Starting Chemo in September 2017

Snazzyiron

Hello again, warrior women,

Does anyone know anything about Polar caps?  My oncologist gave me a pamphlet and said he has seen positive outcomes.  ( no hair loss)

OCDAmy

I looked into the cold caps and had information sent. I decided against them because the hair care regimine is not going to work for me (can only wash your your hair every three days, no staying products, no blow drying, no coloring). I tried doing that for a week and my hair looked horrible. Plus it's expensive and seemed like a hassle. If you had long straight hair that didn't need styling I think it would work.

OCDAmy

Quick update. I am on day 4 after chemo on Friday. I have been very surprised at how few side effects I have experienced. My symptoms have mostly been joint pain and overall achy feeling (like a low-grade flu). I have had some cramps and bowel problems but no nausea at all. I took a few of the anti nausea meds but have not really needed them.The joint pain has bothered me at night but I have been taking Aleve and using heating pads and have been able to get some sleep. I am going back to work today. I realize everyone is different but just wanted to let you know that so far so good. Best of luck to everyone who will be starting chemo.

toughcookie_21

snazzyiron, check out the thread, Topic: Cold Cap Users Past and Present, to Save Hair there is tons of information there about cold capping and many people use polar cold caps and share their stories.

I ordered from chemocoldcaps yesterday. I have my first infusion next Friday. My insurance will cover a portion of the cold caps and I am desperate to save my hair. I will let you know how it turns out.

Snazzyiron

Tough cookie,

Thank you so much for the info.  I am going to check it out right now.

PauletteK

Leila - I'm not sure how long the chemo stays in my body but I do think they stay for awhile I do bi weekly infusion and my instruction said I should drink 100 oz of water on the first four days. Once I drunk so much I gained 6 lbs overnight. Detox? Many of us have constipation issue maybe you want to see what kind of SE you have before you start detox

Moderators

Hi everyone,

We're working on two hair loss management videos and we want to include your photos!

Deadline for submission: September 8

These videos will help women facing chemo-related hair loss to emotionally and physically prepare, and to understand their options. The videos will be viewable in the Hair, Skin, and Nails section of the site by October 2017.

We're looking for any of the following:

·Photos of cutting your hair shorter

·Photos of the time period when hair was falling out

·Photos of having your head shaved

·Photos of yourself wearing synthetic or human hair wigs, hats, turbans, scarves, going "au naturel," or any other options you chose

·Photos of you using cold caps or scalp cooling systems

We welcome all photos, including those that have a sense of humor (such as the mom whose young children shaved her hair into a Mohawk)!

When submitting, please also include the following:

·Your name (we will use your first name and last initial if that is comfortable for you)

·Your city and state / city and country if non-U.S.

·The year(s) the photos were taken

·Diagnosis details if comfortable sharing (stage and type of breast cancer, HR and HER2 status) Note: This isn't required – voluntary only.

·Your email address and a phone number where we can reach you

How to submit your photos:

·If the photos were taken on your phone or digital camera, please send them in their most raw form: no Photoshop, no Instagram filters, etc.

·If you're scanning physical photos, please use a setting of at least 300 dpi and then save the photo as either a TIFF or a PNG file.

·All photos can be sent to Claire Nixon, Editorial Director at cnixon@breastcancer.org. She will respond to you promptly with more information!

Thank you and looking forward to your photo submissions!

MzPriss

My port went in yesterday after my baseline echo. OUCH.

Eating, talking, coughing all hurt. Simply moving my head hurts right now.

Initially my doc said my big chemo days would be 3 hours, the PA told us Monday it would be 5 or 6. I had hoped to be able to work half a day on chemo day, but that doesn't seem to be doable now. I haven't been at my job long enough to have much paid time off, so this will be rough. I'm fortunate enough to work at a great place that has no issue with me taking the time I need off, no fear of losing my job....but we may be eating a lot of ramen for the next 4 months.

OCDAmy

MZPriss, I too found the port to be painful once the local wore off. It hurt for about two days and then really started feeling better. I noticed the pain more up near my neck rather than where the port is. I am happy to tell you that I have no pain with it now and hardly notice it is there. Just have to be careful not to bump it. My first chemo infusion was 2.5 hours from start to finish (about 30 minutes of pre meds and two hours of chemo) however, it took quite some time for it to start. They have to wait until your blood work comes back before they even order the chemo meds. The nurse also took a lot of time going over things with me, I assume next time it might be faster. I am getting chemo on Friday and I took Monday off as well, went back on Tuesday. I am hoping to keep up this schedule as well as I used a lot of sick leave for surgery. Good luck, when is your first chemo?

bdja

Getting ready to start chemo later in September. On the 7th I will know more on when the port goes in and chemo will start. Already had a lumpectomy on July 10th. Chemo start date was delayed as I waited for an incision wound to close. Such an unexpected, interesting and new journey this is. I'm still feeling peaceful and optimistic, but am sure will feel more anxious the closer it gets! Very cool that I found this forum!

