Starting Chemo Feb 2010?

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited January 2011

    Burley-sending prayers and hoping it is nothing. 

    lbreedl-i actually switched oncs due to the follow up practices.  My old onc didn't do any follow up.  No tumor markers, no scans, or anything.  In addition, she felt that my vit D sitting at 31 was fine.  This just made me really uncomfortable.  So, i did research and have a great doc that doesn't routinely do scans, but he feels if I am anxious for whatever reason, he will order a scan.  He says your mental well being is just as important as your physical.  In addition, he does tumor markers, tests to see how you are metabolizing tamox and wants to see my vit D levels at least somewhere in the 60's. 

    I am so glad that i made the switch to get an oncologist who is more in line with what I would like to see done.  Boy, breaking up with my 1st oncologists was not fun though.....ugh GL

    V

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  • grdnslve
    grdnslve Member Posts: 310
    edited January 2011

    kim--praying it is nothing--hang in there & let us know

    laura--like you i lurk, but can't seem to write anything...sometimes feel a bit overwhelmed at the continueing issues others are having & trying to be in denial myself.  almost fell off my chair at your reference to the hee haw gang....i do remember that!!

    finally made it to arizona for the winter & am trying so hard to forget about all this stuff we have been through.  i told my onc before i left i was filing for a legal separation until may--then he could order what he wanted for follow up, but until then leave me alone.  aren't we all over the place on the way we react. 

    my hair is about 2" long finally, and since i have been down here have been going without a hat.  an aquaintence of ours call this snowbird country 'gods waiting room' (sorry if that offends anyone) so that strangely gave me the courage to just be me  - whatever that is now.  in the warmth i have been able to be more active, but sure do ache.  it is embarrasing to hobble around worse than folks who have 20 years on me. 

    sorry for not chiming in with holiday wishes, but have been in such an emotional place with all the 'anniversary' stuff, everytime i tried to write, ended up deleting it.  will see if this one gets posted.

    ta ta everyone & take care

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  • ginadmc
    ginadmc Member Posts: 263
    edited January 2011

    lindee - glad to hear your path report was good but it stinks that you had to re-live that kind of worry and stress again. Sorry to hear about your LE but it sounds like you're right on top of it and doing the right thing for it. Your hair DOES look great! You look so pretty in your new picture. I was fitted for a sleeve for flying and have used it twice. The lymphadiva sleeves are quite stylish! Take care, Gina

    burley - hope the lump is nothing. It's very hard not to go "there" when you find a lump or have an ache/pain that doesn't seem right. We are all hyper aware of our bodies and any changes right now. It's going to be diffcult to manage the worry, especially since we are all still so close to it. Take care, Gina

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  • burley
    burley Member Posts: 631
    edited January 2011

    Help-question...

    If this does turn out to be cancer again, what effect does radiation have on my implants?  Do I have to have them taken out?

    Part of the fear for me is what happened to my mom.  She got breast cancer at 44, had a double mastectomy with immediate reconstruction, then the cancer came back a year and a half later.  At that point, it was in the lymph nodes in her neck.  So although she had immediate chemo and radiation, she died 8 months later.

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  • Grazie47
    Grazie47 Member Posts: 94
    edited January 2011

    Hello Ladies, sorry I haven't posted much, but I lurk everyday and rejoice at everyones positive progression and mourn for those with complications through this awful journey.   

    I am now finished with chemo, radiation and a year of herceptin - geez has it been a year already.

    During all this they found a brain tumor, so Brain MRI's for me, so far it has not grown and the neurosurgeon is inclined to believe it is a menegoma a benign tumor.  Will have to get MRI's every 6 months to watch it.  

    Had a  echocardigram, they found a possible tumor on my heart - Yikes, could it get any worse.  So a TEE was scheduled and they discover not a tumor but the leads from my port close to my heart.  Will be getting deported soon- well hopefully, had my PET scan will know the results in a few days and then they will decide if I get deported or reposition my port.

