Starting chemotherapy March 2017

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Tara17
Tara17 Member Posts: 386

many ladies on this site have mentioned how useful it is to participate in a thread with other women goign through chemotherapy at the same time. Therefore starting a thread for women starting chemotherapy in March 2017 and continuing chemotherapy through spring and summer of 2017. Wishing all the ladies here all the best!


So Inspired by all the strong supportive amazing ladies going through the challenges of chemotherapy together!


Below i am cutting and pasting part of a post from soxfan75 --an extremely helpful post worth a read for anyone preparing themselves for mastectomy :


"I imagine the type of mastectomy and reconstruction option you end up having ultimately affects the pain. I can only speak about a mastectomy with tissue expander placement. If this is what you're having, you'll probably feel a lot of chest pressure after surgery because they put the expanders under the pectoral muscles. I don't recommend laying down (even partially propped up) unless someone is there to help you up. I like to think I'm in pretty good shape and getting myself out of bed was the most painful for me. I slept practically sitting up for a good two to three weeks.

The drains are a pain. You won't be able to shower until they come out and that could be up to two weeks, so be prepared for that. I didn't want to lean into the sink to wash my hair so I went to my salon every three days and had my stylist wash it. My surgery was pre-chemo so I'm not sure if that will be an issue for you.

I look at the scarring and get a little down wondering if it will be less noticeable. The physician assistant (a BC survivor) at my plastic surgeon's office showed me her reconstructed breasts a couple of weeks ago and it made me feel so much better. I'm sure the scarring will fade.

If you're doing tissue expanders, I'm not sure what bra size you'll be going up to, but don't waste a ton of money on special bras because as you get "expanded" you may have to change bra sizes. I found these $5 Fruit of the Loom bras at Walmart that were extremely comfortable. They have pockets with removable pads. I also found (at Walmart) these water-filled push up pads that I bought in two sizes, B/C and C/D. They were $7 for each set and fit nicely into the bras. I found those extremely helpful in adding volume to my somewhat flat chest. As I got fluid added, to one side and not the other, I just used the bigger pad on one side and the smaller pad on the other to even them out. They were fantastic and so much cheaper than the $50 inserts you see on some mastectomy product websites. I believe they also have silicone push up pads but I didn't find those to look as natural."


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Comments

  • floydee48
    floydee48 Member Posts: 3
    edited March 2017

    Hello all! I'm starting neoadjuvant chemo tomorrow and I have a whole spectrum of emotions. Nervous, angry, excited(ready to start kicking this cancers butt) and mostly just anxious as the whole process is unknown. I have no idea what to expect. I went to cut my hair yesterday and had a meltdown and couldn't do it. I was trying to take control of the situation and it just didn't pan out. Thank goodness I have a supportive husband who has been amazing. I'm wishing you all the very best. I'm so thankful for this website and all of the women willing to share their wisdom and insight. Taking this one day at a time. Thank yo

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    floydee48 --it's normal to have all these emotions. Every woman processes these mixed emotions differently ---one of my friends told me --- just stay positive, let everyone around you be strong. Honor and respect all your emotions, good and bad and mixed . Acknwoeldge the fear , the anxiety and then let it flow out of you, creating the space to receive all the love and support from those around you. You are going to do great! If you don't want to cut your hair, simply don't. I didn't cut my hair --couldn't bring myself to do it, had planned to grow out my hair this year and it's so long, but now that's goign away ----so am hanging on to my hair as long as I can ; so each person processes their own journey their own way.


    I am going for my second adjuvant treatment today . Nervous, taking it all one day at a time.

  • carolina_girl63
    carolina_girl63 Member Posts: 29
    edited March 2017

    Good morning ladies, I start my chemo this Thursday March 16. I'm anxious to get started and get this over with. Right now I am scheduled to get four treatments every three weeks. I'm doing Cytoxan and Taxotere. I think my biggest worry is my nails. I know that's strange but it sounds painful !! I cut my hair this weekend and I hate it!! Of course my husband tells me he loves it and I know that's a lie...he hates short hair. But you gotta love him because he always tries to make me feel better. I look forward to any advice that anyone has. I've armed myself with all kinds of "stuff" that's supposed to make this a little easier. I feel like I've been to class and I am getting ready for my test.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2017

    My sister started chemo 3 years after me--I bought her a gift that offended her a little, but during chemo, she called one day to say it was the best gift anyone had gotten her - drum roll....

    Rectal Wipes!  Any brand will do!  Who knew rectal tissue is very thin, can bleed and be very sore from chemo.  It is the ahhh when using these wipes.  Have them ready so you don't have to send someone out for an emergency run to the store!   You will thank me! 

