September 2013 Chemo Group

Prayers going up for Allyson and her family. Hoping she finds her miracle.

Oh no Michelle! Prayers to Allyson for sure! I hope that they find something for her; a miracle drug. I suppose I am glad to have Herceptin on my side, with it being a "miracle drug". It has already shrunk my tumor with just one round. Heart issues are a known side effect though and with already having them it is scary. My blood work came back iffy yesterday indicating some damage. It was liver levels but the one enzyme (that was more than double the high range) is the one that they check to see if you have had a heart attack. It also indicates tissue damage inside the body, so maybe it is just the chemo working really well? Onc said he "wasn't sure" why they were that high. I didn't like that much. Anyone else have this? I Not cool when I have to have infusions every 3 weeks for a year. I may need a new heart after this, but I guess it will be worth it if the cancer is gone for good!

I am sooo behind but I breezed through. Looks like everyone is doing fairly well? Are you over your cold yet JellyK? I am so very scared of geting sick. All three of my kids had colds (two were bad enough to end up with ear infections) and just as they were getting over that, they got sick again with my daughter having a fever and vomiting. Guess I didn't get the flu shots early enough. 

Hair: I rocked the bald yesterday during treatment. I can't afford the cold caps and I figured it would help with some of circulation restriction and keep the Taxotere away a bit. I talked to my onc and he said that he wasn't worried about permanent loss with me because I am so young and wasn't already losing my hair. I really hope he is right. I just don't think the Taxol will work for me because every 3 weeks is hard enough to arrange as it is with three kids. I wouldn't be able to fast either - and that alone is said to help with hair loss/damage! I will just keep on and hope for the best! 

I had round two yesterday with having fasted for a little over 48 hours before hand. All went well and my blood pressure didn't fall too far like I had been afraid of. The first 24 hours of fasting were bad, but after that not so much! I have been drinking about 80 ounces of water a day. The place that I had called about the trial said that they allowed for 200 calories a day so I have been eating an apple and a half of a banana, too. According to Google that is about 200 calories lol. the Carboplatin hit me pretty hard  right away and that didn't happen before. It felt like my whole stomach was rumbling and I was about to have diarrhea but nothing happened. I got the heartburn right away and think mouth sores started before I even got home! Both sides of the very back of my mouth really hurt and I have been using the Biotene. The heartburn and diarrhea feeling are gone now though, which is good because the heartburn was vicious last time. It may come back when I start eating again though. My plan is to do a liquid diet for the 24 hours after infusion was complete yesterday to really ease into it, especially so as to not stress my liver more, and then probably just fruits and veggies and stuff for the next 24 hours and then back to eating after that. I have lost 7 pounds as well, so hopefully this will help with the 15 pounds I gained last time. I don't need to be carrying around an extra 100 pounds when I am done with this; that is not good on your heart either! I really do think that I feel better than the last infusion though. I have more energy than I did and my memory is better. Looking back on last time, I dont' even know how we made it through because it was a complete fog! All this in spite of not eating for 3 days, I would say I am doing pretty well. I will keep you all updated on the progress over then next week!

Most Herceptin heart effect is reversible, Adriamycin - not so much.  There is some thought that infusion time is important in running Herceptin, both for regular side effects and heart-related.  My infusions were 90 minutes during chemo.  Once chemo was done they infused faster since I had no other chemotherapeutic agents along with.  This was a mistake for me - I had an enormous amount of hip, leg and back pain on the first Herceptin-only infusion and it was so bad that I could not sleep in any one position for more than 15 minutes for the first several nights, once I asked to have it slowed down to 90 minutes for the rest of them, problem solved. 

mamastewart - Taxotere is filtered by the liver, Carboplatin by the kidneys.  Your onc may need to regulate your dose of Taxotere if your liver is taking too big of a hit.  It is important to understand that chemo of any kind irritates all soft tissue in the body, that is why we get mouth sores and lose our hair, and the digestive tract is the most affected. The ALT and AST tests (part of a CMP) are going to reflect that with elevated levels - it is up to your onc to determine if they are too high for comfort though.  I am not sure that Herceptin would be a problem this quickly, the CHF caused by it is usually cumulative.  Did you have an echo or MUGA prior to starting?  That is the best test for detecting the type of damage done by Herceptin.

lighthouse - sorry to hear about your friend Allyson, will be thinking of you both.

Healing thoughts and prayers for Alyson! K

vintage - it is not unusual for the steroids to cause a flushed effect on face, neck and chest for the 24-48 hours after you receive them.  I got it every time - from the IV steroids.  I did not start taking oral steroids until chemo #3, but got the flushed face from the beginning.

LHL  and BabyRuth: Sending smooth sailing wishes for #3 today.

Wishing the best for Allyson. Keeping her in my prayers.

mamastewart - echo and MUGA are interchangeable - they give the same information.  They should be doing one or the other quarterly during the time you will be receiving Herceptin, so they can track the heart function.  What they will look for is a precipitous drop in ejection fraction (heart pumping ability) or a decrease of 10% or more, depending on your initial percentage.  I like to get copies of all reports so I can see this information for myself, but not everybody likes to get bogged down in the details like I do, lol!  Because Adriamycin has more permanent cardiac effects they do not combine Herceptin with it at the same time - the drug regimens for Her2+ patients are AC given first, then TH, TCH, or Taxol and Herceptin.

