Anyone Starting Chemo Jan. 2010?

Georgiabird-Sorry to hear about your friend.  

I'm starting to get very cynical about the whole cancer thing. I really  think that cancer is big business for many organizations (hospitals, cancer centers, equipment manufacturers, Susan G Komen, the color pink etc) and that these folks really don't want a cure.  A cure for cancer would put a whole lot of people out of work.  As a cancer patient I've noticed that Cancer is getting so commercialized.  Look at all the pink and yellow merchandise. Everyone company/organization is jumping on the band wagon and profiting from cancer patients.  We are just pawns in the world of greed.

Paxton - glad you're home and on the upswing. So sorry to hear about your friend.

nkrun  It's sad to say, but I totally agree with what you said.  Cancer is a big big money maker for all involved except the patient.  It's staggering when I see the breakdown of my bills. Each chemo treatment was over $13,000 and the Neulasta shot alone was $7,000. 

paxton So glad to hear you are home and all went well.

I have been using "T.I.P.S. Nail Conditioning & Strengthening Kit" which I purchased from QVC right before I started chemo.  My nails have stayed great.  No discoloring and they are growing like weeds.  I also used ice on them during the taxotere which I believe helped too.

I am almost 1/2 way through radiation now.  14 tx behind me and 19 to go.  But who's counting.    I have been following their instructions to a T and so far my skin is doing great.  It's not even the slightest bit pink. (ut oh, I hope I didn't just jinx myself)

Wow, while I was writing this I just got a phone call that a friend of mine died this morning at 6am.  She was only 42.  She had been diagnosed with colon cancer a year after I was.  I feel terrible.  She was treated at a different hospital and her treatment was not nearly as agressive as mine was.  We had the same chemo, but she did not have radiation, which I did.  A year later they discovered it had spread to one of her ovaries.  Instead of doing a total hysterectomy they only removed the one ovary.  About a year ago it started spreading everywhere.  About a month ago she developed a large tumor at the base of her skull.  They did the cyberknife surgery 2 weeks ago and the tumor actually got bigger.  She was a single mom with a 17 year old son.  Her only wish was to see him graduate high school this June.  I just pray she is at peace now and out of pain.  Phew, this is gonna be a tough day.

Love and hugs to all you wonderful brave ladies out there.

Paxton--one step at a time. Youwill have lots of time tomake up your mind about recon. Just focus on healing now. Glad you are past one of the tough parts.

HI all,

youngmomof3 - I totally relate to the meltdowns. I find I do it too because I'm tired and frustrated. I was so in-control before and now I'm dependent on help (especially after the chemo). It may be the hormones, steroids etc. I often do not recognize myself and hope that my husband and kids will have short memories or forgive me for being so crabby. We will get through this - and feel more like before!  I hope to work through it without more chemicals. 

Georgiabirdgirl - The more you learn about cancer the more you realize that the word "cure" is unrealistically used by the media for such a complex disease. We do need better prevention and better therapeutics and luckily breast cancer is one of the most studied. There have been breakthrough drugs and while they will not work for me (I'm HER-2 neg) they have provided a lifeline to other women. I never thought I'd say this...but there is hope!   

I feel the best thing I did was sign my consent forms for tumor tissue donation before my surgery. It does not cost you anything and is a small way to help in the search for therapy targeted at a specific tumor profile and a better understanding of the disease. At most centers they often approach you just before the surgery (when you are stressed) and one does not realizes what it is for. There are established national (NIH-NCI) programs...as the video explains http://biospecimens.cancer.gov/default.asp

FYI, some states have developed regional programs as well....http://www.georgiacancer.org/res-tissue.php

About your diagnosed friend - all you can do is give her honest answers based on your experience. I also find that the response to chemo is so individual...there is no predicting how easy or hard it will be.  

nkrun -  I too am cynical about the "cause" marketing pink campaigns. When you see KFC selling pink "buckets for the cure" it is hard not to wonder if the motive is purely altruistic. Isn't it ironic how eating buckets of chicken (pumped full with hormones) can possibly help us even if they donate the odd $ to research? OK, my little rant for today.

pagowens -  I'm just starting to surface after chemo #5 Tax. The SEs last at least a week for me. My sense of taste has not returned ..although it does eventually. Food, although I shovel it in...tastes like cardboard or chalk and has removed the joy from eating. The mouthwash does not seem to help the thrush like thing immediately either ...but it too clears eventually.

