Anyone starting chemo August 2016?
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DaraB, I had terrible bone pain from the Neulasta as well, despite taking Claritin (did you try that?) and pain killers. But by the 4th or 5th round, it seemed my body had adjusted somewhat and it wasn't nearly so bad. I hope the same will happen for you!
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AnnieTater - Hooray for no transfusion!!! Glad you are getting through your work day okay. At least it's almost the weekend and you can get some rest.
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Hi everyone, I'm just sitting and reading from all the posts, trying to catch up!
Annie, I'm so happy! Happy! Happy! They were able to cancel your blood transfusion. What a scary thought! Praying all is well with you and the baby. I'm glad to hear your MO is concerned about the baby, some Dr's get hardened with real life events.
Fireheart, good luck today! I'm in your pocket!
Willow, I was also told TC is a lot less strain on your heart than AC. I'm an AC gal so I'll be checked often as my treatment progresses. So far no lasting SEs from my first infusion.
Adawn, when I heard how much a Nulasta shot/pod costs I almost passed out! I don't think I've ever seen my hubby's face turn such a horrible shade of grey after I told him the cost! WOW! I'll have to research and see why some people are recommended Nulasta and others aren't??
Sensi, I'm hoping your big toe is feeling better soon! Have a fun time on your trip! Wishing I were going with you!
Unwilling, what a wonderful surprise! It's truly amazing the people who are put in our lives when we need them most! You need to try all of the wigs on and add pictures so we can share in your blessing! A wig fashion show!
I'm hoping everything goes well with the head and neck surgeon.
CassieCat and Mommichelle, thank you so much for stopping in to say hi and sharing your stories! It's wonderful to hear from others who have been where we are. Thank you so much!
Melpub, what? They aren't interested in the tumor you found? What kind of dr does that? Praying someone listens to you and gets on it ASAP!
Dara, so sorry to hear of your intended bone pain. I hope it goes away soon! I would have your tongue checked out, as Fireheart suggested. Thrush can take over pretty quickly.
As for me, so far no SEs with my Nulasta SO FAR! I didn't know to take the Claritin for a few days before so I walked in all naked and such! I'll go naked again this time and see what happens.
I'm off to feed my fish in our pond and get a walk in around the property before the storms hit.
I hope I didn't miss any one and I apologize if I did. Please feel free to poke me with a stick if you need to... Chemo brain and all.
Hugs, prayers and love to everyone!
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Ha. not trip for me. I've seen two posts saying have a good trip....I only wish
. Did pretty good yesterday, besides the big toe, only had one episode of D. But it hit out of nowhere, and I'm glad it didn't happen when I took the Chance my dog for a short walk. Brain is not working right now. Will catch up more later. Have a good day all
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My infusion went well (for an infusion). The art therapist came in and I got to spend a lot of time with her. The art was fun and distracting, the therapy part was even better. I definitely want her to come back at my next infusion. Also got a visit from a therapy dog. It was nice to be engaged in things that took my mind off of the machine and the drugs. Drank a lot. Tried the pickle juice - I really think it helped. I liked the taste too. For lunch they gave me a choice of a turkey or ham sandwich or a veggie wrap. Picked the veggie and it was DELICIOUS. They seriously know how to do things to make the experience as pleasant as possible and treat the whole person.
Just sitting here snacking a bit and waiting for hubby to pick me up. He had volunteered to stay with me, but I sent him off to work for at least part of the day. Want him to have as normal of a life as he can. I figure I'll be calling on him to pick up a lot at home so he should get a break from dealing with my health while he can.
WenchLori - Great to hear from you. I thought I might try to take a walk when I get home but I look out the windows and it's pouring out there. Thunder too. It's bright and sunny, so maybe we'll get a rainbow out of it. Feel free to send your storms east to us when you're done with them. We could use the rain and some cooling.
sensitivehrt - Maybe people posting about your trip are a sign you should take one. Where would you go if you could right now?
Wishing everyone a SE-free, joy-filled day. Sending much love.
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Sensi, you have two of us wishing you lots of fun on your trip! You better take advantage of our good nature and take the money and run! If we're sending you on a trip we should be paying for it after all! And Brian is off? GO! LOL
Fireheart, I'm happy to hear they go above and beyond to treat the whole person. They had food at the center I went to too but I was to nervous to eat anything. I didn't want to throw up on anybody and get a bad name for myself!
