Chemo starting November 2018
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Jiffs you look great
I'm enjoying all the animal pics. One of these day my children will figure out that I have more photos of my cat than them but she's the only one that doesn't make ugly faces every time I hold up the camera. I hope everyone has a very happy Thanksgiving. I'm at work for a few hours tying up some loose ends and then its off to dinner!
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Doggies too! Brielle’s beautiful, MaddieBrie1. I love all animals and get teased by many of my friends. If I could adopt them all, I would.
Have a Happy Thanksgiving everyone! 🦃
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I was petless by the time I started chemotherapy but I would have let my cat continue to sleep with me. He had feline AIDS from FIV so was immunocompromised himself and if he had anything I would have found out about it. He was tested for toxoplasmosis when first diagnosed with FIV and I had been pretty good at keeping him away from the vectors so I didn't have to worry about getting it from him. I also had Neulasta injections to keep my neutrophils up.
But had I locked him out of the room I could be assured that something would end up getting peed on.
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Susan05 - my nurses told me to take the over-the-counter Claritin to help with bone pain the Neulasta might cause. Everyone is different, and you may not have a problem with it, I hope not. Hope you are doing well today!
Jiffs - you look awesome, honey. Mine started falling out in the shower yesterday. I cut it as short as I can with the scissors and ordered a hat just now. I understand. It's hard, hugs. This too shall pass.
LizzieBo, I love the cats, isn't it nice we all have a pet. They love us with or without hair. I love the photos, makes me smile! You can sew! You lucky girl, I wish I could! If the infusion gift store is open today, I'm going to get my free American Cancer Society wig. My husband offered to help me too, aren't we blessed to have them.
Maddie, I love that freckle foot! I wish we had a dog. Our dog died of cancer a few years back and it pretty much broke our hearts. My husband is a dog person, but tells me I have too many cats to get another. Maybe one day.
Hope you girls survived the holiday food and were able to eat something good.
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Maybe it was the steroids yesterday but I totally felt like superwoman in the kitchen. We had been invited to 3 different houses by relatives, but declined them all since it was day after chemo and I usually sleep the majority of the day away. Not yesterday! Holy moly the energy. Walked the dog at 5:30 like usual. Started prepping the 4-6 lb turkey breast and the veggies around 11am.
We had olive oil and herb rubbed roasted turkey; honey balsalmic glazed mushrooms, brussel sprouts, onion, red kuri squash, honey squash, potatoes, and carrots; green bean and mushroom casserole; sun dried tomato honey corn bread; stuffing w a bit of left over roasted pork, dates and cranberries; and homemade apple crisp for dessert.
We saved the carcass to do soup in the crock pot w whatever is left over from veggies next week. One of my sisters stopped by w plates of food and dessert from one of my uncle's houses. We had an "empty" fridge at the start of the week, and now - holy moly.
Took 2 rest breaks during prep. The Nulasta shot kicked in about 2pm. We ate about 6:30/7pm. Napped from 8-10p. Put the rest of the food away, cleaned dishes and dozed off again til about 1am. Pup and I did the walking thing about 6a this morning. She let me sleep in a little bit. Now we're just having some snuggle time.
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Jiffs, I did the same after handfuls in the shower this morning and I cried too. Maddie, you're making me hungry, what a nice bunch of food - you certainly are a great cook! Hope you have some sunshine to walk your poochie in today! Cloudy and rainy in Missouri, but 50 today.0 -
Hi everyone
Starting chemo this Tuesday, November 27th. 4 rounds of TC. Scared and anxious regarding the side effects. Bought the paxman scalp cooling cap. Hope it works.
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Good morning and welcome Asaka. You may find it useful to go back and read thru some of the other months chemo starting threads to get a sense as to what to expect. The ladies from the Sept and Oct starting threads are a good resource, and have been very helpful to me.
Also, there are lots of other threads specific to your type of cancer. It's the beginning and scary. Once the plan has been mapped out, it gets a little easier and after your first tx, you'll know a bit more of what to expect and be less anxious.
MB1
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Thank you Maddie. I’ll check out those threads. This forum has been very helpful getting me through this process.
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MOCat - looks good! sorry, you cried though
Welcome Asaka - Maddie is right, the other chemo months offer really helpful reading.
I am bounding with a level of energy I cannot even wrap my head around. This is the kind of energy I was expecting from the steroids but never got. A week ago I had never felt so awful and today I feel completely normal. I know that a week from now I'll feel exactly as bad as I did last week (Maybe worse since they're going to load me even heavier with the steroids and benadryl next round to prevent another reaction to the adria) and that makes feeling so good right now that much sweeter.
