Starting Chemo May 2020
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Angela, you look fabulous! The wig is perfect!
Welcome, Shauna!
I ordered from headcovers.com and the only issue I had was duty charges I didn't expect-but being in Canada it shouldn't surprise me. I really like their ponytail headband I can wear under a hat. Super convenient and looks so natural.
Julie
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Hi Ladies,
I'm day 7 out from Round 2 and sitting upright once again....lol. It was rough again, but slightly less painful than round one. The dizziness was (still is) very debilitating and I spent much of the last few days flat on my back as a result. I've also had much more stomach cramping this time and the fever on day 4 came back full throttle. I decided that I didn't want to go to the ER at 11pm on a Friday night in DC, so opted not to call the doc and thankfully it broke around 2am. Not sure what keeps causing that fever, but I guess it's part of my course? Anyway, I feel a bit better today and wanted to say hello
. Welcome to the group Shauna! No advice on wigs or makeup, but I have found some nice head covers on Amazon. The Focus Care brand bamboo ones are very soft and pretty and cheaper than the ones on Headcovers.com. I have ordered from there too and my experience was not bad.
Angela--- I love the wig! It suits you well. Best of luck with the AC. I hope the side effects are not too severe. I'll be thinking of you on Friday
. KC-- So sorry for all the drama with the port. It is interesting that they made you stay at the hospital and fast until the procedure. I had my COVID test two days before my procedure and though they advised me to "stay home", they were far less restrictive. I'm so sorry that you had to miss your chemo session! That must have been very disappointing and I think I would have been devastated. As much as I hate to have the chemo, I just want to get it over with. Big virtual hugs to you!
I hope everyone is well and fighting the good fight
. Cheers,
Sabrina
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HI all,
Today I am day 5 of round 3. Days 3 & 4 were quite awful. This morning I am feeling a lightening of the symptoms. Although I know the mornings are always better than the afternoons. On day 3 I felt the worst. I sent my husband out for popsicles, because that was the only thing that sounded good and when he brought home the wrong flavor, I burst into 5 minutes of tears. Poor man. I felt like round 2 lasted longer, and now round 3 has had a few days that were worse than before. But now that I have hit day 5 it is tolerable.
Shauna, welcome. I understand your anxiety. I felt much better in round 2 because once I went through a round of this I knew what to expect, and most of the anxiety goes away. The fear of the unknown is the worst part. I have bought 2 wigs online and neither worked. I have a big head and the large cap size wigs do not fit. The first wig I bought was from wigs.com and it was synthetic. I thought it looked like doll hair. The second wig, I bought from wigsbuy.com. It was human hair and looks really good, but doesn't fit my fat head. The return policy on both of these sites is 20% restocking fee for wigs. I am going to be calling some of the wig shops in San Francisco and see if they are opening yet. Or if I can make a one on one appointment. I think that is the only way I am going to find a wig I like and that fits. I do like the few bamboo head cover scarves I got. Very soft and comfy.
Angela, your wig looks great on you! I am happy you found a good one.
Sabrina, sorry you have been having a rough time with the fevers and dizziness. I have been having some dizziness and ringing in my ears each round, but not too severe.
I hope you all have a easier week ahead.
-Suzy
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So MRI this AM and port was put in. Definitely sore now and do not like the feeling. Got a call a few hours later that a lymph node looked suspicious from the MRI so I have to go in for a biopsy on Wednesday. I was warned this could change staging. Ugh I feel so poked, prodded, and defeated. Friday I will then have CT scan. Meeting with onco again the following Monday and then - if nothing else happens - chemo will still start on 7/1.
Ugh I'm just sad because I've been told all along how great the lymph nodes looked. Now I'm afraid.
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Angela, your wig looks fantastic. Thanks for the tips on videos. I signed up for two classes today.
Round #6 of 12 kicked my butt, but feeling better now.
Thinking about everyone as we continue on and power through!!