I'll get the storms shipped out to you ASAP!
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Hello Ladies.
with my infections nearly under control, it is look more like I am going to start chemo in September. I will still keep up here, as knowledge is power and I respect all of your activities here. I guess I am not in the boat after all. I hope all are well and wish you all free of SE. Keep on being strong
xoxoMichelle
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To the lady who just started the epirubicin and the cyclophosphamide Oh, this is what I had (I'm in Germany)--and I did find the first to be the worst (disoriented, feeling like you're walking through jell-o) plus I got hot when the room wasn't hot. After the fourth, though, I felt cold. Fresh ginger root does help--I pour boiling water over it and drink it like a tea, sometimes with lemon, sometimes also honey,and then chew on or eat the ginger. This does help with nausea. I'm told not to use ginger "on treatment days" and I don't. The epirubicin turns your pee red. Ugh. Whoever called it a red devil was right--also these drugs do make you bald; start picking out a wig or those little smurflike cancer caps. What's also helped is drinking a LOT--aim for two liters daily; often it's 1.5.
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MFalabela, far better to be completely healed with the infection before starting something like chemo. We're all so grateful for you starting this thread. I had popped in to the July chemo thread also, so hopefully, you can stay in touch with us!
Bone pain is much better today. I also had several calls today from nurses and even spoke with my MO. I told them about my tongue and MO said to rinse/gargle up to 8 x day with salt water. If it gets worse, I'm to call. I'd been using biotin, but will also switch y toothpaste to a sensitive one. Glad all seem to be doing OK.
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hi everyone. 8th day starting to feel more normal today, even though i had to go for herceptin today. DARAB. Im having weird mouth issues too my toungue has turned bright red and is burning. Im starting with the salt water too I have sensitive toothpaste but it burns now. I also have a film on my teeth that I CANT BRUSH OFF. Does anybody know anthing about this. ..This is so disgusting!!!! Thanks
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Mouth sores are a possible chemo side effect. My dentist told me that some people get them so badly that they have a hard time keeping up with oral care. He prescribed a special toothpaste and recommended specific floss and tooth brushes. The floss is Listerine Gentle Gum Care. I got 2 types of brushes, both by GUM. One was 517 Sensitive Care Toothbrush. That is what I am using now, it is very soft. I also got the GUM 317 Post-Surgical toothbrush. I have not tried out one of these yet. I wasn't sure which would be the best, so I bought both. I got the brushes and floss on Amazon - better prices than buying direct from the manufacturer.
The dentist gave me a prescription for one of the Colgate Prevident toothpastes. It cost me $18 for a container, but you don't use much. You are supposed to brush for 2 mins and not rinse, eat, or drink for at least 30 mins after brushing. It is supposed to offer extra protection for those having a hard time with dental care is how it was explained to me. I use it in the morning and before bed.
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hi all! Sorry I have been MIA... Was out of town for work (well kinda- just did wine tours!)... And then decided to extend it by a couple days and headed to the lake for some r&r til today and was pretty much off the grid.
So proud of everyone who have gotten through the hard week after their initial infusions! This week I am swamped with appointments and procedures before my first infusion on Friday (19th).., nervous but happy to be getting started.
Now that I'm back, I will be living and breathing this damn disease so glad to have you all!
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Welcome home, Hopefloats! Glad you had time for some enjoyment before the coming week. My week was insane. I even cancelled an appointment last night so I could get rest for today's infusion. Hoping being busy keeps your mind occupied.
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I hear everyone on the crazy appointments! I have 5 myself this upcoming week. Three of them on Thursday alone!
