Starting chemo January 2009?

lady jane - i received 265mg of taxol in my treatment. last night was by far the worst i've ever experienced in terms of pain. pulsating, consistent, excruciating bone pain in my legs and feet and ribs. the worst is pain in the area of the ovaries. i haven't had a period in 5 years, but the pain feels just like ovulation but very intensified. couldn't sleep at all last night and pain meds didn't help. i have a call in to my doc now. don't want taxotere. it wasn't recommended by my UCSF doc, who said AC/Taxol is the most aggressive approach to triple negative grade 3 cancer. i hear that taxotere is harder to deal with than taxol, which at this point i can't even imagine. i don't have tingling in hands or feet (yet?), just the severe bone pain. oy!!!! not happy!!

ddlat - I hope you are feeling better and that you and your doctor can find a way to make treatment more tolerable.

 I have been feeling reasonable well this weekend.   Enough energy for a nice walk around the golf course today, though I  need to lay down and rest afterward.  Yesterday we went to a playground with some friends and then to dinner at CPK.  Nothing that required big energy but I was not exhausted even though I am at midpoint in cycle #3.  I am wondering if maybe the Reiki is having a positive effect on my health.  I don't remember midcycle weekend from last time but I do remember being  very very fatigued the Monday and Tuesday after and coming back to myself around Wednsday.  Anyway, some of you having big issue with SE might want to concider trying one Reiki treatment and seeing if it does anything.  It is kind of out there as a complimentary care - energy being funneled from whatever you call the source of life energy  (for many it is g-d) through the crown of the healer and out his/her hands into the healee.  They don't even need to touch you. So it is pretty much harmless if it is all a crock, other than whatever fee they charge you.  The treatment I got cost $75, which I think is on the high side, but it was a recommendation from a relative so I went with this practiciener.  Anyway, not pushing it since I am still sceptical, but since I am noting that I seem to be doing better than I expected energy and SE wise, I thought I should mention it.  

 I need to go get dinner started. 

I wear the "frozen" gloves during the Taxotere infusion. I wear them the entire 1 to 1 1/2 hours! My hands do get very cold. So far my fingernails are hanging in there. I do have some dark spots but no pain or ridges. I also eat ice during the Taxotere and the Adriamyacin, I have had no mouth sores so far--I do have mouth and tongue tenderness and most of the time my mouth feels hot inside.

Have treatment number four on Thursday----

JillyG - Thank you so much for doing the research on Tamoxifen.  That is really interesting to learn.  I will need to pursue getting the genetic testing and some answers about whether or not Tamoxifen can benefit me. 

LisaLisa - happy very belated birthday!!!  That's terrible news about your son.  Why do some days have to be so tough?  I hope he is doing alright and you are doing better with the belly stitches.  I am thinking of you.  

ddlatt - we are lucky.  We are all lucky not to be in shackles.  I think that way all too often, but it's true.

Pamela - I promise not to rant about family.  I don't want to go there.  Suffice it to say I am not wasting my energies on toxic dynamics that dead end every time and leave me cold.  Boundaries are important so you go right ahead and take care of yourself.

I hear everyone on the complaining thing.  Someone at work made an issue of how often we have these optional pot luck days.  She was pretty upset and made a really big to do...felt we had too much shared food. Please lady, get a life.       

Congrats to everyone who has had wig and hair triumphs.  I think of all the no hair experiences as triumphs.  Hair is just a nice, human thing and I think the challenge of not having it makes us appreciate everything more.  I have soft, strawberry stubble that isn't growing.  I put a tiny bit of olive oil on my head yesterday but am not holding my breath on that one.  I hope for a pixie by XMas.  I hate being bald and having hair again is thankfully, something to look forward to.  As long as there is something to look forward to we are OK.           

I am 3 days past Taxol #2 and it's too soon to tell how hard/easy this is. In general I do not feel nearly as poisoned as I did with AC but last night I had terrible aches that seemed to shift around to different parts of my body.  I am getting 80mg Taxol weekly for twelve weeks, with.....an IV of 1 mg - 2.5 cc Dacadron each time, a Benadryl infusion each time (not sure how much) and an Anzemet infusion each time (not sure how much).  Anzemet, I am told, is given for nausea and I have not tried to find out anything else about it.  I am due for some research. 