Paula
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SMichaels,
Will they be doing a fine needle biopsy? That's how my node was tested. Please ask your doctors to keep track of the location of any nodes that test positive. If possible, ask for a surgical clip to be inserted to keep track of their location. My positive node was clear of cancer after chemo (according to an MRI and PET scan), but nobody knew where that node was. To make a long story short, my surgeon ended up take out ALL 20 of my Levels 1 and 2 lymph nodes; I am SO LUCKY I haven't developed lymphadema. The goal of surgery these days is to remove ONLY the nodes that are likely to contain cancer cells so as to reduce the chances of lymphadema.
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Sorry about the suspicious lymph node Shauna
. I had two lymph nodes test positive by biopsy prior to my mastectomy in April, as a result, the surgeon removed 22 lymph nodes during that procedure. 4 ended up being positive and there was evidence of extra-nodal extension and LVI,so the oncologist added chemo to my treatment plan. It is very scary to have lymph node involvement, but you are already prepping for chemo and hopefully that will help catch anything before it spreads. Better to know than to be blindsided later? As far as staging goes, my oncologist doesn't even really like to give a number as she prefers to see staging as a guide to treatment options and doesn't want to have the patient dwell on the negativity of an assigned value. Don't worry about the staging.... just focus on the path to healing . You got this! As Elaine said in her post, make sure they add a clip to the site of the biopsy. This should be standard, but of course, things are not always ideal. Best of luck with the biopsy and stay strong!
Hugs,
Sabrina
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dense dose chemo.
Hi everyone, I hope you are all staying safe! I have a question and would love an answer or direction to research if possible. I’ve read studies that say dose dense chemo improves survival and I’m wondering why my oncologist recommended the traditional every 3 weeks regiment. I had 4 rounds of chemo every 3 weeks. thanks for your responses
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Mariadelpilar- originally my oncologist was going to have me do 8 dense dose rounds 4AC+4T because of my age(42) size and type of cancer removed 2mm invasive And 2.5 DCIS in left breast plus I had 2 positive sentinel nodes and they removed 13 more lymph nodes and 1 was positive. However once the results of my ONCOtype test came back with a score of 13 he then decided to change my treatment to 4TC every 3 weeks. He told me the long term side effects of the other chemo outweighed the benefits for me specifically. I am pretty confident that having a double mastectomy, 4 rounds of chemo followed by 30 radiation treatments that I am doing all I possibly can to get this cancer out of my body. I think your oncologist must have decided that was what was best for you based on your specific cancer.
Christie
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Good to see everyone's updates, even with a lot of struggle going on right now. I always feel like I'm coming home when I come to this thread. My peeps!
Mariadelpilar - That sounds like a conversation that you need to have with your oncologist. My understanding is that some types of chemo for some types of cancer have shown good results when administered in a dose-dense regimen, but I don't think that's the case across the board. You'll find plenty of folks here who are receiving a more traditional regimen. Your oncologist should be able to explain why this choice was the best in your entirely unique-to-you case. It's totally ok to ask questions like this of your doctor--even if you've finished chemo. Good luck!
--Judy
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Hi everyone
Quick update from me. When I went in to have the lymph node biopsied based on the MRI findings, they did an ultrasound first. The doctor came in and said he saw nothing out of the ordinary and showed me the images. He said if he would biopsy he'd be poking in the dark. So no biopsy for me!
Today were my CT and bone scans (PET was denied by the insurance). Good grief I didnt realize it was going to be an all day event with drinks, IVs, and tons of waiting. As soon as I got home my care coordinator called and said the CT looks normal but the bone scan wont be back until Monday. The bone scan is the one I'm worried about, since I've been having a very specific pain in my arm for the past month or so. But at least so far so good!
I meet with the oncologist on Monday morning, and if all goes according to plan I will start chemo 7/1. Gah is it weird that I am just ready to get going already? I want this cancer GONE so I can get back to my life.
