SEPTEMBER 2009 RADS

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  • ccbaby
    ccbaby Member Posts: 985
    edited February 2010

    Speaking of appointments....I counted up all of my appointments (I kept track by writing each one down at the time) and so far has added up to 164, yes I said 164 appointments since I found my lump in January last year!!

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  • peg119
    peg119 Member Posts: 281
    edited February 2010

    kawee - yes I had a cold.  I started out with a bad cold, then started throwing up and having the severe achiness.  The cold is kind of lingering.

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  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    Ok..Christy is at 164....can anyone beat that??   If anyone can the prize is meeting

    Brad Pitts bro...right Christy?Laughing

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited February 2010

    Christy -wow...that's 3 appointments a week for 52 weeks. I needed a calculator to do that math but my dh could do it in his head. I know I can't beat that figure...is there sloppy seconds? I'm game. Kiss

    Kawee - I had the cold but no fever. I'm thinking my vit. D is really helping on that front.

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  • echosalvaje
    echosalvaje Member Posts: 191
    edited February 2010

    Yeah, I've spent the past three weeks sick with a cough/fever thing. My husband got it too....I'm sure we picked it up on the plane returning from Cancun. It's finally going away.

    kawee, what's up with the Tamox thing? I'll tell ya, I was really apprehensive about taking it too. It sat on the counter for a couple of months before I got up the nerve to take it. I've been on it since November and have not had any side effects. I'm not sure which cancer blood test you're talking about. There is one that checks to see how well you metabolize Tamoxifen. My doc won't do it because he says the study is not conclusive. Betsy are you on Tamoxifen?

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  • kawee
    kawee Member Posts: 324
    edited February 2010

    I'm just afraid of that drug.  Some of the side effects are what I already have with the lupus.  Dry mouth, body pain,fatigue etc.  I was on estrogen when I was diagnosed and they took me off it cold turkey.  I'm over hear sweatin like you wouldn't believe.  If I have anymore hot flashes, I'll be a puddle of water on the floor.   

    The blood test is to see if there is any cancer in your body.  I guess it just detects advanced stuff, but they give it to you after a year.

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  • peg119
    peg119 Member Posts: 281
    edited February 2010
    kawee - check out the thread Bottle 'o Tamoxifen on this blog.  It moves really fast but has a lot of helpful information.  I have been on Tamox since August and have had hot flashes (they seem to be decreasing), back pain and some difficulty sleeping.  The thread also has lots of helpful ideas such as taking vitamin E to reduce the hot flashes.  They put me on Effexor to reduce the hot flashes but I didn't notice much difference so weaned myself off of it after talking to my onc.  A lot of the ladies say their side effects seemed to decrease after months of being on tamox.
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  • ccbaby
    ccbaby Member Posts: 985
    edited February 2010

    Yeah, when I look back...I can't believe that I have had so many appts and I don't know how I managed to even have time to go to work too!!

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited February 2010

    Kawee - I've been on tamox. since August. The first two weeks I had hot flashes. After that they mellowed out. Now I get a face flush...but that's it. I also had a little trouble sleeping but that too went away with time. Like Peg said I think Vit. E has helped. I'm actually sleeping better than I have in the past few years. No aches or pains. But we all have to make the decision for ourselves. I don't think there is a right or wrong way, as long as we feel good about it. I'm not sure I'm going to take the drug they recommend after tamox....as I had terrible bone pain with chemo and it causes bone pain. I will cross that bridge later this year.

    I got my blood work back. I'm finally not low in WBC & RBC but my lymphopenia # is low and monocytosis is high, plus my small platelets are low. All indications of an infection...that's while I'm currently on another antibiotic. The onc didn't seem concerned, so I'm not. Today is my last day on trental...my drugs have been shipped from India but I haven't got them. So we'll see what happens. The study said...do not stop it early! One more thing out of my control. It will be what it will be.

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  • ccbaby
    ccbaby Member Posts: 985
    edited March 2010

    Girls.....I am so excited about tomorrow....I will have my LAST Herceptin treatment!! It has been a long year!!  I remember thinking that this day would never come! And once I have my second stage surgery to my reconstruction in a week and a half,  will be done with everything until my next CT scan in 6 months!!!!

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  • kawee
    kawee Member Posts: 324
    edited March 2010

    Yea for you, Christy!!  We've all been thru so much, but especially you.  One day we'll all be done with this @#%$!!!!

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Congrats Christy!  Now you can join the PFC group. We are doing a happy dance for you.

