Starting chemo January 2009?

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2009

    Kim-- Your information is invaluable. Drink water and eat bland stuff.....i so want to teach during this.  Hope I can do it!  My first tx is sometime very soon, within the next week or two.  I was supposed to start Jan8, but onc decided to take the genetic test first....not sure why.  Onc suggested I do the tx on Thursday, neulasta on Friday weekend to recover and then back to school.  I am not sure about the hat/scarf deal--admin might be adverse to it because it is at the high school level and students might balk at it because they can't wear hats/scarves and such.  I tried on wigs and they looked just that-a wig on a bald head.  I will have a very hard time with this when my hair falls out. 

    <:AtomicElement>Kim(Berkeley)-- my union is saying the very same thing that admin might have issues with my working during tx!  Huh???  I will talk to them tomorrow and let you know what they suggest regarding accommodations.  Gosh, where's the love????  I am very anxious about that now...shouldn't have to-makes me angry and more worried every time I run it around in my brain.

    <:AtomicElement>Okay, here's to drinking lots of water!!

    <:AtomicElement>Jess

    <:AtomicElement> 

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  • Kim25
    Kim25 Member Posts: 5
    edited January 2009

    In NJ its against the law to discriminate regarding any medical information.  My admins only concern was getting the right person to cover my classes so that if I did miss, my classes would go on as usual. I am a special education teacher  with in class and out of class responsibilities .  I have plenty of sick days to use.  There was never any question as to what I needed to do, it was what can they do for me.  They make sure the custodians clean my room every night as well as the classes Im in.  They are more concerned about me getting sick with the low white count. Regarding students and what they can and cannot wear (district policy) and what I wear was never questioned. Admin cannot state what you have to wear in my district as well as if the students are educated during this process it would make it clearer. My team is all for the natural look, (bald is great) but when I do where a hat there is never a question.  I have been in four other schools within the past month coaching girls b-ball and again no issues, just plenty of well wishers and support. Please research what the law is in your state.  Everyone needs to be educated. Good Luck

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  • tibet
    tibet Member Posts: 545
    edited January 2009

    I am also on chemo in Jan. I have had 4 times bi weekly EC and now started 12 weekly taxol and carboplantin.

     Jas,

    I read you had negative nodes but lymphovascular invasion. How coud one have lymphovascular invasion but negative nodes? Where did the invasion go?

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Hi everyone,  I just got my drains out today, what a weird feeling that was, it seems tha above my armpit area is swollen but they seemed to think that was normal??

        I hope every ones chemo is good my was a/c off for 21 days and I did so well I did not have to do my third one, we will find out soon if I need to do more!! 

    Please remember the water and the emends pills if they offer them to you they re xcellant!!!   I go back to work full time after two weeks..............I feel my boss is worried a little I run a preschool of 100 children but sitting down is most of my job!!

                      I know this is a chemp thread but can anyone throw in how they did after their mast for me?? Thanks Pamela 

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Pamela, I had numbness and swelling.   Still do to some extent.  My mast was 11/11.   I think the numbness stays for a long time.   I also built up some fluid after the drains were removed.  I was aspirated 3x after that.   The last time was last week.   Not sure how normal that is.   My BS left quite a large amount of skin which resulted in a couple pockets where fluid could accumulate.  That is for my reconstruction which I will have done after my treatments are complete.  I did very well after the surgery.  I only missed 2 days of work.   But then I was able to work from home.  Made a big difference.    I posted a pretty complete rundown on my surgery last week. 

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    pamela, i had a double mastectomy on 11/20. i had no pain (thanks to lortab the first two days) and very little swelling. i had my drains out a week after surgery. my chest area is still numb and i'm told that is mostly permanent. it's been six weeks and everything has healed completely and i am able to take a bath and also exercise on my rebounder/trampoline and run on the treadmill.  the two incisions areas for the drains were tender for about three weeks after surgery. all in all, it was an extremely easy surgery and recovery.

