Chemo Starting August 2019
Hey everyone!
I was interested in starting a group for us starting chemotherapy August 2019. If there is already a group you can point me in the right direction 
My name is Kaycee, I'm 28 and I live in Florida. i'm a seasonal resort worker so I call Alaska & Idaho most the time and I also am a holistic nutritionist.
I just had my port placed and am getting more nervous about it all, but have found all these groups so helpful & hope to become buddies with some of you while we go through this process.
So how about a quick intro of yourself ! Anything like age, location, goals, fears, and jobs. I would love to learn more about you all.
My instagram is in2earth if anyone wants to add me there too !
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Welcome in2earth!
Thanks for posting and for starting the August 2019 Chemo thread -- you're sure to receive great support here as you and others follow your treatment journey together. The support here is amazing!
We look forward to getting to know you and supporting you along the way. Let us know if you need anything at all, and best of luck with your chemo!
--The Mods
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Thanks for starting this. My port will be put in probably on Aug 12th and start chemo soon after. I live in Nashville TN and I am 53. I am supposed to have 4 sessions of TC chemo, so I feel pretty lucky.
I thought the chemo hints and shopping list were helpful cause no one would be able to remember to tell you all those things.
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Ezzie, we welcome you to our community though so sorry that you find yourself here.
Please keep us posted!
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Hi all!
I'm joining this group. Will have my port placed on August 5th and TC chemo will start August 6th. Nervous for both. Trying to be as prepared as possible. The lists on here have been extremely helpful.
I'm 59 and live in Connecticut. Thankfully I work from home as a bookkeeper for our own business. Right now my daughter and and three grandchildren as visiting through Saturday, so that is keeping me busy. Tomorrow she is going wig shopping with me and to my "chemo teaching" hour with the nurse at the cancer center.
Looking forward to getting to know members of our group.
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BTW, Ezzie, I love Nashville! Great city. Hoping to go back and see some more someday in the near future.
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Yes the lists are super helpful, I'm currently on amazon buying things and trying to get my house "chemo ready" as much as possible.
I'm glad you get the chemo teaching class, that wasn't offered to me, but I think my center might have it. I should definitely check if they do. I have watched so many videos & read so many blogs... I just want to get this first round over & done with!
Just so you ladies know, I'm 3 days off from my port and it isn't hurting much now, but defintely take it easy the first few days! I ended up listening to my body and resting a lot after the procedure :
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Kaycee, what did they give you when they put the port in? I’m hoping not to be too aware. I’m okay with handling pain (many surgeries and procedures), but I get queasy if I feel tugging and pulling and unnatural things like that.
I also did a big Amazon order and will pick up the remaining items at the grocery store this weekend. Then going to organize it all
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Hello... I’m am starting chemo tomorrow...feeling nervous. Just going to jump in and see how it effects me. It is weird to be feeling so healthy and about to start on a journey that will make me feel gross. Had my port put in a week ago. My neck and shoulder muscles were sore almost like a bad kink. I think I was just tense. Try to remember to relax the shoulder. I feel strange having a bump on my chest. Like many here super healthy...never take anything..eat well...run...mt. Bike... I also chopped my hair short. I decided to take the fight to cancer not wait for it! Will see what works for me. Lots of good information here.
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My sister went through this 4 years ago (super-ironic in a sad way that I turned up with breast cancer at about the same age she did.) She has made me feel really positive about showing off my (soon to be) bald head. In fact, she says she feels sorry for anyone going through cancer that doesn't get to be bald - because "people are Soooo nice to you. People can visually see that you are going through something and they respond."
I share that sentiment, not to dissuade wigs or anything - but because it has made me feel actually kind of positive about losing my hair. IDK. It is something at least.
Amazon order is a good idea...I was starting to feel a bit overwhelmed.
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Hi Ezzie, I'm 54 and am getting the port August 12 also. No date yet on chemo, but just want to get the first one over with so I can figure out what it does to me and plan accordingly.
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Hi all! I am 59 and getting my port “installed “ on the 9th of August. I’m having a bit of anxiety about the hair loss. My hair grows really fast so the Dr said I would probably loose it quickly. Debating on a wig or just scarves and turbans. For those already with a port what should I expect. And for chemo are there certain supplies needed for home?? I am two weeks post left breast mastectomy. Drains removed, thank goodness as those were a pain. 😊. Showered for the first time since surgery and it’s was pure heaven. Prayers for you all!!
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Hey again everyone,
Hope your chemo ports are doing well after surgery ! WOW I loved using mine for the first time yesterday. It went so well & didn't hurt me at all! My nurse just said make sure the alcohol they use to clean it all the way dried before they put it on to reduce the sting. It was seriously so useful to have the port!
