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Starting chemo January 2018

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Comments

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited March 2018

    Haha yes, Amelia I am a bit of an overachiever (professional mountain guide for 29 years), but after axillary node surgery on Jan 2 I put in a TON of time at the gym just with range of motion and very light weights to get back my shoulder. The thing that helped the most was two massages in two weeks, really focusing on that shoulder and pressure points. My MO said to wait for massage til at least a week after AC treatment (I can't remember why..) but I did get two after two treatments. Miracles were worked!

    I still have to break through the same damn scar tissue every couple of days, but there's less and less of it. And some of the feeling in the back of the arm and armpit is coming back. My ER doc friend says that the nerve ends find one another, as does the lymph system which has clearly been interrupted. Never any hint of lymphedema from day 1 for me, but I am pretty heavily muscled.

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Hi Ladies! Thanks so much for all of the info on Taxol! I start tomorrow - and honestly I'm practically in tears of the thought of going back after having 3 weeks off. I feel so good right now - I don't want to do this again! But, the encouraging part is that most everyone has said that Taxol was easier than AC - so that helps a lot! I plan on using homemade ice baggies to ice my hands and feet tomorrow. My MO office doesn't put much stock in icing, so they don't provide anything. But, it's certainly worth a shot! It can't hurt!

    I am in the same boat as a lot of you as far as hair loss - or lack of loss. I have to say I'm extremely irrated that I STILL have to shave my legs! That was the one thing of losing my hair that I was looking forward to - but it never fell out. Just the hair on my head, underarms, and most of my nethers. I still have most of my arm hair and leg hair below the knees. I lost my hair on my head starting around day 11 after my first AC treatment. My eyebrows are at about 50% hair loss and my eyelashes have thinned, but not too bad. I expect to lose the eyebrows and eyelashes after I start taxol.

    Some of you women are just my heroes! I LOVE how active you all are staying and how you are taking advantage of your downtime in between chemo treatments. It's been 3 weeks since my last (dose-dense) AC treatment. I really was only able to enjoy this last week since it took a while to bounce back this time. But, I enjoyed easter shopping with my Mom and seeing a movie (First time shopping in months for fear of getting sick). Then Friday, my husband skipped work, my kids skipped school and we all went to the museum and to the Cheesecake Factory for dinner. What a great week! I figure, I'll get my fun in now before I get too tired from the Taxol!!! Felt so good to feel almost normal again!

    Well, tomorrow begins my countdown of 12 more treatments - then done! Well, not really done. Three weeks after I finish chemo, I'll be getting a double mastectomy and either immediate or delayed reconstruction depending on if I need radiation. But, one thing at a time and for now, I'll focus on finishing chemo!

    Hang in there girls! For some reason, Dory keeps popping in my head, "Just keep swimming....just keep swimming.." :-)


  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    Best of luck to all the ladies embarking on the next leg of the chemo journey! We got this! Please let us know how it went. I don’t know about you, but I found this forum did wonders for my mental health, if only for the ability to vent to a knowing group....

    I’m on Day 5 post my 4th TC and, to be honest, I found it much easier this time. I’m hoping that you’ll find this encouraging as it shows that the SE do not have to get progressively much worse. It helped I didn’t have the flu, of course, but I think what really helped is that I did nothing but rest over the weekend. And a walk a day. After my first three sessions, I was running around trying to be super mom, I don’t know why or what I had to prove. I guess I was just in denial that chemo is hard on my body and I need to just, well, behave like a cancer patient. This time around I slept it off like a nasty hangover and felt much better in 3-4 days.

    So take care of yourselves, ladies, and take it easy.In the big scheme of things, this is just a speedbump.

    XO


  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    I have my last chemo in a week. I have a week to get better. I am on amoxicillin( antibiotic) since Monday night. so far still no changes( or very minor). I still get 37.2-37.3 temp every evening, and it makes me feel very tired and achy. Im so over this cold!.....


    I have a lovely peach fuzz on my head:)) its very transparent(or grey, lol) . eyebrows are 50% there. Now i can see my very faded microblading i did in China. So it works as a guide line for my pencil lol.


    I can't wait for my last chemo. It is not the end of treatment, and I still will have to go for Herceptin infusions every 3 weeks, but at least this part will be done.

    Thank you Paisley2916 for reminding of Dory! Needed this very much!

