March 2010 Chemo Start

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  • frosty1
    frosty1 Member Posts: 420
    edited June 2010

    I love Theo Chocolates!  They are here in Seattle and try to go local with their ingrediants.  They have a great tour.

    Biphosonates build bone density.  Think Boniva (Sally Field).  This study started a couple of years ago and I got in the last couple of days.  3 'arms' - the clodronate I'm taking, Zometa, which is an injection, and one other pill.  They are seeing results and hoping that it can keep bone mets at bay.

    Feeling crappy today.  NOt sure if it is the build up to #6, the funky liver function, or starting on clodronate.  Blah.

  • Charley
    Charley Member Posts: 255
    edited June 2010

    Ana - You are so good!  Did you find a website that had common foods that contain soy?  I just didn't even think of chocolate!  Eyes are too bad to read the small print of candy wrappers ...

    I have heard nothing about the potential of taking a bisphosphonate. Lisa - please post about what you onc says.  I am StageIIa as well but have one node involved ... my onc didn't even mention zometa.  Hmmm ... now I will need to look into this. 

    Frosty and Taty -- Yea! Congrats on finishing. 

    Hugs,

    Charlene

  • Kayne
    Kayne Member Posts: 103
    edited June 2010

    HI Everyone!!  I have been lurking but too cranky to post.  Three cheers! for those that have completed treatment.  So many milestones have been reached!  My heart goes out to any of you having trouble.  I don't think anyone (but maybe our families) truly understand what is involved with this, at least I never did, until now.

    Hereandnow:  Thanks for the boob wound pep talk but I lost my battle to my left expander last weekend.  I was hospitalized once again for fever with pain in left breast.  WBC was elevated to 18.5, put on antibiotics. Sat. pain and fever gone, WBC up to 25, which meant I was fighting an infection.  No outward signs of an infection, but they scheduled me for surgery on Monday morning to see what was going on.  By Sunday night I was in alot of pain in left breast so when she took me on Monday I didn't care what happened.  Unfortunately, she removed the left expander.  So I woke up to no boob and a drain again.  It can be put in after radiation is complete.  I feel like I will always be traveling to see my PS.  Of course my last AC was suppose to be Monday (postponed from last Monday due to liver enzymes)     Oh, and I also have fuzz on my head.  Some dark but alot very light, wondering if it is gray??  I have shaved it twice but decided to let it go and see what comes in. 

    PisceMoon:  So sorry to hear of your troubles and postponement of Chemo.  It's very frustrating when time stands still.  This is not the time you want to stand still.  But think how lousy you would feel if your body isn't ready for chemo.  I know it's upsetting,  I have never had a treatment on schedule yet.  The last time I just cried. 

    Well, I am looking ok for chemo on Monday.  Friday's blood work was ok.  Of course the visiting nurse, Oh, did I tell you I have to give myself IV antibiotics 3 times a day?  Just another chapter in this book.  Anyway, she was coming to change the access to my port so I thought great, she can draw blood from the port as I have too much scare tissue in my only usable arm and they haven't been able to find  a vein.  Well, she tried but couldn't get it out of my port. But she did get it out of my arm.  I am at the end of my rope and cried off and on all day, which is what I needed.  This whole TE thing has really depressed me.  And my girlfriend's daughter was graduating from HS on Friday.  My girlfriend passed away from pancreatic cancer in Jan.  So it was a very emotional week.  I am glad to say the graduation was beautiful and I didn't cry as much as I thought I would.  Monday's chemo will finally finish up my AC.  Keep your fingers crossed for me!

    Now see, I'm feeling better already.  Thanks for listening.

    Happy Father's Day to those great husbands of ours! 

    Hugs to All, Michelle  

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    Hi Kayne,. my heart goes out to you - what a load you've been carrying.  I hope now the TE is out you are at least more comfortable. Are the WBC's normalising?  My LFT's were a little off before the last taxotere but it didn't stop theminfusing , and a little anemic. I've got one more taxotere in 2 weeks. Been knocked around a bit more by this one - more hot flushing, more tired, and taste has been crap.

