Anyone Starting Chemo in June 2016

Jojok

can you do a PEM scan? It was like a regular mammogram just longer. I did the MRI biopsy with a sedative and it was fine but I had also done a previous breast MRI without sedative and was ok too.

Jojok

I got my port on Friday. That incision hasn't been to bad. My sentinel hurts worse. My neck was pretty sore after because I think they have you in some strange positions to put in the port. You won't be able to do any lifting and will be a bit tired. Good luck.

pepper43

Things are moving at the speed of light in my neck of the woods. I went to the American Cancer Society office closest to me and picked out a wig yesterday. Broke down and cried after trying a few on- thought I would be okay and had psychologically put my big girl panties on but off they fell in a room full of wigs, scarves and turbans. After I got home, the 2 of our 4 kids (and our furbaby Pepper) who were there had some fun with it so I decided I would to. What do you think...who wore it best?

My breast surgeon called at the end of the day to let me know my second biopsy results showed more cancer- so lumpectomy is off the table. We'll talk surgery as we approach the end of my 20 weeks of chemo. Fun.

Jojok- I get my port placed today and an ECHO done as well.

NattyB- no such thing as TMI with me and I'm right there with you. Aunt Flo came calling on Sunday and I was like "oh great! Just one more thing to deal with this week!!"

I take my chemo ed class Wednesday morning and get blood drawn. That afternoon, I'll be getting my hair cut for donation and shaved. I'm going to have to get full body Big Girl Panties for that one...though it's made a bit easier to swallow since both my husband and one of my sisters shaved their heads last night in solidarity.

When talking plans with onco on Friday, I thought my first AC infusion would be Friday so I was planning on getting all ready on Thursday since there's so many appointments & other madness up to that point. Learned yesterday that nope, we're starting this party sooner. First chemo session is Thursday morning.

Any of you doing the Red Devil (AC) with tips on most USEFUL items to have on hand, I'm all ears. Will likely be Amazon shopping today to make sure they get here on time (oh Prime how I love thee) and doing a grocery store run after I'm rocking a bald head tomorrow.

Heathet

labscientistmom - I do have a port so I'm good to go 🙂. I didn't want the nurses digging around trying to find a good vein! My veins don't seem to cooperate with any IVs! Yes that was my second cat in the tree! George and Toby 😸

Coffee-lover

Pepper - everyone looks so sweet. You rock the wig. I love all the family participation. My husband will be giving me a good haircut this weekend. I agree about the big girl pants, I just hope mine stay on!

I had AC last Wed. Since then I rinse my mouth with biotene a couple of times a day and take the anti-nausea meds like clockwork. My worst reaction was the nausea and it hit me about 4 hours after treatment and lasted well into the next day. I still have it but it's manageable with the meds. Also, my friend sent me ginger candies (chewy) that seem to help and just make me feel like I'm getting a treat.

One of the anti-nausea drugs is a steroid so I took a sleeping pill for the first couple of nights. If you're having the steroid and don't have a problem with taking sleeping pills, I would request one. Ativan is a sleep aid that also helps with anxiety and nausea. I've found it to be quite helpful.

I didn't do much else except make sure I had food that didn't need prep and always had water. Oh, water may not taste good. You may want to get some sparkling water or add lemon/oranges to water. That seems to have passed now for me but I assume I'll be flavoring my water next week.

The nurses also recommended that I empty my bladder every four hours even at night. You'll notice your pee is red at first as all the chemicals leave your body.

Good luck. It sucks but the Chemo Bots are fighting the evil cyclops. Go Chemo Bots! That's how my family's decided to characterize it!

Coffee-lover

One thing that has me very sad today - I have not had a cup of coffee since last Wed when I started chemo. My stomach just isn't stable enough to even risk it. I haven't tried vodka but even that doesn't sound appetizing.

Just needed to vent. I love my coffee!

NattyB

Pepper - love the pics! I think you wore it the best. My boys including husband saw my first wig - haven't pulled it back out yet but H-day is looming. I need to get some hats and bandanas or whatever too, I feel like I'm on hair watch. Seems to be the #1 question from everyone - so, are you gonna lose your hair? My second favorite to "when will you be cancer free?" sometimes I say never (since I'll always be paranoid and when I'm feeling bitchy, kinda like now, lol.

Anonymous

Coffeelover, I am like you and adore my coffee. I have not been able to drink it since 3rd June and first infusion. I wonder what that is all about?

