January 2012 chemo

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  • Deb267
    Deb267 Member Posts: 46
    edited January 2012

    Day 5 forgot to take claritin today took half day to figure out why I hurt everywhere. guess it does work won't make that mistake again. anyone know how many days should take it? My taste is half gone can taste sweet but that is about it, mouth burning, cold sweet stuff for me today. I really feel bad today promised myself I would not whine ......but let the whining begin! When they said fatigue I did not know that meant can't make myself move , good thing is, if I just stay still for an hour or so it gets better. Feels real now, last of my denial out the window. Ok! whine over.

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  • momof3boys
    momof3boys Member Posts: 896
    edited January 2012

    I am day 10....still feeling achey. Mostly in my arms, shoulders, a little leg pain. My worst day was day 5, but, I'm surprised to feel achey at this point? I'm a little tired, but I wouldn't say fatigued.

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  • rachelvk
    rachelvk Member Posts: 1,411
    edited January 2012

    Regarding BC/BS - I'm in NJ and was told I had up to $500 in coverage for a wig. I haven't bought one yet, just borrowed one from a local bc resource center, but I'm heading to a store next week to look for another option. Frankly, I'm starting to prefer the turbans/buffs. The wig is sort of itchy and I keep feeling like I have to straighten in out so it looks 'normal.' But I have to admit, I like the look.

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  • KrystalRose
    KrystalRose Member Posts: 22
    edited January 2012

    What is the Chemo treatment TCx4 ?

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  • momof3boys
    momof3boys Member Posts: 896
    edited January 2012

    Hi Krystal- it means that I'm having 4 "rounds" of chemo, three weeks apart of the chemo combination of taxotere and cytoxan

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  • AnnStAug
    AnnStAug Member Posts: 8
    edited January 2012

    Hi ladies, my first round of T/C will be on tuesday. So relieved to have found this group. Found lump on 11/11/11 and surgery 12/13/11. No lymph node involvement. I am nervous but anxious to get started.

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited January 2012

    Deb I'm going into day five.  So far so good.  I do want to reorganize my linen closet today as my one project.  And is is a lovely sunny cool day so I hope to take a short walk.

     Rachelvk it sounds like you and I are doing about the same.  I was a little achey in the jaw and upper spine yesterday but tylenol took care of it.  Friends brought in dinner and I was thinking they were not such good cooks until hubby told me it was fantastic so it seems my 'buds' are also going.  I was tired before bed but slept restlessly for no apparant reason.  We will see how today goes.

    Hugs to all,

    Peggy 

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    So today is Monday here in Australia. I was at work at 3.45pm this afternoon (I finish work at 4.00pm) and the hospital rang and asked if I would change my port placement appt to tomorrow. I had to explain to them that I work and was not able to change my leave day with 15minutes notice to my workplace! The woman at the end of the phone seemed put out...



    She did confirm that keeping my 9am appt for Wednesday is still fine.



    Thought about it after and it would have been a pain to have it a day early because they are supposed to leave it accessed for my treatment on Thursday so I would have had all the workings taped to my chest for 2 whole days and nights!



    Jenn

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  • hotlyn
    hotlyn Member Posts: 22
    edited January 2012

    Hi all, Posted a very long letter last week couple of days after first infusion and since it was a miserable how the hell am I going to do this letter its best it went flying out heaven ward somewhere!

    I am now day 10 after first infusion and yesterday I started to come good Thank goodness!!

     Infusion day and overnite  stay in hosp were fine Fine but tired and nauseated next few days but then I got a sore throat that quickly  became ulcerated. So only ice poles and water for 4 days... which was sorta good.. lost 5 kilos.. but also felt sick and light headed and bloody awful actually.

    Went to GP who gave me 2000mg amoxil antibiotic and rang onc and she told me to take panandeine for pain and GARGLE with asprin , and so those two things have finally kicked in.

    Have had small meals last nite and today .. my new best friend at moment is Mcdonalds soft serve ice creams. Yesterday hubby drove me there 3 times just so I could have one.. yah for the good men on this planet, took me three (marriages) before I found one!

    And I am sure Jenn Deb I replied to both of toy , can't remember what though. I think Deb yours was about FM which we both have. I think I I told you what my Rhuemy told me.. that the steroids we take for BC helps to dampen down the FM pain.. so far virtually no joint or  muscle pain I normally have. Am off the Plaquenil tabs and Mobic tabs as well. So I must admit I am enjoying not having my usual 24/24 hour pain issues at present. Still have fatigue X 2 now but oh well can't have everything I guess

     Will send this  and hope it gets on to list  ok

     Bye for now

    Lynne

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited January 2012

    Lynne sorry you are having so many problems.  What regimen of drugs are you on?

