Anyone Starting Chemo in June 2016

SthrnYankee

scared67- I have not started yet but met with my Medical Oncologist a few days ago & was able to ask alot of questions as we were planning my treatment & when it will start. My MO told me I can drive myself, but need to bring someone with me to the first just so he can prove to me that everything will be OK. I have my medi-port put in Tuesday & start chemo before July 1 is my understanding.... starting to freak out myself.

DancingElizabeth

Hi SthrnYankee...I'm getting freaked out about this too. I still can't believe this is my life now...... I've always been so healthy......until now

LJ2016

Hi ladies, I'm on the other side of chemo #1 and here's how I feel. I have a dull headache, but really very mild. My upper abdomen aches very mildly, but I feel it when I bend over. No nausea and not mouth pain at all.

^{Overall all, my first experience was so much better than I anticipated. The lidocaine for port access did he trick, didn't hurt AT ALL! Kathy the Kind nurse was so informative and helpful. She explained everything and was there the whole time. I fell asleep with the benedryl. I've been asleep for past 4 hours, but did wake up enough to eat a delish parmesan chicken and rice and some fruit a friend brought over for dinner. I'm not hungry at all now, but am making myself drink lots of water. TMI alert: the first time I peed, it was decidedly pink (appropriate for breast cancer awareness ;0) but second time, it's barely pink at all. Here is a pic from today. Please don't be too fearful of starting...it can be much better than you feared and you've wasted a lot of energy on something that didn't happen. Hugs to all....nighty night.}

LJ2016

PS....I also got a Neulasta pod when I left. I will get it with all 4 Adriamycin/Cytoxen AND with my 4 Taxol treatments too. I can't post a pic for some reason, so I will try from my computer tomorrow. When it's activated, theres a feeling of being popped with a rubber band, but other than that, its not bothersome. After 27 hours it wll start beeping an then the meds will be administered over 45 mins. Then you take it off and throw it away.

labscientistmom

Scared67: if you get benedryl, believe me you do NOT want to be driving. So sadly, the day of infusion, you gotta get a ride. There are a couple good websites for setting up rides, meals, help etc. You can recruit friends, church friends and family to sign up to help.

My friend set us up with MealTrain, but I think there are a couple other recommendations on the Tips for getting ready for chemo board.

labscientistmom

Scared67 and SouthrnYankee: I will pass on what I read on one of these boards recently: focus on the goal, we are cutting out the cancer, and we are bombing it with chemo & rads to kill every...last...little...alien...parasitical ....seed....dead, Dead, DEAD!!! so it never, ever comes back. Fight on dear sisters, be intrepid little turtles, take one day at a time, slow and steady wins the race.

I did my CAT scan today, it was easy, and they even dragged a physician from the urgent care next door to put the IV in my port, yay! I did round 4 yesterday, one month done! 4 more to go. . .sigh! ok, pep talk over, hope to sleep more better tonight.

Acie

I start the last week of June. Triple negative, grade 3 IDC. Trying to keep a good attitude but honestly pretty scared and dreading the chemo,

DancingElizabeth

Thanks Labscientistmom for your kind words and advice! I LOVED your pep talk!!!!

Acie - I have my very dark moments of fear - as well... These ladies are a wonderful source of support.

richajune

I have been diagnosed with similar conditions...T2N1M0, 2.2cm tumor, Grade 3, NOS, triple negative, 1/21 lymph node...... underwent a breast conservation surgery (WLE) and lymph node removal (21 node right Axilla) due for chemo in next week ~ 23 June.

8 sessions of CT ( 15 days frequency) followed by 5+1 weeks of RT

I have been recommended a test for BARCA1/2 and PALB2.

If anyone is aware that is there any implications in terms of treatment plan or is it for informational purpose.

Anonymous

Morning All from Scotland!

First of all LJ, well done you for getting that very first chemo done. It sounds like your experience was a pretty relaxed and good one. You certainly seem very relaxed in that photo. I am really impressed that you actually managed to have a photo taken during your infusion haha. I had a picture taken with my cold cap on two weeks ago but was so distressed at how bad I looked and how white and cold I looked that I deleted it. What a pity I did, as we could all have had a laugh at it. It was not a good look! Your SEs sound pretty unremarkable too. How boring are you?? haha. But seriously, that is great that you are just feeling a wee bit sick and tiny cramps etc. It sounds pretty much like the symptoms I had too. I am guessing you will be up and about in no time doing normal duties again.