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited January 2009

    OK, I am new to this post and am just jumping in.  I had a lumpectomy in October and a bilateral mastectomy with implant reconstruction on December 1st.  I start chemo Friday and am really freaked out about losing my hair and being sick, etc.  

    My employer is quite insensitive and very by-the-book.  I have used up a lot of time for surgeries and will have to work through most of the chemo, 4xs Adriamycin and Cytoxan biweekly, then 12xs Taxol weekly.  At some point in this process I will even run out of unpaid leave.  A visit to a lawyer is the last thing I feel I should be faced with right now but I suppose I may have to.  Really though, where is the love???  I could put everyone to shame with my various gripes, so I'll just stop myself right now.Yell 

    Anyway, I am in the January chemo club.  I will bookmark here and will try to read everyone's posts.

    To the young woman from Ireland, I feel for you especially because you are so young, so far from home and with small children.  I hope things are going OK for you.   

    Anyone, feel free to contact me at any time, and hang in there!

    Nancy 

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  • AZStacey2008
    AZStacey2008 Member Posts: 12
    edited January 2009

    OH my GOSH Jan Chemo Girls!!!!  Has anyone had the ACHES from Neulasta????  If so, what in the world can you do for it.  I hurt EVERYWHERE!!!!!  Especially in my neck and shoulders.  It's horrible!!!

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  • PinkLaddy
    PinkLaddy Member Posts: 133
    edited January 2009

    Hi AZStacey,

    Try Aleve. Also did you take Claritin today??

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited January 2009

    Pamela -

    I had a bilateral with implant reconstruction about five weeks ago.  It was challenging at first but I can function more or less normally at this point.  I took Hydracodone for the first week which really helped.  I was in bed most of that week and needed help washing my hair.  My chest was very tight.  It felt like a metal bar was pressing against my chest.  My left toes had some odd, occassional numbness which is nearly gone now. 

    At three days I could sit up without help but the bruises really deepened at that point.  After a week I could start lifting my arms overhead.  By the end of the third week I felt OK to be moderately active and the bruises were nearly gone.  I also had drains in for three weeks...there was so much fluid.  I still have some puffiness under both arms but it doesn't restrict movement or bother me really.

    There was a right axillary dissection as well, and that armpit and back of my arm are still numb.  It is weird to shave there because it is a little swollen and I can't feel the shaver on that side.  Doing deep, slow stretches while taking long breaths has helped so much with sensation in general.

    The sense of pressure and tightness are also greatly diminished but I do still have them.

    All the best.

    Nancy 

         

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    I also have a bit of numbness and swelling after my bilateral.  I had 17 nodes taken between 2 surgeris so some of the numbness may never competely leave.  I'm ok with that.  I'll take my life and numbness over cancer any day LOL!

    I went to a physical therapist today who specializes in lymphedema.  I was stretched out quite a bit and now have "homework" in the form of exercises everyday.  I also saw a massage therapist who worked on moving some of the fluid from under my arm.  Interesting.  It was VERY light movements....we'll see if it works!  One thing that I think was great is that she measured both of my arms....all the way up and down my arms from wrist to armpit.  So, we have a gauge of where I'm starting and we'll know if I'm swelling up.

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all:

    AZ stacey: I had terrible aches the day after Nuelasta--like the flu. Neck, underarms (like my remaining lymph nodes were infected or something), and upper back. I took a tylenol, which helped, and was a little sore the next day but not too bad. I've been taking Allegra (like Claritin I think) for allergies, which might have helped.

    Pamela: I had L mast 11-12, and I  called my bs today because I'm still feeling numbness and fullness, which seemed to increase the last couple of days, especially around back toward my scapula.  Now I feel a bit better. He said that he healing process can be slow. I'm going to get a referral to a PT/lymphedema expert to make sure I'm doing what I should be. My range of motion has really improved, and I can almost lift my arm over my head (with lots of joint creaking). I feel if this arm thing would go away I could handle everything a lot better, including the hair loss which should start soon. Just had some phantom itching and I couldn't scratch it!!!

