Chemo for mum tomorrow...any advice please?

Hi any advice would be greatly appreciated. My mum had apr surgery 5 weeks ago and is recovering well. However, she has 6 month chemo treatment starting tomorrow. Oxaliplation through drip 3 weekly and capecitabine tablets. Has anyone had this who can tell me how bad the side affects are? I feel so sad for her as she's just over the op and gettingback to her normal self only for this to set her back again now. Iv heard you can loose the feeling in your hands and feet... Is it that bad? And will she be too tired to get out of bed the whole 6 months? I know it's different for each person but just some advice would help so I know what to expet. Also has anyone suffered an infection from the chemo? I'm especially worried about this

 

thank you

Steph 

Comments

  • Trubrit
    Trubrit Member Posts: 5,791 Member
    Hi Steph

    (you'll be sick of hearing from me. HA!)

    Neuropathy, numb hands and feet. I have that and I'm one year (tomorrow) out from treatment. You know how I look at it, I'M ALIVE, I can LIVE with neuropathy.  

    Some people don't even get it, or get it a little and it goes away. I didn't get it until the very end of treatment.

    As I mentioned in my PM, we are here for you and your mum. Just ask the questions, bring your concerns, vent, cry, laugh. We're here for it all. 

    As for tomorrow. I remember how apprehensive I was on that first visit. I didn't know what was going to happen. Does your mum have a port? I was real scared about that, as I HATE needles. Anyway, the nurse just popped the needle in and I didn't even feel it. I mean, have you seen the size of that needle? Its HUGE, and I did not feel it one bit. If mum has a port, then ask her Doctor to prescribe Lidocaine (if they haven't already) gel. Just rub a bit of that on about a half hour before and she'll be good to go. 

    And no cold drinks. Nobody told me about that, and when I had a drink my throat went all funny, all tight. Cold drink and food in the mouth would also give my teeth an electric shock feel too. That went away after a few bites of food, but the drink was limited for sure. Get some wooly gloves by the fridge, becasue the cold will affect her hands and fingers. I dropped numerous things, the worse was a huge tup of yogurt. What a mess. 

    The Chemo (infusion) room can be a really pleasant place, especially if you all get talking, or if you talk to someone. Its not a sad place at all, which was what I was expecting. 

    I am so glad you have posted. We will get your mum (and you) through these next six months. 

    SUE/TRU

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi Steph and welcome

    Here are some suggestons for you to help her do as well as possible with the treatments.

    If she does not already have a port, please ask her doctor about getting one.  This is a device the size of a quarter that is inserted under the skin near the collar bone and tubing attaches it to a vein in that area.  It is done on an outpatient basis.  The chemo is input thru it, rather than thru veins in the arms.

    She and you should have an after hours number to contact her onc or his on call nursing staff. 

    She or you should report any abnormal symptoms immediately to the onc.  That would include pain, nausea, temp rise, faintness.  There are meds which  can be given at the time of the chemo and also for use at home to help with most symptoms.  Never assume that you just have to deal with it.  Ask.

    She should not feel so tired that she is in bed for the duration.  She may feel more tired just after the treatment.  Some do, some don't.  Sme are able to work full time during treatment.

    The treatments are cumulative, which means she may feel more side effects as time goes on.  Again that is why it is important to report any changes in how she is feeling.  They can lower the dosage, add some pre-meds at treatment time or give her added meds or change them up for taking at home.

    My sister found that eating before, or even during treatment helped with the nausea.  It was also important to take the anti-nausea meds at the first sign of an upset stomach and not wait for vomiting. 

    Wishing your mom the best possible outcome with her treatments.

    Marie who loves kitties

  • Steph19877
    Steph19877 Member Posts: 20

    Hi Steph and welcome

    Here are some suggestons for you to help her do as well as possible with the treatments.

    If she does not already have a port, please ask her doctor about getting one.  This is a device the size of a quarter that is inserted under the skin near the collar bone and tubing attaches it to a vein in that area.  It is done on an outpatient basis.  The chemo is input thru it, rather than thru veins in the arms.

    She and you should have an after hours number to contact her onc or his on call nursing staff. 

    She or you should report any abnormal symptoms immediately to the onc.  That would include pain, nausea, temp rise, faintness.  There are meds which  can be given at the time of the chemo and also for use at home to help with most symptoms.  Never assume that you just have to deal with it.  Ask.

    She should not feel so tired that she is in bed for the duration.  She may feel more tired just after the treatment.  Some do, some don't.  Sme are able to work full time during treatment.

    The treatments are cumulative, which means she may feel more side effects as time goes on.  Again that is why it is important to report any changes in how she is feeling.  They can lower the dosage, add some pre-meds at treatment time or give her added meds or change them up for taking at home.

    My sister found that eating before, or even during treatment helped with the nausea.  It was also important to take the anti-nausea meds at the first sign of an upset stomach and not wait for vomiting. 

    Wishing your mom the best possible outcome with her treatments.

    Marie who loves kitties

    Thank you Sue and Marie. Very

    Thank you Sue and Marie. Very helpful indeed. I wI'll ensure any sign of pain or temp that she calls the number we will

    be given. my mum has also spoke with people who still suffer with the tingly hands and feet after treatment and like you Sue, they said at least they are still alive and have learnt to deal with it. its a shame but it's got to be done I know. 

    She brought herself some gloves and a thermometer so all ready to go Tomorrow! She's taking some food with her tomorrow as it's over lunchtime so hopefully like you said Marie. That will help.

    regarding the Pic line... She's opted out of it for the first course as she's heard you can get complications with it so she's having it through the hand tomorrow... I have warned her how painful it will be so will see how she goes with the first one.

    did anyone experience breathlessness or unable to breathe? Is that normal or should she be calling the number if this happens?

