panera mac and cheese was a staple for my sister-in-law when she was in chemo. I think it was the supermarket purchased version that she liked. I made a big batch of one pan chicken with orzo. I deboned the chicken after it was cooked and froze portions of it. I also froze a bunch of chicken soup and spanakopita last month. I'm hoping that will get me through but from what I hear, there's no telling what direction taste buds will take.
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Good morning!
Mouse: I am sorry that mouth sores are plaguing you. Your smoothies both sound nice although I hope that you can enjoy solid food soon as well. I know they have a “magic mouthwash” that you can get by prescription. I was reading a study online and it seemed to fine that “oil pulling” and baking soda/salt rinses actually yield similar results. I’ll see if I can find it again because those are both cheap and easy. I’ve restarted both of those as apparently mouth sores appear (if they are going to) around day 5 after treatment. And I am sorry that your hair was liberated but you seem to have an excellent attitude about that from the get go and now you can rock a new look.NJ: I will be curious to see what you learn tomorrow. We give the shot tonight before bed. I’ve been taking Claritin and will add Pepcid in as well tonight and tomorrow as they seem to work together somehow to perhaps help. Along with the painkillers of course. I have some sort of strong Advil that was prescription and essentially Tylenol lol. Europe. But I do find they take things seriously so I can get stronger stuff if needed I am pretty sure.
Cat: I hope you are enjoying your week. How is it already Wednesday? One good thing about this is that the weeks seem to be going surprisingly fast.
Okay, I am still here today. I am still feeling pretty good. I was up early but that is typical. Freaking sun up at 3:30 or whatever is just hard. Our room is pretty dark but when I go out to the bathroom it is full on and then I am awake. I have neither diarrhea nor constipation at the moment so that is good. Subject to change. I am taking the milder anti nausea pills on top of the 5 day one. It does a pretty good job but at times I feel the nausea sort of lurking around the edges and so I add the top up just in case. I still have fairly normal taste buds and had my oat milk latte this morning like normal. My doc said it was best not to drink any alcohol the week after treatment or right before, but has no issues with 1-2 small drinks. But that honestly doesn’t sound great right now.
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Glad you are still doing okay Bird! Sun up at 3:30 am is unthinkable! Perhaps your husband can speak to someone about this. It's very unsettling for guests!Happy to hear that latte is still appealing. Coffee > Wine in my crunchy opinion. 😊
Chemo teaching was much the same as the first go 'round. Not a ton of information. Nurse practitioner had all sorts of positive things to say like "This is the big guns." and "I've seen a couple of people keep some of their hair with cold capping but not many." Other comment was "People have been getting this chemo for decades so no surprises."
No steroids the night before chemo. Take them after chemo - for 3 days. I asked which anti-nausea meds I'd get in IV - Aloxi and Emend. Start taking the Rx anti-nausea meds the next evening. Claritin once per day to try to keep bone pain at bay. If my insurance covers it, I'll go home with Neulasta onpro. If it doesn't, I have to come back to the hospital the next day for the shot. To be honest, I'd rather go to the hospital than be home alone wondering if I'm going to have a reaction. I may just go over there at the scheduled time if I have the auto-injection thing.
I've been getting pepcid with pre-meds. I think it's been part of the antihistamine routine these past 12 weeks. I'll ask the chemo nurse or the oncologist tomorrow. I find I get more helpful information from them than I do from the PA.
Just got an estimate on medical boarding for the pup at the other Vet hospital. It's $468 per day plus about $5k for the surgery. I think basic recovery is about 2 weeks. I'm not sure that it's financially feasible if the pet insurance doesn't cover it. Will see if I feel up to a long drive for a surgical consult and an updated x-ray to make sure there are still no lung mets.
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Hi gals!
Just wanted to check-in with everyone.
Bird: I am so glad to hear that so far you seem to be tolerating the dreaded AC/EC chemo pretty well. I hope that this has continued to be the case. How has the bone pain been for you with the Neulesta shot?
