Starting Chemo March 2015

Jackbirdie

Allison- good luck tomorrow and congratulations! 🎉🎉🎉🎉🎉 in advance for getting to this milestone. I bet it seemed like forever. You have done really well, and as I have said before I appreciate your supportiveness and always looking out for the newbies even though you have your hands full with your own dx and your family. My 👒 is off to you. Katy

INDYGAL!!!!! Here's a special something for you.....🍪🍪🍪🍪🍪🍪🍪🍪🍪🍪🍪🍪🍪 A baker's dozen. Hope you like chocolate chip!

And for everyone else today, lots of love, and Hugs. Gentle ones. You guys rock my world. Every day

SC_Coqui

SueH58 -- I've always been borderline in terms fo being Her2-. Based on current guidlines I'm considered Her2-, but from what I understand from what my Oncologist said, the guidlines have been changing and they've become more aggressive about who they treat and consider Her2+. At her weekly meeting with the other Oncologists and the Pathologists, they discussed my case and recommended that I start on Herceptin. She was never 100% comfortable with NOT putting me on the treatment and wanted to revisit my case.

I hope the treatments are not as strong as the AC. I did well with the AC but the length of time I need to be on Herceptin, I need to go on as much as possible with my normal life. Hopefully I'll still be able to make my annual trip to PR.

wpmoon

I too have a really difficult time getting fluids in. But I've found the smaller amounts I drink, the easier it is to consume. And don't forget juice, soup, yogurt, tea, Popsicles, Gatorade, smoothies, etc. count.

I'm still at the spa. Apparently my liver values were high so they had to wait on my MO to come in and lower my dosage of taxotere. No one seemed concerned since this a common occurrence. I'll just be having a lower dense treatment for the next two, and scheduling a follow up echocardiogram in the next to weeks to see where my heart stands.

Katy - so glad you heard from Sharon!

All this talk of cookies.. I think I'm gonna need to order some.

ninjamary

Allison - good luck tomorrow. What a relief to know that part of chemo is finished. I'm still feeling yecky. If #3 is any indicator I should be 100% by Wednesday.

Avmom - Glad to hear that Taxol is easier. I honestly don't think I could have done one more round of AC. I really had to psych myself up for round #4.

SpecialK

About the watering eyes - this is particularly bad with taxanes and is actually due to dryness, as opposite as that seems. Use lubricating drops, not the kind that "get the red out" but this SE, plus the twitching, will go away after you are done - it can take a couple of months.

SC - Herceptin is a targeted therapy, not chemo, so aside from the rare cardiac issues, the SE are more of a nuisance. A lot of people have a runny nose, some a mild headache (that happened for me more toward the end), and if you have nail issues they can continue. Once I moved to Herceptin only it was a breeze

Trvler

I figured out Friday and Sat (so days 3 and 4) are my worst days. Trying to plan accordingly. Kind of bummed because my husband has to go speak tomorrow in NYC. He will be back Wed night. My kids are being total pains in the butt lately. Fighting all the time. Arguing with me over everything. I had a total meltdown with my older one Friday night. Not my proudest moment at all. I keep telling them to close the blinds at night when they dress. We are in a densely populated housing subdivision and you can't dress in front of the windows at night. I told her 20 times to close her blinds THAT NIGHT and I walk into her room and of course she is dressing in front of the open blind. I lost it.

Leighrh

Allison - good luck tomorrow!! I have AC #3 Thursday and for the first time I am really anxious... maybe because round # 2 was not so great. I really don't wanna... I feel like  Bekah's daughter and her airplane trip... chemo all done!! LOL.  I should feel lucky I guess because last week and this week I really feel fine. I am just dreading those days, fri - tues that I didn't feel good last go round.  I got really down and I hate that feeling.  I know I come out of it but it's a rough 4 days.

Ninja --- WOOO HOOO all done with AC.  I am counting the days till I am done.. May 28th is my last AC.  Then on to 12 weeks of Taxol.  I know everyone says Taxol is easier but wrapping my brain around 12 weeks is tough!