    Kim--Thanks for the advice. I'm calling my union tomorrow. So far I've been really supported, and my co-teachers have been my angels--bringing food and groceries.

    Year of the hat: There are a few of us in this Jan club who've been through the first chemo, and I think we were all pretty nervous, but it seems like we all weathered it really well. My first AC went fine. I felt a little nausea that night and for a couple of days, but I could eat and drink and didn't vomit. More energy today, but I wish my mood would improve...

    I'm having hair cut short tomorrow. Sh...Went to Looking Good, Feeling Better, which was nice for the free make up, which I need to learn how to use. Got another free wig. They showed us how to make a turban out of a t-shirt. I hope I'll be able to do it myself. Looked kinda nice. Got a papercut while there on my bad arm and ran right to the bathroom to wash it--and today is day 7 when I guess my wbc count is lowest. So far so good.

    Hugs and good wishes to all.

    Kim

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    oh, the best news? today is day 14 of my first chemo cycle.  today everything tastes normal again!  even water!

     i've missed drinking water as it tasted so bad to me.  today, i drank a TON in celebration!!!

    so, for those struggling right now, know that your taste buds MAY come back.  i'm thrilled!

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Lisa: Great news about the taste buds. I guess that's something in my future when I start T after AC. So far no taste bud issues...

    Did you get the sleeve today? I really need the kind of appt you had, as I've heard that it's good to wear a sleeve when doing certain exercise, flying, etc, even if you don't have Lymphedema yet.

    Good luck on your next tx--is it soon?

    kim

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Pamala- I had a very easy recovery from my masactomy and expander reconstruction.  I had a block at the hospital so I was in no pain for most of the first day of recovery and the pain meds they gave me after that wore off worked very well.  They were ready to release me from the hospital after one day but I wanted to stay one more day and have nursing care while my family prepared for me.  Once home I took pain meds for a few days and quickly weaned off to just advil or tylenal, I forget which, though I continued to take a precription pill at night for awhile.  I stayed in bed for a day or two then started getting up a bit.  I was not allowed to raise my arms over my head and under orders to limit my arm movements for the the first two weeks and not to lift anything heavier than a milk bottle.  My parents came to stay with us and did all the cooking, cleaning, shopping and childcare.  I slept alot, read alot and did my guided imagery.  I really took it easy and let myself heal physically and emotionally.  I had alot of trouble sleeping, most likely because I was required to sleep on my back.  Once I had permission to roll over (2wks) I started sleeping through the night.  My drains came out after one week because I had an allergic reaction to the teriderm that was holding the tubing in place.  The itching from that was my worst surgical issue.  I was  given Flexeral at 2wks in case muscle spasms were what was waking me.  I continued to take it very easy for week 3 and 4 but started doing stretchs and moving my arm more but not doing much lifting. I was out of the house alot at different kinds of support meetings, classes and follow up drs visits.  I think I was starting to drive by week 5.  I still have numbness but some sensation is coming back. I was told that not all of it will.  It feels like I am wearing a bra stuffed with something heavy, which I guess in a way I am, but it is under my skin instead of above it.  I am actually more acky now then I was at first but I assume that is because I am using the muscles that were cut and moved now.  I am also itchy. None of it is bad but it can be annoying.  I have some swelling  between my armpit and my breast, it does not hurt but bras can dig into the area if I don't pick the right ones.

     I had a wig consult today. I found it very hard to figure out what looked most like my cut, particularly when the wigs were not my color.  They are ordering a few for me in my color and then I can pick one.  This boutique is in the hospital and they cut and style it for you. If you don't like what they do you don't have to buy it, but there are no returns once it is purchased.  It will cost $400 for the wig, styling and care materials. 

    I also attended a class on blood counts and talked to my boss a bit about returning to work part time in the near future.  

