Starting Chemo March 2015

PrincessOfMeh

Back from my first AC and was very anticlimactic. Handled everything well, no problems. I have a slight tingling in my feet so far, but nothing worth getting unhinged about, at least not yet. I felt so good afterwards that hubby and I went for my walk (he's hovering a bit, perfectly understandable). Such a pretty day! Told hubby, since nature is on the cusp of waking back up and I'll be able to see it all during my walks, I picked a great time of year to get BC. At least he enjoys my perverse sense of humor.

I'd picked up lysine and funnily enough, my MO said no to it. Oh well. We might revisit that later.

The fam is celebrating Mommy's first round with pizza! Don't know how well that's going to go with me. I rather think cottage cheese with all that lovely protein might be the better alternative, but I got yelled at today. Somehow, I managed to lose 8lbs in a week. Oops. I thought my metabolism had slowed down in my 30s and my time of sharp dips like that were over. Obviously not. Plus, I've been obsessing so much about what I should and shouldn't eat...MO said whatever it is, JUST EAT IT. LOL

Trvler

Oh, I am sorry about the lysine. I would love to know why he said no. I have seen some people say they had it recommended. I don't want to recommend something that is bad for you.

rleepac

Keep in mind that even though the scan might be clear and it's most likely NOT a cancer met causing any new pain...there are many conditions that are totally unrelated to cancer that will pop up and you should continue to see your primary care doc as needed.

Not every ache, pain, rash, or itch you feel will be related to your cancer. I know it's hard to imagine that it could be anything else but your body didn't get the memo that it's only allowed to have cancer-related problems right now

BBwithBC45

I bought a dress today online, too! Not from my chemo chair though.

Not sure how it's going to fit with my port sticking out, and with my boob MIA, but I'll have to try it on.

Jackbirdie

I hate to be the bearer of bad news but I have read studies indicating that 10-15% of BC can bypass lymph node system and get into remote areas via blood/lymphatic system. That means you can have no mode involvement, clear margins, and still have a problem. I worried about this LOTS until I got the baseline scans done. It is imperative you use every tool to help yourself do what you can do, then stop worrying and enjoy your life. You might look some of this up and use it to advocate for yourself with MO. Please understand I am not trying to scare anyone but in my book those are big enough numbers that it's worth pursuing for your peace of mind

a word of caution, not all insurance companies will pay for both. But you need both because they show different things in the same area of the body. I was lucky, mine paid. They are expensive. The copays aren't cheap. My hospital helped me work something out for the copays. They said that I didn't need to be worried about money at a time like this. Nice.

I love the retail therapy ladies! Well done!

We need shoes too!

I had my dermatologist after the blood draw because I and whole family have SC. He worries with chemo immune is suppressed and other cancers see their opening and make a run for it. He found I've got bad acne on my back. Gag me. It was so bad he took cultures and asked me to run it up to the hospital lab immediately! Gross. It was itching, but I can't see it. I wonder if I could train Jack the wonder dog......

PrincessOfMeh

I'm stage 3 so I figure pet/ct's are gonna be my best friends for quite some time, LOL.

As for shoes...Last summer, I made smut shoos. See, I'm a romance author (hence the "smut" - LOL) and I got this crazy idea from Pinterest (truly, the source of every evil) about modge-podging lines of one of my books onto a pair of canvas shoes, which I did with a relative (who is also an author) last summer. The plan was for me to wear my "smut shoos" to a writers conference this summer. Now, of course, the convention is out of the question so alright then! I wore my fabulous smut shoos to the chemo clinic. Got a real kick out of it too.