I've been pretty careful to stay out of super crowded areas this past week and the crowds will only get worse from here. I still haven't told anyone at work other than my boss and my assistant that I'm on chemo but that may have to change. The director of nursing came cruising in to the morning meeting this morning coughing up a storm and I about fell out of my chair. I can't hold it against her, you can't take off of work because of a simple cold and of course she doesn't know I'm on chemo or she probably wouldn't have come in to the conference room so its on me for not being open about my condition. I'm just really, really enjoying this little slice of my life where I'm still normal old me.
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You look great missouri cat! It's just the next thing for us to get used to. I was even out in public with a bare head last night! Got too hot under my toque. Keep being a positive light!
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I've been thinking about your words today, Jiffs - another part of our journey. I hope you know how much that helped me. Thank you.
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Lisa - thanks for posting that. I had a horrible ugly cry last night on my husband, I had taken off one of my hats and on the inside just reams and reams of hair. When I showered, those darn hairs were everywhere. I emptied the hair stopper twice aand sobbed. I think I had a panic attack with the ugly cry. I freaking hate HATE HATE crying. I hate not feeling in control. He put me to bed in one of his t-shirts he had worn earlier in the week, had me take one of the valium and just laid down next to me when I was crying. I eventually nodded off to sleep again.
I think I need to look up one of those counselors. I am feeling a bit out of control emotional with everything these days. (Maybe that is also a SE of being hurled into menopause.) I have little boxes in my head where things get put when I can't think or deal with them. I know that's not exactly healthy. I just can't process more than one traumatic event at a time right now. I lost a boob, a baby, lymph nodes, now my hair and what I feel remains of my dignity. I am more than my hair. I am more than a cancer patient. I am more than a miscarriage survivor. I am more than the things that happen to me.
Sorry to be 'Debbie downer'. Just need to get some of this out and of all folks, you guys get this freaking roller coaster and lion in the fridge like no one else.
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Wow...I have become so informed just by reading this forum!!! I have learned so much the last few weeks....lessons that we rather not have...but have to deal with.
Asaka….I am also getting four rounds of TC starting on Nov.30th.
I just went to a support group at a local hospital. Great group of people, like an extension of this forum. One woman mentioned that the American Cancer Society has a class called," Look Good; Feel Better". It is a two hour, free group workshop which discusses wigs, makeup, skin/nail care, etc. She said there were a lot of useful tips, as well as some freebies! The phone number is 1-800-395-LOOK(5665). Unfortunately, I cant attend the December meeting (doesn't work with my chemo) but hopefully I can go in January. If someone has attended, can you tell us your opinion of it please!!
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Flower, thank you for sharing about that class. They will offer that here in January. I will try to go, if I can take the time off work.
Maddie, hugs to you. It was in the shower mine started to fill the drain. Reminded me a little of Psycho, the blood/my hair. I am so thankful and yet struggle a little with the grace/burden my husband offers and has to bear. He is a mechanic and can fix anything and I know he thinks if he tries hard enough, he can fix this. I hope all of you women on our board have a friend, spouse, family member you can count on for support. If you do not, I would offer to be that friend. We should all not be alone.
I've been trying to organize my hats. They are like a pair of socks you have to pick from every day now. The American Cancer Society will give you a free wig. I get my next infusion on Wednesday and am hoping, when I get done, to visit them at the infusion center gift store and pick one out. You can view their catalog online at www.tlcdirect.org. They offer wigs with hats, which are really cute. My husband took me to a wig store up in town, but their wigs started at $125 and I don't want to pay that much money for one. Plus, I felt uncomfortable a little. It was kind of like being snobbed, is that a word? I had gotten my free hat from the gift store at the hospital, and the lady took me back and showed me the wigs, and then showed me the bras they have, for after surgery. I was on my lunch hour getting my blood checked and didn't have time to spend to get one then. Hopefully, Wednesday, I will get done earlier than last time (6 hours last time), and have time to get one. The TCHP takes less time each time, because the first time you get one of the drugs it is 90 minutes, second time 60 minutes, third time 30 minutes.
I hope everyone is doing okay and I hope you all have a nice Sunday. Maddie, hugs to you.
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I saw the sunshine thru the rain this morning. A beautiful sun rise when walking Brie, our cold breath collected in the chilled air. Mud squelched beneath our feet (paws). I will not despair, it is new day and it WILL be better than yesterday.
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there you go. Good job, Maddie.
I read somewhere on here, or the estrogen positive Facebook page about this book called Flat, by Catherine Guthrie. I'm reading that. It mentions this article: http://barbaraehrenreich.com/cancerland/ I'm reading that too.