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Lisa, congrats on the normal buds!! Smile

    Pamela, I had a bilat on 12/2.... doing some PT starting tomorrow... but mainly because I *think* I should be able to lift my arm higher than I can at this point and my back hurts (that could be from trying to sleep on my back which is weird and being stiff, not sure).  I found there to be weird stages in recovering from this... at first hardly any pain (really no need for any heavy narcs, but then as the numbness wore off, weird nerve pain came that was disturbing to say the least...happy to say that has died down.... still numb along incision (like it's not me) and still no feeling in the armpits... but moving along and making peace with it.. .I have had no reconstruction yet... I guess someday?... who knows.... maybe I'll embrace looking like E.T. once my hair falls out... then I'll have the whole "alien package".... hmmmm.... note to self:  get some Reese's Pieces... lol).  

    You guys ...I'm driving myself MAD!  Chemo starts Jan 20th... and it seems UP TO ME which regimen... WTH!  Onc first suggested 4 x AC.. then I'm reading in here that TC might be just as good with less SE's...so I call him and say that and he goes "Ok, TC is fine". So I'm thinking WTH!  I changed his opinion with one sentence?  UGH!!  That made me paranoid.... why can't he just tell me which one is better for MY CASE!!  Are they that interchangeable!??  Now I'm reading reading reading about both... trying to make that decision for myself... which one, which one... someone stop me.. my husband is ready to slap me and take away my laptop ... he thinks I should just chill and take his response to mean "either is fine in your case"..... and just be done with it and show up on the 20th and take whatever they give me... 

    Ahhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! lol..... I am laughing at myself a little about this paranoia... but just a little.. mainly... I am pissed that I feel like I'm in charge of this decision and I don't wanna be.....

    Ok, thanks for letting me vent.... tell me what you think of this....?

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Hi everyone! 

    Kim - I actually got the sleeve and gauntlet (goes over the hand) a few weeks ago. Its for flying and for high altitudes.  We do to a family camp each summer in the mountains, so I'll need to have it there.  When I asked about it today, its really much more for when you're exerting yourself i.e. if I hike in the mountains and my heart rate goes up/i'm sweating.  I hopefully won't need it when relaxing at the pool or doing whatever.  but, will I go to the pool BALD!?!?! I don't know LOL!

    Holtbolt, my onc gave me the choice of TAC or TC.  there was a clinical trial that I could have participated in for TAC.  but, my onc felt that the "a" wasn't all that helpful for my receptors....yours are the same as mine.  lots of SE's with "A" and not that much proven as far as benefit.  also, its VERY hard on your heart!

    i chose to do TC....but my onc basically "suggested" the same.  i'd be mad if mine didn't guide me very well.  so far, i am LOVING my onc and her nurse practitioner is amazing. she calls me for the tiniest things and is very responsive. 

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    me again - does anyone elses' head sort of "hurt" as the hair comes out?  i know that sounds bizarre....but my head/scalp is actually sort of in a little pain if i touch it.  so wierd.  anyone else?

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Lisa, I almost drove my kids up to Tahoe winter break, and then thought that if I shouldn't go in a plane without a sleeve, then I probably shouldn't drive up to 8,000 ft! I'm getting one for sure, since I plan on being in the mountains as much as possible as soon as possible.

    I was just thinking about Bald Swimming, visualizing going to my son's graduation from UCSD in June....Take wig/scarf off, slip on swim cap quickly. I sure wouldn't want a burn, but maybe I'll slowly condition my scalp to the sun, or maybe I'll have some peach fuzz by then (if I don't get the next arm of the Avastin trial).

    Holtbolt--I'm still making myself a bit crazy re the decision I already made (but I'm like that--like if I get a chicken burrito then I think maybe I should have gotten the vegie). Your dx puts you at a much lower risk of recurrence than mine, and I think that that might be a question to ask: How much does either drug reduce the chance of recurrence?

    BRENDA from Florida--How are you, and do you have a chemo date yet?