    Roxy13 - I absolutely agree with you in terms of this forum being a haven for mental health.

    I have inquired about local snouzelen room(a multy-sensori environment for relaxation). it is a great place to go to relax your brain.

    Love to all.

  • DxAt37
    DxAt37 Member Posts: 32
    edited March 2018

    Oleysa, I am sorry you're sick. Like we need any of that crap on top of chemo SE!

    But I believe you will get better by the time of your last chemo.

    I just had my first Taxol yesterday, 3 more to go. so far it's pretty good but I've heard the pain starts around day 3 - so we'll see.

    I myself had a fair share of horrible complications, extensive blood clot in my arm where my port was being the biggest one. The port had to go so now I get my chemo straight into vein. What fun.

    Anyways, let's keep being strong my ladies!

  • Eschindler
    Eschindler Member Posts: 29
    edited March 2018

    Amelia01- I'm not sure. I've got to decide whether to add carboplatin. If I do, then yes, weeklies. But, if I don't, then I can do 4 every two weeks, and be done a full month earlier. IT IS SO TEMPTING to do the thing that will make me done faster, even if adding the carboplatin will be better in the long run. I am so sick of being sick! So, we'll see what the MO says on Tuesday morning. I wish you the best with your start on Monday!!

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    http://www.ascopost.com/News/4213 Here is an article on effectiveness and side effects on weekly Taxol vs every two weeks.

    Being done even two weeks earlier would be great!!!!

    Will discuss with MO on Monday.

    DREADING it!!!!



  • DxAt37
    DxAt37 Member Posts: 32
    edited March 2018

    Amelia and Eschindler,

    I am doing 4 DD Taxol but before I started chemo I saw onco-cardiologist and got pills that protect the heart from toxicity.

    I am not sure if thats the toxicity the article refers to...

    I also had the EKG before and will have one in a week and then after chemo -to ensure my heart still works the same.

    I would advise to talk to your mo about these precautions, should you decide for DD.

    I am happy with DD, will be done sooner. Cant wait to resume my new normal lif

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Started my Taxol on Wednesday. I'm doing 12 weekly. So far I'm feeling really good. Yesterday, dare I say I felt great! I know I still had the steroid working for me, but I felt so relieved that I didn't feel "sick" like I did on dose-dense AC. AC was horrible - I really needed a good 4-5 days to even start to feel better. But, Taxol is totally different. I realize I'm only just beginning and it will most likely get harder as I go, but so far so good! The benedryl made me feel loopy and I had to close my eyes and rest during the infusion - never fell asleep though. Got my steroid, anti-nausea med, and pepcid. Then Taxol - felt nothing while it was being put in. Left there starving - had lunch and took an hour nap when I got home. Woke up feeling good - had energy from the steroid. Didn't get to sleep until around 4am and got up at 6:30am to get the kids off to school. Still felt great until the afternoon when the steroid started to wear off and I was able to take a nap. Today, I'm a little more tired, but not bad. I'm also feeling cold and only the slightest ache here and there in my muscles. The dreaded constipation has set back in - ugh! But, overall, I am SO happy about how this is going after how bad AC was! I iced my hands and feet - which was harder to do than I expected. It's really cold!!!! At one point I was shivering and I had to take little breaks from the ice packs here and there. I'm going to keep trying to do it - it's worth a shot if it'll help! I'm happy to be on the final countdown for chemo! 11 more to go! Hugs to everyone! One day at a time, we are getting there!

  • Gigicommon
    Gigicommon Member Posts: 58
    edited March 2018

    I ultimately had the choice of doing 12 weeks of Taxol or bi-weekly and I chose bi-weekly. I didn't want to have to have an infusion every week for three months. After AC I just wanted to get this over with. The muscle/ bone pain is the worst of my side effects. Food tastes normal, smells don't bother me, and I like water again. Overall, Taxol has been doable. Next Wednesday I have my 3/4 infusion and I'm almost giddy realizing how close I am to the finish line!

    Whatever route you take my prayer is that Taxol will go easy for you.

