Anyone Starting Chemo in June 2016

ClarkBlue

DOLLY - you may have already done this, but can you post a link to the eyebrow stuff!!? Would love to be prepared when/if that happens 😊

-Keely

KNardo88

labscientistmom- the scarves and beanie look great! I like the look of the scarves tied off to the side like that!

Dolly- your eyebrows look fantastic! I've been a big follower of some people on YouTube who do makeup tutorials and such for a long time (love makeup!) and I'm excited to start getting creative like that-- thanks for the inspiration!

Moondust - thanks! Big step for me, so the compliments mean a lot! :-)

Mccormcindy- I'm praying for you! I can't believe how awful your experience was, I can't even imagine! But I'm so glad you had a doctor to help you through it, although it is a shame it wasn't someone from your treatment center. How scary. I really hope that the next rounds go smoothly, and that you get the care you need!

Heading out to spend the day in Boston with my husband as a "last hurrah" before I get hit by the chemo bus. I anticipate being fully functional during treatments, but we wanted to make sure we got in a good day of good food and taking in the scenery! Especially since I've been recovering from my BMX the past 4 weeks! Gonna get some stuff for the house in preparation, like Clorox wipes, lots of backup hand sanitizer, and stuff for on-the-go. Anyone find anything in particular to be particularly useful in this process??

Anonymous

Keely, do you mean the video on Youtube? If so then here you go:

This one is for eyebrows

This one is for putting on false lashes on the top!

This one is her just showing off now....as she shows you how to even make it look like you have lower lashes too. LOVE this woman!

If you want advice on kits. I scanned youtube again and found that most are using the Anastacia kits. They are a wee bit expensive, but seem to have everything included in the kits, such as templates and powders etc. She also says in these videos to keep eyebrow pencils in the fridge!!!! I have done this and it has made pencils much easier to draw on the skin as less crumbly.

Dolly

Anonymous

KNardo, I always buy Spirigel hand gel. It is again around £18 over in UK....not sure what that is for you. But it is the stuff they use in hospitals over here and you can buy it online. I have been using it and also having visitors use it too. You can buy it on Amazon.

In fact my visitors (really only close family and one or two friends all wash hands on arrival and use gel. Poor lambs I think they think I am nuts. I should probably hose them down in the back garden to be honest haha.

I also bought Milton wipes for going out anywhere. I went to supermarket the other day, and wiped my trolley down and then washed my hands in toilet and used gel. I am being OCD about this. But germs are out there.

I also don't eat outside at moment. I want to know exactly how everything is cooked and that everything was clean. Can you imagine some chef wiping his nose and then making your sandwich and NOT using soap and water in between??? YIKES!

KNardo, I am glad to have been an inspiration to someone at some stage in my life haha...get going with your brows and lets see pic on here. Marks out of 10 for the best brows. Mine were jut a practice one. I am sure I can do much better (fighter talk now!!!)

Dolly

Anonymous

Oh and KNARDO....Pink Bucket. Everyone has to have a pink bucket by their bedside!

bbbb

So glad I found this site. It somehow feels so much better to see and know that other women out there are facing the exact same thing I am. I have already learned so much about being proactive in my own care by reading posts from others. I was so confused about my treatment plan and the justifications behind it after my first visit with my oncologist, but after finding this website and the many discussions boards, I was able to understand things better and went back to my oncologist with questions that helped me understand what and why my treatment plan is what it is. I feel so much better and confident that I am doing the best that I can do to fight this cancer with everything I have. I start chemo next week (if the MRI and CAT scans are good - so many "ifs" with cancer!) Got to get that long list of prescriptions filled and I am ready!

bbbb

Thanks! My husband and I were just discussing what I was going to do about my eyebrows and I told him "Oh, no big deal, I know how to take care of that!" When actually I had no idea how to make no eyebrows look like some eyebrows! Now I do! Any ideas of good wigs? I tried one on yesterday and it was horrendous!

bbbb

KNardo 88 - you look great! Your wig looks so much like your own hair! Wish I lived up north because what I have found for wigs in Georgia is not so great - may be going with scarves if things don't look up on the wig front!

txrus

I just finished #3 out of 4 planned TC's this week & thought I would share my experience.