    Good night, and HUGS to all. -kim

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  • auriga
    auriga Member Posts: 315
    edited January 2009

    Hello Ladies,

    I survived my first chemo treatment! One down, three more to go. It really was not bad at all. Just like everyone said. Mostly it was a very long day. I didn't get home until after 8 p.m. and I was just ready for bed. Most likely because I only got 2 hours sleep the night before. Partly from the steroids and partly from nerves.

    The best news the nurse said I will not be needing the Neulasta shot because my treatment is once every three weeks. She said in that amount of time, your bone marrow has a chance to build back up again. I have been reading that SE's from that can be quite painful, so I was very relieved to hear I won't need it.

    I had no nausea last night, and so far feel just fine today. I know it most likely won't stay this way, but so far so good. Thanks for all the encouragement. You ladies are great.

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  • mimi07
    mimi07 Member Posts: 25
    edited January 2009

    Hi everybody.  It is day 5 after TC and I am trying to hang in there.  A little yukky feeling, no appetite, but not terribly nauseous; just tired and want to lie down.  I got my Neulasta shot yesterday, and I don't feel any pain.  Is it working?!?!  Or am I just lucky?  Days are going so slowly.  Good to hear that everybody seems to recover after a week or so.  Looking forward to that!  Checking in with you later.  Mimi

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Hotbolt- Can you get a second opinion to help you decide on which treatment?  I think because TC is newer alot of doctors are not prescibing it yet,.perferring to wait until more is known about it but are not opposed to a patient using it.  I think the doctors at Dana Farber will do a phone consult for patients who can or won't travel to them.  You can check out their web page if you are interested. 

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  • REKoz
    REKoz Member Posts: 590
    edited January 2009

    Hi Everyone-

    This is my second post but have been keeping up with you all as a way of "seeing my future!"

    I believe it was Holtbolt who made mention of hubby wanting to rip the laptop from her and I too am experiencing that same male reaction!  Legally not my DH, I'll call him my DSO (dear significant other.) He has been truly AWESOME throughout except for understanding my time on these boards....he thinks reading about all the bad SE's is not good and just gets me "set up" for being depressed. As I am assuming you boardies know, it is more about education and BEING PREPARED and I'm not depressed. At least anymore than any of us having to deal with all this!

    I said in my orig. post that I had a nasty infection after bilateral with expanders and two weeks ago had a scar revision which looks great. Then stitches popped on the left lymph side which last week were resewn with added permanent stitches for insurance. Saw PS yesterday, looks good and he is giving it one more week before taking stitches out. So, I am behind on EVERYTHING, I can't use this left arm at all, let alone lift over my head for fear of popping. Right arm is great. See Onco. tomorrow and believe he will start me on Herceptin this week. Don't see too many HER2+ on this board but the board specific to that doesn't feel right for me. I want to stay on with all you Jewels as the chemo experiences are the journey I am most interested in NOT taking alone! After stitch removal next week, I am sure to start weekly (for 12) Taxotere and Carboplatin with the Herception. I haven't seen many (if at all) anyone weekly here? Onco. seems to feel with my infection and healing issues, this will be less taxing on my system as opposed to one big blast every 3. Anyone familiar at all with this protocol?

    Andrea in MN.- I lived just south of Minneapolis for five years in the late 80's. My girls were 2 and 5 when we moved there...now 27 and 24!  So, I guess I was alot younger too! But I LOVED living there at that time. I know I couldn't take the winters anymore because I am sick of them here in milder Long Island, NY. But your state is filled with the most kind people anywhere. It wouldn't be as beautiful a place to live if it were warmer cuz everyone would move there! I was never more at peace with myself and my trust and love of fellow human beings then in Minnesota! And I've moved around alot! I am one of your states best cheerleaders!

    Now I'll become a cheerleader for the Jewels as this is board provides that very same positivity about our fellow travellers! Good luck to everyone this week. I'll be back soon!

    Ellen 

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited January 2009

    Kim -  I am taking Lexapro for anxiety.  I sought that out right after my diagnosis.  I have taken anxiety meds before so getting used to it was not a big deal for me.  It is helping a lot.  I also have Lunesta for sleep, otherwise I probably would not be getting any rest at all.

