Starting chemo January 2009?

sweetpam - i hear you about info overload, but knowledge is power. if i hadn't paid extremely close attention to everything my doctor prescribed and verified every single ingredient and dosage for my chemo, one of the nurses would have given me the WRONG DRUG. i think now more than ever we need to be on top of every single thing pertaining to our treatments. doctors and nurses are human and make huge mistakes. i don't want to contribute to that! i've been scared to death by things i read about other people's experiences that didn't happen to me, but i'm the kind of person who wants to know what i might be up against. i do not like surprises!  anyway, staying on top of every single thing has been helpful to me--it's made me feel more in control, and it definitely kept that nurse from giving me the wrong drug.

the 20mg of decadron i got in the IV with my first taxol treatment yesterday certainly did its job. i couldn't get to sleep until 4 a.m. this morning.  but i cannot believe how very different i feel today compared to the day after AC, where i felt like total crap. i feel completely normal and really great the day after taxol #1! i will get the neulasta shot this afternoon, which usually makes me feel lousy for a couple of days.

good wishes for everyone this week!

Renrel - well said - you are a Buddhist at heart. 

Sometimes (like now as we all deal with this bc beast) it is tough to find compassion for some people - but their experience is real to them.   Am grateful for so many things  --   especially for not being them - not having their gene pool or the environment that shaped them - it would be an awful way to live life. 

Say more about the "healing garden". 

Kathy

Hi There,

                    I am now in the chemo room and my restless legs are dringin me crazyy!!   Holtbolt I soooooooooooooo   agree with you, My sister from NH is in tucson for 2 week visiting her daughter who lives there, her son and wife and 2 year old are flying in on Saturday , she made the plans they are going to go see the grand canyon.....but the forcast calls for snow and rain..........I said then go to calif...................

        The min concern of my story is on Friday she may come by and spend a few hours with me, I said oh should I make dinner or do we want to go out, she says, well I think we will want to leave early to avoid the traffic??????!!!!!!!!!!

               So...............................I know my husband just may said something not tooo nice, she wanted me to take the day off so I said when will you be at my house , she said properly around 1-2, so I am working till 12...........................So I have decided that if sheis only giving 2-3 visit I may just go to the door BALD, and then I will have the worse S?E day ever in front of her just to make her feel BAD?????????????????

                Who is with me what should I do, or I also thought I would say gee if you are driving 3 hours out of your way just for 2 hours, then just dont come!!

              Ok so I am venting and trying to forget I have wires coming out of my chest for another 3 hours.............................I offered to have them sleep over on saturday which happens to be my day off......and I do realize some people just don't do well sleeping over but they will be sleeping over the daughters house in tucson.

                    I have a different family we never talk during the year but since I had my daughter I have gone home to Mass every year so that Chelsea will know everyone there, and the minuete we see each other it is like we have always been there.

                       Well chelsea will be home this friday night told her NO to any spring brecks partys, next year the NO may not work.

                      So i do not want to get my feelings hurt, I wear my heart on my sleeve part of the reason I have never made very close friends they just seem to always disapoint you!!

         Ok so you are learning way to much about me.....................so for my finalee should I fall on the floor and jerk around?????? I really like that one. Back to my chair talk to you all tomorrow!!! Jewels ROCK!!! Pamela  I hope I made you laugh it is good for the soul!!

kt57- They have this garden on the 8th floor of the outpatient building at my hospital (MGH).  There is both indoor and outdoor space on the corner of the floor.  It is a space for quiet contemplation. No cell phones or eatting.  The floor is a earth color tile of some sort, very large tiles.  The inside has ferns and peace lillies and wooden chairs with earthly tone cushions.  There is a big pot with small healing stones to take with you.  Small smooth stones that fit in your hand.  Outside there are small trees, some small statues a broken stone path, grasses. I forget what else and a wonderly view of the charles river, boston and cambridge.  There is a glass wall so that you can't jump or fall over but it really disappears when you are looking at it.  It is a really wonderful space to sit and heal, body, heart and sole.  They have a little book to write a note in.  Lots of notes thanking god or asking for healing. I wrote a thank you today to those who had the vision to start turning this hospital into a true healing space.  A place that does more than just kill disease, but which heals human beings. 

