Starting Chemo March 2015

SC_Coqui

Welp, I am now in the Herceptin club. I just talked to my doctor's office. When they called this morning to schedule an echocardiogram on Wednesday, I kind of figured. Then later they called to move my scheduled infusion for earlier in the day since they said they take longer than usual for the first one to make sure that I can tolerate it OK. Now to do my research on Herceptin side effects. I know the heart problem one. I've got to ask my doc what my treatment will look like now and to when it will extend. I'm all for doing what I need to so I can be here for my son. I just don't want to cause my heart to have any issues and have that be the cause of me not being here.

A little bummed, but I know it's for the best.

slothabouttown

Helen is offering up her favorite toy possum to say happy Monday! Sending strong and positive energy to everyone visiting the spa this week!

slothabouttown

Helen is offering up her favorite toy possum to say happy Monday! Sending strong and positive energy to everyone visiting the spa this week!

molly1976

SC_Coqui, my doc told me that Herceptin causes heart problems in only 1% of patients, and with 90% of those who have the problems, they resolve when the medicine is stopped. I am choosing to believe I'm going to be in the 99% here and be okay. I want that drug in my body!!

SC_Coqui

Thanks Molly, that helps!

It's been a rollercoaster ride for me. Each time I think that I'm in the clear for something I get a curveball, so I'm a little paranoid now!

Jackbirdie

Sloth- Helen is too adorable! Please give her a good Monday morning scratch behind the ears from me.

WP- good luck in the chair today.

Joanna- Sorry about the curve ball. One day this will be over and you will be back to being mom with just the every day worries, which is enough!

Jackbirdie

Good News (kind of) Everyone

I heard from Shaz/Sharon this morning. She is still struggling horribly with the migraines and hasn't been on because the computer makes it so much worse. But she's not in hospital again. She wrote that her GP wrote to her MO and there is a new plan. She is back in the chair today. If the new plan doesn't help there is talk of altering her chemo.

I think her Andrew was physically writing the email, with her dictating, as it came to my personal account. I believe he has access to her regular email but not the bco discussion board. So I wrote back, asking him to let her know that we are all thinking of her, all pulling for her. And I asked if he could get on the regular email and give us regular updates since we worry so. She said Andrew had commented to her that he thought she was struggling without us. I said ditto

Msmath

carrie37 my eyes water quite a bit during the day and I have eye goobers in the morning. I still have some eyelashes but not many. I thought that could be the problem

Msmath

italychic and indygal35 how many taxol/carbo infusions do you have? I started mine today I have 12 tota

SueH58

Thanks for the update on Sharon, Katy. Isn't she about done with her treatments??? I hope so.

SueH58

Joanna, so did they go back and do another test on your tumor to reassess the HER2 level?

SueH58

So is it necessary to drink 2 liters of water during months of chemo, or particularly on the days before and after infusion? This drinking like a fish is getting old already, and I'm only on infusion 1!!!!!

molly1976

I do it every day, SueH. I just found myself wondering exactly WHY we're supposed to do this the last time I filled up my water cup, so I'm pretty much right there with you on being over it. I was complaining to my husband the other day about drinking all this water and he said, "Molly, nobody said cancer treatment would be easy," which made me laugh a lot. I GUESS there are worse things. But still, it's annoying.

Beachbum1023

Hi Molly, I drank water every day and still do 5 months past chemo! My skin has been so dry, especially my legs and feet. But thankfully I love water. But I miss my Pepsi, just one more thing cancer took from me. Great give and take, it can stop anytime.

My watery eyes stopped about a month past Taxol, but the runny nose still a problem especially at night and the afternoon hours. I wish I had stock in Kleenex!

slothabouttown

Yay!!! Katy thank you for sharing the update from Sharon! We're so lucky to have you as our conduit/cheerleader/cookie giver!

IndyGal35

Msmath, I get taxotere, carboplatin, herceptin, and Perjeta every 3 weeks for six rounds. I go back for round 4 next Tuesday. I'll be on the herceptin for a full year barring any heart issues.

Katy, I'm glad you heard from Sharon. I wish she was doing better, but I'm glad she's able to get her treatment today. The sooner we can plow through, the sooner we can be done.