Jackbirdie

love your smut shoes PrincessMeh! So creative. And glad you got some modeling in at the chemo clinic. Who knows, you may find you advertise and sella few books this way!

avmom

Hi, all. Just got back from lab tests to sseee if AC#2 can proceed on Monday. Although my counts are down (as expected), they are good enough, so #2 is a go! However, I have lost about a pound a day since the first AC infusion. I'm not thin, so it isn't a terrible thing to lose some weight, but I have to figure out a way to at least slow it down. Princess of Meh, try to eat what you can. I got some nutritional questions at my lab visit from the nurse, with a suggestion to maybe try to add some smoothies to my daily routine. I've been making a point to eat protein foods, including greek yogurt and cottage cheese, and that's a lot of dairy for me. I haven't wanted anything highly seasoned or spicy, and the only meat that's been palatable has been chicken

Jackbirdie

Smoothies are very helpful to me when I know I should and get some protein in but don't feel like it.

Use whey protein powder, not soy, if you are ER+. Grocery stores have it in the otc pharmacy section

It comes in choc and vanilla. I put in frozen fruit and a little ground flaxseed. Non nom nom.

LisaZak

I had my echo and "chemo 101" class yesterday with the NP. Very excited to learn that my treatment will be a very comprehensive team effort. On my first day I will meet with a Registered Dietician and a PNI counselor. The PNI counselor is free for me and my family. Then I will be set up with a Naturopath and have a whole mind -body treatment tailored for just me. Never knew it would be this supportive. There is even an exercise program called Fitness for Life that I can join if I want. All of these services are included in the treatment plan. Does anyone else have that offered? I feeling ery lucky today that I will be having such great care. My nerves have been shot for the last 3 months and it feels good to have a plan and feel supported.

Supernannymom

Hi Shaz and the March group!

I will be starting 4 rounds of AC at the end of the month, and then 4 rounds of Taxol. Did they give you a "dose dense" option? I was told I could go every 2 weeks instead of every 3, but then I would need to have a shot of neupogen the next day. The benefit would be a month less (8 weeks instead of 12). Anyone out there have any advice/experience with this?

I am getting my hair cut this weekend as well! I have super long hair, and I am getting it cut to my shoulders...and once I start treatment, I am going to have my head buzzed as I was told by my MC that I would loose my hair in the first two week with AC (any confirmations?)!!!

They are waiting until the end of March to start my chemo because I still have an open wound from a skin graft from my reconstruction. I was told I can start on any day of the week - this may be more relecvant to me when I have more experince...any thougths or suggestions?

Jackbirdie

LisaZak- wonderful, wonderful news. Both about the care and the fact that you feel cared for. And can relax a teeny bit knowing that this marvelous TEAM has got your back. Big hug. Katy

Jackbirdie

Welcome Supernannymom! Sorry we meet this way. I have heard days 14-17 are about when you lose your hair. I shaved mine so it couldn't get me first, and it's been fine.

As far as dose dense, I was given the option of 4 treatments, 3 weeks apart or 6, 3 weeks apart. Neulasta not optional. I took Claritin for Neulasta SE prophylactically and had no issue. I chose, on my MO's strong urging, to do the 6 treatments. In for a penny, in for a pound.

I looked ahead several months ahead on my calendar to make sure the day of the week I chose would not have to be interfered with for any reason. They like to stick to the schedule, and for me it's just easier to not schedule anything on Thursdays at all for awhile. If you work, you might want to back into your day so that the dreaded (for some people) days 3 and 4, fall on the weekend. Unfortunately, though, even in this small group, we have seen people 1) sicker the day before due to horrible nerves and fear; 2) sick in the chair immediately due to a reaction; 3) sick day 2; 4) sick every day; 5) not too sick at all and exercising prolifically; 6) sick and in the hospital or back at infusion center getting fluids and electrolytes; 7) did I mention constipation?

All kidding aside, it seems best, without overdoing it and expecting it, be aware of what might happen and have the meds or tricks of the trade on hand at the ready. Have back up plans. Have back up plans for the back up plans. It helps to be prepared, and once you've done all you can do and can't do anymore, be at peace, for the rest is someone else'sresponsibility.

Trvler

I saw two MO's and one said Taxol every two weeks and one said every week was easier on patients.