So I also had my first chemo yesterday round 1/4 of AC. I had a slight panic attack when she began with the A, but I got through it. Unforuntately I'm an almost 4 hour drive away, so the car ride got to me in the end. My antinausea meds have been working great now though. I had the nuelesta placed on my arm before I left abs that thing was cool and I don't think the needle hurt at all.
I've been fairly weak/tired but I made my own lunch of a tukey burger and rice and it was delicious haha. I had a nice sub for dinner as well. Besides that a homemade juice and oranges, strawberries, and apples for snacks.
I hope any of this info helps !
And to Toadism, you can find some shopping lists throughout the other blogs on here ! I got things like tissues, thermometer, claritin, miralax, and some other stuff I am failing to remember, but will be helpful to check out those blogs !
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Hi ladies! I am heading into my first infusions (TC) in the morning at 8a pst. I’ll be cold capping and icing hands and feet. I’ll let you all know how it all goes! Will be back to post more, need to try and get some zzz’s.
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Hi All!
I'm going to be starting TC next week. I had an intermediate oncotype score, and when you add my age and clinical risk, chemo made sense for me. I'll be glad to know that I did everything I could to prevent a recurrence!
I don't need a port, so hopefully my veins will be good.
I'm planning to cold cap and ice my hands and feet. Against cold cap instructions, I'll be getting my hair cut into a pixie after my first chemo since that is when my hairdresser is available. I can't imagine dealing with barely brushing my long hair for over 2 months. It would be a mess.
BeastMode I'll be interested in hearing how it goes for you! I'm stuck with the Penguin caps since my center doesn't have the machines yet. How long are you planning to ice your hands and feet (before and after)? What temperature are you going to do for the hands and feet? -30 celcius like the cold cap, or just 0 celcuis?
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I was dreading the port, now i wish i could get it sooner. My MO ordered CAT scans with contrast. I went today. They couldn't find a good vein, and boy did they try! They were wiggling the needles every which way. In the end they blew out the one "good" vein in my hand and sent me home. I had to reschedule. I'm so frustrated by all the waiting that I cried in the car. It just never seems to end.
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Hi again -
@Toadism - I 'll be getting my port on Aug 9th too, so I will be thinking about you on Friday.
Then my TC chemo starts on Aug 14th. Glad to hear that in2earth (Kaycee) got through the first one. I think I keep living in some denial by thinking this won't be That big of a deal. I think that is how I am facing all of this.
@Gomama - I do relate to the feeling that the surprises and appt and issues never end. I've had at least a couple appt thru this adventure from which I cried all the way home in the car.
When I first found my cancer they said lumpectomy. Now I've had a mastectomy, then an infection and expander Removed, now chemo. Whew. Some days it just feels like you wake up and get punched in the face.
Love and energy to all of you. ❤️
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Alright ladies, today is 1st day after my first TC infusion! Felt pretty good for the most part, no major SE’s today. I got in a workout at home, played tennis with the family and appetite was decent. The only thing I noticed so far is a slight bitter taste in my mouth but food still tastes good for the most part. I drank 4L of water. Fatigue wasn’t a problem today but not sure if it’s the steroid that I’m taking today is helping with that or not. We shall see tomorrow. I also had my first shot of Granix to help eight with WBC.
Ok so now back to yesterday:
Day 1 - Taxotere (1hr) and Cyclophosphamide (30 min), Lupron shot
Arrived for treatment at 8:15a and got situated with everything in tow (heated blanket, extra fleece blanket, cooler with ice for hands/feet, paxman cold cap, essentia water) I wore a 32degree heat long sleeve shirt, Nike warm fit jacket, a lightweight down jacket to keep myself warm for all the coldness that I would be sitting through.
PaxMan cold cap prep was 1st while the nurse got everything else ready. My husband wetted my hair, put in the conditioner and fitted the cap on me. We were ready to go for the 30 minutes of pre-infusion cooling.
Next up was ice for the hands and feet. I bought the Natracure socks for my hands and feet but we didn’t bring them this time because my appt was super early and we ended up staying at a hotel so didn’t have a freezer to hold the gel packs. So I used a garbage bag as barrier on my feet and had ice in a big bowl. My hands had vinyl gloves, gallon size bag for each hand and then ice in another gallon size bag. It was quite the setup.
The nurse accessed my port to get it ready for all the premeds. Timing was spot on by the time she did all that it was time to start the Taxotere. But before that I took a quick bathroom break (less than 5 minutes).
Got back quickly and hooked back up that cold cap. Taxotere started and the hour went pretty fast considering how cold my head, feet and hands were.
Next up was Cyclophosphamide, total of 30 minutes so by the time it finished that was my time for my hands and feet to be free of the freezing cold! We had to keep the cold cap on for another 60 minutes but man did it feel great to have my hands and feet free.
Last thing was the Lupron shot which was super fast. We packed up and left at about 1p. 1st cycle down!
