April/May 2012 Chemo hang out

IndigoMont11

Hi lsharvey822, I have been away from my office since 3/21 when I had my surgery, and I'm working (teleworking) part time from home. It has been an experiment to figure out how much and what I can do but I'm making progress. I had originally wanted to go back to the office at least a couple of days a week after this month, but that was before I found out I'd be starting chemo one month after surgery. Now I don't know if I'll go back to work in the office during chemo at all, but I'm hoping to get up to 8 hours most days.

SadeSurvivor25

I've used the restroom several times today but the last time I just so happened to look in the mirror and my edges were gone. It freaked me out. I had my hair braided to the back because family and friends didn't think it was a good idea to cut it so soon. One of the braids just ripped away from my scalp and I lost it. I called my mom over to cut what remained off...then she says she wished she would have let me cut it before it got to this point so I wouldn't be so devastated. I've somewhat shut my DH out. I know it's not good but I can't face him. I feel so "unpretty". I just hope I don't go into depression. It's just hair. It will grow back, right?

23 days after first treatment (two days after second) my hair is gone.....

chapter4

On the claritin issue...I didn't bother the first round but I'm taking it this time with no pain...I think it's worth a try.

dancetrancer

Oh Sade, I hope you are feeling better.  <hugs!> 

Chapter4 - thrilled to hear the Claritin is working for you.  Such a simple answer to prevent severe pain!   

velutha

Sade: Be really careful, don't get dehydrated.  If it gets bad enough, go to the emergency room for fluids.  

Claritin: If you didn't use it and didn't have pain w/ first cycle, you may have pain with later cycles.  I found bone pain was worst cycle 3 of dd a/c (actually, just about everything was worst cycle 3...).  If you normally take allegra or zyrtec, I think that's fine to take instead, but ask your MO.  

Working: I worked 8 hrs/day starting a week after my 3rd cycle.  I was on my feet a lot, and it was not ideal, but it was ok.  I think if you work with sympathetic people it's fine.  If you work with jerks, it can be emotionally devastating.  I've reached a point where I really don't tolerate anything other than appropriate understanding, but I've been in treatment since Nov, chemo since Dec, so my fuse is short.  If you have a20 wk regimen like mine, I'd work part-time to conserve energy if possible.

Hair:  Get someone to come to your home and shave it for you, first with clippers, then with a straight razor.  I agree, watching it fall is awful.  Once you get it really short, it's just stubble, and watching stubble fall isn't as hard.  Get 100% silk scarves (squares), they're good for summer, easy to wear, and the fabric isn't irritating like synthetic material.  Also get a sleeping cap or two.  I like headcovers.com, their prices and selection are good.  

Give yourselves a little breathing space and time!   The great thing about feeling like crap is it passes eventually, and you'll feel something else later. 

I have ONE taxol left!!!!!  

Melrosemelrose

Yay Velutha--- one more Taxol left!!!!  We will do the happy dance in your honor on May 3rd!!!!

sandik

Day 4. Feel a little better. Just tired I think. Did not do the event last night. I came home. I didn't go to work today either. We may need to adjust my days. I need to be good for weekends. I have brides getting married who have already paid me to be there!

On the other side of things, Im really scared of this aux. Node that's still in me that's got cancer in it. I can't help thinking, how fast is it spreading, or trying to spread? Why did it go there instead of the sentinal nodes? This thing is just scaring the crap out of me!

Melrosemelrose

Sandik- Sorry you are on edge with the node.  You may want to talk more to your onco to help give you a little peace of mind!!!  FYI- that period of mine showed up this morning.... lovely.  I'm glad it did because yesterday, those particular body parts of mine were letting me know, --- hey I'm still here and I work--- just feel better today since it started.  Hang in there Twin.... we will get through this trip through chemoland together!!!!  HUGS!!!

beth1965

Velutha- i am getting  DD  AC/TAXEL i was wondering how much different the Taxel feels or if it does much. Did you still feel nausea the same?  I am over halfway with my AC and will be getting my first taxel in about 3 weeks any helpful hints you have would be greatly appreciated.

And congrats on your last one you must be so happy!!!  I am happy for you

Stacie

Harvey-Yes but I have a unique job. I work from home and travel. My employer gave me a travelor to tale trips for me and I am working from home. Took 2 PTO days per round thus far. I will take a trip each round on my good week as tolerated now that i know my SE cycle.

velutha

Thanks melrose:)

Beth: taxol is much better than a/c. Nausea has not been much of a problem, though the steroids have given me some acid reflux, and I still have some dry mouth. The first round is the worst b/c you are on a ton of steroids to prevent allergic reaction and you are still coming off the a/c. My hair started growing back around taxol #7, still look bald at #11.

