Need help on fluid retention!

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Need help on fluid retention!

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited June 2008

    Hi all,

    Just had my second AC, and I'm experiencing the same distressing fluid retention that characterized the first round. I drink and drink, but nothing comes out, so to speak. My stomach feels very distended. Has anyone else had this experience? I don't want to bother my oncologist or go to the ER again!

    Thanks,

    Annie

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008
    Annie, sweetie, I really think you need to call -- let the doctor be the one to tell you it's okay to deal with it at home.
  • Nico1012
    Nico1012 Member Posts: 1,492
    edited June 2008

    Annie,

    You reallyreally need to call the doc. AC can damage your kidneys/bladder if it sits in there too long!

    Nico

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Totally agree, Annie. Not something your oncologist doesn't wish to hear about.



    Best to you,

    Tender

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008

    Annie -- any update?  Hope your doctor helped you out and things are okay.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Well, it appears we are all wondering how you are doing today, dear Annie.



    Tender

  • gracejon
    gracejon Member Posts: 972
    edited June 2008

    Annie, please let us know what your doctor said.   I did have fluid retention but never asked.  I attributed it mostly to the steroid/decadron I was using along with the chemo.  They do blood work so doctor should know about kidney function and the like.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited June 2008

    Dearest all,

    Thank you so much for your concern, and please forgive my tardy reply. As you might have guessed, I ended up in the ER again! Thank God my oncologist is available 24/7 (actually, another reason one hesitates to impose), and was right on the money although he was out of town visiting his son who's in medical school in a neighboring community. He had alerted everyone at the hospital, and when I got there, they were ready and waiting for me.

    It appears that the Decadron is to blame for this situation, and that it was worsened by the fact that I'm also on penicillin for a dental problem (yeah, me! The person who obsessively visits her dentist four times a year!). I kept drinking and drinking, trying to flush the AC out of my system, and it kept accumulating in my tissues. It finally got so bad that the whites of my eyes had edema!

    The oncologist had given orders for me not to have steroids this time ar0und, but the chemo nurse made a mistake and gave them to me anyway. Well, what's done is done. After another Foley episode and a couple of rounds of Lasix, I'm back home safe and sound. I thank God also for DH who is always, always faithful and at my side, uncomplaining and supportive. What a blessing he is!

    The really fantastic news is that my tumor has shrunk! The AC is doing its job and I'm finally seeing some progress. The mass itself has diminished by ca. 40%, and the axillary nodes are now hardly palpable, although at least one of them was 2.5 cms just three weeks ago. My girls are so grateful -- after losing their dad, they really needed some good news on the parent front.

    I want to thank Tender and AnnNYC and Otter and all the others who told me hang in there, be patient, and wait for results from the change of regimen. You were so right, and I could have saved myself so much worry and grief had I only had a little bit of faith.

    I know this posting sounds very dramatic (melodramatic, even), and I hope you'll forgive. It was a scary episode, but all's well that ends well.

    Just make SURE that if the same thing happens to you, you get prompt action!

    Love to all,

    Annie AC Pee

  • otter
    otter Member Posts: 6,099
    edited June 2008

    Annie, you DROWNED that tumor!

    Glad to hear things are flowing again, although I missed out on all the excitement this time.  I thought I understood enough pharmacology to wade through all this, but I guess not.  On my Taxotere/Cytoxan regimen, one of the reasons they use dexamethasone (Decadron) is to reduce the fluid retention that would otherwise occur from the Taxotere.  But, your fluid retention occurs because of the Decadron?  Who knew...  It was nice to hear a happy ending.

    I'm sitting here grumbling because I'm trying to get my onco's office to schedule the DEXA scan my onco said I needed, and the poor, overworked scheduling gal just can't seem to get it accomplished.  She told me today that the reason she never called me back yesterday is because she needs my nurse to tell her what the "indications" are for the DEXA scan.  Like the fact that I've been menopausal for 5 years, and I'm about to embark on a 5-year adventure with Arimidex...  But my word isn't good enough, and she can't seem to find my nurse even though they work in the same office.  Sheesh.

    Mushy (edematous) hugs, Annie!

    otter 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008

    Annie, that is fantastic news on the tumor/node front!!!!  I am absolutely thrilled!!!!

    Glad they got you fixed up with Foley and Lasix (but I can't help feeling a little "g-r-r-r" about the decadron mistake -- grudge-bearing is a character flaw of mine, I guess -- though is it really a flaw if on behalf of others?)

    Hope your jaw is improving too.

    Thanks a million for the report!!!!

    Love,

    Ann

    P.S.  Otter -- "g-r-r-r" for you, too, about the indications for the DEXA scan...   Hope the nurse can be found somewhere on the premises...

    P.P.S.   I am on the computer in the waiting room of NYU Cancer Center's Breast Imaging department.  Waiting for my first post-BC mammo and ultrasound.  Saw from my surgeon's prescription that it's supposed to be digital mammo, so that's good.  What fun.  But it's wonderful that they have this computer terminal! 

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited June 2008

    Hi all:

    Just adding two cents here...I am on CMF and this happened to me as well. 

