Starting Chemo in March 2014

Sandydoc

so sorry about your migraines.  I'm a migraneur also, but post menopausal has helped, and I take low dose topirimate prophylactic which prob helps too.  The bald head helps a little because I can keep it cool. A study showed that for every 9 degrees of ambient temp change, there is a surge in migraines.  Neutrophils went critically low, and a shout out to those with low neutrophils: don't do what I did!

Docs are the worst patients; as we think we're impervious to the usual problems, and then get everything.  Follow the neutropenic diet. I didn't.  I came home, had expired (1week) salad greens with a huge hunk of Gorgonzola. 2 days of watery diarrhea, now bloody.  Husband off to store to buy a thermometer.  Yes, I don't have one.  Cheers all!

alycallie

xrayalli and jodi040812:

 just wanted to say hi and connect with ya'll. I was reading through this thread and saw that one of you is being treated at MD Anderson and the other's doctor is follow MD's protocol. I am being treated at MD Anderson also and just had #6 of 12 weekly Taxol treatments on Monday. Tomorrow will be #7! Woohoo. Then I will be getting 4 FAC treatment every 3 weeks.  I've had some tummy pain, loose stools and low energy but nothing major as far as side effects. I'm guessing the FAC will be harder.... 

Xrayalli

Sandydoc-wow, you are a bad patient, haha. I also take topimirate and amitryiline (sp?) prophylactic for migraines, God, I am sick of migraines. That's interesting about the cool head, maybe thats why I haven't had one, knock on wood, since I shaved my head. 

Alycallie-I am just one treatment behind you, the tummy pain and bad taste in my mouth never seems to go away. Have you noticed accumulating fatigue with Taxol? Is FAC fluoro- something? With AC? Isn't it interesting the different protocols people are on, Jodi is the first one and now you who get Taxol first. My MO told me chemo is better tolerated doing Taxol first. Welcome to our little group

CaliKiwi

I'm guessing the F is Flouroucil of 5FU as my chemo nurse says when she injects it.  I do the FEC combo, where the E - epirubicin which works like Adriamycin so it sounds like FAC is another variation of that.  Seems oncologists all have their own cocktails they prefer!

Tomorrow is my last good day then infusion number 3 for me. The dread is starting to creep in!

Xrayalli

Think positive, Kelly, hoping for good days to follow, keep us posted. I almost got 5FU, when my MO was taking his sweet time to decide my treatment that was one he was considering. Glad they know what they're doing! 

ChrissyLB

So very thankful for you all and for sharing your journey as it has helped me so very much! I am not a March 2014 chemo gal but I wanted to get a feel for it. This group feels like my group I start TC tomorrow and actually had a fabulous day today here in Oregon! The weather was amazing so we went to the beach and I had a great escape from my reality!  I am nervous for whats to come but oddly calm tonight Wish me luck and ease and I will do the same for you all!  Below is me with my shorty hair cut and my hubby and 2 of my kiddos...my pre-chemo selfie!

CaliKiwi

Best of luck ChrissyLB!

ChrissyLB

Thank you Kiwilady!

alycallie

Thank you xrayalli! I haven't had any bad taste but have had the tummy pain and fatigue has been worse every week. I felt much better after 4th treatment when they lowered steroid from 10 mg to 4mg. I am also having a horrible time with acne/rash all over face, chest and back. My dr prescribed a lotion for it and it helps to dry up spots but is not preventing them!

yes the F is fluor something!  I haven't been icing at all and have had some tingling in my toes... hopefully neuropathy will not set in...

so thankful for this group!

good luck to everyone this week... I just finished taxol #7... 5 more to go!

Sinsin

Chrissy, cute pic! I live in Seattle so we we're out taking advantage of the great weather too! We went to the Tulip Festival!

Sinsin

I'm so sorry some of you are having to deal with migraines! That just sucks on top of everything else! I hope they can find something to help alleviate them for you! 

Sandydoc, don't feel bad. I am not a doc and I'm driving my poor oncologist nuts! She's says I'm just like a med student fresh out of school! LOL So at least you have good reason! I don't. Haha!

