April/May 2012 Chemo hang out

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Mcm24- I'm one of the gals who is currently icing.  I'm on Cytoxan/Taxotere regimen and heading into #4 round next week.  I can pm you later today with what I've done for icing.  So far, my nails are hanging in there and continue to grow!!!
  • vjm
    vjm Member Posts: 79
    edited June 2012

    mcm24 -Our Cancer Agency provides ice gloves for hands only. Apply them 15 minutes before the drug runs and I keep them on for the saline flush after. When they warm up they are replaced by new gloves, or if too many people have been using them we just get big bags of ice and put our hands in. I had 4 taxotere treatments and so far I have saved my nails. Some facilities have booties, or folks bring in bags of ice or peas - I did not and have one black 2nd toe nail (covered by fantastic 'Flower Child' nail polish:). There are also 'Cold Caps' (see separate thread) that many women are having success with in preserving their hair in some fashion or another.

    My regimen: dex 2x/day day before, day of and day after; start 2 laxatives Senna-S day before up to 3x/day for severe constipation; baking soda mouth wash and brush of tongue as tolerated 4x/day; neulasta 2 days post chemo and start claritin and Tylenol for severe bone pain (thanks Dance); multivitamins when I can stomach them; try to flush with water as much as I can; I seem to tolerate yogurt and milky drinks right now but not much else; acupuncture seems to lessen the severity of the neuro twitchies and nausea; and always a goal to get to my yoga and a good daily walk. Today.... not so much after sleepless night. I did add Ativan this last round on the advice of our chat friends. Using TUMs as needed and take a Pantoloc daily for reflux. Let me know if you have any questions and go kick some chemo butt!!! vjm xo

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    vjm - great to hear from you - I was getting worried!  And guess what - we are now BOTH PFC!!!!!!!!!!!!!!!!!!!!!!!  Yes!   

    mcm24 - I am also icing during Tax (4 tx finished).  So far, nails intact.  I'm afraid of jinxing myself, so I won't claim full victory until I'm a few months PFC.  Only ~ 1 week PFC right now.   Start 15 min before, continue during, 15 min after.  I do periodically take my toes/fingers out to go to the bathroom, text someone, or take a drink of my ice that I also chew the whole time (to prevent mouth sores - it works - none so far!).  I get my nails REALLY cold, but I am sure to bring them out if it becomes painful to avoid frostbite.  You can't ice that much for 1.5 hours without hurting yourself - so be reasonable and take breaks as needed - just not too long.  I've met other women who have iced yet still lose nails - so I'm pretty hard core about getting them cold enough.  I use 2 baggies of ice and sandwich my nails between them.  I bought four $1 store little coolers to keep them from leaking all over the place - just stick my hands/feet in them. 

     I wear fingerless gloves and socks (just cut the tops off of old socks) to keep my hands warmer, and I also bring an electric blanket and warm clothes to the clinic to make it more tolerable for me.  I'm an ice wimp.  YMMV.  

     I also paint my nails with Sally Hansen Hard as Nails several times a week, and I avoid using my nails for anything. 

     I will PM this to you as well. 

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    TriChick - thanks!  I read your post and tears keep welling up in my eyes - that is really exactly what this is like.  I try to keep thinking of it as one step at a time, one treatment at a time, one foot in front of the other, and I know I can do it - but the extra burst of inspiration and belief sure helps. 

    Stacie, thanks for creating the rads thread.  I should finish chemo around September 13, so I probably will start rads around mid October.  I must admit I am more nervous about rads than I was about either surgery or chemo.  

    Melrose, thanks, I know I can count on you!  If I can't find that post I will PM you - and print it out.

    Dancetrancer, I need to add the two supplements you are taking to ward off Taxotere problems to my Taxotere list.  It's B6 and what is that amino acid again?  l-arginine or something like that?  I will keep it in writing.

    Boooo on the nausea!!!!  

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Indigo - no problem - I just PM'd this info to mcm24, so I can just copy and paste!