    Sending all my best to all of you!  You can get through it!


  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2017

    hi ladies

    Just had my first weekly Taxol dose of 12. It was OK! I was terrified and took a lorazepam, but they managed everything so well I felt quite calm. Ice cap and Elastogel mitts and slippers (I brought them in in a cool bag) helped. Out in 4 hours. Nb you can't read books or do anything apart from listen to audiobooks or watch movies if you have the mitts on. Have Evonail on nails and lots of pills to take tonorrow

    Hope this helps others who were as scared as me!

  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2017

    hi Carolinagirl63 I used a European product called Evonail on my nails. I'll let you know if it works. Other ladies use black/dark nail polish (organic if you can get it) to block uv light to nails for Taxol type chemo. I also used Elastogel hypothermia mitts and slippers on hands and feet. Will let you know if they work



  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    Denise thanks for the tips. Looking at your signature you are five years out of treatment and have lovely hair! So inspiring to hear from you !

    Thanks for that unique self care tip--this is why I love this site ' the level of self care advise from ladies who have gone on this journey before us and are willing to share their wisdom and kindness.


    Tinker bell -- I will checkout even ail. Looks like you and I are in the same phase of treatment right now with weekly taxol -I got my second weekly taxol today. I am gettign taxol and herpcetin for 12 weeks and then herceptin for nine more months.


    Carolina girl 63 --not at all strange to hear about your concern about the nails! Today the chemo nurse was talking about nail side effects with me and I am not looking forward to that. I was never much of perfect hair, perfect nails person but the thought of a temporary loss of these things, which are subconsciously part of our femininity , is defnitely a very valid emotion to experience.

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    another question . For those of you who underwent sentinel node biopsy , did anyone develop lymphatic cording afterwards and any tips regarding that ?

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2017

    I've had mild cording. A few sessions with a lymphedema-trained PT took care of most of it. I'm now working out the rest with LE nurses as I also receive scar release.

  • Alert2017
    Alert2017 Member Posts: 14
    edited March 2017

    Tara17 sounds like we are in same train! I had my port put in on 3/7 and started my treatment of taxol + herceptin 12 weeks, weekly. I had lumpectomy on 1/12/. I had benedryl and a steriod as part of the premeds infusion,so I had insomnia that night after chemo and was "Happy high " the next day. I have felt very slightly queasy and have had some reflux , but feel basically ok. I work from home, so I have forced myself to go to they gym or walk everyday in hopes it keeps me sane and feeling good. I have medium fine hair and they tell me on this protocol, i may only have thinning hair, but I already have a wig and head coverings since I expect my fine hair will end up worthless anyhow. How are you feeling? they tell me that taxol and Herceptin is "chemo Light" compared to other protocols- we should count ourselves lucky

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    Hi alert2017 --Sure sounds like we are on exactly the Same train! Onwards to our destination with hope !

    I got my first taxol/herceptin on 3/6 and my second dose today. First week was a bit rough--mainly because I thought that since this is "chemo lite " there won't be any side effects which was naive on my part. Couldn't sleep at all the night of the steroids and the lack of rest was tough to handle, very dry mouth and dry throat due to Benadryl which made swallowing uncomfortable and a dry cough and then as these got bette developed such bad and muscle muscle and bone pains, became a creaky rusty lady who couldn't move without holding on to my joints --so this week am better prepared with meds to handle all if this --- so many of our sisters on these boards are getting more toxic regimens and I admire their strength,

    I have stopped workign at this time --developed bad lymphatic cording after the sentinel node biopsy which was very painful, coudlnt move my arm--much better but doing PT for that. So for now, I have stopped working

    I want to exercise regularly ---the recommendation is 150 minutes of exercise a week I think from what I have read. So 20 minutes on treadmill every day

    I have lots of thick curly hair --- I bought some cheap wigs off amazon as a lark; they will suffice. They told me I may have only thinning of my hair so for now I haven't invested in a more expensive wig --those run around atleast 700-1000 dollars and I was thinking I might put that money towards massages etc if the pains persist


    I see in your signature, you wrote IDC -papillary. I also had IDC micropapillary --my understanding is that this has a higher rate of local recurrence potentially and I want no part of worrying about abnormal MRI etc in the future --so I plan to pursue mastectomy after chemotherapy .


    Let's keep comparing notes on our symptoms and share tips!


    Denise G from Ohio is five years out and she posted soem tips above too --made me feel so inspired to hear from a happy healthy lady five years out!!