I am going to a very well named health care provider but the experience w/the first MO was, to be perfectly frank, a complete cluster.  From the point of dx all the way thru surgery, I had been told it would just be surgery +/- radiation +/- a 5 yr pill; at no time was there ever a mention of needing chemo or that the final decision would be based on an Oncotype score.  In fact, the first time anyone even mentioned the word 'oncotype' was when I was getting a second opinion @ Lutheran Hospital in Ft. Wayne, IN; first question the surgeon asked was about the score.  Took 5 days to hunt down my MO & drag that info out of him only to find out it was 23 & yes, I would need chemo & even better, he'd had this information for a week at that point but had made no effort to contact me.  He is now referred to by me as 'dufus' & is no longer involved in my care.  This is not what what I had planned but, ok, time for a new plan & since I run my own business & travel for work, having a plan is vital.

First chemo was pretty uneventful; even went shopping after!  Told I didn't need a port, which was fine, however, getting a periphral line on me is a challenge-there is only 1 nurse who has been successful in getting my lines; in fact, one of the other nurses, who is called upon for the most challenging patients, took one look at me this week & said, 'Nope...I can't get her' & walked away.  Did not know about the mint trick during the flush-highly recommend it now, though! 

I had a bad experience w/steroids 2 yrs ago, for another health issue, so I was adamant about no steroids period, which the new MO is ok with. Unfortunately, I had a bad skin reaction to the Taxotere w/round 1 so MO was adamant about doing a low-dose steroid flush before & after the Taxotere in order to prevent it from happening again.   

Did not have an issue w/taste buds for round 1, but did for about a week with round 2, & am having it again this week.  I don't mind not being able to really eat (there's LOTS of reserve to draw on!), however, I can't find anything to drink that I can stand & that is an issue since I live in the desert; ugh.  Had a few small mouth sores w/round 1, but Biotene mouthwash took care of that.

Neuropathy hit in my feet about a week after round 2, despite all the Vit B the MO had put me on, so am now on 900/day of Neurontin which has taken care of the problem quite nicely.  No problems w/my hands or fingers.  Am not icing my hands or feet during infusions.

Hair started coming out on day 14 after round 1.  Interestingly, though, I do still have hair on my head & I suspect, at this point, I will not lose it all completely.  Have lost the chin hair (yeah!), hair on legs & arms, & most of the hair in the 'nether' region is also gone.  For those in the Phoenix area who need a wig, I suggest Classy Sisters-they work with a group that provides new wigs for free to anyone w/the CA dx-just bring a copy of your bx report & you're good to go.

Have not had problems w/constipation but have had problems w/diarrhea (now have a good understanding of why babies w/diaper rash scream as much as they do; ugh).  Only 1 episode of vomiting thus far.  MO did switch my anti-nausea meds after round 1 to a 24/hr pill (who's name I'm blanking on & will blame on chemo brain) & that seems to be working well.  I actually made the mistake of thinking I didn't need it this week since I felt so good the day after infusion-won't make that mistake again :-( 

Fatigue has been an issue this week-the meds they give me during infusion, which were also changed after round 1, make me very sleepy, however, for Day 3 & 4, I was lucky if I could go 3 hrs w/o needing a nap I was so tired.  And was sleeping 10+ hrs at night. 

My skin was a mess following round 2, including my face-I got some of the Lindiskin & it helped greatly.  Just wish it wasn't so expensive.

My well-known hospital is not using the Neulasta button at my site so I make the trek back the next day for the blue juice; talk about expensive, though!!  First round, even w/Claritin on board, the bone pain was bad especially in my back & hips.  2nd almost non-existent, & this week somewhere in between.