Dogmom; Is your first AC chemo tomorrow then? Fingers crossed for an uneventful infusion and hoping for minimal side effects. I am sorry to hear how expensive the surgery and care of your fur baby is going to be. I sure do hope that insurance can help offset if not pay for all of that. Ugh.
Mouse: Thanks for your great attitude on the hair (or lack thereof) that we are all facing or will be facing. I think you decided to not cold cap at all- is that right? Just curious. The whole AC/EC chemo does seem like hair loss is inevitable. On the subject of mouth sores, I have had only one or 2 here and there- very tolerable. I did buy "Helios" (Amazon) which is supposed to be really good for mouth sores.
Speaking of setting things "free", my 2 big toenails decided to do that last night and it was rather sudden (another chemo side effect). Went to the podiatrist today to have him finish the liberation. More soaking- twice a day for 2 weeks.
I'm off to Vanderbilt tomorrow to talk to Dr, Park about the HER2+ and HER2- mixed pathology on my primary tumor, and consequently his rec to pivot to AC chemo for treatments 5 through 8.
Thanks for being trailblazers on so many things but especially on the AC/EC.H
Hugs to all!Cat
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I will be back with more later. Just dropping this here. I got it from a FB group and decided to follow her recommendations as it made sense to me. Hubby gave me the shot last night and I still feel fine this morning. But maybe the pain comes later? Anyways. I think this makes sense. I always got Pepcid in premeds for the Paclitaxel so it must also help reduce inflammatory reactions. Anyways. Just reassuring all that we did it at home and it was easy and I haven’t have any reaction to it so far.
Starting
TWO DAYS BEFORE SHOT
Morning:
one Pepcid AC
Evening:
one Pepcid AC one regular OTC Claritin
DAY AFTER SHOT
Morning:
one Pepcid AC one regular Aleve
Evening:
one Pepcid AC one regular Claritin one regular Aleve
CONTINUE FOR FOUR DAYS AFTER SHOT THEN STOP.
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NJ: Thinking of you today and hoping all goes super smoothly. You’ve got this. Really. I love the nurse positivity 🤣🤣🤣. But yeah. No surprises are good. That is super expensive for your pup. I hope the insurance at least covers most of the surgery. Mine had good surgical coverage, but would not include the extra boarding. So that would be my expectation perhaps for yours. And thank you for the recipe. It sounds like a keeper. My taste buds seem normal at the moment. So, I have never been given steroids to take at home. They just give the IV ones as a premed. For me, this has meant no issues with sleep and my weight has stayed steady as well. I do think my face looks fuller, but I had weekly steroids for 9 weeks. Lol.
Cat: Big day for you as well! I hope you get reassurance from the doc at Vanderbilt and good information. So far, it has been okay for me. I am waiting for the other shoe to drop and expect this might change at any moment. But it seems doable so far. So, if the verdict is AC, don’t be too frightened. And good luck sorting out the toe nails. Blergh. My nurse said that docetaxel is notorious for that. Chemo really is the gift that keeps on giving.
Mouse: hoping that you are still feeling well and that the mouth sores feel a bit better.
Okay, off to get dressed and walk the dog and then lounge about watching Yellowjackets, which is horrifying and weird and a good distraction for me. Big day here clearly.
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Good morning!
Cat: Sorry to hear about your toenails and glad your podiatrist was able to assist. I hope it wasn't painful.
Mouse: Thinking of you! I hope you are resting and that the sides are staying manageable.
Bird: Thanks for the words of encouragement and the tips on the med schedule. I don't have Pepcid in the house but will try to pick some up on the way home from chemo today. I've already missed the two days before the shot. Eeek!
My neighbor who was going to take me to chemo today and stay with me through infusion seems to have forgotten her commitment. To be honest, I'd rather not have to worry about staying awake and being sociable. Just hoping I'm okay for the drive home. If not, I'll get an Uber and worry about getting my car later. The silver lining in driving myself is not having to negotiate staying at the cancer center a moment longer than I have to. I want to get home to the dogs.
Will try to check in later and let you know how it went. 😎
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I hope everyone is doing well!