 

Sorry I am jsut stepping in here cause I had treatment on Monday. My friend that went with me went and got us KFC and we didn't have to buy a Bucket of chicken I paid $1 for it and $.50 goes to Susan G. Komen.

What i did with alll of my pink stuff?? I remind my friends to do self breast exams and catch it early. I didn't do them. I th ought I was invisivble. I am doing the relay for life and I hope they are true to their word that the money goes toward research. some say it is diet. Some say it is enviromental. Mine, they don't know what causes my TN. so what do you do???

My oncologist told me not to eat red meat. We eat our own hormone free cows. Always have. We have fresh free range chickens. Some say i is heriditery. I sellPampered chef and we are selling our pink products in may and the money is going toward ACS. We have fundraising again in Oct. We might notg know how much goes for a cure but I know all of the pink braclets that i have handed out all of those women do their breast exams once a month to catch it early. SORRY i AM RAMBLING, DANG TAXON:(

Hi all,

Interesting conversation.  I do wonder about the business of cancer and I am torn.  The pharms are making TONS of money from cancer but I also believe that good people many whom have been personally touched by cancer work in the labs are trying to find better treatments, better prevention, and better detection.  I don't think will be ever find a universal cure.  There WILL be new treatments that will "cure" people like us and I think those treatments will be less brutal.  Look what they have done with the pre-meds.  We are suffering but not like most of the women 10 years before us.  I have to be hopeful (and mad) and put my energy into making things better for the women ahead of us.  As you know, I have hereditary cancer and my sister is also BRCA1+.  My daughter is high risk because even if she doesn't have the gene mutation, she has a mom with cancer, a grandmother with BC (dad's side), and several women on my dad's side of the family.  She is 13 and I want a better prognosis for her.  OK, there is my rant.

I AM DONE WITH CHEMO!  I truly can't grasp it yet.  I am so excited that I don't have to get injected anymore.  My onc told me to schedule having my port removed in 2-4 weeks.  I will definately do that.  My sister went with me today and it was nice to have 5 hours to talk with her.  My husband had a huge bouquet of balloons delivered to the infusion room with a note "NO MO CHEMO!"  Just a few minutes ago he had a huge bouquet of flowers delivered (they are amazing).  It was so nice because I feel like he has gone on with his life and I have been living this cancer life by myself.  Don't get me wrong, he always asks how I feel physically but I don't think he really appreciates the emotional toll it has taken.

My chemo nurses gave me a present at the end of the chemo and a really long hug.  I got choked up.  I also gave them a card and starbucks gift card (chemo brain is not very creative).  My oncologist said that I am entering a different and sometimes difficult phase.  For the most part, I have been strong and matter of fact about going through the diagnosis and treatments.  I have had many pity parties but it has not ruled my life.  She said that this is the time that I might need to consider counseling and/or a support group.  She gave me some referrals that I will check out.  In the meantime, I have recon, hysterectomy, and the 3 day to do.  I also have to deal with the side effects of my last chemo though I don't care too much about them since this is it.

Vegas - So sorry to hear about your friend especially when there might have been more that could have been done initially for her.  My uncle has been fighting prostate cancer for the last 4+ years.  He has never been able to go back to a normal life.  He took a turn for the worse this weekend and the doctor they talked to yesterday (not his onc as she is in hospital 30 miles away and they had to call 911).  Anyway, this doctor said they looked at the CT and the cancer is quite extensive and he has 6-12 months.  We have heard this before BUT I think they may be right this time.  Interesting timing, I finish chemo and am deemed "cured" and he is most likely going to die this year.  My parents happy and sad at this same time.  Cancer Sucks!

Sorry for the longwinded post.  You ladies are the reason I have been able to "be strong" throughout this journey!

