My mom's first chemo treatment - looking for words of advice

ninbug06
ninbug06 Member Posts: 7
edited March 2014 in Colorectal Cancer #1
I'm looking for advice for my mother's difficult situation. Her port was apparently placed in an unusual spot and the nurse could not find the hole for her first treatment. The nurse, to my dismay and certainly to my mother's, continued to poke her repeatedly and still could not find the hole. My mother was possibly still swollen from the port placement. My question is - what do I do for the next visit? I've asked my mom to ask for a pain killer (which she desires and asked for as she was getting poked multiple times in the chest) before the next time. Any other advice out there for new-comers and getting it right?

I am a health care professional and plan to attend my mom's treatments until she gets settled and comfortable w/treatment.

Thank you in advance for any help b/c this has been a very difficult few weeks w/pending treatment.

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    OK....Here ya go.....
    If the same nurse tries to push in the needle into the port then next time slam dunk her and get another nurse.......No, really, let them know that you want someone else to insert the needle and if they won't then demand it. The port can be a double or a single port and it depends on which it is as to whether as to how it goes in. The nurse may think its a double and it may be a single...Have your onc be there with them when time to insert and it will I assure you go a lot smoother.

    It may be that the port is not anchored down enough and flips over when the needle is trying to be introduced...simply feeling it by the onc will give him/her a reason to think something is wrong. They are that good. Also there is some cream (Lidocaine) I think that some use to deaden the area about an hour before treatment starts they simply glob it on then cover it with saran wrap so not to soil their clothes...Then for them it seems to become painless...

    There are several reasons as to why accessing the port is awkward.....I seem to as of late to have been bashing some of the medical field in their antics of what they call patient care, so I will apologize to the masses knowing that a few doesn't spoil the whole barrel full...But the few that are incapable sure need to be discarded from the barrel.......
  • khl8
    khl8 Member Posts: 807
    #3
    Ask for a new nurse
    I had this happen to me, but the nurse asked me id I wanted someone else to give it a try, and the next one got it in in one shot. It just might be one of those things. So, if it does not go in right away, ask for someone else and do not take no for an answer. And when you find the one who can access it with the least amount of discomfort, then ask for that nurse each time. It is ok to be demanding, when you are delaing with all this, you have to be.
    Kathy
  • Shayenne
    Shayenne Member Posts: 2,342
    #4
    khl8 said:

    Ask for a new nurse
    I had this happen to me, but the nurse asked me id I wanted someone else to give it a try, and the next one got it in in one shot. It just might be one of those things. So, if it does not go in right away, ask for someone else and do not take no for an answer. And when you find the one who can access it with the least amount of discomfort, then ask for that nurse each time. It is ok to be demanding, when you are delaing with all this, you have to be.
    Kathy

    Definitely.....
    ....Have your doctor prescribe the EMLA cream with Lidocaine, like Clift said. You glob it on thickly around the whole port area, about an hour before you go get accessed, and then put a piece of saran wrap on top of it, so it doesn't get on your clothes, it numbs the whole area, and you don't feel the needle going on, just a little pressure, but it's great!!

    Also, if a nurse can't get my arms or port on the 2nd try, I do ask for another person, they know when I get ticked, I don't like diggers, and I don't like them trying to think they know what they're doing. Not all nurses know how to access the ports right.

    Hugsss!
    ~Donna
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Port
    That really should not happen. At George's office, the nurse feels around for a few seconds and pops the needle right in. There "used" to be a nurse there that I heard people tell her no offense, but I would like another nurse to access my port. Don't be afraid to ask for someone else. Constant poking should not happen without reason. If it does not access after the second try, ask another nurse to join in. Sorry she had to experience this. Tina
  • ninbug06
    ninbug06 Member Posts: 7
    #6
    geotina said:

    Port
    That really should not happen. At George's office, the nurse feels around for a few seconds and pops the needle right in. There "used" to be a nurse there that I heard people tell her no offense, but I would like another nurse to access my port. Don't be afraid to ask for someone else. Constant poking should not happen without reason. If it does not access after the second try, ask another nurse to join in. Sorry she had to experience this. Tina

    Thank you and Confusion about necessity of treatment
    My kindest regards for those that gave me the nudge to be more vocal re: my mom's treatment. She had a growth/tumor in her colon that was removed, but had ONE lymph node that was positive. My mom also had breast cancer 4 years ago. She debated about going through chemo, suggested by her doc. After reading some posts about the difficulties of chemo (it can kill you before the cancer!) I wonder if she made the right choice to start therapy. Anyone else go through this?