    Kayne, hugs to you, come here for a good unload whenever you need to, I know it's helped keep me sane, sometimes when I'm feeling a bit sad I come to BCO and find the silly pages like dumb things people say to you, just to get a lift up. I hope your treatments aren't held up anymore, then when they're taken care of, you can have the plan for reconstruction.

    Lisa

  • marilyn7
    marilyn7 Member Posts: 86
    edited June 2010

    Hi Everyone,

    I've been off-line for a week or so.  I'm in between #5 and #6 (last one!).  I'm doing fine, but the fatigue has been really difficult. I can't do stairs anymore and I'm always huffing and puffing.  My counts were a little low mid-cycle, but not enough to worry about.  I just want to get done with this phase!!!

     I saw the radiation oncologist yesterday. We had a very good rapport and long discussion about chemo vs. radiation and why the standard protocol is chemo, followed by radiation (micro vs. macro; systemic vs. local; morbidity of systemic, etc.)  I just needed a lay persons answer to WHY I have to do rads after my body has been under total assault from the chemo.  So, rads it is.

    I was hoping for a longer break between the two.  For some irrational reason I thought I would have 6 or 7 weeks to get back my strength.  When she told me she wanted me to start 3 weeks after #6, I actually starting crying. I'm just so tired and feel like I need a break.  This week I was at an evening event for work and had to leave because I was too tired to stand up.  I cried all the way home. I know I sound like a big baby, but I know this is the one place where I can actually BE a big baby.

    Anyway - It is really exciting to hear about those who are getting your hair back!!! Wow - I can't wait to get there.  I'm also sorry to hear about those of you having troubles - it is so unfair - it's bad enough we have this crappy diagnosis, at least let us get through the treatment without incident.

    Carol Sue - My 3rd treatment was just me and my daughter, although she is much older than your son, it still sucks to be a mom and not be able to be the one doing all the caregiving. 

    For those of you on rads - how's it going?  How real is the fatigue? At what point does / did the fatigue start?  I can't imagine being more tired than I am now.

    Hugs to everyone - Marilyn

    My cute story for the day - I asked my husband what he wanted to do for Father's Day, he said "just be a Dad", so I told him that meant he would be driving our daughter from Point A to Point B to Point C at the drop of a hat, while she cleaned out his wallet!!  With a teenager - that's about how it is these days.

  • Ana1973
    Ana1973 Member Posts: 88
    edited June 2010

    Good morning ladies!

    Kanye- I'm so sorry you have to endure so much. You are in my thoughts and will pray that the rest to your treatment goes without fail.

    Marilyn- I have completed my first week of rads. The rads onc did say I can expect the fatigue fairly quickly since I started rads 3 weeks after chemo. I am tired but I'm not sure if it's from the chemo or the rads. I haven't had any skin issues as of yet. I make sure to keep the area well moisturized. The only annoying part so far is the drive back and forth right in the middle of my day (2:15pm). I would really prefer it in the morning or late afternoon...but, it has to be done and I will be there without fail. 

    I think I have entered a new phase of treatment. It's the "freaking out" phase. What if it comes back?...does that pain mean it's spread?...my back hurts today, is that cancer? I don't know if I am being irrational and a hypochondriac or if my fears are legit. I may have brought some of this anxiety on myself. My step-dad gave me my Mom's cancer folder. It has everything from initial diagnosis to recurrence to the Onc telling her there is nothing more they could do. It will be 8 years at the end of this month since she passed away. I know we are 2 different people and times have changed in the last 8 to 10 years, but I can't help thinking that what happened to her is in my future. I am so scared.

    I am praying for peace of mind and good health for all of us. Sorry to be so heavy, but thanks for hearing me vent.

