Starting Chemo April 2009

Crawling out of the Hole...

Well family, it's been an interesting 4 days.

Chemo #3 started out normally with a slightly early arrival, 7:45am for an 8am appointment.

It was unnaturally crowded in the waiting area. After I checked in and sat down, lots of women started asking me about my head gear. I decided to go wigless and wear one of the luxurious 100% silk head wraps I got from www.franceluxe.com This incredibly generous company provides one free "It's a Wrap" through their GoodWishes program for any woman going through chemo. The wrap is a little too large for my head, but I wore it anyway and it looked fine.

Every woman who asked me about the wrap was a "newbie." So I spent a large part of the morning giving them my tips and hints, all of which I learned from other survivors who informed me prior to my treatments.

The sheer number of new women starting their chemo journey that day was a little depressing. Then it became annoying as I realized they were taking the newbies in first. LOL!!! So it was almost 930am before I even got called back!

For those keeping track...I lost 5 pounds the first week of chemo, gained all five back, lost two, and have now gained 1. Maybe I oughta lay off the Stouffer's for a minute? Nahhhh....

Anywhoo...I didn't get Nurse Joanne although she was on duty. She did come by to visit though. I got Nurse Susan, which turned out to be a blessing because she is a 4 year breast cancer survivor! AND she had the tummy-tuck procedure I'm seriously considering for reconstruction, so it was really nice to talk to her in depth about her experiences.

BFF Zulema was awesome going to get snacks and real food. Ok, explain this to me. WHY would you put vegetarian chili on the lunch menu for people having chemo? It's yellow with vegetables...think about it...yeah...not so much. *smh*

Mom brought big beautiful strawberries which complemented the chocolate pudding VERY well! That was a winner!

Speaking of winners, I did NOT win Scrabble. In fact I lost. Mom came in 2nd, and Zu won. The only dirty words from me were RIDERS, and BULGES. LOL!!! I need more practice...

Given all the newbies and a nearly full chemo suite (31 patients can be getting chemo at once), I did not get my pre-meds until 11:51am!!! It was a LONG day!

I talked numbers with my oncologist. Right now my risk of recurrence are somewhat hard to predict with the advancements that treatment with Herceptin brings, but he estimates it to be 30-40%. That may drop to as low as 20% if I consider having my ovaries removed, seeing as my cancer is estrogen-receptor positive.

My current 10-year survival rate is 70%, which again can be improved when the 5-year #s for Herceptin start to come in. I am a part of that important five-year grouping.

The new advancements in treatment are heartening, so I take the numbers on advisement. Having chemo first also makes the numbers harder to predict. And of course, lifestyle, overall health, stress, all play a part in improving my survival and reducing my risk of recurrence.

BFF Cathy came up to stay with me again and I decided to go see and have dinner with my Dad. Dad & I have vigorous disagreements over my chosen course of treatment/cure and it has made conversations difficult. But he is coming around and I think being able to see me do so well (Praise God!) has helped calm his fears for me. So we all went to BoneFish Grille and I managed to fall asleep at dinner! LOL!!!

Yes, folks, the fatigue is real! I have been far more tired this time around. This is not helped by the buzz the steroids give you. My body is still confused, but I'm managing it better because I know what to expect. So in some respects this process gets easier.

I realize that I need to nap or rest after every energy-demanding task. I get up and make breakfast. Rest. I brush teeth. Nap. I take shower. Snooze for real. Get dressed. Sit in chair for a minute. LOL!!! So my normal 40 minutes to get ready and out of the house has now expanded to 90 minutes. It's all good...I just know now!

Today I took myself to get the Neulasta shot. Came home and crawled into bed and actually got some decent rest right into the afternoon. Just up a few times to pee and eat. I tried to stay awake through the afternoon just so I could try and guarantee some sleep tonight. We'll see.

All this to say, I'm crawling out of the hole slowly. I plan to take tomorrow off and do laundry and get myself ready to return to work later this week. BFF Steph will resume driving me to the train station on Wed & Thurs. That worked out really well last time. By Friday, all meds should be out of my system and I should be back to normal energy levels. I am blessed and so grateful that my experience thus far has been DOABLE!

Going to go lay back down...

Alaina

Hi Pam

I had my last done dense AC on the 19th - I had a lot of trouble with this one with fatigue and generally not feeling well. But today is a new day and back to work and I am grateful. I did feel well enough yesterday to venture out to the casino with my mom for a few hours and actually made a little money. That never happens HA. Sounds like I am just a day ahead of you so when I have Taxol on next Tuesday I will post how it goes.  

Stephanie!

I'm glad to hear you are feeling a bit better. And that you won money. Are you close to a casino? We have to go to another state to gamble here, so it's a trek!

 My last DD of AC was last Weds and it hit me really hard too. I had really hoped to avoid the awful feelings from chemo, but this is incredibly hard. I've had some nausea, but really the fatigue and just feeling bad is incredible. 

I go for my RVG (or MUGA scan) tomorrow, I'll be on Herceptin with the Taxol so they need to make sure my heart is doing okay. I am nervous about the SE of the Taxol. The whole thing about possible allergic reaction to it makes me nervous.  Just 12 more weeks! I can hardly wait for the summer to be over!

Pam

Oh yes I live in Kansas - yes the land of OZ. : ) There is a casino 45 mins in every direction from my house.

