April 2015 Chemo Crew... Starting in April? Please join us!

littleblueflowers

Hi AndreaC, and welcome! Sorry you have to be here, but it's a great group!

ksusan

Stephmoen, that's a really good question to ask your MO. It may be that they also ran a WBC breakout and the components they're monitoring are good--mine are high or low but my MO is looking at standards other than a "normal" reference range. I would not worry about asking, though. It's important to understand where our numbers are coming from.

Lynne, you and your husband might want to sit down and make a schedule/checklist things you already know your family needs to take care of, and get an agreement from your husband that he will take care of or be the heavy for anything undone at the end of the day. That way you don't have to keep bringing up undone chores.

Chemo + Neulasta #2 + 120 oz. of fluid drunk = weighing 8 pounds more when I got home from treatment than when I went in. Yikes! No wonder my incisions felt tight! I've peed out about 4 pounds by morning, but still, yikes. Fortunately, so far the SEs are milder than last time. Sense of taste is off but no tender mucosa yet. No temperature, no diarrhea, no nausea. Sunday is when I'll know how much my bones and nails will ache and how flu-ey I'll feel. I feel a little woozy/dizzy today and my clavicle/throat hurts at the port site, but I slept and am in good spirits. I might actually get some work done this weekend!

sheshe3

stephmoen, if for no other reason, check with your MO for your own peace of mind. Did the results come from them or a separate lab? Just thinking maybe you got results before MO??? Anyway, it's nothing to toy with. IMO, you sho I'd check...

Welcome Andreac. You've found a great group for support and understanding and information.

Lynne, your call to your husband was a smart move. It can be so hard to ask for help when we as women are most often the driving force in our homes. I think it's hard for family members to grasp that even though mom/wife is sick, that it's THEM that need to jump in and pick up the slack. You're on the right track with a family meeting tonight... and also it'll be good for dh to spend a day at work with you in his mind and perhaps contemplating how he needs to move forward to help you. And he's right in thinking the girls need to do more. He just needs to be the one to enforce that.

Ksusan, looks like you're doing pretty good so far. Here's hoping continued low SEs for you and the rest of the ladies.

Positive_spirit

lemonadehk, God1st and others - can you talk about your experiences with sculpt pain. I am curious as I go in for my second infusion. Learning other people's experiences with SE has helped me tremendously.

ksusan - I think you mentioned the bio-oil, but maybe someone else did. I just started using it today and am also using it on my son's scar from a fall. Looking forward to results. You had several great suggestions - thank you so much.

Lovilynne - hang in there!! I am glad you came to this group to express your frustration. We get it! I sent out the gift for your daughters ...hope they like it. A bit of a random thing to do

And the thread about claritin!!!!! Thank you...I was told the same thing, did not understand the who SE thing and experienced bone pain after my first infusion. I started claritin yesterday.

I am prepping for my second AC infusion on Monday, April 27. My first one was scary due to to the anaphalactic reaction to Taxotere, so I have some remnant anxiety.

I have a kid question: my son (10yrs) is experiencing a lot of fear of death (I think trauma). Unfortunately, the school is talking about bullying right now (and extreme cases), a 4th grade assigned reading involves a kid who drowned, etc... I have been practicing mindful techniques with him, like deep breathing, focusing on the reality that it's a book or it's not happening now, etc. I know this is related to my cancer, and he acknowledges that. It gets worse right before I go in for chemo. My daughter (7 yrs) just gets angry (few days leading up to my chemo). Anyone else have some thoughts about how we (DH and I) can help our kids? We will see the child psychiatry team at MGH/Boston on Monday and meet w/ guidance counselor and his teacher. Thanks.

Wishing everyone the least SE this week!

ERNurse21

well I am 6 days after TC #1 and starting to feel a little better. Fatigue & constipation (sorry, TMI) have been the most frustrating parts. I got the Neulasta shot Tuesday and it was ok. But then Wednesday & Thursday the bone pain hit like a freight train despite Tylenol and Claritin. It was more bearable yesterday and today it's just my knees and the hardware I have in my right leg from when I shattered it 4 years ago. I was pretty fatigued this week and even last night at work I had to sit down quite a few times because I just felt "out of gas". We'll see how tonight goes at work but I feel a little bounce back in energy at least for now.

