July 2020 chemo club

I forgot to mention, I have noticed my nails are more brittle...I get a gel manicure before each chemo cycle and have not noticed anything really different, except for them being more brittle. I am not icing either.

hello everyone! It's been about a week after my 3rd cycle and I'm starting to feel better. Usually after a week my face rash breaks out which it's starting today. I am looking forward to the 3rd week before my 4th infusion since that's when I feel my most normal. Question-is anyone having issues with their elevated liver enzymes?

Kmom-can you explain the elevated ALP? I know mine are elevated but nobody has said anything. Or is that the liver enzymes? I know my liver is irritated.

Ampmusic-welcome I have 2 littles (6 and 4) and I can't tell you how hard things have been. Virtual learning, working, chemo 😩 I'm exhausted! I keep telling myself when this is all over I'm taking a vacation

For those that already had a mastectomy...what were your must haves to get your through recovery?

My cuticles have totally disappeared but my nails and fingers don't hurt. I also have Mees lines now, which are pale white lines on the nail caused by the toxicity of the chemo. I am not icing. My nails are still growing but quite slowly.

Thank you for the CBD tip! I’d like to give it a try.

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.

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.

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

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.

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?

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.

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.

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.

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.

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.

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.