One of the new MO's biggest concerns about chemo for me was the impact it would have on my liver-she expected my liver function to deteriorate, but the exact opposite has happened.  This is one of those times when we won't ask why, but instead just say 'yeah'! :-)

As an aside, though I had a friend w/me for the week of round 1, I've been by myself for 2 & 3 (lots of phone calls, e-mails, etc) & in a way, that's not a bad thing-don't have to put on a happy face or be good company for someone when I'm not in the mood for it. 

Still have radiation to look forward to but there is a study going on that I am apparently eligible for & instead of 4-6 weeks of daily XRT, it's only 3 days & limited to the surgical site.  I don't know all the details, but when the RO said 3 days, I told her to sign me up :-)

This is not what I had planned for my year & cannot wait to have all of this over & done with.  And yes, the decision to hold the company retreat in Hawaii is just a happy coincidence ;-)

labscientistmom

Dollydimple: that first pic is my hair yesterday. It seems thinning on top like you mentioned. There are more strands than usual each day now as I brush and wash it. I am 49 and have never put on false eyelashes either, so...go figure. I got the light blue scarf on zulilly.com, maybe you can order too? they have items for limited time, check it out. Yes, its good to see a face to the friendship. I was really impressed with your eyebrows picture, you go girl!!! My head and scalp really hurts today, I am hating this anticipation stuff.

Anonymous

Labscientist, I may very well go order that blue one of yours, as I think it's very pretty, Is Zuilly an American site?

The Lashes I am going to try, but certainly not going to risk gluing eyes shut. So if it gets really bad eyelash wise, then I will just get them done at the salon down the road for special outings. I am sorry to hear your head is hurting and yet I suppose there is not too much you can really do about it coz if you are like me you are to scared to even go out on a windy day hahah...let alone massage scalp. Some bits of my head hair are starting to come out but not a lot...I am hoping that the cold cap is just doing its job and that I am going to be able to hang on to most of it. It will be interesting to see how this works out.

Secretly, I have to say I am very impressed with my 900 attempts so far with eyebrows. Although it looks strange because I still have my eyebrows and so have been drawing in new ones above my actual eyebrow. Looks weird having 4 eyebrows. Jeeeeez this cancer malarky is one whacky trip!

Txrus welcome to the thread. You have had a rough old time of it with your care. I do hope things have settled down and you are feeling OK now. How long do you have to go until chemo is done?

BBB, I am glad you are going to give the brows a try!

Dolly

Moderators

Txrus-

Welcome, and thank you for sharing your experiences!

The Mods

Llroseworld

Hi ladies! Iwent for my first chemo on Thursday and the IV was placed when the person that handles the insurance came and said that Aetna had blocked them mixing the meds on site and I would have to have them mail ordered. It was not fun. 24 hours later Aetna made an exception and I was in the chair for real. I finished about 5pm yesterday. I had a bad reaction to one of the nausea meds and they quickly took care of me. The rest was uneventful. The nulasta shot is due to go off in about 2 hours. So far just hot flashes, tummy ache. All else is fine. Little nervous about the nulasta.... Everything is so new in this journey

krekre

Catching up with reading posts...

Llroseworld -- Holy cow! That is crazy that they would do that last minute like that with the insurance. I got denied for Perjeta... but my ONC appealed and they relented. I wonder why it has to be such a fight.

Mccormcindy - No words. So glad your son was around.

Dollydimples123 - I am so grateful that you posted those. The eyebrow thing has had me spinning. Even though I knew my hair would fall out, I didn't think about the "rest" of my hair. I learned that my eyebrows might go through a wig & hat catalogue. A copywriter told me... through a sales pitch. Didn't think it was funny at the time, but now that a few weeks have gone by... trying my best to keep my sense of humor. It might be the only thing that gets me through this.

Starting Chemo on Monday. My baseline MRI showed two more masses that hadn't yet been biopsied. Turns out they are IDC too. So, thought I had one, but I got three. Three... it's the magic number. Yes it is.

Moondust

Dolly, you don't have to worry about me! I do hike by myself sometimes, but I only go to well-travelled areas and my husband always knows where I have gone. Today I walked on a lovely forest service road, meeting a few people and a couple of squirrels along the way. I am not one of those women you read about who get lost as soon as they step off the trail!

