Starting Chemo March 2016

Cin54

I have put in for short term disability at work. Between travel demands (2.5 hrs. Both ways on a good traffic day) and the treatment schedule/side effects, I just can't work a regular schedule at this time. I'm hoping that once there is some sort of rythem, will there?, I may be able to work a reduced schedule with some hours from home. I've been at this job for a little over a year after being laid off after 22 years at an agency that merged with another so I don't have the "CLOUT" I used to. It's a bit unsettling. I have the FMLA in place but living on 50% of my income will be a test. My spouse is retired, etc. etc.

I know that money is not as important as my health and all the justifications that go with it. The reality is scary and I dislike doing myself the disservice of not feeling by smothering myself with HOW GRATEFUL I SHOULD BE.

There, I said it.

HolaSandy

Candy,

If you are not scheduled for blood work before each chemo, I would advise you to ask about that. You should definitely be getting your blood tested no more than 5 days before your chemo infusions. (I was told ideally 1-3 days before, but up to 5 is ok) They need to be checking a number of things to ensure that you will tolerate the chemo meds appropriately. As for neulasta in Canada, I am not on it either, but Health Canada has issued a warning about it because of the increased risk for Capillary Leak Syndrome. Which is exactly what it sounds like. Blood can leak into your body which comes with a whole range of its own problems. That said, for some the benefit outweighs the risk and if you would like more info about it, please ask your nurse navigator or MO.

I hope this was helpful!

Kristyn

MFPM

Nancy, Thank you for replying.  I'll be getting Cytoxan and Taxatere.  I called the Dr.'s office today and got a call back from 1 of the girls who said I'll be getting an I.V. of Decadron (steroid, any side effects?), then another 1/2 hour of I.V. Zofran.  I told her of my concerns not having an anti nausea med here already, not wanting to wait around a pharmacy later that day but she said the Dr. said I may not need it, which I am not going along with!  I told her knowing me, I will surely need it and she said it's up to the Dr., but summed it up by saying he could call it in while I was there.  I am not happy about any of this, now stressing even more.  I will tell him the minute I get there on Wednesday to call in the Zofran as it was agreed upon.  At first he was thinking of a 7 day anti nausea patch, but I think I'd rather be in control with a med that I can take, hoping it will work.  I will eat early that day, not much, knowing I'll be so  upset.  Sounds crazy but how is eating after chemo, as in that day?  I don't even have a clue as what to eat at any point during this and wonder what is good or easy in this case.  Is there ever a time when "normal" eating and meals are okay?  I'm so underweight as it is, but that's nothing new.  She told me they serve Ensure there, which I do drink at home anyway as a healthy snack, but doesn't sound appealing to have during treatment.  I asked about drinking water which I've read about so often on here and she said it didn't matter, but of course I will and though she said I could bring a snack, I don't think I will have an appetite during. I am so afraid as I'm sure everyone is going through this and am worried about so much.  My cardiologist said no to Adriamycin which he wanted to give me also.  I'm worried about cardiac problems and just as much breathing problems, having copd.  He said the steroid will have me breathing fine.  I'm not having this in a hospital as first planned but went private so treatments are done in the house, a bit of a concern in case of an emergency.  There's just so much and I'm overwhelmed.  I surely know I'm not the only one and sorry for the complaining, but I'm kinda alone in this so you, along with everyone here is a tremendous help.  The only thing the Dr. said as a side effect was I'd lose my hair and naturally I just want to be healthy, though it will be strange emotionally.  A friend said she'd come by and cut it when needed, plus I'm looking wigs from the A.C.S., along with hats, scarves etc..  As for constipation, which is the easiest or gentlest laxatives on the stomach?  Pill or liquid form?  As for Neulasta, he never mentioned it except getting my blood checked every 3rd week, in which case if something was off, he'd have to address it.  I wish he'd be more on top of it though, in other words, preventative!  I'm getting more nervous each day.  I'll be back on here tomorrow, so any advice, please let me know.  Thanks so much again! Marilyn

Jonsey22

No they check before the next chemo. A couple of days prior or even the same day. Just wondering why some check during the 3 weeks between.

Mecool

Darn it! Bumped my start date to the following Tuesday, 3/29. Never thought that would be something I'd be disappointed about but I'm just ready to get started. The sooner I start, the sooner I'm done!