    Peggy 

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  • DianeNMil
    DianeNMil Member Posts: 130
    edited January 2012

    AnnStAug -

    Welcome and good luck tomorrow.  I am suppossed to start this week too, not sure what day yet and I feel the same way as you.....anxious to get it going.  I was initiatially diagnose back in Oct and after many momos, 2 mri, 2 biopsies, 2 surgeries and endless waiting....its like just get it over!!!

    Lynne -

    The ulcers sound awful....I'm sorry.....hope you have a better day today!  Hugs to you.

    Oh and by the way, I am with my second husband and he is an unsupportive, self center creep most of the time so I am sooooo happy to hear third times a charm.  (:

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    Janetanned - yup, that's where I work. And if you have that for your health insurance, it's not covered. It's considered "cosmetic." I was told, however, that if you have a Medical Spending Account, you can submit a claim to BC/BS, they will deny it, then you submit the denied claim and your receipt to your MSA and they should reimburse you. I'm not going to use my MSA $ for that -- I'll need it for copays.

    We get a ton of Drexel interns.....one of my co-workers was an intern many years ago -- that's how he got his foot in the door.

    Got my pre-chemo cut last night. My hair was long enough that my hairstylist (the goddess of scissors) saved 2 ponytails which I will be able to donate to either Locks of Love or Pantene. That made me feel at least a little better about getting it chopped off.

    Normally, Media isn't that far -- I have a BFF that lives in Wallingford, so I'm over there quite often. I just don't know if I'm going to get there before my 1st treatment (Thurs) and don't know how I'm going to feel after that.

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  • momof3boys
    momof3boys Member Posts: 896
    edited January 2012

    Kite- or anyone else that wants to offer--- let me know how your RO appt goes tomorrow. I'm meeting with a RO for. 2nd opinion. The first guy I was referred to made me a nervous wreck! And I'm a pretty laid back type of person with a very stressful job, I don't rattle easy. He was up and out of his seat like 5 times, jumping around the room, left 3 times being interrupted by his nurses, etc. Reminded me of trying to get my 9 yr old to sit down and finish his homework...

    Anyway, I had BMX immediate TE reconstruction, no nodal involvement, no vascular invasion, and an Oncotype score of 16. I am doing the 4x TC (I feel like crap, but better than last week).

    When I asked my BS about radiation, he looked at me with a confused look and said "no, there's nothing to radiate, we got great clean margins...." My MO said "I don't think so, but you have the right to a consultation by a RO... That's there this began with first RO.

    His thinking, because of the size of the tumor 5 cm and my aggressive approach (chose BMX and chemo, even with a low Oncotype score, he would like to see me "clear the bases" and finish up with radiation (of course Tamoxifin after tx)

    I don't want to miss anything, and realize that surgeons want to do surgery, MO want to do chemo and RO want to radiate.

    I have an appt tomorrow with an older RO. He's actually the founder, head of the group. So I'm hoping he can explain it better, and sit still....

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  • NCbeachgal
    NCbeachgal Member Posts: 181
    edited January 2012

    My first chemo is tomorrow. I've had the nurse education meeting, yet I have a very difficult time imagining what's in store as far as the infusion process. I think Im well-versed on the anticipated side effects. God I dread this! The port-a-cath still hurts from the placement last Wednesday.

    On a happier note, I had lunch with a great friend and she gave me the nicest chemo bag/care package. It has everything I need. I can tell she did some research and that touched my heart. I also found a beautiful scarf at World Market.

    I haven't had my pre-chemo cut yet and a part of me feels bad about heading to the infusion room with long hair. I'll have it cut this week though. Dread that too.

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  • ely136839
    ely136839 Member Posts: 30
    edited January 2012

    NCbeachgal-I also start tomorrow. That was so nice of your friend to give you the chemo bag. That's one less thing for you to have to think about. I have mine all ready to go. My sister is into her 5th chemo treatment and has given me an idea of what to expect, however I am still very anxious to start. I guess it is the fear of the unknown. What treatment are you getting? I will be doing 4 A/C and then 4Taxol. Good luck tomorrow!

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  • Janetanned
    Janetanned Member Posts: 532
    edited January 2012

    NCbeachgal -  I found the actual infusion to be very manageable.  I had my port placed on Wed and my first infusion Fri.  I was really worried about using the port so soon.  It was sore and bruised.  However, I was pleasantly surprised.  The nurse was very gentle and the port was accessed very easily with virtually no pain.  I did not feel any discomfort during the infusion.  The only thing I felt was a tingling sensation in my nose during the cytoxan.  The nurse said she could slow down the drip if it was annoying.  I didn't think it was bad enough to slow things down.  I did begin to feel a little sick Friday night, easily managed by the drugs I was given for backup.  I will be sending soothing thoughts in your direction tomorrow!

