Chemo May 2013

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  • Gully
    Gully Member Posts: 268
    edited August 2013

    I hope everyone with Taxol pain gets much deserved relief very soon!

    Pat, So glad you are getting a vacation! Sooooo jealous! I went out to dinner with my DH last night and we walk around town and I enjoyed some Gelato. The weather was perfect, and I really felt normal for  a while. At least until I looked in the mirror!. Hair is starting to grow, its longer on the sides and back of head than on top, just like when my bald babies started getting hair!

    Kate, Congrats on your promotion. Sorry to hear you have to wear nice clothes and your wig. If misery loves company, I am with you. I start school in 2 weeks and I am sure will not have enough hair to avoid the wig. You are right they are uncomfortable. I have a gel headband that helps somewhat to wear under the wig which holds it in place and alieviates some of the pressure of it clinging to my head. I think they have them on the tlc website. I agree though overall not comfortable. I am debating if I should starting teaching with my wig or just wear my buffs which are much more comfortable! My dress pants are too big right now ( when I am in a high anxiety state I cant eat ), so I did do some retail therapy yesterday and it was fun, I highly suggest it!

    Kate, my Aunt is nearing the end of one year of herceptin treatment and she has not had any side effects from it that she can blame solely on it. She has fatigue still, but just finished up rads about 3 weeks ago.

    5 days into Tami...still not noticing anything dramatic as far as side effects.... I had one hot flash last night Embarassed I still have not been visited by my menstral cycle yet....I wonder if it will return? More mood swings, my MO did not mention this little tidbit!. Great. Pat are you taking yours 1X or 2X per day? Morning or Night? I wonder if it affects when you have your SE.

    Everyone, have a wonderful Sunday! Hugs to all sisters, we are getting there!

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Ukkate, a staples button...lol

    (Sorry, but the image is killing me!)



    Check your wig size Ukkate, it might be too small! I have a LARGE head (the better to hold my useless brain!)...if I out on an "average" size wig it will feel like it is squeezing my head!



    https://www.google.com/search?q=wigs+measurements&client=safari&hl=en&tbm=isch&tbo=u&source=univ&sa=X&ei=460HUq6-FvGw4APbo4GQDQ&ved=0CC4QsAQ&biw=768&bih=928



    Lorrie, sounds like a few days I had on chemo....rest away, and there is nothing pathetic about it. Your body is screaming rest! I hope these SE go away quickly, glad you got out to the BBQ....



    Lisa, the cool Jammie's sound like a nice idea. I'm not a "Jammie" girl,the less the better! I wind up having to buy pajamas if we go away with people! Lol. Too restricting.



    Pat

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  • AryaS
    AryaS Member Posts: 131
    edited August 2013

    Ugh. Wigs are so uncomfortable. I have a couple but I can't stand to wear them for long. The itch and sweat gets to me.

    I bought one of these wiglet things: http://www.headcovers.com/63/hats-with-hair-curly-hair-liner/

    I got mine at a wig store for $30 and now I'm just collecting hats.

    I use it with all my hats. It's much cooler and much more comfortable than the full on wig.

    I also bought a "hat with hair" baseball cap with Velcro in hair piece and it is so much cooler and more comfy than a wig. I got a headband to Velcro the hairpiece into as well so I can wear it with many hats.

    I have my shorter curly wiglet and then the hairpiece is long and strawberry blonde (even though the website said it was auburn).

    At home I just wear soft cotton hats. I even made a couple on my sewing machine. I am hat crazy over here.

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  • debbiema
    debbiema Member Posts: 34
    edited August 2013

    Hi Ladies!  Congrats to everyone who has finished up their chemo!  I too finished mine on July 17th!  Yeah!  Survived 4 rounds of T/C, however, now I have thigh and calf discomfort.  More like sore muscles that need to be stretched!  Anyone else have pains in their legs?  Not sure if it warrants a call to the docs so I thought I would start with you fine ladies!  Thanks for any insight!

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited August 2013

    Debb, I have pains like that, but I'm still in chemo. I'm not sure... I hope it goes away soon for ya!

    Arya, I don't have any wigs.... I've been wearing hats... They kind of look like baseball caps, but are for cancer heads & cover more in the back. This was a natural choice for me since I was usually in a ponytail & baseball cap before the hair came out. They are soft and really comfy.. T-shirt material. I have a few colors to go with whatever I wear.