Jeezy, You and I have almost the same diagnosis....what are your taking for chemo, if you don't mind me asking.  I start June 12th and will be taking  Carboplatin/Taxotere/Herceptin every 3 weeks for 6 cycles, then Herceptin continuing on for a year!!!!  I'm nervous about chemo and how I will react....if I can work.....I think that the chemo, will be the first real sign of me looking sick....everyone, says you look great, after my bi-lat mx w/diep.  Sorry to be jumping in on your thread for April Chemo....there isn't one started, that i saw for June!!!  Thanks all!!!!

Candy, hi.  I was on taxotere/cytoxan, and work in marketing full time.  I did what Lesley did - got my treatments on Thursday, so took off Thursday, but worked on Friday, because you are usually hopped up on steroids and you have the "high" and don't really start feeling bad until typically Sunday.  It is different for each type of treatment, but that is what also happened to me.  Sunday was the worst day, Monday I took off, and usually Tuesday, but managed to work from home via email and some phones on those days, returned to work on Wed., still feeling a little in the chemo fog, but well enough to work.  I am definitely a Type A - and am the only person in my department, so I have a fairly good-sized workload.  I am a multitasker, and found it very hard to do while on chemo - so keep that in mind and Lesley's comments about your commute and the meds they typically give you to help your body and mind deal with the chemo and anxiety you might have could make you drowsy or a little sluggish - if at all possible, try to have someone take you to and from treatment.

I do also agree with Lesley - it was good to feel well enough to go back to work and be busy, helps you take your mind off things, but also be aware you might not feel 100% the week immediately following your treatment, that usually is the second week.  If you are able to do more telecommuting, do so, if for nothing else than you can rest in between calls or projects - your body will demand it!

Make sure you get lots and lots of fluids during treatment - water and gatoraide, a little white grape or apple juice were all I could do, but everyone is different.  Protein and complex carbs also are very good - whatever you have an appetite for.

Good luck!  You have joined a wonderful sounding board.

I had my RVG (or MUGA scan) today and am getting ready to start Taxol and Herceptin next week. I am nervous about the side effects, but really really hope that they are significantly less than the AC that I've been on.  I'm grateful to be done with the DD AC!

 My latest obsession is about a recurrance. I don't know why I'm thinking of it right now, but my whole decision making about having a lumpectomy rather than a mastectomy was about survivability rates rather than recurrance rates. All of a sudden it hit me that this could come back and I'd have to go through this or something like this again! I wish I wasn't thinking about this now, because for the most part, I've been incredibly optomistic about this treatment ridding my body of cancer and hadn't really thought beyond that. Now, I think because I'm exhausted and can't bear the idea of going through this again, I'm scared of a recurrance. Now I'm rethinking the whole lumpectomy thing and wondering if I should have a double mastectomy to help ensure this doesn't come back. 

I don't really know where I'm going with this, but thought maybe someone here is also obsessing like this too.

 Next week is week one of Taxol and Herceptin, I'm counting the days for this to be over!

 Pam

I am having TC #3 tomorrow (Thursday) While I am nervous about SEs, the pattern thus far has been much as described by coming to terms. Friday I am still hyped up on the steroids. I start going downhill on Sunday - totally exhausted Monday and Tuesday and start feeling better on Wednesday. Unfortunately, this is my second dx of bc. Four years ago I was on CEF and worked as much as I could during tx. I'm also in education so applied to use my sick leave when needed. This second dx (a new primary) caught me by surprise and I'm finding the chemo harder. I also had bm this time and will also be doing rads again. So I'm not working now - partly the fatigue, partly the long drive, partly the potential for infection especially during week 2 - so I'm using my sick days for now. Once I know when rads will be done, I'll make a decision about going back to work but this time it was the right thing for me to stay at home and to not think about work.

Thanks Stephanie,

I am feeling a bit better today. I think I've just spent too much time this week at the hospital, you know! I am more optimistic today about the treatment I have chosen and am not going to think about a recurrance! I'll get my kids to school this morning, take the dog for a walk and then see what the day brings (most likely a nap!).

My RVG was normal, I got the results last night. What a relief! I am so happy, I think maybe I was worrying about that more than I realized!

Today is a new day and I'm more hopeful today!

Pam

Amy, try black cohosh.  I have been taking it for years for hot flashes and it helps - you will have to take it twice a day until they calm down some, but it is hormone free and doctor okay'd.  Good luck with those!!

Oh, that is not good - I'm ER+ and they told me it was okay.  I'll do my research too.  Hope I don't have to suffer with these darn things again!

Congratulations! bombus 

I had my 3rd of 4 yesterday.  Hope you don't have any bad SE this time.

I wish you luck on the taxol.

kathy

luckofthedraw - has your doctor checked your WBC?  I didn't get the blisters in the mouth, you poor thing, that has to be absolutely miserable, but when I developed the diaper-rash like blisters and rash in the nether regions, it turned out to be a fungal infection due to a very low WBC.  He gave me a prescription for Nizoral cream, an antifungal cream that worked.

I'm sorry you are having such a hard time, I was there, with the really horrible side effects - and it's sad to read someone else struggling with their treatment too.

Good luck and hope you get some relief.

Luckofthedraw, have your oncologist call in Miracle Mouthwash.  I got that when I had a very bad sore throat.  The nurse said it would help if I had any blisters in my mouth.  The mouthwash numbed me up fairly well so I could eat and swallow.  Good luck.

tulipbebe...don't get all worked up about taxol and bone pain.  A lot of people never have that problem at all.  I had 8 taxols weekly and never once had bone pain or much of anything else besides neuropathy in my hands and feet, and that goes away eventually.  While in the waiting area for my very first treatment I overheard a lot of people comparing side effects, and the stuff they said about bone pain scared the heck out of me, but it never happened.  Remember, everyone is different and you might not necessarily hear much about the lack of side effects sometimes