Txrus, I know what you mean about finding something to drink that you can stand. I have the same problem. I am not in the desert but we still get into triple digits here very often. I've been making myself drink water even though I don't enjoy it. It feels about the same as doing a colonoscopy prep. You only have one more treatment to go. Must feel good to be almost done!

Llroseworld, sorry you had such a hassle with the insurance, and a bad reaction to the meds too! The tummy ache was my biggest symptom. Keep eating small amounts. That helped me control it.

Krekre, I'm in your pocket on Monday! Don't worry, you will breeze through this. All of your tumors will shortly be shrinking like the Wicked Witch!

bbbb, is there a wig shop at your cancer center? The woman at my wig shop was very helpful and picked several styles that looked okay on me. The next day my husband came with me and helped me make a final decision.

Well, not only don't I know anything about false eyelashes, but I don't even know how to paint my nails! I've never done it. Now I want to protect them from UV so I'm having my husband paint them. But they look awful! I'll try again tomorrow. I just can't sit still long enough for them to dry.

Elocea

Hi all! I am now recovering after my second AC on Thursday and wanted to share my positive experience. I had been worried it would be worse than the first treatment but I feel better this time?! I've been very focused on putting good food into my body, drinking a ton of fluids, and on all my good days I go for a walk. I'm less tired and managing my digestive issues with Zantac and Tums. However, my mouth and lips are very dry this time so I'm being more vigilant with rinsing. I can handle the trade off from being a zombie last time!

My other news is my hair is starting to go! I noticed hair 'down there' coming out when I went to the bathroom in the morning yesterday and by afternoon if I ran my hands through my head hair, I'd have 5-10 hairs in my hands every time. I have it cut short now but it still did get me a bit upset - as most every new step seems to! Hubby says I'll look sexy bald, plus my wigs won't be as hot to wear now. Gotta love the people who keep you smiling.

Everyone is looking so great with their pretty wigs and scarves! My next task is learning to draw fake eyebrows too. I appreciate those videos - I'll let you know if I get the hang of it!

Love and healing to all!!

Anonymous

Wow Elocea, that is great news that your second treatment was sooooo good. I am hopeful for my second infusion on Friday. Now that it is looming, in the not so distant future, I am getting less happy.

Hair is starting to be an issue with most of us. But it is just hair and it will grow very quickly. I am only 17 days since chemo and so only a few strands every now and then....however my 'lady garden' is starting to look like it has less and less weeds in it.

I cannot wait to be in November and have all treatments done and just be sporting a lovely wee pixie cut.

Coffee-lover

Hi everyone - when do the red and white blood cell counts start to drop? It's day 5 and I am so weak I can hardly lift my head. Family coming for fathers day and I may just sit in a chair. I don't feel sick but even typing this my heart is racing. Yukkk.

Moondust

Coffee-lover, I think days 7 to 14 are considered the low blood count days for most of the drugs given. The adriamycin you are receiving can affect the efficiency of your heart, and this might be a reason why you are feeling weak with a racing heart. I'm not sure of the timing of this. I would definitely call the doctor about it tomorrow! And stay away from the family members as much as you can so you won't be at risk to catch anything!.

Anonymous

Large clump of hair came out today...To be honest I am quite happy about this. I have had such an easy time of it on this chemo so far, that I had been starting to think the daft nurse had forgotten to put any chemo in my infusion. Now seeing this random clump of hair in my hands means that this chemo is IN my body and it is doing its thing...this makes me happy in a very weird way. FOUR days to go til chemo 2...oh how I hate it. I hate the long day in hospital. I hate the needle in my hand. I hate the cold cap freeezing my brain, I hate the steroids and the effect on my sugar levels, I hate the fact my mother will move in with me for days on end and I hate the fact that I don't even know if this will get rid of this cancer for good. I WANT to know that this is all worth it and that this B*sta*d isn't coming back. I want to be an old woman collecting my pension and knitting by the fire. Sorry for being so negative, but even I have my down days!

