Starting Chemo July 2012

SusanHG123

Boobzilla--thank you, thank you, thank you for your post. My next move will be to look for the book on amazon.

Ok--question. My hair status is nil EXCEPT a few stray eyebrows and lashes and my arms. Arm hair full and thriving. I am a nurse--probably should know the answer--but am clueless. A little trick from the chemo devil just to screw with our minds. Arm hair! Seriously.

Madelyn--many of us will be anxious to hear about your Taxol experience. I have 1 more AC and am so ready to finish it. Told someone today getting rid of the nausea, vomiting, taste or lack of and trading for joint pain and some pins and needles neuropathy---any day! Already have bone pain from the injection. 

Maybe next July our "July chemo group" should plan a few days at Camp Hilton someplace. or anyplace with hot and cold running maid service and a bar.  

SusanHG123

Chemo: Secrets to Thriving by Roxanne Brown.

Hope this is right. Downloading to my kindle now.  

emilybrooke

Thank you boobzilla for your uplifting post.

 This week, the good week,  I have done just that...trying to get back into a physical fitness routine with walking and light pilates, small errands, and had lunch with friends two women from work on the BC train as well. Seeing them was so helpful as one is 1.5 years out (36 yrs old) and the other is about 3 months ahead of me (45 years old). She just finished Taxol three weeks ago, has her exchange scheduled next month and returns to work on Tuesday. She is definintely a huge inspiration in my life - actually she has always been! I started my job as an English teacher ten years ago and she has been a mentor from the start which makes it even crazier that we are going through this together.

Life - thinking of you and look forward to hearing more about the illustrations.

Susan - I'm with you - a year from now when this is behind us we should meet up!

Madelyn - You've been such a big help thus far that I am also looking to you for info and guidance during the next step with Taxol.

I hope everyone is having a good day today. I'm heading out now for some more physical therapy

teeballmom

Well.... I've been so scared about Taxol next Weds, but I just got off the phone with an acupuncturist my oncologist referred me to for a free accupuncture and massage session next Friday and I'm feeling better about my SE fears.  His experience shows that accupuncture has helped many women with neuropathy (which is my biggest fear) and I'm just so glad I can have this experience to see if it will be any help with SE's from Taxol.  I'm so hesitant to believe that I will not experience any SE's like my ONC says.  I'm hoping, but still really hesitant.  

Madelyn:  I feel like I'm putting pressure on you, but I always look to you for your guidance also.  

Camp Hilton sounds wonderful!!!!

Sounds weird, but my hair is starting to grow.  I told my DH that if it starts to fall out again with Taxol, bring on the razor this time.  Is it just me, or is anyone else more afraid of losing their eyelashes and eyebrows (and I hate my eyebrows) than they were about losing their hair.  I've been o.k. with the hair, but I really don't want to lose my eyelashes.  My cancer center prescribes that eyelash grower that Brooke Shields promoted a while back, but I'm a little hesitant about that.  Maybe I should look into that further.  

Take care everyone!!!!

virginiab

I'm just home from chemo #3. 3 down; 3 more to go. I am on a 3 week schedule for chemo and told my doctor I wanted to avoid Neulasta if possible, or for as long as possible. My white cell counts continue to be good, so I'm pleased to have avoided Neulasta so far!

It was a quiet day in chemo-land. The lab nurse couldn't get a vein in my lower arm so we went to the inside of the elbow spot; she put in a hep-lock, so we were all set up for the chemo.Idon't have a port because I really like to avoid any medical procedures that aren't absolutely necessary--especially surgical procedures.

While we waited for lab results, my spouse and I worked on a jigsaw puzzle that was laid out on a table in the main reception area, then went up and saw the doc and got the okay for chemo. At chemo, we played a game of Scrabble, chatted with a few of the nurses, then wandered over to a puzzle table and worked on another puzzle. And then we were done. Easy.

I'm enjoying the belief/delusion that an easy chemo day means an easy post-chemo week....

_Ann_

Yes teeballmom, I'm more bothered about the brow/lash loss than the head hair.  My brows are thinned already but I'm still able to wear mascara.  I'm going to be kicking and screaming if/when the lashes go.  I did find a tutorial on faking the look of eyelashes with liquid eyeliner (paint it on in a slightly winged pattern) and I may try that.  The same tutorial advised that false lashes don't work well without real lashes to stick to.