Pepper, I love all your pics. It is so nice that family are all so supportive and keeping you laughing. I also think that wig looks pretty good on you too as it is very similar to your own hairstyle. Are you going to wear it out? I am curious as to why you are having chemo to reduce a tumour before your op? I ask only because it says your tumour was only 2cm and that I would have thought would not need chemo? Sorry to hear about cancer being elsewhere. Is it in same breast or other one? However at least they now know this and can get to it with the chemo and surgery.

NattyB you ARE cancer free. They cut it out of you girl!!!! Lets be POSITIVE. You have had it taken away. Your cancer is now sitting in a jar somewhere in a lab in Nashville...

Dolly

PS Labscientist and Moondust - cannot miss you two in any chat, how are you both doing? I do hope Mondust that you have not gone away up some mountain and got lost. And Labscientist, hope you are feeling well. When is next infusion. How is that nail?

txrus

Dollydimple-last chemo scheduled for July 5 since the unit is closed July 4, but it will still be Independence Day to me! :-)

Heathet

txrus - that's great news! That will be reason to celebrate!

Pepper - your wig looks great on you.

Dolly - what you said about being cancer free is so true! I forget that my BMX removed the tumors and all the skin surrounding it! It so hard keeping that positive mind set and knowing that I'm flying in the cancer free zone - we just need to shoot down any lose stragglers!

Happy Tuesday everyone

Anonymous

Txrus, I am soooooooooooooo jealous of you. God I wish I was getting close to last one. I have 5 left to do, but after Friday ONLY 4 yeeeehaaaaa!!!!!

Heathet, I think we all forget that one very very important point. The tumour is gone and even if there are any stragglers lurking about they have to deal with 6 bouts of chemo, not one or two....BUT 6!!!!! Also they have to survive radiotherapy. I had micromets in one lymph node and even that does not worry me toooo much as they removed the lymph node and so it has been removed and gone along with lump! I am sure we will all ALWAYS worry, but we need to learn how to worry less and to get on with our lives in a healthy way.

Dolly

Moondust

Dolly, I am not lost. I am spending the last 1.5 hours of my 28 year career sitting in my office! After that, the Endless Weekend begins! My hair has hung on these two weeks, so only one person at the office knows what I'm going through. This year has sure been a year of changes for me. I hope you are totally enjoying your day. I'll be in your pocket tomorrow!

I started liking coffee again just a few days ago. But now I'll only have one cup instead of three. My weight is back up a few pounds to 122.5 and I'm happy with that, so no more ice cream for me (At least not much). If I don't do anything strenuous I feel like I have plenty of energy. I'll have to see how I feel during Round 2. My next infusion is the 29th.

Pepper, that picture of the dog wearing the wig is just too funny! I vote for the dog. Your hair will probably last another 2 weeks in case you want to postpone the head shaving ritual. I am also curious as to why you are getting the chemo before surgery. Usually I hear about that for HER+ people only. I'm sorry you will need the mastectomy, but reconstructions can look fabulous and you might not need radiation except if they want to radiate your nodes.

Heathet, I'm glad you are all ready to get started. It seems like a long road, but once we get going it isn't so bad.

Coffee-lover, did you get an explanation from your doctor for feeling so weak? I hope you are feeling better now.

NattyB, we are cancer-free in the sense of No Evidence of Disease, but I fear I will never be completely free from the shadow and worry of cancer. I hope to be so busy living that it slips my mind most of the time.

Jojok, glad your port went well. Mine was sore for a couple of weeks but now I don't feel it or even think about it.

Llroseworld

1st chemo was last Friday and today had my first bad day. Tummy hurts, hip and back hurt, feel like I've been hit by a truck and the top of my tongue can't taste anything normal. 😢 Took last of the oral steroids last night so I think some of this is "chemo crash". Hoping for a better day tomorrow!

pepper43

Port is IN! Echo done. 2 more steps down this long and winding road today. I was tempted to fly off the bed on the way to OR and make a run for it. So surreal to be completely healthy one day and told you have a life-threatening disease the next. I keep waiting for Ashton Kutcher to knock on the door and tell me Punk'd has been rebooted. If only!

Feel sore, weak and generally weird with this thing inside of me...but after enduring some pretty painful poking around to get the dang IV in for the port install, makes me glad to have this thing in my corner. I'd hate to endure THAT the whole way through. Ouch.

Heathet- so glad to hear you're good to go for chemo!!! I may be in a chair same day and time as you one of these days along the way.