    ----------------------------------- 

    Taxol is known to cause neuropathy. It actually causes it more than Taxotere does. You can take supplements, if approved by onc, to reduce the incidence of it, hopefully. Well worth it, neuropathy is something you want to avoid if you can. Options are:
    10 mg L-glutamine powder stirred into a drink 3 x daily (total 30 g/day)
    100 mg Vit B6 daily
    1000 mg acetyl-L-carnitine with meals 3 x daily (total 3000 mg/day). This is being tested in a clinical trial right now, so obviously it has some research behind it to get that far

    I'm doing 50 mg Vit B6 (100 mg was too much for me - actually CAUSED tingling) and the acetyl-L-carnitine). I've had intermittent tingling (after my 3rd chemo) in my face, feet, and hands - but nothing has lasted. I will stay on the ALC for another month or two b/c sx can present in a delayed fashion after chemo.

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    Thanks, Dancetrancer!  Just curious, why did you not take glutamine?  I saw that recommended too from someone else, and my son already has some.

    The whole idea of neuropathy concerns me; my DH has diabetic neuropathy and it's no picnic.  At least it looks like neuropathy caused by chemo is usually reversible.  

  • mistym
    mistym Member Posts: 58
    edited June 2012

    Good afternoon to all you beautiful ladies and welcome to newcomers.

    I am home now after getting treatment #2 and the port works great!  I am so glad the decision was made to have the port installed. 

    My MO is surprised that the anti-nausea meds didn't help me with treatment #1 and I'm feeling very nauseaus now after #2 - I was finished at 11:30 and am feeling the side effects about the same time I did with #1. 

    Sometimes I don't understand when we know that treatments affect everyone differently, why any doctor is surprised if your side effects are not the "norm".  She also does not understand the bone pain but as you all know from some of us here, severe pain does happen.  I do like my MO though and feel comfortable with her.    I have lost 4 pounds since last treatment but am not surprised since eating anything of substance just doesn't work right now. 

    I'm going to go rest now because I have to feel better for tomorrow's CT scan.

    I hope everyone is feeling good today. Smile

    Hugs to all,

    Misty

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Indigo -  

    I took the glutamine the first round (no ALC) and mixed it into no-flavor pedialyte (my onc did not want me to have sugar...I have since relented and have whatever I want while on chemo).  Needless to say...I developed a HUGE aversion to pedialyte, and by association, the glutamine...even though it is tasteless.  Guilt by association.  LOL  I also was worried that maybe the glutamine had somehow caused that ear ringing to be worse (there are glutamate receptors in the inner ear, but it was too complicated for me to fully grasp).  So, to be safe, I switched to ALC.  Well, despite that I've had increased tinnitus on each round (which wanes after a few weeks).  So it wasn't the glutamate - no worries there.  Just the dang chemo! 

    P.S.  I've heard that you shouldn't put glutamine in warm drinks b/c it deactivites the amino acids.  I don't know if that's true but just thought of it so thought I'd pass it along.

    Neuropathy petrifies me.  I had some chronic neuropathy in my left leg for 10 years...finally got it under control...which is a miracle in and of itself.  I've treated patients for neuropathy with minimal to no success (just had to teach compensation for loss of balance).  It's very scary and although I don't want to freak anyone out...you all need to know this is not something to be taken lightly.  YES, neuropathy due to chemo is usually reversible, but if you search this board you will see some women here have chronic neuropathic pain and numbness from chemo.  If you get symptoms that do not go away or become where you are losing your balance or having trouble buttoning, etc...have a discussion with your onc about adjusting the dose, etc.   This is why the supplements were so important to me.  I am so glad my onc allowed me to take them.  

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    mistym - feel better soon!

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012
    Misty - I have been thinking purple for you since you mentioned the CT scan.  I hope the doc prescribed something else for your nausea, that just stinks. One other thing I can suggest, is that you try a homeopathic remedy called Nux Vomica.  You can get it at stores like Whole Foods.  My DH is not a fan of prescription meds AT ALL, but has used several homeopathics both personally and professionally.  Last winter he had the bad luck to get two bouts of a really awful intestinal virus, poor guy!  The Nux Vomica did help him.  I haven't had to use it myself, but I did use another homeopathic for my post-surgery nerve pain and I do think it helped when nothing else did.  If I can tell you any more about the Nux Vomica, please PM me.
  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited June 2012

    Dancetrancer, thanks again - I am copying and pasting all this stuff onto my Taxotere Prep document! 