If anyone likes cashews, they have a lot of calories and protein.

PrincessOfMeh

LisaZak, the support sounds WONDERFUL, happy for you! Here...I honestly don't know. They moved mountains here to get me through all the preliminaries and into chemo as quickly as possible so I'm still rather fuzzy on what else is available for me here. I've got a local support group t attend next week and intend to ask then.

Supernannymom (and Lisa!), welcome to the group! I'm on dose dense -- 4 rounds, 2 weeks apart, plus the shot. Then, 12 weeks of (weekly) Taxol. My MO said I'm young (at 44? God bless that woman, LOL), otherwise healthy/strong, and said she believed I'd handle 2 week turn-arounds well. We shall see. But I'm hopeful.

Italychick

day 4 was my worst because day 2 and 3 I was still taking the steroids. I feel like a fraud because the only side effects I got from treatment 1 were stomach felt bloated even though I never got constipated, mouth tasted terrible for 5 days, and I had some toe tingling, which I've been treating with B6, and lots of potassium and magnesium. I am doing wednesday infusions so I can work normally Thursday and Friday and have the weekend to recover. But I also have the option of working from home as much as possible.

Having said all that, I am not being naive that chemo 2-6 will be any cakewalk because supposedly the effects are cumulative. Initially I was going to cut my hair, but I finally decided to have my wig ready and wait until the last minute. I have a tendency to prepare for stuff too far in advance (like packing a week before a vacation), so I am trying to go slow and take things as they come.

When you say your counts were down, what does that mean? With the Neulasta shot my white blood cell count measured four times normal, which is right where they said it should be, red blood cell counts were normal. My white blood cell count is 23.90 (range is 4.60-10.20), and my Neu# is 18.50 (range is 2.00-6.90). My HGB is 13.10 (range is 12.20-18.10) and platelets are 254 (range is 142.00-424.00). So when you say counts are down, I am just wondering what they are. I panicked because mine are so high, but oncologist said that number is perfect.

My food choices may seem gross, but if I can't eat anything else for some reason beans and sour cream go down quite nicely. But I have been eating 100% normal food so far, knock on wood. Doctor said eat, exercise, do everything as normal as possible, no restrictions

LisaZak

Princess, I am considered "young" too! (At 47) After my haircut (I went really short) my husband and all the girls at work told me it took 10 years off my face. They said I look "sophisticated". Wow...too bad I only get to enjoy this for another few weeks. My DH said he feels like he is cheating on me. I really lucked out with finding this hair dresser...I went to her initially because she was a location of the Cancer society wig bank. As she was chopping my hair off, she told me that she was going to make sure I got a cut that would make me feel amazing. She will do the final buzz for free. One thing about this whole experience for me is that I have met so many people who try their best to make a really crappy situation tolerable.

Jackbirdie

I agree LisaZak- I have met so many supportive people who really have tried to do whatever in their power, in that particular situation, would make me feel amazing. It's a little odd, because it's often more than I get from some friends and family. I have to remind myseld that the new people, strangers, etc., don't have the baggage, fear, etc, that F & F have.

Italychick, here are my before and afters:

wbc 6.5 to 4.7 (Still just below normal but nearly 40% decrease)

rbc unremarkable, 4.7 to 4.2

Platelets 336 to 176

NE# (baby whites) 4.0 to 1.6 this is the one the reacted to most, saying damn good thing I'm taking the Neulasta

HGB hardly changed, 13.4 to 12.6

The really great news is liver function improved (I have been working so hard on this!)

AST still high, but better. Sigh. Of. Relief

Meme117

LisaZak your facility sounds heavenly! I wish I was in your area.

Princess I'd love to see a photo of your smut shoes - I love love Pinterest.

