Starting Chemo in April 2014

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  • EverForward
    EverForward Member Posts: 242
    edited July 2014

    Timbuktu, I had the same worry when some of the hair on my head didn't fall out and kept growing. It's not supposed to be doing that! What does that say about any fast growing cancer cells that might be floating around? Oh the mind games we torture ourselves with!

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  • Swissmiss
    Swissmiss Member Posts: 111
    edited July 2014

    My nails are growing faster and stronger than ever...and I've had the same sinking feeling that if my nails can survive chemo, then other evil, fast-growing cells can persevere too :(  And because my original MO never ordered a PET scan or bone scan, I can convince myself those cancer cells are everywhere, undetected.  This really is hard on us...not just the physical toll, but these mind games.  

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited July 2014

    Thanks Brig!  LOL You are talking to a world class worrier!

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  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited July 2014

    Timbuktu - Guinness Book of World Records kind?


     

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  • chknfeet
    chknfeet Member Posts: 29
    edited July 2014

    Hi Ladies!  I finished my 4 TC a week ago July 2.  I am already feeling the anxiety....  My MO is not recommending any scans and take a wait and see approach.  I start tamoxifen in 3 weeks.  I have not lost all my hair.  I had a 1/8 buzz and still have stubbles.  It seems as though my hair growth STOPPED but I did not shed hair after my 1st round.  My nails are also still growing.  I have had very little bothersome side effects rounds 2-4.  I've only had taste changes and minor aches and pains.  This worries me greatly even though I should be grateful.  UGH!

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  • jhodro
    jhodro Member Posts: 240
    edited July 2014

    Brigadoon: I was having RLS badly too and started taking Magnesium with 'dinner' and as long as i'm consistent with it, it does seem to really help. It's the worst. Ask you MO about it, maybe?

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  • Footballnut
    Footballnut Member Posts: 742
    edited July 2014

    Hi All!

    I love my MO!!!!!  Here is my update;

    Today at 8:15 I was at the hospital for my appointment with my MO and his Nurse - Angel #2.  I was in such pain this morning having woken up at 2:30 in the morning for yet more diarreah which has just about ripped me open and left me with a burning stomach and more pain elsewhere.

    In walks the Dr.  I start to cry and he hugs me.  I open my diary and tell him the hell that I have been going through - trying not to cry.... I felt like a little girl talking to my dad.  I told him everything.  The aches, the pains, the constipation, the diarreah, the minimal eating and drinking, the percocets.  Upon review, the pains really kicked in last Friday night.  I told him that I had lost 5 pounds since Saturday and that last night my temperature spiked to 100.4 for approx 2 hours last night.  He listened to everything - did a physical exam;  asked a few questions.  My hubby said that the Nurse had tears in her eyes.

    He explained that my body was reacting negatively to taxotere.  He explained that he would have me feeling like myself again very soon.  I even asked him if I was going to die.  He said absolutely not.  I was sent upstairs to the chemo area with an order for an IV.  When I got to reception, I lost it and just started crying.  I was in so much pain. A Nurse held me for atleast 10 minutes, then rocked me and hummed to me.  Then I cried even more because it made me feel like a little girl with my mom.  

    Once they calmed me down, they took me to a stretcher, gave me warm blankets and I was put on a 3 hour IV of fluids, a bit of morphine and zantac.  They also took some blood.  I slept a bit, ate a bit and was told that I would also get Home Care for the next 3 days so my port was left active.  My hubby wanted to stay with me but I sent him to work.  My girlfriend picked me up and we went out to eat.  TO EAT!!!!!  I felt approx 80% by that time - I had half a veggie omlette with some potatoes and white toast with strawberry jam, apple juice, water with lemon and a green t.  That was at 2:00 and I haven't run to the bathroom yet!!!!!!!!  I was told that I should take a percocet every 6 hours and that I should be at 100% before the end of the weekend.

    A week from this Tuesday, I will meet with my Onc to discuss how my last 2 chemos will be managed.  At this point, he anticipates that I will be given taxotere weekly with the herceptin still being every 3 weeks.  Weekly!  Ugh!!!!!

