Calling all TNs

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  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    I am only into my first week of AC and I am so tired and achy.  I am pretty sure I do not have a piece of my body that doesn't ache.  I am so blessed to have my family and friends.

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    pcr is pathological complete response.  No evidence of tumor.

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited January 2014

    Not sure if you ladies are new to this thread, and I don't post often, but I noticed that some of you were saying today how the AC was making you achy!  Well, for me, I was never sure if it was the AC or the Neulasta shot I received afterwards, but I read here that Claritin helps with that ache!  As for me, I have taken claritin for several years now and maybe that's why my pain level never got above a dull ache!  

    Just a thought that you may ask you MO about!  If it will not conflict with any other meds, it's worth a try!  I took the AC first, basically had very little down time each treatment (took treatment on Thursday and my only downtime was extra sleep on the Saturday following!!  I had no trouble at all with the taxol, I took 12 weekly infusions!   I never even missed any work during all of my treatments except for the appointments(doctors, chemo).  I also had no issues during my 33 radiation treatments, no skin issues at all, but jow that I'm 2 months out, I'm having some pain in the rib to back area of the radiated side.  Nothing severe, but very nerve racking as I'm not convinced that it's not mets, although my MO and surgeon said I have no cause for concern at this time!

    Anyway, I wish you ladies the best!

  • BanR
    BanR Member Posts: 289
    edited January 2014

    Going to begin Taxol on 9th.

    My onco says taxol is like a breeze when you compare it with AC. Really???

    AC was terrible for me.. Lots of nausea ... The first Ac even took me to the hospital becos i got dehydrated..was throwing up all the time, including water and anti nausea medicines too. From the second Ac, i used to take anti nausea medications as injections.

    Little scared for taxol..have had enough trauma with AC, cant handle anymore.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2014

    Welcome to all of our newbies. The ladies on here have given such good advice that it's hard for me to add very much else.

    Fighter - hope everything is ok with you.  Keeping you in my prayers.

    Gramof2 boys - I would also recommend the BRAC gene test if only for peace of mind and to try and protect your daughter in the future.  I had mine done and it came back inconclusive so goodness knows what that really means. My BS has advised that I have it done again and I think I will although my two girls are already having mammo's because of my BC.

    Candycandy - everything you have been told on here so far is what you will need. I can only add take your nausea meds whether you need them or not. Drink plenty of water and other fluids. I was encouraged to drink 2 litres per day of water and  I was never a water drinker, just adore  my coffee's, but I made it and now can't do without it although not 2 litres.  I probably drink half of that now.  Eat what you can when you can. Nibble on crackers if you feel a bit queasy but I found the  dexamethasone gave me a ferocious appetite. Not sure if you will get the Dexa as I am in NZ but I think you may get something like it.   Make sure you have something for constipation and then again something for the diarrhoea.  I had the constipation and it was a real bummer (pardon the pun).   Rest as much as you can but do get some daily exercise.  Thinking of you going through this and sending big hugs.

    BanR - no I am out of chemo and radiation now but I will never forget how I felt during it and I understand the fear and anxiety that all you newbies are going through. The ladies on here at the time were the ones who got me through my treatment and I couldn't have done it without them.  To me they were angels from Heaven.

    Tifj - way to go girl.  Nearly four years out woohoo.

    Zenful - neat hair cut.  My hair was red and wavy  but is now dark with silver tips (emphasizing my age) and its as straight as.  I do miss my waves but it doesn't look like they are going to come back.

    Bak - where are those pics of your beautiful Romi. 

    Kathy and Titan just where do you think you are hiding lately.  Bout time you came back on here.  

    Well it was back to work for me today after nearly two weeks off and boy do I feel it.  Even the weather cheered up now its back to work.   Thinking of all you newbies and also our regulars. Big hugs to you all.  Annie     

  • candycandy
    candycandy Member Posts: 18
    edited January 2014

    Zenful,  OMG! You look hard-rock!!  I did my hair cut to short from my very long hair before my first surgery. Now, I am waiting another week or so to make it more shorter. 

    slv58, LOL! sorry I have to laugh! But that's really make sense!!! 

    Do you recommend to shave before or after Chemo start (my chemo start this Thursday). I wanna play with my hair too!! It's kinda unique opportunity 

  • DorMac
    DorMac Member Posts: 155
    edited January 2014

    Candycandy,

    You'll have 1 1/2 - 2 weeks from your first chemo before you lose your hair, so I would say play with it for the next week or so. There's no rush to cut it off until it starts to fall out. Have fun with it!

    Good Luck!

    Doreen

  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    Tekwriter, my MO told me to take Claritin (the 24 hour kind) twice a day for a week beginning with the day of my AC infusion to combate bone pain from the neulasta shot.  It has helped a lot.  I feel a little achy in my legs and hips, but nothing terrible.