Pagowens - I'm also sick of being bald. And my eyebrows are getting thinner day by day and I have just a few eyelashes. I guess I will have non left in 2 weeks for my daughter's graduation.
My DH and I thought it will be nice to have a small vacation in Miami, if we go for my daughter anyway.
Georgiabirdgirl - Did you sunbath in your vacation? Was your skin ok? Any advice? Did you go in the water?
I'm a bit scared about this vacation, as I will have the exchange a week after I'm back. Compared with AC, I feel much better this days. I am a bit slower than before, and get tired easier, but overall I feel almost normal (well as normal as can somebody be without hair, with black nails and itchy skin).

Tamatar - My onc recommended me for skin care, not just for foobs, Eucerin and Aquaphor. I tried both, Eucerin worked well for me, Aquaphor is really greasy.

Nkrun - I was eating tonight Kashi cereals, "Go lean Crunch!".Very good. I didn't realize thought it contains soy protein. I liked the back of the box too, it was encouraging you to eat right, exercise and meditate. Great job! It has to be pleasant to work with such good products.

Issymom - Congratulations. You did it girl! You are free! I can't wait for that moment, Friday is my last chemo day.

Have a nice week Sisters!

issymom, boy  your post sounded like I was writing it. I have the same SE but I will also add my eyes . I wake up with the lft one almost closed each morning , very watery and hard to wear my contacts . I just want to shed these glasses . Someone mentioned about that eyelash treatment that Brooke Shields promotes I'm going to check into that

Too me my last day of Chemo ( last Wed ) was a HUGE DEAL and I made sure it was . I had sandwiches sent in for the whole Oncology office . I thought I would be emotional but it was the nurses who cried when they pinned a button on me that said "I DID IT " When we got home the driveway (500ft)  of it was lined in pink and white balloons . Too funny I said to a friend you would  have thought that I was having a baby . She said you are, your  giving birth to a healthy new you . Interesting way to look at it .

Oh and I forgot to mention I also have slight lympdema to my lft hand . Theres a pattern here everthing on the lft . Glad it is Spring it keeps me focused on other things . I just love to garden so I spent 2 hrs yesterday at a Nursery  getting shrubs for me and my brother in law .

Also having fun planning the end of all of these treatments with a trio to the Bahamas in Aug . Just went and got my birth certificate so now will apply for passport .

Has anyone her started radiation with temporay TE ?

Enjoy the day

Fondly Linda

Georgiabirdgirl,  The Lymphdema  seems like it caqm on overnite . At first I thought it was from an old wrist injury I have because I have been doing lots of gardening . but Doc told me it was mild and to start getting PT for it . Strange but it is just noticable on my hand . PT is really helping a ton . Its amazing I just do this light sweeping motion up and down my arm several times a day . Don't worry yourself to much about it . If you don't mind me asking what is a node dissection I noticed your stats say 1/3 . I had 9 nodes involve out of 20 . Congrats on finding hair . Ha ha I'm balder now and chemo is over I keep looking every day . I rub my head like a budda belly hoping that will help .

It's been a while!  We got back from our trip to Kauai and then Monday had my heart function test and saw the doctor again.  Wednesday I started Herceptin and was admitted to the hospital just as standard procedure here in Japan.  Ran a very high fever and was pretty sick that night.  Thursday morning I felt much better and then they started my taxotere around 1pm.  By 4, I was back home.  No nausea, but severe muscle pain and weakness.  I have bad edema from my last AC, this was before the trip.  My kidneys and heart are fine, so just a random se.  So far I can deal with the muscle pain.  We'll see how tomorrow goes.

Is anyone else getting Herceptin and Taxotere at the same time?

Great to hear of so many of you getting to the end.  I won't be done until the end of July!  Then a scan and a discussion about radiation.  No recon until at least next summer.

Yeah Issymom, you made it!

Mslrg - I did watch the video!  Way to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I was impressed!!!

dgirl24 - I've been reading the book Anti-cancer, a lot to think about.  I also bought The Cancer Fighting Kitchen, and One Bite At A Time.  Great recipes to help with taste bud and eating problems through cancer treatment.  Can't wait to buy some of the herbs, especially tumeric and get started making some great recipes.

Paxton - so glad your surgery went well and you are home.  Don't decide about recon until you feel better.  Also, will be praying for you through this difficult time with your friend's death.  We had a friend that just dropped dead on Sunday AM.  They don't know why.