Chemo was uneventful. It was a long day because we did extra iv fluids to flush the chemo. My Amalyse and Lipase were elevated but not high enough to hold off on Keytruda. I came home with Onpro and was given assurance that reactions are very rare so I'm not stressing over it. I feel hungover but without the nausea. I think I need a nap. 😀
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NJ: Thanks for the check in! I am glad all is uneventful and that you have the little device ready to deploy. My doctor did mention that some liver functions might elevate as we go through this next round. So hopefully yours are related to chemo, not the immune therapy. I am glad that you were able to drive yourself. I hope that the nap helped.
I am just really, really tired. Much more tired than I have been. Yesterday afternoon I also had this sensation where all of my body hurt. It was like I was bruised if I touched any part of me from my neck to my leg, but no sign of bruising. I think maybe it was a reaction to the Neulasta, but I feel better in that respect today. Nothing has been truly painful or achy so far. I am constipated now, yippeee. Of course. But otherwise, nothing too awful is happening right now. I definitely feel somehow less myself than I have so far. Blergh. Anyways. I am hopeful all of this will improve in the next few days. I was cranky yesterday too. Probably the steroid wearing off.
Cat: Hoping you got some good insight yesterday from the doc and that you are feeling okay otherwise. I am thinking that your next treatment is next week, right?
Hi Mouse!0 -
Bird: Sorry that you have body aches and that you are exhausted. Perhaps not as dramatic as some of the other sides, but they are annoying and are quality of life issues. We can do this. We can rest and let our bodies recover. It's just a bunch more weeks like the first round of chemo. A bunch of dates to cross off on the calendar. I've been trying to equate how exhausted I feel to how exhausted this cancer must be at this point. Perhaps not a real measure but I get some comfort from it. 😉 I think the numbers are related to pancreas function and are on the monitor list for Keytruda. They've gone up before but went back down. The oncologist scheduled more labs in 10 days to monitor these. I've felt like I had a college grade hangover since chemo less the good memories of a night out and the nausea. I honestly anticipated bed spins but didn't have them.
Cat: Thinking of you and hope your appointment was helpful and provided some clarification on your path forward.
Mouse: Hope you are feeling better and that the menu continues to be inspirational!
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Ooof! Bed spins are the absolute worst! Please none of that, thank you. 🤣
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Hi Gals,
UGH!!!!! I touched something on the keyboard and just lost all of my typing. So frustrating! My daughter suggested I type my entries in WORD and then copy and paste. This is what I am trying now as I type- AGAIN! Grrrrrrr.
Mouse: Hope the mouth sores have abated, that you are feeling okay, that the hearing devices are in production, and that you are doing okay with the “Hair Farewell”.
Bird and Dogmom: Sounds like you are tolerating the EC/AC but that The Sides are more pronounced. I hope all three of you are feeling okay with the AC/EC. How is the leg pain? I have definitely found my baths with Epsom salts very helpful in this regard.
Speaking of…..Bird: Do you think the timing of the Claritin matters? I’ve been taking Claritin in the am. I haven’t been taking Aleve but I think I’ll get some of that (probably Amazon as I haven’t ordered anything today- at least that I can remember. Ha!)
AC/EC: Are you all doing the dense dosage? Dr. Park at Vandy has recommended I do the EC dense version every 2 weeks. The oncologist in ATL agrees with pivoting to AC after this week’s treatment (yup, you are correct Bird, chemo #4 TCHP is this Wed 7/12). Not sure yet if the onco in ATL agrees with the dense doage. Have asked for clarification.
Not too much else going on. Felt puny and exhausted last night. Took to the bed for a good 4 hours. Not even sure what I did other than stare off into space. Feel much better today but am also more able to pace myself unlike yesterday with the trip to Vandy.
My big toes look pretty good and I think they are actually healthier now. I’ll leave it at that.
I’m looking forward to going away to the mountains for the weekend in a couple weeks (my birthday!). My daughter and I are going to have massages at a bougie spa and I’m looking forward to this. I rented a house on VRBO for the weekend. Most importantly, I have my own bathroom with a tub and it’s only a 2 ½ hour drive to Highlands NC (and 10-15 degrees cooler) from ATL. My son (Atlanta) and hubby will join us for the weekend. All low key. Too tricky for Dallas son and his wife to join us.