    The Nurses were awesome, my Onc was awesome - I can't believe how much better I feel in such a short period of time.  I swear to you that I was ready to die.  I couldn't take anymore agony!  

    Now I look back and say why did I wait so long?  My answer - I always thought that tomorrow would be better - that I had to endure a few days of hell.  I would wake up feeling a bit better then get kicked in the teeth later in the day.  Plus I dreaded the possibility of having to have an active port and to be hooked up to an IV.  Well, it happened anyways!!

    Thank-you to all for holding my hand, giving me hugs and for sharing your kind words and sentiments.  I might not be completely out of the woods yet, but am getting there!!!!!

    Thank-you all!!!!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited July 2014

    Oh football!  I'm so happy you are feeling better and that you have good medical team.

    What a horror!  It's hard to gauge, isn't it?  There's misery, more misery and the most misery.

    How do you know what's normal and what's not?  What will he do about the Taxotere reaction?

    But thank God you got help!

    Can't wait for this ordeal to be over for all of us!!!!

    Just wondering, how many infusions of taxol/carboplatin is everybody getting?

    3? 4? 6?  It seems to vary so much.

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  • SharonDe
    SharonDe Member Posts: 222
    edited July 2014

    footballnut - heartwarming to read the relief in your "voice."  So glad you got some relief today.  Please don't hesitate to call them if you need more help later!

    Chknfeet-  Sounds like you are a week behind me with very similar SEs, or lack of them in some cases.  Each of us reacts differently to chemo, and there is research out there that says there is no correlation between harshness of Side Effects and effectiveness of chemo.  Since we can't immediately test to see how effective chemo was, all we can do is have faith it worked.  

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  • nancybel
    nancybel Member Posts: 81
    edited July 2014

    Chknfeet and Sharon, this sounds just like my journey. I get my last TC tx on Monday, and hopefully the SE will continue to be minimal. The most SE I've had are the yucky/white mouth, temp loss of tastebuds, and I did get hives after tx 2 and 3, but got under control with Prednisone.  I lost most of my hair after round 1, but still have some and it has stopped falling out.  eyebrows and lashes have thinned, but nails have continued to grow. Sharon thank you for posting that there is no correlation btwn harshness of SE and effectiveness of chemo, because I was really starting to worry.  I have just learned that I will not be needing radiation, which is great to hear, but still wonder if I've done enough. Oh well, I will continue to have faith that I have done everything I can and that God will take care of me.

    Football: So glad you are feeling so much better.  I've been worried about you.  

    Hope everyone is having a great day w/minimal SE.

    Nancy

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  • EverForward
    EverForward Member Posts: 242
    edited July 2014

    football, your post brought tears to my eyes. So glad to hear you're finally getting some relief.

    Timbuktu, I get Taxotere/Carboplatin every three weeks for six rounds.

    Today I had lunch with a good friend I worked with in Afghanistan. It was so great to see her and I haven't laughed that much in a while. That really lifted my spirits.

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited July 2014

    footballnut, I had tears reading your post.  So glad you are doing better, and we can hear the hope and resemblance of the Footballnut we adore!

    Please check with your MO on whether you must stay on Taxotere or if you can move to weekly taxol.  Believe me, there is a huge difference in SEs.  I couldn't handle Taxotere and was in the hospital for 4 days on IV with neupogen shots daily, terrible D and much of what you describe.  Moved to AC for 3 rounds which sounds horrible but much Better than. Nasty T.  Weekly taxol is a breeze in comparison, at least so far.  Don't suffer!

    We luv you!

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  • chknfeet
    chknfeet Member Posts: 29
    edited July 2014

    Sharon - Thanks for the reassurance.  Its crazy the things that fly through my head sometimes.  Today my back side feels tight, like I've been working out.  Not sure what is going on since its been over a week and sure SE have not started again.  Its doesn't help when a coworker tells me to make sure I'm not on a clinical trial and getting placebo since I look perfectly fine.  Seriously, some said that to me.

    Nancy - I've had the yucky white mouth and crazy tastebuds as well.  I am itchy all over today but not sure if that's from stress.  I tend to break out in hives when I have anxiety.  I haven't had any allergic reactions since starting so thinking its stress.

