Starting Chemo May 2008

O.K., I am so with all of you on the weight-gain-in-the-belly thing.  Sooo...maybe it is chemo (at least partly) and not just us.  Yes, I look pregnant - again.  The only thing that is saving me is when I do go to work, I am forced to walk almost a mile (round trip to office and parking lot) and if I go out for lunch, it is more like a mile and a third.  This, however, also worries me about HFS with the Taxotere.   

And, even though my chemo was the week before, I think I am still recovering from that God-awful last one.  I was absolutely exhausted yesterday and very irritable with the girls by the end of the day.  I hate that part - knowing I am exhausted, mentally and physically, and not being able to control what comes out of my mouth.  At least I could tell them why I was Mommy Dearest. 

Part of my exhaustion could have been the all-day outing we had.  Morning at Home Depot with both girls participating in exhibitions (older one in gymnastics, younger one in dance) and it was HOT.  Then off to a pool party for older one's friend (good for the HOT), but I discovered I will not be walking barefoot much longer - my feet were and still are killing me this morning.  Needless to say, my crocs (cotton candy color) and my indoor spa-like slippers are on the way.  Also, despite applying 70 SPF (twice), I think I got sunburned. 

So sorry for the bone pain reports.  I remember that being miserable with my first Neupogen.  I will send my best pain relieving thoughts your way.  However, I know I can tolerate that better than continued queasiness - maybe then the pregnant look will subside.  Sue - you described my eating pattern to a tea!

Otter,

You're exactly right and have such a wonderful way of explaining things. I hate to be the one that has to make this decision. Basically, I'll follow doctor's orders. 

ok, Eddie and Chris, you are way more active than I could have been. Even shopping in the first few days after Taxol was out of the question for me. I was wiped as soon as the steroids left my system until day 7. I lived on 2 Advil every 4 hours without fail. My Doc would never give me anything stronger then Tylenol 3's which make me sleepy and nauseous so I would not take them. 

 I have the Desquamation on my feet - big nasty chunks of skin peel off everyday but that did not start until tx3, and I have the neuropathy. It is still pretty bad in my fingers on day 10 after tx#4.

 I had Neupagen until the end of the Taxol. Not sure why you guys don't. Even after my last chemo I had to have it for 5 days to prevent the neutropenia. 

 I only got mouth sores for 1 day on the 1st and 2nd tx.  

 One good thing, my fingernails turned to iron, and grew like crazy. They are starting to snap now, but I had a manicure in tx#2 and had lovely hands for a month! 

 I promise, it will be ok.

 Noelle  

OmG! you guys are Rock Stars! RUN???
I could barely climb stairs.

 My normal workout regiment when training was 6-8 workouts ( swimming, biking, running, pilates and weights) a week, and in the off season I go down to 2 or 3 and work retail 50 hours a week on my feet. I managed 4 or 5 total workouts in the whole 16 weeks of chemo. I did a lot of gardening, and rode my cruiser bike around town when I could, but other than that I was a total wimp. My legs killed me through the whole thing and I was always out of breath!

Now that my neupagen is done I get to start swimming again... tomorrow is my first day!  

Linda - Thanks for the Taxotere education.  I will make sure to stay on my Neupogen throughout and be extra vigilant, especially at work.  I wash my keys now!  Well, I did that before chemo occasionally.  All the walking I do already makes me a bit anxious about HFS, so I'm going to try to be careful - thus, the crocs and softy slippers for at home.  And, yes, desquamation does sound just lovely.  NOT.  (Bet Rock and Noelle and Otter feel the same...)

Noelle - I don't do some of the stuff because I feel like it, trust me.  And when I have chemooooo I am absolutely down for the count for at least 5-6 days.  (By the way, I will never be able to write or say just "chemo" again!).  I have been paying for my high activity the past couple of days, also.  I am grateful for the ability to do as much as I have been able, but (and I just said this to older dd today) just because they (or I) can't see an SE, doesn't mean it's not happening.  Like fatigue or wbc's.  I look o.k., to everyone and even myself most times, but I have to remember what my body is going through and not ask it to do too much.  It just sounds like your body spoke louder.  Enjoy your swimming!!