Coffee-lover- ordered some Biotene and ginger candies from Amazon (thanks for suggestions!). So I take it the red pee is why they call AC the red devil??? I'd love to see a pic of your cut when you get it! And yep, you know things are bad when not even vodka sounds appetizing. I'm debating calling the dinner hubby's taking me out on tomorrow night (Chemo Eve as I'm calling it) "The Last Supper." Ha!

NattyB- thanks for the vote on the pic! I put this up on Facebook and Pepper (that's our furbaby's name) won by a LANDSLIDE. I couldn't resist commenting, "hey people, c'mon I HAVE CANCER!" ;-)

Dolly & Moondust- My cancer cells are vicious and aggressive and the lymph node involvement (at least 3 are in the big old grade 3 party) is why oncologist is recommending chemo warfare before surgery. Radiation is definitely on the treatment menu and will happen after surgery.

I'll definitely be wearing the wig out at some point...probably not terribly often in the summer. It's been pretty hot here in NC so I'll be rocking some cool turbans and scarves...or slathering my bald head in SPF 20million. I did order a light purple cosplay wig too- may as well have some fun as a bald lady.

txrus- YAY for your upcoming independence day! I'm excited for you.

Given our shared circumstances, I wish we all had never met...but I'm glad we did and to be walking this path with you ladies. Reading through this entire comments thread in the wee small hours of the morning the night before last, I noted how amazing so many of you are. Courage, spirit and sass. I love it.

Anonymous

Pepper, that last remark, brought a wee Scottish tear to my eye! And we Scots are usually a very hard bunch. I feel the same way as you and feel I have now made friends for life here!

Dolly

Anonymous

Moondust, How are you feeling about last day of work???? OMG, I am jealous...

ClarkBlue

OMG NattyB your comment about telling people you'll never be rid of cancer when you're bitchy had me DYING!!!!!!

BAHAHAHAHHAHAA

(Big sigh)... Thanks for the much needed laugh!

-Keely

labscientistmom

Heatet: I had my 5th taxol infusion today, the port makes it soooo easy. My body is still working on healing the incision after 6 weeks. That itches sometimes and I get bruising over the port, but it is SOOOO much better than setting an IV. They ran the taxol sloow today, 1 1/2 hours instead of 1 hour, so no more icky "gee suddenly my eye's won't focus" side effects.,

Pepper: I loved the wig fashion show, but it looks GREAT on you.

Dollydimple: see above for infusion info. Hair fell on my face last night as I turned my pillow over, there was a big clump in the drain after the shower, and when I run my fingers through my hair at my neck, oooooh, you should see the big spidery nests. bummer, my hair is giving up. glad I have stuff ready. I got some tea tree oil and put it on my toe. It turned the nail kind of white on the top. my son and husband complaiined bitterly about the "strong smell." The black really hasn't spread, so I am hoping to keep it. I got some great sturdy ice packs from a friend that she gets with her shipped medicines and they worked great!!! stayed cold the whole time. Getting tired tonight as usual on chemo day, but fingers arn't aching so, YAY! OH, and my CAT scan results were normal! yay!

labscientistmom

To all, RE: comments like: "wow,. what you're going through sounds rough, but you LOOK great." Had a long time friend go with me to chemo today. It's great the have help changing out ice packs and juggling disintigrating paper pillowcases as they leak. Also makes the time go by when someone is there to chat and play Jigsaw words or Scrabble on my Kindle. We went by the grocery store after and at one point in the conversation she said, "It's amazing how great you look considering all you are going through every week." I think people are amazed and happy that I don't seem sick to them. (I wish I felt as good as I look most days.) Now my hair is starting to come out, so maybe rocking the chemo hair look will line up with people's expectations. I struggle with what to say when folks say that, I think " thank you for the compliment" and "I wish I felt as good as I look" I think people care about us, and want the best for us in this crazy process that they struggle to relate to or even think about. Being in the healthcare field, I have thought about it more than most, and I still can't get my head around it some days. that's my soapbox moment for today. blessins to all, A

krekre

pepper43 - your wig looks great! honestly, if I hadn't known, I wouldn't have known.

Had my first chemo yesterday. Taxotere/Carboplatin/Herceptin/Perjeta. I was there for 9 1/2 hours. For those few of us left who haven't had their first chemo in June take place, it went like this.