    Gully, I hope you post everyday about the tamoxifen... I think since we are all watching, nothing will happen, right? I hope you get no SEs!!



    Stayed home from work, again.... Seems I'm working fewer hours as the end of my chemo gets closer...

    My hubby calls me mid day to see how I'm doing when I'm having it rough & I almost lied to him about staying home today. I feel so lazy, even tho I know I'm not.

    Found out he's been putting together a vaca to Belize for us. I think it was gonna be a surprise, but he had to ask about my chemo/rads apts to know when to book it...



    My Onc wants me to start rads about 3 weeks after chemo... I feel like that's about when I'll start feeling better after last chemo. I told hubby to book it about 3 1/2 weeks after to be safe & I'll adjust my rads to start when I get back.... We (I) NEED this break!! No hospitals, no dr.s, no medical bills to find in the mail.... Lol it'll all be here when (if) I come back! I may decide to stay! Haha



    Hope everyone is feeling as well as possible & I hope you're enjoying your vacation, Pat!



    Lorrie

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  • elkatho
    elkatho Member Posts: 159
    edited August 2013

    Deb.. I have what I would call tired legs, a little weak. It feels like I have not walked for ages when I get up.



    Finally.. My appt with my MO on Wednesday to discuss if I am done with chemo due to my allergic reaction or if he will recommend another regiment. I completed 4 rounds. This month of waiting has been a pain in my beehind. Going into an appt not knowing if I am getting chemo is not good for me. I like to plan my week a little and mentally prepare. Well soon enough and I will know.



    I wear a wig to work everyday. I can feel it but it does not bother me too much. I can adjust the tightness of it. Outside of work I wear hats because I have always worn hats. Plus wigs are too hot outside during the summer.



    Good luck too everyone.

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Elkatho, I hope you hear what you want to hear when you goin for your appointment!



    Lorrie....YIPEE!

    That sounds like you have the gold ring from the carousel, when you get off the chemo ride you will have an awesome "prize"!

    (Now I have to go see where Belize is on a map! Lol-all I know it is a great destination!)



    Pat

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  • Gully
    Gully Member Posts: 268
    edited August 2013

    To all on Tamoxifen SE watch, day 6.......one hot flash today...no biggie, nothing else to reportSmile

    TE exchange countdown...17 days. Went to my plastics preop appointment today. New ta tas will each have a unique serial number, they gave me a book to read about them,,,,no lie,  and are insured for life...LOL Signed a contract with the PS that I will get a MRI to check for silicone gel leaks after 3 years and every two years after that! WOW

    Patti, how your tami treating you?

    Leg pain ladies, I had this too after rounds 3 and 4, felt like I had done a hard workout, and legs were sore. 5 weeks PFC and is mostly gone. 

    Really jealous of the Belize vaca Lorrie, you have fun for  all of us OK!!! Hugs to ya , you deserve it!

    Good night ladies, I hope I can sleepCry

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  • carla53
    carla53 Member Posts: 264
    edited August 2013

    Lisa-Congrats on being done with chemo. Yay!



    Lorrie-How exciting and what a blessing about your Belize vacation coming up. Very happy for you. :)



    Gully-Thanks for the updates on Tamoxifen. So funny that your tatas will have serial #'s and are insured for life. Good luck on sleeping tonight.



    Patty-Looking forward to hearing about for tamoxifen journey too.



    My S.E.'s from Wednesday's treatment hasn't been too bad. A couple days of fatigue. But getting better daily. The 28th is to be the last. Nice to know there is an end close in sight.



    Wishing all a comfortable week.



    Carla



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  • argynis
    argynis Member Posts: 123
    edited August 2013

    Done done done!!!! Chemo is over for me :)

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Argynnis...WOO HOO!



    Tamoxifen...this is my third day. I put my pill on my breakfast plate, along with my vitamin D (low count) and my biotin (hoping to assist hair re growth)...went to the kitchen with my plate to clear it off and get a glass of water to take my pills and I proceeded to throw the pills into the dishwasher! Lol. I think it was a subconscious decision to get rid of all of this stuff (cancer too! )

    Note to self, don't clear the plate until AFTER taking my pills!