    Betsy

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  • ccbaby
    ccbaby Member Posts: 985
    edited March 2010
    Thanks Kawee & Betsy....I have been in the PFC group since July...This will be the PFH!!!   LOL  I am so happy not to have to go back in 3 weeks for another treatment after a year!!
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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Yay Christy! 

    I have been posting this in chemo 2009 and tn...my beautiful baby daughter..who is 21 just got engaged tonight to her boyfriend of 5 years..He is a sweetie...They are so much in love..do you guys remember that feeling...from when you were so young?  Life does go on..freaking cancer or not....it is just a little different now....the past year has..seriously been about ME..and that is ok..now it is time to focus on "THEY"..whether it is your job, your family, whatever it is...I think i am ready to move on now...to things not associated with ME...I never really enjoyed the attention anyway, the gifts, flowers, food..they were all wonderful but dang it..I want to be the one giving..not the one receiving...do you understand where I'm going here or am I just rambling?

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  • MTG
    MTG Member Posts: 646
    edited March 2010

    Titan - Titan, congratulations on the engagement; it'll be fun and exciting and positive to focus on planning a wedding vs. talking about this stuff !

    And boy, oh boy, do I understand  EXACTLY what you mean about being more than ready to move on ! My family is still treating me with kit gloves. Just today when I offered to help out with a family matter, my brother told me "You've got enough on your plate already." I have nothing on my plate and told him so. I'm sick of being sick and frankly I feel fine and, unless/until I'm told otherwise, I am fine. Now I just have to figure out what to do to get back into the thick of things, including work and a scoial life.

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Titan - oh so true about moving on. Again...congrats to you and your DD, how exciting!

    It has been all consuming and totally about "us" for the last year. Life moves on, and so must we. I for one am ready. I don't think I recall ever being so self centered as I have been this past year. I know it was mostly because my body demanded it.... but like you it's good to get back into a more normal groove. I'm just keeping my fingers crossed that my body holds up.

    My antibiotics are done, I still haven't received my trental from India....so those of you that pray...keep me in your prayers. I do not want to go back to square one. Maybe I'm just being a little paranoid but tonight my chest feels tight again. OMG...I do not want to start this all over again. It's only been two days since my antibiotics ended...it can't possibly start up again so soon?

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Betsy...why does this take so long to get your drugs..I'll pray for you!

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  • echosalvaje
    echosalvaje Member Posts: 191
    edited March 2010

    The moving on thing is so true. Yesterday was my one year canserversary and I am so ready to dive into spring and do all the stuff that surgery and treatment would not allow me to do last year. I am starting to get some clients returning that didn't want to impose work upon me while I was sick. That was fine at the time because frankly, I was pretty darn weak. But now I'm ready and need the money!

    We've had 4 sunny days in a row after a winter of non-stop gloom and rain, boy is that invigorating! I'm gonna finish my coffee and get out there and get my hands in the dirt, WoooHooooo!!!!!!

    Betsy I'm praying for you and all my sisters here that you transition into new life without the needling persistence of cancer woes trying to mess it all up. Be well girls, Mary

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  • ccbaby
    ccbaby Member Posts: 985
    edited March 2010

    Hi Girls...here is another update with me. I am in NOLA right now and will have surgery on Wednesday for my stage 2 breast reconstruction.  Today is pre-op consult with the surgeon, so that means that tomorrow my husband and I can do some things around town. Too bad it is suppose to rain all day here!

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Good luck Chrsty,,,you sound very, very good..and you look awesome too!

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Christy, I hope everything goes very smoothly for you on Wednesday. Sending you positive thoughts.

    Titan - not sure why things take so long to get here from overseas. I've heard it takes just as long from Great Britain. I probably should have just ordered it from Canada, it would be here by now. But I could only get a 15 day supply, so it didn't seem worth it to me.

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  • kawee
    kawee Member Posts: 324
    edited March 2010

    Christy, Good luck.  You do look good.  Love your hair, wish you could do mine.  No one here can get mine blonde enough.  Don't know why.  They're all so conservative.

    Went to Onco today.  He says my chance of reocurrence is 15%.  With tamox it cuts that in half.  He agreed to let me start on 10 mg for a month to get my body used to it, then go to 20 mg.

    I have gotten so afraid of Drs. now, that my blood pressure goes sky high, I mean like 190/95 when I go.  My heart pounds out of my chest.  I get a major anxiety attack when I go in there.  Don't know how to get over it.  I was always a little like that.  But now, it's full blown.  The only place it is normal is at my rheumatologist where I have been going for years.  Even then, I'm a little nervous now, but it's 140/80.  Anyone else developed that?     

