July 2020 chemo club
Comments
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Nottoday, not sure if you are talking about ALT and AST liver enzymes or the ALP (Alkaline Phosphatase). I don't know much about ALT and AST except that I think it's not unusualfor them to rise during chemo. The ALP, which is the scare i had recently, can be related to liver and bones. I got scared because mine started rising before I started chemo, so I knew it was not chemo induced. That's what prompted my recent Pet which was thankfully clear. Both my MOs have said the ALP is a very non specific indicator that can rise for lots of non cancer issues like inflammation. They said not to worry about it. Basically, I was the one getting myself scared about it, not them. They don't get concerned until it gets pretty high, or jumps up fast. I still worry about it, but they tell me not to.
Thanks to everyone who posted encouraging me before #3. Sorry I've been MIA. Didn't have the energy to respond. #3 kicked my you know what.
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Nottoday, must haves for mastectomy was something to hold the drains. That part was a huge PITA, and I didn’t want my daughter having to see them. I was afraid it would scare her. I got a waiter apron, stuck the drains in the pockets then tied it on backwards at my waist (with the pockets and drains inside up against my body). Then I could wear a shirt over the top of the apron so it barely showed. Hated that thing, but it worked. Also must have was a bunch of pillows to sleep upright.
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Ampmusic, welcome. I also just finished my third round of TC and it was emotionally, physically and mentally rougher for me too. Much harder than the first two, in every aspect. I also am capping. That was rough last time too.
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Brittonkb, I hope all is going well for you at your infusion today.
Ampmusic14, welcome. I am sorry you are having a difficult time with this round. I hope it eases soon.
KMom, sorry to read this round has been difficult for you, too. I hope you feel better soon. Thank you for posting the helpful information regarding the apron and pillows for the mastectomy.
Nottoday, glad to read you are starting to feel better after your third infusion.
Regarding the comments/questions about nails: My nails are very strong, the cuticles have totally disappeared and the half moon is visible on only the thumbs. I am icing during the Taxotere infusions. Not everyone gets peripheral neuropathy from Taxotere, but one friend still suffers with it eight years after her infusions so I prefer to ice. Plus, it may or may not protect the nails.
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Thank you everyone for the welcome
If anyone has any questions let me know and I can share more if my chemo and mastectomy story. I surely hope round 4 goes better in a couple weeks. I'm still waiting to feel better after round 3 myself. Everything has my anxiety so high. My oncotype score was high and even though I had clear margins and no lymph node involvement, every pain has me freaking out that cancer is spreading because it's aggressive... I haven't quite figured out how to ease the anxiety at times and I can't stop thinking about the future. I am taking cbd oil and highly recommend for those of you that need a little something. Nottoday: I wish I had a list of must haves... Pillows are great. It took me 5-7 weeks post mastectomy to start feeling better. My drains didn't bother me too much since I had clips on them. I basically walked around in the surgical bra the entire time. I had lots of help with the kids so I didn't have to worry about them tugging on my drains. Surgery in the summer helped which is why I didn't really wear a shirt. If you live in a cooler place, get shirts that button or zip. Have someone willing to help you shower. I couldn't shower by myself for weeks especially with the hair washing.
I see a lot of questions about nails. Mine have been fine so far. I've been wearing gel polish on my fingers and regular polish on my toes. Darker colors are rumored to help. I haven't had any neuropathy sensations until this last round. Definitely ice hands and feet while getting taxotere.
Anyone on here getting neulasta or another form of growth factor? I think that with chemo has thrown some of my labs out of whack and I think it makes bone pain worse.
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I am getting the Udenyca shot, which is another brand of Neulasta. I give it to myself 24 hours after chemo. I take Zyrtec rather than Claritin as there’s good evidence it can ward off the bone pain as well, and it works better for my allergies. My bone pain was worst the first cycle (when I took Claritin, actually) and has been better each cycle since. I had no pain at all during cycle #3. All my labs have been within normal limits, or very close, at each check. Liver enzymes were slightly higher than normal after cycle #2 but my MO said they don’t bat an eye if the markers are less than double the high end of normal (and that even then, they just keep an eye on it). FWIW, I take a magnesium supplement, a multivitamin, Omega-3, and vitamin D (all of which I took before chemo—I’m not taking them specifically for chemo). One nurse mentioned that she thought the magnesium was a good idea.
I read on another board that Neulasta doesn’t seem to work for everyone, and their doctors have prescribed Neupogen, which is a daily pill, I think. I hope everyone is feeling well today
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Round three of chemo is Friday and I am dreading it. I have been significantly more tired on round two than round one, so I'm not looking forward to how tired I will be for round three. I have also been more easily winded and even simple errands can wear me out and make me nap, even on my higher energy days.