Rock - Good to see you back.  And glad that both DC and the feet are good!

Eddie and Sable - Still sending Motrin-like thoughts your way!

Who is on this week, girls?

Linda - I'm surprised on 2 counts. First that you can run, you must have a pair of really good running shoes. Second your percentage is different then from what I found.

On a page from the National Cancer Institute it states [About half of those taking docetaxel experience a side effect known as "hand-foot syndrome," the symptoms of which can range from relatively mild tingling and numbness to painful peeling and blistering of the skin.] For those that don't know docetaxel is taxotere. That tells me 50% a lot more then 3% or 6%. The link is at http://www.cancer.gov/clinicaltrials/results/frozen-glove0805

I attribute my bout with HFS after treatment #1 to the fact I did a lot of walking the first few days in a pair of loose fitting clogs which caused friction on my big toes. Rock said she jumped rope which would cause pressure on each landing. Somewhere in the back of my mind I think Otter said her shoes were too tight which would also cause pressure and explain why she got it on the part of her foot that she did. Otter correct me if I'm wrong, but then I'll just blame it on chemo brain, lol.  

Otter - Do last two sentences need correcting?

Cristine - Wednesday 30^th, my last T/C, yippee! Can someone do the Happy Dance for me so I can take it lightly on my feet? Started with HFS don't want to go out the same way.

Enjoy the day, Karin

Time for my daily whine......

I cannot imagine running at this point right now. My knees and lower legs hurt so bad that I cannot cross them cause the pressure about makes me pass out. Then to top things off I developed hives on my little bald head last nite. Doc told me to pop some benedryl and if they continue they will put me on steroids again... OYE! First time in my life I've had hives. Today my legs feel a tad better, it's my feet that are killing me. I think of rock everytime I walk now lol. I am hoping I am on the mend for this round. Would be nice to have taste buds again as well. I finally get zuchinni bread and I can't taste it!

Rock~welcome home!!!!!!!!!!

My vicodin is calling and well as a shower....

Cristine - I'm up on Wednesday for Taxol #3.

Linda - an Italian lake town sounds perfect!  I'll leave the light on for you!

Eddie -- I am so very sorry about the pain.  I wish I could "borrow" it for awhile.  Good for you to keep trying to move, though. You keep on keeping on in your wonderful Eddie fashion. (As if you would ever do otherwise...)

Christine - I have Taxol #2 on Wednesday.  Meet everyone at Lake Cuomo for a glass of wine?

Linda - That is amazing that you have been able to run most days, more amazing to at least get out for 30 minutes every day!  4 miles continuous running is incredible.  I tried 4.5 last Saturday (first time over 3 miles in two months) and had to stop about 5 times to catch my breath and let my legs ache.  Glad to know the hemoglobin is back up. 

Noelle - The irony is that I can barely climb stairs the rest of the day and it mandates a nap as well.  so rock star no, stubborn yes.  

Eddie & Sable - hoping each day finds that you are doing better on the taxol.

Rock - welcome home! 

I did the happy kick in the pool for all y'all in pain! I figured out that the last time I swam was just before my surgery in Feb. so today was a triumph!

I managed a veeeery slow 500metre swim stopping every 2 lengths to catch my breath. I passed most of the old people, but the pregnant one was faster than me. I could only manage mostly breast stroke ( can we find a new name for this one???) and some kicking drill My surgery arm is a bit of a hindrance in some strokes though and it will be sore tomorrow. 

 I was saying to the BF this week that the chemo pain from Taxol, was different from the pain from Neupagen, and they both are different from plain old -I overdid it at Pilates last night -muscle pain.The Chemo pains seem more poisonous to me... anyone else feel that?? I wonder what will happen moving forward...?

 The best parts were.... A) having the old old old people( who have been in that lane since b4 I was born and think they own the freakin' pool)  in the slow lane staring at me wondering why I was there with them. I was armed and ready with the snappy comeback if anyone made a crack at me. I moved over to the medium lane because the old people could not swim in a straight line!