KBeee - My husband's "aunt" (more like his brother's aunt by marriage but they are all close) works here at my oncology center. She just came down to say hi and had no clue I was wearing a wig. So that's good. I'm like you- to me it's SO obvious and I feel like everyone is looking at me like what does she have on her head? My chemo nurse knew it wasn't my hair because I was doing the caps and now I'm not, but she told me she really liked my wig. Helpful to get good feedback the first day I wear it! I definitely need a cap for under it though because it is itchy.



About 30 minutes more and I can spring this joint! :-)

Jellyk -Love your new saying!!

Lighthouse - My heart goes out to you & your friend. Leaning on God is the only way to go, hugs to you!!

BabyRuth and Michelle - good luck at the bar today - we are becoming pros at this. / not sure how to feel about that....

I commiserate with all you about the hair thing although I agree with all the ladies about BATcatlady - no man look to you!  I enjoyed reading your blog.  It is very weird but very warming to realize there is a personality and life behind each of us and our 'chemo talk'.  I so much value this website because I need to share and learn from all this but I also so that my other relationships don't become cancer talk all the time.  This forum allows me to vent / question / get support and then I don't need that as much from my friends and family.  I still find much of our conversations dominated by cancer but now I just sometime cut the conversation short and say 'read my blog' (caring bridge) - let's talk something else.  I just know it would be so easy to finish these treatments and not recognize my friends lives (those that live far away) because all I did the whole time was talk about myself.  Not that they are not interested but just that I am sick of talking about it / repeating myself and I want to know their lives too.  But I love this running forum and getting a lot of it out here to you who all understand!

About the hair - I am just starting to shed and it was my plan to donate my hair to locks for love.  However, while I thought my hair would be long enough to both donate and give me a 'cute' short haircut, I realized it will barely make their 10 inch requirement.  Therefore I am just going to put my hair in tiny ponytails tonight and have my fiancee get as much hair to locks for love leaving me with whatever is left .... I have no clippers.  We will see what remains but I am sure it will be crazy and I will just wear a hat / scarf / wig.  I got these chemobeanies and they are really cute (at least when I tried them on with hair). 

But my biggest concern about the no hair thing is working out.  I love to run and thankful it is winter so I can wear a hat but showering in the ladies locker room will be a little intimidating I think.  I have never been a modest person (maybe all my army time I don't know) but this is a new vulnerability that I am not so sure how I will react.  But after 10 years in the Army I am finally getting my GI Jane haircut.  Hope I look like Demi Moore!

And JellyK - definitely love the quote - I've heard the first part but not the second.  Badass Indeed!

Mamstewart - glad the fasting is going well. I had the same feelings about the first day but it sure got better.  I broke my fast with fruit and slowly ate more very simple food over the next 24-36 hours.  Just did what my tummy could handle and honestly I wasn't that hungry until about 24 hours after I broke the fast.  I didn't have any problems.  Congrats and strength to you! 

Hello everyone, I just finished reading the 25 pages of posts and feel like I know you all

I was diagnosed 8/20 after I found a mass in my breast and am doing neo adjuvent chemo (weekly taxol x12 then 4xAC).  I go for my 3rd taxol tomorrow, started 9/13/13.  I cut my hair short before I started chemo but haven't noticed any abnormal shedding yet.  I hate when people say they like the cut - I want to scream at them that it's only temporary! I feel like this has been a surreal month and if/when it finally falls out, I'll have to accept the fact that I really am a cancer patient.  I have a wig ready,not sure how often I'll use it.

I'm 42 and have 4 kids (18,14,11,3) and an amazing support system and husband. 

I had not been on the internet too much trying not to scare myself, but I'm glad I found this so I can compare how I'm doing with others on the same road.  My main side effects are 2 days of being wired by steriods followed by 2 days of tired then 2 days of semi-normal.  I feel like I'm light headed/dizzy and have tingling in my extremities that is usually all over my body Sunday night.

How do you count days? Is infusion day = day 0 or 1?

Anyway, hello and thanks for all the advice I've already read

Welcome Knightzoo, I am 43, and I have 3 kids...so a year older, and a kid behind (but it'll stay that way...we are done with 3!!!). I am also blessed with an amazing support system...more than I deserve! My MO counts days with infusion day as day 1.



LHL- I hope your next few days have minimal side effects. Glad another one is crossed off the list for you...one step closer.



Josgirl - I hear you about working put. I also really like to run. I was out today and as much as I HATE cold weather, I was wishing it was cold so I could just throw a hat on my head (remind me I said that when it is negative 10 in a couple months). I was actually about 4 houses down the road when I realized....ooops, my head is bare...I went back and got my halo wig and hat I use just for walks/runs. Usually if I workout inside it is at my work (a fire department). There, I am OK with bald or just a skull cap, since they all shaved me. I do go to the Y sometimes though, and have also been thinking about what I will wear...no answers yet. It is so much more comfortable bald, and even though my bald mug has been all over Facebook, I just HATE drawing attention to myself, so I am not sure I can do it.

Thank you for all of the prayers for my friend Allyson.  She has had such a rough road and it's so sad that they have really reached the end of her treatment options.  She is a strong Christian woman with amazing faith, even through all of her ordeal.  Her sons are 11, 9 and 7.

I'm so tired this time!  After treatment #2 I slept all day the next day.  This time, we got home around 2:30 and by 4pm I was sacked out in bed for several hours.  Not feeling bad, just like I can't even keep my eyes open.  Not sure if they changed something in my premeds or the exhaustion is just cumulative.  

I hope you got some good rest, LighthouseLady.  I have round 2 tomorrow morning.

Did they happen to give you benadryl to slow a reaction this time?  That wiped me out in round 1.