Okay- that’s all I have for now.
Hope everyone has a good weekend with very minimal Sides!
Cat
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Cat: Happy the doctors are in agreement on your path forward and that Dr. Park went the extra mile to do additional pathology. I'm doing AC + Keytruda every 3 weeks for 4 cycles. Last cycle is scheduled for 9/7. Then surgery, radiation and more Keytruda. I'm taking Claritin before bed per the instructions given by the PA. Pepcid wasn't included in the instructions so I asked the oncologist. She said I can take it if I want. You vacation sounds fun! Bring a couple of dishwasher tablets if it's a jet tub!
Nulasta Onpro beeped and started ticking like a time bomb around 5:45 this evening. It ticked for about 45 minutes then stopped. It was uneventful. I didn't explode.
And since we have absolutely no boundaries here - pee was back to normal color by noon today. It started out as Benjamin Moore's color of the year:
Expecting sides to kick in tomorrow.
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Cat: I am not on dose dense either. My doctor said I could do it if I wanted, but that it wasn’t necessary so I went with the normal schedule. He said, in my case, it would essentially be a matter of whether I wanted to finish sooner rather than it being beneficial for my particular situation. They have stopped my PHESGO shots while I am on EC because they are both hard on the heart and don’t play well together. So I have been to Highlands quite a few times. My MIL lives right near by in Franklin so Highlands is a fun, “fancy” place to visit. That whole area is much more developed than when she moved there over 10 years ago. I am so glad you have something to look forward to.
NJ: I am glad the Onpro was a non event. So is it attached via a tiny catheter or something? Then it goes off whenever it is time and injects the meds? Just trying to picture how that works. I hope you don’t feel too awful. Like I said, it was weird for me because it didn’t feel like bone pain per se, just more like all over pain that didn’t ache like I expected.
Feeling pretty normal today except for the constipation. And since I have been taking stuff the last couple of days for it I am hesitant to leave the house until it is sorted. We are thinking about going into the city and I want to do it. So, fingers crossed we can sort this. Ugh. Seriously. Always something. Especially with digestive stuff.
NJ: I am creating some mantras that I say to myself. I have added your “I am tired so my cancer is as well” to that. I also tell myself that my body will take the chemo with minimal side effects because it is necessary and what we need right now and we both accept it and it’s power to heal us.
Okay, have a good weekend all! We might drive the Finnish archipelago trail the weekend of the 22nd. It is our 29th wedding anniversary on the July 30 (but I have next chemo the. 25th so we want to celebrate early). It is supposed to be lovely. Little islands connected by ferries. The kids don’t want to go so a solo trip.
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Oh, and this is weird, my scar seems to react much better to EC than to Paclitaxel. It is less red and irritated and has settled back down to its pre chemo state. I mean, this could change at any moment, but I am pleased that it feels less like it is trying to rip my stomach apart.
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Bird:
Glad your scar is settling down and that you're feeling more normal today. That sounded so uncomfortable. Glad that you are planning an outing today! I'm trying to figure out when we are at highest risk for infection during these three week cycles. It was one of the things I intended to ask but chemo brain and all, I didn't.
Onpro has a tiny cannula that attaches when the nurse places the device. Perhaps the lightest jab I've ever felt. It was placed on the back of my upper arm. 27 hours after it was placed, I heard a chirp and then it started ticking. It ticked for about 45 minutes while releasing the med. I used selfie mode on my phone to check the status and made sure to keep the phone at least 4" away as it seems electronic devices can mess with it. I checked that the dose was delivered via the empty line, the light was green so no malfunction and I peeled it off. No pains this morning. Not sure when to expect those to happen.
Feeling exhausted. I need a nap. Have a great weekend!!
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NJ: I did ask that and they said that the low point is typically a week after chemo, but that they hope that with the Neulasta nothing will drop really low. I definitely feel better every day that we move away from chemo day. Not quite as exhausted. I am pretending that is because my body is slamming out white blood cells.