Will go play with my eyebrows again to cheer myself up!

Dolly

Moondust

Dolly, I'm sorry you are having a down day. For you a down day is rare. I won't even try to cheer you up. I would also hate the needle in my hand and the cold cap. I'm dreading the stick of the needle into my port on the 29th because it hurt so much the first time. But you still have two days to enjoy before all the discomfort. Once you are past the first couple of days after the infusion, can you tell your mother you can manage without her, or will she stay anyway?

My DH has left until Wednesday to visit his daughter and our granddaughters. Good, because I don't have to listen to all the TV noise, but not good because I have extra chores to do, AND I must go to work Monday and Tuesday. But after that I will be done with work and look forward to The Endless Weekend!

I thought I had a mouth sore but now I think it is just a place where I bite the gum accidentally sometimes. It has just about healed up. My other SE is a very slight tingling in my left foot, but not all the time. My weight is back to normal.

krekre

Hey Coffee-lover!!! I just went to my chemo "teaching" and they echoed what Moondust said. I've been advised to work from home days 7-14 just for that reason. With that said, I was doing some additional reading and the nadir (when you are lowest) is around day 10 for most people. Of course, that is when my best friend comes to visit from out of state. Sigh.

They also said "eh" when I asked about icing hands and feet, "eh" on the nail polish, and "oh no! why would you do that?" on fasting. I am now more confused than ever.

14 1/2 hours til go time.

Moondust

krekre, I don't think there are any official studies that show icing hands and feet help, and same with fasting. That's why the medical people will not address it. At my center they said just do whatever I want, so I am icing. I'm not fasting, though. I think I would have felt sicker if I tried to fast. Good luck tomorrow!!

krekre

Moondust-- how do you feel about the icing? Are you going to stick with it

labscientistmom

Dolly: I get what you mean that affirmation of the chemo doing its job is a GOOD thing. re: light blue scarf I bought on zulilly is made by Saco Bay. I was the one with the brown clip on it by my ear and crazed smile. the other blue pattern one is from Good Wishes. You can go to their website and request one. Zulilly only sells stuff in lots for limited times, then they aren't offered any more. Maybe they have them on other sites you can order? Zulilly has stuff posted from UK sometimes, so not sure if you can get stuff there. Please let me know what you find, I am happy to do some legwork for you and maybe send it to you from here? So sorry about your mom moving in for days, that would drive me stark raving barmy. My stepmom came to visit for my son's graduation a couple weeks ago, and keeps trying to micromanage my stuff, the organizing and cleaning of. Mom, really, I am 49!!! It is hard when people's love language is doing stuff FOR you and thats how they say 'I love you." posting a silly kitty picture to cheer you. We are having a heat wave here in Calif, was 105 today, expecting hotter tomorrow. We are headed to the air conditioned movie theater to see Finding Dory.

I have more and more strands coming out each time I comb my hair. Every day with hair is a blessing. I have had a LOT more pain in my fingertips and nails the last two days. Not liking it, ONE BIT. Got more ice packs from a friend so hope to be better prepared to keep my hands and feet cold for full infusion time. Also have a friend coming with me, so she can help. Blessings and ((hugs)) to you, and to all! My #5 chemo is Tuesday! whoo,hoo, getting it done!) A

This is my other cat, Mocha.

labscientistmom

Dolly/Angela across the pond: Zulily.com has a UK site. go to upper right corner of site, click on flag and choose your shipping location. blessings, A

KNardo88

Awwww Labscientistmom, mocha is a beauty!!!

Going back to work today for the first time since 5/18! Got the okay from my surgeons, so I'm pretty excited to get some normalcy back! Only bummer is that I start chemo Thursday so it's going to be a pretty short-lived normalcy, haha.

Krekre, I wish I had a chemo class! I've been pretty confused about when exactly my immune system is going to be compromised and how to balance my work schedule around that! I wonder if it's days 7-14 for all chemo regimens?.... I'll be making some phone calls to be sure today!