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Hi everyone,
Have been meaning to check back in. Like Judy, I find these boards really supportive. I think I wrote before that my 3rd chemo had been delayed because of a port infection. Still, it was a busy week for me getting the port removed a week ago and just recovering even from the moderate sedation and then a few good days before a longer than anticipated day waiting to have a PICC line placed. I guess when you're getting a PICC line non urgently you go to the back of the line of things happening in Interventional Radiology that day! The placement was not too bad and just under local anesthesia. Then on Thursday I had my 3rd chemo and feel relieved to have that behind me. The beauty of the PICC line was no needle stick but having an external line is a bit of a hassle - needs to be flushed with the dressing changed once a week and is a little awkward in terms of trying not to sleep on that side. It also can't get wet! Still, definitely better for me than having a new port placed for the sake of the last two cycles (4TC) - fortunately one more to go! I always get through chemo and the next day with flying colors - I think because of the steroid premed! But today I'm dragging more and feeling the combined effects of the chemo and Neulasta. It's funny even though I now know what to expect it definitely makes me feel a little bummed to feel this way again even with knowing I'll feel better within the week.
Smichaels, I can completely relate to you in terms of just wanting to barrel through all of this. It's especially hard with young children who may not understand and who rely completely on you! Mine are 8, 6, and 3 so I'm right there with you in terms of the demands of that age.
Sabrina, I do hope you are feeling better! Look forward to hearing an update!
Suzy, presumably you're into your second week and marching toward the TC finish line! So happy for you and will be right behind you now on July 16th!
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Smichaels11 - Good luck tomorrow with oncologist appointment. Hope you begin on July 1st too.
KeepingCalm - Glad things went better with the PICC line. What a pain that must be for you. It sounds like you are almost done. Who will be the first in our group to finish first? If all is still going ok, this week for me will be #8 of 12.
July 4th weekend - I had a weak moment and decided to rent a place on the ocean next weekend, but then realized that was probably not the best idea, so I cancelled. Just itching to get out of town for a few days. They have cancelled the fireworks so really no point in exposure. Anyone have fun plans for the 4th?
Hope everyone is having a great weekend.
Paula
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Oncologist appt. today went well. All scans were good so I was cleared to start chemo on 7/1. I am NERVOUS about this, but know it needs to be done.
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Hi everyone,
Paula, sounds like you are also ticking down to your finish line! Fingers crossed my last chemo will be July 16th. I was also supposed to be going to a rental house on the beach. Still wondering about possibly going next week but can’t figure out if that’s just dumb or if it’s not that different from the status quo in that I’d be just hanging out in the house. My doctor said no way this week, which makes sense in terms of recovering from chemo, and maybe next week. I am definitely feeling a little stir crazy but at the same time am so close to the end of chemo that I certainly don’t want to take an unnecessary risk
I believe Suzy will finish July 9th
SMichaels, what great news about your scans. That must be at least a small relief! I was also very nervous about so many things about this but realized the sooner I started the sooner I’d be finished! Not sure if other people have had the same experience, but for me, the day of chemo and the day after have generally been non events. It’s then the following handful of days that in my case, I’ve just felt like I had the flu or something. Do you have support for you and your son? I was never bedridden or anything like that but at the same time had a handful of days where it was really helpful to be able to take a nap and have someone else deal with the day to day of meal prep for the kids etc.
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KeepingCalm - Yes thankfully I have my long term boyfriend (together forever, just not married yet). He has been doing the lions share of just about everything for the past month since I was diagnosed. My son has been at his grandma's house off and on just so I can get a better handle on my emotions. She has a pool so he has had no qualms about being there lol! We both also are working from home right now which is a blessing in all of this. My director also advised she would allow me to remain working from home until chemo is over. I am excited for some forward progress for sure. I asked the oncologist what my reoccurrence risk was and she said less than 10%. I wish it was lower, but I dont want to focus on that. It was a .4% chance that at age 30 I would have breast cancer so I'm hoping that is where my shitty luck ended and this can all be a memory someday.
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Smichaels, I can absolutely relate to you in terms of the stats (and that neither of us should have gotten breast cancer to begin with - I’m 39). I can also relate to your recurrence concerns. I have somewhat come to realize that there’s never 0% risk of anything really in life and so am trying to focus on the upside of all this treatment ... getting into the 90+% chance we’ll be able to put this behind us. It’s hard to do that though when it’s new and we’re in the thick of it. Know you are not alone in what you’ve described of some of your feelings about all of this!