Just some things I am observing. My face is breaking out like a jr high kid! And, while most of me stays cool, my face feels like the furnace of hell! I did not know about scalp tenderness until reading this board. That was very helpful to know that I wasn't going crazy as mine has been very tender to touch already. Also, while most things have just a bland unappealing flavor, I've found tart & citrusy things are still palatable. Fruit & yogurt smoothies or parfaits have been very helpful in being able to eat & keep food down.

Lynne, I'm divorced but a single mom and, while my kids are generally helpful, they need some reminding every now & then. I just hate waking up in the morning to dirty dishes. I also hate the eye-rolling and groaning when telling kids to do household chores/responsibilities. I had a BMX before chemo and I sat down with them & told them I was going to need their extra help for a little bit while we're kicking cancer's butt! They still need reminders every now & then but they do pretty well. Plus it lets them feel like they're participating in the fight.

Positive Spirit, one thing I found very helpful with my girls (13y & 10y) was a couple of books that we read through together. For my teen, we got "Someone I Love Has Cancer & It Sucks" and for my 10yr old we got "When A Parent Has Cancer". Both books work on their age levels to open a dialogue and teach them coping techniques appropriate for their ages. I also informed their school counsellors & teachers and they have been very supportive & encouraging to my girls.

Oh and those that posted pictures: gorgeous!! I loved seeing all your beautiful smiling warrior faces! Keep up the fight ladies! Praying for eviscerated cancer cells & minimal SEs!

Stephmoen

my doctor called me back about my low wbc count and said it's normal for 7-10 days post chemo the wbc to fall which I know but I didn't think that much and to go to the er if I develop a fever..that's great. Then I asked if I can get a neulesta shot after next treatment she said she doesn't like them because of the side effects well I would rather deal with bone pain then in the er with a sever infection soooo I'm pretty sure on our next visit I will be requesting a neulesta shot it sounds standard I don't understand why she won't give it I have 2 young kids at home

KBeee

Stephmoen, My exMO said the same thing to me last time about the Neulasta...side effects, me being healthy, blah, blah, blah...then I ended up in the hospital for 4 days with a neutropenic fever. There was no reason for that to happen; when you are that low you cannot fight anything. That is not fai rof them to gamble like that.

ERNurse, I try to involve my kids in things too; it gives them a sense of empowerment and independence. I always remind them how much it helps me and I appreciate it,

Positive spirit, good for you for reaching out for help for your kids. I just try to keep things as normal as possible for them and involve them when I can. They got to have my head into a mohawk and paint my head like an Easter egg. When else would they ever get to do that (hopefully never)? I try to just let them have fun. Since we are not taking a big family vacation due to weekly Taxol, they each get to plan a 4 day weekend getaway. They are totally excited about planning this. It is something I should have done befoer, but never got to, so I am glad we are doing it. Anything special or fun you can do will make it memorable in a good way for the kids.

ksusan, hope you are feeling good.

Little blue, how are you feeling?

Andrea, Welcome! Sorry you have to be here, but we're glad you've found us. You have found a fabulous group of women here to share this crazy journey with.

Lynn, You do not owe your husband an apology. He needed to hear it and he owes you an apology big time. I sometimes have to spell thing sout like that too and just lose it fo rhubby to understand. He's a brilliant man; just sometimes needs to be reminded about some common sense things.

Karen, I hope you're feeling better. I have a chronic sore throat throughout most of chemo. I realized halfway through last time it was heartburn. I need to up my meds this time. If you have other side effects, that is not the culprit, but if you have a sore throat that seems to hang on, it may be a contributing factor. Sorry you missed your ACLS class. I just happened to recert mine a couple weeks before my recurrence because there was a class nearby; ended up being good timing.

Allicat, You are sooo right on needing to speak up!!!