That's interesting that someone would not have labs done before treatment....my schedule is labs on Monday, AC Tuesday, neulasta Wenesday. Off week will still have labs on Mondays. This will go for 8 weeks (4 treatments), one week off and then 12 weeks Taxol (except for 4th of July week which they were kind enough to give me "off" as we will be on family vacation!). I feel like I've learned so much reading through what those of you who have already started are experiencing so thank you! My docs are big on anti nausea so they have that covered. I will get Zofran and emend in iv with my AC and then have a strict schedule of Zofran for at home for 3 days. As well as compazine and ativan if I feel queasy above and beyond the zofran. I also have the senekot and ready and I already take a fiber probiotic regularly as well as daily aloe. I plan to stay ahead of things as much as possible in hopes of living as normal a life as possible! Perhaps a bit optimistic but I've found that my attitude and optimism has played a huge part in this journey so far!

Sending everyone feel good vibes today and always!

Seashine

@ HolaSandy that is so interesting about the Neulestra in Canada. My MO made it sound so casual, like oh we just give this to you and it helps with your wbc count, no biggie. Reading about everyone's SE from that alone has me scared of the shot, which apparently I give myself at home a few days after treatment.

In terms of blood work, mine gets drawn one day ahead of each treatment. They have already drawn and checked it twice and I have not even started chemo yet. Once was for chemo and I think, and the other time was just routine when they were doing all the tests to get the DX.

My MO is all over all the nausea meds. I have a lot of faith in my team after reading your posts, they seem to be on everything. A friend who is going through this told me to eat a ton of Kale, asparagus and cabbage the day after chemo as it draws the toxins out of the system. Anyone hear of that?

I'm feeling more ready for this. It all starts next Wednesday and I can't shake this feeling that every day that goes by the tumor is growing. Not a good feeling as it is big enough already. I want those drugs to shrink this invader under my arm so badly that I just want to get started!

azrescue

@seashine it looks like you & I are on the same chemo drugs. My MO's office is the same about the Neulasta they act like it's nothing but a thing. I can say I will NOT forget the Claritin this time. Ouch!

I have only had one chemo treatment. I'm getting ready for the next one on the 23rd. But I can already tell that the lumps under my arm are MUCH smaller & the main tumor is changing in size & texture.

Seashine

@azrescue that is such great news about your tumor. That is one thing i feel grateful for, being HER2+ means that we get targeted drugs that shrink the dang thing. I remember my MO saying that some people have a complete pathological response with TCHP. May it be so for you and me and everyone else!

sandcastle63

I finished treatment 3 of six on Taxotere. Have noted some peripheral neuropathy in feet but increased my Vitamin B6 to 100 mg twice daily. With warming weather plan to walk more. I've got mixed feeling about any of the cold therapies. My clinic strongly encouraged the use of cold caps to decrease hair loss. I've lost less than 50% of my hair on my head (don't have to shave my legs which tells me that's the area of my body being affected most). I think our bodies respond and we should be aware of the responses and try to combat them as they occur. Each of us is different and we need to respond as our bodies tell us. Open communication with your onco is imperative. I've had so many serious side effects from my chemo regimen and after three treatments, it's not perfect but I can function. Keep telling them how you feel. Ask questions and get solid answers you understand and a goal related plan that is yours and yours alone.

phaila

how great that your tumors are shrinking! Good luck to you all:

Denise-G

NancyHB - was going through BCO and saw your post. Wanted you to know not a day goes by I am

not thinking of you and keeping you in thoughts and prayers.

Myraknits

sea shine and other fellow HER2+,

Just popping in from the Feb group to say I went to my SO last week after 2 rounds of TCHP and she said my tumor, which was previously about 2cm is now barely detectable. There was a recent study in the British Journal of Medicine specifically about HP and another targeted drug for HER2+ patients that showed a marked shrinkage in the first 11 days! Very very good news! I feel grateful that these drugs are available for us now and sending lots of positive vibes your way for similar results!

Seashine

1. My MO says he does not want me to work since I work in a K-8 school which is like working inside a giant petri dish, not good for someone on Chemo. Anyone else have this same experience?
2. Since I will start treatment AND not be able to work, my whole life has been tipped upside down in the last 3 weeks, that was not fun. Anyone else?
3. I want to shave my head before my hair starts to fall out, but i don't want do it before 1st Chemo treatment. Anyone else do this? What did you do? I have heard some things about how short to shave, not too close, so that you can still allow the fall out to happen. What was your experience?
4. I have two young children at home (10 and 6). I am nervous about performing mommy duties while on chemo, is this possible? What about getting sick from them?
5. I have seen some great prep lists, anyone have must have items for getting through?
6. Also, please share your favorite Netflix binge!