1. They put in my IV (had trouble getting it in and I almost fainted)
2. After they got it in, they gave me 10 minutes of fluids to help me feel better from almost fainiting
3. Steroids/Anti-Nausea meds
4. More anti-Nausea meds
5. Benedryl
6. 7 minute saline flush (I think they did the flush between every step prior to this too, but I can't remember)
7. Perjeta
8. 7-minute flush
9. Herceptin
10. 7-minute flush
11. Taxotere
12. 7-minute flush
13. Carboplatin
14. 7-minute flush

The reason it took so long is that they started the perjecta, Herceptin, and Taxotere slowly and built it up. I guess if you haven't had a reaction by 15cc's of Taxotere, you are generally in the clear. They gave me carboplatin full speed. According to my infusion nurse, people don't generally have a reaction to it until infusion #5 or #6.

I did ice my hands and feet and chewed ice for the entire 2 hours of taxotere. That was tough.

Felt weak and tired (but wide awake) night one. Slept but was awake every hour to pee for some reason.

Today, stayed home and ran errands til noon, then went into work. Came home cooked dinner and was beat.

Ways to stay entertained during 9 1/2 hours in a bed: Play Head's Up created by Ellen Degenerous. But play the "adult" themes and listen to the nurses laugh at you behind the curtains.

Try on the different beanies that have been lovingly crocheted... the best ones are the themes. This one was barbecue.

Come up with names for your friends who attend these crazy long sessions. We decided Chemo Doulas. Thought it was unique and funny then goggled it and found out Chemo Doulas actually exist.

labscientistmom

krekre: yowza, 9 1/2 hours waaaaa, holy kanole, that's terrible.

I am not looking forward to the long A/C infusions (I heard 5 - 6 hours every 2 weeks.) that I will get after my weekly taxol, but I am only there for 3 hours. Of course, it's every week, which seems relentless. YaY, I am done with 5 out of 12 (the only thing more relentless is gas and reflux.) Ha Ha ha. Love the pictures, hope the hat is a keeper. I got a pretty knitted turquoise one with a flower, cause when summer is done and maybe it gets cool here in Calif, I might need it. Didja see my above post, hair is finally coming out in spidery little clumps. SIGH blessings to you, hope you get some sleep! A

pepper43

3:47 AM here and I've been awake for a bit. This port thing is making it uncomfortable for me to sleep in my normal position on my side. And I'm worrying about enjoying some last time with my hair. I seriously wanted to rent a convertible and go out for a spin with my hair flowing in the wind before my shave appointment. Oh well.

Worried about first AC infusion on Thursday- wondering how bad I'll be suffering from SE. Whether I'll be able to function somewhat normally. Our littlest has a Minecraft Mod camp starting up next week. I want to be able to drop her off and pick her up each day that week so I can give her kiss goodbye and hear all about her day once it's done & fresh in her mind.

krekre- Chemo Doulas! I love it- and how cool that it's actually a thing. Hubby should be coming for most but one of my sisters will be with me for second. She has the week off from nannying and I wanted her to meet my Oncologist.

Anonymous

Morning June Ladies,

The one thing I hate about this writing on the forum is that I never get to speak to any of you when you are actually up and awake because of time differences! But I suppose it's always a nice morning treat to read you all during breakfast!

I have 2 more days of freedom and then second infusion. Jerez this waiting thing is so dull.

Labscientist I'm glad you tried the tea tree and sounds like maybe it's going to work? See I'm not only good with eyebrows but also nails. Should maybe have become a beautician instead of teacher haha! I'm also sorry to hear about the hair but I think it's good to finally just get the horribles over and done with. To me my hair and eyebrows are the real horrible bits of this. My hair is still hanging on for dear life but had a sore head last night??!! Not sure if that's a sign of coming loss. But weirdly it was just on the left hand side of head. Haha I told you all it is truly going to have to be a Donald Trump combover from right to left! I also get your point about looking well and people being surprised. Maybe we should all draw in black shadows and shave heads immediately?

I'm in docs just now to get bloods done. Hope all is good for Friday👏

Krekre you look fab. That's how to do chemo... Glamorously and with friends. I hope you're feeling OK?!

Pepper hope the port feels lots better soon! I'm glad I don't have one considering what you ladies have reported so far about them. I have excellent veins according to the doctor!!! Would prefer to have excellent legs and backside but noooo,God chose to give me the fab veins! Typical.