  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    Amelia: I was at the Complementary Therapy session a few days ago and learned that most of what the MO and the pharmacist said about staying away from antioxidants (as a broad category) is not supported by the evidence. Several studies have apparently shown that they DO NOT, in fact, interfere with the effect of chemo on cancer cell, that they DO support healthy cells and that they help mitigate side effects. There have been something like 163 clinical trials. I was quite shocked with this info to say the least. Studies have looked a pharmaceutical grade antioxidant (well, a drug with strong antioxidant properties may be a better description) available with a perscription, Amifostine, that has many of the same positive benefits. And another one that is an OTC supplement called Glutothione (also found in several food sources)

    She also highly recommends the Sloan-Kettering alternative medicine database as a reliable and up to date resource.

    https://www.mskcc.org/cancer-care/diagnosis-treatm...

    She also mentioned an affiliated app, "About Herbs" but I couldn't find it for android, so perhaps it is just available for Iphones.. anyway, the same S-K info there.

    So, fish oils are OK! She also said that the latest research shows that soy and flax are also okay! They, in fact, block the uptake of estrogen into estrogen-sensitive cancer cells, rather than feeding them - which is what had previously been thought about the phytoestrogens in these foods. Again, surprising info!

    The speaker is affiliated with my local cancer centre and she and her students have done several lit reviews looking at the data on all kinds of products - they looked at 959 studies (though this might be a few years old now).

    Anyway, overall, a really interesting session.

    D-L


  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    It feels so good to finally feel good! 2nd day no temperature, Hurray! Antibiotics finally work! I have 3 days left before my last chemo-I will enjoy them:))


    Deaelle-very interesting information !


    I officially have gaps in my eye lashes. And this peach fuzz on my head makes me chackle ( what else one can do in this situation? ;))


    Here is an alien picture with fuzzy head, LOL


    image

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    It feels so good to finally feel good! 2nd day no temperature, Hurray! Antibiotics finally work! I have 3 days left before my last chemo-I will enjoy them:))


    Deaelle-very interesting information !


    I officially have gaps in my eye lashes. And this peach fuzz on my head makes me chackle ( what else one can do in this situation? ;))


    Here is an alien picture with fuzzy head, LOL


    image

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Look at that gap!

    And my eyebrows are one hair thick ( or thin, in thus case),LOL

    image

  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    Thanks for posting your space alien images Olesya. Made me laugh! I also have peach fuzz stubble on my head, which I shaved in the shower this morning like Walter White on Breaking Bad.

    Glad you are feeling better. Hope you have an awesome weekend! Wow - just one 1 chemo left. Way to go! Are you scheduled for radiation too, or you are really done DONE after that?



  • Pbello
    Pbello Member Posts: 83
    edited March 2018

    Hi January Ladies! I’m in the February group and will be doing my last AC round tomorrow. Yay! I am starting to prepare for the Taxol rounds which will follow after AC. I hear icing hands and feet should help with Neropathy. I found these socks that come with ice packs on amazon. But nothing really good for the hands. As you ladies are all further along than us February ones, I was hoping you could provide some input on what has worked best or icing your hands/feet. Thank you so much! :)

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    Thanks, Daelle, for inquiring and starting the info on fish oil. I'm going to go for it with 2 or 3 g a day and see how it works out. I fear not icing my hands and feet but honestly think I just can't do it ....


    Olesya -- love the pics!!! But where is the alien??? Didn't see one ;)


    Pbello - best to you on final AC! I'm heading over to the weekly Taxol group -- come meet us there! xx

    Dxat37 -- I had a heart exam prior to EC but no one mentioned any pills. From what I understand, if the heart is affected it is permanent.

    Paisley - I hope the rest of the 11 are just a smooth sailing for you!

    Love to all --- I get in a very dark place the days prior to tx. And I'm looking so horrid I really don't want to leave the house -- until fall.


  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Hello Ladies!

