Chemo starting October 2017
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AgathaNYC- I am getting use to the hair and its starting to lay better. As soon as I saw my husband after my cut, I told him I look like my mom.
Later my 5 year old told me, you look like grandma. We haven't told her yet, that I will lose all my hair. Decided we will wait till it's really happening. She doesn't get it yet that mommy is getting more tired. My mom is here to help for right now, but at some point she will have to go back home for at least a couple weeks
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Hi all. Just checking.
Had my first chemo AC on Monday and feeling great.
Except for this blasted rib. It hurts with every breath. The X-ray shows that it is cracked.from the MRI. My medical team said that they have never seen this before. It will take six weeks to heal and I'm treating it by alternating Aleve and Tylenol. (One processes through the kidneys and one processes through the liver hence they want me to alternate to avoid over-taxing either organ.)
Nothing you can do to mend a cracked rib. They said they can give me something stronger for pain but I am still working and can't afford to be loopy.
Taking my meds religiously and rinsing with the saltwater baking powder solution.
The Neulasta trigerred last night, so far no SEs.
I do have a bit of brain fog but have had since my DX - don't really attribute it to the chemo. Put the peanut butter in the freezer, stop at green lights, I came into the living room for what?
Brain is simply on overload
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Had my first treatment yesterday of A/C, from 11:00 to 1:30, it went pretty fast. I am also single, and my son finished college last May. It has been nice having him here to talk to while finding the cancer. I had regular mamo last Dec. all clear and then suddenly lump found during self exam in June...like others, a whirlwind since then.
I drove to Chemo, my son went with me, he slept in the back seat on the drive over (hour away) He had a bug the night before picked up on Campus during visit over the weekend. Of course I was concerned about catching, but so far, good. He was going to drive me home but I felt good after Chemo, just wired from the Steroids. I had my son stay in the lobby and not go back to the Chemo room because of his bug. He did not mind, I do not think he wanted to go back anyway, I do not blame him.
Felt the metallic taste when one of the infusions went in but it soon passed and then the other one, I started to sneeze, the nurse came over and said that was happening because of the drip, so she made it slower. (I had read that one might make you feel like a stuffy nose, but this was more like sniffing pepper or something).. Nothing major.
When I got home I felt like a nap, so slept some after eating a salad. ( I too am Vegan) Had always eaten pretty much vegetarian, but my son asked if when he came home, I would join him doing Vegan and so we started in May. After getting the cancer news, and doing research, thought that was a great diet to help fight my cancer too. I am also a sugar addict, but cut way back because I read that sugar feeds cancer cells, that and belly fat... Still sometimes slip up, because to stress, but getting better every day. One of the things I have craved really badly lately is Cheese, like someone else said.... but I have not indulged, but Mac and Cheese and Grilled Cheese Sandwich sounds SO GOOD...
Last night no nausea, but the steroid wired feeling was the worst, wanting to sleep but being so alert at the same time was bad... but got a good nights rest, waking up this morning and say "Thank you God" no throw-ups!!! Ate some toast and some grapes so far and LOTS of water, added the lemon slices to day and it is good. When I woke up, I felt like my head has lead in it and when walking down the steps, also feel like weighted down with lead. I am a runner and hiker, so miss moving. It was raining and 85 yesterday felt like a steam bath so did not walk, except here in house going up and down steps for a workout. I am going to go for long walk later on my local trail, have to wait until we go do some shopping cause my hair will look like crap from the muggy air. I am visiting a second local wig shop today, so that I can put in my order, May take two weeks to get them, so must DO now. My son will drive me, just in case I have symptoms.
I have also been rinsing with the baking soda at every opportunity.... do not want the thrush... so I will keep this up!!
Thank you everyone for posting and informing. It is WONDERFUL to have the sisterhood on here. Everyone have the BEST day!!!
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HikerVA1956- your lump story is similar to mine. I had a 3D mammogram in late January and I found the lump myself on Labor Day weekend. I happened to have a regular gyn appointment in a few days and then that started the whirlwind of doctors appointments. I don't even know what to put down for lump size. Since the lump I found is 2.6 cm but the MRI showed another lump hiding behind it. But since it wasn't biopsied, it could be benign. Hoping the chemo is getting whatever is in there
Trying to get back to my morning walks. It's just been so hot and humid lately. But it's suppose to cool down soon.
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Hi everyone!
