April 2017 Chemo

JLBinPDX

For anyone going through their first chemo (Whirlwind), it gets better, so much better. I was mildly sick days 1, 2; super sick 3, 4; decent 5, 6; then super sick 7 (weird how our bodies work). I'm into the second week now with yesterday I felt like a normal person. I'm ready, this time, for chemo #2; I didn't prepare as well as I could have, but now I have:

• Sea Bands
• Ginger gum
• Lavender and tea tree oil and a diffuser
• Ginger snaps and lots of crackers
• A neighbor that's my cookie and snack savior
• Brown rice, almond milk, bananas
• Three meds (Compazine, Ativan, and Zofran) that I'll think more seriously about using this time, if needed

Today has been the first day that I've felt that "YES," I can do this. My other life challenge has caused me as much anxiety and worry as has my cancer but that is better and has so greatly helped allieviate some of my burden. I can do this. Bring on chemo #2, I'm frickin' ready, dude!

Can someone direct me to the FB group, please.

JLBinPDX

Can someone direct me to the Facebook group

JLBinPDX

Fanfaraway, it sounds like we can commiserate about port surgery. For me, it was on, then I canceled it, then I set it up again--always a 51-49 thing with the needle moving from side to side. I then had my first chemo less than 48 hours later--too soon, frankly--but I was the one pushing to move this ahead quickly. It's been almost two weeks and I still have bruising. I also did not want the visual and sensation reminder of cancer and it's just so odd and semi-disturbing to have it in my chest. I try to avoid touching it, noticing it, or watching the bruising subside other than to do checks on it once in awhile. The good side is that everyone says how grateful I'll be for it. There hasn't been a single person that's doubted that it's totally worth it. I've 90 percent resigned myself to it. I feel ya.

Annbee

I am so very thankful for all of you. Fanfaraway good luck tomorrow.

I have my second a/c treatment tomorrow morning. I need to remember to bring my ice for the a part of the treatment and varubi tablets. My port still bothers me some just off and on. I have the cream this time. I am hoping it goes well. Ugh!

My hair started falling out on Saturday. Friday night I was sitting and watching a bit of TV and I smelled a smell, just like when you curl or straighten your hair. Almost a burning smell. It was weird. I have not shaved my head.

Thank you for the great list JLBINPDX!

I hope everyone has a good Sunday

DodgersGirl

this weekend I found myself more queasy overall compared to first weekend after 1st cycle of chemo which I wasn't expecting. Definitely find that after the 2nd AC I have to eat something every 3 hours. Soup is my friend today.

Good news is that I am getting more sleep than after 1st AC round

I also found that diet Vernor's (ginger ale) helps settle my tummy.

I don't know if this 2nd round was tougher simply because it's a second round or if having surgery 2 days before chemo messed with my system ???

Looking forward to feeling better each day until AC #3

And I think my tumor is smaller than it was pre-chemo.

Special thanks to everyone who posts here, too, as I can't join the FB group. It means a lot to read everyone posts!!!

utjoy

DodgersGirl...I'm sorry you're having the quezzies! I was lucky 1st go around on that, too...wondering about the next one which is Wednesday. IF my wbc is ok...got the shingles under control I guess...at least they're drying out! That hit me hard! AND...my port is STILL sore! What the heck?

The fb page is quiet today, too...it seems like everyone posts about the same things both places

JLBinPDX

I'm surprised when I hear that anyone has to ask for meds or will be given a prescription at such-and-such a time. For my first AC chemo, the pharmacy at the chemo room gave me four scripts right then--Dexamethasone (Decadron), Compazine, Ativan, and Zofran. I was to take the Dexamethasone for days 2 to 4 and the other three, in order, as needed for nausea and vomiting. I only took the Dexamethsone as given but none of the others so I'll have those if needed as I go through.