    CharB22 - I also live in Wallingford!  What a small world!  The wig store in on Baltimore Pike, in Media near the Townhouse Restaurant. Actually, its closer to the Wells Fargo Bank.  There is a municipal parking lot right across the street.  Her prices are reasonable I think.

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  • AnnStAug
    AnnStAug Member Posts: 8
    edited January 2012

    Diane, thanks for the response. I went for my chemo school today which went well. My "insurance school" not so well. I was unprepared for the $$$ I need to come up with. Anyway, I will let u know how it goes tomorrow. Sorry bout the husband stuff you are going through. I have been married for 25 years (2nd marriage) and my husband is so supportive and is the general of my army. Do u have kids? They can be a big help. Hear from u soon, ann

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  • AnnStAug
    AnnStAug Member Posts: 8
    edited January 2012

    Ncbeachgal.

    I start tomorrow at 9am what time for u? I told my nurse today I am feeling anxious so she is going to give me a little Valium when I get there. If we plan to think of all the great gals who are starting tomorrow it may help to feel less afraid. I'd like to make a list. Please send me your first names if you are having chemo for the first time tomorrow. I am going to think of us in a circle holding hands and the circle is within a larger circle of the other girls who are having ongoing treatments and the other survivors circling and protecting us. Then all the families and friends and medical staff circling everyone. Please don't think I've lost it!!!

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  • NCbeachgal
    NCbeachgal Member Posts: 181
    edited January 2012

    Ely-good thoughts back your way for tomorrow. I'm having ACx4 every two weeks then 4 Taxol x4 every two weeks. Herceptin will begin at some point, every 3 weeks for a year. Radiation to begin after initial chemo. Was there one indispensable item that your sister recommended? Good luck tomorrow!



    Janetanned-thanks for the reply. It sounds like your infusion went smoothly. Thank you for the soothing thoughts and right back at ya.



    AnnStAug-hey and good luck to you. Please try not to stress about the insurance stuff. Pay what you can, when you can. Hope the salt air helps with your healing.

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  • NCbeachgal
    NCbeachgal Member Posts: 181
    edited January 2012

    AnnStAug-my name is Angie. I have my first treatment tomorrow at 1:30 and I will definitely have Xanax on board. I'm with you Ann and thanks for being with me. Good thoughts for you.

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    NCbeachgal - I'm doing the same treatment but without the Herceptin because of Triple Negative. I start on Thursday. And Xanax has been my best friend since my dx on 12/1. What was in your "chemo bag"? What should I bring with me??

    Janetanned - I know exactly where Townhouse Restaurant is....my BFF got married at the Presbyterian Church on Baltimore Pike. I've been to several restaurants on State Street and have gone to Media Day several times. I love that area. I wanted to move there when I got married, but my DH said, "we'll get more house for our money in Jersey". Yeah...and more traffic and more taxes...but at least our gas prices are cheaper and we don't have to pump it ourselves. LOL. I'm glad to hear your first infusion wasn't too bad. I'm nervous - especially since I'm getting my port put in on Wed, but my BS is doing the port and he was excellent, so I know I'll be in good hands. I'm just a big baby.

    I also found out that I have to go to the infusion center to get my Neulasta shot. Is that normal? I've seen several other posters say they give it to themselves. Not sure why I have to make the trek (not that it's too far - less than 10 miles...but still...gonna suck in snowy weather).

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited January 2012

    CharB22 - You're not a big baby - all of this is overwhelming and painful and exhausting!  I'm like you - having my port placed on Thursday this week by my BS (ran into him at a latke party this weekend - awkward to see him "in public", but gave him a hug anyway).  I, too, have to return to the infusion center the day after chemo for the Neulasta shot - they haven't given me the option of doing it myself.

    I'm buying my own "chemo bag" - a beautiful bag with the "om" symbol on the side that I hope to fill with my knitting, books, lunch, Claritin, my favorite water glass, maybe some herbal tea.  What else should we include in our bags?

    AnnStAug - what a beautiful visualization!  I don't start chemo until next week, but I'm putting you all in my pocket for port placement later this week.  You were all with me today during the bone scan and echo.  You're with me always! 

    When I was first diagnosed my first thought was, "I can't afford to do this."  Money is scary, and a reality - but most hospitals have "charity care" that can write off a good portion for those uninsured, and for those with insurance but high deductibles and copays (like me) they are willing to make payment plans.  I've found they want the $$ to be the least of my worries, at least right now.  Check into your options - and take a Xanax or Valium if need be, to get through the conversation.  