Moderators

Dear bdja,

Welcome to the BCO community. We are sorry that your breast cancer brought you here but so glad that you reached out to our supportive and informed members. Please let us know if there is anything we can do to assist you in navigating your way around the boards so you can stay connected and active here in the community. Keep us posted as you learn more. We are all here for you. The Mods

MzPriss

OCDAmy, my chemo starts Friday. I'm impatient to just get it started now.

My neck really hurts, even swallowing today hurts. I worked a full day and have a full day tomorrow. Reminds me of a saying, "Make hay while the sun shines". Have to work when I can...because I am sure there will be days ahead I just won't be able to.

toughcookie_21

Good luck on Friday Mzpriss! I will be one week behind you with TCH. I will be going back to work on the Wednesday after my first chemo. I've been out since surgery, so it's going to be interesting. Keep us posted on how you are feeling.

Travel_Girl

Hey gang -- for all the new posters in the 'waiting' stage - all I can say is that the waiting is the worst of it. Once you have a plan, while not stress free -- it does go into a new 'normal' after you have a plan.

Today, I am Day 8 from #1 TC Chemo (had it on Thurdsay, Aug 24th). Just as OCDAmy has stated, it hasn't been that bad. I didn't have any nausea at all - although took the advice of the chemo nurses/mo nurses that said, stay ahead of it - i did take zophran and compezine on schedule day 2-4. I took ativan one night for sleep. I use that sparingly, as I don't want to get addicted to it. I have also used ambien a couple of nights, I am hoping to sleep on my own - I love my sleep, and I will do what I can to get in 7 hours of sleep at a minimum. That is my goal for this coming week.

Most of my SE's have been a major headache (dr said to come and give me something stronger, i just don't want the addicting painkillers, so we will see next time). And mostly constipation - I waited too long to post chemo to start with the fiber, next time -- day 2 or 3, i will introduce it back in. So think of like stomach cramping, period style - not great - it doesn't take me down, just slows me a bit.

All in all I am pleasantly surprised, I thought it would be worse round 1. Everyday it is a little strange feeling that pops up, I am typically really healthy, aware of my body - so they are just off kilter, not anything that keeps me down. I will also state, I did not do surgery first and I am 48, so I think i was in a stronger state to start.

Sadly, I am looking for getting #2 underway - I am goal oriented, I like checking things off -- and I have to remind myself to live in between. Day 10 - 21 are going to be my best days - so what am I going to enjoy my life and not count the days. That is my challenge right now. Have a great day ladies -

OCDAmy

Travel Girl, yep, every day something new pops up! Last night I had horrible heartburn. I have had heartburn in the past but nothing like this. I used to take Nexium but stopped a few months ago because I didn't feel like I needed it anymore. Back on it today and hoping that kicks in soon. I have also had some diarrhea. Interesting how we are on the same chemo but you are having constipation and I am having the opposite. I am walking every day, not as long as I used to go (3 miles) but still getting out there. I like your attitude, how am I going to enjoy my life from now until the next treatment!

Travel_Girl

Whew! I had a day or two of the little 'C' and a low fever. I am happy to have 'passed' that phase. Learned for next time. I am happy to say, even though I didn't feel well, I went to my 3 month exercise program that I signed up for. Yay me

Perfect Timing - Sept, Oct, Nov - Training Sessions 2x per week. Awesome!

How is everyone doing?

OCDAmy

Woke up this morning with thrush, ugh. Another day another side effect. I called the nurse and she called in a prescription for a swish and swallow med. I hope it starts working soon, my tongue feels like it got burned by a hot cup of coffee.

PauletteK

Hi travel and OCD - I just have my infusion today so I'm going though what you are doing. I just deal with it each day I'm hoping won't get the mouth sore because those are nasty !!! OCD I hope you are feeling better soon.

MzPriss

First big one down yesterday. It took forever. Little diarrhea this morning. And, when I got home yesterday I had little air bubbles squeak out of my port, scared me...should I be concerned about this?

I'm already not liking the infusion center. I feel like a number. It's packed like sardines. Some of the nurses are cold and almost mean and rough. I was there for 6 1/2 hours yesterday, 6 of those in the chair. So much misinformation from everyone in the office. The insurance lady has my account all messed up and has no idea the difference between a deductible and a maximum out of pocket....and actually lied to us about the insurance auth. Things I do not need to be concerned about at this stage.