    Hugs, Ana

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    good morning brave march women,

    Ana, I understand how you feel, I am trying to find a way to deal with the aches and pains which I'm sure are part of the chemo and neulasta - today I woke with my thighs, hips, back, and shoulders hurting - I feel like an old woman - took 2 non steroidals and it's starting to settle. But there has been a little voice more present now, which asks is this something nasty? I've realisedthat I'm probably going to have this feeling for at least the next 10 years, so I'd better find a way to deal with it, but the reality of what we have been dealing with, this nasty bolt out of the blue, is settling in. I have had a little right upper abdo pain since before diagnosis - so when chemos finished, I'm going to get a full abdominal ultrasound and check out the gall bladder/liver plus ovaries and uterus. I've also asked for a baseline DEXA scan for bone density.  I still have a follow up CT chest to have to check a little "shadow" from my original screening CT. My meds after chemo at this point I'm thinking will be tamoxifen, aspirin, vit D/calcium, a bisphosphonate, and maybe effexor, if the hot flashes keep up.

    I can't wait for the spring, hope everyone who's finished is enjoying being / returning to somewhat normal, and all still treading the treatment boards has a good day,

    Thinking of you all,

    Lisa

  • Charley
    Charley Member Posts: 255
    edited June 2010

    Kayne - I'm sorry you are having all this trouble!  Sounds like you just needed a good cry over alot of things.  It's hard to lose a friend ... very emotional time for you!

    Ana - I'm sorry about your mom.  My mom died a long time ago from BC. (36 yrs this July 4th) I wish I knew more about her diagnosis and medical history.  My dad passed away 8 years ago so I don't really have anyone to ask and of course, he saved nothing. I know the feeling that her life is your future.  I worried and worried for years over suffering the same fate as my mom, finally tested negative for the gene and then 10 years later (when I was in the best physical shape I have ever been in) I was diagnosed with breast cancer. What the heck?? What else could I have done? Unfortunately "worry" did not stop it from happening ... I'm scared.  But I'm focusing on today.  I feel good and I feel happy.  What can be better than that?

    Hang in there fellow Marchers!

    Hugs, Charley

  • badger
    badger Member Posts: 34,614
    edited June 2010

    Hey all - finally turned the corner to OK after final tx last week.  Am still fatigued and have a tinny-tasting mouth but I am hanging in there with everyone else.  Hope (we all get) to feel good again soon.

    Onc. nurses brought out a cupcake with a candle and sang happy last chemo to you, to the tune of happy birthday to you.  I think it makes them happy when someone is done, and onc. nurses are some of the most upbeat people I've ever met, especially when gifted with homemade chocolate chip cookies!

    I'm off to get ready for work, hope everyone has a good day.  {{hugs}}

  • staceyt
    staceyt Member Posts: 106
    edited June 2010

    Good Morning All,

    My thoughts and prayers are w/ all who are having a rough time.

    I'm having a tough time myself, my last chemo was May 4th and I kept my eyebrows and lashes through the whole process.  I looked into the mirror yesterday and I now have 1 eyebrow and have lost my lower eyelashes.  Boy did I have a break down, I thought I was through the worst of this but apparently not.  Someone told me that my follicles in my brows and lashes were already dead so when the new ones started to grow it pushed out what was there - does that make sense?  I don't know, I think washing my face everyday would have wiped away the dead ones.  Oh well it's done and over with and I can't change it, I guess I just needed to rant to the women who know exactly what I am going through and will not judge me and when you tell me it will be alright I know it's true because you've been in my shoes !

    On a good note, my rads are going well (I've probably just jinx myself) 5 weeks into them and just a little pink, my cornstarch bottle is never far from my side.  