    I am feeling a little guilty today but I need to get over it.  I was scheduled yesterday for labs, chemo ed and a consultation with my oncologist.  During labs they were prepping me for chemo and nobody had told me I was going to start that day.  It was my first visit after surgery...I had no idea they were starting.  I had seen him the month before but I thought we would discuss the new pathology report and any possible changes to my treatment plan.  I kept my mouth shut until I saw the doctor but got quite uspet, and let him know I had a problem as soon as he walked in the room.  I got his attention and reasoned about my complaint.  He handled it well.  So, I'll start this Friday and my man will be there with me.  Onward ho.

    It annoys me how much I have had to assert myself with so many of these offices.  I am in Lincoln, NE, OK, so imagine that - ha!  It is nice here but just a tad isolated.  I visited three plastic surgeons beforehand and NONE of them had photos of implant reconstruction.  One had a portfolio showing his flap results only.  These are board certified surgeons who have been doing this for decades.  My jaw still falls to the floor when I think about it.  The attitude seemed to be that I was inconveniencing them by asking.  Actually, the Dr. I chose scrambled and found one recent photo he was able to show me.  Geeze Louise.  I didn't have time to mess with it.  I went with him.  He has a friendly, no nonsense style and he does the one-stage implant with AlloDerm.  I do like him.  He'll have to shape me a little later but I think I did make a good choice.  It all feels like a crap shoot sometimes.

    Holtbolt - I think if your surgeon is giving you med options, he really needs to explain to you why each is used and I agree with BerekelyKim; he should say which has the best record to combat reccurence for your type of cancer.  I would also go with Renrel's suggestion to contact someone at Dana Farber.  I had someone prescribe anxiety meds to me once and he asked me what I wanted and what dosage.  Well, if only I were a drug addict.  I was in some shock over that and in hindsight I wish I'd found another Dr. right away.   

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Thanks, guys, for all your input on the regimen.. I have another call into the onc (since he didn't return my call yesterday - strike two! lol).  Also, I am flying to Vegas on Monday... do I need this sleeve/gauntlet.. what is that?  If I need it, where do I get it?  How can I contact someone at Dana Farber for their input on my regimen?  Thanks!

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  • YearoftheHat
    YearoftheHat Member Posts: 243
    edited January 2009

    Holtbolt,

    I found this page on the Dana Farber site.  It looks like your doctor will have to request this for you, but it may be worthwhile since it can all be done on-line. 

    https://www.dana-farber.org/pat/becoming/partners/default.html

    Good luck!  

    Nancy (Year of the Hat)

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Hotbolt - Here is the web page for dana farber online consults

    www.dana-farber.org/pat/becoming/partners/default.html

    Do a search under "Partners online specialty consultations" to find the sited to get a second opinion on line from Mass General.  The site address is too hard to copy and for some reason I can not cut and paste into ths site.

     RekOz - Where are you on long island?  I grew up in Commack and my BIL lives Rocville Center.

    I am having a bad day. I am probably just too tired. I need more sleep, but I just feel somewhere between mad and sad today.  I need to get some things done but I just want to go back to sleep.  

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  • marlenet
    marlenet Member Posts: 345
    edited January 2009

    Hi. I am new to this as-well.  I start my 1st chemo the 13th. ( T & C ) I am scared to death... Heard so many horror stories. I had early stage ( gr 1, node- ,er + small tumor) My onco believes i will benefit from chemo. He said i will have a mild dose.  It still scares me!  i pray for all my sisters to recover and be cancer free.. I hope the drugs to help with s/e work!  any advice ?

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  • carlajane
    carlajane Member Posts: 23
    edited January 2009

    i've been reading these boards since october...have had login problems...hope i've figured it out...so...this is my test post...start chemo january 14! 

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    Hi carlajane welcome, sorry you had to be here.  glad you figured posting out.  i am starting chemo on jan 16, so i will have the weekend to recover and can still work..

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