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  • ely136839
    ely136839 Member Posts: 30
    edited January 2012

    AnnStAug-I am starting tomorrow at 9:30 and will think of everyone else starting. It really is nice to know that there are others going through the same as me. I love the idea of the circle- what a great way to get though this!

    My sister really did not have anything to recommend that was not already covered here. This board has been such a valuable tool for information and reassurance that we will get through this with the help of our new circle of friends!

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  • rachelvk
    rachelvk Member Posts: 1,411
    edited January 2012

    Good luck to all the women starting tomorrow and later this week. I found the infusion to be pretty easy. Just a tip - if you're getting Adriamycin, consider chewing on ice chips during that part to minimize the possibility of mouth sores; if you're doing Taxotere, you might consider icing your fingers and toes to prevent neuropathy. It's a pain (especially if you want to read or knit), but I figured it's worth it to keep me from losing any use of my fingers at some point. And make sure you let your nurse know if you notice anything odd. The more you tell them, the more they can adjust your infusion speed, etc.

    CharB22 and Janetanned - My sister lives in Downingtown (used to live in Exton), so I'm in the area from time to time. I'd love to get together at some point. I'm about 80 minutes away.

    Nice to hear about everyone's chemo bags. I'm using a travel bag I got from Bath and Body Works a few years back but hadn't used for anything. It fits my nausea meds, Tylenol, Claritin, band-aids, hand sanitizer, nail file, hand lotion, ginger chews and a few other things as I need them (Emend, Decadron). I also picked up a few pairs of antique gloves to wear around the office as an extra protection.

    Wishing everyone minimal SEs. You can do it! 

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2012

    Hi all!  I will be starting chemo soon, but still need my onco test results, and my port placed.  I also need the chemo education class.  I see my onco this Thursday, and the CA care navigator for all that info.  I have made my decisions, and will just get the h*ll through this!!!I wish good luck to all of you who are starting tomorrow or this week.  I will let you know when I have the starting dates. Blessings to all.

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  • Pat989
    Pat989 Member Posts: 4
    edited January 2012

    Hi All!  I'll be joining you for this journey.  I haven't had a chance to read through everything yet so forgive me... I will try to get caught up tomorrow.  I had my first round TCH last Thursday and Neuplasta on friday.  I'm just starting to feel human from that shot. I have 5 more tx of that and then a full year of Hercepton.  Right now my big fear is the dreaded hair loss.... sigh.

     More later.  I just wanted to introduce myself and say I am looking forward to having such a wonderful support group.

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  • hotlyn
    hotlyn Member Posts: 22
    edited January 2012

    Hi peggy,

    My drug regime is FEC x3 infusions and then the lovely taxatore for 3 infusions.

     Feeling much better at the present. Steroids keeping me on a high. Hair hasn't started falling out yet, so all is pretty good. Have spent most of today helping 36 year old da, and her partner move house  today, they as usual have left everything to the last moment!! On one hand I feel cross about their inactivity and then on the other hand I think oh well will help as much as possible, with small stuff, mostly mind baby . go messages etc and then when I've had enough I come home and its not my problem anyway. But it has helped keep my mind of this BC stuff. so that's good

     Next week go back to work, which is is sorta 3/4 time but from home so should be very doable. Can stop and start when I want with on reason , so after reading lots on this site I realise how very very lucky I am at present. Have spent many years on my own and realise who tough it is for those on their own with little or no support. My heart and love goes out to you all

    Lyyne

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited January 2012

    Good luck everyone for tomorrow! I have my port tomorrow morning, then first FEC the next day.



    Off out for a Thai dinner with the family tonight since it's my last chance for a spicy family dinner out for months. I love spicy food and was brought up on it so will miss it so much over the next months since I gather we are supposed to avoid it...



    regards Jennt28

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited January 2012

    Peggy here with her daily report.

    Yesterday was day 5.  It went pretty well.  I had the energy to organize my linen closet. (Its is not a big job).  Went for a nice long walk and didn't need any Tylenol for the neulasta aches but am getting more tingly numb feelings here and there and some funny mouth feelings.  Had my first taste of metalic water in the afternoon.   Nothing awful.

    I think I had to large or to oily lunch because in the evening I bloated up like a beach ball.  Took a couple of tums and spent an hour belching like an old furnace.  Then, thank God it all worked its way out the other end.  (sorry for the graphic discription).  I've learned my lesson.  Light frequent meals from now on.  

    This morning I'm having my tea and feeling sluggish.  Will report tomorrow on the rest of day 6.

    Peg 

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited January 2012

    I'm wondering if my 12 weekly treatments of Tx. + Her. after my AC regimin will be worse, energy wise, than the AC?

    I've been searching the forums but there are just to many and I havn't found an answer.  Anyone know?

    Peggy 

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