I feel so good today. Went on a four-mile, slowish hike through amazingly gorgeous rhododendron gardens. I feel lucky and happy today and can face this in a positive light. Oh yes, there'll be another less-than-cheerful post but today is a really good day.

kdarner

Good evening all!

As was expected my hair stared falling out almost two weeks to the day after my first chemo session. I broke down and had my daughter give me a buzz today. It actually feels better to have it gone, rather than watch it continue to thin out. Went out in pubic today and rocked the scarf thing, lol. Chemo #2 coming up on Tuesday.

DodgersGirl

JLBinPDX- so happy to hear about your "good" day today. It's a great reminder for me that tomorrow will be better than today!

I was only prescribed Zofran and Comasine to take after chemo for 2 days. Then to take as needed after those 2 days. I have steroids in pre chemo IV Ned's but nothing to take by mouth. Interesting

Hope tomorrow is kind to everyone.

Annbee

It is interesting the different medicine we are given. I bring the varubi tablets with me. It is an anti nausea med but I can't take it till my counts are checked. This medicine is delivered to my door. I can't get it at my pharmacy. In the IV I get more nausea meds and steroids and atvian. At home I have the Zofran and steroid. If that doesn't work I can add the atvian.

I am beginning to think I need to buzz my hair. You girls are brave and I need to be.

Anne

DodgersGirl

Anne- I did cut my hair really short a couple of weeks ago but find it tough to face "baldness". Didn't want to take a shower today as I expected all my hair to rinse off with shower head. Istill have hair but did lose a lot in the shower tonight. Sigh

DodgersGirl

utjoy- I was worried that my WBC wouldn't be high enough for round 2 based on blood work I had done a week out but the day of chemo cycle 2, my WBC was great. Hope you have same results.

It's Monday morning and I feel so much better today. Hoping to get a full work week in this week after missing 3 days last week

So far this week, I only have ONE scheduled medical appointment. Makes it seem more like a normal week instead of the insane weeks of testing and follow up appointments

My port is still tender but continues to feel like its healing. Glad it's there when getting chemo

Hope you have kicked the shingles butt and have that chapter behind you.

---

whirlwind

JLBinPDX, thanls for the encouragement and tips! I am a little concerned on why my Onc is holding back on the Zofran. It's like the reason she gave me doesn't make sense. She told me it was because the ALoxi and Emend I had in my IV wouldn't mix with oral zofran if I took at home... something like that. I can't remember exactly what she told me. I have no more nausea but I am so very tired. That I can deal with. Have to get the kiddos off to school this morning, but my husband and kids helped w. weekend chores. I was actually happy to feel good enough to put clothes away yesterday. LOL

~Kelly

PS: here is the link to the facebook group https://www.facebook.com/groups/283579632099000/?ref=bookmarks

JLBinPDX

Dodgers, I feel ya in regard to moving out of the revolving door of the hospital. I had 11 appointments in three weeks. I'm now settling into one chemo appt every two weeks with the following day Neulasta shot/appt. Also, today is week 2 for my port surgery and it feels better than ever. Today is really the first day that I can't even feel it and no tenderness. If you're a few days behind me, perhaps that's something to look forward to.

Whirlwind and others with families, I give you my respect and my thoughts are always with you. My hope is that each of you lets others take over what they can, what they will, and what they're forced to (may have to force teens a bit). Give yourself a pat on the back today for moving yourself through these initial stages of chemo with the famiiy responsibilities that, too, fall to you. My thoughts are always with you women with family responsibilities.

Whirlwind, I didn't have Aloxi in my chemo mix (I did have Emend); perhaps that has something to do with the Zofran thing.

Hair. Seems we're likely all going to go through or already have around the same time. Mine's coming any day. Did y'all know that insurance may cover a wig? I was adamant that I'm not doing a wig. When I read that insurance covers one, I think I may just do one. I plan to make it at least a bit fun with a different color, different style. My daughter said, "you can get one that looks a lot like your own hair." Why would I wanna do that!? Let's have a bit of fun with it. At least summer is coming. I'm thinking bald is best in the summer rather than cold winter, right!? We have to find ways to make this tolerable, perhaps a bit humorous, and doable.

