helpful suggestions for my mom first day of chemo (gem/cis)

Discussion Board Forums General Discussion helpful suggestions for my mom first day of chemo (gem/cis)

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  • #87003
    iowagirl
    Member

    Hi….my experience was that the side effects like nausea and tiredness didn’t really get worse each time…..that is, more severe, but they lasted longer. Instead of the nausea being maybe a couple days….eventually, by 4-5 rounds of the chemo, it was every day, including the third week, which was the resting week between infusions. The blood labs can go down and up, bouncing around during the whole time, but in general, the effects on the blood labs are also cumulative as well. For some people, the out of range labs hit fairly soon into the chemo, but for others, it isn’t a big problem until 3- 5 rounds and for some, it’s never really much of a problem at all. It just depends on how your body responds. Mine we’re significantly out of spec by round 3, but still okay to do chemo. By the end of round 5, the numbers all were entirely out of whack…with hemoglobin at 7 (and requiring transfusions) and platelets very, very low as were WBC and RBC, etc. I took one extra week’s rest between round 5 and 6 and that brought some of the numbers up enough to do round 6 and “I” felt better mentally about it…even though there were good enough at the usual week to do chemo. Even so, the oncologist did the round 6 at 75% solution….and it still knocked all the numbers into the tank again. At that point, thank goodness, I was done with the whole chemo thing anyway…..but I’m sure I would have had to have sat out more weeks if I’d gone on longer….no choices.

    #87002
    middlesister1
    Moderator

    Dear Serena,

    For Mom, adjusting the meds so there was no nausea and also knowing what to expect made it easier. Our worst experience was the first cycle. However, it does build in the body so during the third week off, she still felt some of the effects and once through with the 3 cycles, she said it took about a month till all the the chemo brain was lifting and she was feeling like herself.

    Best wishes,
    Catherine

    #87001
    anrena18
    Spectator

    Thanks for everyone’s suggestions. She was a trooper and handled the first cycle fairly well. My mom just started her second cycle of gem/cis today and she was feeling a lot more fatigue (and more crappy) than the first cycle. My question is, and I know everyone handles each cycle differently, do the side effects improve or get worse with each cycle? I’ve read through numerous posts that some may experience a drop in platelets or WBC over time, and that fatigue is cumulative. Other than that, have people experienced the same side effects each cycle or does it get better/worse? Thank you all.

    Serena.

    #87000
    middlesister1
    Moderator

    One quick note on Emend- for the first cycle, to take home the drugs (I think it was 6 pills) had a co-pay of a few hundred dollars. Once we mentioned it to her doctor, they gave the larger dose by IV on chemo day. Seemed to work as well or better and we had to lay nothing out of pocket.

    #86999
    middlesister1
    Moderator

    Serena,

    The dexmethesone was added to my mother’s second treatment routine after she had a very rough time with the first one. Also added to her second treatment was a liter of IV fluids prior to chemo. It seems each doctor may have different protocols. What ended up working for Mom was-

    Prechemo:
    Zofran 16 mg by mouth
    Dexamethasone 12 mg by mouth
    Reglan 10 mg by mouth
    EMEND 150 mg IV over 30 minutes

    Prehydration- 1 liter normal saline over 1 hour

    after chemo (Gem IV- 30 min/ Cis IV – 1 hour) there was another 1 hour liter of fluids with a few things added in it to help flush out chemo.

    At home, on days 2-4, takes the steroid (Dexamenthasone).
    Reglan- every 8 hours, Zofran every 6 hours.

    They were long days, but we got into a routine and they always gave us a large cubicle since it seemed all the kids would stop in at some point during the day. Mom also did so well after they adjusted hospital meds and added steroid, that last few treatments she didn’t need the Reglan or Zofran at home.

    I hope the vest keeps her warm!

    Catherine

    #86998
    gavin
    Moderator

    Hi Serena,

    Don’t worry about asking the questions when you are there or here, ask away! And if it helps, you could make a list of the questions that you have now but forgot to ask when you were there so that way you could ask them the next time.

    Best wishes,

    Gavin

    #86997
    iowagirl
    Member

    Serena, one more thing……don’t feel bad about not asking the questions when you are there at chemo. There’s a LOT of stuff to “take in” and I don’t think they expect you to remember it all the first time….or for some time after that for that matter. And….I think our senses are working overtime, just trying to “get through” the whole experience. As I said before….don’t hesitate to call the oncology office to ask your questions inbetween time. They’d rather you had the answers than sit and worry about it. You aren’t bothering them.

    #86996
    iowagirl
    Member

    Serena, I suppose that your mom’s doctor may have done things differently, using oral drugs, but when you have any doubt, call up their office and ask to talk to the nurse or oncologist. The nurses are very knowledgable usually and should be able to explain what it was they did or didn’t give your mom. Then, you will have info to ask the oncologist at the next chemo, if something doesn’t sound right. The nurse should be happy to talk to you (or call you back to talk when she is free) to answer any questions you have.

    I wasn’t sure from what you said, whether you meant that the onc sent home a prescription for an oral version of the Emend. As I said, I got EVERYthing in the IV bags…and then was sent home with nothing else in my hands to take except for the script for the Atavan, as needed. I don’t think I even took it the first round at all. I relied on the IV drugs…ginger ale….and the Quease Ease inhaler from Walgreens that settled the queasiness down during those times when my stomach felt somewhat sick, like motion sickness, but never felt bad enough to vomit or dry heave.

    Julie

    #86995
    anrena18
    Spectator

    Julie – thank you ! Its weird how I have all these questions once we get home! I should have asked them during the 5 hours we were there!