I think I had my very first breakdown tonight since starting this crazy BC crap! My Mom set me off by insisting that I have to take her to an appointment on Monday. I told her absolutely NOT! Her appointment is in a town that is 1.5 hours one way. I told her it wasn't happening! I have 5 appointments myself and I have to get her to 2 of her appointments. I refuse to add another one this week. I've never talked to my Mom that way before. By the time I was done I was sobbing and walked away! My hubby was waiting at the top of the stairs when I came out of Mom's basement apartment! Then I had to go over everything again with him! I calmed myself down and went back to talk to Mom and I apologized A LOT! Hubby decided I needed a break and he took me for a drive. When he got in the car he patted my leg and said "So, that's what a breakdown looks like?" He told me that he was proud of me for standing my ground and extra proud for being the bigger person and apologizing profusely. I returned to talk to Mom when we got back home and she apologized to me also. She said she just misses me so much that she forgets why I'm out of sight most days. My brain can't react that fast anymore LOL
Vent over, thank you!
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Curious thing with Nulasta: I'm in Germany (Golden Germany!) where health care coverage seems to be better, even though my insurance is not "the best," but "pretty good." I was told I had to take the Nulasta--also patients are expected to inject it themselves. The techie comes in with a saline solution, shows me how to grab a fold of abdominal skin and inject. Makes sure I know how to hold the hypodermic (there are instructions on this in six languages) because "If that breaks, it's 1700 euros!" (my estimate: $1500). Yikes! After the chemo, I am sent home with a plastic bag of pills that I take at specific times, plus that hypodermic of Nulasta that goes in the fridge until the day after chemo, and at 6:00 p.m. (or later) the next day I nerve myself, sit on my bed, wipe the area I'm going to puncture with one of my teenage kids alcohol-laced acne cleaner pads, and then inject myself. This is the part I hate absolutely the most. Once I hesitated, and a droplet escaped, and I thought, "There goes 20 euros!!"
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So sorry to hear this about the Nulasta and bone pain: I didn't have that but do hear these weird snap-crackle-pop noises that my bones now make--they never made those noises before!
I do think exercise helps. I force myself out on walks. Also drink so much water I'm peeing every two seconds.
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I just found out I have to have chemo so I'm guessing I'll start this month. Meeting with MO on Monday so will know more then. My OncotypeDX is 40. All surgeries on hold for chemo I guess. Haven't done any research on chemo--hoping if I didn't think about it, I wouldn't need it. So now I need to do massive research this weekend so I know what to ask the MO. Any suggestions would be greatly appreciated.
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WenchLori - It's absolutely okay to have meltdowns. And it's just as okay to stand up for what you need. You don't have to be obnoxious about it, just real. I'm so glad to hear you and your mom worked things out and both apologized. This BC is happening to the people around us too. While they might not be able to truly get what we're dealing with, sometimes we don't get them either. Your hubby sounds like a real keeper. Glad you have him!
Melpub - Your injection story made me chuckle. Hope you don't lose too many droplets of that liquid gold.
LisbethS - When the surgeon told me my dx and recommended I see a MO about chemo, I asked her right away what to expect. She told me what was the usual chemo course. So when I ended up talking to the MO I had a basic idea of what to expect. I'd just be careful where you get your information. Google can send you down all kinds of rabbit holes. Try to find the most reputable sources. You might also be able to find threads here where people have similar diagnoses and see what treatments they are doing. I'm sure the MO will give you drug info for what he/she recommends. If not, ask for it. Make sure you take good notes. Ask them to spell words you don't know so that you can look things up later. Take someone with you who will listen as attentively as you will and will also ask good questions. If there is a nurse navigator involved in your appointment, see if she will be taking notes. (I had that - so I could mostly just listen.) Write out all your questions and make sure you get them all answered. Find out who you should contact with more questions and how to best get in touch with them. Many health networks have online services where you can send a doctor a non-urgent question. Also, don't hesitate to get a second opinion if you are just not sure or if you are not feeling heard. This is a big decision. You will need to feel at peace about the choice you are making. Yes, you want to get your treatment sooner than later. But don't dive into anything that doesn't feel right. I hope I've helped. Praying for you. Oh...and with along with your massive research, make sure to make some time for yourself this weekend to do something that has nothing to do with BC. A mental break can help your thought process so much. Hugs!
Well, it's the morning after. I actually slept well this first night. Decided to sleep on the day bed in our downstairs family room. I think I got a good 6 or 7 hours straight. Woke up feeling well. Fed the kitties and bunnies. Then thought about coffee. Turned on the Keurig and got this very light wave of nausea. Pulled out a tea pod rather than coffee. Took a Compazine and waited 1/2 hr. Felt fine so made some egg whites with melted cheese. Went down wonderfully. Other than that bit of nausea I've got a slight headache, but thinking that could be related to allergy season or stress considering where it hurts. Going to spend the day resting. Hope to get a walk in later this evening.