I am really dragging today.  I did not accomplish anything of substance today.  I got DS to school.  I spent a few minutes enjoying the garden and talking to a friend in the resource room.  I spoke to someone in HR but not the person I really need to talk to.  Both HR people are warning me to watch myself with the LTD people.   That they are known for twisting words and delaying payments ect.  To make sure I get firm commitments from them.  If they said middle of next week ask if that mean's I will have X from them on the 14th.  I don't have the energy for this right now.  The best part of the was stopping my my office for a few minutes and talking to woman who had brain surgury the same time I was having breast surgury. We both are doing the wig thing and the remember to let your body rest thing.  We had a good talk.

I was looking forward to really resting tomorrow but DH is now back to 5 days a work because they need everybody in management working on sales, so he is working tomorrow.  Good in the big picture but bad in my expectations of what tomorrow would be. 

Sweetpam - I sometime create sceens in my mind where somebody acts like a jerk to me, like questioning my ID because I now have blond hair, and I pull off my wig to show them I have a reason for looking different.  I have no idea why a part of me wants to cause somebody to feel shame because they did not know I am for the moment "special" but I have lots of those fantasies in my head.  I guess it is my ego wanted to work the canser thing to feel special and better than the rest of the masses.  

happy birthday Lisa...sorry your day was not better....I know it's a little late...but it's still your Bday here in Hawaii

Good morning Jewels,

Happy Birthday, Lisa!  I'm sorry your day sucked, though.  I hope you start healing and feeling better soon.

I'm sorry to all of those who are having a bad time with S/Es.  Chemo is something, isn't it?  Just when you think you've mastered it you get a sucker punch.  Although Taxol has been much easier for me I can't relax thinking something random is going to hit me or that the dreaded "cumulative" effect will get me sooner or later.

Speaking of random side effects, here's one for you.  I've lost all of my nose hair.  While I find it kind of amusing (as amusing as a chemo s/e can be) I think it's going to be a pain in the neck.  My nose is sort of burning, I guess because there's no filtering there...very weird.

Everyone feel good and take care of yourselves.

Diane 

I decided to skip all unnecessary errands and such today, including a monthy bc support group. I took DS to school and than came home. I am going to take a walk to enjoy some nature and get a little excercise.  Come home and clean up the mess no one cleaned after dinner last night.  Then climb in to bed and rest till it is time to pick DS up.  I have been needing to do that for days so today I am going to. Everything else can wait.  I am hoping that by next Wednsday I will feel mostly myself again.  That was the pattern last cycle.  Week 3 I was mostly OK.  Tired but not feeling like I was just spinning my wheels at anything I did because only 10% of me was really there. 

JillyG-I'm sorry, I can't imagine how hard that would be.  I'll keep my fingers crossed for you that your bone marrow surprises your onc and you can go ahead

I took a nice long walk on the public golf course behind my house today.   Brief  time between cross country ski weather and golf weather when I can do that.  At the end of the walk I decided I wanted to look up at the sky so I laid down on the grass and just felt the sun above me and the earth below me.  Stayed there a long time till I heard a voice inquire if I was OK.  A nice man making sure I was still breathing.  After he left I pulled off my wig and just sat for a few more moments with nature.  One thing I realized today was that even if a wig feels much like a hat you still need a hat, at least with a good wig that is mostly holes in what I guess you would call the cap. It was pretty cold out there even if it look like spring.  I saw robins and geese and ducks and tiny buds on trees and some bulbs popping out of the earth today.  Spring is working its way to the surface my fellow jewels.  Some of us are done with treatment and the rest of us will be there soon, even those who have had to deal with unexpected spring snows (ie delays in treatment) will get through this and be done soon.   And our hair and new /old selves will blossom as our hair growns back like slow growning but definetly growing grass. 

Happy B-day LisaLisa!

LadyJane - - Great for you for sticking up for your rights in the bank!  My sister-in-law (in Boston area) got thrown out of a couple of banks when she was going through chemo due to the hat/scarf combo (apparently bank robber) look.  She mostly laughed it off, but wouldn't take her hat off either.

