Starting Chemo in September 2017

Travel_Girl

Paulette I still have neuropathy in my toes -- to the point that a sheet on top of them sometimes 'hurts' -- which is interesting right now because of my double MX surgery I can only sleep on my back -- so makes for some interesting times

I am going to talk to MO about it Thursday and see if she has any tips. I have been reading on line and many say Glutamate helps -- yet I found other articles that says that a form of that amino acid feeds Triple Negative Breast cancer

In the mean time, I am also doing acupuncture to try and address it. If massage helps at all, I will add a foot massage to the list -- I will keep you updated with what i find out - just in case it helps you.

OCDAmy

I don't know if what I have is neuropathy or not. When I wake up in the morning and start walking I get bad pain in my toes, ball of foot and big toe joint. It eventually goes away after I am up and moving. It is worse in one foot but it does happen in both. I also seem to be having restless legs at night and sometimes pain the toe joint. I am having trouble falling asleep. I am going to see my doctor soon but just wondering what neuropathy feels like, is it only numbness and tingling?

PauletteK

Travel - I heard several people took Alpha Lipoic Acid for neuropathy, in fact I met a woman in radiation she is taking it. I didn’t do it because I think my neuropathy is getting better each day. I am thinking to try acupuncture also, with daily radiation I might not have time to do it. Because people suggested me the person who does acupuncture is kind of far away from my radiation so I cant round around different cities on the same day.

PauletteK

Amy, neuropathy does bring some shape pains also, I read if you put a soap bar under your bedsheet it helps restless feet. I did that it doesn’t hurt.

MamaFelice

Thank you ladies for making me feel "listened to" and empathizing with my personal feelings regarding all of this. I need to make another appointment with the counselor at the hospital to talk through things on an emotional level some more. It is difficult to make my husband listen to me because he just wants it gone...no matter the cost. I am a believer in being ones greatest advocate on this journey too.

I have a lot of nodes involved....scary. My MammaPrint score fell high risk at -.27....bummer. My tumor is clinically high risk at 5.5 cm & Grade 3 (mitotic rate 2)....yuck. Things are stacked up against me. One would think I am ready to throw the kitchen sink at it, but I don't want to be overtreated with chemo when it may not be working at all in the way that highly ER+ (Mine 99%) tends to not be responsive to chemo. It kills me that there is no way to know if it is working or not....probably kills my doc too. My 5.5 cm tumor was discovered after BMX. It was hidden. So option to do neoadjuvant chemo wasn't there. And my onco would have rather used ACT as my drug regimen, but heart cannot take more adriamycin so TC up to bat. Though TC used more frequently on west coast, and I am reaching out to an oncologist in ucla for another opinion as well.

I meet with radiologist today. I had BMX in effort to avoid additional rads since already been radiated to chest, neck, clavicle from Hodgkin's lymphoma --with rads to chest the underlying cause of this BC. Radiologist will want to radiate because of high # nodes, but I have very high risk for many negative SEs both aesthetic -- my skin will be malformed, and physical-- high risk of deteriorating nerve in arm and losing use of it. All of these issues will be discussed today, and I will receive an additional opinion. Maybe some radiation "light". I def feel I would benefit from some, mainly around my nodes, but high risk. My oncologist says to put safety first when it comes to taking rads. Wonder if radiologist will say same about taking extra chemo.

We are all scared, it is normal. Tough feeling just fine one day, then someone telling you cancer brewing in your body, then having to be poisoned and made so sick when you otherwise feel just fine. Stinks.

I'm sorry Travelgirl that you are mentally dealing with BC a 2nd time. Awesome that you continue to catch it early and knock it back down! My stepmom's mother (ER+) and aunt (TN) each knocked BC back 3 times and are living in their late 80s and 90s. I am glad you are recovering well from your surgery. Back sleeping and foot neuropathy can't mix well, I agree. Need magic booties! Have you all tried B vitamins? I am taking sublingual B6/B12 daily, and I think it is to help prevent neuropathy-- but my chemo brain can't recall right now and need to check notes.... I will double check later and get back. How nerve pain across chest?