    Thanks a lot for responding I will let you know how she gets on.

    Steph 

  • db8ne1
    db8ne1 Member Posts: 142 Member
    Hi, Steph.

    Everyone handles the chemo and side effects differently.  Some tolerate the chemo very well.

    Unfortunately, I had them all plus some that weren't on the "expected" list of side effects.  That's said, I worked full time (although my FAB employer allowed me to work from home, when needed). I'd have my chemo day at the hospital every other Wednesday.  I'd drive myself there and back - no problem.  I usually spent the day working on my computer.  Then I'd leave the hospital hooked up to a 5FU pump that stayed put until Friday afternoon, when I'd return to the hospital to have it removed.  Then I'd usually crash all weekend (tired/fatigue) and start recouperating on Monday. 

    I'm a little anal - but I kept a journal:  Everything I ate and when, Meds I took and when I took them, BM's (had problems with constipation directly following chemo and then diahhrea), ALL Side Effects, no matter how small.  I took the journal with me to the oncologist on each visit.  It helped a lot.  My reaction to the Oxi was so bad that the doc cut the Oxi to 75% on the 4th treatment.  That helped, but I still have neuropathy in my hands and feet to date.

    Loves Kitties and Trubrit provided you with much of the same info I'd share - all good.

    One other thing I'd caution:  I was dizzy from the chemo.  On the 4th of July last year I had a family gathering at my home.  I was squatting to take a picture of my son and a baby on the kitchen floor.  When I stood up, I lost my balance and fell backwards, breaking BOTH wrists.  Really.  That was not the only time I fell, either.  So, be cautious...

    Let us know if you have any other questions.

    Best,

    J

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Hi Steph

    I'm so sorry your mom has to go through this.  You've already gotten some good advice here, the only thing I wanted to add was this:

    if the numbness and tingling reaches a point where it lasts from one infusion to the next without getting better, she should mention it to her doctor.  At that point, they may choose to reduce the dosage or remove the oxiliplatin all together.  This can avoid the risk of longer term damage.

    Tell her good luck from us!  Chemo is no fun, but it is doable.  And it's worth it in the long run if it saves a life!

    Oh...also watch out for dehydration.  If she has vomiting as a side effect, this can pose a real problem.  If she starts to have trouble keeping down fluids, she can go to the infusion center for an IV of fluids.  No one told me that, and if I had known, I could have avoided a couple of trips to ER.

  • Trubrit
    Trubrit Member Posts: 5,791 Member

    Thank you Sue and Marie. Very

    Thank you Sue and Marie. Very helpful indeed. I wI'll ensure any sign of pain or temp that she calls the number we will

    be given. my mum has also spoke with people who still suffer with the tingly hands and feet after treatment and like you Sue, they said at least they are still alive and have learnt to deal with it. its a shame but it's got to be done I know. 

    She brought herself some gloves and a thermometer so all ready to go Tomorrow! She's taking some food with her tomorrow as it's over lunchtime so hopefully like you said Marie. That will help.

    regarding the Pic line... She's opted out of it for the first course as she's heard you can get complications with it so she's having it through the hand tomorrow... I have warned her how painful it will be so will see how she goes with the first one.

    did anyone experience breathlessness or unable to breathe? Is that normal or should she be calling the number if this happens?

    Thanks a lot for responding I will let you know how she gets on.

    Steph 

    A pic Line and a port

    The two are different. 

    The pic line goes in the upper arm and is removable after treatment. The Port goes in the upper chest and stays in for the duration (and for some, a year or so afterwards). 

    Chemo is notorious for damaging veins, and that makes each subsequent visit harder for getting a line in. Tell your mum that there are complications whichever way you do it ( she probably knows that). I can only go by my expereince, and that was the Port, which I had no problem with whatsoever.

    I hope someone goes with your mum to all of her Oncology appointments and treatments. I think I may have told you in your initial post, but a notebook is a Godsend. I filled mine up with questions for the Doc, and wrote down his answers. If I had a problem spelling or writing I even had him write in it. I have a good Oncologist. Very patient.

    I was breathless but not to the point of not being able to breath. It was not an uncomfortable breathless.

    Everyone responds to treatment differently, that is what is so good about this forum. You're bound to find someone who responds allot like you (your mum), so advice is always here. You will also notice that its advice, and at the end of it, we always tell you that if its an immediete concern, call the Oncology office; the nurses are (usually) wonderful, and if they can't answer you, they ask the Doctor. We're good for easing the mind, but its always good to run it by the Doctor at some point. 

    Here is a picture of me at my first treatment. See the port in my chest, it is accessed and awaits the line hook up. 

    image

  • Steph19877
    Steph19877 Member Posts: 20

    Hi Steph

    I'm so sorry your mom has to go through this.  You've already gotten some good advice here, the only thing I wanted to add was this:

    if the numbness and tingling reaches a point where it lasts from one infusion to the next without getting better, she should mention it to her doctor.  At that point, they may choose to reduce the dosage or remove the oxiliplatin all together.  This can avoid the risk of longer term damage.

    Tell her good luck from us!  Chemo is no fun, but it is doable.  And it's worth it in the long run if it saves a life!

    Oh...also watch out for dehydration.  If she has vomiting as a side effect, this can pose a real problem.  If she starts to have trouble keeping down fluids, she can go to the infusion center for an IV of fluids.  No one told me that, and if I had known, I could have avoided a couple of trips to ER.

    Thanks a lot for all your

    Thanks a lot for all your responses .... I now know a lot more than I already did. So I can now be cautious of all these points you have all given me. I am feel so sorry for my mum... She starts it as we speak... My dad is with her. I'll be sure to come back to you all to let you know how she gets on and if we need anymore advice. Thank you :) 

    Steph