VegasDiva - How did you use ice during your taxotere?  I will have to take some with me next time.  They didn't offer that to me here.  My nails have grown better than ever on AC.  My nails NEVER grow, but now I have not hair yet beautiful nails!  go figure!  So sorry about your friends death. 

Youngmomof3- so glad to hear about your dad!  That is a blessing.

Georgiabirdgirl-About what to tell your friend, I have a good friend that has bc and she is about 3 months ahead of me.  When I was getting ready for my AC, her husband told her that it was time to be honest with me.  I was so glad she was.  She didn't whine or complain, just stated simply and clearly what might happen.  It really helped me to plan and get my husband and daughter involved.  I think there is a right time to let people know just what difficulties they might face and it sounds like that time might be coming up for you and your friend.

Well, going to run!  Tired out!  My eyes are still weird from the AC!  Keep going everyone!!!

Graceokinawa- glad you had a good trip.  it looks like fun.  I did hold back a bit when talking to my friend, because I kept telling her that it all depends on her chemo- which is true.  But, I mainly I told her that it was tough but has gone by faster than I expected it to, and wasn't as debilitating as I was afraid it might be. 

Now, I'm trying to get a handle on what the effects of my mastectomy are going to be for me.  Logisitically, I'm worried about how to have a 3 year old running around when I can't even lift my arms and get out of bed.  For those who have had BMX with TEs how difficult was/is the recovery?  How much mobility do you have after you get home from the hospital?  When can you drive?  I'm trying to plan my coverage for the summer and I just have no clue what I'll be able to do.

Hi all - well the bone pain from the Taxotere has gotten worse over this past week, it was  very mild the first few days after treatment, now there are times it's down-right unbearable.

On a positive note, a little over a week ago, just before my first Taxotere treatment, I noticed new hair on my head. It's very fine and very light in color but there is new hair growing there!!! I had an extra week between my 4th FEC and my first Taxotere and not sure if that one extra week allowed for it to start growing back or what. I'm so hoping it doesn't all just fall right back out now with the Taxotere, it sure would be nice to have some hair this summer, even if it is extremely short. It'a already getting nice and hot here in Texas and that wig is hot when it's 90 degrees outside.

Issymom:  I plan on only taking the Oxycodone as needed for pain.  My script is 5mg. every 4-6 hours.  Last time it only was painful for about 3 days.  Mine too should start tomorrow.  We must be on the same schedule.

Did you already have the neuropathy when you took the Glutamine?  I was thinking that I would wait until I got some indication that it was going to happen.  Did you take B6 too?

For me the hair thing will be September - YEEK!  But that's a full head of hair.  I'll be happy with some short hairs as I wear my hair pretty short anyway.  But we will have to be careful about sunburning the head this summer.

Hope your achiness doesn't last too long this time.  Take care next week is always better.

Bubalu  yo have lots of questions. One thing  can espeond to is that my hospital has a "Breast Cancer Navigator". Whenever I've had a urgery,and the day I received my diagniosis, she was there. On the day of my mastectomies, she showed up with a tote bag with goodies: toiletries, little pillows for placing under arpits and under seatbelts after syrgery, a sort of fanny pack thing to wear in the shower withpockets to place drains, an a mastectomy camisole, slo with pockets for drains and a set of prosthesis.  can tell you, though, rigth after surgery, you could care less about prosthetic breasts. You just want to get home as quickly as possible on the least bumpy roads, and then get into bed. I have never used mine. As I got saline shots in my TE, they have grown. I had shots yesterday,and my "foobs" are taking shape--about a large B cup now. But the pain!!! I was up in so much pain last night. Double doss of barbitutates and valium only barely took the edge off. Iasked my PS about getting something else, but she didn't prscibe anything else. The righ side is the worst. It appears a nerve was cut and thenerve pain is terrible. It goesall he way down the back of my arm to the elbow--both sides,but unbearable on the right. PS has prescribed me 6 weeks of physical therapy 3 times/week because she says some of my pain is from scar tissue that has adhered and is now being pulled by the stretching caused by saline shots. Word of advice: when you get your MX, make sure you do the exercises they tell you about; it prevents scar tissue and the future pain I'm going through right now.