Sinsin

jmg, How is the tooth? I hope you're doing better!

maryland

I haven't posted here in quite awhile, I had my first round of Cytoxan/Taxotere on March 14 with fairly mild SE, a little nausea, a little fatigue, a little bone pain and on day 9 I broke out in what looked similar to acne on my scalp and face. Then I woke up on day 10 feeling really blue, I called my MO to ask about it and she told me the acne and the depression were from the steroid crash. we discussed the fact that I wasn't really sleeping and she put me on Trazadone which is an antidepressant that has a SE of sleepiness. Anyway, I'm getting my chemo every 3 weeks and now I'm on day 10 of the second round, this time was less nausea, no bone pain but now the bumps all over my scalp, I think worse than last time but thankfully so far not on my face. Then this morning I wake up just feeling really down in the dumps again, and just plain...blah…  I see alycalli is having the acne, anybody else getting these blues?

ChrissyLB

sinsin thank you! You look beautiful, tulips are my fave! 

Jenwith4kids

hi Genny, I think blues are par for the course, no?  I am definitely feeling them but I am very up and down.  Not sure I want to take an antidepressant, already taking so many other things, my xanax and ativan still do the trick for me (not together!) for sleep.

About the steroid crash, I crashed hard after my first treatment. .. textbook steroid crash.  For my second treatment my onc changed the dose.... Took 50% out of my infusion and effectively moved it to the end by adding two days of half a dose.  I came down much more gradually this time and felt hardly any steroid side effects - except for ravenous hunger and a very energy filled Saturday (infusion is on Thursday).  Maybe you can discuss that with your doc.

My sister doesn't take any oral steroids at all.  She gets them in her infusion (AC), but no additional. ... she was much more naseaus than I was for a longer period of time.  But her doc won't add steroids, she said they weaken the immune system too much.  Funny how the same protocols can be so different!

alycallie

genny 5775: I'm sorry you are having the acne and other side effects. I also have bumps/acne all over my head. I contributed it to being a reaction to being bald and wearing scarves etc. but it very well could related to the steroid. My sleep has been not so good also. I've been taking 10 mg of Melatonin and it has really helped me. When I wake up in the middle of the night I'm able to fall back to sleep more easily. 

sinsin, those tulips are gorgeous!

ChrissyLB

Well day 1 of chemo is over...6 hours later. Met with MO then had 3 sticks for my IV...ouch. Then labs, came back fine. Then premeds of dexamethasone and zofran, went fine didn't feel anything, then came the taxotere...nothing, then cytoxin...nothing. Man I tell ya it was more time consuming than anything and I was filled with such anxiety and nerves over this and now I think next time should be good! 1 down and just 3 to go. Now I have to admit I am a but nervous about what may come in the following days. I am also one who does not take meds of any sort so this is very hard for me to ingest all this "poison" then add more to counteract it's SE...Ugh! But I will do it and do it as I am instructed to in order to avoid as much of the SE as possible  SOf ar so chemo not so bad...so far  will post more as we go

Generation3

ChrissyLB,

I live in Oregon as well. The weather has been gorgeous the last few days. So glad you could get away to the beach before chemo.  I live outside of Eugene. Just to let you know day 1 and 2 were pretty easy for me but day 3,4 qnd 5 were pretty bad the first time. I got really dehydrated and weak. Before your tastebuds get bad make sure to drink plenty of fluids so you are well hydrated going into day 3. I did that after the second dose and have had a much easier time of it with only 1 and 1/2 bad days.

Wendy

ChrissyLB

Generation3

Thank you so much for the info! I am in the Portland area.  I will be drinking a ton of water and got info from folks here and the chemo nurse to flavor the water with cranberry or lemon to help with the taste buds, I do worry about the steroid crash? but the nurse says I am on the lowest dose of it so don't worry, but worry is my first name! I am consumed with anxiety over every little feeling right now and so worried how the night will go, but now I am better to see your post! Whew! Thanks again Wendy!

Chris

JoTro

Hi all,

I'm having spots break out on my head, mainly around the ears/neck area. Could be many things including a bit of sweat build up as with no hair there, any sweat must sit on the skin?? Plus I touch my head a lot(its fluffy and soft and weird)/could be transferring grime?

I too am having some major blues, this coincides with some challenging circumstances at home, work and how I feel about my future. Which without chemo I would probably struggle with so I'm probably being too hard on myself.