First time posting here, though I've been reading threads a lot since August when I was diagnosed. I had a lumpectomy and sentinel node dissection on Sept. 27th and am having my port placed on Oct. 19th. My first meeting with the oncologist will be on the 23rd and the surgeon thinks that it will be likely I have my first treatment just a few days later. So, I don't really know what regiment I will be on. I spoke with the nurse navigator and she said a common one is AC-T and after looking it up, it does fit my situation. I am relatively young in terms of breast cancer and it was an invasive cancer with a high grade. But, I guess I'll find out for sure on the 23rd.
I really, really like to be prepared, so I've done many things - even before surgery - to get ready. Dentist, flu shot, cooking, buying some supplies...I'm even going next week to get a really cute (hopefully) pixie cut. I have long hair and have always been afraid to try to go short, so now is my chance to have some fun!
Fishingal68 - I am a teacher too. Or was until this year...I finished my doctorate in May! My job (librarian and technology) was getting too overwhelming and my plan was to teach college and maybe do some consulting. I didn't jump into a new job for this school year, planning instead to find the right thing, build up some hours consulting maybe, and focus on my son transitioning to a new school. I missed my school friends and all the parts that I loved about my job so much at the start of the school year, but now I know it was a blessing that I left. That job was too physical and stressful for me to have handled my dx on top of it.
If anyone has any suggestions of anything else I can do in the next two weeks to prepare myself for chemo, please feel free to share!!
Thanks everyone for sharing and being a support here. Positive thoughts and prayers for everyone!
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petey11 - I'm a teacher too. Finished my masters in Curriculum and Assessment in 2016. I am definitely grieving my job. We will be on a similar treatment timeline.
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AgathaNYC- so glad you have been feeling good since your treatment. The doctors keep saying that many people find chemo "doable", so it is nice to see that you and others have been managing well on your first round.
Rljessu- I also chose not to reconstruct (at least for now). Since we live in FL and are in the water a lot I've been on the look out for a bathing suit that I can wear without prosthetics, maybe a ruffle or something on top to distract from the flatness. So far no luck, but I know it hasn't been very long at all, so my search will continue.
HikerVA- thank you for sharing such a detailed account of your first infusion. Everyone's experiences definitely help take some of the fear away from the unknown. I hope you continue to feel good.
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Petey111 & Joyseeker, I am on the dissertation writing stage of my doctorate. I'm pretty sure this semester is going to be put on hold, because I have been so busy with doctor's appointments, etc. This is so frustrating for me, because I am ready to be done with grad school! I have a wonderful student teacher who is handling my class at school while I am off with all the cancer stuff. (I teach Family & Consumer Sciences, and my classes are full)! Once her student teaching semester is finished, she is going to apply to be my full-time sub for the spring when I have my surgery & radiation.
I had TCHP chemo round 1 yesterday, and it went well. However, when I got out of the shower this morning, I was shaking like a leaf, and it hasn't subsided. Since my commute to work is about an hour, I knew I was in no shape to safely drive. Heck, I was too shaky to walk out to the car by myself. I also have a headache that won't go away. I've taken 2 naps today to help off-set some of my exhaustion. My Neulasta is scheduled to inject later this evening. I am hoping for NO reactions, so I can get to school tomorrow. I don't 'sit around' very well, and this mind-numbing televsion watching is overrated!
Y'all take care!
Sending positive vibes from Grand Lake, OK!0 -
Hi LisaRx - The only thing I would have done differently, would have a plastic surgeon sew me up, not the Breast Surgeon. The BS said if I'm not happy with the incisions, (I'm not happy) I can have a PS redo in 1 year. I really don't want another surgery, but we will see what the scars look like then.
No regrets at all. I had cancer in left breast, and BS wasn't to happy to take the perfectly good right breast, but I insisted. I couldn't imagine having one droopy breast, since I plan to be completely flat. I have neurothopy (?) from shingle pain and bra's were very uncomfortable, plus the strain on my upper back from large breasts. I might have nipple tattoos once all of this is over. The Only issue is I have to keep my Stomach flat. No breast, large tummy doesn't look to great for the self esteem. So far so good.
Take care all!
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Trinity411- Have you tried lands end? Maybe a high neck top or a short sleeve swim shirt?
I tried on a pretty white one with flowers high neck top from them, earlier in the summer and now it comes to mind.