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Today is day 1 of chemo for me! I know you are all well into the thick of it, so thank you for allowing this July girl into your May group. I enjoy reading about your experiences, joys, setbacks, and advice (like great big sisters do!)
PS; I will be cutting my hair into a pixie tomorrow. I definitely feel bad in the infusion center today with such long hair. They could tell I was a newbie 😆
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Good Luck Shauna! I was the same on my first day. The nurse reminded me that cold-capping was still an option to try to save my long blond hair....lol. It's tough, but you got this! Love the shirt too
. It's not fair that any of us have to go through this, but I think in the end, we will all be stronger from it and have a finer appreciation for what really matters in life. I'm sure the nurses will take excellent care of you today and guide you through this difficult process. I'll be thinking of you and sending good vibes. Hugs! Cheers,
Sabrina
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Well after months of nothing but dreadful stuff, I finally got some GOOD news yesterday! Last year at my annual eye exam, the doctor noticed a choroidal nevus and was very concerned since it wasn't there before. I have been especially freaked out about it since my cancer diagnosis and was afraid it might now be melanoma... in my eye! But thankfully, the ophthalmologist office has finally reopened and at my appointment yesterday, she said it did not look cancerous! Yippee! I still have to have it monitored closely, but for now it is not suspicious. I am so relieved. I do have some sort of inflammation of the sclera ( the outer part of the eye) and I have to use steroid drops for a while, but that's not big deal in the grand scheme of things. Also, I bought a seriously overpriced wig on Monday. It's cute and really well made, but holy sticker shock. My insurance will cover up to 500 bucks/once per year for a cranial prosthesis. Have any of you submitted claims to your insurance for wig purchases? My Aetna rep says I do not need a prescription from my MO, but the wig specialist says I probably do. I hope everyone is having a good week and for those of you undergoing treatment this week, you are in my thoughts and prayers! Hugs to all
. Cheers,
Sabrina
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Hi Ladies,
Just wanted to check in. Just had my 4th Taxol on Friday and have had a relatively easy time this round. No Neulasta, so bone pain was minimal. Just starting to have nausea and woozy feeling today, Day 5. Shauna, I can totally relate to feeling bad about having hair walking into a room where a lot of the women were wearing scarves. I knew it wouldn't be too long before I joined them though, so it was short-lived. Also, love your shirt! Good luck today. Keep us posted on how you're doing over the next few days.
Sabrina, that's great news about your eye! I have some info about the wig/insurance. My insurance only covers 1 wig per LIFETIME, but there is no $ limit. It would normally cover 80%, but since I met the Out of Pocket Maximum months ago it will be covered at 100%. They also told me I didn't need a prescription but I got one and sent it in with my claim anyway. I haven't gotten payment yet but I know it's in the works. Good luck. You may have to follow up with them.
Angela
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Shauna: Sending you all the good vibes. You are stronger than you know. You've got this -- especially with that t-shirt!
Sabrina: Whew! What a relief! Thank you for sharing some good news here. No advice on the wig prescription -- I am working at home and decided to forego in favor of scarves. But it was one of the first things my MO offered to do, so I don't think you need to think twice about asking for the script and then you will just have it. Good wigs are definitely $$$! But having one you like is everything. (Just ask Angela ;-) )
Yesterday was Taxol 8 of 12. Two-thirds through, four to go. Hanging in there, but the fatigue and feeling just icky are definitely catching up to me more these days. I am ready to be done with this part. Y'all are amazing and inspiring!
--Judy
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Hi everyone,
Shauna, seeing your photo and thinking about headcoverings made me think you might be interested in one of the things I got - a baseball cap with hair! It’s actually the primary thing I’ve worn the whole time and is not too hot and actually looks pretty natural.
https://www.shopdearmartha.com/headwear.html
So glad your son has been able to be at his grandmother’s with a pool. My sister lives nearby and has a pool and that has been an absolute godsend in dealing with this whole BC thing with summer camps cancelled! I’m glad you will be able to continuing working from home. That flexibility will doubtedly lessen your stress somewhat and also lessen the worry about being potentially immunochompromised.Sabrina, I also got a wig, although I’ve only worn it a few times. I did get the MO to write a prescription and send it in with the claim to insurance, which is still in process. But like someone else said the process was super simple and presumably the MOs are used to it so if it potentially expedites your reimbursement than why not.