The front office promised to do it's best to work with my work schedule. The back office can't be bothered with that and have scheduled my appointments without discussing with me. So now they are scrambling to "fix" that. No, I cannot be at the office at 9:30 on Tuesday for Neulasta....as I told you last week I cannot miss a meeting at 9 that day if I plan to keep the job that is paying for this. I have not been there a year and have no PTO left after all the testing. Is anybody giving themselves the Neulasta shot at home? I thought I had read that some have. I even overheard one of the nurses yelling at a patient on the phone about scheduling, she was incredibly rude. I realize that they may be desensitized to all of this...but we aren't.

Is it over yet?

OCDAmy

MsPriss: I am so sorry your experience at the treatment center was not positive. My center was fabulous and my chemo nurse could not have been more comforting. I can't imagine having to deal with unpleasant staff when going through this scary process. My oncologist does not automatically give Neulasta shot for the first infusion. He said they would check my counts before the second chemo and then decide if I need the shot. I too read that the shot can be administered at home with a device they can put on you. I hope your next treatment is better and that your side effects are few.

Travel_Girl

MsPriss -- so sorry for you, my centers are great and i hope anyone working in a cancer center wants to be working there. I would say, ask a friend or family member to be your advocate, working behind the scenes to work out the details - so you don't have to deal with it. I went through a cancer dx with my mom and I did everything I could to shield her from the mess of insurance and co-payments, etc. It was my gift to her, I couldn't help in other ways - I could help with that.

OCDAmy - yeppers everyday a new adventure. I have not gotten extensive mouth sores (yet!) , we all have our things - I brush my teeth a few times a day, bought a water pik and rinse/spray with biotine. While I focused on that, I neglected to pay attention to by bowl movements and got hit with a major issue w/ constipation -- I feel like the little boy trying to plug all the holes in the water wall. I might have it down by infusion #4 -- all I can hope is to improve with infusion #2

PauletteK

MsPriss - most of the i cancer I read are pretty good and the nurses are very supportive. Mine is work out good I love all the nurses there I even brought some chocolate for their services. My hubby took care all the insurance BS for me since I have PPO we have so much stress with the insurance. It was more stressful in the beginning when I have to do all these MRI and PET scans.

I have my port on my first infusion because my Infusion date is Friday. It works out good the shot happens in 27 hours automatically.

Brightness456

Hi everyone. It's hard to join this thread as it means I'm actually going to go through with this and start chemo. I don't want this to be my reality.

I'm having the port placed this week, but I'm not sure when I'll start chemo. Probably in a week or two. I'll be doing 12 weeks of taxol and a year of herceptin every three weeks. I'll get radiation after chemo.

I'm thinking strongly of doing penguin cold caps. I wish it wasn't so expensive or complicated, but I really want to keep my hair. im still debating and researching, but I think I want to try.

My MO said the SEs should be quite manageable for me, but from what I'm reading here it seems lots of people are told that, but it isn't always true.

I had forgotten until I read others mentioning it here, but I'm pretty sure my MO said she'll give me anti anxiety meds prior to treatment as I'm also a nervous wreck who likes to be in control and obviously I have very little control over this whole ordeal

MzPriss

My best friend, oldest granddaughter and I went wig shopping yesterday. It was actually a good experience. We found a wig that looks like me, so much so that my BFF and oldest granddaughter cried when they saw it. So, I bought two. One to keep straight, the other more curled. This was the first thing in this process that I left feeling good about. Insurance will pay for most of one and with the rx I won't pay tax on the second, the shop is also discounting the second.

I seem to already have some of the GI issues. Diarrhea and nausea. My mouth burns a little and my eyes are really dry. I've got some Biotene for my mouth, imodium, compazine and zofran for my tummy. Now I need eye drops. I've also been sipping on mint/ginger tea, which has helped calm my tummy.

My husband and I agree that we should look now for a new oncologist. I can't imagine the next year of my treatment in the center I am at now. So I'll be calling around Tuesday. This process already sucks, I deserve to be treated well during it.

Brightness456

MzPriss, I'm glad to hear you'll be looking for a new MO. You most assuredly deserve to be treated well during this phase of life.

OCDAmy

Brightness, I am sorry you are here but we are here to support each other. My first chemo was not nearly as scary as I had built i up to be if that is any consultation.