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Ok...stupid question..but why can't you get it from the United States?  Aren't we supposed to be the leading nation for this kind of stuff?  No offense to Canada or Europe...!

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Kawee...my bp was 190/102 on my last visit, ridiculously high. But I told them if they would take it before they tried to extract blood from me, it would be much lower. I've always been a difficult blood draw...now it's almost impossible. I had to hold my hand under hot water for 5 mins. before they would try my hand. The first attempt failed, the second attempt on my hand failed but she got it with the third attempt. I hydrate before as much as possible. I'm giving up and not worrying about it. But I know I get super stressed about it while they are pounding my arm and poking me. I'm already on a double dose of Lisinopril and hydroclorithizide (sp?)...for high bp. Try not to stress over it, it's probably just white coat syndrome. I'm sure they are watching you closely and will recommend meds, if appropriate. 

    Whew!! Just had a major hot flash! I'm sure my face is bright red along with red hot mama, that's what I've decided to name my boob. She is swelling again...still no drugs. I asked at the pharmacy today, it's still on back order. Damn.

    Am I the only one continuing to gain weight? I stepped on the scale yesterday and just about had a coronary. I have never weighed as much in all my life. It's scary!!! I'm watching my portions. My excerise routines are not back to normal because everytime I start I have a set back. I have been doing stretching and a little bit of pilates. It's kinda depressing.

      

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Titan - they don't manufacture it in the US, probably due to NAFTA. All the pharmacies on the west coast get their supplies from China, or at least that's what the researcher that is running the study said. I'm kicking myself for not selecting Canada when I ordered, I bet I'd have it by now.

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  • kawee
    kawee Member Posts: 324
    edited March 2010

    Betsy, I have gained 8 pounds, maybe doesn't sounds like alot, but it is for me. 

    Can you check on that med and find out if it's been shipped?

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  • echosalvaje
    echosalvaje Member Posts: 191
    edited March 2010

    Betsy, I put on an extra 20lbs. during chemo. That must be the down side to having anti-emetics that work so well, eh? Like you I think I'm starting to get "moving" again and then something comes up and I don't get to yoga or go for that walk I said I was gonna do...........Being on the Tamoxifen doesn't help. I am trying to be patient and not put any added stress to the task of getting healthy with a time constraint. Don't beat yourself up over weight....you're still healing ;)

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited March 2010

    Hey ladies...I web chatted today with the company that sent my meds. They said it was in the mail and said to contact them in 2 wks if I haven't received it. Of course, tonight when I got home my dh came rushing in and said he tried to pick it up from the PO but realized when he got there he was too late. What a sweetie...So on my way to work tomorrow I will pick it up. At least it's here. My dh wants me to call the bs cause red hot mama...is returning to her roots. I guess I will call and let them know that once again two days after the antibiotics ended hot mama is back. Each time it gets slightly better...but it's still not right. So the saga continues.

    I don't think I'm beating myself up about my weight, I'm just not happy with it. Mostly I'm having trouble with who is looking back at me in the mirror. It's hard to get my mind around it. Thanks Mary & Kawee for your comments, at least I don't feel alone. I love the support on this sight. I'm not sure what I would do without you ladies. THANKS

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  • MTG
    MTG Member Posts: 646
    edited March 2010

    Damn Betsy....Talk about the Red Menace....or better yet, the Red Boob of Courage. Your patience is amazing and commendable. But are you being too patient ? If you haven't yet, maybe it's time to seek out a specialist ?

    As for the weight thing, it's  driving me nuts too. All my summer pants must have shrunk ! Many wont even close ! And even my BS suggested that maybe I should work out. ..so I  think better do something soon.

    On a less funny note, it looks like I'm going to be switching to an AI since I'm apparently a Poor Metabolizer of Tamoxifen. I may try simply upping the dosage for a few months; haven't decided yet. But Arimidex and Femera, etc are SOOOOOO expensive. does anyone know of any prescription insurance that can be purchased separate from health insurance that will give me good discounts on these things ?  

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    I have gained 15 lbs...people say I look healthy!  I think I look fat..I feel like I waddle..I hate the feeling of fat..my low cut jeans are really low because I can't pull them up any higher,..when i sit down I pull my belt up over my gut.

    But..I'm still always so hungry!  I think once you start eating..well it's hard to stop!  Yikes! 

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