    I can't say I have had any hot flashes, but remember I have cut my dose in half to spare my family any mood swings on our little vacation before I go full dose.

    I will say that I have been REALLY hot while sitting and playing RISK with the family, but I think the overhead lamps are acting like an interogators lamp. That and the intensity that my lovely kids and hubby play!



    Lorrie, I've been thinking of your trip to Belize (I looked it up!). It shouldn't be too bad for the majority of us to get there....be sure and tell hubby to reserve some extra rooms....you will recognize all of us by our various states of treatment... bald, no chest, half chest, lopsided chest, radiation burns, hot flashing crazed, wigs, buffs, scarves, some might even be dragging their IV poles. Oh, and we will all be carrying a gallon of sunscreen-each.



    Pat



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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Carla, glad the end is in sight!

    Pat

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  • Ukkate
    Ukkate Member Posts: 292
    edited August 2013

    Argynnis - YAY for being done!!!!

    Lorie - so exciting about your vacation!  You totally deserve it!!!

    Hi to everyone else.  I'm having that leg tiredness too.  I water walked at the gym yesterday with my friend Ellen for 1 hour and was so exhausted last night - I think I fell asleep on the couch around 9pm.  So I went to bed and didn't take my ativan and was wide awake at 4am!!

    I ordered a "head band wig" online - it was pretty cheap.  I hope it looks good - that's where my wig hurts the most, right on my forehead.  I also got a band to wear under the wig that's supposed to take the pressure off.  I hope I start my new job now after spending extra $$. I can't wear the "hair under the hat" thing to work but that does look super comfy.  I just want my hair back!!!

    I'm really starting to feel better (aside from the tiredness).  Water finally tastes good again and so does coffee!!  I started dieting yesterday too. I'm doing "MyFitnessPal" on my phone which logs your calories for the day.  I'm on track to lose 1.5 lbs a week which is a nice slow weight loss.  I started chemo a size 8 and now I am struggling to fit into size 12 pants!  I want back into my old clothes....

    Okay - gotta get dressed for work - no rest for the wicked.  Hubby is taking the day off to play golf!  He's got all this vacation time and I have none due to all the sickness days I've taken :(

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  • lpc
    lpc Member Posts: 303
    edited August 2013

    Good morning all

    Worked an overnight shift last night and am about to go to sleep. Work was so much easier with no customers in store.



    Lorrie Belize sounds wonderful.



    Argynnis yay for being done.



    I am still waiting for coffee to taste good. Drink it everyday with high hopes but so far still not tasting good.



    Hope everyone has a good day. I am hoping hot flashes don't interrupt my sleep today.



    Lisa

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  • Teresa_G
    Teresa_G Member Posts: 259
    edited August 2013

    Lorrie, you will have fun in Belize.  I had a stop there on one of my cruises.  They have some cool ruins and lots of other fun things there to do.  Next time I am there I am definitely doing the cave tubing! 

    I went to my radiologist 2nd opinion appointment today.  She convinced me that I really do need to think about doing radiation.  I am going to not think too much about it until after my tissue expander placement surgery on Thursday though.  I think I have enough on my mind as it is.  My eyes have been twitching for over a month.  I hate stress!!!!



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  • elkatho
    elkatho Member Posts: 159
    edited August 2013

    Teresa. Are they suggesting radiation because of the positive lymph node? I know a couple of ladies in my support group who had a masectomy were talking about it. I was curious why one who had a masectomy would also have to get rads. Best of luck with your decision. At times I feel like the decision making is the most exhausting part of this process.

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited August 2013

    Drove home from the hospital today & just started crying... I couldnt stop! My skin is developing a disgusting rash from being under tape for 2 months. The nurse today tried to cover as little rash as possible & has my picc going a different direction taped up under my arm, but it hurts and itches at the same time.., ugh! Plus I'm not feeling well and went to work today... I think I'm on the verge of a nervous breakdown... Feels like ive taken all i can take! I just WANT to cry & cry & cry until the rest of this nightmare is over!



    I realize I'm preaching to the choir.... All of you are going through your own stuff too... I just don't see how anyone actually completes treatments without breaking down! I suppose if I was to go backwards on this board, I'll see that this is about the time between chemos where I get weak...



    Maybe a glass of wine & early to bed for me.... Maybe I'm just sleep deprived on top of everything else even tho it seems like I sleep all the time these days...