MsPriss, I went wig shopping with my sister and found a really cute wig that looks like my exact color. I am calling her Bobbie. It is a similar cut but cuter than my current cut. I also bought a black baseball hat with hair attached to the bottom. My insurance paid for the wig too. I think looking for a new oncologist sounds like a good idea. This is scaring enough, you need kind people caring for you.

I have been trying to take care of my hair before it falls out and doing what I can during chemo to have it grow back faster. I bought organic products. I guess you just shampoo your bald head? I also wanted to stop using antiperspirant. I bought some Native natural deodorant online and it really works well. I recommend it if you also want to switch to something natural.

Happy to report after two days on the medicine, the thrush is much better and almost gone.

PauletteK

MsPriss - I agree unless you can express to your current Onc and he talks to his nurses in the center. You would not be the only one feel uncomfortable in that center.

Hang in there ladies, I just finished my last AC it is doable. I still deal with constipation most of the time and the gas in my tummy from time to time. Dry eyes and mouth are issues also.

Have a good weekend everyone.

JD_RN

Hello all - I have quite a story for all of you so hang on for what has been an amazingly horrible ride. I'm starting TC 4 cycles on 9/13 this is where I have ended up - here's where I started. . . . dx via mammogram in late May 2017, since nothing was palpable and everything looked small on all the diagnostics we decided surgery was they best option since I was ER+/PR+/HER 2-. Off I went to my double mastectomy with placement of tissue expanders 7/11/17 and from what has happened since, that was the easy part. I had heard horror stories about the mastectomy, but I was training for a marathon and lifting lots of weight when I was dx so I was in the best possible shape actually to go into surgery. Pathology showed larger tumors than expected and as it turned out I had not 2 but 3 different types of BCA - Lobular, Invasive Ductal with lobular features and DCIS (what I call a bad Amazon "add on") Sailed through surgery and the first days of healing then noticed some poor wound healing on my left breast. Then some blisters on my right. Both were along the suture line. Now I'm a nurse and stayed on top of what my Plastics doc said to do but the left got worse and then was necrotic and my Breast Surgeon saw this and freaked and made sure I had a revision for which I had been asking for 3 weeks. Post revision all seemed well, drains came out after 1 week and I flew to Houston (where my best friend is a cancer surgeon) for a second MO opinion. Just 24 hours into my trip I developed an enormous seroma on my left breast - it got so bad that we had to take some fluid off it bc it was stressing my week old sutures and as fate would have it the fluid was turbid - a clear sign of possible infection. Fast forward and I have had 4 aspirations and then the placement of another drain. The day after the drain was placed I spiked a fever which landed me in the ER and then I was put on the OR schedule to remove the tissue expanders. I was also dx with 2 infections one of which is multi-antibiotic resistant. Good times - 4 days in the hospital, one surgery as well as the placement of a PICC line for home IV abx. Since I am having chemo my ID doc is going to stop the abx until I'm done. I will use my PICC for the first round of chemo then get my port. The oral abx I'm on now are horrible on my GI so I have been sick for over a month. Have lost 20 pounds and already just want to get back to my life! SO i will rock out chemo take what comes, then go back to fighting my infection then get reconstructed and then I'm done. Then I get a half sleeve tattoo and a puppy!

I'm glad to find a support system - I'm not cold capping - I have really long hair which I am going to cut and do a sides shaved style and if it goes it goes. I feel no shame in being bald (except for what my head really looks like), no shame in people knowing I am a cancer patient going through chemo and if it makes them uncomfortable to see me bald - that's their problem not mine. I'm fighting to stay here as long as I can with my 12.5 son and sometimes these fights are just not pretty. I'm going to be living without breasts for at least another 6-8 months and I'm fine with it - breasts and hair don't define me. I might think about icing my hands to preserve my nails but even that seems like a real discomfort on top of everything else. Also don't really want neuropathy so need to think more on this one. But I am a warrior woman and this is the time to fight - I have great support and I hope you all do too.

I understand that there are people for whom the outward effects of chemo are sensitive issues and I support all of you in whatever you choose. But I wanted to put a slightly different attitude out there because I know there will be roughness through this process for all of us (even though I hope all of you will be spared), but I see this as necessary roughness which is in direct conflict with the unnecessary roughness I have been living since 7/11. I will take care of myself the best I am able and try to live somewhat normally while going through this. But I will embrace the battle scars of my fight and hopefully will lead by example for my son what it means to make personal sacrifice for those you love.

Thanks for listening - I hope the resonates with some of you. I look forward to all of us holding strong and winning this fight together - we may have cancer - but cancer does not have us!

Castigame

I second every word you said!!!

Mimi

Castigame

Well said!!!

Mimi