I did get out and about. Just for lunch and we found a record and I picked up a linen scarf hair wrap that I had ordered. It is raining so then we came back and napped. Ha.
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Hi Ladies,
I feel like I've been gone ages. This was a busy week. 2nd round of A/C on Thurs., Fulphila (like Neulasta) yesterday, then got fitted for a mastectomy prosthesis and bra that same afternoon. Picked up the hearing aid today. What a difference that makes! I can actually hear the sound of rain, the car blinker, sound of birds. This in itself is a game changer for my attitude. No N/V/D (nausea, vomiting, diarrhea) or bone pain (yet). For all taking Pepcid, it's a histamine blocker at the gut level, but works in much the same way as Claritin (loratadine). It also helps with any gastro upset you might get from the corticosteroid.
NJ - I love your take on kicking the cancer to the curb. Even superheroes need to rest after taking on the villains. I've definitely taken this perspective. Since the hair loss and the realization that I look like a cross between Yoda and Aelred, I've assumed a new identity….warrior elf! Ordered some double-sided ear tape so I can go incognito and ordered makeup for the first time in 25 years (warriors must have war paint!). The Onpro sounds weird and interesting, and glad it worked as expected.
Bird - Outings, even if it's just driving around to look at trees or the shoreline are something to be anticipated, experienced, and savored. Early happy anniversary. We are having our 49th on 7/27, and I'll be happy just to get a Pacific Veggie pizza from Domino's….DELIVERED! Good that the scar is settling down. I haven't done the paclitaxel yet, but most of my scars are healing. The surgeon had an aborted attempt to place the port on the left side (due to the implant that's there) and successful on the right. The right is almost completely healed, but the left one still has some rather nasty looking areas. I suspect there might be a suture working its way to the surface.
Cat - I am on dose-dense A/C but it is overall tolerable. My blood work is looking pretty good with it (a little low on all white counts, normal platelets, etc, but nothing off the charts. I am low on sodium, which would explain why I was dizzy last week. Happy early birthday! So glad that you are doing something special for yourself. I'm also glad to hear that you are getting your treatment at Vandy. They have a world-class oncology department. My oncologist considered reducing my dose of Adriamycin by 20% due to some of my sides, but I didn't feel that they were so bad as to warrant the reduction. The mouth sores are still a problem, but she called in a Rx for Magic Mouthwash. It really helps with the pain and is helping to heal some of the ulcerations, but I'm continuing on the smoothies, mac and cheese (thanks to suggestion from NJ), etc. I have these huge Glorious Morning Muffins in the freezer, just begging to be eaten….so I'm thinking a GM smoothie?
We're all crushing it here ladies. Even when we have pain and sides, we still have each other and less of the cancer. Our chemo treatments are our weapons against our cancer, not us. The positive energy we collectively bank here can replenish one another when needed. Karma….it doesn't always bite. I'll be returning to work on Monday, so I may not be posting quite as frequently but will touch base as I'm able.
Mouse, elven warrior
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Mouse: I am so happy that you got your new hearing aids. That is huge! Thanks for the info on Pepcid. That totally makes sense. And can I say what an awesomely tough lady you are! Dose dense EC plus returning to work and moving through it all so positively. Very impressive and inspiring to me. You are indeed an elf warrior 🤣. I am glad that you are almost healed up surgically. And morning glory muffins sound delish. I have SO many smoothie recipes but they haven’t appealed that much lately. Today I was desperate for a burger. Well, a halloumi veggie burger, and some fries. So we did go up to the mall for a fix. I have also been fixated by the thought of Frosted Flakes. I am not sure why I want them or whether they even have them here. Ha. Wishing you a side free weekend and a smooth return to work.
Not much here. We went out and bought a few plants and had lunch. Then I came back and napped of course. I might make peanut butter oatmeal chocolate chip cookies this afternoon. We will see how much energy I have.
NJ: Hoping you are feeling okay and enjoying those naps.
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Good morning everyone!