I will not have Neulasta unless my Onc decides at some point that I need it. I trust his experince and judgement.  I do. I learned that he had a melanoma and has been through chemo himself.  I also think that if I requested anything in particular he would be open to it.  He is not planning to do any kind of scan when I am done with chemo but I will likely pursure having an MRI.  Overall, my treatment has been excellent.  Really, it has.  I am lucky.  The cancer center I go to is too busy and my doctor doesn't hug me, but he is doing his job and the place is very nice in every way.  I suppose once I am facing Tamoxifen I will have to guide that myself somewhat.  I appreciate the general lack of complication I have had through this.

I had such aches that I did not go to work today.  I am surprised because I had been feeling so well.  Aches are just weird.  My imagination goes wild and for nothing I would guess.  I've been able to go for two mile walks every other day and have not had one bit of nausea.  My nails feel a little sensitive and everything is very dry, eyes, skin, vagina.  My hands and feet are orange. I almost think I am eating too many carrots!  I love them.  I supose that could be doing it.  I had a very clotty, crampy, nearly black in color period last week that lasted longer than they usually used to.  I guess my body is letting go and getting back to its rhythms now that AC is done.  I wonder what the next 10 infusions will bring.  I agree that each one is its own little journey, that's for sure.  I expect a cumulative effect.  We'll see.

So far, I feel very good and am really glad.  The walking has done wonders for my mind/body.  Those simple pleasures are everything.        

I'll see my plastic surgeon on the 27th.  I have been diverting my mind with cosmetic concerns and am researching for my revision and shaping surgeries.  I look at an awful lot of breasts on-line.  The obsession is wearing on me.    

What a ride this is.  Mostly, I am happy for it as long as it is all good and bedhind me, behind all of us someday soon!  And why not?

Well, so glad that a meeting at school was cancelled today, cuz I was up coughing so much last night! (My day off anyhow.)

Lisa-glad you're feeling so much better. I hope it's not MSRA, and I bet it's not, from what I've heard from a friend who had it after heart surgery.

Year of the Hat--I had aches all day yesterday after T #3--Gone now after a Tylenol last night, but my neck, shoulders, and chest hurt this time. Last time it was my legs. Not really terrible, but sorta flu-like and just tiring. Wonder what will hurt next weekend!? 

Last night was hard--I was so tired and just broke down in front of my 14 yr old--hadn't done that in a couple months and always tell myself I won't again. Poor baby has to comfort me...I'm going to blame it on this cold and the rain and try to believe that I'll have my life back some day (but will the monkey on my back of worry ever go away???)

Renrel-I need to try the Reiki--have accupuncture today. I wonder if there is a needle spot for "improving mood"?

PrincessKauai--I envy where you are now--DONE TODAY!!!!!  BIG HUGS! I hope it went well and that your fingernails hang in there. I think I"ll take my lunch box ice pack next time!!! Are you doing rads? Do you get a break? My rad onc recommended just the chest wall and not under the arms. Seems like the cutoff for that is 4 nodes, but that makes me a bit weary since I'm just one node away.

Bev-Good luck Thursday!

Hi Pam--my 19 yr old had her 4 teeth out at 18. Looked like a chipmunk but really had no terrible SEs (ha--never used that term back then). Anyhow, she used homeopathic arnica recommended by a friend. Seemed to work for swelling, plus she was really good about ice packs. Also the pain meds. She ate lots of yogurt, scrambled eggs, never broke into the instant potatoes, liked pudding and jello. After a couple days she was fine.

Good luck! (and with the "relatives" too). My 19 yr old will be home next week for break. will be nice. Wish son would visit but I think he's going camping. I guess we'll get our fill of him after he moves home for a bit after graduating in June!

One word Jewels......STRAWBERRIES LOL.....I don't know if they worked, but my blood counts came up huge and I am getting my last chemo today afterall.  I am so excited, who would have thought chemo would be such a welcome thing???  The nurse told me last week that I was going to be delayed but I  begged to come in and be checked today and they called this morning and said they came up considerably and the nurse asked "wow, they came up so much over the weekend, what did you do?"  I told her I ate 2 large packages of strawberries.  Now, I don't know if anything can change your counts (the nurse had told me not rest and not diet, nothing you can do) but I read strawberries can increase WBC's so I tried it.  Who knows, all that matters is I am going to be DONE today.  Then....on to lovely Tamoxifen, but I'll worry about that another day.....