B ) just b4 the session was over I realised I was going to have no choice but to shower and change in front of people after the swim. Do I warn them about the 8 inch scar b4 I take my suit off? Do I attempt to hide myself in the corner of the communal shower area? Do I just say screw it and shower and change like everything is normal? Well, once I remembered that I also have no pubic hair, I figured a combo of hiding and acting like everything is normal was the only choice. 

No one flinched thank goodness... but when the woman next to me in the shower started soaping up her big boobs and rubbing them round and round like a porn star in a shower scene (man, how dirty could her boobs be? I wondered) I reeeeaaally wanted to turn to her with my hands on my hips and yell SHOW OFF! and storm away.   

I didn't of course.  

 Rock, welcome back. I hope everyones pain, and everyones treatments are the best they can be.

Chemoooo!  Noelle 

Karin, I can think of a few reasons why the %'s we've seen for the incidence of HFS are so different.  First off, the article I was looking at was focused on the more severe cases (Grade 2 and up on a scale of 1-4).  I bet there are a lot more people with Grade 1.  I also wonder if maybe the "almost half" figure also included people with neuropathy (which, as I understand it, feels the same as early/mild HFS).

I think a more fundamental reason, though, is that once a treatment has been determined to be generally safe, there's not a ton of research done on the incidence of side effects.  That's not where the scientific laurels are, so - surprise, surprise - it doesn't get done.  (Exhibit A: Look at how little has been published about lymphedema in medical journals.)  So, we're told in very general terms what the potential side effects are, and assured that everyone is different (true), without having a very good sense of whether a given side effect is experienced by 10% or 50% or 90%.  We end up learning from one another instead.  

Noelle, your story about the show-off in the shower cracked me up!

And Rock . . . 9-point-whatever is still pretty freaking low.  I really hope your counts level off and start to rise.

Linda

Otter,

My apologies for saying I thought your HFS was because of tight shoes. During the time we first started talking about HFS could it be I remember someone else chiming in and blaming theirs on tight shoes?

Enjoy the day, Karin

Hurts too much to go barefoot for me right now.

I didn't have any pain except for the very first neulasta shot I was given... 4 tx ago. I was kinda expecting a little of what I had then but not intensified. Thank goodness it is starting to let up a tad. I may be out looking for crocs myself in the next few days... when I can walk again.

Women,

Cist. I advocated for myself today. Went in and they said, gotta' take more pix. I said, "Why? Are you gonna' send me for a biopsy if it looks suspicious?" They agreed they would do that. I said, "Really? In the middle of chemo?" I blew them off and told them I wanted to see the doc. I almost made a scene. Being emotional can work to one's advantage I guess. I was told, "You'll have to give up the mammogram room." I was, like, "OKAY!" I was shuffled off to Dolly in ultrasound who told me to lay there until the doc arrived. He did. He said, "We don't need to do more pix." He very gently ultra-sounded my poor remaining breast and, guess what? It was a cist. That was a fun exercise, but I am relieved. Celebrated by seeing Sex in the City. I never watched the show so I am sure some of it was lost on me, but good clothes, shoes and handbags....I must say. Meanwhile, the pain was pretty bad again today and, I realized at the movie, part of it was because, like an idiot, I didn't take anything. Went to cancer yoga and they all yelled at me and told me to take 800 mg of ibuprofen if I wasn't going to take vic or oxy. Came home and did that and, I don't want to jinx anything, but it does seem to have alleviated the pain. My onc called home tonight and told me he will work on why my wrists are hurting so bad as well as ankles. He is so nice. He also said we could cut back some on the steroids before the next chemo. And, he made me promise to take pain meds if I must as he explained that being in pain makes one use a lot of energy which makes one tired, blah, blah, blah. Okay, off for work tomorrow but will try to check in with you. Good luck to the Lake Cuomo crowd. I've been there. It is beautiful. May all your side effects be non-existent. One of the women in my yoga class sprouted hair this last week. It's so cute. Can't believe the boob rubber, Noelle. You could have sported your "brazilian wax" without having had the pain to go with it, but.... maybe not. Crocs are working, Sable. Go out right now and get a pair. Okay, get someone else to do that. They feel really good on. Good night and thanks for your support. It's been a very rough few days. Shlaff gut (sleep well in poorly written German).