I'm glad you're feeling more hopeful about managing Taxol SE's.  I'm just trying not to think that far ahead yet.  Still have one more AC to go. 

Itsalltemporary

SusanHG123 - thank you for a good giggle! Your comment about arm hair was very funny!

teeballmom- totally agree- I am much more freaked out about the eyebrow and eyelash loss than the hair loss. I feel like I can hide the hair loss with a wig, but the eyelash and eyebrow loss is harder. I have been through 3 rounds of TC. Having thinning and no new growth of eyebrows and lashes - but still have retained some. At the place I got my wig, they had some great eyebrow stuff. It is a powder but almost goes on like a liner (but not harsh like a liner). I have been using it and will probably use it even after chemo is over.

 I know this sounds strange, but is anyone experiencing great skin? Not sure how my body is doing this given all of the toxins being pumped in, but the skin on my face looks smoother and more even toned than it has in years! Not sure if I am just better hydrated than I have been or what? Who knew that with all those dollars spent on facials, and scrubs, the thing that would work the best is chemo!

virginiab

My skin is looking splotchy. I went in search of a foundation that provides better coverage. For those of you whose skin has improved -- how cool is that?

My hair loss is also a bit splotchy. I notice that one of my sideburns is still growing the pre-chemo hair, while the other is quite bare. But it seems like most of the original stubble is gone and in its place is short, sparse, feathery gray hair. Brows and lashes are sufficient for now, but I have been doing a little practicing for a time when I need to use makeup to replace the missing hairs. I like the brow powder and have used it in the past because my brows just kind of disappear, especially from a distance, so I used the brow powder when I was making a presentation.I'm trying to rediscover the right touch with the powder.

SusanHG123

Read the intro of the thriving with chemo book--where she was diagnosed right before her birthday.

My birthday this year was spent having 10 core biopsies, enough blood drawn to create another human (and they wonder why my H&H is down to 9 and 27), ECG, and breast MRI. Gotta have a sense of humor to get through.

My eyebrows and lashes are getting more and more sparse. Using a brush and powder for the brows--for a bit of filler. I will miss my lashes. Have always been long and full.

For those wearing scarves. Found 2 great ones today @ Hobby Lobby. Full price $12.99 but had a couple of 40% off coupons.  

Today was another good day. 2 in a row. My 21 year old daughter is coming home from college again this weekend. Told her I am good--do not need a babysitter. Think she needs to see me in a good place. Last 2 times was w/end after chemo. Am hoping some of her friends from other universities will be home also--love having "The Herd" at my house. I can even do bald with them.

Love and hugs to each. 

roadwarrior28

Itsalltemporary - I think my skin looks better too. At least there's one good SE!



Heading for my fourth AC tomorrow and after that it's on to Taxol. My hair started growing back after the 3rd treatment and eyebrows and lashes are still here. I'm doing surprisingly OK so hope that continues

_Ann_

Itsalltemporary, I noticed my acne is improved.  I thought it might be due to not having long hair touching my face and bedding and transferring oil and bacteria to my skin.  Or maybe oil production is just shut down, like hair production is shut down.

SusanHG, I'm so glad you're having some good days.  You deserve them!   

PaEaglesFan

Has anyone else found it strange to see photos of themselves with hair after getting use to the bald look? And has anyone's DH shaved their head along with you and decided he liked the look and was going to keep it?  Mine did.  He's become obsessed with his bald head.

Yesterday morning I woke up around 5am to find him "petting" my head in his sleep.  I very calmly asked "Hon, wth are you doing?"  He mumbled something and stopped.  I figure he either mistook me for his own head and was thinking "Dang, I need to shave!" or he mistook me for the chihuahua that sleeps between us.  Not sure which one I'd rather it be lol

I'm still laughing about it today. 

_Ann_

PAEaglesFan, my guess is he thought your head was the chihuahua.  The dog is probably softer than his own stubbly bald head, so take that as a compliment. :-)

No, my DH did not do a sympathy cut.  I told him I didn't want him to and he was quite relieved.  We both had hair past our waists.  We were the long hair twins!  Mine had been un-cut for 5 years.  It bothers me to see the old pictures of my long hair since becoming bald.  However I was very happy with the one inch pixie cut I wore for two weeks between the first infusion and the time it fell out, and I am seriously considering keeping it ultra-short for a while after it comes back, and perhaps dying it some bright colors.  So DH and I won't be hair twins again for a loooong time.