Mamajen, So glad to hear you are feeling better. I take Zofran during the day and add Compazine only at night and only when needed because I would rather keep a clear head and it makes my mind fuzzy.

Lemonade, I had not heard she's a BC survivor too!

I hope everyone is having a great weekend with minimal SEs. I got called in to work tonight and was thrilled to feel good enough to be able to work a duty shift and not just on call. Working the overnight, but we can sleep if we are not busy. Enjoying the feel good weekend and hoping it continues. Then Monday blood work and MO appointment with chemo on Tuesday. I will then be 3/4 done with AC. My friend who I've been scheduling my chemo times with is having her last Taxol that day, so I'll bring her flowers, a balloon and some cake balls I just made. Looking forward to her celebration, and looking forward to doing the same in 4 more months. This first month has gone surprisingly fast. Hoping the same for the next 4!!!

ksusan

When I got out of the shower my hair was falling out big time, in strands that stuck all over me and were hard to get rid of. My remaining hair was stringy and uneven like Gollum's in Lord of the Rings, so I trimmed it down to about a centimeter with blunt scissors. I'm sure it looks hilarious in the back, but I'll have my partner clean that up it later. I was just happy I could raise my arms and flex enough to cut the back at all--I couldn't have done that a few weeks ago!

littleblueflowers

i am so in awe of you ladies who manage to add children and work to all of this chemonastyness! How in the world do you do it? I hope everyone has the energy to get their weekend off to a good start and do some things that make them feel good!

Kbeee, nightshift? Really? What vitamins do you take, or has chemo really turned u into a super hero? The last time I felt this crappy, I was a nightshift dispatcher....lack of sleep really worked me over after a while!

Ernurse, have you ever tried sennalax tea? One cup the day after chemo seems to get my pipes unclogged...

Wow, what a day! Actually feeling pretty good...able to do normal stuff around the house here finally since Thursday chemo. Thursday afternoon and Friday seem to be my really bad days...I don't get the steroid buzz so many of you talk about, and can only lay around munching ZCA and trying not to barf. I may ask about moving my treatment to Friday if this pattern continues when I go back to work. Neulasta flue starting but not to bad, and not to chemonauseous today.

Just picked up my new used vehicle today...my old Subaru actually blew up the day before my first chemo. Talk about a downer. But, new to me Nissan pathfinder! Long may she drive! Also found out we may be able to close on our new house on the 4th! I'm so excited but where to find energy to move? You energetic ladies out there, what are your tips? As excited as I am, the thought of actually doing it makes me want to cry! May the force be with you all, my sisters!

allicat1214

I agree with little blue flowers....don't know how y'all do it with little ones.

Two days of my hair hurting like when a ponytail holder is removed and my hair starting coming out big time on Thursday afternoon. By today it was all over.

My daughter goes to college 6 hours away from home and we decided to meet up for the weekend at the mid-way point in a town 3 hours away for each of us. My hair was falling out like crazy so she cut and shaved it for me. She's going to be gone all summer so I won't see her until my chemo is done. This was a special bonding moment for us. We had a great time.

slv58

Allicat, you look great and I'm happy you were able to share with your daughter. I know how hard it is to be so far apart from them, my daughter moved across the country after coming home to look after me post surgery. It was a very special time between us. I love the styles she gave you, she's very talented!

mamajencoz

Any one feeling burning hotspots on your hands and feet? They feel cool to the  touch but burning to me. Day 6 from AC infusion #2

GingerChi

Love all the pics posted lately.....you all look great!! Love all of your smiles!!!

Lynne, I felt exactly the same way when it came to food. Nauseated and no appetite, but once I started eating, I could eat surprisingly well! I took Zofran for 2 days after treatment....by then the nausea was much better, tho I still didn't have much of an appetite and my abdomen felt sore. Day 5 after treatment, my appetite was back in a major way!!

I take Claritin regularly for allergies, so I take it daily this time of year anyway. I was fortunate... had very little bone pain after Neulasta. Mainly my back hurt, in the ribcage area for several days, but I was more achy...not severely so tho!