At work with my wig on I am really struggling.  I know the customers are taking an interest in my slightly odd look.  People who know my situation are generally nice / complimentary etc... but that's what they should be.  Customers are another story - they don't know me and it appears that it is amusing to them that "I may be wearing a wig"  I find it distracting to the job I am supposed to be doing and are seriously considering wearing a turban type wrap instead of my wig.  I know it really screams "cancer patient" but maybe then they would not spend any more time trying to guess?

I asked my boss if the company would be ok with it and he said yes (of course he would - discrimination  case against them if he said no) but the reaction of one colleague was not so positive.  She did not come out with it as such but her facial expressions and body language was not so positive.  Wow am I over sensitive or what!  Hell yes I am!

Also a bit down over not ever being able to have a glass of wine with the gusto that I used to possess. The time that this cancer thing is taking to go through and that my job is only guaranteed until the end of May.  I was hoping to be offered another contract with them but I have been feeling that I am now damaged goods and its too much hassle to deal with a sickie.

Meh, this sucks some what. (thanks for listening to my depressing shit)

Jo

Jenwith4kids

Jo, I'm sorry you are feeling so down!  I wonder if you should try to find a different wig? I had one that I hated, it just didn't feel right,  it didn't look like me.  I went to a few wig shops until I found someone who really new what she was doing.   My new wig, while still uncomfortable at least looks better. Someone complimented me on my highlights,  she had no idea it was a wig. It was only $40.  If comfort is really important - if you work a lot and need the wig for more than an hour or two at a time,  at one of the wig places I visited she put one on my head that I could barely feel.  It was  lace cap (maybe called single filament?).. so light and comfortable. But it was crazy expensive. ..she showed me stuff between $1800 and $2200.  Not worth it for me, but for someone who needs it every day? Maybe it's worth it then.

Chris ,  yay, one down!  Wendy is so right. .. hydrate!!  See my post to genny above about the steroids.  Another trick my chemo nurse gave me: my instructions for zofran are not to start until day 3...my nurse said to take it before bed as late as possible on day 2. She said that way it will be in my system already when the steroid wears off.  I found that helped.   For me, the first cycle was hard because of the unknowns.  Second cycle was so much easier when I knew what to expect.

Happy day everyone!  It's rainy here.... 

Jen

ChrissyLB

Jo, I am sorry you are feeling this way, I feel that the all to overused saying to "be positive" is not what needs to be said here.  F#$K EM! Don't let what you think others think of you take over! Rock your head scarves and wig, when someone seems to be staring at your wig, give it a tug and wink at them! LOL! Thal'll give them a shock! 

Jen, Thanks I will run that by the MO today, she has me taking the steroid with anti nausea in the morning today and tomorrow then no steroid on day 3, but maybe I will ask about taking a half tomorrow and day 3.  

Chris

CaliKiwi

Jo, sorry that things are so hard for you right now. I agree with what others have said, who cares what your coworker thinks, if wearing a scarf or wrap works for you, then do it! I find my wigs so uncomfortable I can't bear to wear them for very long. 

ChrissyLB

Hi there,

I was wondering who can add me to the Facebook group? I friended Dawn/Cancervixen but I do not know the name of the page.  I posted to her wall about this a few days ago, but she may not have seen it yet... 

Thanks,

Chris

JoTro

Thanks for your kind comments, was feeling really crap when I posted that... after a sleep and a chat with hubby I feel a bit better.  Putting things into perspective and what is really important is me getting better, getting through this and work is just work, my contract was never a permanent thing and with a month of radiation following my next two infusions, I have more important things to concentrate on!

I quite like my wig, it is starting to feel more comfortable but my point is more that I think wigs are a point of amusement with people we do not know.  There is something about them that does not look quite real.  Our supporters are accepting and protective but the general public are harsh.  My reality is that my job has been an escape from my problems until now.  I could go to work - do my job and my customers had no idea what I was going through. I cannot hide it any longer - hair loss is so obvious.

Planning to get away for a few days over Easter - that should be nice.

Hope you all have a great day and upcoming weekend with those do-able, minimal SE's

Jo

maryland

My whole scalp is broken out in nasty eruptions. I called the MO office and they said it's folliculitis from the steroids or chemo, not sure which. Anyway they called me in a script for doxycycline 2x/day. She said it should work pretty quickly. I'll let you know tomorrow how it's working, I had this same thing last cycle, but this time is worse. Both times 9-10 days after chemo. I've ordered a bunch of hats, I get hot flashes, the wig will be worn maybe to go out to dinner?? I don't know, I'm pretty comfortable in my hats.