    This whole experience has shaken me more than I would have imagined - could I really imagine the reality of this? I want to be a person armed w/appropriate questions for the nurses/docs that I already don't have much faith in. Thank you in advance for words of wisdom - with the hardship of dealing w/cancer second-hand I can't imagine living through this myself.

    Linda
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #7
    ninbug06 said:

    Thank you and Confusion about necessity of treatment
    My kindest regards for those that gave me the nudge to be more vocal re: my mom's treatment. She had a growth/tumor in her colon that was removed, but had ONE lymph node that was positive. My mom also had breast cancer 4 years ago. She debated about going through chemo, suggested by her doc. After reading some posts about the difficulties of chemo (it can kill you before the cancer!) I wonder if she made the right choice to start therapy. Anyone else go through this?

    This whole experience has shaken me more than I would have imagined - could I really imagine the reality of this? I want to be a person armed w/appropriate questions for the nurses/docs that I already don't have much faith in. Thank you in advance for words of wisdom - with the hardship of dealing w/cancer second-hand I can't imagine living through this myself.

    Linda

    If the port was new
    If the port was new and she'd only had it a few days, the swelling can make it very difficult to access.

    #1 Emla cream. Gob it on an hour early - I put it on before leaving the house and use the press and seal plastic wrap to protect my clothes.

    #2 If there is a lot of swelling they need to use the bigger/longer needle. I needed this the first two treatments. Now I am ok with the regular needles.

    #3 I've been told that my placement is good - it is rather high, but the nurses say that if the surgeons put it too low for women, it pushes down into the breast tissue and is very hard to access. So, next time ask for another nurse if the first one has trouble. But if the next one has trouble too, ask for an opinion on placement. I know one woman who goes to my onc had to have hers reinserted higher, and then it worked good.

    #4 Sometimes ports flip - they need to rule that out also.

    Good luck - I hope it goes better next time.
  • ann2008
    ann2008 Member Posts: 118
    #8
    ninbug06 said:

    Thank you and Confusion about necessity of treatment
    My kindest regards for those that gave me the nudge to be more vocal re: my mom's treatment. She had a growth/tumor in her colon that was removed, but had ONE lymph node that was positive. My mom also had breast cancer 4 years ago. She debated about going through chemo, suggested by her doc. After reading some posts about the difficulties of chemo (it can kill you before the cancer!) I wonder if she made the right choice to start therapy. Anyone else go through this?

    This whole experience has shaken me more than I would have imagined - could I really imagine the reality of this? I want to be a person armed w/appropriate questions for the nurses/docs that I already don't have much faith in. Thank you in advance for words of wisdom - with the hardship of dealing w/cancer second-hand I can't imagine living through this myself.

    Linda

    Linda
    I had 3 pos lymph nodes and finished my treatment May 09. Who knows if it the right choice just because of a few nodes involved, but my doc recommended it because if it got into the lymph nodes than it could already have been other places too. I did not want to just wait and see where it would show up next. I wanted to try and get rid of it. The treatment can be very stressfull at times and I wish I had seen this discussion board during my treatment. Everyone here has gone through some or a lot of the same things so there is so much knowledge and compassion here. What regimen is she taking? I had FOLFOX which is a standard treatment for cc. But it is not easy a lot of the time. Just keep coming back if more questions. For me I just kept counting down until the treatments were over.
  • ninbug06
    ninbug06 Member Posts: 7
    #9
    ann2008 said:

    Linda
    I had 3 pos lymph nodes and finished my treatment May 09. Who knows if it the right choice just because of a few nodes involved, but my doc recommended it because if it got into the lymph nodes than it could already have been other places too. I did not want to just wait and see where it would show up next. I wanted to try and get rid of it. The treatment can be very stressfull at times and I wish I had seen this discussion board during my treatment. Everyone here has gone through some or a lot of the same things so there is so much knowledge and compassion here. What regimen is she taking? I had FOLFOX which is a standard treatment for cc. But it is not easy a lot of the time. Just keep coming back if more questions. For me I just kept counting down until the treatments were over.

