Drea

Hi everyone,

This is my first post in the Radiation forum -- I'm still a chemo girl.  I'll be having my last of 4 cycles of TC on 10/28 (YAY!) and starting 5 wks of whole breast rads + 1 wk of boost on 11/12.  I had my mapping/setup appt today so it's very much on my mind -- I'm so freaking excited to move on to radiation and then be DONE with active treatment! 

Anyway, my rad onc is a minimalist as far as skin protection goes.  She recommends pure aloe (either gel, or straight from the plant -- I've got a plant in my living room, so all set there) and/or calendula gel if you wish, but her big thing is a simple oil.  The sheet she gave me suggests jojoba, sweet almond, or olive, but she also mentioned apricot kernel, or "whatever" I prefer.

I'm probably going to skip the olive oil -- I like to cook with olive oil, but I don't really want to smell like it, you know?  So since I'm going to have to buy something, I'm trying to pick the "best" one, but of course there's no data comparing jojoba oil to avocado oil or whatever. So I'm coming to the experts!

Did anybody use plain old oils during rads?  What kind?  Did it seem to work? 

Thanks so much!

Drea

Yes this varies from onco to onco, but I'll share the Decadron (dexamethasone) regimen mine uses.  I'm on TC x 4.  For my first cycle, I took 8 mg am and pm orally (for 16 mg total) the day before chemo; the day of chemo I get it IV (don't know the dosage); and day after chemo I again took 16 mg in two divided doses.  This is within the normal range for this particular use of the drug (I looked it up in my nurse's drug book!).  I didn't have any significant side effects, other than a mild, dealable wired/buzzy feeling.  I felt great (that is, no chemo SEs) actually.  The first night, I took an Ativan to help with sleep, and because, hey, I was getting my first chemo the next day, why not?  Other than that, I had no problems with insomnia.   On Day 3 of tx 1 (first day without the dex), I was really fatigued, out of sorts, and draggy.  I think *some* of that may have been atttributable to the withdrawal of steroids.  Typically, a steroid taper is not neccesary for such a short course, but I asked my onco if I could try to taper for my next cycle, and she okayed it.  So this time (my treatment's next Tuesday), I'll be doing the regular routine, but on Day 3 I'll take 4 mg twice a day, and on Day 4 I'll take 2 mg in the morning. 

I wanted to second what Otter said about asking your oncologist or onco nurse before changing/skipping any *scheduled* medication!  Please do!  The meds that you may get to take "as needed" (like maybe Compazine) are one thing, but scheduled meds are another.   Depending on the med, often they will be flexible and alter the dosage, schedule, etc. -- but it is really important to discuss with a doc/nurse first. 

Steroids can cause nausea... but they can also prevent nausea!  Of course I was loaded up on so many antiemetics (Emend before and after tx; Aloxi during; Zofran for 2 days after finishing the Emend 3-pack), it's hard to tell what worked, but personally, I've been giving the dex partial credit for my total lack of nausea or queasiness.

Juggling the meds is hard and confusing, because it is difficult to know what causes what, and everyone does react uniquely to meds and combinations of meds.  Everyone is chalking up all my severe bone pain to the Neulasta, but I "hear" that it may be the Taxotere, too -- I'm switching to Neupogen this cycle to see if that improves things, but if doesn't, I'll probably never know what's to blame... frustrating.

Best,

Drea

Hi all,

Someone asked about the SE of Vicodin (sorry don't know how to review the thread while posting!).  It is an opiate and central nervous system depressant.  It is not the strongest one out there, but it's pretty strong.  Most people feel sleepy/groggy/"out of it" in varying degrees -- it can be mild and almost pleasant, or strong and dopey and unpleasant.  You definitely would not want to drive until you know how you react.  Some people get dizzy or nauseous.  HOWEVER, in my opinion, you should not suffer pain if there is a medication that may help you -- particularly if you don't know how you'll react.  When I take a small dose of Percocet (stronger opiate than Vicodin), I have almost no side effects other than mild euphoria (oh DARN); others get sick.  So you may have a very easy time with Vicodin, and if it treats your pain -- go for it!  You shouldn't have to suffer!