After hours at hospital for pre-testing for port on Tuesday I was finally able to do some research on recommended treatment by new MO. Since it wasn't the same as the other MO or BS I wanted to know more. Thank god for the internet! According to the national comprehensive cancer network, the treatment my BS recommends is the preferred regime for me unless I misread the guidelines. I'm calling my new MO tomorrow with some questions. I'm mentally exhausted from changing MO and now this. But I have to advocate for myself right? It would be the difference of 2 added drugs, an added cycle and chemo after my lumpectomy instead of just before.

Italychick

Jackbirdie, great on the liver enzymes. Look at a substance called NAC (n-acetyl cysteine). They give it in hospitals to people with drug overdoses I think. I'm not recommending, but research it for the liver. I take it, and my alt and ast were high at one point, now they are both 15.

Every time I leave the doctor, I think of a bunch of questions I wish I would have asked. Sigh.

Superstitiously, I quit all supplements for five days around chemo. I don't want anything interfering because I never want to do this process again if I don't have to.

avmom

Thanks Jackbirdie for the smoothietips. i'm triple negative, so soy/no soy won't matter for me. Maybe I'll try a couple and see what wants to go down. My counts are down some too, so the Neulasta is needed. LisaZak, your commprehensive care plan sounds great. I think I hae access to most of the services you mention, but I have to do a lot of the initial contacts and coordinating getting things started. I'm in Canada, and our health care syste includes pretty comprehensive options, though someetimes in limited locations. I live in a ruura area, so for me choosing the best location isn't always obvious.

Supernannymom, my treatment plan is four rounds of AC, on a two week, dose dense cycle, followed by four rounds of paclitaxel (Taxol), also every two weeks, dose dense. This is to give me the best reductionn in recurrence risk, and is "standard of care" for young (! i'm 54) patients with my stage of triple negative disease, povided you can tolerate it. I'm scheduled for AC #2 on Monday.

Italychick, you are a beacon. I'm managing to maintain a walking regimen, with some recumbent bike inside, but you are doing so well! I met with the team at the satellite infusion centre today, and we have a plan to try to prevent the SE probems I had with the first round. Here's hoping!

Supernannymom

Thank you Jackiebirdie! The offered me 4 rounds of AC either 2 weeks apart for dose dense, or 3 weeks apart for standard. May I ask what the claritin does? I have read people having claritin or benedryl, are they to manage side effects? They also offered the taxol, 4 doses 2 weeks apart or every week for 12 weeks. So basically I can have chemo for 4 months or 6...of course I would choose the 4 but they are calling the shorter time dose-dense and it sounds a bit scary as chemo is already pretty nasty.

I am cutting my long hair this weekend, and when I start infusion in a couple of weeks I am pretty sure I am going to have my head shaved- the idea of hair just falling out in chunks is a bit stressful...but who knows -I may change my mine!

Thank you for the warm welcome! I have been reading, but haven't yet posted as this is all so new and foreign to me! As one of my friends said "Welcome to the club you never wanted to be in!"

Jackbirdie

thanks for the liver tip, Italychick- I stopped a whole lot of meds over the last months. I'm at a bare minimum now, and lately, they've been one at a time reductions, so I can more directly see cause and effect. Allopurinol for gout tripled them in one month! Stopped that nonsense. Started taking fresh lemon water in the morning on empty stomach and they halved. And my uric acid got back in line. Just from lemon juice.About 3 weeks ago stopped gabapentin and they came down some more.

I finally understand that every single thing I put in or on my body (sunscreen even?) can affect the liver. Of course most people's livers handle all in stride, but for some reason mine does not.

Jackbirdie

Supernannymom - I have no clue why it works, but the Claritan is to address what can sometimes be moderate to severe bone pain from the Neulasta. The bone pain comes because the Neulasta is working in bone marrow to stimulate production of new "baby white cells" as I call them.

It's a side effect of a side effect hahaha. I took it days 2-6 proactively and had no bone pain. And no headaches or constipation from it (that would have been SE thrice removed!)