    Thank you for letting me rant.  Hope you all have a great day - Hugs and prayers to all - Stacey

  • marilyn7
    marilyn7 Member Posts: 86
    edited June 2010

    Stacey - I totally understand how you feel. I think the issue is that all work so hard to maintain normalcy, including keeping our emotions in check, so when these things happen, the tears, anger, frustration all come back to the surface.  Rant all you want!  That is good news on the rads. I don't start until mid July but I'm anxious that I'm going to be a walking lobster from the burn. 

    Badger - CONGRATS!!!!!!! Agree - my onc nurses have been  fabulous.

    I'm I the last one hanging out here??  My last TAC is on Monday - 6/28.  Anybody else left?

    Marilyn 

  • Yeshua4Me
    Yeshua4Me Member Posts: 77
    edited June 2010

    Marilyn: No, you're not the last one. I don't finish chemo until August 16th.

  • frosty1
    frosty1 Member Posts: 420
    edited June 2010

    I too am finally crawling out of the deep dark pit I fell into after my very last chemo.  Geez.  This was bad.  No need for details, but I'm glad it's over.  My nails don't hurt like they did last time, altho I still have the red splotches under them all.  Now I just have a nasty cold that turned into a dry cough.  Fun.  Start Herceptin on July 7.  I'll be glad to get that first one done so I know how I'm reacting.  Cheers to all!

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    My last chemo is the 5th of July - so you're not here alone Marilyn and yeshua and Frosty and Charley and Ana, and everyone else who's peeking in but not posting much. I intend to keep posting until everyone of us has finished - and then we should all have a celebratory raising of the glass that we've made it through this stage.

    One lesson I have only just learnt is not to fall asleep through my taxotere like last time. The first one I sipped ice chips constantly, and although my taste and mouth were a bit yuck for 3 or 4 days, it was doable. This time, as I'm snoring through under the influence of antihistamine and harp music on the Iphone - the taxotere took out my taste buds. I feel like I have been eating globs of fat for the past week, and it's bloody revolting! For my last one, I'm going to take the nurses some brownies, I'm going to be really perky, and suck that damn ice, and wear my ice mittens.

    Good luck to all,

    Lisa

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    and Stacy, and badger, and Kayne :)

  • badger
    badger Member Posts: 34,614
    edited June 2010

    I'll hang in there with everyone and raise a glass or slice into a cake when we're done.

    Stacey, I can relate - I've no lower lashes and the top row is thinning as are my eyebrows.  I've read in another chemo month thread that they'll probably all fall out after the last tx but should start to grow back right away.  So I'm expecting that but will surely hate it, too.

    Lisa, I sucked ice chips all six treatments during both the taxotere and the cytoxan, I wasn't sure which was the potential culprit so did both (boy was I cold by the time the time infusions were done) and I think it helped.  Tinny taste but taste, I've been able to eat and no mouth sores.

    Frosty, thanks for posting the new pic, you remind me of me!  Hot pink RFC Survivor shirt, and a fuzzy pale head from not seeing the sun in *what* our entire adult lives?

    {{hugs}} to all my other sisters & brothers (hi Les in Indy) Marching thru chemo.

  • Charley
    Charley Member Posts: 255
    edited June 2010

    Hi Marchers!

    I'm with you guys until you are done as well! And will raise a glass of wine or slice of cake ... or both! Although my chemo is over, I still look like a chemo patient.  No hair, sparse eyebrows and thin eyelashes.  I spent $80 at the salon this weekend on Nioxin products in hopes that it will help the hairs on my head start growing!! They are stubborn.

    A bit of numbness in my hands occurs occassionally ... I'm thinking these darned tissue expanders are cutting off the circulation in my arms.  Thankfully I go to the PS next week to get this last surgery scheduled.

    Hugs to all!

    Charley

  • Ana1973
    Ana1973 Member Posts: 88
    edited June 2010

    I would never leave my Marcher sisters! Until the end...all of us! I don't much care for wine, but I will toast to all of us with a shot of vodka :)

    Charley- I got the Nioxin also...I started using it about 3 weeks ago...I have to say my hair is coming in nicely. Granted it's only about 1/8" long (my hubby shaved my head to even everything out) but there's no bare spots, so it looks promising. My head feels kinda like velvet...lol.