Julie

Annbee

Well my hair has fallen out or I should say that I brushed it out. I had a chin length bob with fine hair and not a lot of it. There is still a little left but I that won't last long. Surprisingly now that it happened I am good with it. Also I had zero side effects from this A/C treatment so far other than fatigue. My stomach has not had any queasiness. I was able to ask my nurse about all the anti nausea meds I take. She said my MO tends to give her patients all she has and that it seems to work. Other doctors she noticed could do more for their patients along those lines. So what my MO gives is Varubi - in pill form this works for five days and focuses on smell triggers. (I think), in my IV she gives me another kind (sounded like alsi?) and I take the Ativan plus a steroid. At home I take a steroid, zofran and atvian( if needed). Ativan has been needed. Plus Claritin for the neulasta. They all seem to be working so far. Fingers crossed. I hope everyone has a good day.

JLBinPDX

Annbee, being fine with your hair loss is admirable and I appreciated reading that. Thank you. Did that happen right after your second AC treatment? I think I may be hairless by the weekend. I, too, think I'll be okay with it once I get over the initial shock. I appreciate your thoughts on it. Best to you and all of us out there.

Annbee

The hair started shedding on Saturday. Sunday I could pull out strands. Monday same thing. This morning I was just coming out with each brush stroke. I am very thing on top now. Head coverings now.

DodgersGirl

my hair is definitely falling out days after AC #2. Figure if I ran my hands over my scalp most would just disappear.

I have not yet lost eyebrows or eyelashes

I think tomorrow when I am "off" work, I will take a long shower and see how much of the remaining hair will wash away

Momojcbc

hi ladies! It looks like the hair loss is hitting a lot of you. Thinking of you all I feel like the more time passes the easier it is. Thinking of you all.

kdarner

Well the doc decided yesterday that maybe we should switch things up a bit to help with the side effects I had with the first round of chemo. She added another anti nausea drug to the line up by IV so now i'm getting Aloxi and Emend by IV before chemo drugs. She also had me pick up Ativan at the drug store to add to the Compazine I was taking last round and stopped the Zofran (due to the bad headaches I was having). Hope all this alleviates the vomiting this go around, I feel confident. She also decided to take me off the Cyto xan and switched that to Carboplatin. I can't remember if it was due to the headaches, mouth and throat issues or what now but i will put my confidence in her and hope this round goes better than the last. I had a tiny bit of nausea last night but feel fine this morning. Last round it didn't really hit me hard until day 2 and 3. So I'll get as much done today as I need to just in case. I have a dental appointment this afternoon but the procedure should be pretty quick, getting my new bridge placed. Then pick up car from the shop so not a lot to do. Hope everyone has a good day.

And ladies that hair loss thing is a bit of a shock right at first but then is quite liberating. Just do what feels comfortable with you, I am doing the scarf thing and liking it. I let the longer ones hang to the side sometimes and it almost feels like a long ponytail or braid there. Yesterday my three year old granddaughter said i looked like Elsa ( so she is an ice queen, a beautiful one, so i took it as a compliment). I do have a wig for when I feel like i'll need to present myself with hair but I haven't gotten comfortable with that quite yet. My daughter gets married in October so might have to wear one then.

Hope everyone has a great day. Thanks for being here, the support is incredible.

Fanfaraway

Hi all,

I tried to post after chemo, but my message didn't work - I was pretty out of it.

Lots of strength for all of you losing hair, I am sure that we'll get used to it!

I had another set of poor experiences, with the port not working (so they have to remove and give me another one on the 9th), and my second session getting pushed to the 10th.

I had a lot of nausea on the first night and next morning, but probably also had to do with the fact that they gave me emend way too early (my chemo was due to start at midday and in the end it started at 8pm). Crazy experience where I was falling asleep as they gave it to me...