    Just so I don't feel too comfortable I have developed a small lump above my mascetomy scar, sent for an ultrasound where it was diagnosed as a "fatty tumor"  Really, "fatty tumor" they couldn't give it a more professional name.   A week later developed another one, so last week had surgery to remove both of them, both benign. 

    Have slight lympedema in my arm and moderate lympedema on my left side - looks like I'm trying to grown a new boob on the left side of my chest.  Will see the surgeon tomorrow and ask if this new boob can be removed, it is annoying.

    I feel great, am almost back to my before BC energy, I do suspect that I will never get all my energy back.

    Thank you Ladies, I couldn't have gone through this without all you help, you are a all in my prayers.

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  • grdnslve
    grdnslve Member Posts: 310
    edited January 2011

    there is a more 'professional' name-- lipoma. but fatty tumor  sounds better.  anything with 'oma' on the end seems to make ones skin crawl upon hearing it.

    sounds like you have your challenges grazie--hang in there!!!  sat was 9 years since my benign brain tumor was removed..but it wasn't discovered until it was really large.  starting to hate january.

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  • burley
    burley Member Posts: 631
    edited January 2011

    Grazie-what did the lump feel like?  Mine is hard and shaped like a pea.  I'm freaking out-MRI results tomorrow afternoon.

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  • Grazie47
    Grazie47 Member Posts: 94
    edited January 2011

    Burley,

    Hard and shaped like a pea, sounds exactly like mine.

    Good luck tomorrow

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  • Grazie47
    Grazie47 Member Posts: 94
    edited January 2011

    grdnslve 9 years, thank you for that information, very encouraging. 

    burley  Your lump sounds exactly like mine, it just popped up overnight, Radiologist found the first one, a week later I found the second one,  2 weeks later they were removed.  MD said it is from trauma to the breast - WHAT - I had no trauma to the breast - Yes you did - No I didn't - yes, radiation, can be considered trauma, I was four months post radiation, swelling can be considered trauma to the breast - BINGO - I have moderated lympedema in the chest wall.

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  • lbreedl
    lbreedl Member Posts: 59
    edited January 2011

    Verene: thank you so much for the encouragement to make the change. I have an appointment next week with the oncologist Iocally where I get herceptin. I'm going to see what he says & ask him to do the scans & my follow up. I hate to break ties with MD Anderson do I may continue with the mammos there.

    How are we being followed up? I'm going to ask for scans but which ones & how often? My other Dr just wanted mammos every 6 months. Any comments would be appreciated!

    Burley: I'm sorry you're having issues & given the history with your mom I understand your feelings. Know thare are many of us praying for you & wishing you well.

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  • mofend
    mofend Member Posts: 140
    edited January 2011

    Hello, everyone - Burley, I've been thinking about you and hoping you get good news soon.  Please know we're all here for you always.  

    The question about follow up is an interesting one - there doesn't seem to be one standard of care and it seems to be very willy nilly with the docs.  They all have different opinions.  I have an appointment coming up with my onc and I'm going to press him on this issue - it is scary how many different opinions are out there and you don't know which one is right.

    On the good news front, my best friend just found out today that the big mammo scare she was having turned out to be a benign cyst - sigh of relief.  Mo 

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  • CinD
    CinD Member Posts: 163
    edited January 2011

    Kim, I hope you have some good news very soon.  That just sucks that you have to go thru all of this worry.

    Lindee, that's great that your results came back benign!  Sorry you had that scare.

    Grazie, it's great to see you!  It sounds like you've had quite a ride.  I'm very glad you're feeling good now.

    Michelle, I hope your treatment is going well.  