On the other hand, most of my other SEs were under control for round two. I got a little worried about the diarrhea a time or two, but enough Imodium eventually got it under control on the bad days. Steroids have controlled my allergic reaction, although I'm taking the last pill tomorrow, so we'll see what happens after that. Hopefully benadryl and cortisone cream will keep it under control. And those are really the only SEs I've dealt with this round, which seemed bad when they were flaring, but in retrospect were manageable and not nearly the worse SEs I could suffer from.
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Today is day 5 of my first cycle with Taxol (after completing 4 cycles with AC). Days 3 and 4 were really tough as I had immense bone pain and general body pain even though I took Claritin - I have been taking Claritin from day 2 as instructed by my nurse but will start taking it the day before my infusion to see if it that's more effective..
Has anyone had swelling (all over the body or in the upper back) on day 3 (the day following the Neulasta injection)? Days 3 to 5 have been problematic from cycle 1 as I get swelling and tenderness in my upper body when I wake up on the day after the Neulasta injection. It takes about 3 to 4 days for the swelling and tenderness to subside. This seems a rare side effect as my Dr and her team were surprised by the swelling. Now that I'm on Taxol, the combination of bone pain, body pain and swelling is a bit much and I'm wondering if anyone else has had swelling and tenderness in reaction to Neulasta and if so, what you have done about it.
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Hi all! I had my 4th and final infusion of AC yesterday. I've been way more tired this round but otherwise feel ok. I anticipate the bone pain returning tomorrow since I had the Neulasta today. But my MO let me know I won't need Neulasta when I start the weekly Taxol so I'm definitely looking forward to that.
Lifo - are you doing dose dense Taxol or weekly? I take Claritin but still have the bone pain. I wonder if it would be worse without the Claritin but don't want to find out. Also it's weird bone pain - jaw, neck, clavicle mainly.
Iamloved - I had talked to my NP about nail bed concerns. She told me to rub coconut oil on my toenails / fingers each evening. I have done it pretty religiously and no issues yet (knock on wood).
Hope everyone is holding up ok!
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kmom-yes I was thinking those two but got confused. So glad your PET came out clean.
Thanks for the recommendations for surgery prep. I'm really dreading surgery. I have this fear hanging over my head that I will get worse news after everything is sent to pathology. They haven't done staging yet and will do it after surgery. Anyone else having these fears?
Anna-do you know what your liver enzymes were? My AST was 69 and my alt was 133. I am taking milk thistle to hopefully help.
I met with an integrative health doctor who discussed supplements and gave me things to help. So far I'm taking probiotic, coq10, milk thistle, vitamin d. Hopefully I can get my liver to calm down.
Anyone else having neuropathy issues? My hand and feet are still tingling. I did ice during treatment but it doesn't seem to help.Britton-that’s exciting your done with your final infusion of AC. What is next for your treatment?
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Nottoday... My staging was worse after surgery in regards to the grade. I went from a grade 2 after my biopsy to a grade 3 after mastectomy which freaks me out. The grading part determines how aggressive it is. My oncotype score was high too... Thankfully the stage stayed the same. I get occasional neuropathy but it goes away. I hope yours goes away too! Sometimes I'll ice extra at home for like 15 minutes here and there for a couple days after.
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NotToday, my liver numbers were in the 40s and 50s, as I recall, so they were slightly elevated but apparently not concerning. It happened after round 2 but not rounds 1 or 3. I've also heard milk thistle recommended for liver health—I hope it helps youand I even more hope you aren't stressed out about it! If it comes back down then I'd assume your body is handling things ok.
Could someone explain oncoscore? Is that something that you only get during surgery but not at biopsy? I'm gonna go google...Maybe not for Her2+ people?
Also has anyone else done a clean shave on their heads? I still haven’t lost all my buzzed fuzz and it looks dumb, but everything says don’t shave it clean.
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Annathebrave — my husband did a clean shave using a Venus aloe razor about a week after we buzzed most of the hair off. My hair has still been somewhat patchily growing since them, but my head is slowly starting to gosmooth in quite a few places. I haven’t noticed any issues with the clean shave, just somewhat stubbly as it tried to grow back in a few places.
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Shar, thank you. I’m on Day 6 now and feel better, though still struggling with the mental part of this.
Nottoday, thanks
Melbo, must be a thing about #3. It was mentally hard. And physically. Glad your SEs aren’t too bad and will be thinking good thoughts for you on Friday.
BrittonKB, congrats on the last AC. That’s awesome.
Annathebrave, don’t know a lot about Oncotype scores except they did an oncotype and a mammaprint off my first biopsy, and another oncotype after my surgery path, specifically on the nodes. I think the resident Oncotype expert is Beesie. You might try asking her.
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Anna: I shaved my head clean, after I cut it short with a guard and lint rollered for a week or so. When no more hair was coming out, and I just had a few stragglers left, I shaved it using one of those Venus razors with coconut oil soap stuff....I was afraid I would have some problems as others have warned in google searches, but I had no problems. I have a few little stubble growing back now.