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  • lilyrose53
    lilyrose53 Member Posts: 216
    edited July 2014

    Footballnut - I am SO glad you are finally feeling better!  Please don't ever wait so long again if you are feeling bad!  Must have been nice to eat again!!!!  Please take good care of yourself.

    SwissMiss - Please don't worry!  How much your nails grow has nothing to do with how effective your chemo is.  I know because I asked my onc nurses about it.  They chuckled and said they have heard that question hundreds of times!  Think positive!  

    Wishing you all a good night!  Hugs, lilyrose

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  • MomMom
    MomMom Member Posts: 523
    edited July 2014

    Footballnut,  What a relief to get such loving care.  You deserved every bit of it girl!!  Yes, you need to get your MO's plan for the next go round so you never have to suffer like that again.  Huge gentle hugs.

    Paula

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    this has got me nuts... Eyelashes growing on right eye only!  This just looks silly.   Anyone else with such cosmetic afflictions?

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited July 2014

    FBN - so glad you are feeling better!

    Swissmiss - I am on DD Taxol - have had 2 of 4 treatments so far. This is after 4 DD A/C.  I shaved my head on day 16 of A/C. Never lost all of the stubble and now it feels like I have more stubble .. In some places it feels slightly longer and in other places it feels like new stubble.  The nurse said it is possible, but that I might lose this again.  

    So far I still have my eyebrows, but my eyelashes look thinner. 

    My fingernails were GREAT on A/C.  They don't feel as strong on Taxol but they aren't discolored (yet?). However I can "feel" the tips of my fingers and my fingernails when I type.  Not numb, no tingling, but aware of them

    Off for bloodwork this morning. My hemoglobin has been going down one point very week since my blood transfusion last month. Down to 8.5 on Tuesday which explains why I felt so tired all weekend! If it is still on the downward trend today, I will get another transfusion on Monday so that I can continue with chemo on Tuesday.  

    Only 2 more treatments ... Only 2 more treatments ..... Only 2 more treatments ... 

    I just keep telling myself that so that I can get through this! :-)

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  • Mompv
    Mompv Member Posts: 110
    edited July 2014

    Footballnut I am so glad you are feeling better! 

    I still have my eyebrows but grow stubble on my head which is now falling out . Legs and armpits still smooth yay!!!

    I had round 3 of AC yesterday! I asked my MO about my spacey and tiredness I get for 6 days! All I want to do is lay down which is not good at work . I am going in late today so I can nap before a bit. I don't have to worry about bed head though!!!! Just fix my make up and do....

    Funny story yesterday. I dad forgotten for the moment I wasn't wearing a host or scarf and answered the door to the UPS guy! Poor thing did a double take! He must have gotten quite the shock!!! I suppose that woke him up!!!! And gave him a story to tell!!! Lol I just don't hope I don't do that at work if the guys need help at work in the parts and accessories store!!! I take if off sometimes in my office to scratch  my stubble!

    For the icky mouth nurses have told me a few hints:

    Use arm and hammer with baking soda sensitive brand. Biotine rinses a few times a day. Oh brush your tongue! Use plastic utensils to eat and add a bit if lemon to water ( I heard that here too).

    Well here is to less SE for everyone I will raise my glass of pomogrante juice to all!!!!!

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited July 2014

    I wear a dorky hat.  The other day a woman looked me right in the eye and said "How are you doing?"  She knew.  It surprised me, it made me feel good.  Someone understood and reached out in kindness and concern.  Its really like being in a club that no one wants to join.  I think I'm coming to terms with it because I'm not embarrassed anymore.  Once I can accept it, I don't care about others reactions so much.

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  • Footballnut
    Footballnut Member Posts: 742
    edited July 2014

    Hi All,

    Friday's update -

    Homecare called shortly after 9.  A package of supplies will be delivered to my home prior to 1:30 today hopefully.  Then a Nurse will come and hook me up to an IV for 4-6 hours so that I can get more fluids.  She will return and un-hook me tonight.  This will continue for Saturday and Sunday at which point my Port will be de-accessed and I can take a shower again!!!!!  :-)

    Today I feel about 80%.  Still some lingering discomfort but nothing like it was.  I ate dinner last night - chicken and coleslaw! mmmmm  Coleslaw!!!  I ate breakfast this morning - I want to eat!  My tummy is still not 100% and is still loose but I am feeling so much more like myself albeit tired.

