Starting Chemo July 2013

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    zimmy - are you doing anything to try to prevent the neuropathy? If not, perhaps you can try some supplements to try to minimize it. Right now, that is one of the SE that is terrifying me most (along with brain fog). 

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Ladies, Any of you order wig from TLC (monofilament)? How is the quality and the way it feel? I heard human hair looks and feel better but didn't last as long as synthetic one. Thanks ladies!

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited July 2013

    Soriya,

    I ordered a monofilament wig from them. It is nice.

    Human hair is actually better quality wise....but they are over $1,000 I believe!

    Both need to be maintained (meaning washed).



    You need special shampoos , conditioner and sprays for the synthetic wig.



    Did you go to a Look Good Feel Better workshop?

    Go try them if you haven't.

    Here is the link to find one in your area. Scroll down on the link and you will see on your left side to enter your zip code. You will then click on the different hospitals or treatment areas to see what dates/times they offer the program. You MUST pre-register so they know you are coming...sometimes they might cancel if no one is coming! Or it could be filled!

    http://lookgoodfeelbetter.org/



    Anyhow, they will have FREE wigs, and you get to try them on and check them out! If by chance the one you go to does not have wigs there then they will give you a coupon to take to a wig bank to get your free wig. They also give free makeup and bag and instructions on how to apply it. (Good quality makeup too, not dollar store quality!)



    mine also GAVE ME FOR FREE, the needed shampoos, wig conditioner and spray for the wig along with a wig stand! (Though I did go to another session at another hospital to go over the makeup again and at that hospital they did NOT give the ladies any wig care products!). If you don't get the wig care products I found that the tlc had a good price for the package. Also, you will want a wig comb or brush (I picked those up in a hair care shop by me)



    Make sure you measure your head (google for directions). If the wig is too little it will give you a headache and keep slipping, if it is too big it will look odd, you want "just right", like

    Goldilocks! :)



    Pat

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Thank you Patty. I checked on TLC website, and their website show u how measure your head. I am falling under "petite side". Do you kno, if their measurement is accurate?

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited July 2013

    I do believe it is...and based on your IM regarding your body type that would make sense. Mine is "large"...and I am tall enough and heavy enough to agree with that.!

    I have an "average" size wig and it is NOT comfortable. I have a "large" size wig and it fits VERY comfortably.



    Just make sure whatever you place in your shopping cart is the correct size.

    On one site I looked at I thought I was looking at "large" size wigs due to the search I had used, but some of them were average!



    And,....I don't even wear the wigs I have...one from TLC, and two from Look Good ?eel Better (long story on why two, you are only supposed to get one). It is ME, I don't like the "look" or "feel" of a wig. I am way more comfy in my buff. Www.buffusa.com



    Pat

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  • peace777
    peace777 Member Posts: 71
    edited July 2013

    Marsha and Tea  I really hate to hear that you have no support.  I know it has to feel aweful.  I think Mellie289 has a great idea, get ahold of the American Cancer Society,  also check the cancer center, hospital, drs office or your area for info for a support group. I have alot of support but I would really like to sit and talk to a group of ladies going through the same thing and support each other.

    My chemo is not until July 30th but reading everyones responses is teaching me alot.  I wish could remember the name of the chemo drug they are giving me.  Sounds like SE depends on the individual.  As a few of you said its scary the closer it gets.  The day of all my appts I was scared sick. Cant imagine first day of chemo.

    Take care praying for you all

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  • m1970
    m1970 Member Posts: 337
    edited July 2013

    Actually I do have a lot of support but that one day I was feeling sorry for myself becaus I felt so bad and it had been quiet all day. I just don't know how to ask for help. My family is far away and that doesn't help, so I have to rely on friends. People have started checking in in me and I asked a friend to visit with me because I was lonely. I just have to remember that people can't read my mind. I'm not sure why my family is so quiet. Maybe they forgot. I know it was hard for me to keep up with my dads medical stuff when he was alive.

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Chemo on this Wednesday 17, port placement on Friday 6am in the morning. Man... most of you have port placement b4 chemo, what the heck with my insurane (Blueshiled). My insurance took like a week and half for approval.



    Am I the only one that have port after chemo? :'(:-(

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    If I'm forced to get a port, it will likely be after my first chemo as well. I want to get started and I have no port surgery scheduled yet although my chemo start is also not scheduled yet at this point too!