Supernannymom

Princess...I am 44 as well! LOL...and I was also told I was young and strong!! LOL....yeah until you give me Chemo!!!

I was offered AC 2 weeks apart for 4 treatments, or 3 weeks apart' and the taxol I could every 2 weeks or once a week for 12 week. I am just worried about how I will feel, is 2 weeks long enough to feel better in between, ect. I work from home, im an online professor, so that part is great. I also have 4 kids...I know stressing about "what if" on the side effect will do me no good...but still!!!!

Supernannymom

Hi avmom!

My pathology was "all over the place" which made my treatment a challenge. I had DCIS mass that was ER/PR+ and HER- and then I had IDC that was multi-centric(like spider webs) all over as well. My pathology initially showed tubular features, and after the mastectomy showed lobar...the MO was like "what the heck are you growing!" So she is giving me the AC/Taxol regimen! As I read through each persons post - each person BC is so different and their treatment unique - similar of course but it is very enlightening.

Does anyone have nutrition advice? Do you have any tips on supplements or nutrition? I was told to take probiotics?

Supernannymom

Jackbirdie!

Thank you...my MO told me I would have a pharmacy to help with side effects. She was concerned because I get motion sickness - and said I could be easily sick because of that, and she would make sure I have a bunch of stuff to make sure I wasn't so nautious. Not sure what motion sickness has to do with it! I purchased some hats/scarves today - i figured denial wouldn't get me anywhere and so I am trying to prep as much as I can.

Any tips of what to have in the house at the start of chemo?

Jackbirdie

Supernannymom - I bought lots and lots of hats. Different weights, skull caps easy to sleep in, knitted, slouchy, felted, all colors! What fun. I can't knit right now because I'm still very sore from dmx, so I went on Etsy, a site that represents artisans from all over the world. Clothing, jewelry, paper goods, vintage stuff, endless!

There are so many tips that have been given by everyone in this thread to prepare a chemo bag. A big project-tote type bag with inner and outer pockets. Books, phones, projects, stationery to write notes to people, snacks...and that's before you get into the otc medical stuff! it's really so much! Not to be lazy, and there are so many posts to go through, but to get the best cross-section of advice from all these wonderful ladies, I would get a notebook and open this thread at the beginning and scan all of the responses quickly, writing down anything that seems like it could apply. You can refine the list or eliminate duplicates later. You will probably have to invest an hour or two, but its an investment In yourself. You will be so glad you did it. You can make fun out of the shopping trips, or if you are short on time you can order a lot of stuff from...say...Amazon? I did that because I recovered slowly from surgery and didn't feel like retail therapy.

Even though I call it a chemo bag and take it to chemo with me, it also functions as that place in the house in the intervening weeks where I know I can find my stuff. Always. In one place.

Fill all the prescriptions given to you at your pre-chemo appt. Don't wait until you have nausea. Or bone pain. Just get them. Pamper yourself and prepare for any eventuality. It will help you feel in control. It will remind you that you love yourself enough to take the best possible care of yourself. Do not shortchange yourself on something because you think you might not need it or use it. The vast majority of things will be stuff you will use in your non chemo life at some point.

avmom

Hi Supernannymom. There is an entry from March 9 on this thread from the moderators with hints and a list of items that might be helpful. I think it's on page 9. Everyone is different, so what works for you and what works for others won't always be the same. That said, here are some things I've liked having:

Biotene toothpaste/rinse, for sensitive and dry mouth;

Eye drops/gel;

Sports/squeezable water bottle (for beside the toilet, to rinse after going);

A variety of bland, protein rich foods, like Greek yogurt, cottage cheese;

Sennakot, Claritin;

Warm cap (easy to put on and take off, to help regulate temperature

Jackbirdie

good list Avmom ! I take colace together with the Senekot. (2/1) They work differently and compliment each other. I started several days before chemo just taking the stool softeners etc., because I didn't want a painful and potentially dangerous repeat of what happened after surgery. Nuff said