    It is so true - how do you know what is a "normal" reaction until you have experienced it yourself?  I have had pain and discomfort my whole life in my hips and lower back.  I just kept plowing on.  Yesterday, the Nurse explained that I must stay ahead of the pain.  I should take the meds.  My problem was that I didn't even try percocets until Monday morning at 3:30am.  Up until that point I thought that extra strength tylenol would be enough.  I just hate the thought of popping pills and have to get over that.  In my worst dreams I never thought that things would progress to the point that they did.  

    I never even thought that the burning tummy could be reflux.  I have a mild case of reflux that flares up every so often and pop a prevacid for a week.  Then I'm all good.  When I chatted with hte nurse about the Dr giving me zantac, she explained that the burning was reflux.  I always thing of reflux as acid backing up into the throat and forget that this includes acid burning in the stomach as well.  She suggested that I pop a prevacid every day and that this well help prevent this from happening.  I never even thought to ask about this or discuss with my Onc.  All things that you learn.

    What I truly love about my medical team is the kindness, empathy and support that I am getting.  Not once did anyone point fingers or make me feel like I had brought this on myself.  Even when I said that I was stupid to ignore this like I had, they jumped in and disputed my way of thinking.  We all know that there are some very poor bed side manners out there so I am thankful.

    I have complete trust and faith in all of them - especially my Oncologist who leads the charge.  His hug meant the world to me.  I will discuss the go-forward plan a week Tuesday. A nurse explained to me that unfortunately, others have gone through what I did and explained why it is so important to raise concerns early.  I did contact my MO's nurse Monday and she suggested an IV based on my feedback.  I turned it down thinking again that "tomorrow would be better".  

    Plus I didn't want to be a bother to anyone.  I didn't want my hubby to have to take time off of work.  As it stands, he ended up coming home from work Monday to be with me and took me to the Dr yesterday.  I worried him sick with my pain and crying so really did nothing good for anyone.

    Hindsight is always 20/20.

    So, now I just feel tired.  Still have some pain in my tummy but now I'm on the side of healing.

    Two more treatments!!!  Can't wait for the football season to start because then my chemo is behind me and I can focus on better things!

    I propose again that a get-together must happen once we are all done our treatments.  I'm definately in!!!!!

    Love you all!!!!

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  • Swissmiss
    Swissmiss Member Posts: 111
    edited July 2014

    footballnut...so glad to hear you are being taken care of.  I agree, it's hard to feel like you're constantly taking pills; but this is temporary, we will all get through this together. 

    Lemonade...i actually still have a very thin head of white blonde hair that never fell out after I clipped my hair after round 2 of AC.  I wouldn't have called it hair, but maybe if it was darker it could :) My mom says this is the same head of hair I was born with...LOL! I guess I'll start fresh like a newborn babe after my last infusion :)

    Jbokland...I definitely have more eyelashes and eyebrows on my left side. I think it's because I sleep pretty much on my right side all the time. But I have unfortunate whitish blonde lashes and brows, so I don't really notice it.

    Lily rose...I think I'll just try to be thankful for the strong nails and not assume it means the chemo isn't working.  Thank you for the reminder :)

    Thank you everyone for sharing your journey.  This forum is such a blessing for me...I am never alone :) I have my last chemo this coming Wednesday.  I'm excited and way too anxious to get this over with!  My sister is insisting I do the customary sign-holding photo to commemorate the event...I have simply avoided getting in front of a camera since I lost my hair, so we will see about that.  I'll post here if I actually do it :)

    xoxo

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  • Mompv
    Mompv Member Posts: 110
    edited July 2014

    Glad to see Footballnut is on the mend. I guess this is a lesson to all of us to not ignore anything. I was told to call over ANYTHING even if we think we can handle it. They take care of a lot of people and have see and heard everything. Although I was disappointed after my MO visit yesterday (after an 1 1/2 wait) that he had no answers for my overly spacey and tiredness I experienced last time. 