Lisa - good luck today, we'll be thinking about you, you've had such a rough go lately. 

PrincessKauai - congrats on last Taxol...woohoo!

Yeah for high WBC counts!!!  Yeah for stawberries!! 

 Out of curisousity do you know if your Absolute Monos were high when you went in the first time?  When I had low counts (WBC 1.6  and Absoluted Neuts .13 ) my  Monos were high (27). The doctor said he thought the monos indicated my body was already gearing up to replace the WBC and/or Absolute neuts) the next day my WBC count was 2 and Absolute neuts was .28 and I believe it about doubled the next day again to a WBD of .5 which allowed me to leave the hospital.

Here it sit with a 100.5 and I am grateful for that..  I have been running a fever since  Sat. afternoon and it spikes up when tylenol wears off.  Highest has been 102.6 and believe me the bone pain is bad when it gets that high. Spent most of Sunday in the ER and they were able to get fever down to 99.8 before sending me HOME!  Yes I said home...I was so grateful that I  did not have to be admitted again.  My WBC was 4900 so I did not have to stay.  My poor husband has had little sleep though taking my temp every few  hours and feeding me tylenol.

Seeing Dr. for follow up tomorrow so I hope he can explain what is going on. My DH is starting to harp on me about not working...Seems like I pick up everything.  On Friday I sent two children home who were running fevers..He may be right but I am not yet willing to admit it.  I think being home would depress the hell out of me.  Only 3 more treatments.....

Patti

Hotbolt - I am so sorry for your loss.  It must be extra hard to take that right now.  Know I am thinking of you.

Ladyjane - Glad you did not have to stay at the hospital and that the fever broke.  

 jrgolomb - Glad the infection is clearing up.  I can see how that exam would be embarassing, even after all of this.  FWIW I have not had any bad issues with Taxotere.  One mouth sore the first time around.  Sore nail beds but no visible problems.  Toes extra sensative to cold weather.  There is no reason to assume yours will be worse just because some people get hit bad.  Each treatment has someone knocked to the curb by it.  

Hobolt-Sorry for your loss, that would hit anyone very hard even if they weren't going thru what we are.

Hi Ladies,

Last TC tomorrow and nervous/excited/scared about it. I am tripneg so no more treatment after this and pray that this is my last ride down this road. It's been hard but doable, bone pain was the most bothersome s/e for me.

Most of you know I have a son on the transplant list (liver) we found out today he is #6 (yeah) so hopefully it won't be much longer, he was admitted to TGH for severe ascites (swollen painful Belly) so they will drain that off and treat him for the infection in the fluid, I ask that you remember him in your prayers, just like us, he cannot go thru a transplant with infection so he is temp on hold until the infection is cleared (IV ABT) hopefully he will be home in a few days and transplanted soon.

SE free week wishes to all, GOD bless all of us.

Holtbolt - I am so sorry to hear your friend died, especially hard when you are fighting such a hard battle right now and going through many emotional ups and downs with this disease, it really does reinforce how fragile life is.  I asked my oncologist yesterday if he thought I had a good chance of living until I am an old lady (I'm 33), cancer free (pretty unfair question eh?) and he said yes, but none of us, whether we have cancer or not knows our future and we have to live each day fully and try to have a great time while we are here and not worry too much about tomorrow, just take it as it comes (hard to do when you had cancer, but still a good message).

Misty - congrats on being COMPLETELY done with treatment, that is awesome, so proud of you for finishing everything.  You must feel wonderful, or at least, you will very soon   Your son is #6, that is great, I will keep your family in my thoughts, and hope he does not have to wait much longer, sounds like a transplant will be in the very near future. 

BerkeleyKim - I would think frozen strawberries would count for sure, didn't I read frozen fruits and veggies hold in all their healthy properties and are sometimes even better than fresh?  Chime in anyone that knows that answer. 

Patti - good luck at your doc appt today.  Glad to hear you didn't have to be admitted.  Your hubby might be right about working, it may be nice to stay at home and take it easy for bit, but as you said, you are happier being at work, so it's a tough decision.  I worked full time as a health care analyst but stayed home since surgery in November, sometimes I go crazy, but I have a 3 year old that keeps me quite busy, and I love being home with her, so it's not so bad.

Renrel - not sure about my Mono's.  But I do think that is exactly what my case was, I was probably right on the edge of getting my counts back when I had my bloodwork, so they just rose so much from Thurs morning to Monday morning. 