Lifeonitsside

PAeaglesfan - My boyfriend seems to love rubbing my stubbly head. He'll just reach over and give me a quick rub. Even as we were falling asleep the other night, he wrapped his hand around the back of my head and rubbed it a bit before falling asleep. Kinda sweet.

Madelyn

wow..Camp Hilton sounds like a great idea...

Sorry I was "absent" for a while my daughter came down with Strep Throat and it was like "code blue" in my house.  I have tried to be so good --washing hands, using shirt to open public doors and now this!  I called my onc and I had to take a  Z-pack of antibotics just to be safe.  But of course the antibotics do a number on the stomach--ahh good times.  

Tellballmom and I must be kindred spirits.  I too was looking into acupuncture--as a way to counteract any joint/bone pain!  But my onc didn't give me a coupon for it like some people Before all of this I was such a believer in vitamins and supplements.  I love reading and learning about the newest and best....I just read about turkey Tail(help immune system) and glutamate(great for stomach) today....but with my taste buds the only thing that sounds good is Taco Bell and Yoo-hoos.  Go figure...

My sense of smell is crazy.  I could moonlight as a bomb sniffing dog.  Don't know why, but some plastics just seem to smell horrible.

My complexion is gettting better...I used to have clogged pores-those seem to have "cleared"  Maybe it is the chemo, I was trying to convince myself it was all the chicken bean burritos from Taco Bell.

I've tried to read all the discussion posts for TAXOL, and it seems to be really doable.  Everyone seems to have VERY different experiences with additional hair falling out and when it returns.  And yes--I'm holding on to each eyebrow hair--they have thinned but the pencil with brush on the end does fill in nicely! 

Taxol bloggers seem to really hate the Benadryl that they get with Taxol.  I'm thinking I will definitely have someone drive me since I know how that effects me--just makes me very tried.  No biggie though.   

People have mentioned a couple of different things for nails...soaking in olive oil a couple of minutes/per day, icing during tx, I'm going to use Sally Hansen "Hard As Nails"  because the onc nurse recommended it.  Some people said they lost toe nails, one woman said it might be do to the fact she walks 3 miles/day.  They do grow back.  

As far as the neuropathy is concerned, the whole reason why we are on a weekly basis is so we can communicate with our doctors and they can adjust our tx.  It seemed 50-50 with the women on the other blog who had pain and those that didn't.  Again ...a little joint pain sounds sooooo much better than gagging on my own metal tasting saliva.  

My concern about Taxol is--Will I have a down day(s) and how long will it last. When doing this weekly we don't leave ourselves much time to bounce back if we are down for more than one day.   It seems to be Day 3 is the "down" day when the steroids run out but can last one to three days depending on the individual experience.   

I asked my onc nurses about Taxol and will it be cumulative.  They told me that if any side effects show up it will be around tx 5-6.  Wow..do I actually get a break here?  Sounds good to me. My first Taxol is Wednesday...I will let you know how it goes!

Please everyone have a safe and relaxing Labor Day Holiday, hugs to all! 

xoxo 

Madelyn 

Madelyn

SusanHG123- first book I read about chemo was "Chemo:Secrets to Thriving" -- cute book with illustrations.  A fast read too!

EmilyBrooke- isn't it amazing how being with old friends can energize and recharge you.  I'm glad you got out and had a chance to do that.  I hope the physical theraphy is going well too!

  

Also, Glutamine is for neuropathy not for stomach issues...my bad! 

_Ann_

Madelyn, thank you so much for sharing your research about Taxol.  

P.S. I really had to laugh at the phrase "gagging on my own metal tasting saliva" and your talk of Taco Bell.  I thought I'd fared better than others on the tastebud issue, but just recently the surface of my tongue has gone numb and all I want to eat is ice cream, cheetos, and chocolate Boost. 

virginiab

Odd thought the day after chemo....

With my face all red today from the steriods, I looked in the mirror and tried to figure out what I looked like. I think the red on my face makes me look like one of Santa's elves gone rogue....

 My other odd thought today (as my taste buds faded away in late afternoon) was that when you settle into the chemo routine, it's kind of like a weird hobby. lots of hobbies training for races, landscaping,home improvement) have predictable physical challenges, some periods of relative calm in the middle, then more chaos, before the thing is resolved at the end.  Thinking of it as an odd hobby makes it seem moremanageable somehow...at least it does today.

