Friday, July 7 2017

Hey Group - today is the first Friday since October 13, 2016 that I have not had to go into my hospital for the CA125 and total blood work up for chemo tomorrow.  My health insurance is not in force AND my doc said I could get away with one month treatment free - or rather when I asked him what he would do as far as oral chemo versus not having any chemo he said he would elect to be treatment free-he will decide how to proceed in August.  My beef today is that both of my oncologists have said "chemotherapy will weaken your body."  And I'm like AND???  So now I am going to counter every direction with "is this WHAT YOU WOULD DO" and "IS THIS HOW YOU WOULD TREAT YOUR FAMILY MEMBER."  Because, just a weaken comment, is not helpful, it is hurtful, and not positive.  Thoughts?  THANKS.  Hugs for today.

Comments

  • When my doctor calls for a delay the way I see it is that it's giving my body an opportunity to build up the strength to deal with the trauma of chemo.  A short delay is better than hammering your body and suffering through side effects and having a longer delay because your body and blood levels can't cope.  The first time I had chemo I was having Carbo and Taxol every week without a break until I got to the stage where my platelets were at 15, haemoglobin was in the 70s and neutrophils were too low. I needed platelet and blood transfusions instead of chemo so I was delayed a month and my treatment was changed to 3 weeks on one week off.  If you have to have a month off enjoy it!  At the moment I've been delayed a week ( my plan in 2 days of chemo and 27 days off) so I've gone into a frenzy of activity because I feel normal.


    Hope this gives your another way of looking at it ?.


    Nikki

  • Nikki - thanks for your fast response.  It feels better just having a validating email!  I read what you wrote and am shocked - firstly you are so young, and the numbers you quote ...good golly.  And the frequency.  I had no idea this could happen or chemo could be administered like this.  But anyway thanks a lot for writing back and sharing your experience, strength and hope.  You have BUSHELS you strong person.  And with that I can climb into bed - you have even motivated me to floss and brush - I was feeling terribly lazy.  Thanks again, Nikki.  xo H.N.  PS a fellow sister wrote about a CA125 level of 1600 and I fell out of my chair.  I again was SHOCKED.  There is so much they don't tell either out of lack of time or need to know or whatever but I am constantly with jaw dropped.

  • Hi Healthynow,   Like Nikki, I have had delays to my chemo regime and I always treat the week off like a bonus and try to fit as much into my week as I can while I am feeling extra good.  My oncologist likes my platelets to be above 90 to have chemo, it usually only takes a couple of weeks off for them to come back up again.  Do you get a printout of your blood results?  I find that is interesting to read and you can see the different levels in all the items.  I always check that my magnesium level is in the normal range, otherwise I take a supplement.  You will be pleased to know that after 2 cycles of chemo my ca125 marker has come down from 1600 to 800.  Yah! And I did have to have a two week break from chemo when my white cells were not high enough in between the two cycles.  Take care and enjoy your break from chemo. Helen

  • HELEN HELEN HELEN I am doing the happy dance for your 1600 to 800. Halleluiah! Yay! Hurrah. I have used my off chemo day to ride my 7 speed bicycle to the ocean, walk barefoot in the ocean waves and sand, and ride back in sub tropical sunshine, UPHILL (ha ha). I am going to WRITE out the reading for tomorrow's 9am women's group and WRITE out my response/reaction (I have gotten super lazy), I am going to continue cleaning off my hard drive, make a healthy lunch and dinner, and do everything in my power NOT to read about ovarian cancer, think about it, or wonder what about it. Just for this day I am going to accept the fact that I am a science experiment with really really smart, kind, people running the deal. OK I feel better. Thanks for writing. I was excited to see what you wrote. H.N.