Week 2 after AC#1 was great! I felt so good, walked my dogs every day, worked in the yard, etc. That is until Friday..... I just felt tired and off. I had an appt with my MO for a check up on Friday anyway....all my blood counts were good so she cleared me for AC#2 on Monday. Of course on Friday night, I started feeling like I had a UTI! Yesterday I phoned the on call Dr at the MO's office. I had no fever, so she said could go to a walk-in clinic or the ER. I picked the walk-in clinic. The tests came back clear, but the Dr put me on an antibiotic for 3 days to be on the safe side, and I feel better today.

So now I am doubtful I will get my treatment tomorrow....anyone have any experience with this?? Tho we've already concluded that MO's all seem to have their own way of doing things! lol

Positive Spirit, Raising my water bottle to you for tomorrow! I hope the anxiety gets better, I can imagine how you must be feeling! Go for the massage tomorrow.....and kick butt!!! )

I hope everyone has a good Sunday....with few SE!

slv58

GingerChi, I thought I had a UTI the first time I went through chemo, my MO put me on RX while waiting for labs- turns out clear and had chemo prior to results. Do you have a fever?

littleblueflowers

Jen, I felt burning spots on my hands and feet after my first AC. After my second, they seem to have gone for now. Hope yours do to!

Has anyone got lumps on their chest below the port insertion site? I have a good sized hard mass that seems to follow the rib contour. I'm pretty sure it wasn't there before the port. Also, this is my non cancer side, and I had a BMX with no reconstruction about 6 weeks ago.

ThePrincess

Stephmoen - I had the shot and day 7 (Nadir day, which is the day your counts are the lowest they are supposed to be) WBC was a 2.0 (it was like a 4.3 on day 1 blood testing). The nurse said my number was a good number for a day 7 number and didn't warrant any extra precautions - I would definitely be asking more questions about that, esp if you are around animals so much? (We have no pets and no toddlers - youngest is 8). They even approved me to goto 2 of the kid birthday-party places on day 5 and 6.

It would be interesting to see a spreadsheet of numbers and days (I would love to do more tests on days 8, 9 and 10 of my numbers and see what they are - did anyone get tests on those days post AC treatment??)

Happy Sunday everyone and I hope everyone is feeling good!!

Positive_spirit

ERNurse21 and Kbeee - great tips for the kids. It gave me some ideas for working with my son's whole classroom to make the school year better for him.

Last night, yes...it started...hair began to fall out! I cried in the shower. Crap..I don't like this journey. My DH was sad for me too, so we watched a movie together. Today my 7 year old daughter will experiment with her professional haircut on me. She has 5 choices drawn out including: bow haircut, vampire haircut, boycut, curly cut. So funny! What should I choose???? My son (10) will do the buzz cut in a couple of days when things begin to look patchy. So strange to grab hair and find it in my hand. A long distance friend wanted to skype because he misses me - I told him that it would be emotionally difficult next week, If he missed me/our family that much, he could figure out a way to come and see us.

GingerChi - I am ready for tomorrow at this minute. That might change in a few more minutes.

Allicat and slv58 - lovely to hear about your daugthers. Allicat, i love the progressive pics. My older sister won't come to be my chemo buddy because she has so much going on (right?), but my older brother is coming for several days (yeah!)

Littleblueflower - Take an amazing drive with your pathfinder. Powerful SUV!

I hope this week brings some peace and lots of self-care to all of you. Hang in there! I am heading out early tomorrow morning for AC Chemo #2 with a request for a massage.

Stephmoen

gingerchi I was just at the urgent care this morning for what I thought was a uti it has been bothering me on and off for a week I also didn't have a temp and just had some wbc in my urine..they gave me cipro for 6 days it's weird that it comes and goes I've had bladder infections before that were horrible years ago..I'm just wondering if the chemo causes bladder irritation or something

slv58

Steps own, I'm on cisplatin which is similar to carboplatin and bladder/kidney irritation is a known SE. Did they suggest drinking lots of fluids, maybe with some cranberry juice? I hope you feel better, I've had nasty infections as well when I was younger. Last night I must have been up 4-5 times to pee, hope it's just all the water I'm drinking!

slv58

Stephmoen, I'm on cisplatin which is similar to carboplatin and bladder/kidney irritation is a known SE. Did they suggest drinking lots of fluids, maybe with some cranberry juice? I hope you feel better, I've had nasty infections as well when I was younger. Last night I must have been up 4-5 times to pee, hope it's just all the water I'm drinking!

ksusan

Allicat, looking good!