Hugs to all. 

_Ann_

Virginab, I like the weird hobby idea.  It makes it seem like something we've chosen rather than something forced onto us.  Speaking of elves, one of the hats I ordered from zappos was a bright green beanie.  I put it on and all I could think of was the guy in the movie Elf.  I sent that one back. :-)

roadwarrior28

For gals worrying about lashes and eyebrows - my nurse suggested finding a fortifying treatment and using it twice a day. I found one from a brand called Osmosis and will give it a try

roadwarrior28

Some people mentioned Glytamine - my onc said in studies they did at Cleveland Clinic people who took Glutamine actually had higher rates of neuropathy. But it seemed to help if the neuropathy was already there. So she told me not to take it unless I start feeling any symptoms - go figure

emilybrooke

I agree with the eyebrow/eyelash loss. I find it upseting because yo can cover your head with a wig/scarf. You cannot hide the eyebrows. I went to a class while I was in the hospital Look Good Feel Better and they had make-up artists help you with your beauty regiment. I hope I remember what they taught me! Roadwarrior thank you for the tip on the Osmosis product. I will be looking into to it.

My DH wanted to shave his head with me but I asked him not to. I think I said it before, one baldy in the house is enough for me. Plus, his brother and my dad went ahead and shaved their heads to support me.

Madelyn thank you once again for posting so much information on Taxol. I will have 4 rounds of Taxol every other week with Herceptin each week during my Taxol time. Then I will have Herceptin every three weeks for one year.

My friend that just finished Taxol had a difficult time with the bone pain but said the side effects she experienced on AC went away during the Taxol treatment. As far as the down time, she was down about three days because of the pain but she did not experience the foggy feeling AC brings.

My complexion is terrible! Some days I have welt-like pimples on my face. I am looking for a natural remedy but I really feel like between the steroids and the hormones there's no helping this right now =(

virginiab

Thanks to everyone who gave me beverage suggetions a couple of weeks ago. I was just at the end of the foul-tasting portion of the game, so didn't get to try all of them out at the time, but I did stock up on things you suggested and am now starting to drink them. Right now I'm working on something that is about 2/3 sparkling water (made with my Soda Stream maker) and 1/3 light cranberry juice. This is unoffensive and (dare I say it?) almost tasty!

I did try grape juice/sparking water combo at the end of my last cycle and that worked well for me. I'm going to try lemon juice/sparkling water when I tire of the sweet stuff. Palin hot tea is also pretty good, and plain iced tea is not bad for me.

I read something about 20 minutes of brisk walking helping you generate white blood cells, so I'm trying to do better with exercise during the not-so-great portion of the cycle. I managed 5 minutes on the exercise bike this morning; hoping to do more later, but I know the mornings are usually best for me during this part of the cycle, so I'm trying to do my best here in the mornings.

I noticed last night that I have no hair below my neck anymore. I can see the first visible gap in my eyelashes. It's time to review that great video from the woman with permanent hair loss....

_Ann_

Hi ladies, I'm really skeptical that any fortifying treatment is going to help the lash/brow issue.  If the chemo has killed the cells in the hair follicles, those hairs are going to come out eventually.  How is any external treatment supposed to affect that?  I don't like to see people waste their money and their hopes on products that have little chance of doing what they claim they'll do.

I'm really struggling with food lately.  I was really into a low fat plant-based diet before BC, and now I'm almost completely averse to veggies and whole grains.  They just taste awful and I end up throwing out half every time I try.  The only food that's appealing is junk.  Had pizza for dinner last night, and for breakfast I finally gave up on making (and throwing out) oatmeal and had poptarts and seasoned dry-roasted peanuts.  I'm even tired of diluted juice and drinking diluted ginger ale instead.  So much sugar and fat, blech.  I can't decide whether to keep trying to eat real food or just give in and hope the chocolate Boost is going to give me enough nutrition on top of the junk.  Has anyone figured out good food that's still tasty?