Well, I'm going to try and shut my eyes again. I really appreciate you all allowing me to vent here. Feels good just to write it all down and identify with what I am feeling. I will let you know how radiologist appointment goes. Thank you all again! 😘

mkn86

mamafelice i hope you were able to catch some sleep i’m about to try

Today marks my official halfway point for chemo and i feel proud of myself for coming this far. i have a long way to go with other stages of the treatment. but for today i celebrate completing dose 6 of 12 for taxol and chemo session 8 out of a total of 15 sessions

I seriously and honestly would not have made it this far without the ladies in this thread.

Also, need to figure out how to gain weight. doctor and nurses said i should gain weight. i’ve lost a total of 11kg since august. i don’t feel weak but i do need to bulk up a little.

I’m off to try and get some sleep tonight.

fingers crossed! always for everyone too. i’m rooting for all of you. always always.

OCDAmy

mkn, glad to hear you are half way!! Hope you get some sleep. I need to lose weight, wish I could give you some of mine.

PauletteK

Mamafelice, this is a tough path and we are all into this journey together. Hope you deal with it better. Send prayers .

Amy - how are you doing with radiation, I’m going to my 6/30 today, need to talk to my RO about my swelling, my lymphedema flares up and I hope it won’t get worse. Also my BP jumps up too, I didn’t expect this at all.

mkn86

thank you Paulette! for the prayers always and also the offer to give me your weight!

I hope radiation is easier for you. and i’m glad to see your posts that your neuropathy is getting better

Travel_Girl

Hi fellow warriors -

Mkn - to gain weight, try blender shakes - I know it can be difficult to get food down -including shakes, just try to add things like almond butter and high calorie things in shakes w/ good stuff - it helped me to keep my calorie count high enough. In short, try to drink your calories.

Paulette - spot on! My MO said that Alpha-lipoic acid is better for neuropathy than Glutamine -- she said since I already bought a tub of the later, to just use both until the later is gone. I am all for it to accelerate nerve repair both from chemo and my recent surgery.

A few other science things for any that are interested:

She also explained how acupuncture works (the science behind it) - calms the nervous system down so it can focus on the healing. I haven't yet embraced mediation as much as I think it is a good idea, it hasn't 'stuck' yet - so acp. it is ... I will keep trying to the mediation ...

Interestingly, she also told me there is a clinical study going on (didn't get the name of it) that bc survivors are randomized between a placebo and and a baby aspirin a day (or adult aspirin every other day). The science behind it is that aspirin is an inflammatory agent -- cancer is basically an inflammation. She said I would probably not qualify for the study due to my prior bc dx AND that I could get randomized for the placebo - so she said I should go w/ the aspirin and she would keep me updated on the study results - since we begin our 3 month visits once again. One baby aspirin a day, I can do -- so why not?

Last but not least - I rec'd my remote controls to do my expander fills today -- areoXpanders. It is a tiny fill of 10cc per shot, easy peazy -- so I will fill myself and check in w/ the PS on Jan 12th.

Slow and steady - I am going to shoot for under fill - until I see her and then round out any differences between that and my surgery exchange. I am waiting for the surgery coordinator to call me back, I am cleared for any date post 2/27. I am ready! Well, I will be .... and I am shooting for as close to that date as possible.

PauletteK

Travel girl - remote controls to do expander fils ... hahaha first time I heard that!!! When I finished my radiation I will follow your footsteps on the baby aspirin, it doesn’t hurt to try isn’t it?

Mkn - do what Travel suggested I’m not good in smoothies and protein drink, I also hate ensure. I lost about 8-9lbs and now I just gained 1 pound back after 5 weeks PFC. I’m okay with my weight because I was a little overweight before.

MamaFelice

Thank you ladies for simply taking the time to read and listen. Just needed a place to write and vent. It is what it is. We are all here with some form of the same story..... we have BC and we want it gone! Now someone pass me a baby aspirin and let's get moving here!