Chemo affects mucous membranes, including the bladder and urethra. Keep drinking fluids! I mix unsweetened cranberry juice into my low-sugar Gatorade.

I had my least-disrupted night of sleep since the first biopsy in January. Today I weigh 4 pounds more than when I went in for this round of chemo, probably all fluid, and my incisions and arms hurt. My teeth are a little sore and I have a headache. Long bones okay so far.

I'll see if I can post a screen shot of today's hair after breakfast.

ksusan

GingerChi

Slv, No I haven't had any fever. Thanks for the info.....at least I know its possible to get my infusion! Lets hope my MO cooperates. lol lol

Stephmoen, sorry to hear you are dealing with this too!!! I hope you soon feel better!! I was given Cipro as well.

I wondered if it was just irritation since basically my bladder felt sore. I first noticed dull pain after going to the bathroom....then any time I sat down in a chair, bent over, or caused pressure in the bladder area I could feel it. I've had several UTI's in the past with similar symptoms. Its much better today, thank heavens!

At the MO on Friday, I was given a printout of my labs and I noticed my WBC was a little high....12.5 (that was day 10). I got the printout as I was checking out, so I didn't read over it until I got home, I was surprised to see it was high but figured the Nuelasta was doing its job.

ksusan, you are rockin today's hair!!

Positive spirit, you go girl and let them pamper you!! )

Stephmoen

on my way ER temp 100.9 great

thsizit7

I can do all things through Christ who strengthens me...

Well... add me to this journey please. I'm so thankful I found this site!

My situation: I am 63 yrs old, have always been healthy as a horse, had my yearly mammogram in Feb and BAM...went for follow-up, and US, radiologist came in looked at screen, said he needed to do a biopsy, did it, and I left knowing I had cancer. I worked in US for 14 years so I knew what it looked like on screen. Got my results a week later and it was positive. I am blessed to have a stepson who is an oncologist. He got me in with a surgeon the next day. We scheduled a lumpectomy and sentinel node biopsy in 5 days. Had lumpectomy, the sentinel node was positive for cancer so he removed all the soft tissue under my arm. He also removed a couple of other suspicious looking areas in breast. Path report showed the tumor margins clear, one of 10 nodes removed positive, the suspicious areas turned out to be DCIS. I have HER2 and all my hormone receptors were positive. We decided to do chemo first, then do bilateral mastectomy, while remaining on Herceptin for a year then probably Femara for five years

I had a PET Scan the next week and it showed no signs of cancer in bone or liver, but the internal mammary lymph node appeared to be lit up. So because of that my treatment plan was changed to add Perjeta. I have my first of six treatments of TPH on April 28th, two days from now, and will receive them at 3 wk intervals. I am very anxious, I think the anticipation, not knowing how my body will react, is the hardest thing for me right now. It's really scary to me to think about having "poison" injected in my body that could potentially damage my healthy organs!!! ...after chemo I will have another PET Scan to look at that IM node. It's possible I may have to have radiation, depending on what PET Scan shows at that time.

God has blessed me with a happy, always positive, personality that is sometimes annoying to certain people. I have been asked many times in my life (sometimes begrudgingly) "how can you be so happy all the time" ? I have come to realize that it is a gift from God.

My hope is that I can hang on to this positivity throughout this Cancer Journey. I am hoping that since I have always been so healthy otherwise that it will help me through the potential side effects??? Any input on that???