Judy, I’m 3 into my 4 TC chemo cycles (every 3 weeks) and I do feel like I’m noticing more cumulative fatigue. I’ve heard a number of people with my protocol say that the month after the 4th was actually the worst for this so I’m a little worried about that! Still, I’m hanging in. Hope you all are too
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Keeping calm- wow I love that! I bought a $300 wig online and it looks ridiculous on me! This might be just what I need! If you want, and please dont feel obligated, I'd love to see what one looks like on a real person! The models make everything look so good (hence my awful wig purchase)
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Hi Shauna,
Here’s me in my long haired version. I like it pretty well. I also bought the shorty version, but I'm exchanging it because the ends flip out in back, plus it’s much thinner than the longer one.
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I LOVE it! I tried to order one last night but the Dear Martha website kept getting stuck at the CC billing address screen for some reason and wouldn't go through, ugh! I emailed them so hopefully they will respond soon. I will be cutting my hair short later this morning.. I'll post pics later. I haven't had short hair since... ever! My SO and I will then buzz our heads ( probably in about 2-3 weeks based on how much starts coming out). I woke up this morning a little nauseous so I took some Zofran and it seemed to help. No other SEs yet, but the onco nurse said that days 3-5 are usually when they crop up. I've been mixing whey protein powder in almond milk and drinking tons of water to try and stave things off a bit. Oh, but it does burn when I pee which I've read is fairly normal?
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Hi Shauna,
I did have some burning sensation for a few days after my first round, but not so much the second round. My urine is still a somewhat yellowish color and smells different (chemically?). I would only worry about it if you have a fever, which might be a sign of a bladder infection. Worth mentioning to your doctor when they schedule your follow up though. I hope the nausea isn't too bad! Keep up the fluids and get plenty of rest. You got this
.Angela----- that hat looks great on you and I love that you are experimenting with different colors! My daughter wanted me to go red but I just wanted to try and feel like myself.
Cheers,
Sabrina
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Angela, love the long wig. I'm glad you're able to exchange the shorty. I can't find a place that will exchange. Going to look for new wig on Sunday. Wig shopping has been a pain I have a halo and a ball cap too.
Shauna, how are you feeling? Did you have your hair cut? I bet it looks great.
I had #8 this week too, Judy. I also had a check in appointment. My doc apparently releases dates in shifts after I've checked in every so often with her. She released the last 4 dates and I am on the books and scheduled. If all goes well, my last one will be July 30th.
Hope everyone has a great July 4th weekend.
Paula
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PJAL, I am feeling okay. Tired today, but I think I'm spending more time waiting on side effects than actually experiencing them if that makes sense. The constant pills are getting to me, though. Steroids, zofran, claritin on repeat. I was very healthy prior to this, and hardly took Tylenol for headaches so it's a big adjustment. I did the big chop yesterday and it was very emotional. I keep telling myself it's only temporary but in reality I know it's going to take many years to get my long hair back, which has me a little down in the dumps to be honest.
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Shauna, you look great. I love it. It really suits you. You may not have to cut it any shorter. I cut my hair too which was very emotional. I have been told by the nurse administering the chemo/herceptin, that I would lose about half my hair and not all. During my initial appointment with my MO, she said I would lose it. My hair is thinned, but so far, some is still hanging in. I did purchase a wig because I cut my hair shorter than your hair and since it's thinned, you can see the thin spots. I don't have enough hair to cover it now because I cut it too short.
I think I experience more side effects from the premeds. A couple of side effects that came later was a rash that comes and goes and nose bleeds and those are from the treatments. Not bad, but annoying.
Hang in there, you can do this. You look great and I'm glad you are dong ok. You got this!!
Paula
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