Mkn--First, congrats on 1/2-way!! Now re weight-- apparently the Taxanes are supposed to make you gain weight-- increased appetite, slow metabolism and hold water weight....maybe this is why your nurses are concerned that you have been losing if you are on taxol. I've gained 7lbs since I started. I think I was afraid I would keep losing weight once chemo started (lost about 10lbsfrom surgery), so I was practically eating 1/2 a jar of almond butter a day. Nuts and nut butters are a great way to add in extra calories-- and healthy ones too because it is nutrition that is the big factor here. Need to get the nutrients in you, and I'm with Travelgirl that smoothies are your best option. I pile in tons of good stuff in my morning green smoothie--& I don't even taste the kale and spinach that make it green! You got this! 👍🏼

Travelgirl-- I too need help in the slow down and meditate arena! Anyone have any tips out there? I am a prayerful person, but even there I can spend more time in my Bible and prayer. I did download a new app called Headspace that a friend recommended but I haven't tried it yet. Tough-- especially this time of year when there is soooo much to do--& I am so much more tired, but I am trying to engage in each step a little more rather than move through the holidays like a robot. I've spent more time sitting by the tree just talking to my husband in the evenings than I have in a long time. It has been really nice. Anyway, fill me in on meditation secrets please!

Off to try and get another hour sleep-- I seem to wake around 5:30 each morn for my BC.org role call! 😜 Have a great day everyone!

OCDAmy

TravelGirl, My MO talked to me about the aspirin study but he said he is pretty you can't take any nsaids during the study which would be a no go for me since I have a bum neck from a herniated disc five years ago. But I was going to ask him about just taking the baby aspirin every day. My sister had colon cancer and she was told to take one every day. I am still considering the PALLAS trial which combines Ibrance and endocrine therapy for early stage breast cancer. It is randomized so you may end up just on the endocrine therapy but still need to be followed the same. After rads we are going to discuss again.

I am so happy you get to have the implant surgery in February! I thought of the old SNL skit "We're gonna pump... you up" when I picture you inflating your expanders. You may not be old enough to remember that. Anyway, I am looking long down the road before I can have mine because of rads. These expanders are getting more uncomfortable and I am not happy with the way my breasts look right now (I have nipple sparing on the non-cancer breast and it sits lower than the cancer side). The PS says she can fix all that but I have to live with lopsided breasts right now.

Rads are going fine, no SE but still having some fatigue but then trouble sleeping. I am praying I have smooth sailing so I can get my exchange surgery by early summer.

I have to say that being prescribed anxiety meds has really helped me stay calm. I am glad my MO suggested it, I fell much more calm than I did even before being diagnosed.

Best to all who have moved on and those still in chemo.

mkn86

mmm smoothies sound nice i must admit i stopped making smoothies i think i need to get back to them. my aunt brought a whole pitcher of veggie juice for me last week. that tasted great. it had ginger, carrot, celery, lemon, etc

my taste buds are back this week! i had a wonderful glorious plate of spaghetti last night. compared to bland food for saturday and sunday.

i will try to work in more nuts and nutrients. and see where else i can pile on my calories without deviating from doctor's no soy, low fat, low sugar, low salt diet.

i've moved to another apartment in the city still within walking distance of the hospital. And the new place has more sunlight. will be here until i finish taxol.

I also use headspace. i started with 1 minute every day and then started with the basics pack and then the cancer pack. eventually it became 10mins per day before bedtime.

Travel_Girl

Mk - celebrate the taste buds and eat up -- extra calories when you can to even out the other times. Whatever works.

Yay on the sunlight, I find that makes such a big difference.

I am taking so many supplements right now, I had to make myself a checklist -- at some point I have to pull back on them -- just trying to give my body what it needs to heal from all of this. I see my primary care provider on Jan 12th (a new one) and will do a full panel of blood work and try to create a baseline to start the monitoring process.

The good news is, my neuropathy is getting better -- not sure if it is time, acupuncture or the supplements (or a combination) -- I don't much care - I am just glad that my toes are starting to not feel so tender, not gone yet -- improving.