    I went ahead and  am working only 1/2 day today, came in at noon working til 4:30, so amazingly enough I slept til 7am, I am usually up at 5am. I feel better today than I did this time after the last infusion. I am monitoring the nausea. I took the steriods but not the prochor...something. I did take an ativan last night and they gave me one in the infusion room. I have been watching my fluid intake as well, I wonder if last time I didn't drink enough or sleep enough. 

    Anyway, funny story...

    Yesterday morning, I was just puttering around the house bald...and the bell rang, it was UPS. Poor guy did a double take. I bet I woke him up!!! Oh well this is life. 

    Tomorrow is Neulasta early..first in first out is the name of the game there. It is a very very busy place. I go the Roswell Cancer Institute here  in Buffalo, NY. They are the best in the area which why we wait.

    I have my last AC on July 24th then onto Taxol for 4 rounds every 2 weeks was the initial plan, we shall see.  Estimated finish date is Sept 18th.  I am gonna take cake and ballons to the infusion room.  The nurses are fantastic. It seems you all go weekly for 12 weeks. Then onto radiation everyday for 5 weeks...yikes!!!!

    May you all have lighter SE's hang in there....this boat will pull into the wellness harbor soon. Then let the party of our lives begin. It does shift your priorities in life. I am pondering them now...

    First on my list is to do more fun things with my wonderful  husband.  He even takes the time when we are in the infusion room to go visit people who are there alone! !!! He has been wonderful through all of this: laundry, I wash he take to laundry mat to dry, yep our dryer broke can't afford to replace yet with those pesky medical bills looming over our head. He cooks every meal...but he is the better cook, my thing is baking.

    2nd would be my girls, when they have time in their busy lives.

    Work on my children's books I have going. Doesn't show here but I love writing stories for children, I have many in progress. I want to work on them now while I have a lot of sit time, but my brain does not cooperate...it seems to be bouncing down the freeway somewhere wanting a vacation...maybe on a beach...salt air, wave crashing...ahhhhhh the relaxation dream......

    Ok gone on to long..back to work!!!!!

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  • Mompv
    Mompv Member Posts: 110
    edited July 2014

    Glad to see Footballnut is on the mend. I guess this is a lesson to all of us to not ignore anything. I was told to call over ANYTHING even if we think we can handle it. They take care of a lot of people and have see and heard everything. Although I was disappointed after my MO visit yesterday (after an 1 1/2 wait) that he had no answers for my overly spacey and tiredness I experienced last time. 

    I went ahead and  am working only 1/2 day today, came in at noon working til 4:30, so amazingly enough I slept til 7am, I am usually up at 5am. I feel better today than I did this time after the last infusion. I am monitoring the nausea. I took the steriods but not the prochor...something. I did take an ativan last night and they gave me one in the infusion room. I have been watching my fluid intake as well, I wonder if last time I didn't drink enough or sleep enough. 

    Anyway, funny story...

    Yesterday morning, I was just puttering around the house bald...and the bell rang, it was UPS. Poor guy did a double take. I bet I woke him up!!! Oh well this is life. 

    Tomorrow is Neulasta early..first in first out is the name of the game there. It is a very very busy place. I go the Roswell Cancer Institute here  in Buffalo, NY. They are the best in the area which why we wait.

    I have my last AC on July 24th then onto Taxol for 4 rounds every 2 weeks was the initial plan, we shall see.  Estimated finish date is Sept 18th.  I am gonna take cake and ballons to the infusion room.  The nurses are fantastic. It seems you all go weekly for 12 weeks. Then onto radiation everyday for 5 weeks...yikes!!!!

    May you all have lighter SE's hang in there....this boat will pull into the wellness harbor soon. Then let the party of our lives begin. It does shift your priorities in life. I am pondering them now...

    First on my list is to do more fun things with my wonderful  husband.  He even takes the time when we are in the infusion room to go visit people who are there alone! !!! He has been wonderful through all of this: laundry, I wash he take to laundry mat to dry, yep our dryer broke can't afford to replace yet with those pesky medical bills looming over our head. He cooks every meal...but he is the better cook, my thing is baking.

    2nd would be my girls, when they have time in their busy lives.