sduch1

Hi, I don't normally post but I am currently in my 3rd round of AC and will get my last treatment next Friday. I just wanted to chime in regarding Taxol since I had Taxol and Herceptin first, prior to surgery. It is actually hard for me to remember at this point (bc of the AC!) but at this point I would rather be on Taxol than AC if that helps at all. I reacted at the first infusion to the steroids and Benadryl, it actually made me anxious and I had a panic attack but I think it was bc I was newly diagnosed and petrified. From that point on I always took an Ativan and once they realized I wasn't going to have an allergic reaction, they cut the doses and gave them orally as opposed to through IV. But I was definitely drowsy during each infusion. I went in in Fridays and usually had energy over the weekend, then Monday and Tuesday I would feel tired but not down and completely fatigued like AC. I still worked, drove myself to work, etc. Wednesday I felt a little better and by Thursday I felt normal but then had to go back in Friday. It is a short cycle being weekly so you don't get the week of feeling better/normal like AC but I found it more bearable than the down cycle of AC. I worked, exercised, ate (for the most part) whatever I wanted which was a mostly vegan diet. As far as side effects, I did not get neuropathy---I had very mild tingling sensations every once in a great while but they are completely gone ever since I stopped. I did not have bone or joint pain. My hair thinned to the point of barely having any hair and having to shave it. I lost my eyelashes and eyebrows at the very end. All of that has grown back now but my hair is starting to fall out of my head as of today due to AC. Most of my issues were gastrointestinal---I had mouth soreness, I did get a yeast infection, and my Hemorrhoids from recent childbirth were aggravated. There were a few days where I would get flu like symptoms and feel sick and have a very low fever (not high enough to see the doctor) but it would only last a day. I did see an acupuncturist and went to yoga. Mentally I think it was easier than AC bc there isn't that chemo fog and extreme fatigue that I am experiencing now but I will say that after stopping Taxol and Herceptin after a few weeks (leading up to surgery) I felt great and back to normal and realized how much it also impacted me mentally. Hope that helps....also I was told by my oncologist that most people tolerate the weekly Taxol really well. It wasn't easy but I was always more scared of AC bc of the low blood counts, etc. With Taxol, my blood counts were always within normal range. If I remember anything else, I will post it.

sduch1

Oh, and I hate that on AC nothing tastes good and all I crave is junk food. I am pretty much having aversions to everything or it just tastes bland. We signed up for an organic vegetable delivery every other week and they are all just going to waste at this point. Blagh....

_Ann_

sduch1, thanks for the Taxol report.  We're having the same food experience from AC, so maybe I'll have the same relatively easy time you had with Taxol.  :-) 

SusanHG123

Sudch1-thank you for your post and and infor on Taxol. Taxol sounds better than the 8th circle of hell and AC/AC side-effects. 

Right now--Yasso blueberry frozen yogurt bars and Passionfruit tea/lemonade from Starbucks. Pricey for sure. Bought the passionfruit tea bags today and going to try to copy. Of course--but the time i perfect the mix--will have tossed it a few times--and trying to find something else.  

My skin is a wreck. My hands, arms, and back look like I have leprosy. Started with my hands. Oncologist had me use topical steroids. Now has spread to arms, began @ upper back yesterday--all the way down now. Little blisters form, itching, peeling. Sking on my face is peeling and itchy--despite what i use.

Would so like a nice aged single malt scotch over a bit of ice. Smell makes me gag.

Love to each.

susan 

Lifeonitsside

I'm so grateful my SE's have been manageable. My taste buds are off a bit but my appetite is good. Nausea and exhaustion are my biggest issues so I'll take that considering what else is out there.



Sending love to all of you struggling right now!

stride

It sounds like a lot of people here are starting Taxol soon. A few people on this discussion board and another have mentioned concerns about Benadryl injections. I'm getting Benadryl injections with my chemo, which is TAC. I really don't mind it. It is relaxing and puts me to sleep right away, and that's kind of a blessing in the chemo chair. But between the Benadryl and the Ativan, I'm a couch potato for the first four days after chemo. I really admire those of you who keep up with your normal routines after chemo. I have been missing about a week of work with each treatment.

I am extremely grateful to have had virtually no bone pain with the Neulasta. I hope the same for everyone starting Taxol.

I'd love to hear from anyone doing TAC. I had my fourth treatment last Wednesday, two more to go. I am beginning to have some muscle weakness in my thighs, but oddly enough I feel it more when I am relaxing than when I am exercising. The chemo knocks me back too much to do anything strenuous, but I walk every day and do some light calisthenics. My worst symptoms are digestive, but I started taking Prilosec and they have gotten more manageable.