I am planning on a double mastectomy after chemo but think I will reconstruct.
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Hello everyone, I had a double mastectomy on Sept 18th. I have been being followed for a tumor for about 4/5 years. This year, new doctor (thank goodness!) at the same Cancer Center. She was concerned and rightfully so, they found a 7 mm Stage 3 tumor that has spread to at least 1 lymph node. I do not have all the final pathology reports yet, but I understand that HER2/neu is good news. I am meeting with Oncology this week and have my bone scan and body CT this Friday. I will know next week the whole picture of what I am dealign with. I begin Chemo soon, most likely by the end of the month for a period of 4 months, 2 month rest, then radiation. The doctor told me that I could expect to be on therapy for the next 10 years or so. I am 56. I plan to work through Chemo, any insights or recommendations?
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Hi, Petey411 - welcome to the gang! It seems like you're really prepared and are on top of it. Here are a few random things I did to get ready for chemo:
- make a playlist for my phone of songs that would keep my spirits up while in sessions or hanging out in doctors' waiting rooms.
- organize a 3-ring binder to keep all your insurance/medical notes & records in.
- some stuff to buy if you don't have it handy: a portable phone charger in case your phone runs out while you are at longer than expected appointments, a package of blank notecards & stamps for thank you notes, freezable cooling pack like a "bucky" is good to have in case you get a bit of a post-chemo hot flash. I'm others will have more/better suggestions.
- Take some time to "appreciate" your long hair before you cut it. I'm sure the pixie will be cute, too!
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CJbutcher - welcome!
I am working through chemo, or at least trying to. My job isn't physically demanding, but even so I took off 2 days at the beginning of this week. I was just too tired. I also would like to hear if others are able to work everyday. My chemo sessions will be every two weeks. If I can get away with only losing 2 days per cycle I'll be fine job-wise. It's been really helpful for me to be really up-front with my managers so that they know the deal. It's less stressful for me that way; for instance I don't have to be so worried if I'm at an extra long lunch in order to see a doctor. One of them was so much more supportive than I imagined she would be. I hope your job can work with you, too.
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Jennifer522: I see you are Triple Negative too! I am feeling great this afternoon after a mildly sluggish morning. I even went for a two mile walk and wanted to do more, but it is muggy and hot here too, but SC is probably worse. Where is OUR FALL weather! I feel like I am having a giant burst of energy and feel so good... still wondering when the "bad" will hit. My Neulasta just went off about an hour ago and has finished. I am not looking forward to the bone aches!! If I feel this good, I will go in to work some tomorrow to catch up on a few things... sure hope it continues.
AgathaNYC: You are TN also, and the work thing is going to be a wait and see. I allowed this week off (Monday was a holiday) and if I continue to feel good tomorrow will go in for a while. It really does help if there is support and understanding on the job. I would feel terrible wondering each day if I could make it in and everyone being resentful or something. I have a lot of vacation built up and many sick leave days, but I do not want to use them up because I have weeks of chemo ahead and then surgery and radiation following. Hope you continue to feel good and can make it.
Hello to ALL newcomers. This sight has been a Godsend for me... much easier to follow the path that others have gone before. It is important to know some things to expect too. Makes this journey a lot easier. Prayers to all.
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fishingal68 - I completely understand where you are at! I was so ready to be done by the time I started writing. I had a tendency to spend a Sat. knocking out a huge chunk of things, but I also spent about 40 hours on my Spring Break last spring getting most of it done so that I could defend in April. It was a haul, but it was worth it. Don't worry too much about putting it off. That's why we get ten years to do it right?! It's so good that you have a great student teacher! That takes a lot of stress off. It sounds like everyone is super supportive, so try not to feel overwhelmed when you can't go in!
Joyseeker - Congrats on fishing that! I'll be watching to see how things go for you. It's so surprising to me how different everyone's timelines are. You were diagnosed quite a bit after me, but you had surgery sooner than me. I guess probably mainly because my surgery was up in the air based on genetic testing. If I tested positive for the gene, they would have done a double mastectomy. If I tested negative, they would just do the lumpectomy. I hope you are healing well.