Sunshine thru the rain - sounds like a good song, Maddie. The sun is shining in Missouri for now. Hugs everyone.
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MaddieBrie—hang tough sister, you got this. Being flung into menopause hasn't done me any favors either. I'm as mean as s#*t right now. Like ready for a bar fight. I had a mane of hair and when it dropped I was numb. I shaved that after AC #2. I'm on weekly Taxol and tomorrow I go in for #8. My head is fuzzy with all kinds of growth. Some the white fluff some real deal brown hair. We are young and these treatments are brutal. Your hubby sounds like mine, an angel. I hate that we are going hrough this, it blows.
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just trying to plan...What do you wear to treatment? and what do you bring with you? Were you up to reading or just vegging out/sleeping? Did you eat something light the morning of your treatment?
Also, I noticed Headcovers Unlimited is having 10% off (code CYBERFUNDAY) this weekend. Friends have recommended their products especially the soft sleep hats.
Try to enjoy the rest of the weekend!!
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About the hair, I had long hair before chemo and did cold capping. I lost most of it. The vast majority of the long ones fell out. I am in my 30s and just starting to turn grey...those hairs stayed, and I went largely bald on top and my remaining hair was thin enough to show my scalp.
Right now I have the hair style of a balding man with a double rat tailed mullet and the ladies who shaved their hair or just let it fall out are looking awfully stylish to me with their smooth crowns of wisdom and Sinead O'Conner-dos.
I am 6.5 weeks PFC and the bald spots are starting to grow in but it looks funky, makes me look sickly, and I have been wearing hats anyway to ward off chill and prevent my head from sun burning.
The only reason I haven't shaved it off is because it does keep my head somewhat warm still and I will have felt like I wasted the money that the cold capping cost.
I've gotten a lot of compliments on my hats though. I'm not sure if it's because I actually look stylish in a hat or because people know something is up and are trying to make me feel better.
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Flower216 I wore sweats. My siblings found a “port shirt" on Amazon and sent it to me in a chemo day box. The shirt has a zipper on the shoulder and like a 1/4 zip in the front. It is pretty fun. I think it's from a place called “Port Fashions".
My first infusion was 6 hours long so I wanted to be comfortable. I had fuzzy socks and a zip up sweatshirt and a blanket. I had books and magazines and my parents who kept me occupied. Since I was a first timer I had to sit right by the nurse's station. The only time I fell asleep was when they gave me the booster bag of Benadryl and steroids. I couldn't keep my eyes open to save my life. The lady a few chairs down from me slept the entire time. My cancer center has a snack cart - but I was there so long my Dad went and got lunch for us. The one thing I would be sure to bring is something sour if you have a port. When they flush it between bags you will taste it. It is NOT pleasant.I had lemonheads and they helped A LOT. My hair started coming out on Black Friday. I didn’t think I would break down like I did. Y’all are right - the shower was the worst! I wasn’t ready for the buzz so I went on Saturday and got a short pixie cut.
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Bookworm14 - sorry I missed your posts! I had surgery first, and my port was put in during surgery. I have my "chemo bag" packed and ready to go. Physically, I'm ready. Emotionally, not so much. I'm really nervous and anxious.
I am ready to get this first treatment done and see how it's going to be for me. I only have four to get through. Once those are done, I can get onto my exchange surgery and get this all behind me.
Honestly, I'm most nervous about the steroid effects, and the bone pain. I'm not sleeping well already - I don't need steroids to make it worse. But it is short lived......
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Has anyone else noticed that their tumor swelled and became sore after treatment started? I've had one infusion so far and my tumor feels like it did after they did the biopsies (it swelled and got sore). I'd like to think it's in response to being attacked by the chemo drugs
I'm going to ask my Dr about it but was wondering if anyone else experienced this?0 -
JennieKeaton,
Yep I understand the anxiousness! Unfortunately, I had to have a second surgery for port placement. So not fun as they had to go through my neck to attach the port .....could not get the line though the collar bone?. Still pretty sore. I also have my “chemo bag” ready! I may have over packed, but I like to be as prepared as possible. I am more worried about swelling up with the steroids (I blow up like a blimp when I get them when I am sick). I have four sessions scheduled of the A+ C and then 12 wkly sessions of Taxol. Hoping we get through this first infusions as easy as we can!