Scared, Labscientist is absolutely correct when she says that you need to be positive and get through this slowly and know that this treatment is to make sure these wee cancer cells are DEAD, GONE and BURIED. We were ALL healthy before this. Labscientist refers to this as our lives being 'hijacked' and I think that this is an absolutely excellent description. None of us want to be here. No offence ladies, but I wish I knew none of you haha!!! BUT we do all know each other and we now need to be thankful of each other and this support and use it to get us through this and to get us back to health and normal life. If I am honest, I think with me it is the fear of recurrence that is the big thing. I know the docs can get rid of this in next 6 months, but I am not so sure if they can keep it away completely...but then neither does my mother know if she is going to NOT get cancer in next few years, or my neighbour, or my work colleague or the teenage lass that bagged my shopping yesterday in the supermarket. The point being, we are cleared of this and then start from a fresh point again and with good monitoring from breast clinics and eating well and cutting out alcohol (I am a real supporter of this due to recent studies about alcohol and links with BC) and taking supplements and losing weight and exercising we should be able to control this. And always remember this....this is 2016, GOD is good and I know a definite cure will come at some point for this condition. They are working on it now. It's just a matter of time.

Labscientist and Moondust, I really liked these videos. I have to admit that I hit Amazon again and bought up brushes and dark brown eyebrow kit and sealer (I have never sealed my eyebrows in my life??) Then watched a totally different video and they were using Anastacia kits at around $80!! They seemed much better as they had markings on the stencils to show you were to put the eyebrow. I bought stencils but not ones as good as this and so think I am going to end up looking like Coco the Clown.

But it will be fun to try and figure out how to do these brows. I am in agreement with you though Moondust in that I will never manage eyelids and glue AT THE SAME TIME!!! I will end up in A&E for sure. They never said permanent blindness would be a side effect of chemo....

Dolly....

PS I am going out to the beach tomorrow with a good pal...well if it stops raining!

Anonymous

Acie...chemo is time-consuming but so far for me, I'd say it has been a little bit of a non-event. Go in with the attitude that this is good medicine that might make you a little tired and maybe a tiny bit sickish on day one...other than that don't give it any more importance than it needs. You will be given plenty of medication to help get you through it. seriously it is not like the films make out! The worst part for me was that cold cap and the needles...YIKES. Oh and the fact that my mother would not leave my house for 5 days!!!! Noooooooooooo...in the end I had to chuck her out.

Dolly

Heathet

thanks Dolly for sharing those videos. I'm going to have to practice this! On my list of things to do is buy eyebrow pencil and shadow.

Anonymous

I have been practicing today. My eyebrows are still here so it was a bit weird to add an additional eyebrow above my own one, but it was good to use as a guide. I can really see how easy this will be. And when my mum came over she thought my brow looked very good. The powder under it and the pencil on the top really gives that textured look to it. I did however think the dark brown pencil made my brows look a bit too gingery...so I will have to up it to a black eyebrow pencil, as I am quite dark haired. I am soooo glad we have all benefitted from seeing this video.

The young girl on that video is British and she has alopecia, not cancer. So her hair and brows and lashes are never returning!! She has a beautiful face though and what looks like a lovely personality. She has a blog and Vogue magazine liked her blog so much that I think she writes for them and also did a photoshoot for them too. Good on her. Love to see someone just roar on ahead like that no matter what hits them in the life. As the Chinese say 'Fall down seven times, stand up eight'. That is what we are all doing right now...

Dolly.

Anonymous

Heathet, buy an eyebrow kit. Anastacia one seems to be the best one!

LJ2016

Here is the picture of the Neulasta Pod on the back of my arm. Funny-I watched a video about the pod and one lady commented that she left her chemo appt where she got the pod at the end of treatment. When she opened her car door, she knocked it off with the door(it sticks out a bit). My daughter and I laughed and thought she must've been loopy from chemo.

Well....today I got up and ALMOST knocked mine off walking through bedroom door. It tore a hole in the clear adhesive stuff they put over it, but the pod's adhesive is intact and it's blinking green. To be safe, I will walk through the middle of all doorways and protect it a bit better!

Icandoallthings

hahaha! Clarkblue! I started losing my pubic hair first too! I went to the bathroom and was like uhhhhhhh what the heck! I am cold capping so I have been so worried about the hair on my head, I never considered the rest falling out too. Honestly if I could target all the hair loss from my upper lip dos to fall out and stay out... I would! Lol!

Also! I lost my sense of taste... It's terrible. I ate a burrito, and almost gagged. Hot mush is never appetizing.

Praying my taste comes back. I'm 14 days pf

Elocea

I'm in for round #2 of AC. Ready to get another one over with!

Hope everyone is feeling okay today.

Love and hugs to all!

labscientistmom

Icandoallthings: I am losing pubic hair too. noticing more hairs coming out each time I comb my hair. Have horrible anticipation of it suddenly falling out in a **POOF** in some really embarrassing public place, but I am so not sure how realistic that is. What makes it only come out suddenly at night, or in the shower? I will be glad when its just done and falls out, and celebrate each day with hair remaining! Yes Dollydimple, I will send you pics tomorrow of my hats! I promise!