Agatha - Thank you for the tip. I was thinking about making a playlist, but haven't yet. I'll have to do that. I have never heard of a "bucky". I'll look into that too! The pages here, the posts in the community, and other blogs I've found have really been helpful in trying to prepare. I went out today and bought a few things like biotene, travel kleenex, hand sanitizer, etc. I have a "cancer binder" (I keep saying I need to call it something different), that I've been adding to as I get paperwork. I'm worried it's not going to last long enough! LOL I'm glad your supervisors are supportive and sorry you are too tired to work much. I know I'm not in the middle of it, but I've tried to remind myself that this all will be a trial that eventually has an ending. We won't come out of it the same person we will before, but the majority of the chemo will have an end date. You are probably sick of hearing that from people who haven't been there though. I wish you good luck with the next rounds of treatment.
Sending positive vibes everyone's way!
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Long day ar the hospital did a heart test first didnt get up to chemo room till 930. Did lots of checks and went over everything again started chemo 1230. 1245 i was in not so nice allergic reaction. Felt like some one pulled out my lung and made my heart beat through my chest... Lots of drugs later it settled... Finally got treatment but got it much slower... Sigh so tired. And they said sleep will be rough because of all the steriods they gave me. 12 hours total at the hospital... I hope this week goes by better
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I'm part-time and am working through it, but it's not really a fair comparison to full-time. I actually started out taking a LOA but quickly learned that I needed the support of my friends, and the "normalcy" of getting up and doing something.
I'm also very happy to report that after my first meditation yesterday, I slept through the entire night for the first time since I've been diagnosed! I don't know if that's always going to work, but it's one arrow I hope I can use in my arsenal. I'm also not hesitant to use acupuncture or massage, if needed.
Petey411, Here are some things I did to prepare:
--Type in all my medications and dosages into Notes of my iPhone.
--Added Chemo Days to my calendar at home and work, and moved anything out that fell into the +4 to +6 day out range.
--Set up reminders in my iPhone calendar to remind me to take my myriad of medications around Chemo days.
--Bought a cheap weekly AM/PM pill container and sorted out all my chemo day+ medications into their respective slots. It's like a jigsaw puzzle trying to figure out when to take what and this made it a lot easier for me.
--Added new contacts into my phone for all my Patient Advocates, Doctor's offices, pharmacy, etc.
--Updated my email contacts and created a Distribution list for updates. I'm considering CaringBridge, but not sure the older folks will be comfortable registering, etc.
--Stocked up on some whole grain bread, tapioca, oatmeal, Raisin Bran, and other bland foods in case I felt nauseated. Also froze some Welch's 100% grape fruit bars that my friend's sister recommended to me.
--Bought antacid.
--My friend who works in Oncology recommended a Chemo Bag to take with you. Included a nice warm blanket, books, puzzle books, headphones for listening to music or guided meditations, and a portable iPhone batter charger.
Hope this helps! Have a great day! Die, cancer, die!
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MrsWinnie, how awful. I'm glad it eventually got straightened out, but I can't even imagine what a long day you've had. I wish you rest and peace...and that the chemo is finally in place and doing its job eradicating any cancer cells.
Rest easy.
Lisa
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Ugh, MrsWinnie. What a long day! I hope you are able to get some good sleep in spite of the steroids.
On a side note, I've always wanted to visit Nova Scotia. It looks so beautiful in pictures, a world away from my beloved but dirty NYC.
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Agatha we not that far 😀 colors are amazing here this time of year. Take care folks heading to bed soon wishing for a full night sleep for all of us.
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Thanks, Jennifer522. I've checked out some Lands End suits online, but I'm so not an online shopper. I will definitely take a ride to the store and try some stuff on.
Is anyone cold capping or thinking of doing it? I know there is a separate thread, but I'd really like to give it a try and just wondering if any of you ladies were considering it as well!
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I went for an oncology massage and healing touch treatment yesterday. It was wonderful. I had a 6/10 sleep. Before I was sleeping 2/10. My mental health was really compromised because of lack of rest. I'm going for port consult today. Chemo to start the week of the 23rd.
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Mrs. Winnie - That sounds scary and exhausting. I hope that today you get a chance to rest.
Lisa - Thank you for all the tips too! I'm making a list of things to do!
Joyseeker - That sounds wonderful. I definitely want to talk to the oncologist about massage, acupuncture, etc. and see what's available and what insurance will cover.
Hoping everyone has a good day!
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Hi. Trinity - When I first read about the cold caps I was excited, but then decided it wasn't for me.
My friend's sister is going through treatment and doing the cold cap. She has gorgeous, thick, wavy hair. So far she's only had some thinning of her hair but still looks great.