Anyone else notice how gross our head, neck, and ears get now...or is it just me?! Maybe it’s the lack of hair to absorb or collect the oils, but my neck and especially behind my ears get like earwax buildup that I never had prior to being bald. Of course I make sure to clean these areas when I use my face wash, and you can bet once I have hair again they will get a lot more attention lol.
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Well, I had my second round of Taxol this week after being cancelled last week due to low WBC and RBC. My doc had scheduled me for 3 daily Neupogen shots to follow, but my insurance company jumped right on the chance to nix that as I had 10 too many WBC to come in under their maximum of 1000. So, we'll see what happens this week.
So, what's up with checking liver enzymes? I don't think this is something that has been mentioned to me. Perhaps it's a different chemo? I have finished AC and now am only on Taxol.
Also, is anyone else doing neoadjuvant chemo? It's really maddening.
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I'm now a week out from my round 4 infusion and I'm happy to report that round 4 has been way better than round 3. I know several of you have mentioned that round 3 was tough and I'm right there with you. I hope it gives you a little hope to hear my report that round 4 recovery has gone better. It took me nearly 2 weeks to have a "good" day after round 3. This time, I feel much better and am thinking my "good" days may start as early as tomorrow. Hang in there! We got this!
SusieMommy I'm doing neo-adjuvant chemo too. I'm trying hard to take it one step at a time and just get through chemo. If I think too much about my surgery (currently scheduled for November) I start freaking out a bit because it seems like this will never end!
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Good afternoon everyone. I had my 4th round today. My on cologist has taken the prejeta out of my treatment And she took the herceptin out For this infusion in hopes of stopping the diarrhea.I have a weird excitement about not possibly having diarrhea for 3 weeks. Will keep you posted as to how I do.
Best wishes to all. 2 infusions left now which make me sooo happy! 🤩
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mtspacekace-yes I do feel like the oil on my head is so noticeable!
Iamloved-yay...it’s definitely something to be excited for. Running to the bathroom sucks!
What is neoadjuvant??
I have not done a clean shave. My hubby just the lowest buzz on me. I have the most bald spots towards the top of my hair but the back seems to have kept the most. It’s still growing so my husbands has to keep it short for me. I’m wondering if I will lose it all at some point. I have noticed my eyebrows are thinning so I went ahead and ordered some eyebrow wigs which last 2 months once you put them on. I’m hoping I won’t have to use it but wanted it just in case I wake up with no eyebrows one day
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Just finished 3 rounds of fluids this week after round 4 of chemo and I don’t think it made much difference. Normally I go in for 1 round of fluids...and the dr said we could try 3 this time because I’m not getting enough fluids on my own. Maybe in the end it will make me feel better. Food still does not taste good.
Neoadjuvant is chemo before surgery...right?
My eyebrows got thin, and I haven’t had to pluck any stray hairs like normal...but I haven’t lost them all...I just haven’t had to have them waxed. I do have really bushy brows normally... I haven’t been losing any more hair since my second cycle, but hair growth is really slow. I only need to shave the stubble on my legs about once a week maybe! That’s nice.
I also got my flu shot today! Yay. I’m excited for the weekend and ready for “the good week”. I have lost 10 pounds this cycle so I really need to get some weight back...I’m really going to concentrate on eating a lot of protein and good fats before my next round.
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Melbo, thinking of you today. Good luck!
Jenny, thanks for the encouragement.
Susiemommy, I don’t know if my MO specifically checks liver enzymes. He routinely does a CBC and Chem before every infusion, and the liver enzymes are part of the Chem panel. Yours may do them in your pre-infusion labs but just not mention them because he/she has no concerns about them? My guess.
As for me, had a three month surgery follow up yesterday. Other than stitches still refusing to dissolve four months out and a minor infection under one, doc says I’m good. My range of motion which has worried me on my ALND side, he said is actually better than he would expect at this point. I’m not sure if I’m supposed to feel good about that, as it’s still not good enough for me. Starting PT next week to hopefully resolve some of my post surgery concerns.
Everybody else, hope all is well as can be, and have a great weekend!
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Third infusion went fine this morning. I was looking at my blood work results and my white blood cell and red blood cell counts appear fine, which is probably why I don’t need extra booster shots. (Thank goodness.) My AST is fine but my ALT is a little high, although apparently not high enough to be concerning since no one mentioned it. I have no idea what ALT or AST are for though. *shrug*
Iamloved — you’re off herceptin and perjeta? That would make me nervous since those are both targeting the HER2 part of your triple pos disease. But I am obviously not a doctor and if your doctor thinks it’s better to do that than face more diarrhea — that must be some crazy diarrhea! I am so sorry you’re going through that because mine only gets really bad once or twice during the cycle - the rest of the time it’s just a thing that happens, but it’s not super urgent or uncomfortable. Hopefully I didn’t jinx myself by saying that.