    I am finding AC much more fatiguing than Taxol, but it might be because I did the 12 weeks of taxol first.  I also really have to stay on top of my anti-nausea meds with AC too.  I think I'm just one of those people prone to nausea.  I get car sick etc.    I also take Miralax every day that I am taking Zofran round the clock.  It keeps the constipation from becoming a problem.

    I feel like I look like a ghost when I look in the mirror...almost no eyebrows or eyelashes.   Here's what I look like this morning without make up.

    image

    I'm soooooo ready to be done with AC...as much as I love what it has done to my tumor.  Today, I can't feel it at all.

  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    I am taking the claritin  but I have had a head ache for the entire time and awful achy weak feeling with this stuff.  I guess we are all different. The nausea has not been bad but I have kept up with the pills and only eat what I want.  I am very careful. I will be glad not to feel mine.

  • slv58
    slv58 Member Posts: 1,216
    edited January 2014

    you Ladies are all awesome! Those doing chemo - you can do it! Annie is so right about taking your nausea meds on time whether you need them or not. I didn't once because I felt fine, well within 10 minutes after eating dinner a wave of nausea hit me and I wished I had taken my meds. From then on I would take the anti nausea meds starting after infusion and for about 5 days and then gradually wean off till next tx. If I even had a hint of nausea, I took a pill. 

    Simple life-you look gorgeous! Your beautiful smile radiates and I can see an inner happiness shining through your eyes-you got this beat!

    Trek writer, can you call your MO and see if you can get something for your headache?  

    Candy, I cut my hair 4 days after my first tx because I wanted to be in control. I was going to loose my hair because I wanted to-cancer wasnt going to take it from me! My friend came over with a bottle of champagne in one hand and clippers in the other! I had previously cleared having 2 glasses of bubbly with my MO who said "go for it!"

    Wishing all a very good day with minimal SE

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    Simple, you are beautiful.  I know what you mean about feeling Ike a ghost.  I thought I looked like the actor in Powder.  Then, another time, I looked in the mirror at my bald head, round face and lack of anything feminine looking, and thought I looked just like Bruce Willis.  I began to wonder if I would ever really look like myself again, but I assure you, your real face will reappear soon.  We sure go through a lot, but wow, we are so much stronger for it!

  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited January 2014

    hello to all,

    Just found this trial on web.

    http://www.mskcc.org/cancer-care/adult/breast/clin...

    It looks promising. Let's pray for continued good results for the participants in this trial.

    It is very hard to find a trial for us TNBC's 

    It is all done in New York at Sloan Kettering. But maybe once on trial it can be administered locally. That I am not sure about. Hope this link works. 

    Best to all, 

    Marsha

  • Titan
    Titan Member Posts: 2,956
    edited January 2014

    Hey all..I am here..been busy with Christmas and New Years!  My hubby got me an ipod for Christmas which I have been trying out while jogging...it certainly makes jogging easier and more fun..I'm not faster but the time goes faster...

    Welcome to our new tn's....yes..sorry you are here..it does stink..but this group is a lot of fun  and loving and have a lot to offer you as far as info and just listening....we are here for each other....

    sounds like your chemo tips are in line.....chemo sucks but following everyone's tips are a must...take your nausea meds, drink liquids...eat what you want..and tastes good...if you crave mashed potatoes and kentucky fried chicken...eat it...you can do the healthy thing later....what is important is getting through it..I did try to walk some...the fresh air and exercise did me good..cleared the head....took the claritin for the neulasta pain...and well..just tried to live well between treatments...didn't want the chemo to rule my life...didn't want BC to rule my life.....

  • TifJ
    TifJ Member Posts: 1,568
    edited January 2014

    Fighter- Just thinking about you and hoping all is well.

  • Angstapp
    Angstapp Member Posts: 121
    edited January 2014

    Hi all,

    Haven't posted in ages, and so saddened to hear of Karen's passing, the last time I was on we had recently lost 2 other lovely ladies, may they all be at peace.

    I'm about 11 weeks post chemo and have been experiencing allot of joint pain - my fingers are always aching and whenever I get up in the morning instead of being 37 I'm more like 107, I had a bit initially after the Taxol and then I came right and now it's back worse than it was previously.

    Thanks and much love to all xox

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2014

    I'm really enjoying this time since my treatment finished.  I look at things so differently now.  I look at my gorgeous grandchildren's faces to see what they might look like when they grow up (hope I'm around to see if I was right). I look at my wonderful daughters and I see the tiredness that comes from running their home, doing their jobs  and caring so remarkably for their families without complaint.  I admire and adore them so much as women and I couldn't ask for better daughters.  I look at my old feller and feel so grateful he is still with me and I still love him with all my heart. I look at my job differently and I'm not so tired of it now and I look at all my work mates whom I love to bits and wish they never have to go through these troubles.  I am more chilled out and really don't sweat the small things anymore. I have never been afraid to speak my mind but now I think more before I do it. I look at the stars and the sunsets and I don't even really mind the rain and I look at my gardening which sort of went by the board when I was diagnosed and didn't feel like doing. Now I have a great deal more respect for it.  And every time I find a weed I think of cancer and pull the bastards out with a vengeance.      