    It was from the decadron as well.  They cut the steroids to 1/4 of the dose and I have done fine thru the last 7 txts.  I do still retain a little bit but it's OK the next day.

    I guess it's a side effect to watch out for. 

    apparently, you can get a kidney "freeze" on this stuff, despite what they tell you about drinking water.  Not quite so much, and try to move around alot during IV treatment.

    Good luck

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited June 2008

    Hi all:

    Just adding two cents here...I am on CMF and this happened to me as well. 

    It was from the decadron as well.  They cut the steroids to 1/4 of the dose and I have done fine thru the last 7 txts.  I do still retain a little bit but it's OK the next day.

    I guess it's a side effect to watch out for. 

    apparently, you can get a kidney "freeze" on this stuff, despite what they tell you about drinking water.  Not quite so much, and try to move around alot during IV treatment.

    Good luck

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Thanks for updating us Annie, and I'm sure your nurse won't give steroids again at this juncture! Great attitude, what's done is done, and one that keeps us moving forward in this.



    I'm super happy to hear your report that the AC is doing its job, and most happy that you too may finally feel some sense of relief and hope that this is all doable. There's a post by a triple negative gal on "can AC be used twice" who also had medullary. I thought of you and wonder if you might not like to look at her post.



    Sorry Otter that your in the testing twilight zone. It is nice Ann, that more and more our cancer centers are accommodating, reflecting the times we patients live in.



    best to all,

    Tender

  • otter
    otter Member Posts: 6,099
    edited June 2008

    Nah, Tender, this isn't the testing twilight zone.  This is just the pre-testing waiting area.

    I'm sitting here, wasting my day, as I wait for the scheduling person to call me back.  I talked to her yesterday at 9 a.m., and she promised to call me "right away" as soon as she had a date and time for my DEXA scan.  When she never called, I called again at 9 a.m. this morning.  This time she said she hadn't called me yesterday because she needed to talk to a nurse to get the "indication" for the scan.  She said she would get the scan scheduled and call me back "within the hour."

    It's 11:30.  <sigh>  I've been singing high praises of this place, because of their patient care and efficiency.  I guess it's not too surprising that there is one employee who never got the memo.

    otter 

  • otter
    otter Member Posts: 6,099
    edited June 2008

    Annie, I know you can't see me, but I am jumping up and down with delight that the AC has worked on your tumor (and nodes!).

    Maybe the Taxotere/Avastin was just the set-up, and made the tumor even more vulnerable to the AC.  Or, maybe AC just works really, really well against your tumor.  That is such good news, though.  I was focused on the acute problem of your fluid retention, and your happiness about the tumor response kind of slipped by me.

    I think you and your dh should have a little celebration, once you're out of the fog and feeling up to it.

    More hugs,

    otter 

  • leaf
    leaf Member Posts: 8,188
    edited June 2008

    Annie AC Pee- All hail to the Tumor Destroyer!! Woo hoo!! You charmed him!!



    Decadron: Your mini-pharmacology lecture for the day: Steroids are complicated.



    Yep, dexamethasone (decadron) can cause fluid retention. There are 2 main classes of corticosteroid effects: the glucocorticoid effects, and the mineralocorticoid effects.



    The fluid retention is a mineralocorticoid effect. You have a naturally occurring drug in your body, called aldosterone. The net effect of aldosterone is usually to increase sodium retention in your body. Water gets dragged along with the sodium. Potassium is excreted in the urine. So the net effect is to retain sodium and water.



    Penicillin can cause fluid retention, especially the Penicillin sodium (which is only available IV.) I presume you were taking it orally, which would be the potassium salt (i.e. Penicillin VK, the K standing for potassium.) You can have electrolyte imbalances- like potassium loss, even with penicillin potassium - they think that penicillin acts like a nonabsorbable anion in the renal tubules and makes you secrete potassium.



    They don't know EXACTLY how Lasix works, but it make you excrete sodium, chloride, potassium, etc. (It actually inhibits the reabsorption of sodium and chloride and increases potassium excretion.) Water follows.





    The glucocoricoid effect in larger (pharmacological, not replacement) doses does all these wonderful things like decrease inflammation, all this wonderful stuff to all these different cells and cytokines. Not all of the actions are known. Long term, high dose steroids (as in high daily doses for months/years) redistribute fat from the peripheral to central areas of the body, so you look more like the Michelin Man with lean biceps, or, if you prefer, the Pillsbury Boy.



    They don't always know how fluid retention works. Sometimes they give steroids in things that you would think fluid retention would be bad - but it works maybe by decreasing inflammation. For example, steroids are used for some types of cerebral edema associated with brain tumors and neurosurgery.



    They don't know how steroids suppress nausea and vomiting, but I'm just glad it works (at least sometimes.)



    From your friendly, neighborhood hospital pharmacist, with lots of help from the 2006 drug guide book, Leaf.

  • otter
    otter Member Posts: 6,099
    edited June 2008

    OK, leaf, here's your test question:

    Fluid retention is a known, and potentially life-threatening, SE of the taxanes.  That's why all the pharm sites and packaging materials say to give steroids (dex) in conjunction with administration of Taxol or Taxotere.  (Drum roll....)