Looking forward to all of your updates. Praying you are all well and avoiding SEs.
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Last night, I really wanted a spicy sandwich called "The Gabagool" from an Italian deli nearby. It has cappacolla and cheese which I love! Unfortunately, it seems my tastebuds have headed south for the winter, and I can't tell anything I'm eating! My tongue really hurts and has deep cracks in it and then almost raw areas. It's weird because my mind tells me what something should taste like, but then nothing! I'm still rinsing 6-8 times a day with warm salt water and Biotene. I CAN eat and drink, just have no flavor with anything! My DH got some frozen yogurt which I thought would be really good on my tongue. It felt good but couldn't tell without looking what flavor it was. Bummer. MO said to let them know if it got so bad I couldn't eat or drink. At least no nausea! I'm going to try to go to a jewelry making class today with a couple of friends and really looking forward to it. I'll share what I make when I get back.
Melpub, we have a self injector pod we can use after chemo. My MO wanted me to come in the first time to make sure I didn't have an allergic reaction, but next time I'll do the pod. Save me a couple of hours of driving right after the chemo.
Lori, I'm so sorry about your meltdown, but it's so completely appropriate! Our family and friends just need to know that for right now, it's all about us!
I'm trying to ride a stationary bike at least once a day. It's really hot here, so not feeling the outside walk till the triple digits break! My mind hasn't caught up with the chemo yet. I think I want to do something or eat something, but then reality sets in and it doesn't happen. I know they said it's important to keep weight up during chemo, so the formulas don't have to be changed, but it's hard to just keep eating if there is NO flavor at all.
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DaraB, thanks for writing. About the mouth cuts and sores--a friend who had been through chemo said it really helped to bring a thermos of ice chips along and suck on them during and after treatment. Here in Germany, however, they don't approve of this--they would rather I try chamomile and other herbal teas. I like teas--chamomile and fennel are fine, especially for tummy problems. Have not yet had the mouth sores--I'm told these are practically guaranteed with the Paclitaxel--but food does not taste as good, tummy is always a little weird. I had been told NO WINE AT ALL by one doc and ONLY ONCE IN A WHILE by another, so when we were on vacation I tried one glass. But it did not taste that good--I was reminded of the time I tried a sip during a queasy first trimester of pregnancy. I've been told to try alcohol-free wine. One of the acupuncturists raved about how wonderful it was. Blccccch. Grape juice is better--with a little water added.
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Hi all, it's been a few days since I'd checked in....monday was my first infusion day so today mark day 5. I am feeling good...still?....a bit of a soar throat started on late day 3.... and it comes and goes...sleep ok...but always get up once or twice in the middle of the night...I have never slept through the night once since chemo. I do my daily walk, yesterday was the only day (so far) I kinda lay on the couch to watch the olympics....no day time naps.....
I do wanna add that Wed morning, I got the news that I am BRCA 2 +...I was completely crushed, but I am back up again. I will NOT allow BC to defeat me nor being a gene carrier. Now I know and will know what I can do to further prevent this horrible decease from coming back. Knowledge is power.
My hubby has purchased me a book call -anti cancer. Strongly recommend it.
Dara B- did u also try baking power mix with salt? I rinse after each meal and before I go to bed...
WenchLori - it's hard - I had a melt down too wed when I found out about the gene thing....i am much stronger than I think I was...we CAN and WILL get better....
Annie - you are my inspiration....pregnancy and chemo is hard enough on its own...hugz
Hope everyone can enjoy your weekend and can catch some olympics.....
Hugz xoxoxoxo
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I'm also having more mouth problems. Rinsing with warm salt water doesn't seem to be helping much but I'll keep going.
I got on the scale yesterday and I'm 8.5 lbs down in just a week. I still have tastes and I'm eating several times a day. I'm constipated so not dropping weight due to diarrhea or anything like that. I'll keep a close eye on it, if I drop more this week I'll definitely call my MO
BBL
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Hi everyone,
I haven't written much but i want you to know i really appreciate reading what everyone has contributed here. It really helps. Extra special because it is almost in real time, so i feel we are all a part of the momentum, making progress together.