JillyG - - It's interesting how different centers have different protocol's for treating.  My WBC's got that low and they only gave me two extra days off between txs.  Hope your MOnday Labs allow you to be treated.  

SE complaint alert: I'm feeling the cumulative effects of Taxol a bit - - very tired/winded easily and last night I awoke with my fingernails hurting/fingertips feeling warm.  My teeth hurt, everything tastes awful, my tongue feels thick, and I have daily nosebleeds.  I'm missing my eyelashes and eyebrows.   Last treatment is Monday, so I"m still going to hope for the best and call to see if there is anything I can do to help protect my fingernails at this point.  

Son's first t-ball game is tomorrow - - so will shift focus away from SE for now

Best to all & Happy Friday.  - C

Hello to all -

I am late to the group - although I have visited this site MANY times after diagnosis and pre-surgery.  I must confess that I am a little intimidated by the easy way that everyone seems to be able to access every fact about their situation.  I have to refer to my "cheat sheet" just to recall the basics.

I started chemo on January 20 and I have a LONG haul until June.  So - I'm here now and reading through the previous posts to have some company along the way.  I have met many survivors and have a good group of friends who (unfortunately) are survivors also.  But, none of my personal contacts have followed the same path, or they went through chemo long enough ago that things have changed.

Here's my deal -  48 yrs, Mastectomy 11/08; ALD 12/08; Chemo - Adriamycin  & Cytoxan 4x every 3 wks followed  by  12 weekly Taxol treatments.  Participating in a blind Avastin study.

I am happy to answer any questions and/or provide comments related to recovery and treatment.

Can anyone comment on the following:

 I am going to go from A&C to Taxol for the last 12 weeks - I would like to know if patients note differences and if so, what are they? 

I have this baby-like hair all over my head - does anyone else have this & will the rest fall out with the new drug?  This hair never fell out, is all over my head, and is oddly not gray, not my dyed hair and not my natural color.  Strands are one consistent color - light strawberry blonde.  I sheared my hair to about an inch went it started to fall out.  The hair is about an inch long - it's not new hair, but I can't tell if it's growing.

I have had hot flashes  - not like menopause flashes - they are quick and just make me hot, not sweaty - do I have a virus or is this usual? 

No period since pre-chemo - which I know is normal - will it come back?  Chemo is supposed to force menopause - what's that like?  I expected to have normal periods for about 7-8 more years based on family history.

I felt absolutely great on the day that I went to have my 3^rd treatment and was stunned to find out that my count was too low for chemo.  I had the treatment two days later followed by a Neulasta injection the following day.  It took me a few days longer to rebound after this treatment and the leg pains from the Neulasta are still with me.  I still think that maybe I have a bit of a virus - the hot flashes only started a few days ago.  I do not and have not had a fever.

Many thanks to all who contribute and even though we are all in this together - doesn't this just suck?

LM

I am definately blessed to be treated at the hospital that I am (Mass General).  But for what it is worth the nurse who treated me for # 2 told me that when she started 12 year ago the hospital had none of this stuff. So change is possible and when hospitals like Dana Farber and Mass Gen and other start to embrace the treatment of the whole person it is harder for other smaller hospitals to say it is all nonsense and/or bad medicine.  I am still angry at the post earlier about the hospital in Reno that one of you deals with that has only one pharmasist and 3-4 waits. That is just wrong!  Healing requires amoung other things respect for the patient and making an infusion center a pleasant as possible should be part of that. I know not every place has money or a view of a lovely river, but there should still be enough staff to properly care for the patients, a color scheme that is calm and soothing, staff who are trained to treat canser patients with the kid gloves the often need, as well as a smile and a hug if necessary.  Volunteers can be found to keep people company, play scrabble, donate books. 

I went to bed after dinner last night and let DH take care of DS bedtime. I read instead going right to sleep but It was really what I needed.  It is amazing how quickly I am getting tired this time around.  I do hope I am feeling stronger by week 3.   I have a friend who offered to pick up DS from school. she works in the same agency as me and lives in another part of my town- since preschool. I took her up on it one day but then let that slide. I think I am going to take her up on it for the last half of treatment, at least for the first 2 weeks.  Only having to go into thecity once rather than twice would make life much much easier and a bit less expensive.  I hate the fact that even though I am not working I am spending more on commuting than I was before.  Gas, tolls, parking- ugh! 