    Serena

    #86994
    iowagirl
    Member

    Serena, All of my drugs, Emend, the dextramethasons, , etc, etc, were in IVs that I received on the day of chemo. I did not take anything else except for the occasional Atavan. Not sure about the cisplaatin dose…..I never inquired as to how much I was getting. The amount was pre-determined based on my weight each day of chemo.

    #86993
    anrena18
    Spectator

    Thanks everyone for their helpful responses. My mom had her first infusion this morning.

    Julie – good call on the Ativan. ;) I also made sure to bring extra bottles of water and snacks which came in handy.

    Catherine – you were right about the coldness of the drugs running through the veins. I did some online shopping during the infusion, and ordered my mom a down-feather vest :)

    Duke – purchased ginger ale and ready to use it in case. Repeated your joke to my mom, she actually laughed! :)

    Gavin- thanks for the extra links, I could always use a little more education on these chemo drugs.

    Btw – I noticed everyone mentioned feeling jittering and wired from the steroids… now from what I’ve read and studied, cisplatin is considered a “HIGH emesis drug” and so the best regiment to prevent n/v would be Emend (aprepitant) on days 1-3, Dexamethasone 12 mg on day 1, and 8 m on days 2-4, and Zoran (ondastetron) 16 mg on day 1…

    Did everyone follow that same regimen? I ask because after my moms first infusion day (day 1), she was only instructed to take the Emend, and not the dexmethasones on days 2-4… i’m wondering if my mom’s oncologist forgot to mention that in the directions.. or is it because my mom’s cisplatin dose is a “mild” dose.. any insights?

    THANKS so mcuh everyone :)

    Serena

    #86992
    gavin
    Moderator
    #86991
    dukenukem
    Member

    I had a little nausea a few days after the first tow rounds, then nothing later.

    For me, the steroids wired me. I typically take a nap in the afternoon then I’m up all night – like until 6 or 7 am. ( I spend a lot of time catching up on posts here.)

    (I’m the opposite of Julie.)

    You definitely want to take the anit-nausea med before there is a problem. If I waited until I was nauseous I could not keep it down.

    Your mom may develop a numbness in her toes (neuropathy). It’s not painful, but you should be aware it might happen. Amount depends on the person.

    I always bring snacks. Aimee even goes out to the nearby ChicFila to get me chicken strips and fries while I’m in the chair.

    You’ve got to drink lots of water to flush the chemo out. Try to get into the habit of getting a drink every time you pass a faucet. Room temperature flat ginger ale is also good.

    When you get home, it might be easier to “graze” frequently on small amounts rather than taking large meals. You’ll figure that out.

    Ditto on having something to do while in the chair. I read or go on-line with a tablet, or just rest with my eyes closed.

    When I was on carbo/gem and later gem only, they used my veins. When I went to FOLFOX6 I had to have a port. One important thing about a port is the skill of the nurse preparing the infusion. Some have the “touch”, others don’t. When you find one who is good, insist on having that person in the future. It makes all the difference in the world.

    Light-hearted attempt at humor.
    Patient: “Doctor, after the chemo will I be able to play the piano?”
    Onc: “Other than a little tingling in your fingers, you should be able to play just fine. Why do you ask?”
    Patient: “I can’t play now but I was hoping that would change.”
    ba-dump-bump ching

    Duke

    #86990
    middlesister1
    Moderator

    Hi Serena-

    Quick thought on pricey Emend. VERY $$$. We filled it for the first cycle, but then when we mentioned the cost to Mom’s ONC, they were able to give her a larger dose through her IV so that she didn’t need the pills at home. Not sure why, but when given in the hospital there is no charge.

    Mom did 3 cycles of GEM/CIS, the first was very rough, but that was before they figured out the right drugs for her( Emend and steroids (Dexmethasone) and also she was only weeks after an unsuccessful resection . For rounds 2 and 3, she was back to doing the cooking.

    Couple of thoughts on chemo day-

    1.Be ready for it it to be a long day. We often had to “wait for a chair” and then I think it was 3 hours for the actual infusion.
    2.Chemo can be very cold going through the veins. We bought Mom a few zippered vest which kept her warmer but still allowed access to her arms (we should have done port immediately)
    3. Hydration. When husband had chemo, they found that giving him a bag of IV fluids before the drugs kept the nausea away after. Also, when Mom did have the bad round, we brought her back in to ER and fluids made an immediate difference in how she felt . In hind sight, should have gone back in for fluids much sooner.
    4. One of the drugs burned a bit while being administered- speak up- they can slow down the drip to fix it if needed.
    5. We made a chart to check off when she had taken each med. When meds are all staggered 4,6, or 8 hours, it helped to lay out a few days at a time of when pills should be taken.

    We’ll be thinking of you and hoping your Mom is one who tolerates the chemo very well.
    Catherine

    #86989
    iowagirl
    Member

    A couple more things:
    When I got home after the day one chemo each round, I slept a LOT…..in the recliner…..and usually didn’t care to wake up to eat. I just wanted to sleep…with an afghan and not be bothered. By the end of day two, I was coming out of it…feeling a bit more alert and by the third day, I was feeling pretty decent again. The steroids and stuff they give you can make you jittery and not be able to sleep…just the opposite. I think I had one time I was up all night because I was so wired from the steroid. I just kept mysefl busy with genealogy on the computer…..but there’s always tv shows on all night…..or books to read or notes to write to people.

    Hope that is of some help. I’m sure others will have some other ideas and thoughts to share.
    Julie T.

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