It was a no-go for me because of the expense, extra effort/time involved on chemo day, and the fact that my hair isn't that thick to begin with. If it thinned out I probably wouldn't be comfortable enough to go winless/scarfless anyway.
Let us know what you decide. If you go for it please let us know how it goes.
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Up and down day. Spent the morning cleaning and organizing, something that empowers me. This afternoon was rough because I went to the hairdresser and got my hair cut really short. I've never worn super short hair, so it's very odd, but not hideous. she cut the sides and back to about an inch, then left the top a few inches longer. She's been cutting my husband's hair for years so she really knows how to cut short hair. She was super nice and I'm so glad that I went to a stranger instead of my regular hairdresser. She'd have cried along with me, and that's not what I needed!
Bald will be tough, but I'm going to start wearing my hats now so that people will get used to seeing me in hats before the old cue ball.
You know, it's funny because this first 2 weeks of treatment have been fine. No nausea, some tiredness, but I've been working through it. Psychologically, I might actually need my hair to fall out so that I can believe the treatment is actually doing something.
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Hi, ladies!
I was too unsteady (shaky) to drive to work yesterday, so I spent the day after chemo round #1 napping. I felt much better this morning (even after my Neulasta injection) and went to work. I'm exhausted! No rest for the weary. I'm hoping I feel well enough to go back to work again tomorrow. Right now it is a day-by-day thing.
Have a restful night, everyone!
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Hi, LisaRx - I bet the short cut looks cute. I go in for my haircut tomorrow afternoon. I spent some time today looking on line for examples of short haircuts I like. Who knows how they will look on me, but I won't need to live with it too long if I don't like it.
Has anyone thought about their eyebrows and eyelashes yet? My oncologist said they are the last thing to go so I have some time. She gave me the go ahead to do microblading on my brows if it's within the first 4 days after infusion. I'm in the process of trying to get an appointment for that. Lashes I may just do without.
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Oh Ms Winnie I just hated to read of your experience. Please update us on how you are doing!
Thank you LisaRx for the list you shared! I start chemo next Wednesday and keep going over my list to make sure I am prepared for it all! I'm glad your treatment went well and you are feeling good!
Trinity-- I am going to try the cold capping experiment. It is so generously being gifted to me by my parents. They watched me lose my hair from chemo 24 years ago, and when they heard about the capping they made it their mission to research it and help me give it a try. It is going to be a lot of work, and I will be journaling throughout on the cold cap thread. A local friend of mine completed chemo 2 months ago and had good results while taking 6 cycles of Taxotere like I will receive. Which chemo regimen will you be receiving? Feel free to PM me with any questions or visit the thread for plenty of things to consider.
Fishinggal-- I'm glad you listened to your body and took a nap. What chemo regimen are you receiving? I hope your work is being forgiving to you right now.
Agatha-- What is eyebrow microblading ? I'm so curious!!
Please keep sharing your experiences! Thank you ladies!
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MamaFelice - Eyebrow microblading is a semi-permanent tattooing of the eyebrows. They make very fine lines to create the effect of individual hairs. The process doesn't go as deep as a real tattoo, and the inks are gentler. A lot of women do it just to fill in sparse brows, but the person who I want to go to works with a lot of cancer patients. She also does work on reconstructed breasts, to help cover up scar discoloration and to create a lifelike nipple with tattooing.
Best of luck on your the first round of therapy and the cold cap. I hope it works really well for you. What a thoughtful and generous gift for your parents to give you. I'm sorry you are revisiting this 24 years later. You must have been so young last time. I hope it's a lot less scary in 2017.
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Well, folks, the steroids must have kicked in. I've gained 5 pounds since chemo on Tuesday, and I cannot sleep! Ugh! To add insult to injury, I received 2 bills in the mail yesterday for cancer diagnostics, to the tune of $25,000. Heaven help me, I hope my insurance picks up most of the tab.
Anyone have a good way to get rid of the 'nasty' taste in my mouth? I tried the biotene swish, & the baking soda-salt thing, and both clean well, but neither kill out the taste. I have also tried different flavors of hard candy, and so far I haven't discovered 'the one'.
My husband said he had dreamed that I was at school when all my hair fell out at the same time, leaving me slick headed. I told him it didn't happen that way, so last night during dinner, a hair fell out into my plate! And so it begins...
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