    Well, I thought I was going to get a break here - Taxol started out so good - but alas, it's not the case. I had my first infusion on Wednesday. Thursday - even with 3 hours of sleep - I felt great because I still had the steroid in my system. Friday, it all went downhill fast. I started getting aches and pains - which they did warn me about. But, as the day went on, it got worse and worse. It got to the point that I had constant pain all over and then, what I'm calling these pain attacks on top of the constant pain. I'd get a painful jab in the most random places. They'd last about 5 seconds and then move to somewhere else on my body. One second I'd get a pain on the back of my hand. The next, I'd get a pain in my thigh. Then, my head. Then the top of my foot. Then my knee. You get the idea. It just wouldn't end. The constant pain in my legs was horrible! This continued into Saturday and by 3pm, I couldn't take it anymore so I called the office. The nurse who was on-call called me back and suggested ibuprofen and allegra or claritin. She said she could call me in a prescription for tramadol, but couldn't get me a narcotic until Monday since I'd need a written prescription. I don't want to take heavy duty pain pills unless I absolutely have to - so I told her I'd try the ibuprofen and claritin. I asked her how long this would last and she said that she doesn't ever get complaints about pain like this - but interestingly, I was the second call she got that day due to taxol pain! Weird! I took the claritin and ibuprofen. They only ended up taking the slightest edge off and I just had to deal with it. Today has been a bit better. The "pain attacks" have mostly subsided - just random ones here and there and the constant pain is now dull and tolerable. I am so blind-sided by this. They just kept telling me about cummulative fatigue and neuropathy - nothing about pain. I'm so worried about this Wednesday and dealing with this again. The nurse was really nice and said that they would have to come up with a plan so I don't have to go through this every week. I just can't do that pain again! Feeling so discouraged right now! Really don't want to go back!!!

    By the way, Olesya - you're pictures and posts made me laugh! I love your peach fuzz - I'm jealous - I only have about 5 of those "longer" hairs so far!!! Can't wait for it to grow back!!!!

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Amelia - what weekly taxol group are you in? I'd definitely like to find that one!

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    I'm now a good two weeks out from my last round of TC, and I'm feeling more and more like myself. Such a relief! I even got a bike ride in today. I have a ways to go to return to my old physical shape, but it just feels good to get out there. One step at a time. I go in for my radiation simulation this Friday, and then start rads two weeks later, but today I'm NOT doing that. Huzzah! And I've got a tiny bit of fuzz on my head. Come on, grow faster! Hope y'all are hanging in there!

    image

  • erob321
    erob321 Member Posts: 59
    edited March 2018

    hi ladies! I hope everyone is doing well. Paisley- I hope your pain gets resolved. I took Claritin for 3-4 days after treatments whether I had pain or not, but that was supposed to be for the bone pain with neulasta.

    Also,the very last nurse I had for the last 10 min of my taxotere told me I only had to ice the tips of my fingers and my toes, not the whole hands/ feet. She seemed very knowledgeable but who knows.

    Is anyone else getting breakouts on their face? I feel like I’m a teenager again- except everything hurts and I have wrinkles, but my face looks like a pepperoni pizza! Lol!

    Okkate- I see the fuzz! You look great! Yay to getting back to somewhat normal!!

    I’m so thankful for you ladies!

  • DxAt37
    DxAt37 Member Posts: 32
    edited March 2018

    Paisley, It’s like you described all my pains and aches! I feel exactly the same! I hope we’ll fee better soon

    Jabs of pain arebetter now but they still come and go and make me cringe.

    On top of that I have this very strong radiating pain in my back-like my disc is misplaced (whatever the proper term). I still do my daily walks 1.6miles average but I am barely walking towards the end of it, kinda feeling like my legs will buck.

    I too thought I would get a little break with Taxol.

    I have 3 DD left to go- I am hoping I can manage but it’s just tough

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Erob321- Me, me! I'm like a teenager, too. about a week after TCH infusions! I was prescribed hydrocortison cream to help to manage it. Used it 1st and 2nd round. after 3rd round used only one day - the acnes just gotten less prominent, so i didn't bother with extra chemicals on my skin. However, i felt soo bad with my cold, acnes was the last thing i thought about.

    Paisley2916, Deaelle,Amelia01 - glad my pictures made you laugh:) thinking to shave it once again to even out, because the fuzz seems to grow faster on top of my head:0)

    DxAt37 - good for you doing your walk!

    Okkate75 - tell us how it went with radiation simulation( after you got it done:))).


    Tomorrow is my last chemo, yeay! cannot wait get it out of the way!

    still have to pack my chemo bag, and want to paint my nails.Purple this time(if i find it my stash) - for epilepsy awareness(it was today apparently). Shower tomorrow early morning, after all my night hot flashes.

    Question: did you period stop for the chemo duration. Mine did, however i get Lupron injections, that are supposedly protect ovaries, but i was told that even without it the period would stop. The hot flashes at night are just too much sometimes:4,5,6 time per night.


    Love to all! One day at a time, we are beating this stupid cancer!