I went to Subway to grab lunch to go. I just got home, and they forgot my cookies. Those freaking cookies. Those freaking delicious cookies!!!!! There was no robbery this time. This is inexcusable. If I weren't laughing so hard right now, I'd probably cry.

Italychick

SC_Coqui, my MO left Herceptin up to me because I was borderline after three levels of testing. After researching the crap out of it, I decided to do it because it is such a powerful drug, and I have no Tamoxifen or Aromatase Inhibitors to do long term since my other receptors are negative. My MO is doing a MUGA scan on me every three weeks to monitor my heart function. Some people do an ECHO instead. I have had three infusions that included the Herceptin, and other than 4 days post chemo, I don't even feel like I am doing chemo except for the bald head and legs are a little slower than they normally are. So I'm thinking the Herceptin may not have that many side effects, other than I have heard drippy nose mentioned several times on these forums. Also, a lot of people suggest having them infuse the Herceptin slower, like over 60 or 90 minutes. The protocol is to do it over 30 minutes (except for the first one), and I am thinking with Chemo No. 4 on Wednesday I may ask them to slow down my drips. As Molly said, it appears that Herceptin heart issues are different than the Adriamycin ones, and go away once treatment stops.

Slothabouttown, give that gorgeous puppy lots of hugs and kisses from me! I love dogs.

Jackbirdie, glad you followed up with Sharon, but sorry she is doing so poorly with the migraines. You would think the stupid doctors could get this figured out for her. I guess it just shows they don't know everything.

MsMath, I am doing the Taxotere/Carboplatin/Herceptin protocol, and I have six treatments, one every three weeks. After Wednesday, I will be 2/3rds done with the Taxotere/Carboplatin and then I will be doing the Herceptin every three weeks. And yes, lol, I have eye goobers in the morning, but I think I did before. I'm starting to wonder if I attribute things I had happening before to chemo. Like last night, after reading Avmom's post, I told my husband wow, my knees hurt right now too, maybe I am having a chemo side effect. And he said Theresa, I think it is more likely because you did a six mile walk today. Oh yeah, I forgot about that haha!

Sue and Molly, I started drinking herbal tea a lot too. I get sick of drinking water, and I figure since herbal tea doesn't have caffeine, that it counts too. I make a pot (I have a little Boudin pot I use), and I sit it on my desk at work and drink it both hot and cold.

Omg IndyGal35, the cookies! The damn cookies! WTF is it with people not remembering to give us our cookies! I swear that day I wanted to go back and pop that cashier in the head, and I am not prone to violence lol. I am laughing with you. At work we have a kitchen full of crap, makes me want to go find a cookie right now! Damn those cookies! My daughter and I, everytime we want to cheat and eat bad, we take whatever it is, put it next to our butt cheek on the hip/saddle bag area, and ask how does that look? Good? ROFL.

I saved half of the cookies Katy sent to me and two of them are going with me to chemo on Wednesday as my good luck charm for Chemo No. 4. Thank you again Katy – I will have my good luck charm from my favorite girls to take with me! I saved enough to take 2 to each of my remaining 3 infusions. Xoxoxo again!

Jackbirdie

Sue- I'm not sure how close Sharon is to finishing. She started the same week I did, and I'm halfway. But I'm getting six treatments, not sure if she's 4 or 6. It can't be over soon enough for her.

And about the water...ugh..I've never been much of a water drinker. It helps, they say, with getting the toxins out of your body faster, hydration is said to help with SEs, nausea, for example, fluid loss from the big D, and especially constipation I think.

I've been playing a little game with myself (what am I? An emotional 5 year old? I think so haha) I couldn't stand to look at that big glass of water. Next to my bed, where I sit in the living room, etc,, etc. it looked like such a huge task I couldn't even bring myself to sip on it. So I got out a couple of cute small glasses, a crystal wine glass, a cocktail glass. All the things I miss. I now drink out of those. I don't let them sit around nagging me. I just fill up the little glass and drink it up. 6 oz at a time. I also started juicing, and often substitute a glass with whey protein mixed in for a meal. I keep Simply Lemonade on hand and cut it with half water. I mix Simply Berry and cut it with sparkling water and put it in my cocktail glass and pretend it's a Cosmo. That way I keep some of the calories and sugar down

It all counts. Even popsicles count for fluids. I hope you can find a way to make it more tolerable. As you can see, I've gone to great lengths! Hahahahaha

BBwithBC45

Katy, many thanks for keeping us posted about Sharon. I was wondering about her long absence too.