    Laura, I had a CT scan and bone scan at the time of diagnosis. It was a relief when they told me everything looked OK.  The bone scan found a little arthritis in my hip and, of all places, my toes. How in the world did I get some arthritis in my toes?  I'm hoping they don't do CT scans very often because they expose us to a lot of radiation, much more than regular x-rays.  One article I read said that the radiation exposure of 1 CT scan of the head is equal to 30 regular chest x-rays; 1 CT scan of the chest is equal to 119 regular chest x-rays; and 1 CT abdomen scan is equal to 234 regular chest x-rays. Some doctors are more careful in ordering these tests because they may lead to cancer down the road.Ugh. With radiation, the risk accumulates over time. I'm sorry, I don't mean to scare you, but I'm just giving a reason to proceed with caution on our CT scans. Personally, I'm glad I had the one done and believe there is a need in our case, but I'm in no hurry to repeat it without sufficient cause.  

    Our Herceptin girls must all be finishing up now.  Congratulations to those who are done or are close to it!

    I'm feeling really good these days. My hair actually has a little style to it now and is slowly making its way to my shoulders. Anything to cover up this wrinkled neck that has emerged this past year!  I lost 10 pounds when this all started over a year ago, and I've luckily been able to keep it off.  I'm taking more time to just relax, taking 30 minutes a day to lie down with soothing music in the background and my dogs curled up beside me. It's amazing how relaxing and refreshing this is.

    As always, my thoughts and prayers are with you all.  I'm sorry to hear some are having lymphedema. I hope everyone's aches and pains are going away.

    Cindy


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  • lindee629
    lindee629 Member Posts: 61
    edited January 2011
    Burley--any results???  I am hoping and praying that its not anything too worry about..... this sucks. I don't know if any of us will ever feel healthy again.
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  • burley
    burley Member Posts: 631
    edited January 2011

    Whoops, sorry-just realized I hadn't posted anythhing about what's going on.

    Saw my Onc on Tuesday-the MRI showed no malignancy, but since there is so little breast tissue left, the radiologist recommended an ultrasound to confirm it.  So he referred me back to my breast surgeon.

    Finally got in with the breast surgeon yesterday, and he had already talked to my oncologist and reviewed the MRI. He said he wants it out.  A little frightening.  He said he doesn't like sticking needles into lumps when there are implants involved, so he just wants to go ahead and remove it. 

    So!  I'm scheduled for surgery Monday at 6:30 in the morning.  This means a check in time of flippin' 5am...my husband almost died when I told him.  At least I won't go the whole day without food, but I'll have to have a neighbor take my daughter to school (and hopefully she wakes up on time and gets herself ready.)

    I'll be glad to know exactly what it is before I leave the hospital.  It will definitely put mine and my husband's minds at ease.

    Thanks for checking on me, girls-I'll let you know what happens : )

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  • faithfulc
    faithfulc Member Posts: 284
    edited February 2011

    Hi, Feb 2010 girls.  Hope everyone is doing well.  How come there has been no posting after 1/22/2011?  It's been more than a month!  Kim, did your surgery go well?

    I think my life is pretty much back to normal (knock on wood), although at 41 I still don't have my period back.  Who knows, I may never get it back.  Birthday is coming up in March.  In December 2009 I truly wasn't sure if I'd make it this far.  I always hoped, but didn't know.

    This has been the craziest winter season for a long time - hope spring comes soon.

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  • grdnslve
    grdnslve Member Posts: 310
    edited February 2011

    guess we've all been busy.  we are enjoying the sun in arizona & after seeing the weather reports, not too eager to even think about heading home.

    after seeing a flyer about the benefits, i went for a reflexology appointment.  other than her telling me i was 'full of anger & self pity' & having the gum i was chewing on liquify in my mouth, it was pleasant.  i ended up going back, and think it may be helping the neuropathy.  so goody.  has anyone else tried this?? 

    had my birthday a couple of weeks ago & dh went out of his way to try to make it special  & make up for last year.  so happy birthday faithfulc.

    anyone else have tearing eyes still?  not sure if they are just super sensitive to moisturizers i use or what, but it is annoying.  any suggestions would be appreciated.

    ta ta

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  • lindee629
    lindee629 Member Posts: 61
    edited February 2011

    Hi Girls.....just checking in. Doing good and feeling fine, lol. I actually had to cut my hair because I couldn't handle the wacko curls. I swore after it started to grow again i would never cut it again HA!  Keeping my lymphedema under control I think, wearing my compression sleeve and gauntlet during the day, bandages at night, and OFF when I have somewhere nice to go. So far so good, although not sure how well this will work out once the warmer weather gets here and I'm not wearing sweaters all the time.  Other than that, no complaints.