LM  Welcome.  And yes this just sucks.  I have had 4 tx AC and one taxotere so far.  There have definitely been difference side effects but not just between medicines.  Each treatment has seemed to be a new and exciting what SEs will we get this time???  As you go back and read through the thread you will find that one of the things you can be sure of is NO ONE experiences exactly the same things physically or emotionally through this journey although the common bond gives us hope.

Good luck with your txts.  Keep us posted.

ddlatt - Had the same SE.  I could not walk for three days my feet hurt so much.  How many taxols are you doing?  How often?  I had  (still have) a rash from head to toe that feel like sunburn when I shower.  Stinks. Was thinking I was going to ask about switching to taxol instead of taxotere but it does not sound like it was much better for you.

I am feeling much better  today...Day 9 after first taxotere.  Have a little spare energy. Rash is starting to go away.  Best thing is I am getting Tx every 3 weeks instead of two so I am looking forward, hopefully, to another week or more of feeling okay.  HOORAY!

Do have to go for repeat MUGA test on Monday and see the dr. on Tuesday to check on WBC so it won't be a "I can forget I have canser completely week" but that's okay.

Starting to worry about warm weather coming..Wig is horrible in cold weather.  Can't imagine wearing it in the heat and humidity of Maryland.  Friend who has been through this said 8 months after last tx before hair long enouhh to style so I am just realizing I will be bald through the summer.  Anyone have any ideas for cool comfortable summer head gear?

Patti

Welcome to the Jewells, LucyMichaels! Wish you didn't have to be here, but the Jewells have been a great support to me, and I hope to you too as we plug through this together.

I'm also on the Avastin/Placebo trial. I get unblinded on April 30. I'm not sure if I want to go on if I'm in arm C. Another 30 weeks of chemo? (at least it would only be every 3 weeks) I'm not having any of the SEs reported by others who have received the Avastin (there is a thread on "Just Get me Through Treatment here).

The Taxol has been so far much easier for me than AC. More energy, better appetite (mixed blessing, have gained 4 lbs already), and less heart palpitations. Went back to work 3 days/week after finishing AC and promptly caught a cold from the wealth of germs at the elementary school (or could have been from my dh 14yr old--we started sniffling last Sun). But, it didn't delay my tx and my WBCs have gone up since AC. Also, just started some Chinese Herbal remedy prescribed by my accupunturist/oncologist. For Qi and Blood Tonic--to help increase RBC. Hands are drier with Taxol, and am using LOTS of Burts Bees Almond handcream (kinda sticky but works for the red knuckles), and Burts Bees cuticle cream. Some of my nail beds darkened during AC, and I hope not to lose any nails....I think that would be worse than my hair. SO, good luck with your next step.

Today is my steroid buzz day after tx--couldn't fall asleep til 3 am again last night, but I'm too tired to get up and do anything. Trying to do housework and some paperwork for school while I have the buzz on. Tomorrow is my down day--more emotional I think than physical, but hard to separate the two sometimes.

I thought I'd be wearing scarves and hats to work, but my wig is fine and so far keeps me warm in the cold. It seems pretty ventilated, but we'll see when the weather warms.

kim

BerkeleyKim - If I discover that I am in arm C, I don't know if I have it in me to continue.  I HATE having a port and the thought of more chemo after June is more than I can think about right now.  It's nice to know that someone else gets this. (BTW: I know the port is convenient, but the idea of a foreign object under my skin makes my skin crawl. If I accidentally touch the bump, it's like nails on a chalkboard.)  I fantasize that I am in Arm B - best of both worlds - got the drug and didn't have to invest more time.  I hope April 30 is a great day for you!

I didn't see anything on this, but I may have missed it.  A survivor told me to use Rogaine for Women on my eyebrows.  One Q-tip swabbed across each eyebrow twice a day.  Rogaine is expensive, but one small bottle for only eyebrows should be all that is needed.  I already have such a long list of "thing to do" - lotions, sunscreen, etc. - adding one more thing to the list wasn't that bad.

LM