Just back from a nice walk with hubby and the dog, overcast in the ATL but made for a nice cool walk. I was thankful to be able to get out and walk as that has been a challenge for me with the Sides in the am. I went out yesterday morning (turns out prematurely) and couldn’t wait to get back home! Know you all GET IT and Bird, hope you were able to get yourself sorted so that you could leave the house.
All: Thanks for the updates on the particulars of your EC/AC regimens. It really is so helpful, reassuring, and comforting. You all seem to be handling the EC/AC well so I am encouraged and inspired. I know Dr. Park wanted the AC dense dosage for me for longterm prognosis purposes, something about not giving the cancer a chance to recover. Fortunately, my onco in ATL agrees. It may be related to my being both HER2+ and HER2-. Mouse/Warrior Elf: I am actually doing my chemo in ATL but Dr. Park has been my second opinion doctor who frankly is fabulous! I also have a team at MD Anderson who have done some biopsies and have also offered second opinions. It’s a bit confusing- even for me!
Bird: Glad your scar is doing better! Yay! I’ve actually been to Highlands and Cashiers many times. Very fun that your MIL has a place there. It’s crazy to me that with a 2 ½ hour drive from ATL you can be in so much nicer weather. I am looking forward to the change of scenery, the spa and the cooler weather. Dogmom: great idea on the dishwasher tabs but I am thinking no hot tubs. I was truthfully a bit leary of them pre “little c”.
Dogmom: Thanks for the info on when you take the Claritin. I am going to try it before bed now. Also, I started on Aleve yesterday and I think it really has helped more than the ibuprofen with the leg pain- thanks! Also, I am adding “I’m tired so my cancer is as well” to my mantras- LOVE IT! The Onpro does seem a bit weird but glad it is working as expected. LOL about the red pee! How is your fur baby doing?
Mouse/AKA Warrior Elf: so so glad about your hearing aid. I just can’t imagine how awful your surgical experience was in particular not being able to hear the doctor. YAY for 2 of the AC’s down and 2 to go!?!
That’s about all for me right now. Friday night I went out with hubby, felt fine and had a couple glasses of wine. Last night, I felt puny and took to the bed (as we say in the south) for the night. I’m glad to know of your similar experiences because it is crazy how I can feel pretty normal one night, then not have the energy to walk down the hallway another night.
Monday call: I realized yesterday that I have an 11:00 appointment tomorrow so unfortunately I won’t be able to join the call tomorrow but hope to the following week.
Hope everyone has a great, Sides-free Sunday!
Xo
Cat
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Good morning all -
Bird - Those cookies sound so good! I such a cookie addict but will have to wait on that until I can do solids again. Good to get the cravings (veggie burger and fries) taken care of….one more devil you don't have to face). Beyond Burger makes a really nice veggie burger that tastes like the real thing. My problem is that I've never truly bonded with hamburgers (maybe because my mom fired them in a frying pan and was a dreadful cook…God rest her soul). I love sweet potato fries, and as a couple of recent gifts to ourselves, we obtained an air fryer and a George Foreman grill. My life has forever changed!
NJ - I take Claritin every morning (generic loratadine) for my allergies anyway. This way, I'm sure never to miss a dose, and it is one of those antihistamines that don't make you drowsy and works for 24 hours. I hope your weekend was good and you've managed to get the rest you need.
Cat - Yes, 2 more of the AC to go and then start the paclitaxel. I know some of you have had that one already, so I have a chance to hit the ground running and not wondering about the sides. Hearing is wonderful. The aids don't stop the ringing (that's permanent damage), but it does bring other sounds to the foreground. I'll try pairing it with my cell phone today and hope that I can use Blue Tooth. I get confused when there are too many devices to deal with. Yay for going out Friday, but boo for the puny of the following day. Two glasses of wine for me before chemo was enough to put me out for the count. There's always the worry that the other shoe will drop, so I've switched to sandals…lol. Hopefully you'll have a restful rest of your weekend.
Enjoy your weekend my feathered and furry friends!