Now for straight thru sleep to come back -- going to see what I can do about that. I am still only getting about 5-6 hours a night in 2 cycles w/ sleep drug assist ...better than nothing, just would enjoy a nice 8-10 hour snooze (without some sleeping drugs..) ... today marks 3 full weeks from surgery - so maybe just need more time.

Happy Healing my fellow warriors - thanks for your virtual support.

toughcookie_21

hi ladies, I haven’t been on here in a while but just caught up with the past few weeks of posts. I am set to go in tomorrow for my last of 6 TCH treatments. I too have questioned the need for 6 vs 4 treatments and wasn’t really satisfied with my MO’s response of that’s what the data says you should do. I went for a second (NCI center) and third (local teaching hospital) opinion and all said the same thing due to my her2+ status. I didn’t have any node involvement and have continued questioning the need for all this treatment, but I decided To just go ahead with the six treatments even though I absolutely don’t want to continue after 5 which was the worst by far.

Mamfelice, my eyes are a mess. I cannot see as well as I could before. Never wore glasses or contacts, but if my eyes stay like this I will definitely need them. My eyes also twitch constantly and tear up and drip so much that I need to carry a tissue with me at all times. So you’re not the only one with eye issues.

Travel_Girl

Toughcookie - woohoo on your last TCH today - you must be soooooooo happy! Don't forget to celebrate.

Congrats

OCDAmy

good to hear from you toughcookie! So happy you finished! I agree, celebrate!

Did you all see the video of the NFL player who finished his chemo and when he rang the bell, he rang it so hard he pulled the while bell off the wall. It was great!

mkn86

Thank you travel_girl! yeah i love days when my taste buds recover.

toughcookie congratulations on your last TCH!!! party time! well... after the side effects wear off at least

i already know what i want to do after my last chemo once my taste buds come back: a really really yummy plate of my favorite breakfast. thick sliced spam fried so that it’s crispy on the outside, fluffy scrambled eggs, garlic fried rice.... and maybe a waffle with whipped butter and maple syrup for dessert and my favorite singaporean hazelnut coffee. (heavy breakfast where i’m from with the rice instead of bread)

my counts were too low yesterday so my MO decided to move this week’s chemo to Friday. I was bummed about it last night. I’m still a bit bummed about it today but... hey. try again! 🙂

PauletteK

Woot woot!! ToughCookie!! Congratulations!

Mkn, sorry that you skip this week chemo, are you low on white blood count? This is one thing I hatedput so much stress on the chemo.

Travel girl - my neuropathy is getting better also, thanks God for this. Glad that you are doing well

mkn86

Paulette, not yet. just delayed by one day. instead of thursday i will have to do it friday. see if my counts are up today.

PauletteK

Mkn, how did you do on Friday? Hope things are working fine for you.

MamaFelice

Good morning ladies! And Merry Christmas Eve, Eve! 🌲

Had TC infusion #4 on Tuesday! 4 down & 2 to go!! Sure would like to be done now, but going to keep on pushing through! But I am having a new symptom that I was hoping some of you all on TC or even Taxol may empathize with...... I starting to make note of some yesterday, but this morn I am noticing increased body, joint, maybe muscle pain?? Mainly achiness in body and joints, and I am not taking the Neulasta shot so I cannot blame it on that. Assuming it is the Taxotere. I am going to read up on SEs, but of course coming to you ladies first. Any thoughts? Suggestions on how to manage? I remember mild aches in previous infusions but honestly wrote it off to other things like sitting too long. This is more chronic and obvious. Maybe a detox bath will help. Thanks for help ladies

Travel Girl-- wow-- has it been 3 weeks since your surgery already??!! How things movin? Have you seen a PT at all? I know you have put your body through so much between treatments and then surgery that perfect sleep is not yet in the cards, but it will be soon! I have learned the art of a quick nap which was never part of my norm. We all look forward to sound, restful sleep!