I am now feeling much better, with the nausea under control. I eat crackers and take my meds religiously and have finally been released from the hospital today after one week being kidnapped there 😂😂

All the strength to you all! It helps so much to read your experiences and good wishes. Sending you all my love

JLBinPDX

Kdamer, sounds like your regimen is now more like mine. I had chemo #2 today and I get Emend prior to chemo (not Aloxi though). I have Compazine, Ativan, and Zofran but didn't take any. After talking with my Oncologist this morning, he stressed taking Ativan if needed as long as I can handle the drowsiness (and the other two as additional options that he doesn't think I'll need). He also stressed Prilosec for indigestion/heartburn that was pretty bad the first time around. He knows I don't take meds since I'm afraid of the additional side effects so he quickly mentioned that he wasn't aware of side effects with Prilosec--so use it, he told me.

Farfaraway, this is more than you should have to endure and you're in my thoughts. There are a lot of good ideas, suggestions, food topics, and thoughts here for controlling your side effects. I'd encourage you to read back through the posts and pick up what might work for you. I wasn't as prepared for chemo 1 as I could have been but have now regrouped and am ready for this round. Be strong! You can do this!

JoyAl

Hello everyone, I'm one week past AC #2. This time last week my hair was just starting to come out and now I have about 120 hairs left on my head - it happens fast. I had my labs done yesterday and the NP was a little concerned with how low my WBC was but the doctor seemed fine with it (maybe because it recovered so well before AC #2). He's also fine with my going to the office all the time. I'm washing my hands, staying away from folks, using hand sanitizer but I'm starting to feel like I'm risking it by being around everyone all the time.

I feel like everyone is spoiling me - I've gotten so many gifts and offers of help including having 3 people cook dinner. So incredibly sweet, I'm going to have to think of a way to say thank you to them all when this is over. I'm considering covering the cost for catering lunch or breakfast at the office... but we'll have to see how broke I am after treatment, I'm choosing to take any time off work as unpaid.

Hope you are all doing well!

JoyAl

Does anyone feel like they're getting chemo brain? Just this week I've had a few instances where I could not remember a simple word. I had this happen before with migraine medication. It is so irritating!

BSchutt

Julie, my insurance covers one wig, too, which elected to not get. But you have the right attitude in changing up the style. Try something totally different and have fun! I'm thinking of having my daughter put a henna (nonpermanent) tattoo on my baldness

Annbee, that is terrific you had no SE! I was never given a steriod either during infusion or after, hmmm.

Fanfaraway, I'm so sorry you have to go through another port surgery! I wonder exactly what happened, if it just got clogged or if it dislodged somehow. Yes, eat lots of crackers to help with tummy issues. So glad you got to go home from the hospital.

Joy, yes, I've got chemo brain big time. Maybe had some before I started chemo, lol. But it can be frustrating but you have to not be too hard on yourself. Hubby, is patient with me. I used to love having a command of the English language and using descriptive words but that has fallen by the wayside. I read something and want to discuss it later with hubby and I can't remember what it was. I jokingly told him I need to have a notepad clipped to me so I can write things down.

Has anyone had issues with a sore throat? Mine has gotten progressively worse. It didn't bother so much in the beginning because it would come and go but it is staying around now and I wake in the night not able to swallow. I suppose this too will pass but I'm going to ask for suggestions today when I go for my treatment.

Hope you all have a kind and blessed day.

Barbara

DazzlingEagle

Bshutt: I wonder if your sore throat is because of a dry mouth? That is miserable waking in the middle of the night. I had three nights in a row where I was waking up every 15 minutes because I couldn't swallow and I had to wake up and drink water until I couldn't stand the taste of water anymore or anything else except some kool-aid. My throat and mouth are finally feeling almost normal after more than two weeks. I swear I thought my teeth were going to fall out but they are all fine.

