Starting chemo July 2018

Hello Coloradoholly, I got my first chemo session in yesterday. Feeling pretty good today so far, but I am up at 6:00am. The steroids seem to give me headaches. But other than that I am feeling okay. Glad to have at least the first session in, next one is the 24th of Aug, and then the 14th of Sept. I was hoping that they get a little better as they go, but chemo nurse informed me yesterday that that is usually not the case. :(. I start me shots today of zarxio. what do they have you on? I was able to go direct to the manufacture and get a $10,000 dollar manufacture card to cover the cost. Orig. this was going to cost me $1427 dollars every three weeks out of pocket. I ate before chemo yesterday, during chemo yesterday, and ate well last night. Has not seemed to affect my eating yet. Leave it to me, I put on 6 pounds before I start this, thinking I need to bulk up a little, now can't get in my shorts. LOL

Take care everyone, you are all in my prayers and thought.

everybody here with ports, aren't you? guess that's one more thing that is really different in Europe - we don't get ports.

ColoradoHolly - yay for your upswing, you are into some normal days now

JKittle - great, so you only have 1 AC left! Your operation is after chemo?

Hughope - I get Accofil injections, which is the EU version of Zarxio, I guess. Covered by insurance.

I'm feeling weeker this cycle... I got my period on Wednesday, 2 days after chemo, ugh, I guess that has really helped to make me even weaker. The period was strong the first day but is almost gone now, the fourth day. I guess it was my last period in my life.... I already got a Zoladex shot to shut down the ovaries. So this was a surprise.

Otherwise we are trying to enjoy the summer with the kids, but they are a bit bored.. I must stay away from the sun as well as crowds... so we have put a small pool in the garden for the kids to splash in...

Hey does anyone know how to reset me age, I was born in 1958. LOL Not 2004. I am on this site as a 14 year old. Thought it would give you all a laugh. I had my first round of Chemo yesterday, so far so good. Have not been sick from either end yet. Knock on wood! Just did my last set of steroids, and first Zarxio shot. The only issues so far are those steroids, give me bad headaches. I did put on about 6 pounds before I started this ordeal. Was getting kind of worried about the side effects of weight lose. It may be different for the ones that have had surgery and then chemo. Because you were probably healthier then than after starting chemo. I hope the best for all of you, and hope someday we will be blazing the trails for others coming up behind us. Take care my friends in battle, hopefully we will all be looking back on this someday. xoxoxo

As a nurse I know lots of things, I just know nothing about oncology. Nothing.I had my first AC last Monday (7/30) Then every other week x 4 then onto Taxol every other week x 4. Then radiation. Luckily, I was only totally down Wednesday and Thursday. Crazy fatigue and body aches. I was throwing up in the kitchen sick and threw myself into a laryngospasm. (Not cute) Took my Zofran, Claritin, and Tylenol but I was hating it.

Two days later, I'm eating like an unhinged madman. I had my daughter cut my hair to my shoulders. Ready for round 2!

Breaks my heart how young we are. I was 41 at diagnosis, now 42. (I'm petitioning for a better birthday next year.)

Sending you all positive vibes

MoonGirlJess, welcome! I also am feeling hungry all the time after my first AC (and after I got through the terrible nausea the first week). I have definitely been eating more on day 7-10, mostly I crave carbs (bread, potatoes) and chicken lol. I tried to eat a healthy veggie lunch the other day and it completely backfired and I spent most of the night in the bathroom ☹️. So carbs it is!

Hi all, started TC chemo on July 17, and so grateful to have just found this group. My second round of four starts tomorrow. I got through round one ok, with days 5-7 being the least pleasant.

I am doing the Paxman cold cap and wondered if anyone else in this group is using that system. I've started losing a decent amount of hair, but mostly in the back and just above my ears. Not sure how much I will keep, but the shedding over this last week has been pretty intense. I'm just taking a wait and see attitude regarding cutting it, but there's plenty left that if I wear a cap it's not noticeable. Maybe hair is a trivial thing to be concerned about during this serious time, but perhaps because it is the most visible side effect it's kind of hitting me harder than I thought.

Looking forward to reading more about you all and hoping to be of support if I can be.

Best wishes to everyone!

Hi BCSilverlining,

Thanks for your note! I will definitely keep on with it.