On the water front... I am drinking the flavored water.. the orange is my favorite.  It's the only water I can stand.  It does have a little after taste but it gets my water in.  I also drink Fresca for the few days after tx... It's the only thing I can stomach on those days.

avmom

Ninjamary, I totally agree on having to psyche yourself up for round #4 of AC. I have a cancer buddy, a dear friend who has been a stage IV patient since 1992. He is my "go to" driver to chemo treatments. Usually he calls me the day before, to talk through my dread of the next treatment. He says that he drives me to make sure I don't take a wrong turn, "get lost" and miss a treatment. He is the most amazing friend, and has been through more cancer treatment than all of us put together, some of it incredibly awful. He is a constant source of gentle, nonjudgmental encouragement, though he has been busy for the past couple of weeks. We are having a provincial (like a state) election tomorrow, and he has been working for one of the local candidates. The only thing I have to do tomorrow is vote, and I should be able to manage that, with or without morphine. One x in one box.

I'm sending healing thoughts to everyone having a spa day. (((Hugs)))

Trvler

Ninja: I get kind of down those days, too. Are you doing any exercise at all? It really does help. I am very proud of having worked out every single day this cycle except the spa day.

Av: So nice that you have someone like that. I have friend driving me to each treatment and last time I just cried when I got in her car but she didn't really know how to deal with it like your friend. Can I borrow him?

neverthought

Always something new and different:

Friday - very itchy rash neck, ears, knees, elbows, better now.

Today - skin peeling on feet but not hurting - is that anything to worry about?

I am so embarrassed to keep asking the MO only to be told "it's normal".

Jackbirdie

Allison- I didn't realize you have worked out every day this cycle! Good for you!

Avmom- I think we could all use a friend like that. I'm sorry for his suffering and amazed he still has the energy and desire to help others! Especially you, and I want you to pass him a big hug from me.

Beachbum1023

neverthought, nothing is "normal" when it comes to chemo, not what we think of as normal. The MO works for you, ask all the questions you want. I just hope that you get some answers! Keep your feet slathered in moisturizers and wear soft socks. It helps. Mine only peeled for two weeks and the moisturizers seemed to help.

Jackbirdie

Leigh- you and I in the chair Thursday!

Neverthought- I have peeling open blistery skin on my fingertips and feet bottoms now too. It is a known SE. I am treating with tea tree oil and coconut oil. It doesn't really go away, but it doesn't hurt and at least stays a bit more supple. Grrrrrr

neverthought

Thank you Beachbum and Katie.

I think I worry too much, but what is normal now would not be normal in my previous life.

eheinrich

wpmoon - thanks for posting about the liver enzymes. I just got my blood work done and one of mine is really high. Of course I hung out w/ Dr Google for a while and am concerned but I'm a bit reassured now. I will up my fluids and see if that helps. My blood counts are really low again - lower than last time. I don't get it, I do Neupogen shots during week 2. Even though I hate spa day I hope I can do it. I just want this all over with. Last round the fatigue was super bad so today I've been taking care of things like my pretty gross floors, cooking dinner for tonight and tomorrow, stores.

Jackbirdie

having had elevated liver enzymes ( both ALT and AST elevated up to 3 times the high normal) for the last year and fighting to get them down and stay down during chemo I can say this.

No Tylenol of any kind right now. Very hard on the liver

Gabapentin also hard, as well as many other OTC and prescription drugs. Some of my psych drugs were issues. Only take what is absolutely necessary until finishedwith chemo.

The juice of a fresh lemon in warm water every morning will help to cleanse your liver. So simple, but not pharmaceutical!

Good luck to both of you.

IndyGal35

Forgive the long post, but I got a lot of good info this morning.

So I had an midway appointment with my BS today.  I asked her about getting a full axillary dissection instead of a SNLB since my PET showed "some" lymph nodes firing at a score of 3.  She said that she just got back from a conference in Orlando last week, and the research still says that a SNLB is the best course of action.  She said that they will sample between 4 - 10 lymph nodes during surgery and that the pathologist will cut them in half and review them with a frozen section while I am still out cold.  I asked her, "What if there are still some cancer cells that traveled to a remote lymph node, and you guys don't sample it, so you don't know it is there?  What if you don't get it?"  She assured me that radiation will get anything that chemo could have possibly missed.  While I trust her professional advice and know she would never put me in harm's way or be negligent, it is so hard to put your life and future into someone else's hands, no matter how capable they may be!