Kmmd - yes, let's compare Tamox stories.  I start mine in one month, they said to wait 1 month after last AC to let me body recover and rest and then start them when ready.

Well Jewels, last chemo (AC) was yesterday and I couldn't be more relieved.  I know lots of us are finishing up treatment forever, or at least starting their last treatment medications.  I think Spring will be a good season for us Jewels! I was very emotional at my last appt with the oncologist before my last tx yesterday and I told him how afraid I am to be finishing treatment because I am so terrified of what is in my future and I think about recurrence all the time, and he told me that it will take a little bit, but each month I will think about it less and someday it will feel like I have awoken from a bad dream and I will be able to enjoy my life worry-free.  I tear up thinking about that.  I will have my physical life back soon (hair will regrow, I will get reconstruction, I will have energy and feel great) but I just hope that I get my "emotional" life back as well.  It'll be a long road, I'm sure, but If I got through mastectomy and chemo, I know the heartbreak will subside as well.  This year, my cancer has devastated my parents, my friends, my husband and kids and it has affected my life forever, and I don't know how to handle that, I may seek counselling to deal with the anger and emotional stuff that remains.  I just want to see a cure in my lifetime, and I think that would make it all worth it.  There's my big rant for the day.  Off to lay down for a bit until preschool is done.  Happy St. Patrick's Day everyone!

BerkleyKim - All I have taken is a a spoon of honey to calm the cough, since the did a study where it worked better than over the counter stuff and I had it on hand.  In the past I did try codine for a cough and it did seem to help.

Misty - I wil definately keep your son in my good thoughts.  I can't imagine how hard it is for the two of you to be both dealing with these major health problems at the same time.  Life certainlly feel unfair at times.

Jilly- Funny how things affect differnt people diffrently. I can totally understand how you find it hard to face life without treatment because it feel in control to be doing something, and how having had canser makes you feel at risk and insecure about life in general.  But for me, it has had a different affect.   I find it easier to live for or in the moment, given the cancer. To me it feels like I finally read the directions that came with me at birth. The ones which state that my body has a limited shelf life so it is in my intrest to use it now rather than leave it on the shelf to enjoy tomorrow.  I think that what makes us different from those who have not had a serious life threatening illnes that may come back is not that we have a shelf life and they don't but that we know we had have shelf life and they don't.  Now some days it suits me to spend my bodies time in bed reading and other day shopping and other playing in the dirt with my kid.  But I am going to try to spend it mindfully rather than let it expire like all those coupons I cut and never use.

Just an addendum to my early post. 

1) I also drink Breath Right tea at bedtime when I have a chest or head cold and find it really does help.  

2) While I believe what I said about living for the day.  I do still have days and moments where I feel sad, depressed and scared.  And I am not sure on the days I don't if I am living in the moment or living in denial.  A book which was recommended to me but which I have not read yet (though I lucked out and found a used copy as a libary sale) is After Breast Cancer. A common sense guide to Life after Treatment by Hester Hill Schnipper, LICWW.  And if there is a Wellness Center anywhere near you they do weekly support groups that you have to commit too and they expect you to continue until a certain number of weeks after treatment because of the normal fear and sense of loss that comes with the end of treatment.  For the first time life is not revolving around cancer or cancer treatment and the rest of the world has moved on but most woman who had bc don't move on that quickly.  It takes time.  Many woman break down for the first time after treatment after being very calm and strong from the moment a lump was found through the last chemo or rad.  Anyway, when I thought about my last post may have indicated I am totally ok with everything and I wanted to come back and clear up that I am not always OK, but that the words I typed are what ring true for me right now as the way I try to feel, while not supressing other less postive thoughts.  But I try to be aware of the thoughts and feelings when they come and observe them rather than sink into them, if that makes any sense. 

Hi ladies,

I am finished and it feels so good to say that and be joining the ones who have said this in the last week, many will be joining us next week I am sure.

kt57-Renrel-jillyg-

My sons name is Malcolm and thanks you very much prayer does help, I sent out a prayer call last night to all my prayer warriors and can you believe it they called today and told me he is #4 today, 2 spots in 24 hours, yes he will be blessed with a liver in no time I am sure.

Thank you all for your thoughts and prayers, it's extra special because I know that you truly have your own problems right no but take the time to care about others.