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Melbo...She took me off the prejeta for the rest of my treatments but the Herceptin will probably be added back. She want to give my digestive track a break. Yes it is really bad. The night before my last, my 4th treatment I had 9 episodes of the big D. She asked how many days in the cycle were good days. When I told her 5 days but even on those days I still have diarrhea maybe 1 or 2 times. She said she has have patients like me but it is rare to have such chronic diarrhea like mine. I hope I can go back to the Herceptin for my last 2 round. She did say as of now she can hardly feel the tumor so yea😁! Best of luck to you in round 3. 🎶Your half way there...living on a prayer 🎶
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Iamloved -- that's interesting. I know it's weird to talk about but I also think it's good to share info.
I probably only had 2 days in the last cycle where I didn't have diarrhea, but Imodium could generally get it under control by the 3rd or 4th pill, and most days I only took 2-3 pills. One day it took 5 pills in a few hours and that was a bad day, but the 5th pill put an end to it. I also only have the horrible stomach cramps for a couple of those incidents -- the rest of the time it's gross and no fun, but not painful, uncomfortable, or horribly urgent. I've been drinking a ton of pedialyte water to try to keep my hydration and enzymes somewhat stable despite my body's repeated attempts to purge all the poison with extreme prejudice.
Hopefully my remaining cycles don't continue to get worse, but with the way it's gone so far it's a real possibility. I guess I will just wait and see. But knowing what you have gone through is a good measure for me to have to gauge when I might need to advocate for myself with my MO if it comes to that. As responsive as my MO has been though, I'm sure if it got worse and I was having trouble handling it, my MO would immediately have recommendations for ways to handle it.
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Melbo...I got an Rx for the diarrhea which definitely helped but after a day or so of very little diarrhea my digestive system would explode. The rx couldn't touch it until the 3rd pill out 4 allowed per day. I even took them sooner then prescribed at times. Two oncologists agreed that removal of Prejeta was necessary and my attending one took the Herceptin out this round and I am going to keep track of my episodes. My guess is she will put at least 50% of the Herceptin back for round 5 and if I tolerate it we will go full strength for the last round. As of tonight I have gone in 18 hours which is great for me. The brat diet does very little for me. It does seem to matter what I eat. It all just goes through me. Hence my 25 pound weight loss. But I have extra pounds so no harm there.😉
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Iamloved -- this disease is awful. It absolutely has to be treated or it will kill us, but the treatment is so awful that it also could kill us. I'm sorry you had such a tough time with it that you had to stop some of the medicines -- but it sounds like it was the only call to make and your MO is clearly looking out for you. Still sucks though.
Last night I slept terribly - I'm assuming because of the steroids. I got about 4 hours total, despite taking benadryl for my allergic reaction, and later motrin PM for something that felt like restless leg syndrome. I suppose it doesn't matter that much since I will be sleeping non-stop soon enough.
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To anyone celebrating Rosh Hashanah this weekend, Happy Rosh Hashanah!
To those of you experiencing troubling side effects, I hope that eases soon and your oncology teams are able to help you get relief.
To everyone having chemo, tests, procedures and appointments this week, wishing you the best with minimal discomfort.
AnnaTheBrave, infusion #4 for us on Thursday. The days/weeks between infusions passed too quickly this time!
Wishing everyone a pleasant weekend.
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It's day 5 of my 3rd cycle and I feel surprisingly good. I don't have diarrhea and I haven't had to nap yet during this cycle. Today I even felt good enough to tackle making babka since I wanted a project to work on. We shall see how it turns out. I'm not sure why I feel okay, but I will take it while I can get it. I hope everyone else is continuing to do well with your treatments.
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Melbo, that's great you are feeling well since your third infusion. I hope you enjoyed your babka. Except for excessive sleep and nosebleeds, I felt better after the third infusion than the first two. Hopefully, it continues with the fourth infusion tomorrow. I hope you continue to feel well, too.
Wishing everyone a pleasant Wednesday with minimal side effects.
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Melbo, glad to hear you are doing well this cycle.
I had my first PT session yesterday, trying to get rid of cording and get my ROM back before I start rads. Of all the treatment related things I’ve done so far, it was the most pleasant. I hate people touching my numb areas, feels creepy, but it wasn’t bad really. And I felt hopeful after. Surgeon tells me my ROM is really not bad, better than many at this point, but that’s small comfort when I try to reach for things and feel that pull, and the tightness and heaviness that’s present literally all the time. I keep thinking I’ll get used to it, but I’m not sure I will. I tell myself though if this is the worst that comes from this, I’m doing ok.
Hope everyone else is doing well this week.
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