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Hey friends! Good morning! I am still feeling pretty good. Just more tired. I found that a short walk with my husband yesterday afternoon wiped me out, as did household chores this morning. Tidying a bit for the cleaners coming today. Isn’t that always how it goes? I definitely have weird picky taste buds. I am still eating like normal, but have more cravings and can’t eat a lot. I usually drink sparkling water anyways and have a machine for it. That is a good thing as it def tastes better to me than plain water. I’ve dropped a couple of pounds since starting EC which surprises me. I am a long way from being gaunt (ha) but my oncologist doesn’t like to see loss. I had a full bowl of strawberries last night with homemade whipped cream so I am doing my part here.
I can jump on the call today for a bit if NJ is available or I am happy to change times.
Mouse: Happy first day back! May all go smoothly and you have good energy. I’m not a big burger person either. They often make them here with halloumi cheese, which is a grilling cheese and I like those. I also like homemade black bean ones with guacamole.
Cat: Does MD Anderson not recommend the AC? It must be some juggling with so many opinions. I like that there are 3 though as you can take the 2/3 approach. I’m with you. I love hot tubs but wouldn’t do a public one right now. I would do a private one that I clean.
NJ: Hoping you aren’t feeling too yucky and that your sweet pup is doing okay. Hopefully this gives you an idea of how this will play out. I’ve heard that AC tends to follow a formula in the reactions each time. But that tiredness can get a bit worse. I guess we will see. I feel better every day and more reassured that this isn’t the debilitating event that I feared. At least so far.
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Good morning gals!
Good morning from the tub in fact. Last night the Sides popped up (I envision them like the Sirens (AKA “Mean Girls”) calling Ulysses!) & woke me up at 12:30 & again at 5:00. Nausea & leg pain but I got up, took some medication & then hit the tub for the leg & bottom pain.
Improving & tolerable. I felt SO good all day yesterday it was wonderful, then the Sides late at night. For me it doesn’t seem like I have a day without the Sides at some point. Have you all experienced the same?
How’s everyone’s leg/body aches with the Neulasta/or the equivalent thereof? I have found the leg aches a constant. I’m going to try the Claritin at night (why not?). I do think the Alleve is helping.Is Metamucil helping anyone?
Bird: can you share your black bean burger/guac recipe? I love black bean burgers & don’t have a good recipe. Thank you!
Glad you are feeling ok, tho I know the fatigue is no fun.Mouse: I have thought about trying a more liquid based diet with the GI challenges I’ve had. Can you share your decision or your medical team’s decision to do this? How’s it going for you? Apologies if you’ve already posted about this. I’m on my phone & scared to death I’m going to lose my typing! Ha! Also, glad you are feeling OK in general. Hope your day back at work goes well today.
Dogmom: hope you had a good weekend & are feeling ok as well. Hope your fur baby is comfortable & giving you lotsa love. My cat, Birdie, was very busy grooming me last night while my dog, Lucy, “protected” me at the side of the bed. I really believe these fur friends can sense & smell that I wasn’t doing so great last night.
MDAnderson: it’s unusual to have these second & third opinions so by way of explanation….. My husband has worked in healthcare technology for 25 years so has lots of healthcare contacts, one of whom is a cancer patient advocate. This advocate, Steve, is the person who wanted me to see Dr. Park (Vandy) as well as Dr. Valero (onco) & Dr. Meric (surgeon) at MDAnderson so I did & continue to confer with these doctors. Steve wanted me “plugged in” at both places. I don’t know what Dr. Valero will say yet (I see him next Tuesday) but 2 out of 3 AC opinions makes me agree w AC. I might not theoretically go to MDA just to see Valero (none of these doctors do virtual, probably not legal Texas to Georgia) but I’m also seeing the surgeon at MDA next week as she seems to have more nipple sparing tools in her toolbox than my ATL surgeon has & my primary tumor (I have 6 in the right breast Mouse- multicentric carcinoma) is about 2 cm from my nipple.
Sorry to miss the call today.
Sending virtual hugs to all!
Cat
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Meant to add, Mouse I’m so happy for you that you have your hearing aid! I know with my mother her hearing aids were fabulous & made all the difference in the world! I know I’ll be quick to get them if the need arises!