The practical advice and chuckles here and there are priceless.
I will be receiving my first infusion on Thursday, and intend to be a part of the pickle juice club. I will toast to all of you.
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Lori, that's an awful lot of weight to drop. Please be very careful. My chemo nurse said it's important to keep weight up as it means the formula needs to be changed if weight changes. I understand though. I"m have such a hard time eating anything with my mouth right now. Last night I tried just sucking on ice chips which were great while I was doing it, but then the pain came right back when I finished them. I will definitely bring ice chips and popsicles for my next infusion. I guess it's like cold capping for the mouth! Even my ears hurt because of my tongue. I see my MO tomorrow so will ask about the magic mouthwash. I've heard of it. I'm hungry, but everything is torture to eat. Lori, I get constipated after surgeries so went ahead and started using Miralax which my pharmacist recommended. I've had no problems at all using that.
I'm trying to stay active right now, even if I don't feel like it. Went to a hammered copper jewelry class yesterday at our local art museum. I went with a couple of friends and had fun, but then came home and crashed. I"m just a little worried if chemo is cumulative and gets harder SEs the more infusions you get.
All of you who are working while doing this are my heroes! Maybe it's good to force yourself to get up and move, but boy you guys are just so strong!
Tunegrrl, will you be having a port? It seems you get the metallic taste with the port. I"m going straight into the vein, so no metallic taste. If you're also getting the Neulasta injection, be sure to start Claritin the morning of the injection to help ward off bone pain.
Scarysadday, so sorry about the genetic report, but it is so important, not just for you, but other family members to know about the mutation. Hoping you all have a nice Sunday and storms and heat stay away!
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today is my last day of "normal"... A surprise party for my mom... And the first time most of my family has seen me since my diagnosis/BMX. I'm looking forward to seeing everyone and dreading it all at the same time. I have my chemo class tomorrow, port placement Tuesday, blood draws Wednesday and my breast cancer psychologist appointment Thursday... All in lead up to my infusion #1 on Friday morning. It's a busy work week too- as I try to get a bunch of meetings done since to sure how much energy I will have week one post chemo!
Feelin a bit overwhelmed! So many unknowns. All my "planning" is done... Chemo bag setup, meals prepped etc.... Now I just need to trust the unknown! Thank God for you guys!
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Dara - So sorry to hear you are having that mouth pain. I'm experiencing dry mouth and hoping it doesn't progress to anything worse.
Hopefloats - Enjoy today! Sounds like the same busy week I had before my first chemo last Friday. It can be overwhelming to cope with all the appointments on top of the diagnosis. It's impressive that you have your chemo bag and meals ready to go so early. As much as I tried to be prepared, I was still rushing around the morning of my transfusion like a chicken with her head cut off.
This has been a very lazy Sunday. I managed to get to church but then felt tired when we got home. Sat down in front of the TV to watch some Olympics or a movie and crashed for about 3 hours. Hoping lots of rest today helps me to handle a full day at work tomorrow.
Have those of you who have had a few infusions noticed your SEs intensifying or changing over the weeks? Do you have a pretty consistent low day, or does it change? I've been keeping notes of how I feel and my SEs so that I can note any trends.
Wishing you all a wonderful rest of the weekend!
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Hi all, especially Lori. Just wanted to let you know I tried the baking soda instead of salt mouth wash. It was much better and didn't sting my tongue and lips the way the salt did. My sister said there is also a prescription paste (as well as the magic mouthwash) that helps as well. I'll ask about both tomorrow. I think taste buds are coming back a little. I could taste the chocolate in my protein shake a while ago. Yea!
Hope, just take it one day at a time, and don't assume you'll get the same SEs. I would recommend bringing a thermos of ice chips though and sucking on those. Mouth problems suck!
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Dara- yes... The mouth sores scare me. I have the magic wash, Biotene (paste and rinse), moisture lozenges and soft tooth brushes at the ready. I will also be sucking on ice while I ice my fingers and toes and really hope I can ward it off.... But like you said- who knows!