You know what ladies??? We are ALL doing fabulously well!!! Let's get known as the thread who did the best chemo ever!!! I adore every single one of you on this thread! You bring me a feeling of security and support! It's like Pepper said we all know each other and that is good even if we wish we didn't

Dolly

Heathet

Krekre- I will have almost the same treatment as you - taxotere, carboplatin, and Herceptin. They are doing my infusion over two days this first time. Tomorrow I start with Herceptin and then the TC on Friday. They said plan on about 3 hours but I'm planning on a little bit longer. Taking snacks, iPad, book and lots to drink. Still can believe I start tomorrow.

Elocea

Dolly's right, everyone is doing so great! Knowing what to expect - from you all sharing your experiences -is really helping me.

Pepper, you were wondering about A/C SEs. I get steroids with mine and this is generally how my days go: day of - feel mostly normal except for a bit of a cloudy sensation during administration then 6-8 hrs after my infusion the nausea hits. I've learned now to take a gravol in anticipation (along with my other meds) to make me just want to go to sleep. Next day - high energy with the need to eat small meals every few hours, & taking anti-nausea meds exactly as prescribed. Days 2&3 - digestive discomfort, lots of Tums, and I'm just slow moving. I can go for short walks even on these days as long as I'm going slowly. Days 4&5 - much better feeling in my belly but lower energy and more inclined to nap. I've driven myself to blood work or other appointments these days. Oh, I also wake up in the middle of the night from the first night until night 5, usually to pee, or just because! Steroids are likely the culprit.

Sounds like a cool camp your little one is going to Pepper! I hope you are able to pick her up and hear all about it. My suggestion would be to conserve your gusto for things that are a priority each day. I don't bother with chores some days so I can fit in a walk or see a friend. Other days I stay home and get laundry done but feel happy to be productive. Hopefully things go smoothly for you!

Heathet - good luck tomorrow! Hope all goes well. Sounds like you are already packed and prepared

bbbb

Dolly - Thanks for the encouragement! The closer the first treatment day gets, the more nervous I get ... your posts help alot! Had a MILLION tests yesterday, 3D mammo, CAT scan, Bone Scan, ugh! But at least they are done! Going wig shopping today with my teenage daughter - she will make sure I choose a good wig! Thoughts and prayers to you on Friday. Let us know how it goes.

Labscientist - love the cat pictures! Our cat Murray always makes me smile - he is so crazy. He is not a lap sitter so it will be interesting to see how he acts after treatment. We bought a huge cat tree for him and he NEVER goes near it!

mccormcindy

yes, they gave me zofran just before the chemo. also had a Rx for zofran and compazine. i wasnt told to take the Rx s after i got home. it hit me so fast and hard that when i did take them, it was too late, would barf it right up.

i have an Onc appt here in a few hours. will definitely demand to know what to do to keep that from happening again. also, he had me get an echocardiagram of my heart last week, so will see how that turned out. still have a bad case of bronchitis since i was in the hospital too.....can't seem to shake the spasms.

i had found the beanie hats and scarves too hot to wear down here in south texas this time of year, i sweat like crazy. but, a friend of mine ordered me a wig....so, will see how that is.

big hugs

Anonymous

Bbbb when is your big day? You are going to do grande!!! You know this right? We don't accept anything else on this thread haha. Be sure to take tabs and drink lots. I lived on lemonade ice lollies in first few days. Settles the stomach.

bbbb

Dolly - well it was supposed to be tomorrow (Thursday) but insurance company has yet to approve chemo (although they approved PICC line for chemo???) Anyway because I have not heard from doctor yet and it is 11:00 am and I have to take steroids the day before - I assume no chemo tomorrow. At first I was frustrated but then I realized I should take the delay as a blessing and totally enjoy these few extra days pre-chemo!

And yes, that is why I love this thread - the positive "you can do this" attitude of everyone. We are kindred spirits going through difficult circumstances and attitude is everything! I will stay positive, I will be fine, I will conquer this cancer, I will be beautiful in a wig, I will grow old, I will, I will, I will !!! Ok that's my pep talk for today - can you tell I ate cake for breakfast??

Anonymous

OK so maybe another day of freedom is not so bad! Enjoy it and prepare for it. You are absolutely correct that you are going to walk this and be confident and beautiful the whole way along. Beauty is strength and courage and finishing a job well. You will shine throughout this and then look back at yourself in admiration. I still can't believe I had a biopsy and did not cry!!! I think we find strength when we know we have to! We all know this chemo is a hassle but we are also all aware at how wonderful it is that we can actually get it. Some in other parts of world are not so lucky. We are lucky to have this fabulous medicine to kill off any leftover baddies