    Work on my children's books I have going. Doesn't show here but I love writing stories for children, I have many in progress. I want to work on them now while I have a lot of sit time, but my brain does not cooperate...it seems to be bouncing down the freeway somewhere wanting a vacation...maybe on a beach...salt air, wave crashing...ahhhhhh the relaxation dream......

    Ok gone on to long..back to work!!!!!

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  • jhodro
    jhodro Member Posts: 240
    edited July 2014

    Two more treatments…two more treatments…two more treatments…

    This is my mantra. It's Friday, I had Taxol #10 on Tuesday. I'm finally getting out of the big D. 

    Football: so glad you have faith in your med team, it's so helpful. Super glad you're feeling better.

    Swiss: I have fast growing nails on this, but hair not so much. 

    Jbokland: My eyelashes and eyebrows all bit the dust last week after a slow fade. I have more lashes on the left than right, but have given up with any type of mascara since it looks ridiculous. :)

    Mompv: On vacation (we were on a cruise) I got about 2/3rds down the long hallway before I realized that I forgot anything for my head. And our cabin steward saw me many times without the hat and on the last day - he said you look great with our without anything on your head! He was so sweet!!

    My 7 y/o son's day camp counselors asked him today if his grandma was picking him up again. I went there a couple times with just a scarf, a couple of times with a wig. I guess that is too much to comprehend for some. He said no, it's just my MOM. I can't decide how offended to be. I guess I could be his grandma since I'm 43? UGH!!!

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    jhodro- yowch!  Hate it when that happens!  Slap that counselor!

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  • MakeLemonade
    MakeLemonade Member Posts: 153
    edited July 2014

    hemoglobin went from 8.5 to 8.8 so no blood transfusion!  I hope it continues to go up because I am so tired when it is this low!

    Decided to do some clothes shopping and run some errands after the blood draw ... Well, got that done and then slept the rest of the afternoon.  So tired of being so tired! :-)

    Have a great weekend everyone ... 

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  • SharonDe
    SharonDe Member Posts: 222
    edited July 2014

    Good News about no transfusion, MakeLemonade.

    Jhodro - those silly counselers.  But, if I showed up bald to pick him up, they would have asked him if Grandpa was coming ...

    Mompv - sounds like your husband is a very nice guy.  Mine does all the cooking too - even before all this started.

    Wondering how LovebeingNana is doing?  Last we heard, she was on vacation.

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  • HollyHope
    HollyHope Member Posts: 46
    edited July 2014

    Hi Ladies - It's been awhile, but I feel so at home here!! It looks like most of you are all getting through.  It's hard to believe we began chemo back in April now. I am happy to report that my last round of TC was 6/9 and can share that my energy is really back a month later.  I was wondering how long it'd take, but I'm really starting to feel more like me again :-) Next up is TE to implant surgery 8/25...yay!!  I hope you are all able to enjoy a little summer.

    Hugs!!

    Holly

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  • chknfeet
    chknfeet Member Posts: 29
    edited July 2014

    Hi ladies, for any of you who had hives, what did you take or do to provide relief?  I didn't have allergic reactions with any of the first 3 but 8 days past the last treatment, its confirmed that I'm having an allergic reaction.  It started with a rash on my head and mild itching throughout, then over night started getting really bad on my hands to the point that I couldn't sleep and had to take today off for a sick day.  Now its all over my legs and starting on my arms.  The hives are so bad that its making it hard to walk due to swelling at the knee and toes.  My hands have swollen so much I can't put on my wedding ring.  My MO prescribed Medrol 4mg, 6 day pack.  Started it late morning and so far barely any relief.  I'm at a loss.  Everytime I think my SE are mild, something happens to make me eat my words!  

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  • nancybel
    nancybel Member Posts: 81
    edited July 2014

    Chknfeet sorry to hear about the hives.  I was prescribed Prednisone for 5 days and still took otc Benedryl and a topical otc cortizone cream to help with the relief.  It did feel better after a couple of days, but continued taking the otc Benedryl because I just didn't want to feel the hives return.  Mine got pretty bad as well. good luck and I hope they go away soon.  My hives started day 10 after round 2 and day 5 after round 3.

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