    I have an aversion now to Lemonheads.... At least I didnt' love them before chemo!  

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    Mistym - Sorry to hear about the nausea.  It is hard to get under control sometimes.  The two days before my chemo and the week after chemo, I really watch what I eat and eat 5-6 small meals a day.  I never let my tummy feel empty so I am constantly eating something.  Believe it or not, one is more likely to get nauseous from taking the anti-nausea meds on an empty stomach.  My onco's office called to check on me the day before my first chemo to make sure I had taken my Decadron.  I told them I had taken it already but they got after me for not taking it with food and told me that I had better get some food in that tummy asap so I wouldn't get nauseous. I've been using two cancer cookbooks to help me out

    • Eating Well Through Cancer by Holly Clegg & Gerald Miletello, MD (book I rec'd at the hospital)
    • The Cancer-Fighting Kitchen by Rebecca Katz (has the Miracle Mineral Soup recipe in it.)

    Both books have helped me take the guesswork out of what to eat to help me with side effects and let me know that I don't have to survive on crackers alone through chemo.  Hope you feel better soon!!!!!

  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Dance- I love the thing you posted!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Thank you Marcia!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Hey all - this just came into my inbox (I signed up for oncology newsletters, yes, I'm a geek).  I wanted to share it in case it helps someone who is not responding to antinausea meds - looks like there is a new option you could ask your onc about.

    ------------------------------------

    Olanzapine Overcomes Chemotherapy-Induced Vomiting and Nausea
    Elsevier Global Medical News. 2012 May 23, K Wachter

    The antipsychotic olanzapine trounced standard therapy for breakthrough chemotherapy-induced nausea and vomiting in a clinical trial that could change the way some cancer patients are treated.

    In the double-blind phase III study, 30 (71%) of 42 patients, who received olanzapine (Zyprexa) had no emesis, compared with 12 (32%) of 38 patients who received metoclopramide (P less than.01) during a 72-hour observation period after highly emetic chemotherapy.

    In addition, 28 (67%) patients on olanzapine had no nausea, compared with nine (24%) of those patients on metoclopramide (P less than .01), said Dr. Rudolph M. Navari, who presented the study during a press briefing in advance of the annual meeting of American Society of Clinical Oncology, June 1-5, in Chicago. Dr. Navari is the director of the Harper Cancer Institute at Indiana University in South Bend.

    ASCO president-elect Dr. Sandra M. Swain, medical director of the Cancer Institute at Washington Hospital Center, called the findings "a great step forward for quality of life for our patients.

    "This is a huge advance," said Dr. Swain, a breast cancer expert, who co-moderated the teleconference. "We've come a long way to really treat and cure these patients ... these side effects can be intolerable to patients. Sometimes patients will opt out of curative treatment, and we certainly don't want that, when we know we've made advances."

    The researchers included chemotherapy-naive patients who received highly emetogenic chemotherapy: more than 70 mg/m2 cisplatin, or more than 50 mg/m2 doxorubicin and more than 600 mg/m2 cyclophosphamide.

    Patients who developed breakthrough emesis or nausea despite guideline-directed prophylaxis were randomized to receive olanzapine or metoclopramide. Pre-chemotherapy prophylaxis included intravenous dexamethasone (12 mg), intravenous palonosetron (0.25 mg) and intravenous fosaprepitant (150 mg); post-chemotherapy prophylaxis was daily oral dexamethasone (8 mg, days 2-4).

    Patients received 10 mg oral olanzapine for three days or 10 mg oral metoclopramide three times daily for three days. Patients were monitored for emesis and nausea for the 72 hours after the initiation of therapy. In addition, nausea was measured by patients on a visual analog scale (0-10), with 0 being no nausea and 10 being maximal nausea.