Someone else asked about hair.  Today was my big day.  It's Day 13 of Tx 1, and I ran my hand thru my hair absentmindedly this morning, and came away with about 20 strands.  A few more run-thru's yielded the same.  I shocked myself by actually tearing up -- I just couldn't believe it was ACTUALLY FALLING OUT!  I recovered quickly, but am still really weirded out.  Took a shower, and it was sort of like a Japanese horror movie, clots and smears of wet hair everywhere, ugh.  All day it seems to be getting worse -- nothing is falling out on its own, but the slightest tug or stroke and presto, hair in your hands.  For some reason, the fact that it's just 10-20 strands at a time makes it especially tortuous.  I have really thick hair, so this will take a looooong time at this rate.  I'll probably shave it tomorrow evening.  I'm kinda looking forward to class tomorrow, where I show my nursing classmates what chemo-related alopecia-in-process looks like.  It's funny, if not for the hair, I wouldn't know I was on chemo -- I feel great.

Lani - thanks for mentioning the steroid taper!  I was going to ask my onco nurse about that but completely forgot -- I'll call her tomorrow.  I really felt that part of my rapid decline on Day 3 was from dexamethasone withdrawal...

Best to all!

Drea 

Drea - what ideas did y'all (nurses, etc.) come up with that should help next time?  I will be having my treatments with just IV also.  I think I read that drinking a lot of water will help plump up the veins?

Drinking lots of water should help, but unfortunately not a guarantee.  I drank over 3 liters of water (plus regular drinks) the day before chemo, and over 1 liter morning of chemo.  The nurses at my center also automatically use large warm packs to help dilate the veins. 

In my case, each stick actually got into a vein, and they got a tiny bit of blood, but then my vein would "clench" for want of a better word, and they would lose access.  I actually crimped a couple of IV catheters (which are very flexible and usually don't get sharp bends in them).  We decided that at least part of the problem was that I was watching attentively.  It didn't bother me consciously, but on a subconcious level I think my body was saying "NO WAY ARE YOU PUTTING THAT SH*T IN ME."  The successful stick was when I was completely distracted, laughing with a medical assistant I really like, and the nurse just snuck the needle in -- presto, blood!  So the plan next time is NO WATCHING, and try to completely focus on something else -- I suggested they arrange a puppet show for me.  Also, I'm going to ask if they will just start with the antecubital (crook of the elbow) vein next time, since that usually is an easier site, and I can be compliant with keeping my arm straight for the duration of the infusion -- I will whine a bit about my right hand being sore for a week this time too (it really wasn't too bad, and I only got a faint brownish bruise there, not bad for three sticks -- no bruise at the successful site).  And I will still drink tons of water day before and day of, because that certainly can't hurt!

Hope this helps!

Drea

Pokes here.

I'm doing four rounds of Taxotere/Cytoxan, and my onc felt a port or PICC line was unnecessary, and I agreed. I've never had a real problem with blood draws or starting IVs.  I had my first tx on Aug 21, and it took SIX STICKS (from 3 different experienced, skilled chemo nurses) to start my IV.  I'm not needlephobic, so the only thing that really bothered me was that if # 6 hadn't worked, we were going to cancel the tx, and schedule a PICC line insertion.  That would have sucked after gearing up to start chemo!  I've (with my nurses, and onc) decided to tough it out -- already 1/4th done after all -- and we came up with some ideas to hopefully make it easier next time.  I did end up getting it in the antecubital vein as a last resort -- it was fine, just had to keep my arm nice and straight throughout infusion to prevent occlusion.  

Thank you all so much!  That really helps.  I am going to talk to my nurse tomorrow about several things, and will tell her I definitely want to pursue the switch.  It seems unlikely to be *worse* than the Neulasta at the very least!

I am feeling very little bone pain today, just some moderate aches in my tibias (which is a weird place), sternum, and pelvis.  I got a wicked headache yesterday which I theorized might be caused by skull pain... but luckily some Darvocet took care of it, whatever it was!  (Thank you, opiates, for coming through for me at last!).  I have some new hip & knee pain -- feels like I imagine arthritis feels, complete with popping/clicking -- but I suspect that's the Taxotere.  I really appreciate all the empathy and good wishes.  This experience (not just the pain, but the constipation, the fatigue, etc.) is making me (I think) a lot more understanding of those who suffer from chronic pain, diseases that cause severe fatigue, and even seemingly "simple" ailments like constipation.  "Feeling well" is something that is so easy to take for granted...

Thanks again, and best wishes to you all!