    Part A:  Through what mechanism does Taxotere cause fluid retention?

    Part B:  Through what mechanism does dexamethasone reduce the fluid retention that would occur with Taxotere?

    This is an open-book question.  You have as much time as you need.

    otter

    (Gee, Annie, doesn't that sound like a written prelim question?  And, leaf, you don't really have to answer it.  Some of it is theoretical anyway.) 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008

    Otter, I was wondering that myself!  Thanks for phrasing the question so well!

  • leaf
    leaf Member Posts: 8,188
    edited June 2008

    OK, I work the graveyard shift- we don't do chemos on that shift!



    I am *** guessing**** they are not using decadron for fluid retention. I am guessing they are using decadron for nausea, vomiting, and/or potential hypersensitivity reactions. "Paclitaxel frequently causes hypersensitivity reactions which can be severe, and all patients receiving the drug hould be premedicated to prevent severe reactions." About 20% of the patients in the study had hypersensitivity reactions, and reactions occured in 41% of patients despite premedication. I know they commonly do give other drugs for hypersensitivity reactions. One onc at the hospital I work at insists on using cimetidine (Tagamet) IV instead of the famotidine (Pepcid) we carry. These should help somewhat with some histamine reactions. In other words, they can use different types of premeds. They often use Benadryl, tylenol, hydrocortisone, decadron, ativan, etc, as premeds for various things in our onc dept. I am not privy as to the chemo protocols as they only occur during the day shift.



    The most common hypersensitivity reactions (according to this 2006 text) are mild, the most common being flushing, rash, hypotension, dyspnea, tachycardia, hypertension. Severe reactions can include...angioedema and generalized urticaria, and are probably histamine related. It says anaphylaxis or severe hypersensitivity reactions requiring therapeutic intervention and/or discontinuance of the paclitaxel infusion occurred in 2-4% of patients with breast, ovarian or lung cancer in the first, second, or third course of therapy despite premeds. Some patients tolerated subsequent paclitaxel doses.



    My friend has gotten decadron with every chemo dose (gemcitabine) she has gotten, and gemcitabine is not particularly nauseating.



    My 2006 book says in clinical breast and ovarian cancer trials, 21% of paclitaxel patients had edema. I don't know how true this is, or if they have changed their mind but it says "Edema in patients receiving paclitaxel commonly was focal and disease related; severity of edema did not increase with length of time spent in the study."


    It is unusual for us to know exactly why an adverse reaction occurs (for drugs in general). Some drugs have more simple mechanisms of action than others. But often we just know an adverse reaction occurs, not why. Often, for people on complex regimens, it can be difficult to tell what drug caused an adverse reaction, or if certain symptoms are part of a disease process.

    They don't know exactly how paclitaxel works as a chemo agent. One action probably is connected with its chemotherapy effect: it does promote *nonfunctional* microtubule assembly. (Microtubules are, among other things, the 'strings' that 'pull' the chromosomes apart - one set to each cell - when cells divide. They are also involved maintaining cell shape and motility. The cells get stuck in late G2 and M phase of the cell cycle.)

    They don't say anything about why paclitaxel causes edema. I bet they don't know why.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited June 2008

    Wow, you guys are phenomenal. Thanks for all the info; Leaf, you are a cornucopia of pharmacopoeia (sorry, the Voices made me do that). I'm feeling too punk today to communicate much, but it sounds likely my problem is the "kidney freeze" mentioned above. And yes, the oncologist will make sure I don't get anymore Decadron. He'd better. In fact, I think I'd rather just croak.

    AnnNYC, any news? We're all waiting ...

    Love to all,

    Annie Bald Bod

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited June 2008

    Annie, I've tried twice to answer your question!  (First time was hours ago -- didn't realize it didn't "take"!)

    I guess the failure of my posts is a representation of the lack of news!  I think this will be way too long a stint a limbo...

  • gracejon
    gracejon Member Posts: 972
    edited June 2008

    Annie, the medical community uses corticosteroids pretty frequently for side effects, inflammation etc.  I did understand the decadron was used at A/C time to decrease nausea and vomiting.  I did experience some significant side effects from decadron and my dose was decreased at chemo time and I was no longer given the oral pills to take after chemo day.  Meds are a balance of risk versus benefit and stopping or tweaking dosing is necessary.  I don't think we would need doctors if we all reacted the same way.

  • carollcsw
    carollcsw Member Posts: 1
    edited July 2008

    Annie, I'm new to this postings....18 months cancer free...I had Insavise Lobular.  I agree w/everyone....Yes you should tell your Oncologist...never thinking you are troblig your medical professionals.  During treatment I did not have swelling but after six different Serms/AIs, the swelling is terrible. 

    anyone had issues post treatment?

    i didnot have swelling but now afrter

  • hope4u
    hope4u Member Posts: 33
    edited July 2008

    Annie Bald Bod ... this is Annie the ballroom dancer ...

    There are some foods that are diuretics ... such as asparagus, grapefruit, watermelon, cucumber and celery ... I wonder if eating these foods would have helped ... or would the meds have taken over anyway??? ....  Just a question I'm throwing around ...

  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2008

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