Fight on ladies, you can do this, we are all hanging with you!! For those new triple negative diagnosed, Acie and richajune, check out the big TNBC study that says with chemo the recurrances go down after 3 years, down more after 5 years and almost noexistent after 8 years from diagnosis date. We are gonna beat this! My MO says TNBc is very sensative to taxol, so hope you have that on your regimen. Be strong, take it one day @ a time, lean on God, he is good all the time and can make beautiful things out of the shattered pieces that this crazy broken world leaves behind. Don't be slaves to fear, this is scary, super scary, but it doesn't have to rule your life. Don't let it steal your joy!!!

Ok< off soap-box, gave myself & all of you a good pep talk. Feeling tired, brain-blasted and achy after round 4 of taxol but its a beautiful day and I am going on a lunch & movie date with my husband while our son is at summer camp. Yay us! Blessings to all, A

Anonymous

Labscientist, I think maybe hair comes out in shower and bed due to pressure put on the head at these times. In shower, the hair is being weighed down by the water and in bed hair sticks to pillowcases and you are moving in bed and pulling out hairs as you move. That's my theory anyway. I have baths now, so I am in control of the pressure on hair and I have a silk pillowcase so hair doesn't stick to other type of pilowcase.

DistrictGirl

Ladies - I saw this on another thread I subscribe to and wanted to share with you in case you haven't seen it. This organization sends "port pillows" to cancer patients to make sitting in a seatbelt more comfortable. A friend ordered one for me and I thought it was such a wonderful idea!

2 hours ago Puffin2014 wrote:

If you or someone you know is getting a port, check out this web site of a charity that will mail a free port pillow. The pillows protect the port from a seatbelt rubbing on the port. They're also very useful over a tender sentinel node incision site: This site includes a link for ordering a pillow.
https://www.gofundme.com/Portpillows

DistrictGirl

In other news, I just chopped my hair to chin length (from below my shoulders) - don't think it's been this short since I was 3 years old!! I know I'm not supposed to cut before cold capping, but can't bear the thought of really long, thinning, greasy unwashed hair on myself lol! My hair stylist said it was on the house and even gave me some fun pink extensions that I can clip in and out (not with cold capping, but looks fun right now!)

labscientistmom

District girl, thanks so much for the info on port pillows! I ordered one just now! Sitting in the passenger seat is dicey, it hits right across the port, this sounds like a terrific idea. good on you for cutting your hair, its good to have control over whats happening. I got mine cut shorter than usual, because I couldn't get a perm this time (what's the point) so my wavy, cowlicked, ususally not cooperative hair is at least short and managable. Still just touching my shoulder but shorter than I usually have it. When/if it starts coming out in clumps or thins too much my friends gonna buzz it for me!! power to the people! blessings, A

Anonymous

DistrictGirl, I bet your hair looks great at shoulder length. What a lovely hairdresser too, to give you that cut 'on the house' and to give you some extensions. I hope your cold capping works well. I am cold capping too. How long are you keeping the cold cap on for? You need to take a paraben and sulphate free conditioner with you. That's because they ask you to dampen your hair and apply conditioner to the roots. I think it's to stop hair coming out as you take cap off. They fit it pretty tightly to the head and strap it on around the chin.

Do NOT be put off by the initial coldness. I cried and also felt a tad sick for 3 or 4 mins but then after the first 10 mins your head gets totally used to that temperature and you are able to keep it on for ages. Take warm socks and a warm blanket as your body temp will go down with coldness of cap. Also take lots of things to occupy yourself with. I found the more I had to do (read, watch films, text, eat, colour in) the quicker the time passed.

I came home and got straight into the bath and warmed up and washed hair.

Dolly

ClarkBlue

ALL - This is a great article re: flax seeds. Looks like it IS beneficial, but only via the diet not supplementation, and in moderation. Enjoy!

-Keely

https://www.oncologynutrition.org/erfc/hot-topics/flaxseeds-and-breast-cancer/

Moondust

Hi everyone! I am finally feeling almost normal today, 9 days out from first infusion. My appetite is good and my weight is back up into the 120's. All good! My lesson learned for next time is that I will not worry about weight loss during the first week after infusion. It will be far more enjoyable to regain the weight after my appetite returns to normal

Elocea, I'm in your pocket for Round 2! Good luck!

Dolly, have you slowed down on all that eating you've been doing? It may be fun, but don't forget that hormone positive cancer LOVES fat! I'm glad to hear that your hair is hanging around so far! I will definitely post a photo when my DH shaves my head in a few weeks.

For everyone experiencing fear and anxiety, which is perfectly normal, here are some thoughts: concentrate on today only! What you can do this very day to create joy and meaning, both in your own life and the lives of those around you? What can you accomplish today? If we focus on this and do not dwell on what we might not be able to do at some unknown time in the future, it brings some sense of calmness and well-being to our present existence.