Starting TCHP on weds of next week

HRwinter16

Good luck to everyone just starting and everyone worried about S.E.s - I hope it goes well... I am day 13 and waiting for the hair to start falling ;(

Marilyn,

I think you should bring some snacks just in case. For my chemo I was there over 5 hours. A little something small to eat can help ward off the nausea. Good luck!

***does B6 help w neuropathy?!

Thinking of everyone this weekend

Xo

Heidi

HolaSandy

myraknits, I saw that same study and was excited for HER2+ patients! That is great news!!

Seashine, I have also been told that I will not be working for the next year or so. I'm a nurse and work in long term care as well as acute nursing. I was pretty bummed but such is life. Add this to the fact that I was denied disability and EI because I have not worked enough hours since returning from mat leave less than a year ago.

I started chemo March 11th and had my hair long for that treatment and had my MIL cut it short a couple days later. It has barely started shedding in the last couple days. Like maybe 2-3 hairs if I run my hands through it. I'm not waking up with clumps of hair on my pillow or anything. I'm hoping to keep mine through Easter but if I have to buzz it before that I will. Everything I'm reading says to buzz to 1/4" or so? I'm sure some of the women who have already done it can speak more to that.

My daughter will be 2 next month and looking after her was my greatest concern. I was worried about not being able to do enough as well as worried about catching infections from her. She recently decided that she loves hugs and kisses so of course we are concerned about any bugs going around. I was fortunate that my mom was able to come stay and did the majority of household duties and toddler care immediately after chemo, but my SEs were well managed and I am confident that I could have handled it on my own if I had to. Your kids are old enough that they can be helpful and will understand that you need to take time to rest each day. Do make sure that you don't overdo it, especially in that first 7-10 days. As for getting sick from them, aside from living in a bubble, you can only make sure that everyone practices good hand hygiene. That will be your best defence. I use Lysol wipes on our light switches, door handles, taps, etc. Those high hand traffic areas.

I did buy the biotene mouth wash and use it daily as well as eye drops. I wake up every night with dry eyes now and those are a must have for me!

Netflix: such a wonderful thing haha! Canadians have different stuff than Americans (read: less awesome stuff) We have been binge watching Scandal since before all this and it is sooo good! We also watched all of Dexter and we did have American Netflix for a little while and I was watching the Following! I was a little bummed that it's not on Canadian Netflix. Also, the Office and How I Met Your Mother are great for comedy! I could go on... I watched a lot of Netflix while I was up for middle of the night feedings with my daughter last year haha

Jonsey22

OMG - I have binged on Suits, Breaking Bad, Scandal, Orange is the New Black, and Wentworth since December. looking for something new too.

I watch an episode every day on the treadmill.

Best part of my day!

I am onday 13 and haven't lost any hair. I shaved mine down to 1/4 inch on day 8. I don't know what is best but decided I didn't want to see clumps coming out.

Candy

Italychick

seashine, I buzzed to about half an inch, oncologist said don't shave due to risk of cuts and infection. I lost my hair on day 21, never cut it before then, then buzzed it because suddenly I had a two inch part, definitely not attractive. I still got folliculitis, but it was managed with topical Clindamycin cream. The worst thing was getting a bee sting on my arm, nurse practitioner freaked, wanted me to go to urgent care immediately. I was like whatever, and went to primary care doctor and took a prophylactic antibiotic and used a topical steroid cream. It was a non-event although it did leave a hole behind.

I did Neulasta, and worked full time and kept my grandkids (ages 1, 2 and 4) two days a week all through chemo, booger noses and all. But my white count stayed high, and as long as it did, oncologist said live your normal life, so I didn't worry. So the illness thing really depends on whether your white count, especially neutrophils, also called baby whites, stay high. If they do, you still have the ability to deal with infections, etc.

phaila

Italychick

Netflix

Just call Saul!

Portlandia

Xfiles

Cowgirl13

Some Netflix binges==

The Killing (I was surprised it was so good-tick to season 1 and 2). Call the Midwife--wonderful! House of Cards. I wish I'd had Netflix when I was going thru chemo.