Taxol tips: don't do anything to stress your nails. Ice if you want and your mo will let you. Rest a lot. Ask for drugs to help you sleep if the steroids won't let you. Ask if you can cut back on steroids at cycle 3 or 4 if they don't ask you. Plan to wear layers all the time, I get hot flashes and chills.

The other thing I would say is line up volunteers/support/therapy for yourself now, while everyone is still paying attention and the bald head is fresh. This takes a looong time. You get tired of chemo, your family gets tired of chemo, and everyone else will start to move on. If someone volunteers, give them a task to do a couple of months from now.

You will feel better on taxol, but I do not feel normal. I am anemic, and it makes me tired. At cycle 7, I was ready to quit, b/c I just hated the idea of another month of loving the armchair more than living my life. But I work, I feed my kiddo, I flew to Miami for a wedding, I took a gentle yoga class. So it's not all whining and fatigue.

IndigoMont11

Velutha, happy for you too and a bit envious! Thanks for being here with the rest of us who are just starting this journey; I know your experience and knowledge sure helps me.



I was going a little crazy with the period thing - I've been a little worried that they will look at my blood counts when I go for my port and say they can't do it. But I'm glad to tell you that it's once again tapering off, and hopefully by the 9th (when I get the labs) it should have stopped. I did ask the MO about it, and was told the chemo was just affecting my ovaries already. (Not knowing what to expect, I didn't think chemopause would start after just one treatment).



So trying not to worry needlessly - all my labs were great starting out on the chemo.



And just sharing the period stuff; Melrose, know you're on a different cocktail than I am, but if you notice changes it's probably the chemo. MO said not to worry unless there was severe bleeding/cramping (there wasn't).



I guess I should be into neutropenia by now, but except for the fatigue I don't feel bad. The nurse said you get to know what your neutropenia feels like; this feels like tired legs and Benadryl sleepiness.

Melrosemelrose

IndigoMont11- Thanks for the heads up on the period thing.  I can tell you that those particular body parts started letting me know that something was happening after this past Tuesday's infusion.  Just glad, it started......  Also.... just glad we are together to go through this.  Still need all the purple support and wearing those big girl boots!!!!!

IndigoMont11

You betcha - I was thinking about us and those purple boots yesterday!!! Hugs!

C-squared

Beth- I would just keep in mind that every individual's experience can be different.  For instance, I recently had my first AC infusion and other than a TERRIBLE headache it was actually better than any of the 7 Taxol infusions I had prior.  My pre-meds are the same.  For me, the Taxol SE lingered (i.e., stomach upset for days/weeks), the AC SE happened, went away, and have stayed away since.  I'm keeping my fingers crossed for the next three to treat me as kind.  And even my chemo nurse(s) have told me that Taxol can be worse.., it just depends on the individual.

Good luck! 

CC

beth1965

Thanks so much for the info velutha an c-squared i really appreciate it!

sandik

Im finally awake. Holy smokes! I slept pretty much all day! Feel fine. Just drained I think.

kjiberty

I can't tell you all how much this thread means to me.  It's nice to know we are no alone in this and I appreciate all the tips.  I am 10 days out from Round 1 of the T/C mix and get the next one on 5/10.  I got my wig this week.  Bought 6 scarves, and 4 hats today.  I am trying to get myself psyched up for the new me.  I have a head "shearing" appt. next Friday (15 days from first treatment).  No hair loss yet (thank God), but I know it's coming.  I am trying really hard to "embrace" this.  

lsharvey822

Velutha - I need help with the offers for help!!  sorry that doesn't sound like a problem I know but everybody wants to send food and my hubby's pretty good with all that when he has to be.  I really need help with logistics...who's going to get my son to/from school while I'm at chemo, etc.  How do you redirect them?

velutha

Lsharvey,

I use Facebook, post what I need way in advance. After someone helps, I post a thank you. I think the public nature of fb helps motivate people to do precisely what I ask. If you volunteer and then don't follow through, in theory you took an opportunity away from someone else. I also have sent out emails to groups of people - my son got a birthday party invite from a friend, and I emailed all the other parents to ask for a volunteer to take him to/from.