Jodi040812

allycallie-  sorry I haven't gotten back yet!!  Yes I am at MD Anderson!  I get my chemo on Wednesdays.  I'll be there in June and July getting rads too!  I use Dr. Brewster and my radiologist is Dr. Strom.  Any questions just message me!!  

Taxol- was not hard for me at all.  First two upset tummy, after that nothing.  Taxol 9-12 my legs started to hurt when I climbed stairs .  Felt like I had a hard workout.  It went away two weeks after last taxol! 

FAC- well MD dropped the F part back in December.  They told me I was getting FAC, but the day of my first  dose the doctor said no F.  They said they found the F isn't needed now.  Just a heads up on that.  I have done well on AC too.  Tired and had mouth sores the first dose.  It was my fault because i ate too much movie popcorn;). This time I stayed away from overly salty things and no sores!  

Heading back next week for #15 and getting close to ringing the bell!  

jmg58

Hi, all....sounds like quite a few people feeling down this week, add me to the list although I don't have a huge reason why.  Went back to work yesterday and today (first time two days in a row since chemo started on 3/13).  Sinsin, thanks for asking:  so far, teeth are okay this time!  Anyway, I'm supposed to be on long-term disability and instead they used all my vacation time (even though an outside insurance company approved me for long-term disability).  I'm REALLY angry about this.  Last September when I started to feel ill, I had to cancel a trip to Europe and have only a year to spend that $$$ and my boyfriend, too. That adds up to like $3000 and now they used up over three weeks of vacation time I've saved.  At this point, if I get the all clear in July, I'm going to quit the damn job, pay for COBRA and GO ON VACATION.  I'm SO mad --they blatantly lied to me and there's no way they're supposed to be using my vacation time on disability, only on FMLA.  Their response, oh, well.  I was so looking forward to something good at the end of this and now they've taken that away.  Also told me I can't leave at 4:40 anymore, a select number of us (like 10 out of 70) have to stay until 5:00 because the whiny new kids right out of law school that we work for complained.  So now that 20 minutes makes me miss two trains and I'll actually get home AN HOUR later.  So, even though it was nice to feel well enough to go back to work, I hate them.  It's hard enough to make a full day without extending it an hour.

Sorry for rambling.  I'm really grouchy tonight when I should feel good.  The only way I'm going to feel good is to quit that damn job.  Anyway, Ive been going in for fluids like every 5 days and it's helped tremendously.  This time (2d infusion), I really didn't have any SE except big difficulty breathing for first 4-5 days (steroids?) and now I'm getting sore heels and blisters.  The nurse practioner told me to put creme vs. lotion on them and wear white socks covering all that at night.  So far I did it one night and it didn't help much; Ill try again tonight.  I also got the magic mouthwash this time instead of just the nystatin.  It tastes like *$@(), and my insurance didn't cover it, costs me $75.

Night all, I hope to be in a better mood for everyone's sake tomorrow.

Jenwith4kids

jmg, I don't think what they did at work is even legal... is it?  I wonder if they'd stand by it if you threatened some sort of legal action.  Do you have a friend or a relative who is an attorney who could write you a letter?  That really stinks...  

The bottoms of my feet have been feeling funny too...odd.   I'm getting a pedicure today - it's been months, but my chemo nurse said it's okay as long as they don't cut my cuticles so I am going to enjoy every minute of it!

take care everyone...

Jen

lgoldie

So many of you sound UP or doing well, which does me good.  I got some magic mouthwash...and it IS.  The mouth problems particularly drive me nutso but this stuff works.  I, too, am having short term, long term, insurance woes.  Do you find yourself having trouble concentrating enough to complete the paperwork?  Kinda scary.  I got fluids yesterday due to the neverending cycle of diarrhea/constipation even out.  Any advice?    So many of you look very young...umm not fair you should be in this battle. 

I am an only child, brother died in 2005.  My mom is in assisted living with migraines her whole life and a big stroke 16 years ago.  I take care of her (right?).  She was just in the hospital for a couple of days, I could not go in and my son did it all.  I find out she has a nodule in her lung which was not there in Dec.  Really?  Both of us?  I am overwhelmed.  She is only worried about me.  Ugh.  Life is hard sometimes.  I could use some encouragement. ;0