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Hello- this is my first post- I was just diagnosed last week, and met with a surgeon and oncologist shortly after. The recommendation is chemo first for me, my teaching appt is next Friday, and I'm guessing I start the following week. I'm jumping all over this board but thankful it is here, and I'll figure out the best way to read it soon I hope! I'm currently prepping for a colonoscopy tomorrow- they're squeezing it in as my mom had breast cancer twice and then colon cancer. Fingers crossed all is well down there as the oncologist already advised the chemo drugs for breast cancer won't kill anything down there- go figure!
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I was at the cancer center all day on Friday. First, I got to have a blood vessel that keeps bleeding in my nose cauterized, and he wants me to have a brain and a maxillofacial CT, not because he suspects cancer there, but because he's concerned about my morning headache and eye ache - it may be a sinus problem.
Then, off to my surgeon's nurse/PA to learn about my port insertion and care. I already knew about insertion, where it goes, blah, blah, and there was a short summary about showering for the week after insertion, and more importantly how to prep my port for chemo. I have been given a prescription for Emla cream, which is lidocaine and prilocaine in a cream. It is an uber-strong local anesthetic that is applied one hour before chemo starts, then covered with plastic wrap to keep the cream from being lost on clothing, etc. The longer it is left on, the more numb you become. It can be left on for up to 4 hours for surgical procedures, but I'm not to do that! I can smear some petroleum jelly around the outside of the port, too, so the plastic will stick even better.
After lunch, we had chemo class with a group of us newbies. It covered all aspects of medicating, dealing with side effects, nutrition, knowing when to report something, etc. They never heard of pickle juice use in chemo. They, especially including the MO, HIGHLY recommend the following: 1 cup of water, 2 teaspoons of honey, and 2 teaspoons of apple cider vinegar. They said warm water; I think cool would be more appetizing. They want us to bring a bottle full of that mixture and sip it during chemo and any other time we feel nauseated in addition to our antiemetic drugs, and lots and lots of water; at least 100 oz. per day is the recommendation. We had a tour of the patient library, the community support center, and the infusion floor. There's a boutique for bra fitting, mastectomy supplies, wigs, and lots of other things for breast cancer patients. The infusion rooms have space for 4 people in each, who can each have a companion, and quite a few private rooms for those too vulnerable to infection to be with other people. They are very, very nice.
I sat there remembering a beverage I made last summer called a shrub, and wonder if that will work. It will certainly taste better. You simply chop 1 cup of fresh fruit (I love blackberries), add 1 cup of sugar, and let it macerate for a day or two in the refrigerator. Strain it and use just the resulting syrup. Add 1 cup of apple cider vinegar, shake well, and return to the refrigerator for a day or so, until all the sugar is dissolved. Add some club soda to taste and serve over ice. I usually added more sugar, but I'll try honey instead. I couldn't get my fill of these for weeks! Use any fruit; berries, peaches, plums - all are good. I'm going to try this for nausea.
They also added 1 tsp. of glutamine powder twice a day to up protein intake. It can be mixed with a smoothie, plain water, or juice. I'll get 1,000 units of D3 twice a day, and 100 mg. of B6 twice a day, too.
My large backseat basket is half finished. I had to go back to the store for more interfacing, but its going to be BIG. I also have to make a larger meds bag. My prescriptions had to be ordered and they'll be ready tomorrow. I asked the doc about Claritin. He said no, that he prescribed a large RX only dose of Allegra instead (180 mg.); said it works much better than Claritin for bone pain. I listed all my home meds, the instructions for taking them, and the chart for the steroid schedule on an index card and laminated it to keep in my meds bag. I got a new pill storage box to keep each day's meds in. I will use my beach bag as a chairside bag to hold lemon drops, some roasted almonds, my tablet, a book, maybe some lap-top crafts, a journal in which we are to record any side effects to drugs, what works and what doesn't, and any comments we have. Whatever will keep me occupied for all those hours! My journaling and any questions will be addressed by the MO at each session. We'll take some ice with us and buy more there for icing me and my lunch. Frozen grapes might not last, though. Also will send Hubs for popsicles; plain ice gets old.
I get my port on Wednesday. My first treatment is on Friday. Gulp.
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