    Rads is going well. I've only had 8 out of 35 so far, but no skin issues and I continue to pray for no issues.

    I am praying for all of my March sisters still dealing with chemo and it's nasty SE. Much love to you all.

  • LillyC
    LillyC Member Posts: 64
    edited June 2010

    Hi Everyone!  Haven't posted recently, but have been keeping up with all.  I had my portacath taken out last Tuesday - a real milestone!  

    And started radiation on Wednesday.  So far so good with the radiation.  My doctor suggested using Cetaphil lotion, but didn't say anything about cornstarch.  Staceyt - Do you use lotion also, or just the cornstarch? I really want to keep burning at bay.  Also, am at a loss of words for the eyebrow and eyelashes.  I, too, thought we were beyond chemo side effects.  I finished my chemo on the 19th of May.  I'll let you know if my eyebrows and lashes remain. My head feels fuzzy with hair, but very, very short.

    Love to all!!! 

  • Taty98328
    Taty98328 Member Posts: 27
    edited June 2010

    Hi Everyone! Today I start to fill more normal, no bonepain from Neulasta, yesterday  a was lake 80 y.o lady. I just looked on Nioxin products and can`t choose which one I should buy? Is anyone can help me? I never had thick hair but I`m affraid to have bold spots (my mom had them after chemo). Much love to you all.

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    Hi Marchers,

    as my hair starts to sprout, my eyebrows and eyelashes are thinning out, and it's amazing the difference it makes. I'm going to have to learn how to use an eyebrow pencil ala the look good feel better class from forever ago :)   I'll post a replacement avatar for a few days to show my fluffy head  -  I don't know how to post them into the message without opening some internet photo account. Taty, I'm glad your pain has settled, it's really disturbing to feel like you've been aged with the aches hey? Talk about getting lots of insights from this trip (I too am a health worker), which will certainly be carried into my future relationships with patients.

    Hugs to all,

    Lisa

  • staceyt
    staceyt Member Posts: 106
    edited June 2010

    Good Morning All,

    LillyC - I use only cornstarch - I am faired skinned and burn easily in the sun and was told by my rads nurse that this is not how the skin reacts for radiation.  Everyone is different even those women that tan in the sun may end up very burned and blistered (sorry if this is to much info). The cornstarch seems to work for me and I have today & tomorrow then next week I start my boost week and then finished.  My breast has held up to this point w/pinkness and more red near my armpit and under my breast, over all doing ok.

    I, like many of you, am starting to wonder where do I go from here - this has been such a hugh part of my everyday living that I'm not sure what to do after.  I plan on keeping up with this website and trying to stay in touch with my fellow Marchers (for those of you that will be here) as you have become like family!  The other is that I am saving my pennies to go a cruise to celebrate life, being Cancer free and to Thank my husband for his undying love and support through all of this crap.

    My best to all I continue to pray for ALL of US everyday- Stacey

  • Ana1973
    Ana1973 Member Posts: 88
    edited June 2010

    Taty- I went with #4 on the Nioxin based on the recommendation of my stylist. It's working well so far. Good luck!

    LillyC- How was the procedure for getting the port out? I need mine taken out too, but am a little scared. As for rads...I have a truck load of different lotion...lol. I got 100% aloe, miaderm, the Dr gave me RadiaGel, and got Aquaphor as part of my LGFB class.

    StaceyT-What a great idea, taking a cruise. I would love to do that for my husband and myself. After all the hell we have been through, it would be great to reward ourselves with a relaxing vacation. Alas, for me, I have to go back to work :(. We have been scrapping by our DH paycheck. I'm sure for him it would be a bigger reward to have some help with the bills. I hate my job and loath the idea of going back.