  • bruinvol10
    bruinvol10 Member Posts: 8
    edited March 2017

    Hello ladies! I found this website a few weeks ago, but this is my first post. I will start my chemo next Monday, the 20th - Taxotere/Cytoxan. I have been so worried about my hair (ordered cold caps today) that I didn't know to be worried about my nails? Right now they have gel polish and I guess I was assuming I could keep that up? I will have to go read up on this! So much to process in such a small amount of time!

    I am happy someone started this thread! Thank you :)

  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2017

    me too, I had cording. I saw a physio who said my range of movement was good and it would probably go away by itself if I stayed active. Keep doing the exercises they give you

  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2017

    Neuropathy

    Very disappointed that the pins and needles I am feeling in my hands and feet post chemo are probably peripheral neuropathy according to the team. Had my first weekly Taxol yesterday. I feel fine otherwise but this was my most dreaded side effect and one I was hoping to ward off with the cold gloves and slippers. Anyone else experiencing this?


  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    bruinvol --fornails they offer cooling of nails and feet. For myself, I chose not to do cold cap or cooling of nails because it just felt like adding time and steps to treatment day. However, cooling of nails may be right for you and you should ask about that .


    Tinker bell--glad to hear that you are doing well from the cording standpoint. I will keep up the exercises , for neuropathy -- people talk about glutamine and B6 vitamin supplement on these boards. You should ask your doctor about checking your B12, B1, and B6 levels and consider glutamine and B 6 supplements. Ask about acupuncture --that also is supposed to help. It is disappointing to develop neuropathy --stay strong and explore these solutions. All the best to you!

  • tinker-bell
    tinker-bell Member Posts: 62
    edited March 2017

    thanks Tara17! I'll ask my onco about all those vitamins. He's said OK to B6 so I am taking that already, I might ask if he can test my b vitamin levels generally to see if there is a deficiency.

    Good luck getting the cording sorted! It is quite uncomfortable isn't it but I've been told that the uk approach nowadays is to wait for the cord to 'snap' by itself rather than intervene. Not possible if you're inable to move freely though!

  • carolina_girl63
    carolina_girl63 Member Posts: 29
    edited March 2017

    NatraCure Cold Therapy Socks (Small/Medium) (A705-CAT)

    This is what I bought for my feet to keep my toenails cold. It comes with four gel packs to freeze so I plan on using two for my hands. I'm just going to use plain old socks to put on my hands with the frozen gel packs inside. My first treatment is on March 16 so I don't really know if this will work or not but it's worth a try.

    NatraCure4.4 out of 5 stars 401 customer reviews

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    • NatraCure Cold Therapy Socks (Small/Medium) (A705-CAT)
  • bruinvol10
    bruinvol10 Member Posts: 8
    edited March 2017

    Thank you so much Carolina_girl and Tara17! I just ordered the same gel socks and will have them before I start. Headed to the vitamin store today to grab some of the supplements I have read about on here too. On my list now are silica, keratin and B6. Any other suggestions?

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    I would make sure to clear all the supplements with your oncologist bruinvol10. Glutamine is also something to consider for nerves

  • nkkw
    nkkw Member Posts: 1
    edited March 2017

    Hello: Good luck with your treatments. I just had my third treatment ( of 4 ) on Monday. Overall, it has gone fairly well. Hopefully, the same for you but I do know the feelings of anxiousness before getting started. While everyone is different I did experience hair loss about 10 days after my first treatment. I did not cut it prior to starting. Each day it staring coming out in clumps and by the fourth day my husband shaved it off. Of course, I hated it but I'm now used to it. I got a wig and scarves and this works fine. As for my nails I am just now starting to notice a slight darkness to the nail. I use solar oil on them every day and( always have ) I think this has helped. Something you might want to consider. I also read it is okay to use nail polish so if they get too bad I will try that when I am done.
    Again, good luck with everything.
  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    thanks for positing nkkw. Glad your treatments are going well. Good luck to everyone with all treatment

  • MommyErin
    MommyErin Member Posts: 187
    edited March 2017

    Hi ladies. Starting treatment next Wednesday. Herceptin, Docetaxel, Carboplatin,and Pertuzumab. I'm hoping I tolerate the drugs since I'm stage 4, HER2+, so my oncologist wants to be aggressive. Feeling totally unprepared though. I received the official diagnosis yesterday, pet scan and treatment plan today. Need to get started on a shopping list I guess

    So, besides the supplements, are any of you following a specific diet? I'm planning to eliminate sugar and maybe get a juicer and go green smoothie crazy. So much conflicting information out there though.