LabMom Angela, you are doing exactly what I was just talking about! Good for you!

DistrictGirl, thanks for the port pillow info! A great idea. Enjoy your new style! I love mine even though it won't hang around more than another week or two. Hair today, gone tomorrow as they say!

Anonymous

Moondust, glad to see you back on top form. Yeah I lost weight too in first 5ish days but it went back on. I would not say I have gained huge weight, it's just that I thought I might have lost some hah! No luck. I am being careful with my diet. Eating lots of fruit, veg and fish and chicken. I am trying to say huge no to sugar, which is not too difficult as a diabetic, but at times when I need some sugar, I am even trying to raise blood sugars in a healthier way like eating apples or drinking milk or orange juice. I think my major major task this year is to lose weight and to get moving with exercise. I am waiting til chemo is done with and then going to make sure I do at least an hour of exercise a day. That's why I joined a gym. But to be honest, I hate exercise!

Keely, is it OK to take flaxseed as the milled powder? I have been buying taking this for a good few months now. Mostly because they say it is very difficult to get right amount of flaxseed in your food every single day and easier to take two tablespoons of milled flaxseed in cornflakes or yogurt.

ClarkBlue

My hair loss journey so far has been a little frustrating, so buy something as SOON as you can.

1. I had a friend order me a human hair wig with her cosmetologist license - from wigsis.com. It was $230 and we ordered it on May 24th and it JUST ARRIVED TODAY. We ordered it BLONDE, and LONG for 2 reasons. My stylist will color and cut it to my style prior to my hair falling out. Instead of trying to find one that "looks" like what I used to wear, we decided to create it with a blank canvas. My natural hair is strawberry blonde, it's easier to darken hair than to lighten it (apparently a very tedious process). Since my color has been the same for about 10 years, she will just use what she's been using for years, and cut it to the style I had before. GENIUS!!!

2. I have a temporary wig that I received FREE from the ACS wig bank. You just have to find a local shop nearby that participates. I googled, "AMERICAN CANCER SOCIETY WIG BANK KALAMAZOO MI" and there were several shops within 50 miles. The shops receive random wigs from the ACS and are given to patients for FREE. You are limited to the styles they have in stock - but I was able to find one that worked until my permanent one arrived. It was real human hair as well.

3. I sleep with turbans at night to catch anything that has fallen out. My friends ordered them for me and they are VERY comportable, but not very stylish for wearing out. I DID find a fantastic site with super cute turbans and hats - BUT it took a LONG TIME for them to arrive (they are handmade and ship from the UK). I ordered them on May31st and they arrived just this past Monday June 13th, so plan ahead - but they are so WORTH IT!! Super comfortable and stylish/cute. I will post pics for you.

SLEEPING TURBAN

STYLISH TURBAN

Here is the link to order the "cute ones" - you can't see it very well but there is a cute flower to the left (My right). http://www.suburbanturban.co.uk/women-hair-loss/

Also, here is a picture of Madeline, our first grandbaby... I cannot get enough of her!!!!!

-Keely

ClarkBlue

DOLLY - The last paragraph said this, "While research has shown some benefits with regards to ER+ breast cancer cell death and prevention of metastases within mice and cellular models, it is recommended that human intake should be through diet only, not supplementation. Only moderate amounts of ground flaxseeds, up to two to three tablespoons per day at most, should be eaten."

So I think based on this you should be good with the ground. :-)

-Keely

Anonymous

Thanks Keely, I did see that and did think the same as you too. That's great, I will carry on taking my flaxseed every night.

Clarkblue, I love your photos. I love the fact that you are ytaking selfies and your husband is doing the cooking! Also love the idea of a bedtime hat. I did buy one, but think it was too wee for my big old head and ended coming off in sleep. That's why I ended up buying a silk pillowcase. But I will see if I can get a bigger one for bedtime maybe. Also LOVE LOVE the cheeky wee monkey you are holding in the last photo. She is beautiful. That face is just a delight to see. She must bring you great joy and happiness. On the subject of wigs, I sort of decided not to get one. I am not sure why, I just sort of thought that if I do ose lots of hair, I will just wear a bandana and wait til it repairs itself. Have a look at UK site Annabandana. They have nice stuff too.

Dolly

Coffee-lover

I'm back at the center getting fluids. My blood pressure is very low so they're giving me fluids along with the neulasta shot.

Yesterday, the treatment and right after went fine. We went to lunch, I ran errands. Then about 3, wham, I felt lousy. Nausea, burning stomach, muscle aches. It was awful. But I didn't throw up. I almost wish I would have. I ate just really small bites. Had a pretty good night after taking a pill.

Today is better but my stomach is still rocking. I do like getting the ickies over with quick. Maybe I'll be back to good by sat.

First one down. Woohoo.