Anyway, I started using Xylimelts for dry mouth. They are like little discs that stick to your gum and last half the night. Also biotene oral balance mouth moisturizing gel, which is supposed to help sooth and protect. I found them at Rite-aid by the mouth wash section, kind of by the biotene mouth wash, which I also use. If you can't find them at a drug store, your dentist might be able to get you some samples. That's how I found about them, from my sister's dentist.

DazzlingEagle

I had my second chemo yesterday Wed 4-26-17. It went well. I took over the counter pepcid the day before and the day of the chemo and was able to avoid getting the stomach gas bubble feeling, which the chemo nurse said was indigestion. My sugar levels were 273 and they had to get the doctor's okay to proceed with the chemo. I guess that level is really high but they said it was probably from the steriods. Plus all I want to eat are things like cereal and toast and donuts. I really don't have a normal appetite.

I had a first consult appointment with a breast surgeon and it was pretty upsetting. There is still too much edema in my breast and I developed orange peel skin. I think she thought she might try to do a skin saving surgery but after she saw my breast, she really wasn't able to even go over any surgery options yet but wants me to come back in about six weeks and re-evaluate. And she gave me a copy of a report that I'd managed to avoid that said one of my diagnoses is metastatic breast cancer, which that diagnosis is never on anything from the medical oncologist. So I'm really confused about that and I almost wish I hadn't seen it. I assumed I was a grade 3 but I haven't had surgery yet so that's just a guess. I will get up the courage to ask the medical oncologist on my next follow-up appointment with him. Maybe it's because there was tumors below my clavicle, which I knew about but I thought the chemo would kill it. I don't even feel them anymore and it doesn't seem like there's any swelling in that area anymore either.

I understand about those writing about the never-ending appointments. I appreciate it finally slowing down for me but there are still a lot!

Got my hair cut very short and I actually like it but it's falling out rapidly now. I am going to the American Cancer Society to look at their free wigs. I don't know if I'll wear it yet. I think I will have short hair for a while actually because it is great. Of course, when it grows back brown or grey, whatever it decides to do, I will dye it a lighter color as soon as I'm allowed!

Thinking of you all.

BSchutt

Dazzling, thank you for the suggestions, I'll have to look for those options. The doctor on call today ended up giving me something that the pharmacist mixes up for mouth sores (don't really have those) and sore throat. We'll see how that works. The report you saw must have been scary after not having that diagnosis from the oncologist....that is kind of strange, actually, that the onc doctor didn't have that. That is great though that your tumors under the clavicle are shrinking. Keep positive!

I had to miss my treatment today because my WBC were too low. I actually begged to get the treatment because I just want to continue and get this done! But, nope, they wouldn't have it so I'm pushed off for a week.

ParakeetsRule

My lymph node biopsy report said "metastatic invasive ductal carcinoma" and scared the crap out of me because I accidentally saw it before they could talk to me about the results, but my oncologist said it was because the lymph node has adipose tissue inside of it and the cancer is in that in addition to the lymph node tissue itself. But it's not outside the lymph node, so it wasn't as scary as the report sounded, and she hasn't called it metastatic cancer either. Hopefully yours is something like that! I spent a whole day freaking out...

DodgersGirl

BSchutt-DaxzlingEagle: I do notice a sore throat a couple of days after chemo. And I notice it is harder to swallow without water. I don't like that feeling and assume it was something to do with salivary glands not waking up after chemo. Someone posted to bite into lime slices to help wake up those glands but I haven't tried it yet. Seems to pass after a couple if days.

I am noticing my nose running more frequently. Anyone else? I remember a tip on this board about nose drips cause you lose noise hairs, too. I keep a Kleenex box near by.

BSchutt- do you eat ice chips during chemo? My chemo nurses bring them to me during one of my chemistry to help prevent mouth sores. I know you are ahead of me on chemo, getting T now while I am still on AC so maybe icing isn't used for the T cycle??? Also sorry to hear your WBC was too low for chemo. May I ask what your count was?