I'm pretty fortunate b/c we have a lot of friends who are stay at home moms or only working part time right now, and I still don't have a ride lined up for my last chemo.

dancetrancer

lsharvey - I use caring bridge and takethemameal.  A friend offered to coordinate food, so she set up the take them a meal site for me and runs it.  I spelled out my food restrictions and the importance of not making or bringing me food if someone has been ill/family has been ill.  I also told them we really don't need tons of food - just one meal a week - b/c it is just the two of us, plus DH is good at getting food together for me, too.  The one meal a week is really nice and not overwhelming at all.  After my surgery people brought us so much food that went to waste - I wanted to avoid that.  

I use my caring bridge to post occasional requests for errands when I'm really sick and need something from the drug store, yet DH is working.  I also did use FB once for this, but I am low key about my diagnosis on FB, so I didn't say what I needed.  I just asked if anyone could run an errand for me, and if so, to private message me.  

Melrosemelrose

Isharvey-- I have a few friends who always ask how they can help.  One of them took the lead and said she would be the team leader and be the one to organize people/logistics and be my "to go" person.  Fortunately, she is able to help me at any time for anything.  She and I have chaired events and worked together at our children's school so we know each other pretty well.  Our youngest children are now seniors in high school so I don't have the same childcare/school needs as you.  However, it may be helpful to bring your gal pals together and let them each be in charge of a particular task--- that  way you know you have it covered and they each know that they are making a very important and vital contribution in your family's lives.

dancetrancer

Re:  the period thing, well, let me join in on that train.  I thought I was going straight into chemopause, since I was a week late (have only had 1 TCH).   However, yesterday it showed up.  I'm really relieved...not quite ready mentally for chemopause...but I know it can still happen since I'm early in chemo. 

Melrosemelrose

Since I'm in that Herceptin clinical trial and getting the Herceptin, I get to keep track of my periods for the next three years.  If they actually conitnue for that long, I'll be almost 60 yrs old!!!!  Gee.....

Anonymous

Taxol should be easier than other chemos, agreed--but sometimes it's more difficult; we are all different and react differently to medications. For me Taxol was easy. I hiked after each weekly infusion, my hair grew back starting #8 and by 12 I was going topless. It's been 5 weeks since my last infusion and my hair looks normal, like I wanted it this way.

No fatigue,no weird food issues (they went away after I was done with DD AC).  No nail issues b/c I iced. My lashes thinned on taxol but didn't fall out all the way; I kept them through AC.

I didn't wear sleep caps or scarves. I felt weird with something on my head at night and my bald head helped keep me cool anyway. The airy floaty scarves didn't fit my personality so I used ball caps and berets instead.

I thought I wasn't ready for chemopause but when I realized that it would prove to me that the chemo was working and keeping estrogen levels down--therefore not feeding my partycrashing beasts--I appreciate every hot flash I have (and they havent' been bad so far).  

Claire

sandik

I think my worst is over. I felt like walking death on Friday. Yesterday I could not keep my eyes open to save my life. I slept off and on all day and did not get out of bed. Family woke me up to drink. Got up this morning and felt fine, just tired. Went to work for 1/2 a day then came home amd relaxed. Hubby n son made me stew, an old family recipe that was exactly what I needed to get something in my stomach. Haven't had coffee in 4 days. I was afraid it wouldn't agree with me. Had horrible heartburn all day. Son made me some homemade lemonade. Tasted aaesome! I think Im almost back to normal!

Melrosemelrose

Sandik- Hope you are feeling better now.  You can take something OTC for that heartburn if you need it. 

sandik

Thanks. Ive been taking pepcid. When I am awake to remember. I don't think I have ever slept like that! How are you making out?

Melrosemelrose

I'm doing okay.  This past Thursday, less than 48 hours after my chemo, I started to feel not so good.  By midnight, whatever I definitely was feeling unwell.  I ended up staying up for a few hours since laying down made me feel worse.  So I sat in my desk chair until I was too tired to sit up.  Friday morning, I was feeling a little better.  It was definitely a "stay in your pj's" kind of day.  I called my onco's office to get some answers to my post-chemo questions.  I was reassured that I was doing okay.  I've kept up with the water drinking so flush that chemo through and managed to keep eating 5-6 meals everyday the day before the infusion.  Those anit-nausea meds must have worked since I didn't need to take any after Friday's regular dose of Zofran.  Still burping like a an old sailor but it's the chemo and all of the air I manage to swallow when drinking and eating.  Now I'm just tired so I nap whenever.  BTW, that period has made its appearance .... just lovely. 

sandik

Mine was due yesterday. Although it had always been messed up. We'll see.