    Mom's treatment
    My mom is doing oxi and 5-FU (which we joke about the "FU" for sure)- the FOLFOX trio. We are trying the same thing as you did, which is counting down to one for the number of treatments. My mom thinks 11 treatments to go sounds easier than 6 months to go. I know that no one has a crystal ball to say that she will or won't develop cancer if she doesn't go on chemo, but since she had breast cancer before I feel she is at a greater risk for developing further cancers. Thank you all for your answers; this group has been tremendously helpful emotionally - I will continue to read and ask questions in the future.

    Linda
  • ittapp
    ittapp Member Posts: 383 Member
    #10
    I use lidocaine for every
    I use lidocaine for every treatment, it really works. Please have your Mom get a prescription for this from the Dr. She can just call the nurse and tell her to send in a prescription.
  • Patteee
    Patteee Member Posts: 945
    #11
    Man I am sorry your Mom had
    Man I am sorry your Mom had to go through that. How many days from port placement to the first treatment? I agree with others that it may have been too soon, too swollen. Mine wasn't even accessed for 2 weeks- and I never had issues with having to be stuck more than once. So hopefully that was the one and only time they will have issues with it.
    I agree with your Mom looking at 11 treatments left vs 6 months. I also found it easier not to dwell on what I had been through and to focus on what was ahead of me, not behind me. It might be helpful to remind her that yes last time they had trouble finding the port, but this time you have the cream to put on to numb it, this time a different nurse. That to try to focus on now and tomorrow and not what is behind and done. Does that make sense? Also I went to all but one of my treatments alone. Everybody is different with this, and only trying to tell you from my perspective. I actually could do what I wanted, watch what I wanted on TV, read a book, sleep, talk to the nurses- it was kind of a relief to not have to entertain someone. My mother came one time to a chemo treatment and looked bored the entire time. I felt really bad for her! Now whenever I saw the oncologist someone came with me- mostly cause I needed someone to make sure all my questions were asked and the answers understood.
  • thready
    thready Member Posts: 474
    #12
    ninbug06 said:

    Mom's treatment
    My mom is doing oxi and 5-FU (which we joke about the "FU" for sure)- the FOLFOX trio. We are trying the same thing as you did, which is counting down to one for the number of treatments. My mom thinks 11 treatments to go sounds easier than 6 months to go. I know that no one has a crystal ball to say that she will or won't develop cancer if she doesn't go on chemo, but since she had breast cancer before I feel she is at a greater risk for developing further cancers. Thank you all for your answers; this group has been tremendously helpful emotionally - I will continue to read and ask questions in the future.

    Linda

    Who knows
    Linda,
    I am a stage IIIB, I had the tumor outside of the bowel and there was 1 lymph node involved. I thought I might not do chemo, but after much reading and two opinions I decided it was best. (Actually the people here made it very clear that I needed to do this to help in my chances for survival.) My family also chimed in on this decision.

    We make our choices and then go on. You and your mom can make it and she is fortunate to have you help her. You mentioned you were not that happy with your healthcare providers. I want you to know that I am RN and my work has never been with cancer patients so this was all new to me. I was also very leery of the people at my Oncs office and what they had to say. Becasue of that I went to the University Hospital for a second opinion. They gave me the same information, 12 treatments of Folfox. You might want to get a second opinion, see what options you have. You will find the just about everyone here is very vocal about second opinions-because they know that we all need to find out as much as possible, and the more you know the more you can rightly choose. But mostly make yourself heard! Talk with the staff and the doctor, ask questions, ask for questions and information here, search the web, do what ever it takes to make yourself comfortable because this is a bit of a road and you and your mom need to feel as comfortable as possible.

    The port thing. I would tell you that repeated sticks is not what should be going on. If they can not find it they should ask someone else to access it. You can not hit what you can not feel-unless you are lucky, and this is not a place to gamble. If they don't get it after 1-2 sticks time to call for help, and don't be concerned that you might hurt someone's feeling, because accessing a port for chemo is more important.

    Take care and come back here often, I have found out more here than I have anywhere else.
    Jan

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