    A co-worker of mine was recently diagnosed with colon cancer at the age of 43...very unusual. She is just starting chemo, and although her regiment is different than mine was, it is certainly bringing back memories. WOW, its been over a year since most of us started our chemo journey.  I remember how scared and sick and disgusted with everything I was a year ago (I started on Feb 2, 2010). I remember thinking that I was never going to get thru it all. But here we are, a year later!  So Happy one year anniversary, fellow Feb Chemo gals!  How are you all doing? Burley???  Hope all is well with everyone.  Take care!! 

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  • burley
    burley Member Posts: 631
    edited February 2011

    Hey girls!  Yes, congrats to each of us for our one year anniversary!

    Had the ovaries and tubes out last Monday-I'm in a lot of pain still, and I have a high pain tolerance.  Percoset has become my friend.  I've been off work for a week and go back tomorrow, so this should be interesting.  I plan on sitting on my butt the entire day.

    No tearing eyes luckily-that stopped about 6 weeks after my last treatment (thank God.)  That was horribly annoying.

    Lindee!  I'm so jealous you've had to cut your hair!  I'm guessing that I've got at least another month before I can go without the wig to work.  My sides and back are still growing at about three times the speed of the top of my head.  So I'll get them cut one more time, get it dyed something fun, then bare it all.  The end result should be a really short pixie cut.

    My eyelashes finally stopped falling out (for the second time), and are growing back in nicely.

    You know what's funny is my mouth has never felt the same.  I can't tell if it's my tongue or the insides of my mouth, but it feels rough all the time...kind of like when I had lost all my sense of taste and had healing mouth sores.  Very strange.

    Well now that the ovaries are gone, I'm being switched from Tamoxifen to Armidex.  Anyone heard of that?

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  • Ado
    Ado Member Posts: 89
    edited February 2011

    Glad we are all doing well. Burley, my Onc has said that I will switch to Arimidex next year as i am 51 and was entering the menopause when all of this started. I think Tamoxifen is only used if you are still or could be ovulating but may be wrong.

    I have my first hair cut arranged for March. I'm keeping it really really short and hopefully will get some highlights. My hair used to be straight and light and came back dark and curly ! It is like looking at someone else in the mirror.

    I am feeling mentally and physically better and seemed to turn a corner after Xmas. I have lost 11 pounds by portion control and spinning classes. I'm addicted. It really makes me feel good and only lasts 45 minutes and the results are great.

    This time last year I was also convinced that I wouldn't be here now. I live life so differently now, am grateful for my health and family and don't stress about the little things. When I look back to how I was before all of this full of angst and stress I can't believe it. I keep trying to tell others to live each day and enjoy. We have our first holiday booked for May, 4 days in Italy and plan a cruise in August.  Life is good !

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  • mofend
    mofend Member Posts: 140
    edited March 2011

    Hello, everyone!

    I miss hearing about how everyone is doing, but I know we must all move on.  My hope is that everyone is healthy and putting 2010 behind us.  It seems like there's lots of little reminders each day about what we've gone through - from constantly seeing it in the media to walking in the market and seeing someone who is obviously going through treatment, to little aches and pains from Tamoxifen, to the fear that rises from above about what if....  I think we'll all be in a constant state of hyper vigilance about this disease and I guess it's just a matter of putting it in perspective.   Still seeing a psychologist to help with that part!  It's been very helpful and cathartic. 