Total time from check-in to check-out: 8:15a-1p
@ontarget - I iced both my hands and feet for 30 min prior to Taxotere and 30 min after. I’m not sure how many degrees it was because I went straight into ice. The heels of my both of my feet were pretty uncomfortable after I took them out of the ice but as soon as they warmed back up they were totally fine.
Hopefully this helps! Sorry if it’s too much information but I find that it’s useful even though everyone’s treatment and the way they react is very different.
I will keep you all posted as the days go by.
All of you rock and I can’t wait to hear about your experiences and also help any questions as well!
We got this!
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Hello August 2019 chemo sisters and brothers I am visiting from the August 2018 group to tell you that one year from now, life will be quite normal again. Your hair will be back, your energy will be back, and most of this will be in the rearview. It's hard to go through, but it is very empowering to realize you are stronger than you think!
Besides icing and claritin (start 2 days before and take for 7 days) here are things that helped me a great deal:
- fasting or fasting mimicking just prior to chemo (many posts about this practice on this site - MD to search is Dr Valter Longo at USC.) A brief fast or a longer period of calorie restriction prior to chemo reduces GI side effects, and in mice BOOSTS RESPONSE to chemo. A two-fer. Consider trying this! Made my SEs so much better. (After fast you need to eat very nutrient-dense diet of clean healthy foods like legumes, vegetables, and fruits... your immune system will SURGE if you do a nutritious "re-feed.")
-exercise daily even if it's a two block walk on a bad day. I saw an experienced integrative oncologist for a consult. He emphasized how important exercise is. It tells your body to work, thrive and fight. It helps you process out your chemo pollution and gets your digestion going again. He specifically recommended interval training as a very beneficial daily or 3-4 times per week minimum routine you can do with walk/jog, bike, or treadmill.... (30 sec regular effort/ 30 sec intense effort - repeat 3 times for a total of 3 minutes... then 3 minutes of total rest... do this whole sequence 3 times). Ideally 3-6 hours exercise per week.
- supplementary IVs which can make a big difference by hydration alone for anyone with really rotten SEs. I did high dose C IVs which I believed helped me a lot from a cancer killing point of view. A naturopathic physician with experience supporting cancer patients can provide these if your MD will not.
-hyperthermia: high heat on the tumor and on the lymph nodes if you have a palpable tumor. Uf you can heat the cancer cells to about 107-8 for about an hour they either die OR they give off heat shock proteins that make the cells more recognizable as invaders to your immune system. I did a VERY hot hot water bottle on my tumor and lymph node 3 x a week during chemo for an hour to two hours each time. I kept a hot pad on my breast and armpit DURING chemo to bring the chemo blood to that area.I had permanent magenta discoloration to the area (superficial burning) but all of that resolved when I stopped doing it. I could feel the heat softening the tumor between chemos.
-Ask your MO about metformin. I have no blood sugar problems but taking it for anti-cancer properties.
-Make sure you have a high vitamin D status, 60+
-melatonin 20mg (work up to it slowly) at night. Cold pitch black bedroom and regular bedtime.
- I took a bazillion supplements (largely antioxidants) that were recommended by the integrative onc (Dr Keith Block). His book "Life Over Cancer" provides a lot of guidance. Many MOs are clueless about the proper use of supplements or they think they will fight the efficacy of the chemo. In my case, I went with the recommended supplements and I had an excellent response to chemo and NO persistent SEs (other than fatigue/ anemia which resolved in a few months after chemo ended. I had TNBC and the specific supplements will differ according to hormonal status etc so go to an expert for the recommendations. he had me limit fat in my diet to <20% of calories, as well as go off sugar and empty carbs, & limit animal foods. Organic/grass fed.
Hyperbaric Oxygen - hand in hand with high dose C IVs - to turbo-oxygenate my system (which is unfriendly to cancer, which prefers fermentation). I loved HBOT when I was really anemic it was a fantastic feeling to get more oxygen in my system. It was superlative for healing radiation skin issues too.
I send everyone a hug. You can do this. Be proactive. Fight to heal!!
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I'm so happy to read all of this ! Thank you for taking the time to share all this knowledge. It's also so encouraging to hear how you're doing a year later !
Uck this chemo brain is so annoying though. I can write, but reading is super hard ! I will be getting back to some posts soon. Thanks ladies for sharing and I hope everything is going well !
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Santabarbarain, thank you so much for sharing such great information. I can’t wait to get the book you mentioned. How did you figure all this stuff out? Did you do all this on your own or did you hire someone that got you up to speed before you started your chemo?
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I am a life long nerd... but I was fortunate to meet a woman who had been treated bt Dr Block 15 years prior (when I was first diagnosed, at a BBQ). Her experience convinced me to have a consult.