Pammac47

Nancy,

Was wondering if they did with hold treatment or if you've healed enough to continue?? I got my schedule and I can see how once you commit to this amt of time it could be daunting to push timeline forward. My schedule is bi weekly 3hrs and following day iv fluids for 2.5hrs. Just got port and I'm sore can only imagine how bad an infection would feel. God bless and continued healing

Pam

Sheri64

Best Netflix, Nurse Jackie, Parenthood, Army Wife's, Shamless (only for adults who like British humor), Weeds.

HRwinter16

my tv faves:

BILLIONS

Elementary

Good wife

Suits

Madam secretary

Modern Fam

NancyHB

*waving* Hi Denise-G! So nice to "see" you on BCO. Thanks, again, for building your awesome online store!

Netflix bingeworthy - you all mentioned my favorites (House of Cards is a MUST SEE, and Portlandia), but I'd also throw in Broadchurch (excellent!!!)

My next chemo is scheduled for Tuesday. I fully expect to be able to complete this round. The infection has abated some. Turns out one of the reasons I got the infection was because of the radiation I received to the whole breast and underarm area 4 years ago. My surgeon explained that even though it looks "normal" the tissue is forever changed. It was just a perfect storm of events, and while I'm still tender the area is no longer red and inflamed. I threw away my old sports bra and bought an Iron Bra (those girls aren't moving one bit and I hate it, but it's a must-have), as well as my cutesy underwire and bought a soft, padded non-wire that should help, too. I'm going to run this morning for the first time since all of this happened, so we'll see how it goes!

My hair has been falling out all week. I used the sticky lint roller and was able to remove about half of it that way (painless and easy). I finally shaved the rest last night - I starting to look like I had mange. My head is cold and my scalp is white with some Dalmation-black patches of shaved follicles. But I'm glad it's finally gone; the anticipation of waiting for the hairfall is almost worse than the actual leaving.

It's unfortunate that this disease robs us of so much, including our ability to work. I had to leave my job four years ago as a foster care worker because I knew I would be exposed to far too many nasty germs. It was infuriating that I had to make that choice - and even worse because it so negatively impacted family finances. This time around I was told "we'll wait and see" on the promotion I've been working towards, since it's possible I won't be dependable for the next several months. I'm sad and angry and tired of this stupid disease.

Much love to all of us as we move into our next week, whether we're recoving from treatments last week, or facing new or even first rounds this week.

Jonsey22

One or two hairs coming out each time I tug with fingers. Guess itis starting. Day 14 on the mark.

NancyHB

Candy - that sounds about right. It starts slowly for a few days and then it'll start shedding like crazy. If you have me, the sticky lint roller helps too. Hope your scalp isn't too tender yet

Mecool

Well, I just bit the bullet and ordered some on the elastogel cold caps to try and preserve my hair. The only reason the hair loss bothered me was because I don't want the entire world to know what I'm going through. I'm a very private person and if I can keep this to my family and close friends and avoid being the topic of discussion among my very gossipy co-workers then the $350 will have been worth it. I'd also love to avoid having my kids (7 and 3) need to know any more about what's going on.

Any one have any experience with these. I think I read up a few posts about someone just using a penguin cap and not thinking it was going to work, did you not follow the directions exactly?

BKGameGirl

Nancy, your employer can't pre-discriminate against you for a promotion that you're qualified for just because you have to undergo chemotherapy. Have you read up on a site like Cancer and Careers? They have free webinars and they have employment law experts that can advise. The notion of dependability is exactly why we have things like short-term disability and sick time. Every situation is different and personal, but I urge all of us to fight for every employment right that's owed to us and not to roll over quickly to give up on promotions or not to fight for alternate arrangements (such as more virtual time or accommodations to remain infection-free) just because it makes our employers or coworkers more comfortable. Don't give up something you don't have to in advance.

BKGameGirl

Immune system & neulasta/neupogen/granix question: why are some ladies starting "already" with the immune system support shots? Are your white blood cell counts already low enough to be infection-prone after 1 or 2 treatments? I haven't started these yet and just wondering what the threshold is or how you and your MO made the decision to start if you're not yet immune compromised?

phaila

mine immediately does it the day after every chem

Mecool

Mine too. It's just part of the AC regimen, I will have treatment on Tuesdays and the neu injection on Wednesdays. Only for the 8 week biweekly AC though. I won't have it during my 12 week weekly taxol.