Drea

PS:  I just read back a page on the thread and wanted to say thanks to Sandra for the well wishes! 

Also I agree with what everyone said about bad SE's getting the most "press" -- you'll note that on Day 1 and Day 2, I was not here crowing about how great I felt -- it wasn't til the crash today that I felt compelled to come here and vent a bit!

Many have done it before us, and many will do it after us -- we can too!

Hugs,

Drea

Hi all,

Posting from work, so I'll be quick... Just wanted to let you know that I WILL be joining you.  Saw my onc on Thurs, decided to go ahead with TC, and set up a schedule: 8/21, 9/11 (an easy one to remember!), 10/2, 10/23.  So if all goes according to plan (not holding my breath), I should be done by my favorite holiday, Halloween.  Wonder if I can incorporate my bald head into a costume?

I'm going to have bloodwork the day before tx, at the community hospital where I work (5 min from my house as opposed to an hour to the hospital where I'm being treated) which should save time during chemo day itself, and then the day after I'll get Neulasta at an oncology office next door to the community hospital.  I was hoping to self-administer, but the onco nurse said insurance won't cover it -- at least I don't have to drive all that way for a single injection!

Oh, we talked about the raw fruit/veggies thing.  My onc says that although it's a theoretical risk, to be on the safe side, she does recommend avoiding raw, soft/thin-skinned produce that can't be peeled, especially lettuce, spinach, sprouts -- all the stuff that has had outbreaks of E. Coli, etc. that has made even healthy sick!  She said if I want to, I can just avoid them during days 7-14 of each cycle.  I'm glad it's going to be fall, so I can get my veggies in soups and stews (my partner's already promised me carrot-ginger soup)... I eat a lot of salad in the summer!  I'm also going to stock up on frozen berries, and use those in smoothies, oatmeal, etc.

Okay, not so short!  I'm just glad to have a plan in place, and though of course I'm scared sh*tless, eager to get cracking.

Congratulations, Kathy on being done!!!  And I'm  sorry for those who are having a rough time with the SE's...

 Best to all,

Drea

A question about the avoiding raw fruits/veggies, restaurants, crowds, etc. advice... Those who are being told that, are you getting Neulasta shots with every tx?  Or only if your WBC count goes below a certain level?  I had the impression that routine Neulasta should prevent neutropenia, which should prevent you from needing to follow all these precautions!  I'll ask my onc on Thurs of course, but I'm curious...

Thanks!

Drea  (probably starting TC on Aug 21)

(Cross-posted to the YSC boards... sorry!)

So I found out on 8/7 that my Oncotype DX score is 25 -- not "high" but high enough in my (and my onc's) mind to justify chemo.  I'm 90% sure I'll be starting Taxotere/Cytoxan on 8/21 -- have an appt on 8/14 to hash out the details. 

This evening, I am freaking out abou the wig thing, spending way too much energy on it.  No doubt to distract myself/give myself the illusion of control. But, I'm hoping I can impose on you all yet again to help me figure this out.

Although I think I will go bare or use hats/bandanas most of the time, I feel that I need to have a decent wig to wear to clinicals (nursing student) and possibly work (I work in registration at a hospital -- often the "first face" a patient/visitor sees). Yet I am totally unnerved by the idea of going to a wig place and trying to pick something out with a well-meaning salesperson helping me. I have a vision of trying to be polite as one big-hair poufy monstrosity after another is foisted upon me, my facade of dealing-so-well-with-all-of-this slowly crumbling. Also, my real hair is very thick, I can't figure how a wig is going to look anything but silly on me before baldness. I would really like to just buy something on the internet like a normal antisocial Gen-X'er and be done with it.

I have managed to figure out that I want a monofilament, synthetic wig, and that I don't want to pay more than $300 or so. I even think I'm buying it from www.wigs.md because they have one of the better return policies. When it comes to actually picking an actual specific wig.... I'm going round in circles.

If you are a wig-wearer (or even wig-owner-who-decided-wigs-aren't-for-her), and especially if you have a mono synthetic, could you please tell me:

1. The brand & model of your wig
2. What you think of its quality, passability-as-real, feel, etc.

I think that if I heard that a particular brand seemed to make most people happy/sad, or if a particular model pops up a few times with good reviews, or if everyone says "Feh on Henry Margu," or something, that will maybe make my decision a bit easier? I'm hoping at least.

Thank you all!

Best,
Drea