    On a really happy note - I turned 50 (it has to be better than 49) a couple of weeks ago and my family and friends threw a giant surprise party for me, which totally blew me away.  I had no idea and they pulled it off really well.  They had it at the Phillies stadium (I'm a huge baseball fan) and we were on the field, in the dugout and the locker rooms, and in a really cool reception area for the dancing, dining and fun.  What a shock it all was!  I thought my post herceptin heart wasn't going to hold up there for a minute, but I managed to gather myself together and had a ball.  It was so nice to see everyone who had supported my family through the last year and be able to spend some happy time with them.  I hope you are all having lots of happy moments these days and are enjoying the coming of spring.

    Take care, best wishes, and keep in touch - Mo 

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  • retrievermom
    retrievermom Member Posts: 522
    edited March 2011

    Mo:  That's neat about the surprise party.  I don't like to hear folks whine about birthdays--I think they are great times to celebrate, and I'm darn glad for each one I get!

    I'm with you on the reminders.  I say to myself, "this time last year..." and realize how far I've come.  I have a co-worker who just had her second chemo round, and I saw her with her newly-bald head for the first time today.  I am glad to be a source of info and support to her, and have given advice to others at the workplace as to how they can help in tangible ways.

    I'm glad seeing a psychologist is helping you.  It's always good to have someone to talk to outside our family/friends circle.

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  • CinD
    CinD Member Posts: 163
    edited March 2011

    Mo, happy belated birthday!  Your party sounds like it was really great. 

    Ado, congratulations on the weight loss and turning the corner physically and mentally. Enjoy Italy -- I'm jealous!  Smile  It's been years since I've been there but I remember loving it.

    I had my 6-month checkup with my oncologist last week.  I'd worked myself up a bit, but everything turned out fine.  My vitamin D levels have gone from 28 to 45, my tumor marker test was good (actually a point lower than last time), and neither he nor his assistant felt anything odd on examination.  They ran hormone tests and say that I'm not yet post-menopausal, a surprise since I'm 50 and with the chemo shutting everything down. 

    The weather has been beautiful here, so I've been out walking the dogs and biking. I think getting all that sunshine has helped up my vitamin D levels, since I'm only taking 1,000 units daily.  I'm scared to get that first haircut especially since my goal is to grow it long again. It's still thick, wavy and mostly red (a few white strands peek out from time to time.)  I'm so bad, I just realized a couple hours ago that tomorrow is our wedding anniversary. Hubby had forgotten too, so I don't feel so bad.  It just doesn't seem like it's already March. My internal calendar has been all messed up since I was first diagnosed.

    Hope everyone is doing good and checks in from time to time. My best to all!

    Cindy

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  • Ado
    Ado Member Posts: 89
    edited March 2011

    CinD thanks for response. I'm also enjoying walking the dog. I lost my 13 year old Golden Retriever a couple of months ago. He was 13 but at least  I had the last year at home with him even if it was a rotten year from the illness point of view. My 12 year old is now becoming ill but agin I love just wandering with him. No time this pm though !st Haircut at 13.30pm. Am very nervous. 

    Great to keep in touch with everyone. 

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  • faithfulc
    faithfulc Member Posts: 284
    edited March 2011

    Happy anniversary CinD.  And what a great birthday story from Mo.

    I keep thinking about "this time last year" as well.  Seem to be quite healthy at the moment.  Sometimes though if I exercise a bit more, there is a slight pain in my right thigh, not sure if it's the bone.  I don't want to sound paranoid, but I'm definitely on the alert.  Will have to get this checked out if it lingers.

    Strange thing is that hair became a bit curly for the past couple of months.  My last chemo was in May 2010, and it's been all straight new growth until my hair cut in December.  Folks ask me if I got my hair permed...  I kind of like it - it's wavy but not crazy curl yet.

    Hope everyone is enjoying spring.

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  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    I didn't find this site last year when I started chemo - finished May 2010 - but if you wouldn't mind... I would love to join in now?  CinD mentioned having tumor markers checked - it appears to be routine.  My onc said he doesn't check these... are others getting them checked with some regularity as well?  Do you know why... for example your onco score or some other reason?