  • BanR
    BanR Member Posts: 289
    edited January 2014

    so very well said cocker_spaniel!!

  • BanR
    BanR Member Posts: 289
    edited January 2014

    hi all

    one issue bothering me.

    I began ACs with my Wbc at 7000 and Haemoglobin 12.2

    after every cycle of Ac i was given neulasta shots, yet after every cycle my wbc and hb kept dropping . My fourth ac was postponed by a week and dosage reduced by 10 percent, since my wbc went down to 1400 inspite of getting the neulasta shots and now after my fourth and last AC, the number stands here, wbc= 3900 and Hb=9.2

    I have 4 dose dense taxols lined up. If this is the pattern after 4 DD Acs then i am worried thinking where will my counts drop down to once taxols begin? Onco says taxol doesnt hit Wbcs and Rbcs too much. 

    Would be happy if any of you could share your experiances.

    Thanks!

  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2014

    Don't get alarmed BanR - same exact thing I went through with the A/C - even ended up one round of it in the hospital with Febrile Neutropenia and a blood transfusion.  Had my next A/C put off to three weeks too.  I never again had that trouble with the Taxotere ( I had 1 Taxol, but instant neuropathy so was switched by onc) to the extent I needed to postpone a round.  You will be fine - I promise!  Best wishes to you.

  • Zenful
    Zenful Member Posts: 599
    edited January 2014

    BanR, I was scheduled for 12 weekly taxol treatments following my AC, but my white count dropped after the first one, so they switched me to every two weeks so they could give me a Neulasta shot after each treatment (can't give Neulasta weekly).  My MO Sid it was very unusual for white counts to drop on Taxol, but he had seen it happen a few times.  You will probably do just fine.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    Ban, I had 12 weekly taxol infusions and my counts were in the normal range every week.  I'm doing AC now and my RBC was slightly below normal for AC#3.    Generally, taxol isn't so hard on the blood cell counts.  The good news is that they check before every chemo and can make adjustments.

    Today, I decided to try putting on false eyelashes and using eyebrow makeup for the first time.  If I don't, with AC, I look like a ghost!  I need more practice, but I feel like I look a lot more normal with the eye makeup  and wig on.  I think it helps that I normally wear glasses.  It can hide a multitude of eye make sins!  LOL  Here's a pic without the glasses, but with the wig.  

    image

    Now I wonder how long I can stand to wear all this stuff!  Today is an "at home" practice day to see how long I can stand it.

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited January 2014

     wow  that looks awesome,  no way I'd have known it was s wig. I  didn't do do well with the wig, a  cap became my best friend.  Wasn't a  scarf person either. 

     I  have about 1-2  inches of growth now,  finished chemo in August.


  • jenjenl
    jenjenl Member Posts: 948
    edited January 2014

    My hair must be the slowest growing hair ever.  I have two inches and I finished chemo april 2. Sucks

  • adagio
    adagio Member Posts: 982
    edited January 2014

    BanR - my hemoglobin didn't drop any more while on taxol - it slowly started to rise which was good because I was starting to feel quite tired.  Can you share with us your neutrophil count - I think that is the most important one! What does your MO say? I don't have access to my reports right now (on vacation in Hawaii) but if I recall correctly my total white cell count was generally low, but the neutrophils were ok and I believe that was what the onc looked at. My oncologist kept me on Neulasta all through my taxol treatments. Things will pickup for you - hang in there - the worst is over in terms of blood counts dropping. 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2014

    Simplelife4 great wig, great picture. You look gorgeous

  • tekwriter
    tekwriter Member Posts: 216
    edited January 2014

    You look very pretty simplified.  I would not have known that was a wig.  I need to practice eyelashes too.  mine are already sparse without any help from chemo.

  • slv58
    slv58 Member Posts: 1,216
    edited January 2014

    Simplelife4, you look great!

    Jenjen, I finished chemo may 8 and my hair is 21/4" at the longest, so I don't think yours is that slow! Or mine is growing slow also ;-)

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2014

    Hi Everyone!  I wanted to wish everyone a Happy New Year and best wishes for a very healthy year.  I pray that 2014 is kind to all of us!  I just celebrated my 2-year healthy victory on January 4th, had my Onc appointment and everything is normal.  Stay strong, eat healthy, exercise, treat yourself, laugh and love!  :o)

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2014

    Debra - there you are!!!

  • TifJ
    TifJ Member Posts: 1,568
    edited January 2014

    So good to hear from you Debra! Glad all is well and Happy New Year to you as well!

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