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Cat: I hate to say this out loud, but I haven’t really had aches with the shot. Just the weird all over skin pain (only hurt when pressed) the day after the shot. It went away by that evening and I stopped taking Aleve the next morning. I do take Claritin daily though. I started due to Paclitaxel random rashes and have just continued. I overdosed and took two a day the evening before, day of and day after Neulasta shot. I am sorry your sides woke you. You might actually find AC a bit easier than TCHP. Especially in regards to the diarrhea side.
Sharing recipes here. This is my very favorite black bean burger. Definitely spicy though. Can you believe I can buy canned chipotles in the grocery store? Finland is so random.
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Mouse: You are truly an elf warrior! I am amazed you are able to return to work. Please do remember to be kind to yourself and get lots of rest when you are able. So glad the hearing issue is resolved.
Cat: This is day 5 post first round of AC. Fatigue has always been the worst of the sides for me and it went up a notch with AC. I think I slept about 16 hours per day on days 2, 3, 4. I had interrupted sleep, likely because of the steroids. I haven't had bone pain from the Nulasta yet. Just a general icky feeling and sore neck muscles the following two days. We'll see how day 5 goes! Yesterday was the last day of 8mg of Dexamethasone per day. They seem to have worked their magic. We shall see! I have the other two meds for nausea if needed but haven't taken any yet.
Bird: In a holding pattern with the dog. Much like people "c", it seems to take time to get appointments and momentum. I'm trying to work out getting help with post-op care for him from the vet techs at his normal vet but haven't gotten a call back. Will try again today. The vet oncologist added a third pain med to his daily cocktail and it seems to have really improved his quality of life. The tail wags! He's barking at the UPS guy and he even played tug for a couple of minutes. It seems to have given him some of his dog joy back. Thanks so much for asking.
Bird: I've lost 11 lbs. since starting chemo. No concerns there! I could lose 22 more and be happy about it. I noticed I wasn't loving water these past few weeks too. Even bottled water doesn't taste quite right. I've taken to using frozen watermelon or berries along with ice in my water bottle. I make sparkling water too but was thinking too much carbonation might mess with nausea so I've cut back a bit. Whatever works! Hydration is so key to getting all these drugs out of our system.
Shedding continues. No major bald spots yet but I have had to shift the part in my hair a couple of times.
Not sure if you're available to chat now Bird but if you'd like to, I'm around. If not, I'll aim for noon eastern.
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NJ: I can definitely chat a bit earlier. That is easier for me. How is 10 am? Does that work? Cleaners are here now but will be done in just a bit.
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Good morning!
I am actually contemplating a trip to the grocery store today. I want to get some salmon and fresh fruits and veggies and pick them myself. I’ll go early afternoon when the store is not crowded. Otherwise, same old, same old. I am sleeping quite well I have to say. I can’t stay awake past 10 and then have been sleeping pretty much straight through to 7:30/8. I do wake with night sweats a few times, but go right back to sleep. Seriously though. I’m so wet. It’s like I showered. Icky.Sides: NJ and I chatted and we both had a hangover type feeling for the first 2-3 days after treatment. No actual nausea or vomiting or anything. And I have a persistent nasty metallic taste in my mouth that only goes away when I eat or drink something with a strong taste to chase it away. Those plus the utter exhaustion seem to be the most pervasive sides of AC/EC right now.
Attaching a couple of pics of the countryside from my walk. These wildflowers are now in bloom everywhere and they are so gorgeous. Even on a gloomy day (this was Sunday, today is gorgeous). And a pic of my current fake it until you make it look. This crazy sticking up hairstyle that I wake up with disguises the worst of the balding bits for the moment. But I am terrified to wash it. Plus, looking at it wet after washing shows how ravaged it is. Blergh.
Cat: I hope you get lots of good options for your surgery and some good info from the doctor as well. It is useful to have you plugged in so many places as I am always interested to hear treatment options and such. My IDC tumor was also found in the nipple area but I don’t think there are as many preservation options here.
NJ: Hoping you hear back from some vet techs with some positive helpful news. But I am really glad that Bray is wagging his tail and feeling better
Okay, hoping all have a nice, side free day!
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