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  • SheilaB330
    SheilaB330 Member Posts: 73
    edited July 2013

    Hi ladies,



    I have my first AC treatment Thursday. Nervous with having the port accessed because it has been sore since getting it July 1. Still, grateful that it will make chemo much easier as it goes into venous vein near heart. REALLY glad chance to heal before chemo as it is rough on immune system. Thought my breast was infected but the redness is inflammation and irritation of changed contour of having lumpectomy/partial mastectomy. I have lidocaine to put on port area an hour before. Hope it is not painful to get it set up with the 'spigot needle gizmo' - 2 general anesthesia surgeries in 2 week period and lymph nodes removed have been fatiguing. With cancer -extracapsular in 4 of the 5 nodes with cancer out of 11 removed, I am looking forward to the healing gift of chemotherapy to clear out any cancer remaining. Good luck and healing wishes. Sheila

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Hannariggs

    I took 2 x sennacol ( senna and coloxyl) the night of chemo, the night after and the morning of day 3. That was enough and but I was very gripy by the night of day 3. Haven't taken anything since but haven't seen a stool for 48hrs although I think I was emptied out. If nothing by end of today I will take 2 more sennacol I only took the antiemetics ( kytril) on day 2and 3 so hopefully if no anti nausea tabs then less chance of constipation



    Starting day 6 today Mouth feels a bit better and I have energy hopefully it's all OK now till cycle 2 but I do have blood tests day 8 and 10 to check WBC counts Hopefully no neulasta for me. Have booked for golf again for day 9 Unsure if 9 or 18 holes at this stage



    I Did 2 hrs of work day5. But wasn't really interested

    Don't fear the chemo ward folks day 1 is pretty easy seriously it is the daunting unknown ... I was terrified BUT I have been SO pleasantly surprised so far. Chemo is nothing how I had imagined it

    Good luck for this week hunnybunny, dwfmom, lanam et al

    Xx

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Marsha 1970 -

    I saw your message on my cell earlier today but couldn't log in to give you a virtual {hug} - I had one of those days last week, after dozens of calls, cards, food, flowers, then nothing (just feeling sorry for myself really).  I hate that your family is far away, but I hope that you DO have the support you need and deserve!  Glad you called for a visitor :)

    SheilaB330 -

    I LOVE the way you put it: "...I am looking forward to the healing gift of chemotherapy to clear out any cancer remaining." - that's perfect!!!  I'll carry those exact thoughts in for my first round of AC on Wednesday :)  And MY port's still bothering me too - EMLA to the rescue!

    Soriya -

    I have a friend who had her entire first round of chemo via a traditional IV - then a port for the second round (in her arm vs chest b/c of pending surgery).  My Dad did the same!  I feel pretty certain that one IV chemo will be fine :)  Hope you do something enjoyable tomorrow!!!  I'm going to be fitted for my prosthetic breast/bra (no reconstruction for me - at least not in the near future!).

    ~Lynn

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Soriya. I had cycle 1 TC by I/V.to elbow crook

    No probs at all and plan to do the remaining cycles that way too maybe a different site but all I/V with emla first

    No port for me .. I have small veins am sure you will be FINE. :))))

    :)

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited July 2013

    Thanks for all the tips noncompromise! I love your upbeat personality!  Today was a down day for me so I am happy to see someone else getting along well.  Gives us all hope.  God Bless.

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Thank you ladies for all your infomations.

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited July 2013

    Hi everybody! I just returned from vacation and am shocked to see how this thread has grown.  So happy to have so many new firecracker friends!  I had the most wonderful time at my son's wedding in LA.  He surprised me with a very sentimental mother/son dance that had me in tears.  Then my older son took me to San Diego for a week to just relax before starting chemo.  It was absolutely fabulous not being a cancer patient for a little while.  I slept like a baby every night.

    Now I'm back home and worrying about next Monday.  All of you who have already started treatment have been so helpful with your reports and that is making me feel more confident that I can do this.  I'm a teacher also (3rd grade) and am waiting to make a decision about whether to begin the school year.  It's so hard to imagine not being there the first day to bond with my students but also want to do what is best for all of us.

    Have an appointment to get my wig this week and making my shopping list.  Thank you all so much for the great suggestions.  Since I live alone I'm wondering if I should ask one of my daughters to stay here with me anytime during the first week.  Any suggestions? I look forward to getting to know all of you better as we fight the fight together.

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Hi jerigrace

    They recommend you take someone to first chemo incase you react ( unlikely). But from my experience so far days 4 and 5 are probably the most tiring .( and not even so at that - I have been SO pleasantly surprised).



    I feel like a bit of an imposter compared to my image of this chemo would turn out

    .. Maybe even save the offers of help until the second or third cycle as the fatigue possibly accumulates?? But everyone is different and just having moral support with you at home is huge i guess too

    Hope it all goes smoothly for you

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited July 2013

    good evening warriors.. today was a good day. I'm so glad.  But I was in a fog most of the day OY.  First chemo was on Friday and i hate the way my body feels right now.  It's like I have no control over anything.  My jitters were like wacked out.. I slept a lot, was just plain exhausted.  Today was a bit better and I am glad I got out.  But oy the heartburn started.. yuck.. I feel so bloated.. yuck.  *sigh* sorry to be such a downer but oh.. from going from no drugs to being toxic.. is reall wreaking havoc on my system.  I hope everyone has a great night/day! <3

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Hi Honeybunny, glad to hear you had good day today. Did you take anything for heartburn? The last time I had heart burn when I was pregnant with my first child 11 yrs ago. Mine was bad one. I can't even imagine chemo heartburn:-(. Take it easy n get a lot of rest. (((Hugs)))

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Hi Firecrackers!