While the size of the tumor hasn't changed too much, you can definitely see the change in density.  The pic (left) from my diagnosis in February shows a very dark black mass.  Today's image shows a hazy, gray blob that is starting to blend in with normal tissue.  The chest wall is still clear, and the tumor is beginning to pull away from the skin a bit too.  While I'd love to see nothing there, I think that this is good news considering the size of my original tumor (5 cm primary mass, 2-3 cm satellite mass, 2-3 satellite mass, 1 cm inconclusive).  Basically, the entire right side of this 36DD twin cannon was malignant.

My BS is supportive of any decision that I make, but she did encourage me to talk to the PS about options again when I visit him on Thursday.  I tell you - I'm still leaning strongly against reconstruction surgery, but she said that reconstruction won't delay the timeline for radiation at all.  While my family and friends have been supportive, I can't believe the social pressure that I feel.  The road to Hell is paved with good intentions, but I am so tired of fielding questions like, "What if you regret it later?...Don't you think it'll be weird looking in the mirror and not seeing anything there?...Do you think you can handle that psychologically?"  I've never seen so much fuss over a pair of boobs in my life.

I hope this brings you all comfort since I know we have all been so worried about whether or not the chemo is working.  Just because we can't feel it doesn't mean it's not doing its job.  The BS said there are many theories about how chemo works.  It could be poking holes in the tumor like swiss cheese. 

Oh - and I asked about the IORT, but I'm not a candidate.  They can do radiation during surgery, but there are requirements including tumor size (I believe she said it has to be less than 2 cm) and slew of other criteria.  Still - it couldn't hurt some of you to ask about it to see if it would be good in your case!

 

Trvler

Thanks, Indy. I have concerns that mine isn't working. I would even say it might be bigger than before. But I haven't had any imaging.

SueH58

Hi Ladies

Went to the garden center today and picked up this gorgeous Impatiens plant and ALSO, some mint plants. I thought I could add fresh mint to my tea or water to help up the intake. Just an idea.

Hope you all have a sunny rest of your day!

Sue

Carrie37

Re:fluids, my friends from work bought me a water infuser pitcher before my first round of Taxol. I have only made strawberry with lemon but it sure made water taste better. I have been horrible at drinking enough fluids and I normally love water. Indy, thanks for the update and info. I feel like my tumor has stayed the same although my doctor felt and said it is softer. How does she remember? Anyway, I don't understand why I haven't had more scans or some idea of whether or not the chemo is doing its job. My BS said it will work. She is so confident. Me? Not so much. I don't get the fuss over your surgery or mine for that matter. Allison, I hear us about the arguing with the kids. Mine argues all the time now! No he doesn't. Yes he does. Ugh!!!

avmom

Trvler and Katy, my cancer buddy is a gift in my life that I am thankful for every day. He always knows the right thing to say or do to get me back from the abyss, whether it's just bringing a snack to eat in the car on the way to the spa, or a deep conversation about life, death, and the way through it all. We were good friends before my diagnosis, but now... We may not be besties because he is important to so many people, but we will be friends forever. I hope that each of you finds a secure support person.

Indygal, I didn't feel social pressure about reconstruction because my mastectomy was only 6 days after diagnosis, but I'm having a prophylactic mx on the other side, and have a reconstructive consult later this month. Everyone just assumes that I will do reconstruction, and maybe I will, but I have many questions for the PS before I decide. The effect of radiation on reconstruction options and outcomes would be a big factor for me.

Right now, I'm not particularly troubled by having only one boob. If the second mx wasn't recommended, I can easily imagine living lopsided. After my diagnosis, one of my neighbours called for a long talk. She had a uni mx four years ago, and finishes up with Tamoxifen next year. She just did a reconstruction consultation, and has decided against it. Doesn't want to sign on for any extra surgery, and she finds living with a prosthesis completely acceptable. She says she has a bunch of cute swimsuits for vacations, her husband couldn't care less, and no one else has to see her chest. She is feeling well and enjoying life.