  • Soxfan75
    Soxfan75 Member Posts: 115
    edited March 2017

    Hello ladies,

    I'm getting ready to start chemo 03/23/17, although I still have to decide on the treatment regimen. I was given the option between AC-TH and TCHP. My MO said she would feel comfortable with either, but leans toward AC-TH. I've read and re-read the study on AC-TH vs. TCH (the one with Perjeta isn't published yet) and I'm definitely leaning toward TCHP. I have an appointment on 03/20/17 with Dana Farber Cancer Institute in Boston to get a second opinion. I'm hoping their recommendation will help me make a decision. Right now, we're preparing for TCHP every 3 weeks for 6 sessions.

    I have my Arctic Cold Caps ready to go and my ex-husband and I are going to do a couple of dry runs this weekend to make sure we know what we're doing. I'm praying it will be worth the trouble, but I'm ordering a wig just in case. I still have to order something for my hands and feet, but I'll do that in the next day or two once I've had a chance to research it a little more.

    I also had cording but a couple of sessions with the physical therapist and my range of motion has improved tremendously. I'm hoping it will go away completely with a couple more sessions and the exercises they have me do at home.

    Thank you for all of the suggestions to help make this easier, but I better hurry up and get my list together quick! Good luck to all of you!

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    dear mommy Erin--wish you all strength and positivity as you start! In one of the pinned posts in the chemotherapy forum there is a great list of things to obtain before before chemo--a few things, a thermometer, Biotene mouth wash, soft toothbrushes, for oral care. I also went to the dentist for a quick cleaning before starting chemo to make sure my teeth were ok and wouldn't be a source of infection

    In terms of diet -- I am a vegeterian since I was 16, no meat, non smoker, thin, active, rarely drink alcohol and I still got this disease. I blame my extremely dense breasts. What I cut out was white foods --processes sugar, bread pasta. All green veggies, other veggies berries, brown rice is what I eat now . Herceptin and pertuzumab are amazing in her 2 disease so I am sure good things are ahead for you!


    Soxfan75 --a second opinion at Dana farber sounds like a good move --wish you the best with your appts and as you get started!

    Onwards and forwards on this journey!

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    mommy Erin --I spend lots of time on the her 2 positive survivor stories forum, I still sometimes think all this is happening to someone else and keep looking at my reports to remind me that it's indeed my name on those reports , my name on the chemo bags , it's my name on those pill bottles . I have kept myself busy with to do lists and flurry of activities, ---reading survivor stores on this forum gives me a lot of strength and hope, you might like it too since you just got diagnosed and are still in the phase of accepting and doing . Jeninmichigan is a lady who was stage IV at diagnosis , got herpcetin and is NED ---helps to read these inspiring stories .

    My friends and family are very supportive, I thank the lord for these blessings, --at the same time , this community of ladies going through the same physical experience, offers a great support. I really wish everyone on this forum the very best with this emotional and physical journey .

  • MommyErin
    MommyErin Member Posts: 187
    edited March 2017

    Tara17- thank you for the encouraging words. It's been a rough day processing this. I'll definitely head over to the her 2 survivor forum.

    Wishing you all the best with your treatments

  • bruinvol10
    bruinvol10 Member Posts: 8
    edited March 2017

    Carolina_girl63, I've been thinking about you today. I hope it went well. I know we are all very anxious about our first day. Prayers for you all...

  • Tara17
    Tara17 Member Posts: 386
    edited March 2017

    Carolina girl, hope all went well with you starting treatment on March 16th

    Bruinvol --did your oncologist clear you to have all the supplements discussed ?

    I finished my second weekly taxol --developed a rash, and blurry vision . Didn't know that vision changes could be seen with taxol. Hoping that it will clear up with time

  • badger
    badger Member Posts: 34,614
    edited March 2017

    hi all, popping in from seven years out with love and encouragement. Had six rounds of TC chemo (taxotere and Cytoxan) three weeks apart, starting in March 2010. First tx is the scariest because you don't know what to expect. I didn't have a port so had IV infusions.

    I had long hair that I donated to Locks of Love before starting chemo. It was free and the stylist gave me a real cute bob. Hair started coming out 14 days after first infusion. I remember walking in a stiff spring breeze and my hair floating away like dandelion fluff. Got a buzz cut a few days later, not shaved, to avoid nubs.

    Never went completely bald, but kept a fine layer of baby hair. Two splurges: Nioxin shampoo and a satin pillow case. The shampoo was recommended by a friend with a balding DH and the pillowcase felt so good on a sore scalp. I went commando, meaning no wig or scarf. Got a lot of compassionate looks and was only mistaken for a man once LOL. Did wear a baseball cap when I took walks, to avoid sunburn.

