March 2010 Chemo Start

MNLinda: I heard back from my doctor and you are right-Decadron is causing my weight gain and water retention. My doctor isn't concerned yet. He wants me to continue watching my weight and if it jumps up significantly especially with shortness of breath then I am to contact him immediately. He is seeing me again at my next chemo on May 24th and will decide then if I need a pill to help with water retention. So, I guess all is well. Kinda. I'm not happy with the weight gain. I weighed 140lbs. when I started chemo in March and last night I weighed 152lbs!!! But this morning it was down to 146lbs. so that was better.

Yeshua4Me - when you talk with the doctor, try to pin him down on exactly what benefit you are getting from the Decadron.  I had this discussion with my onc because I was having so many negative side effects, and I had also found a research study online from the journal Cancer Research, which found that Decadron may reduce the effectiveness of Adriamycin and the taxanes (find the article at http://www.medicalnewstoday.com/articles/6289.php).  Supposedly Decadron helps with nausea, but I felt the other meds were controlling the nausea well, so I wasn't getting enough benefit to merit the drawbacks.  I was partially successful with the argument, hence the half dose.

Heather, you're probably just getting a little nerve regeneration.  Those nerves that were damaged and are trying to come back are just zinging you a little.  But talk to the doctor anyway.

Hi all - had tx #4 today and it went OK.  There were 4 of us in the party room and 3 were men, a first for me!

Had an interesting interchange with my onc.  He said I was doing really well, SE's are managed, counts look good and weight hasn't moved much, up or down, etc.  I said I was eating well and exercising etc, that if it wasn't for the d*mn cancer I'd be really healthy.  He stopped and said, "You don't HAVE cancer.  You HAD cancer.  The chemo is just insurance."  (edit to add, I was encouraged by his words but since I know there's always a risk for recurrance) I just said hmm and mentioned that I'm reading anticancer and he got this bemused look on his face like oh no, pop culture medicine.  I said what I've learned so far is:

1. Refined sugar is not your friend. 

2. Get at least one half-hour exercise every day.

3. Try not to eat things you can't pronounce.

4. It's good to know where your food comes from.

Of course, all that's good advice anyway so he didn't disagree with any of it, but I'm still gonna order a copy for him LOL.

On another note, the oncology nurses have been SUPER and I'm thinking of a thank-you gift.  Has anyone else considered this?  What are your ideas?  I don't want to get flowers because of allergies so maybe a box of chocolates?  Health food, ya know!

ps Charley, I only get the IV steroid, no pills except for compazine.

I have lost days...I mean I really can not seem to remember what I have done or not done in over a week.  I am constantly asking my husband and daughter and sisters if I have talked with them lately or if I have seen them....funny what the brain does......I even lost a sweater....in my home...did I throw it away?  my chemo is on hold....I am so full of steriods....the hives still come and go, appearing and disappearing....I cry...I sweat...I huff....I puff....a pill for this...a pill for that....can't remember shit...I want to get off this ride.  My head spins, I puke, I try to cook, I try to smile...I am sooo damn ill.  I am swollen.  I looked in the mirror today and just about died....I look like a bloated Uncle Fester......(That made me laugh and I remember it...so that is the highlight of my day!)

I do know that all this will pass....

I read with envy all the milestones that are being made.....you go girls....I will catch up....

I only take 4mg of Decadron on the day of chemo and for 2 days after. I also take Emend for 3 days starting on chemo day. My doctor says it helps with nausea.

About gift giving- I'm an author and while at my first chemo session the social worker came over to council me and do whatever it is they do. She asked what I did for a living and I told her I was a writer and she asked what I've written and I told her. Being how I was the "new girl with hair", everyone in the room was trying to listen to my and the social workers conversation. Anyway, when I named the titles of my books both women from both sides of me yelled out that they had my books! The nurses got all excited and came over and asked where they could get my books and I told them I would bring them copies at the next session. So...I ended up having a book signing at my next chemo session. My husband thought it was hilarious. Here I was hooked up to an IV signing and giving away books! Needless to say, I'm all for gift giving to our nurses!

Mastectomy pain- I also had sharp pains (very quickly) in both breasts for a while. My surgery was on Feb.11 and I haven't had any pain for about 1 month. I also had the sensation of milk being made, like when I used to breastfeed my babies. It was really weird. I haven't breastfed for 17 years! My doctor said the pain was from nerves healing and the sensation of breast milk was all in my head. Whatever. I also have expanders and whenever I got a new "fill" my muscle would be a bit sore for a day or two but no pain at all. Even during the fill. Now I'm done with the fills (I'm HUGE!! My husband loves them!!) and I get my exchange after chemo.

BTW, my SE from yesterday's chemo are a piece of cake this time! I know it's only day 2 but usually I'm really confused, dizzy, and just plain miserable. This time I'm fully alert, eating well (even made chicken for dinner for the family!), went for an hour walk after dinner with my husband, and watched American Idol. I might even tackle writing a bit tomorrow!