It is your body, and reconstruction is your decision. Even at its simplest, it means more surgery. Only you can decide if that is right for you, or if it is right for you at this time. Immediate reconstruction is not mandatory, or the only way to go. My wish for you is that you find the time, and the space, to find your own truth in making this important, PERSONAL, decision.

Courage to all.

Angiel

Thank you IndyGal for your post. I, like Trvlr, have doubts about my chemo working. I haven't had any more imaging done since the initial diagnosis but they have been measuring it simply by feel and it remains 4.5 cm; however, the node under my arm is gone. It just makes me fearful that I am doing all this chemo crap and then the end result won't be anything close to what my MO had hoped for. Your post is inspiring.

As far as water intake...I love my Sodastream and make plain club soda all the time - an add a slice of lemon or lime. My fave go-to cocktail pre-cancer was a vodka club soda, so this was an easy solution that still tastes good to me. Just another idea.

Trvler

I drink LaCroix but with the carbonation it is hard to drink a lot of it.

rleepac

I don't even have the psychological strength to respond to everyone but I'm reading everyone's posts and I'm still here. Just exhausted...

Bekah

Jackbirdie

Avmom- Very eloquently said. Nice post.

Sue- way to go getting some pretty flowers. Nice photo too!

Angie, Carrie, Allison, Indygal- I cannot imagine the worry. Having the evidence still in your body must drive you nuts...and the wondering and worrying. I wish I could make it go away. Your doctors all have, no doubt, many experiences to draw their optomism from. And Indy, how different that scan looks indeed! I know they are expensive, but it seems more mid-flight scans would be good for peace of mind and allow for mid-course corrections. I don't think I truly understood before how very different you must feel going through chemo first. Now I think I get it. Every day I learn more about what I don't know. Today I learned a lot

wpmoon

uh oh. now i'm freaking out about my liver levels. the AST and ALT are through the rough. calling tomorrow to set up the echocardiogram. I guess I couldn't escape this journey unscathed without some medical issue arising.

Italychick

wpmoon, how high are they?

eheinrich

WP, I have gotten my liver enzymes tested frequently before chemo due to all of my psych meds. They had been very steady until after my first round when they increased. After round two my ALT is really high. Is there a connection between those and your heart? I'm not allowed to ask Dr. Google.

wpmoon

AST is 122, ALT is 138. I'm not sure if there's a connection to these levels and my heart, or if my MO just simultaneously realized I'm past due for another echo (my last one was in December). I have to call tomorrow to set up that appointment.

All I know is that I saw my MO stomping through the infusion room rather quickly to go talk to the pharmacies about my meds and decreasing the dose. For now they said that's all they'll do for the next two, but I'm sure that'll depend on the results of the echo. Fingers crossed this doesn't change my chemo plan too much. I'm ready to be done.

Italychick

wpmoon, one thing you can look at is a substance called n-acetyl cysteine (NAC). It has antioxidant properties, so probably shouldn't be done around chemo infusions, but it is a substance used by hospitals when people come in with Tylenol overdoses to deal with liver issues. I take it, along with milk thistle for my liver. Milk thistle also has antioxidant properties, so same caution. I had fatty liver about four years ago, and it reduced my liver enzymes down to 15. I don't remember what I started out at, but both were pretty high, around 100 I think. Hopefully Jackbirdie will chime in here because I know she has had liver enzyme issues too. I quit taking it for about 9 days around chemo infusions. The good thing about the liver is it has amazing regenerative properties. The dental assistant I use had bile duct cancer, and they cut out 50% of her liver, and it grew back to 80% in size.

I am so sorry you are going through this, but remember, the liver has amazing regenerative properties. You can pm me with any questions. Hang in there.

I don't understand the 4 vs. 6 infusions, and have actually started a post on this site asking why. If I had done Taxotere/Cytoxan, the Mo recommended 4 infusions. With Taxotere/Carboplatin, she said 6. Cytoxan and Carboplatin have the same effects, so I still don't understand the difference, other than supposedly Carboplatin makes Herceptin more effective, which is why the standard of care is for six round of Taxotere/Carboplatin. But I plan on having a discussion with my MO about this issue.

Your MO should be measuring heart function every three months, so I don't know why you were allowed to go so long.