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WC3- Sorry to hear you lost most of your hair despite cold capping. I had a breakdown when I finally got myself to try on the paxman cap this weekend. It was sitting in my room for a week and I couldn't get myself to even open the package. I got a size medium and feel like it's not snug enough. The nurse at my center wasn't really helpful or knowledgeable during fitting. Wish they would better train the nurses on how to properly help you find the right size. I'm starting chemo Tuesday and it's too late to get a size small shipped to me on time. I'm telling myself screw it. If it doesn't work cause it's too big, I'll just deal with the hair loss. I guess you won't really feel the emotional impact until you actually see your hair falling out. The worst part of the day for me is every morning when I wake up and I'm reminded I have BC and have to start chemo. My daughters are 4 and 5 and as young as they are, they always have cute little comments about my appearance. How am I gonna explain the hair loss to them? It breaks my heart.Can't believe we're still using 30+ year old drugs with so many awful side effects to treat BC.
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I received a bag from http://thelydiaproject.org/ If you ladies are interested in receiving a bag from them, you can visit their web site. They look like a wonderful organization. They post on Facebook with positive posts too.
The steroids do not seem to bother me a lot, although I think I did get up last time about 2 am and watched a little TV. The Benadryl knocks me out and I've told my husband, if my jaw drops open and I start snoring, to smack me. I don't want to do that in public. Our infusion center serves free lunch to the patients and their family members, and they come around with snacks and have water and soft drinks. Wishing everyone the best this week. Will be thinking of you ladies with treatment this week, be strong, we will get through this. Sad as it is to lose our hair, I take comfort in knowing I am not alone. Dollar General sells knit caps for $1 in different colors.
Please let us know how everyone is doing this week. Your comments help me make it through the day. One of my co-workers offered to bring food over Wednesday when I have my infusion and am totally blessed. I am blessed to have met you ladies. I took a photo of the wigs when I had my blood checked, and hope to get one on Wednesday. ACS gives you one free wig. Lisa
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Asaka:
I don't have children but I have a niece and nephew who were 7 and 4 when I started chemotherapy and I was just very upfront with them about what I had and what cancer was (they already knew about cell division) and that I had to take special medication that might make my hair fall out but would help make me better. They were fine with it.
I used Dignicap, which is like Paxman but they have all of the caps at the facility and the service comes with a technician. To get better contact with a roomy cap you can place menstrual pads, believe it or not, between the cold cap and the outer cap that goes over it to press it down more.
I think most of my hair loss was from poor contact during the first infusion and then also during the 5th infusion when I was between cap sizes so we used the smaller one which was a little too small...where the sensor dug in to my scalp that is where I had the second major hair loss. I think the pressure of the sensor pushing against my scalp and the cap blocked the fluid in that area.
It was fine to do once but I did it primarily because I had taxotere and I was concerned about my hair not growing back. I think if I had to have chemotherapy again and needed a taxane I might go with taxol instead and skip the cold capping because, while it was bearable, it was unpleasant. I was groggy from the Benadryl but couldn't sleep with the cold cap on my head, and it made me feel kind of sick even with the anti nausea meds. I get kind of queasy just thinking about it. They give the outer cap to the patient to keep. It has a particular scent to it and I caught a whiff of it when I was cleaning before my surgery and even that made me queasy. If I ever have chemotherapy again I just want to sleep during the infusions or chill in a more figurative sense.
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I had my "pre-chemo" appointment with the nurse practitioner this morning. It went pretty well. I will tell you - they are big on not suffering through if there's a drug to help. She told me it's OK to take my Xanax before the infusion tomorrow (and to let her know if I need more), it's OK to take my Lunesta if the steroids keep me up (and to let her know if I need more). She also called in an RX for a numbing cream for my port, and told me I can use it on my hypersensitivity areas on my chest. Also, if I need more Norco, to let them know. She's called in two prescriptions for nausea meds, and told me to take whether I feel like I need them or not. Said if I can't eat/drink, let them know and we'll do IV fluids as needed.
She did say that while it's hard to know what side effects to expect, I can absolutely expect nausea, and it will be cumulative over my treatments. Fun!
I'm going to be doing Taxotere, and they don't do cold therapy on the hands/feet. She told me I'm welcome to do it if I want, though. I have lots of ice packs - for those who have done this, how should I do it? Is there a certain amount of time on/off to rotate?
Countdown to tomorrow.....
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WC3- Thanks for the information. I will have to have some kind of a talk with my kids. I dread it.
Also thanks for the cold capping tip. My main concern with Taxotere is permanent hair loss as well. I go to Sloan Kettering in NYC and asked my MO’s nurse if they’ve seen permanent hair loss. She told me they’ve never seen it with the patients they’ve treated. That reassured me a bit, but I still worry.
Is your hair coming back? I hope you never ever need chemo again.
My husband’s cousin was HER2 positive and she’s 6 years out NED. She had chemo and targeted therapy. Herceptin and Perjeta work really well for HER2s.
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