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thank you again. You have given me some great tips that I can’t wait to learn more about.
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@Ezzie I will be thinking of you as well. I know what you mean. I went from lumpectomy to mastectomy and now chemo. It’s so surreal. I’m three weeks post op and still feel some pain and not sure if I am at the recovery rate I should be. I still get tired and very sore in one spot. I have to remind myself not to hunch over. But we can and will survive this. Prayers for you
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Beastmode- thank you, that is so helpful!!!
Toadism- at only 3 weeks out from a mastectomy, it is normal to have pain. I'm over 2 months out and I have some small pain left in general and it is too uncomfortable to sleep on my side. After the exchange surgery I'm told it will resolve.
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hi! Thank you for starting this thread! I just had my first TC infusion on 8/2. Feeling super groggy but still feeling a bit of the annoying steroids they get you amped on. How has everyone’s responses to steroids been?
Thankful for this thread
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Dear MJCha,
Welcome to the BCO community. We are sorry for what brought you here but so glad that you joined and reached out to our members. We hope that you will find what you are looking for from the shared experiences of others and the helpful information that is readily shared. Let us know if there is anything we can do to better enable you to navigate your way around the boards.
The Mods
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Hello All!
I'm 50 and live in New Jersey. I am starting my chemo this Friday (8/9) - the day before my son's 23rd birthday! Starting with AC for 4 sessions - going every other week. After I finish with the AC, then I go once a week for 12 weeks of Taxol. Haven't gotten my port yet, was on vacation last week, so they said that I will get it sometime after my 1st treatment.
The weirdest thing about my journey is that a week before I was diagnosed, my Mom was also diagnosed (she's 76). She had her surgery before me, and started her chemo a couple of weeks ago. She only has to go for 8 session (not sure of her drugs, but they are different than mine).
I'm learning a lot from this group - so glad that the August group was started.
Good luck to ALL!
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Hi Ladies, I'm from the April 2019 thread. I will finish my last of 16 treatments (4xAC and 12xT) this Friday.
I just came to give you encouragement. There were days I thought these 20 weeks would never end. But I stayed mostly positive about it all and I'm almost across the finish line and it wasn't nearly as bad as I thought it would be. I worked through chemo, and except for treatment days, I never missed a day of work.
Lean on these boards, family, friends for support. Stay hydrated. Try to exercise, even if all you can manage is a short walk sometimes. I made myself a motivational chemo playlist and I invited friends and family to choose some of the songs. I would listen on my walks or at the gym for inspiration.
You can do this! Hugs and prayers for minimal SEs. MM
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Hi again! I had a busy week last week with my daughter and my three grandchildren. Such a great distraction! My daughter did go with me to my wig appointment and my chemo teaching. The wig shop owner had breast cancer herself about 4 years ago. She had so much information to share. Together we decided to not cut my just-past-the -shoulder, curly, thick hair. I usually wear it in a ponytail. She told me that I will probably start losing it between August 20 and 22. At that point I will call her and pick the best day to come and have her shave it off (included in the wig price). She said to not try and hang onto it until the bitter end. I think that makes sense. I also bought a cute printed cap. The wig I chose is a straightish bob in a color similar to mine. Certainly not going to be fooling anyone who knows me. The wig itself is very light in weight. Overall, I think I'll be wearing caps a lot since I work from home.
The chemo teaching was good in the way that I got to see the treatment center and to know how the first day will go. The nurse gave me some sheets on the chemo drugs that were printed from chemocare.com. I asked a few questions and off I went.
This morning a had the port placement at the hospital. It was done by an interventional radiologist. My main concerns were if it would be placed where the bra strap would irritate it and about being extremely anxious about feeling tugging and pulling during the procedure. I was so anxious that I didn't sleep at all last night! I ended up getting up at 2 a.m. and working for a few hours. The nurse and two residents really didn't reassure me as to my two concerns. Once the doctor came in, I was a much happier camper. He had me put on my bra and then he marked where the strap was. He said he thought he could avoid that area and he did! As for the anxiety, his comment to my was that my nurse was a "great bartender" and that he would make sure I was comfortable. I did feel some tugging and pulling, but it only bothered me slightly. I was told that I did drift off to sleep, but then I started to bring my hands up to my face and they had to ask me to stop (don't remember any of that ). Overall I would say it was much less scary than I thought it would be. It's a little sore and tight now and I just took Tylenol. Hoping to sleep well tonight. My first chemo treatment is tomorrow morning. Won't be able to use the numbing cream because of the surgical glue, but I think I'll be fine.
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that’s so great that you were able to go to chemo school. I was put completely out when the did my port placement. It wasn’t sore at all and I didn’t even need to take a Tylenol, but my first biopsy really hurt for a long time.
Does anyone else think they can feel their cancer? It like a burning feeling.
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