Wow sorry about the very large picture...guess next time I should downsize LOL

Staceyt;  Congrats on finishing chemo...I'm jealous that you'll be playing golf this summer as I miss it already.  Hit a long straight drive for me!!!

mamaof3bugs;  I too have finished 2 AC and am heading for my 3rd on Monday and I haven't lost all of my hair yet.  I told someone the other day that I look like Eddie Munster in the front and Linus in the back.  Pretty hilarious to look at.  I don't know if it is where we are in our treatment but I've been feeling a bit down as well.  I was so excited to be half way through AC and then as I sat back and thought about the next 14 treatments (2 AC & 12 Taxol), I really started to get down.  I can only say, try not to obsess about the magnitude of your entire treatment.  Today is more than enough for most of us to handle. 

Yesuha4me;  What a great gift you have given to everyone!!!

Wishing all a great day!  Heather

Charley;  Wishing you a week free of SEs.  Do you have a neulasta shot with every chemo treatment?  I have only had one Neulasta shot and that was 2 days following my last AC. Fortunately I had minimal SEs.  Wishing you the same. 

Fondly, Heather

Went with my wife to her weekly Herceptin infusion today and we had an interesting discussion with the ONC nurses. The last TCH treatment was 2 weeks ago and the Nuelesta was the day after TCH, since then she has been sick most of the time. She hardly eats and is sick to her stomach most of the time. I approached the nurse with the idea of her getting a script for Marinol, you would have tought I had asked them for herion or something. This pratice, I was told will only prescribe that drug in cases were you are "terminal". This struck me a a little bit over the top and we dropped the discussion. They gave her a script for prosac and zofran to see if this helped.

Both Carolyn and I have been taking cruises for the last few years and find that it is a very relaxing way to get away. I have been a regular over the years on a cruising forum (cruisecritic.com) and many there were aware of her condition prior to our cruise in late Jan of this year. I posted an update of what was happening and was almost in tears after reading the comments to my posting. There are some wonderful people in this world no matter how it seems at times. Many had wondered how she had been doing and one lady offered to send her  a couple of almost new wigs. I see folks give her the cancer look at times, but for the most part folks are kind and courteous. Many have been touched by this beast and have great compassion for those undergoing the treatment. 

On that last cruise Holland America Line got wind of her pending battle and really made us feel extremely welcome and gave us perks that made the cruise into one for a lifetime. I saw the photo album of our vow renewal and to this day I do not regret having asked her to marry me and wonder how she could put up with me all these years.  As she changes in appearance and gets weak from the drugs, I feel even a greater bond. 

I'm starting to feel very close in many ways to all of you, my March Ladies. Going into a battle is never easy and my only experience is with the Army in Vietnam. I am really taken back with the strength and attitude which you all display. 

Wow Lisa that is a tough call.  All I can say is do what you feel is right for you. I am taking taxotere (sister drug) and my onc told me the permanent SEs were less than those for Adriamycin which can give you permanent heart damage. (My cousin went thru AC several years back and her heart is perfectly fine) So I don't know that I would let that fear of permanent problems deter you if you feel you should be getting this treatment.

I know for me I am looking down the road to a long life and I don't want to get mets. I want to do everything possible to keep that from happening. You can't unring a bell.  If it means being more uncomfortable now I will do it.  I had BMX based only on my overwhelming family history of which I am the only one to get BC that did not have the gene.  And I had the test done twice. What's up with that?

Les - The kindness of strangers is overwhelming sometimes.  I have had offers from people I barely even know ... but it's because they know ... they have been through it.  I will have to pay it forward when I get the opportunity.

horsedoc - Glad you are feeling good and hope all goes well for you tomorrow.

Hugs to all, Charley

Horsedoc, my suggestion is for you to remind the onc nurse that you're a difficult stick and then request that they put a hot pack over your most promising veins. It can be as simple as a warm, wet washcloth/towel covered in plastic, wrapped around your arm for 5-10 min. Then they can visualize the vein better.You might even get one of those hot packs that you can find in a drug store. The heat is the trick. 

I had treatment #3 (FAC) this past Monday and it hit me like a ton of bricks.  The first 2 I was very lucky and pretty much lived my normal like while feeling slightly queasy.  I woke up (if you can call it that) Wednesday morning and could barely move.  For 2 days I had zero energy, could barely eat and was either in bed or on the couch sleeping.  My onc had told me when I went in for treatment that by treatment #3 alot of people have a harder time bouncing back and boy was that the case for me.  I had switched from Compazine to Zofran since the compazine was making me gag and I am holding out hope that it was the Zofran that put me in zombie land and will go back to compazine next treatment.  I know I am VERY lucky and shouldn't complain but I was really caught off guard with my reaction this week.

I am feeling much better this morning and think I am now through the worst of this treatment.

I hope everybody else is feeling o.k.