    Patients in the two groups were similar for age, sex, Eastern Cooperative Oncology Group (ECOG) performance status and diagnosis (Five bladder cancers, 40 breast cancers, eight lymphomas and 27 lung cancers).

    "Both olanzapine and metoclopramide were well tolerated with no grade 3 or 4 toxicities," said Dr. Navari. No central nervous system toxicities were observed in either group.

    Olanzapine is indicated for treatment of psychosis and is associated with weight gain, but the side effect should not be a problem for cancer patients.

    "The side effect of weight gain occurs in patients, who receive the drug for three to six to nine months," Dr. Ravari noted. "So using it for a short period of three to four days once a month - we did not see that in the current study, nor did we see that in previous studies."

    Dr. Navari had previously reported that patients receiving highly emetogenic chemotherapy were about twice as likely not to experience any delayed nausea with an olanzapine regimen compared with a standard aprepitant (Emend) regimen (68% vs. 37%) in a phase III clinical trial. The two regimens worked similarly well for preventing acute nausea and for preventing both acute and delayed vomiting, that study found.

     

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Dancetrancer- I love your geekness!!!!!Cool
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012
    Awh thanks Melrose!  Embarassed  It has come in handy on this d*mn bc ride! 
  • Gemmie
    Gemmie Member Posts: 103
    edited June 2012

    Welcome, Debbie. I know it's a lot to absorb in a short amount of time. Breathe, breathe, breathe. . . .  and read. It's usually not as awful as what you may be imagining. And Sandik is right, read the chemo section.

     And did I say welcome! 

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012

    IndigoMont- Here is my latest version of Icing 101 so you don't have to go hunting...  HUGS!!!Wink

    • Time period for icing- You will for 1/1/2 hours in total= 15 minutes before the Taxotere infusion + 1 hour during the infusion + 15 minutes after the infusion.
    • Ice- You can use frozen peas in quart size ziploc bags marked "Do no eat!!!" and reuse those bags of peas.  I opted to use ice.  I have an ice tray that makes small rounded bottom circular ice.  I tried the peas and decided I liked the ice better because I thought it stayed colder longer.  My infusion center has ice available for me to use if I want to use it.
    • Transporting ice to infusion center- I use a cooler with a freezer pack plus take extra infusion ice bags.  
    • What to put the ice bags in- That is a personal preference.  Some just put the ice bags on their feet and wrap a blanket around them so the bags don't fall off.  Some use insulated lunch bags and put the ice bags in those.  My hands and feet are small so I'm using some neoprene wine cooler bags that I bought at Target for $6.99 each.  I figured I could use the wine bags later on.  I'm still able to hold an insulated mug so I can drink really cold water and eat ice during the infusion.  
    • Hand & Feet Protection- I wear thin sports socks on my feet when I ice the toes.  The socks keep the rest of my feet warm during the icing.  On my hands, I wear a pair of knitted wristlets/fingerless gloves to keep the rest of my hands warm.  Some people take their feet/hands out of the ice periodically; however, I don't do that.
    • Process- I let the infusion nurse know that i'm icing so we can coordinate when I should start the icing. Once I know when I'm going to start the infusion, I put the ice bags in the bottom of the Neoprene bags.  I put the ones on my feet first and adjust the ice bags so my toes nails are covered.  I then put the ones on my hands on and adjust the ice to cover my fingernails.  My husband helps me with this process.
  • Stacie
    Stacie Member Posts: 607
    edited June 2012

    Indigo-I am reading "Anti-Cancer" too. LOVE IT.



    Melrose-It's not LE it's a pocket of fluid collecting under my arm under my node scar, fairly common side effect. Doesn't mean I'll have LE. But worries me my risk of LE might increase. It is super uncomfortable when it swells and a big needle to drain it. I have to have it aspirated every few days until it heals. It is the same pocket my drain was in and the fluid came back. It would be more likely I think with a full node dissection than sentinel node because more tissue is removed hence a bigger pocket. I put it on a list I call "bonus crap". It's a long list.



    Going out to dinner with hubby and son. Hope you all have a nice eve.