Not to scare anyone, but I heard a "rumor" that icing supposedly prevents the chemo from being as effective in whatever area is being iced? I don't think that's true, but because I am the way i am, I won't be icing anything. I'm sure I'll regret this when my fingernails are falling off..

As a sidenote, I'm writing this from my iPhone and when I was typing out "rumor" above, the predictive text autocorrected to "tumor".... Sigh

pepper43

Woke up at 3 am and couldn't get back to sleep so came downstairs, did some busywork and read each and every post on this thread seeing as I'll likely be officially joining the club on Friday with my first AC infusion (knock on wood).

Getting a PORT installed Tuesday and ECHO done same day. Taking a chemo education class on Wednesday. Onco's office will also be scheduling a kidney CT scan since something popped up on the PET I had last week and they want to be sure it's nothing (which is what my onco suspects). I'm a 43 mom to 4 kiddos ranging in age from 17-7 in a blended family. Needless to say this stupid cancer has put a serious damper on our summer...and beyond. I started figuring out how the treatment timeline works out and it's running well through Christmas what with a 20 week chemo plan, surgery, radiation, potentially reconstructive surgery depending on whether mx is required. And don't even get me started on the 5-10 years of hormone blocking therapy. I think I'll take a vodka along with Coffeelover. ;-)

This thread has been so tremendously helpful- not just for info, but for making me laugh. LJ Thank you thank you thank for starting the ball rolling. I can see the sense of humor & beauty in each one of you and it's managed to lift my spirits during an insomniacal (is that a word? it should be) pity party.

Revnet- I think we're getting Ports and starting infusions on the same day! We're chemo twinsies.

Cwhitney- you're not too far for me, both geographically and in age. 8-)

Elocea- I love love love the baseball cap with hair! I may need to get one of these!

labscientist- you rock the scarves. 8-)

Dolly- your videos have been great; your wicked sense of humor even greater. My husband's a toxicologist and has told me about the aspirin studies. He seems fairly convinced - we're going to talk more with onco about it as we get closer to chemo portion finish line.

I've decided to just bite the bullet this week and get the hair removal process over with. Silly me thought it would be a good idea to follow through on a highlight appointment while waiting for biopsy results after diagnostic mammo/ultrasound and now I'll be getting them off (I will probably envision dollar signs dropping as stylist cuts and shaves). Upside is some little girl will be rocking some pretty swank highlights somewhere. This thought makes me happy.

I plan on heading to ACS wig bank today to get my free wig. Gotta love BC swag *sarcasm alert*. I do think our insurance company also covers wigs so I can relive the wig shopping experience at an actual store and get to change up styles and colors.

Whee! I guess I should head up to shower and make sure hubby's up. Sun's up!

Jojok

Hi I'm new to the group. I'm 39 years old and got diagnosed with stage invasive ductile carsinoma. I had my sentinel and port done in Friday. Right now I'm finding it hard to sleep as I'm not usually a back sleeper and both sides were worked on. I begin chemo on June 30. Before that we are going to the Oregon coast for a few days. I'm so glad there are others on this journey I can look to for comfort

ClarkBlue

KNardo88 - I think the icing thing is more than a rumor - but so many MOs are divided on it (much like cold capping) that it boils down to individual choice. Also re: fingernails, do some research on your particular chemo regime - I know that wearing black nail polish, taking biotin/keratin, and preparing the nails will help with nail issues. Again, this is also another issue that you won't get approval on from your MO - more of a user recommended therapy - I know many women on this board have had a lot of success. I have had 2 treatments and have not had any nail pain, or neuropathy and I am using the black nail polish and nail prep (this and the Nail Strengthener https://www.amazon.com/Avoplex-Cuticle-Replenishing-Fluid-Ounce/dp/B000TBW0NA) - and am not icing or cold capping. I have also heard that nail issues can happen AFTER chemo is over so I may be a bit early with my experiences.

BUT I know this is a personal decision and it's cool to hear about the experiences of those who are (and how envious I am that they haven't lost all of their hair!! LOL).

-Keely