    Quick question for those of you who are already underway with chemo:

    Have you had issues with taste or eating?  What about water?  Are you all staying hydrated?

    Thanks!

    Hugs to all,

    Lynn

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Hi Rambo

    Hydration really important. I reckon day minus 1 thru 3. Not so much after that once you are off the antiemetics and your system has flushed thru

    My onc said water not as well absorbed as sweet or salty drinks.

    I made sure I had a variety. Milk for breakfast , milo , lemon squash, ginger cordial, some water and soups made sure I had about 2.5L a day minimum. Am being slack again now from day4 only 1.5L

    Taste slightly weird days 2 -5 but nothing metallic this time around

    And today I ate some raw onion and spicy tomato juice. Thought it might be a dumb move but I got away with it

    Mind u. I am on TC :))

    Food?? Lots of protein. Roast chicken, roast lamb ( and too many carbs !!!).

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  • Hannariggs
    Hannariggs Member Posts: 137
    edited July 2013

    Hi Sisters,

       Has anyone had any issues with their teeth?  In two days I have had a cap fall off and now a filling.  I have heard chemo is bad on your teeth but haven't heard any comments.  Maybe just a coicidence?  

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  • zimmy
    zimmy Member Posts: 12
    edited December 2013

    Mellie, I started B 6 and L- Glutaime prior to tx trying to prevent any neuropathy.  

    If I am getting neuropathy after 1st tx, I'm worried I will not be able to continue for the full course.

    Anyone else have this ? If so did it resolve itself ?  

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Sue, thanks for the info - I didn't know about water vs other liquids!

    Hannariggs, I had my teeth cleaned and checked a couple of weeks ago and I have lots of dental work (crowns, veneers, etc.).  I'll let you know how I fare!  Surprising that it happened so soon if it's chemo related. So sorry :(

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  • Curlysue50
    Curlysue50 Member Posts: 22
    edited July 2013

    Hi All

    I have just had my last AC of the ACT yesterday. I did not want to have a port. I have small veins and no one has had a difficutl time accessing my veins for infusion and blood draw. One infusion nurse has use a heat pack that raises up the veins nicely. I had enough surgery and didn't was to have another (the port).

    Looking forward to getting through a better two weeks on my last "AC".

    Cheers to everyone..hang in there.

    Helen from Chicago

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  • supermomof6
    supermomof6 Member Posts: 2
    edited July 2013

    All right, I will admit to being more of a lurker, and I want to thank everyone for everything they put on here, because it has helped me. I just wanted to say hello, and I'm scared out of my mind because I start chemo today...I was supposed to start last week, but something was wrong with my port and when it was checked out we discovered the tube had seperated from the main port and had floated itself right into my heart. It was a stressful week and now it is time to (hopefully) get started. 

    Thanks to all again! 

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited July 2013

    Michelle,

    Best of luck on your first to around. N hopefully last weeks fiasco will be your worst "side effect" of chemo.

    Glad you have been reading here, you have probably learned a lot and will be better prepared than those that don't take the initiative.



    Pat

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Michelle - that sounds so scary! Glad it's all fixed now and good luck with your first chemo.

    Helen - congratulations on finishing AC. I hope the next phase will be easier, as some say.

    Hannariggs - I can't remember from pages back - are you icing your mouth during chemo? Could it be the cold causing contraction of the metal in your filling and cap if there's any metal? I was told by a dentist a few years ago that I developed a crack in a tooth because of a filling expanding and contracting from hot/cold foods and drinks over time. I think that's how they can fall out too. From what I see, the tooth problems with chemo are usually decay caused by long term dry mouth (hence, the Biotene and related products to simulate saliva).

    zimmy - I think this link from the Mayo Clinic is informative about neuropathy. I also see people use lipoic acid (alpha or R-) to help with neuropathy. I plant to take R-lipoic acid supplements along with methyl B12 (better uptake than the standard B12) and L-glutamine.

    http://www.mayoclinic.com/health/chemotherapy-neuropathy/MY01327

    It seems like the neuropathy could be temporary, although I don't think that is the case for everyone (probably depending on pre-existing factors).

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Ladies, Okay this silly question. When you say drink a lot of water. How much is a lot? How many cup or ouce should I drink in one hour. I don't want to drink too much and make myself sick....which I hope not. Thanks ladies!

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    One of the dangers of drinking too much water (water intoxication) is loss of electrolytes. 

    I intend to stay hydrated with water, but also with sports drinks that have electrolytes or coconut water, which is a natural source of electrolytes. I like Gatorade, but if I'm going to try fasting, I'll probably stick with calorie-free electrolyte mixes (like Electro Mix or Propel Zero), Powerade Zero or try homemade mixes with salts added (many recipes are online!).

    You don't have to drink pure water to stay hydrated. Anything with water in it is going to hydrate you, like fruit juices, milk or lemonade. I haven't started chemo yet, so maybe there will be different guidelines when it comes to flushing the chemo out of your system, but certainly for hydrating yourself going into the treatment, you should be able to drink other things. 

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