  • sgtgee_69
    sgtgee_69 Member Posts: 14
    edited June 2012

    Hello all hope thing are going well for all, I'm feeling pretty good this week no pain, monday was the first day with no pain since 2 days after my second treatment.   My treatment is next Wednesday better enjoy this weekend. Blessings to all

  • silkuk52
    silkuk52 Member Posts: 13
    edited June 2012

    Welcome Debbie-I was Stage I or II before surgery so I can relate. Now after pathology report 2.5 & 14/26 nodes so now Stage IIIc. HAD all those tests & no nets & wish the same for you! You are right this thread is a wealth of info. Wish none of us had to be here!

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2012
    Stacie- So glad it isn't the LE!!!  Enjoy your dinner out with your family!!!  HUGS to you!!!
  • chapter4
    chapter4 Member Posts: 155
    edited June 2012

    I will finish chemo July -18 then 33 rad treatments...I will be joining the rads thread!



    But this is this first I've heard about not a good idea to reconstruct after radiation. Anyone know anymore? I've had a mastectomy and plan to do the other one after rads then reconstruct...is there a better way? Looking for information/advice.



    Thanks ladies!

  • Rose_d
    Rose_d Member Posts: 144
    edited June 2012

    My plan is to do my tissue expander exchange 1 month after I finish chemo (I finish on July 23rd) and then start rads after that. Looks like I have 25 sessions in store.



    My doc said as long as you are young and healthy and healed ok the first time it's fine to do it before rads. Otherwise she recommends waiting 6 months from the end of rads. She did say there is a risk the radiated side will end up smaller than when you start.



    Rose

  • Fierro6
    Fierro6 Member Posts: 224
    edited June 2012

    My plastic surgeon won't do the swap (I have a tissue expander) for six months after rads, even though I'll be done with fills long before rads start.  He feels that rads are just too hard on the skin and tissue.  I trust him completely and haven't been led wrong yet, so I'll wait.  Besides, I'm still working on names for the prosthetic.  So far, all I have is:

    1. Lefty
    2. Sleeps-in-a-Drawer (her Indian name)
    3. Expand-o-boob
    4. The New Girl
    5. Frankenboobie
    See?  I can't stop this list with only five names!  I can wait.   
  • kjiberty
    kjiberty Member Posts: 1,385
    edited June 2012

    Dance and Melrose;  Thanks for the info.  

    Trichic:  Good analogy.  It brought tears to my eyes.

    MistyM:  hope you're feeling better soon! 

  • lsharvey822
    lsharvey822 Member Posts: 257
    edited June 2012

    Fierro - I've been in the dumps approaching tx 3 (I know ..I'm being a baby) but your posts always make me laugh!  thank you!

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited June 2012

    Chapter4 - basically, there are three ways to reconstruct (that I'm aware of) - implants, flaps, and fat grafting.  Fat grafting is really new and only a few select surgeons are doing it around the country.  (If it is something you are interested in, I've heard good stuff about Dr. Ahn in NYC.)  Each type of recon has it's pro's and con's, for sure. 

    With radiation, it does complicate reconstruction, b/c the tissue is more fragile. You have to wait at least 6 months after rads to start recon, some PS's say 1 year.   It can definitely be done - you just need to know there can be complications.   Here are some links to more info.  FYI, the 2nd link has boobie pics showing capsular contracture and how they corrected it nicely.

    Reconstruction after radiation? 

    Radiation and Reconstruction 

  • vickilind61
    vickilind61 Member Posts: 338
    edited June 2012

    Welcome Debbie.

    Fierro, I vote for Frankeboobie.  Like that one a lot.  If you're taking votes anyway. 

    This is definately the most active thread on my faves' list.  two pages?!  You all been busy!

    The good news: still only minor SE's: fatigue, minor digestive issues (and I mean minor) and some bone pain from the Neulasta shot.  I am blessed and I am not trying to brag.  My heart goes out to those of you who are getting nailed with SE's.  So sorry.  I am about 5 days out now, so the next few days may bring changes.  We'll see.

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