  • Hi Ladies


    This is the first time I have written in this forum so I apologise if I am on the wrong thread??  : )


    I was diagnosed in February and have had 9 sessions of chemo, the operation where just about everything in me was removed and Im now onto my last chemo session tomorrow.  My CA125 was 35000 and I am now down to 6.  My specialists even went back and re did the tests as even they were shaking their heads.  Everyone I speak to is shocked at how high my levels were at the start.....I didn't understand then but I do now after all these months plus some research.  I am having chemo each week - exactly what Nikki (above) is having.  I have felt absolutely horrible this second time around, and last week I had to miss it as when I went in it was discovered that I had an infection.  I knew I had felt bad that week but that really explains why.  I thought I may have come a bit better this week due to missing it but I have been so tired.  I have pretty much slept all week.  I am hopefully having my last chemo tomorrow.  My question is ladies, how long does this take to start to feel normal again.  My head hurts, my feet and hands tingle, I have lost my appetitie and I am just exhausted all the time.  I thought I would feel better this week but I haven't and it really does depress me not having the energy that I once had.  Any advice or words from your own experiences would be appreciated.


    Valda

  • Dear Valda,


    WELCOME - we are so glad you are here.  You were diagnosed in February?  That's only six months - Feb, Mar, Apr, May, June, July - with 9 chemos - wow that's a lot too - so go REALLY REALLY gently with yourself.  A 35,000 number on the CA125 blew my mind.  I was like 380 at diagnosis and freaking at 59.  Now I don't care - just glad to have July off - to bicycle, cook, hang out with my dog, prepare to move, start a new job, found a cancer center I am going to check out, doing planks, drinking tons of green juice, read, take naps, laugh at the news.  Just do this a DAY AT A TIME.  Maybe an HOUR at a time.  Keep writing.  Keep a journal.  Read what others have done.  I had carboplatin and paxol first 5 then carboplatin and lipodox for 4.  I got down to 13.  I had the BIG surgery too in February.  Luckily out of 19 lymph nodes no cancer was found.  I had a giant tumor (12cm x 9cm)- got photos - boy was it ugly.  Anyway, keep writing :-)  Healthy Now.

  • Hi Valda,


    From memory it took about a month to feel like myself again after Carbo and Taxol.  The main side effects should wear off after about 2 weeks.  The tingling will eventually go.  One day you'll suddenly notice you haven't had it for a while.


    I haven't had an appetite for about 2 years now.  It's annoying because I don't feel like eating.  It's convenient because I can eat the same thing every day and not get sick of it so it makes grocery shopping easy and cheap.  Fortunately for me I now have a partner who loves to cook so my diet has more variety now!  Just keep the kitchen stocked with your favourite foods and be strict with meal times.  I have the added benefit of my mother constantly pestering me about how much I've been eating.  It's amazing how often just eating something will stop me feeling sick.


    At the moment I'm on caelyx and cisplatin and I have a month between treatments and I still don't feel 100% when it's time for the next round.


    Just be patient and give your body time to heal.  It's been through a lot.  Eat healthy and go for a walk everyday and you'll feel like yourself before you know it.


    Nikki

  • Thank you for your quick responses.  Every bit of advice and support really helps.  My daughters keeps telling me to slow down and let my body recover as its been fed 'weed killer' for 6 months ...they keep telling me that of course Im going to feel crap and Im allowed to be feel like that and to admit it when I do.  Im just so independent and used to doing for everyone and I hate not being able to do it all...: )


    Thank you again.

  • Oh Valda -  I just want to give you a big ol HUG.  Getting this diagnosis is a HUGE HUGE HUGE adjustment to our lives.  Basically, our lives will never be the same again.  BUT we can still have good, rewarding days.  We are both still in the grieving stage of having a catastrophic life altering disease.  You gotta let those loved ones do for you baby girl.  Getting my port was a HUGE tear drop - I was pretty sad that I would probably have to have this on my body till the last breath but the first day I swam and did the butterfly stroke made it a whole lot better.  Today my dog buddy YoYo hit it hard - the worst it's hurt since getting it - I was in pain - glad he did it b/c anything else would not have gone down as well - pain left - but WOW.  And of course we cannot play tennis or softball ....our life line.  Well here's another hug.  Healthy Now.

  • Hi Valda, Like you I developed an infection whilst I was having a round of chemo with my initial diagnosis and it really made me tired and I slept for a week.   An infection certainly sets you back quite a bit.  I can assure you that you will recover, it will probably take a bit longer, however you will feel more normal in a few weeks.   From my experience I always seemed to feel better when my hair started to come back, it was as if my body was telling me that it was recovering.  It is good to know that your marker is now down in the normal range.  Be gentle on your self and take care.  Helen

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