My Oncologist is a female and I love her! I told her up front that I wanted to know everything, no soft peddling, I can deal with facts. She answered all my "girly" questions without my even having to ask! She told me my hair is going to come out after the 2nd treatment, and wrote a prescription for a hair prosthesis and told me where to go to get the best custom wig, and to go there when I left her office, order it, so it would be ready when I need it. I have ordered it and will pick it up tomorrow. She was very thorough and informative and wrote prescriptions for nausea, sleep, etc. I have already talked to my hair dresser and set up a date to shave my head. I refuse to watch my hair fall out! I am already a hat girl, so I have plenty of hats, and I am trying to get creative with scarf tying. I have a wonderful husband who is very supportive, and I am blessed to be retired.

I know that God is with me and he will see me through this. When I look back over my life, I think he has been preparing me for this diagnosis for a very long time.

Sorry for being so long winded... I look forward to being a part of this group...learning, helping each other...together we can do this!

I can see the light at the end of the tunnel...

ksusan

Stephmoen, thinking good thoughts for you and hoping a little intervention goes a long way.

KBeee

thsizit, Welcome! Sorry you have to be here. You have found a great group to share this journey with. I have tried not to think of chemo as poison. Cancer is my enemy. Chemo is my ally against this enemy.

Stephmoen, Keep us posted. I hope your counts are good, so you can get fluids, antibiotic, and come home.

Gingerchi, I hope the bladder issues clear.

KSusan, Love the picture! Yahoo for the good night's sleep!

slv, I am up multiple times each night to pee also, but I have been drinking tons of fluids.

Positive spirit, How did the hair cut go???

ThePrincess, I agree about wanting to know numbers. I would love to see my numbers every day. I worry more about Taxol when I will not be getting Neulasta. I tended to run high fevers on Taxotere when they tried to not do Neulasta. Epic fail.

Little blue, Call your surgeon tomorrow about the lump below your port. It sounds like some thing they should know about. The house sounds exciting. When it comes to moving, you be the director in the director's chair pointing everyone to which room stuff goes in. Friends want to help...enlist all of them. I worked the night shift, but at my job, if we do not have calls, we can sleep after 9. We had a quiet night. I got paid to sleep all night. I love my coworkers. We all just banter back and forth, have fun, and it's just a really positive place. It is fun to go somewhere and completely forget about cancer...even if just for one night. Even if I am up on calls, I am taking care of others, which is a nice break from being taken care of.

Mamajen, Keep an eye on those burning spots. Could be a mild case of hand/foot. I have been icing my feet every day after my walks to try to ward it off.

Allicat, Love the pics!!!! What a special day with your daughter. You turned something which could be so negative into a very special memory.

I think my night at work gave me a great moral boost. After church this morning I met a friend, who's been my running partner for the past year. Lately, we've just been meeting on the weekends. We walk on my chemo week, and alternate running and walking miles on my non chemo week. For some reason, I felt just great today. The plan was to run a mile, walk a mile, twice, and then walk an extra mile at the end for a total of 5. I felt so good, we just kept alternating running a mile and walking a mile for 8 miles! I have not gone that far since my half marathon in October. After 6 I told her I wanted to do 2 more, because I knew after more chemo, it will probably be 6 months or more before I can run that much again...I wanted to take advantage of feeling good while I do. I was also taking advantage of the 60 degrees and sunshine. It was a picture perfect day and I enjoyed every second of being outside. Tomorrow I have labs in the morning and see MO immediately after. I go for chemo Tuesday morning. I have been scheduling my chemo days with my friend Jenny who's been battling breast cancer. She is on her very last Taxol Tuesday and will be done. I made her some Oreo balls and will bring a balloon and flowers. I am soooooo happy for her. It reminds me that as frustrating as chemo is, it is also temporary. It is easier having gone through it before knowing that my energy did return, my hair did return, and life got back to a new normal. I am looking forward to that in a few months!!!!!

slv58

Stephmoen, thinking of you, hope your fever is down and your home.

littleblueflowers

JJust thought I'd check and see if blonds really do have more fun! Although on second look this looks more like coyote fur...

littleblueflowers

stephmoen, I hope you feel better soon! Fevers are so scary!