    Okay.... My rant is over! :)



    Lorrie

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  • lpc
    lpc Member Posts: 303
    edited August 2013

    Lorrie



    I cried when I finished chemo and as I said then it wasn't exactly tears of joy. More an accumulation of all the emotions from chemo treatments, trying to be strong and positive and knowing despite chemo over I will not be same as before treatments. Plus still have rads to do. Hang in there!



    Lisa

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Lorrie,

    I have read about a lot of women being allergic to tape. See if there is a different tape they can use on you. That is ridiculous to leave a tape on you that you are allergic too!

    I hope you have your wine, whine is good too! Have a good nights sleep.

    Pat

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  • tori39
    tori39 Member Posts: 26
    edited August 2013

    Hi ladies! As the treatments come to an end (I am 5 of 12 taxols) for our May chemo group, I was reading up on the alternative boards on possible ways to avoid a recurrence. One of the common threads is on vitamin D deficiency. So I was wondering if you all are vitamin D deficient too during your diagnosis? I think if we know that most of us are, then one way we could somehow avoid recurrence would be to keep our vit D level up. I say somehow because there does not seem to be any rhyme or reason as to who gets BC. Even those who eat only organic, or run marathons, or are doing plant based diets seem to get it. It is frustrating and scary not knowing how NOT to get it again for sure :(

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  • argynis
    argynis Member Posts: 123
    edited August 2013

    I was tested and had low Vit D (score of 22 - normal is in the range of 30-80 or so) - I am now on 8x 50000iu vitamin D2 once a week followed by daily vitamin D3 as soon as my levels are back to normal.

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    My D was low after first round of chemo (or that's when they tested for it, so who knows when it started being low). I am only taking 1,000 units Vitamin D daily.

    I think I am going to go to my general doctor and ask her to have it tested again, Onc seems to think waiting another 3 months is fine to see if my levels are good. I don't think I want to wait. In theory it's already been 3 months since last bloodwork, so that would make it 6 months total to wait.



    Pat

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  • carla53
    carla53 Member Posts: 264
    edited August 2013

    Never been told I am low on viramin D. Don't think that was a factor for me getting b.c. would sure be nice to know for sure what it was. Maybe it was stress..maybe it was my diet. Maybe it was my digestive system or low exercise regime. Am attempting to change all of these possible factors just in case. Even more vitamin D...just in case.



    Carla



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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited August 2013

    I live on Oregon......we are all vit-d deprived....LOL & I just picked up a bottle....plus calcium..... I'm 45 & feeling like a 70 year old..... I can't wait to be able to.....

    k

    Put in a 40 week....

    Be able to carry the laundry upstairs....







    Keep it going.......... What's on your "list"......

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  • elkatho
    elkatho Member Posts: 159
    edited August 2013

    My MO never talked about vitamin D levels but I read about it also so J have it on my list of questions to a s k him today at my visit. I have been taking 1000 for quite a few yrs per my PCPs request.



    .......cannot wait to have energy to really exercise so I stop gaining weight.



    The minister at my cancer center came to our support group a few weeks ago and talked about all the losses we have each gone through...breast(s), hair,energy, time, the life we once knew, and how important it is to recognize it and work through it in our own way....crying some, talking to someone, meditating, etc He said we should not slight what we have gone through even if others do not understand it or realize what we are all going through. Most importantly work through it when you need to so you can enjoy the good that's still there for us. So for me, I am thankful for the boards to whine or vent or say yaa to help me get thru the low times.

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  • Gully
    Gully Member Posts: 268
    edited August 2013

    My MO said most Mainers are Vit D deficienct. Had my blood drawn a week ago but do not know my levels. I take 2000-4000 IU of D3 a day. (depends on how many drops fall out of the bottle) But I have been doing this over two years! Its helps with our winter blues!

    I think everyone wants to know why we ended up with this horrible bc. I know each of us struggle with the why and how, but the truth is, and I have read until my eyes felt like they are bleeding, and they just dont know!

    Recurrance, is a super scary word, for each of us, and something that we each will have to figure out how to live with. My DH says, After treatment, you will be back in the pool with the rest of us" I am glad that makes him feel better, but I feel more like that I am back in the pool but with a rock tied around my leg!! This feeling hits me still, and is when I get the panic attacks in my head that remind me that this is not a dream, but my life! I really dont buy this "gift of cancer" thing I have heard. Its its a gift, I want the recepit so I can return it!!!

