January 2013 chemo group

Hello, all. I'm a newbie poster, but I confess -- I've been lurking here since I got my chemo start date fixed-- almost a month ago. I started checking this board in order to try to get a sense of what chemo was really like from following the experiences of women who were just ahead of me. But, with two treatments behind me now and four chemos ahead, I've started coming back for the good laughs!

So far, so good: biggest SE's like many of you have been body aches from Neulasta and constipation week one. As  far as the body aches go, after a hellish, sleepless couple of days during my first cycle, I got a steroid pack and took a daily claritin starting the day before my second shot. I still had aches, but was able to sleep and take no pain meds.  I'm going to stick with that plan for next time.

I wanted to weigh in on the headcovering question, since losing my hair's the main part of chemo that's been struggle for me. ( I have to laugh right now, because as I write this there's a 5 minute commercial on TV for  product called "no-no hair." They are showing all these people laboring to rid their legs, faces, chests of every trace of hair. Guess what-- I've got a no-no hair plan with a 100% guarantee!) Anyway, my hair started falling out during week three of my first chemo cycle, and I got shaved right after my second treatment. I got a wig that looks a lot like my hair, and I wear it a lot. I spend a bunch of time each day debating what I'm gonna do with  my head-- well at least more time than I ever spent fixing my real hair (which was like two minutes)! The fact is I'm getting used to my bald self at home, but my wig is my most comfortable option for going out. My wig has a "lace top," which is pretty comfortable because it lets my head breathe. My favorite look is the wig plus a hat (makes the wig less poofy) but that gets pretty hot. I have tons of hats which I wear around the house, but when I go out, I usually put the wig on. So, reading this thread, I started thinking about why. 

I live in a mid-sized city and know lots of people here, and I think the wig helps me keep control over who knows about my cancer/chemo and how many conversations I'm forced to have about it. I created a club (I have two little girls who love secret clubs) of people I show my bald head to, and if you see me bald, it means I love you. That is working OK for me now, and then when the weather warms up and I get more used to this or sick of my wig, we'll see. But I thought I'd throw this out as another perspective for women who are trying to figure out what will work for them.

I also wondered whether any of you have itchy bumps on your heads? I wore hats all weekend and developed a rash on my head. I've been washing my head and moisturizing, but no change. I called my oncologist today and they recommend hyrocortisone or benadryl cream. Anybody know anything soothing for a bumpy bald head?

Cheers, all, and thanks for the great conversation. 

Hello, all. I'm a newbie poster, but I confess -- I've been lurking here since I got my chemo start date fixed-- almost a month ago. I started checking this board in order to try to get a sense of what chemo was really like from following the experiences of women who were just ahead of me. But, with two treatments behind me now and four chemos ahead, I've started coming back for the good laughs!

So far, so good: biggest SE's like many of you have been body aches from Neulasta and constipation week one. As  far as the body aches go, after a hellish, sleepless couple of days during my first cycle, I got a steroid pack and took a daily claritin starting the day before my second shot. I still had aches, but was able to sleep and take no pain meds.  I'm going to stick with that plan for next time.

I wanted to weigh in on the headcovering question, since losing my hair's the main part of chemo that's been struggle for me. ( I have to laugh right now, because as I write this there's a 5 minute commercial on TV for  product called "no-no hair." They are showing all these people laboring to rid their legs, faces, chests of every trace of hair. Guess what-- I've got a no-no hair plan with a 100% guarantee!) Anyway, my hair started falling out during week three of my first chemo cycle, and I got shaved right after my second treatment. I got a wig that looks a lot like my hair, and I wear it a lot. I spend a bunch of time each day debating what I'm gonna do with  my head-- well at least more time than I ever spent fixing my real hair (which was like two minutes)! The fact is I'm getting used to my bald self at home, but my wig is my most comfortable option for going out. My wig has a "lace top," which is pretty comfortable because it lets my head breathe. My favorite look is the wig plus a hat (makes the wig less poofy) but that gets pretty hot. I have tons of hats which I wear around the house, but when I go out, I usually put the wig on. So, reading this thread, I started thinking about why. 

I live in a mid-sized city and know lots of people here, and I think the wig helps me keep control over who knows about my cancer/chemo and how many conversations I'm forced to have about it. I created a club (I have two little girls who love secret clubs) of people I show my bald head to, and if you see me bald, it means I love you. That is working OK for me now, and then when the weather warms up and I get more used to this or sick of my wig, we'll see. But I thought I'd throw this out as another perspective for women who are trying to figure out what will work for them.

I also wondered whether any of you have itchy bumps on your heads? I wore hats all weekend and developed a rash on my head. I've been washing my head and moisturizing, but no change. I called my oncologist today and they recommend hyrocortisone or benadryl cream. Anybody know anything soothing for a bumpy bald head?

Cheers, all, and thanks for the great conversation. 

cancernoway...

"drop ass" - LOL!  

My sixth grade teacher once said she would go home at night and cry if she didn't learn something new each and every day.  

I will not have to cry tonight as I now know a brand new expression! 

Nancy, I just sent you a friend request on Facebook (Leslie)...I wanted to send a message, but Facebook is trying to charge me $1 to send a message to someone I'm not connected to.  I refuse to pay for anything on Facebook!

Martha, I used to feel that way after giving birth (25 years ago) and I have had that feeling at various other times in my life - fortunately, not since BC.  I once heard that there's something called sundowning but it's connected more with older people in nursing homes but that's what I equated it to:  feeling restless, down, depressed after the sun went down. 