For me, the first thing I noticed was a dry-ish mouth. I kept up with salt and baking soda rinses about 6 times per day the first 10 days after infusions, used biotene toothpaste, and biotene rinse - these helped. I regretfully ate toast a few days in a row right after chemo and though it didn't bother me at the time, I found my mouth to be very abraded for a few days after. Watch out for rough textured foods or foods that are too hot in temperature. This only lasted maybe a week or so post infusion.

The only major side effects I had were a few days of constipation coupled with intense bone pain due to the Neulasta injection. Though I used claritin, maybe I didn't have it on board soon enough (started the same day as the injection). Now I've been taking it everyday and will do so until finishing chemo in Sept. Getting out for walks everyday was key, and did help with the bone pain. I'd say the worst days were days 5 and 6, then the next day I almost felt normal. I was able to exercise a little each day and do more as time passed.

Wishing you a very smooth treatment and gentle effects on Thursday and in the days following.

Take care and please keep me posted on how you do with the cold cap!

Hi Teenstar and BCSilverLining,

I'm also using the Paxman system and have done 2 rounds of TCHP so far (of 6 total). I haven't noticed much difference in my hair yet other than a minor increase in shedding around the ear/"sideburn" area and a little more than usual in the comb when I comb my hair. The cap doesn't cover the hair in front of my ears so I expect that to go eventually. Teenstar I think your shedding is totally normal... my local Paxman rep told me I could expect to see shedding around when you said you saw it.... I just haven't seen it yet. I'd definitely stick with it! From what I've read, some women experience heavy shedding but it's dispersed enough to maintain a more or less normal look, although their hair is thinner.

BCSilverLining best of luck on Thursday! We'll be sending you positive vibes.

Let's keep each other posted on how our cold capping goes!

Positive vibes and hugs to everyone.

Teenstar and ColoradoHolly!

Yes! Lets keep eachother in the loop on the cold caps! I also bought sulfate free shampoo/conditioner for when I do wash my hair and started taking some hair and nail vitamins. I am hoping these things help I dont plan on brushing my hair much either and no heat like my beloved straightener 😢

Thank you for all the great advice! Ill take it wherever I can get it. My cap is delivered tomorrow morning

Good luck on future treatments....sending the brightest light possible💕

-Meara

Nicole1966 sorry to hear about your mouth. Have you tried a salt and baking soda rinse? 1/4 tsp. Baking soda and 1/8 tsp salt - tepid water swish around your mouth then rinse with cool water. I do them after every meal. Stick with the softest food possible for a few days, like eggs, or even fresh raviolis and soups. I try to avoid anything with too much texture or too much heat during the few days post infusion. Biotene also makes a spray. Def contact your MO to update on this SE.

Hope this resolves quickly

I've done it all with baseball caps. I have some scarves but I feel like that just draws more attention to my head.

I had a sore throat, my MO even took a sample for lab (which was negative). I rinse with Tantum Verde and suck some salvia pastilles. It helps a bit.

Mischa, yes, exact same experience - people stare before they realize what they are doing and then they quickly look away which makes it worse. We went for a cool forest walk, me with a scarf, on a nice trail, usually there is nobody there... but it was Sunday, so we were surprised to meet a few people and even a similar family - their kid wanted to make friends with our kids, but the parents were staring and then they stayed away. They were definitelly talking about me... Today we went to a ZOO, it's very hot here, but I wore my wig and was happy to be completely lost in the anonymity of a "normal" person.

I am very, very shy of my bald head. Nobody has seen it 😱 not even DH. I'm ashamed of it, in fact...

Hello everyone,

I posted this in another thread and am reposting it here. More than anything I just felt the need to vent a little as I'm having a hard time with my TCHP regimen.

I have completed 2/6 cycles of neoadjuvant TCHP and am already wanting to quit. The side effects (nausea, fatigue, diarrhea, lack of appetite/taste issues, weight loss, and just generally feeling like crap) linger for me for up to 10 days after a treatment. I hate being confined to the bed or couch all day. I'm normally very athletic and this regimen has basically shut me down. I've just started experiencing neuropathy in my fingertips. I'm seriously depressed and cannot imagine doing this four more times!!!

I've noticed major shrinkage of my tumor but it isn't completely gone. I really just want to have surgery and get this over with, I want the cancer removed from my body! I'm seriously conflicted and don't know what to do. Some days I just resign myself to the fact that my cancer is going to come back regardless (I'm young, HER2+, and already have it in my lymph nodes), so why bother completing this regimen and suffering the quality of life issues.

I'm just not sure what to do! Is anyone else having second thoughts?

Thanks for listening,

Holly