    To possible avoid recurrance my MO gave me a crude list of things to keep in check, but there is no way to know if they will help me. Again, studies are out there that say they help. So I will adhere to the suggestions to give myself at least a little control, even if its in my head. My big obstacle is to keep my stress levels lower!

    Here is my list:  Vitamin D, aspirin 2X per week, exercise to keep a low BMI, non fat dairy, nothing white otherwise, lots of fruits and veggies, deep sea fish 2X week, limit alcohol (this is a hard one!) and some studies note the benefit of tumeric, cinnamon, and  celery. The bad thing for me is......I did all of this except the nonfat dairy, aspirin, and the tumeric, cinnamon additions before I got BC!!!!! I guess my new weapons are tamoxifen and spices! Do I feel really good about this, not really......Most of these things are what all docs suggest for a healthy diet for everyone.

    I guess we have to look at the diet like we did the chemo.....it may help avoid possible recurrance but there are no guarentees! The type of BC, genetics, and environment are things we cant control and all have differences in recurrance rates that are also a reality we cant control.

    I am trying to start to go on with a normal  life everyday, but its hard.

    I hope my chemo killed all my cancer cells. I hope my Tamoxifen works for me if there are  cancer cells left in my body. I hope my diet and exercise helps to keep my body as strong as possible to fight it if its there. I hope my doctors are doing everything they can for me, I hope I can bring myself to trust them with my life, I hope new medicines come out to treat people in our lifetime,  I hope to forget about the big C a little more each day, I hope I can do this for many many years!

    I hope everyone has moments today you forget you have to deal with this sucky disease!

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited August 2013

    Gully....great post!



    Elkatho...for a minute when reading what each person might have to do to get throug dealing with breast cancer I thought "meditating" said "medicating". Guess I shouldn't read so fast!



    Here is an expression on a picture for sale in a gift shop. I saw it last night and scribbled it on scrap...



    Life's a ride.

    You've gotta buy a ticket,

    Hang on tight

    And keep going around

    'Til they kick you off.



    Pat

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  • Gully
    Gully Member Posts: 268
    edited August 2013

    Good one Patty!

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  • elkatho
    elkatho Member Posts: 159
    edited August 2013

    Patty. Medicating....Merlot...one in same to me.



    Gully....agreed!!



    I asked my MO about vitamin D. Not really something he pays too much attention to as there has not been any official studies but when I see him again in 4 months he will order some blood work so I can know my levels.



    On to Radiation then tamoxifen.

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  • LJaeger
    LJaeger Member Posts: 58
    edited August 2013

    LPC and Jenna, sorry for the lack of response! I've been away from the computer for a few days. 

    lpc- I am getting radiation. Not sure why certain places choose to do exchange before vs. after. But my plastic surgeon was very specific about getting the exchange 3 weeks after chemo and then rads starting 3 weeks after that. Guess it is their protocol (I'm at Memorial Sloan Kettering). 

    Jenna - they found the cancer in the intermammary nodes on an ultrasound and then PET scan. Initially I had an MRI at an imaging center (at the very beginning of the process after my fine needle aspiration) and they saw an enlarged axilla node. My hospital redid the ultrasound (particularly considering the imaging center missed my cancer for a year) including the underarm area and inbetween my breasts. (there are intra-mammary nodes in the actual breast tissue, and then inter-mammary nodes inbetween the breasts, under the breast bone). I guess my nodes under the breast bone (actually, right near the heart- I saw it beating on the ultrasound) were enlarged. They did a PET scan after all this (before my MX) and it showed cancer in the nodes. Sorry, that was a long explanation, with lots of parentheses!

    Not much else to say this week - I'm away on Martha's Vineyard, thanks to my boss (I am very lucky). It was a last minute thing, and we've enjoyed just relaxing. When I return I've got to get those stupid blood counts checked again because my liver levels were up again on my chemo day, but they gave it to me anyway. I think I'm reacting psychosomatically because every once in a while I think I have pain in my torso on the right side, and then a bit in my chest. I guess I'll just mention in when I go back to the onc's office on Tuesday. Until then, just trying to enjoy the week.

    Cheers to all.

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