Lee



I love every one of your posts. You always have so much information and you are so full of knowledge.

You care about everyone on here and I even go to Facebook to see all your posts. You always cheer me up!!!



Gina

LOL!!! thanks Paula (volvo) and cancernoway (drop ass)...I always appreciate the laughs I can find here



Cancernoway, seeing your bike reminded me of your post about collecting...do you ever watch American Pickers? I've become addicted to this recently...I don't collect anything but I'm obsessed with watching these 2 guys dig up great finds.



LeeA, I echo chgogemini's comments...you are our resident font of information and I so appreciate all of the wonderful, useful and inspirational info you gift us with! Thank you!!



Nicmac, welcome! "come for the tips, stay for the laughs!". That could be our club motto so glad you have come out of th shadows to share your journey with us.

chgogemini and hope49, 

Thanks so much for you kind comments but I feel like I'm the one getting all the information from everyone else and I have proof of that in the form of a desktop folder overflowing with screenshots with advice, info, tips, etc.

I mentioned this on the Facebook page but I don't think I've brought it up on this thread; anyway, as I was being fitted for my wig I met an amazing woman who had BC 36 years ago (she was buying a wig for fun - not for chemotherapy).  She said back then NO ONE talked about this and of course, the internet (as it is now) didn't exist back then.  Can you imagine how hard it would have been back then?  

We are truly stronger because of each other! 

...so i just got cleared for chemo #2...great counts (yeah Neulasta)...bring on the AC.  They agreed to slow down my drip this time to avoid the sinus headache and seemed kinda surprised that i had minimal SE's the first time around.  Great nurse (not) says to me, "I don't mean to burst your bubble but it does get harder the further along you get".  Thanks Nurse Bitchy Pants...screw you.  I'm gonna expect the same SE's i had the last time and you can piss up a rope, lady!  Way to go on the encouragement...it is not nice to slap the onco nurse upside the head so i refrained...but the thought so crossed my mind.  The "onco associate" doc was somewhat more positive but warned me to take it easy and trust my body...geez...why does everyone keep telling me to take it easy?  I'm not dead here...and if i'm tired i'll take a nap.  Stop calling me sick and leave me be...give me my drugs and send me on my merry way.  I will zoooooom through this shit like i do everything else...ok...maybe not zoom but i'm gonna at least hover...so stop trying to make me a "patient".  I am fine.  I will continue to be fine.  This, too, shall pass and i'm gonna steamroll through to the best of my ability...stupid medical professionals AND insurgents best get the hell out my way!!!  Grrrrrr!!!  

Shannon- My Cytoxan was slowed to 1 1/2 hour. No sinus issues this time. Good luck today and go kick some cancer cells right in the ass!!!!

Treatment is actually TOMORROW...today was just the "yeah, you're healthy enough for us to throw the chemicals your way" pre-chemo bloodwork and semi-demoralizing "interview" day.  I belly up tomorrow at 1pm...bring on the WOMD (weapons of mass destruction- insurgents HATE them!!!)

Hi Melibt:

I had a fever for 5 days straight in the afternoon, after the Nuelastra shot, not high 99 point something . Two times at 2 separate nights it went to 100.5F. My doctor wanted to give me antibiotics which I told him to hold off unless my fever went up again. It never it, and no more fever after 5 days.

In fact on my 9th day after chemo I felt good, and am still feeling good (12th day).

Jean

Shannon - don't let that nurse talk you into anything!  Your journey is about YOU and not about any other patients they have worked with.  I have had minimal SEs (knock wood, sign of the cross) and one nurse rather than saying 'that's great' told me they'll probably get worse each time...so I have made it my mission to prove her wrong.  BTW, my MO who is wonderful, said the first round is very predictive of how the rest will go...while I know from some of our club members here that's not always the case, I found that very encouraging and have just set my mind to success.  I'll deal with anything less than that when the time comes!!!  You'll do great tomorrow!

Paula - that cracked me up! I laughed so hard my kid is begging me to tell him what's so funny!!



Nicmac - love the secret club! How old are your girls?



Shannon - I share the anger about the biatch trying to sneak a peek. But I gotta say...that's all you said? I picture you unloading with some funny- ass comments. I'm a tad disappointed. :-) kidding! In seriousness, your post about bitchy nurse helped me get my attitude right. My husband said something about me being "sick" today. I said I'm not sick.. I'm healthy..the cancer is gone..I'm torturing my body with chemo so We could have a long happy life together effer.



Hope49 - I love the show American Pickers!



So today is day 10 (I guess, if I counted right) and I feel fantastic. I'm not sure I feel "normal," but I'll take it.



Regarding the afternoon blues, I get those too. I think it does have to do with the setting sun and missed, unknown or known opportunities. For me, anyway.

Hey all,

Going for chemo tx #3 tomorrow, gonna ask that they slow my infusions down and maybe skip the aloxi. Last treatment I had the headache/neckache from hell that was at full throttle for 3 days and minimal for 2 more. Haven't had problems with steroids before breast cancer so gonna take others advice about the speed of the infusions. Also, over 30% of patients experience the two primary SEs of aloxi and that is headache and constipation and I seem to have both. I never was a headache person prior to chemo. Keep me in your thoughts and prayers for uneventful day and minimal SEs.

Hugs and love to all, Sheryl