    Ok ladies, have a wonderful day if possible!

    Ana

  • staceyt
    staceyt Member Posts: 106
    edited June 2010

    Ana-

    I'm not planning on going until next year - April May time frame -  it will take me that long to pinch my pennies Smile

    Stacey

  • LillyC
    LillyC Member Posts: 64
    edited June 2010

    Ana1973 - The removal of the port was so easy.  I, too, was scared, particularly when I found out that it was going to be done with just local anesthesia.  I felt a sting for about ten seconds and nothing other than pressure after that.  The whole procedure took about fifteen minutes once in the operating room. No pain afterwards either!  It really is nothing to worry about. 

  • Charley
    Charley Member Posts: 255
    edited June 2010

    Lisa - I am using the eyebrow pencil from the LGFB class.  Never had to use one before but now, it's essential! I am so jealous of your hair.  AArgh!  I wish mine would hurry up and grow! I'm afraid ... my brother has total alopecia ...totally lost all his hair about 5 years ago ... eyebrows, eyelashes, everything!  Hopefully mine will come back! It's been 6 weeks and very little! :(

     I'm using latisse on the eyelashes and have noticed tiny little sprouts ...

    I'm planning on getting my port out when I have my exchange.  I've been told it is very monor.  Totally different from  getting it put in!!

    (((hugs)))

    Charley

  • PiscesMoon
    PiscesMoon Member Posts: 206
    edited June 2010

    hello fellow marchers

    tuesday i finally received chemo #5 and yesterday my shot and today i'm gimping around like an old woman.  i won't miss this when it's over that's for sure.  trying to keep myself busy at home has definately been a challenge.  i'm looking at this like a dress rehearsal for when i retire and i've found out that i need to get some serious hobbies!  or just not retire at all.

    hope everyone has a great week.  :-)

    ~M

  • marilyn7
    marilyn7 Member Posts: 86
    edited June 2010

    Lilly - congrats on getting your port out.  I have a love-hate relationship with the darn thing.  I can't imagine going through this without the port, but I am in constant fear that something is going to go wrong (not to mention that it caused my blood clot).  Also good to hear it doesn't hurt to get it out. Having it put in was way more traumatic than I anticipated.

     My big issue now is edema.  My feet look like fat little dough balls and my arms are about to explode.  

     I also had a major bout with ANGER last night. It was the first time that I felt angry about how unfair this whole thing is.  I was so angry I felt like really lashing out and destroying something.  I wanted to SCREAM!!!!!  But it passed and feel much better today. 

    I'm just watching the clock tick until Monday morning - #6.

    Hang in there - stay cool (it was 100 degrees in DC today).

     Marilyn 

  • badger
    badger Member Posts: 34,614
    edited June 2010

    Edema - yikes me too, fat feet and cankles (calf + ankle appear to have merged)

    So avoid salt, caffeine & inertia...drink water, walk, and elevate the feet

    WHAT ELSE?

  • hereandnow
    hereandnow Member Posts: 322
    edited June 2010

    Hi girls,

    I just did my first full days work, and it went really well. I had 12 weeks paid sick leave from my scholarship, and feel very lucky to have been able to stay at home. Re the ankles - I wear hospital anti-embolic stockings (TED stockings) for the day and week following chemo, because of all the fluid shifts that happen. It really helps, and I haven't developed cankles :)  so maybe give them a try.

    I've just had some bad news from my Mum who lives 1000miles away from me. She was going to come down for my last chemo, then she's had a yearly mammogram on Wednesday, core biopsy of a small lesion, and diagnosed today with Invasive ductal carcinoma.  She's being all matter of fact about it, but I know she's in shock. I'm going to fly up to be with her next week, but will have to come home for my last chemo.  So now with my Grandmother at 84, my mother at 68, and me at 43, I'd say we have a pretty positive family history - it will be interesting to get the BRCA results that's for sure.

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