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    For some reason I can't figure out how to post a picture from pinterest. perhaps there are some settings I didn't look for, but the link is below(if allowed):

    https://pin.it/u6u3kddlsicx53


    Chemo sucks!

    But if it sucks the cancer

    right out of you,

    then "yay, chemo!"


  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Rang my bell today! As it turned out, the clinic had it :)

    Now to handle all the side effects.

    Deaelle - to answer your question: no i am done yet.it's just a milestone in my journey. Still have to go for Herceptin infusion every 3 weeks (Edit:14 more rounds not 24 ).and the plan is to have 20 rounds of radiation. After than I am supposed to be on Tamoxifen for 5 years.

    It feels good though to have this part complete and to know that your body us amazing and can handle things!

    image

  • DxAt37
    DxAt37 Member Posts: 32
    edited March 2018

    Oleysa, so happy you got to ring that bell!

    And I love that pinterest link!

    Please stay in touch and post some pucture of tge fuzz as it grows. I hope you’ll get a full head of hair like,tomorrow

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    Yay Olesya! Ring that bell!

  • Eschindler
    Eschindler Member Posts: 29
    edited March 2018

    Hi folks,

    As it turns out, I have to do the weekly taxol because I am going to add carboplatin, which is effective against BRCA-associated cancers. So, while I was ALMOST able to do dose dense and be done in May, it looks like I'll be done in early June. So, I start tomorrow. The thing I'm dreading most is taking this steroid in about 50 minutes, and again at 3am. I HATE STEROIDS! Ladies with acne: are you taking steroids, because I bet that's what's causing it. I have weird acne, which is just red spots (not pimples) on my cheeks. So attractive!

    Anyhow, I look forward to sleeping again sometime in my life. Between the hot flashes from menopause and the steroids I'm about to load up on, I don't think that night is tonight.

    Good luck to all of you as you make your way through!


  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    CONGRATS OLESYA!!!!! A huge hurdle has been jumped! Your posts always lift my spirits :) I wish I could muster a smile here and there ....


    Eschindler - What are the steroids for, the carboplatin? I know there is a pre-infusion steroid with the Taxol of 8mg. I don't take any more than that.


  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Eschindler - i feel your pain in terms of steroids, hot flashes and lack of sleep. last chemo round I ran on 5 hours of sleep a day for the first 3 days, also i accidentally took an extra dose of steroids, so that didn't help the cause :)) and the steroids made me eat like crazy. I gained 8.8 lb(!) in the last 3 weeks. But i barely moved those three weeks as i had absolutely no energy due to cold i contracted from my daughter. Do you take any medication to protect your ovaries, or it's just a side effect from your chemo(the hot flashes that is)?

    I have had a minor allergic reaction - very fine red and itchy rush after my first round, but also had very ugly acne on my cheeks, forehead and temples. turned into a teenager at 34 y.o. lol. Wasn't sure what was the culprit - chemo drugs or Lupron injections(hormone). I was prescribed a hydrocortison cream x2 a day as needed. Used it for 1 and 2 round, for the 3rd round i used it only for one day as the acne seem to taper off on it's own. I moisturize my skin like crazy these days, so i wonder if that helped too to keep the acne at bay.

    DxAt37 - I am planning to buzz my fuzz off with an electric razor in a couple of days to even it out, as the top seem to grow faster than sides. I also developed a habit to rub the top of my head with my hand,,lol.

    Amelia01 - some days it's tough to smile. sometimes it's just a grimace.

    LIfe is beautiful, and there so many things to be grateful for!


    Found this video last night when i woke up again. It goes for 2 hours, so i fell asleep during the sound of it. and then woke up again-it was still playing, so it lolled me back to sleep. It's awesome!

    https://www.youtube.com/watch?v=ty6MKNLnqAo



    During chemo infusion my hot flushes were coming every 30 min - 1 hour apart. I had initially a turban on, but then switched to a scarf that i would toss off as the hot flash would come, and my fleece would fly off , only to be reached for in 3 minutes as I was getting cold right away.

    today I'm feeling ok. a bit tired. had a not a bad night of sleep(between running to the bathroom, as drink a lot of water, and hot flashes). Even managed to look after my daughter who is super whiny(she is sick again!) for a couple of hours while my hubby took a nap. But had to call for reinforcements in the face of my Mother-in-law, as my energy level was going down.

    Now to take Claritin, Neupogen shot and off to take a nap.

    Love to all!

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