    Faithfulc - I have a pain just above my knee when I exercise - it causes the same thought you are having...

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  • Ado
    Ado Member Posts: 89
    edited March 2011

    Welcome Starbeauty this site is great and has got me through many a bad time over the last year. 

    I don't know anything about tumour markers. The hospital I am at in the UK does not do any tests or scans at all ! I was quite shocked but the Onc says it is better as if anyone notices a symptom they can guarantee to see then within days. I still think I'd rather have a scan. I also worry about every pain and became paranoid before Xmas about my shoulder. I really thought it was cancer and was scared and very emotional. I had an X Ray and the doc confirmed it was all ok just a frozen shoulder which is very painful but I can put up with that . Apparently the chemo induced menopause does affect the joints. My fingers are also stiff and my hips ache but I am managing to exercise. I go Spinning which is hard work but makes you feel good afterwards and gets the weight off. Anyone else tried it ?

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  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    What is Spinning?

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  • ginadmc
    ginadmc Member Posts: 263
    edited March 2011

    Hi Ado, I do not have any scans either. I, too, worry about the different aches and pains post-treatment. My elbows and knees hurt like they never did before chemo. I go to a spinning class, too! It's 2x week for 1.5 hours. I've been doing it for several years and I really like my instructor and my classmates, most of us have been in the same class for years. When I was diagnosed and had to drop the class for the semester, they gave me a box of chocolates and a gift certificate to a local bike shop. The facility also let me "drop in" to my class any time I felt up to it during chemo. It is a great stress reliever and helps me maintain my weight.

    starbeauty - Spinning is indoor cycling on special stationary bikes. It's a great workout and calorie burner.

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  • CinD
    CinD Member Posts: 163
    edited March 2011

    Ado, I am very sorry to hear about your golden retriever passing.  I'm sure he was a great comfort to you during your treatment, and you were probably the same to him while he was ill.  I hope your 12-year-old's health returns soon.  I adore my cocker spaniels. We adopted them from shelters when they were 6 months old even though I swore I wouldn't have any more dogs after my two old girls (cocker spaniels too) had passed 2 years before. I'm so glad we went ahead and got the babies!  My two girls are so sweet and helped me so much during treatment.

    Faithfulc, thanks for the anniversary wishes.  I think it's normal for us to be a little paranoid about our aches and pains. My joints had been a bit achy, but they're better now. I wonder if the fish oil I started taking is helping my joints.

    Starbeauty, you are very welcome here!  This thread doesn't get much activity any more, but I like to pop on when something's going on. I find it helpful to compare aches, pains, fears and triumphs with people on the same treatment schedule, and it's nice to see how everyone is doing. It was great when we all started chemo together, sort of like we all held hands and jumped off the cliff simultaneously. A few of us still check in from time to time, so hopefully someone will be around if you want or need to discuss something.

    As far as tumor markers, my onc uses them to see if there may be a problem.  He only uses scans when first diagnosed to see if there has been any spread or later if symptoms show a need.   I've read that tumor markers aren't perfect, but then neither are mammograms, and one of those discovered my cancer in the beginning. It's a blood test, so there's no risk associated with it as there are with scans. It's just one more imperfect tool to help monitor us.

    Have a good weekend, everyone!

    Cindy

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  • grdnslve
    grdnslve Member Posts: 310
    edited March 2011

    ado--very sorry about your friend.  a dog is so much more than a pet...almost a child, certainly the most nonjudgemental friend one ever has.

    our 23 year old poodle passed a couple of years ago, and our other poodle was so depressed, we got a puppy to perk her up.  it worked.  unfortunately it was just before my dx & he didn't get well socialized - a bit of a terror when he sees other dogs.  very overprotective of me.  i need to find a good trainer to help us.

    it is encouraging to hear others complain of the aches-then i don't feel so alone.  have actually fallen a few times after a day of more than normal exercize.  quite embarassing.  am waiting to get home from our lovely winter in the southwest before getting any tests.

    take care all,

    ta ta

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