Ding! Ding! Ding! Way to go toughcookie!! 🎉🎉 6 rounds done-- yay! 🎉Looking forward to being in your shoes! Thank you for empathizing with regards to wanting to stop at 4 and all the eye twitching and such. These drugs really mess with you-- but I hold on to all the words of you PFC ladies sharing how the body bounces back!

OCDAmy-- My doc wants me in on the PALLAS trial as well. Let's keep in touch regarding such as you will enter that realm before me. Do you actually know which branch you are on, or do you receive a placebo?

Mkn-- you make our mouth water with your Southern Pacific dishes! Please do share more! You certainly need to keep your strength up and fight through the funky taste buds! Glad your new apartment offers more sunshine! Basque in it! Have your family and friends been helpful through your treatment so far?

Thinking of all of you! 💪🏼😍

OCDAmy

MamaFelice, I ache all over! My feet and knees are the worst right now. I'm having trouble knowing if the feet is neuropathy or arthritis. I read somewhere about chemo induced arthritis and after rads are over I'm going to talk to my PCP about it. I'm 53 and I feel like an old lady, especially in the morning. A heating pad really helps me

mkn86

Paulette, infusion pushed through Friday and was uneventful thankfully. today i’m just riding out fatigue and bone pain and sore muscles.

MamaFelice thank you hahaha i take that as a compliment. Friends always tell me i talk about food differently from most people ) these days i try to make up for things with a lot of spices so that i can taste my food.

Amy, i’m sorry to hear you ache all over maybe food with tons of B vitamins will help?

PauletteK

Merry Christmas to all of you, may all of us have better 2018,stay healthy and be safe.

Travel_Girl

Hi Gang,

MamaF - 2 more to go - you have this. As for the aches and pains, I did a lot of Tylenol and Advil, so I guess I had it too -- not sure how much of that you can take - it is still my friend and I hope to give my body a break soon. Hopefully you find some relief.

My PT starts on jan 2nd -- mostly due to the holidays and my lack of planning way ahead of time to schedule it - hopefully it helps - I have been doing the exercises recommended by surgeon and a book I have on bc surgery recovery. (along with some utube video helpers).

I am 2 months post chemo today and 4 weeks post surgery, so now I can work out! I had a trip planned to Southern Cal with my daughter this week and she woke up sick last night - so I cancelled the trip 2 hours before flight time.

Watching the hair on my eyebrows and eyelashes grow is getting very old! I need a break in the routine ... my first day back to our office in another state will be Monday, Jan 8th - gearing up emotionally for that - haven't been to the office since early August. This was going to be my 'travel practice' .. ah well ...

That is life (and lots of cancellation fees (, was just looking forward to it - so now I am trying to figure out my staycation plans. With my exercise restriction lifted, back to the gym and maybe even a steam room?

Not sure yet ... I am still 'scared' of infection in my breast recon - gotta start living again.

Mkn and MamaF -- routing for you guys and can't wait to ring that virtual bell with you

MamaFelice

Merry Christmas ladies! Exhausted from the past week between chemo and Christmas. Company leaves tomorrow and I look forward to a week of recoup and rest. I meet with an integrative oncologist tomorrow afternoon to get her opinion on my current and future treatment plan. She was a traditional MO and then changed her practice to Integrative, and I love that she is a BC survivor herself! I look forward to hearing her recommendations. Keep you posted on what I learn!

Praying for the new year ahead and all the joy and wonder it holds

Travel_Girl

MamaF -- yes, R&R -- take care of yourself - don't try to be the mama hero. We have the tendency to try to be that for our families. Just don't -- rest -- helps your body recover better.

I look forward to your update from your appointment - I am a big fan of acupuncture - didn't start it until 3/4 way through chemo and would have started it earlier if I had known.

mkn86

i passed my blood test today. infusion tomorrow. dose 8 of 12.

goodness i'd be disappointed if i was counting this wrong. hahaha but also i've shifted into the mindset that I want to maximize the effects of whatever dosage of treatment i have left. do everything to magnify the effects of chemo and maybe hope for really really good response to chemo while also being realistic.

i hope that you ladies are surrounded by love and kindness during the holidays. and a cup of hot cocoa to keep you warm.