    Last infusion was in June and by Labor Day weekend (early September), had enough hair to look like something I did on purpose. I have kept it short to this day. So much more easy-care and flattering.

    It's been a while but if memory serves, tx cycles went like this: infusion day was a Tues, got IV pre-meds for nausea (dexamethasone) and allergic reaction (steroid). Wore sweatpants as knew I'd get a lot of liquid on-board and would probably need to pee. I was able to take the IV pole into the bathroom.

    Post-infusion was buzzed on steroid for a day or two with face & neck red as a beet. Good time to get some housework done. I also played a lot of games here, thus my high post count. Came down after that and felt tired and somewhat queasy but never threw up. Took anti-nausea pills (zofran) as rx, every 4 hours for 4 days (Tues-Fri) then stopped. Sat & Sun were days of rest then back to work on Mon. By mid-week #2, I'd 'turned the corner' to feeling better. Got to feeling good again by week #3, in time for another tx.

    I avoided crowds in general and sick people in particular. I didn't let anyone tell me stories that didn't have a happy ending.

    Eat what you want, small meals to keep something in your tummy. I ate a lot of mashed potatoes and the BRAT diet - bananas, rice, applesauce, toast - was good for upset stomach. I kept saltines on-hand at all times (hunger was not my friend) and drank a lot of weak tea with milk and honey, also ginger ale. Don't be surprised if your taste buds change. I am a coffee drinker but couldn't abide it for a week after a tx. Tried some packaged drink mixes for variety in hydration. They were OK but what I liked one day I didn't like the next. Was fortunate that ice-cold water tasted good to me.

    Took tamoxifen for five years with few SE's and now on anastrozole. I still see my onc every six months.

    Last, this saying is from the March 2010 chemo group. It's inactive now but we got each other through a lot.

    Murphy's Law of Chemo SE Management: "If you don't have something on hand, you will need it exactly when you cannot go out and get it." Corollary: "If you buy it in advance, you will end up not needing it at all."

  • kimburke
    kimburke Member Posts: 34
    edited March 2017

    Hello Ladies,

    I started Taxotere/Cytoxan on March 3rd and I have been lucky. I am scheduled to do 4 sessions , every three weeks. One down , three to go. Chemo has been kind to me. I prefer to be proactive , rather than reactive in dealing with the treatment and possible side effects. I have a very strong and positive support group of friends and family .

    My first treatment was more anxiety of the unknown , more than anything else. Was given steroids to start the day before, and then pre meds via IV followed by Cyclophosphamide and then the Docetaxel. Premeds and Cyclophosphamide (Cytoxan) was about 20 minutes and then the Docetaxel was about an hour and a half. The Docetaxel took longer than expected as my bp had dropped low and they were monitoring that during the treatment , and slowed the drip down.


    Side effects I have experienced,
    A little tenderness in the mouth, no full blown sores. I used the non alcoholic mouthwash from day one , and in the middle of the day used baking soda and salt in water to rinse every few hours.
    There was some constipation after treatment, putting oats in my smoothie and muesli in my diet has helped to regularize it easily. I had trimmed my nails low , and put on top coat every few days. They haven't cracked or changed colour as yet. Hope they won't.
    Very minimal bone pain due to the Neulasta shots for three days after surgery. Used Tylenol and Claritine from the day before and for three days after.
    A little loss in appetite , but I try and plan and prepare my meals daily to try and eat regularly. Also, I make smoothies with oats, pure protein drinks, frozen fruit and blanched and frozen kale. I use the smoothies in between meals as well.

    And the big one, we all think about. Hair loss. I cut my hair in a pixie cut, the day before chemo started. The scalp felt tender from the first night. It started coming out slowly, on Monday, this week ( day 10) when I ran my hands through the hair. Last night , at day 14, when i ran my hands through, in the shower, there was noticeably much more shedding So I took the shears to it. I cut it down to the lowest setting 1/8 of an inch, and promptly put on my chemo turban cap. I will start using the wigs that I have purchased in anticipation of this change, shortly. It really hasn't been as bad as I thought it would be. Will let you know how I feel about it, when I am bald.

    My 2nd session is Friday , March 23rd. I hope to be able to share as uneventful an experience with you again after that.

    Drink lots of water (100ml or more daily) , keep my nutrition up, extra proteins, exercise and rest well. When my body says its tired, listen, rest.


    Tara17 ,How was the second treatment ?

    Bruinvol10 Good luck ! You will be fine. Let us know how your first treatment goes on Monday.

    carolina_gi…, Carolina -Hope your treatment went well.

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