My nose is runny, but my eyes feel very dry and blurry. I keep squinting at my computer. I have a fairly new prescription, I saw my eye doctor at the end of December and I just don't think that my eyes would get so much worse in such a short time. I've heard that blurry eyes could be a form of neuropathy and this scares me. I'm hoping my eye issues are just temporary.

I cannot look at water anymore either. I tried adding lemon juice or a splash of cranberry juice to it and it got old quickly. Now I'm adding Mio Liquid Water Enhancer which makes the water colorful and gives it a little sweetness, but anything sweet makes me nauseated. I'm trying to eat more soups hoping that it will help with my liquid intake.

ninjamary

I hate water now. It's up there with coffee. The thought of it makes me want to puke. Drinking tea and gatorade is the only way I get my fluids. I just finished my 4th DD AC. Thank God that's over. I get a 2 week break (exactly) and then it's onto weekly Taxol. I hope that's easier. I can't go through 12 more cycles of SE.

avmom

Hello, all.

Saw my PCP today, and she gave me a prescription for morphine to deal with my stupid legs and feet, so we will see how much that helps. She is great, though, and if this doesn't help she will try something else. She says that there is no way I should suffer from SEs if there is any way to manage them.

I am a pretty new patient for her as my regular doc is on a leave of absence. So far, I'm developing a serious affection for her. She has never rushed me, and listens to all of my symptoms.

AND, she had my biopsy results! My thyroid biopsy is clear! Just a benign nodule! I'm so relieved.

Gentle hugs to all.

Jackbirdie

NinjaMary-

Did you get a new charm to celebrate that milestone???

Jackbirdie

Avmom- ALL THAT NEWS IS AWESOME!!

Glad you're doctor is so cool and you like her. So important that.

And overjoyed on the biopsy results.

Phew!

Italychick

Avmom, awesome on the benign biopsy! Doing the happy dance for you!

ninjamary

Katy,

No new charms. Once I feel 100% (Wednesday) I'm going to stop in to my local store and pick one up.

Angiel

wpmoon, hope you're doing OK today. Just was thinking about you & sending you positive vibes :-)

I'm with you all on the eye thing...Mine are all crusty when I wake up and then when I rub them, I lose the last remaining eyelashes I have. My eyes are also so sensitive to sunlight these days and water whenever I'm outside. Maybe it's allergies, too?

Sallyma123

I just joined this board my name is sally I am on the same four as you. It has been exactly one week since first round. Were you sick. What kind. How long?

avmom

Ninjamary, congratulations on your 4th dd AC. I had my last dd AC on April 14, and I hated water after it, as well. Some days it took me half an hour to get an 8 ounce glass down (which I needed to swallow my daily Miralax dose). I drink flavoured water, tea (Celestial "Bengal" is a caffeine free chai tea), chicken broth, etc. For a while, even swallowing water felt like I was consuming ground glass. BUT, it did eventually get better, and I had my first dose dense Taxol last Thursday. The nausea is WAY down, and my mouth is much less funky. I'm not drinking plain water much yet, but drinking generally is much, much easier. I'm not sure what I would have done if they had told me I needed to do a fifth round of AC. Four was plenty and enough.

Hang in there You can do this!

Trvler

Theresa: I get nervous before spa visits, too.

I have noticed my eyes being more watery than usual. I guess it's better than dry eyes, right?

Ninja: Yeah on 4th AC!!! I have mine tomorrow.

Avmom: That's great news on the biopsy! I hope the morphine helps. Be careful though. Opiates are very constipating. I am sure you probably already know that.

I too am having trouble with the water consumption. I am not drinking 2 l a day, that's for sure.

Katy: I am glad you checked in with Sharon and you told her we were thinking of her.

Jackbirdie

Sally-Welcome to our little club that you never wanted to be a member of. We will help you along the way. I'm not sure which of us you were directing your question to, you might want to specify. Also, if you haven't done so already, go to your profile and put in your dx and treatment info and make it public. That way if you ask a question we can refer to your exact situation in your signature line and we can be more helpful. Not because we are nosy

Someone will always be here to asset questions and hold your hand.

Looking forward to getting to know you, just wish it was under different circumstances.