Herceptin...

Gizzy
Gizzy Member Posts: 12
edited March 2014 in Breast Cancer #1
Hello. I spoke to all of you a few months ago when my mom was diagnosed with breast cancer. It has been a loooooooong road to here since November 07, of 2008. My post was what to say to my mom. She is taking only the Herceptin treatment. Her cancer doctor has been very rude and I am not sure what to do at this point. But, he told my mom there is no cancer left in her whole body and that he wouldn't want to put her on chemo because "she is so against it anyway and it will probably make her very ill" I am glad for no chemo as she is 84. However, her first does of herceptin made her eyes turn bright red. her first treatment was Jan 29. now almost 2 months later we have noticed a huge rise in her blood pressures 189/82; 176/80; 172/66 and her vision has become blurred. She will have her eyes looked at but she had caterak surgery on both eyes in September of 2008. Her vision was perfect. The cancer nurse (a man) who worked at our local hospital who neglegently took care of my dad during his many stays at the hospital as well during his dialysis treatments is the main boss at the cancer center here. He was upset that my mom didn't want him to use her port to take blood draws. My mom is in excellent condition, and has veins to spare she is that healthy. He had to poke her several times and brused her all up. He never took her labs before, he was the only one there that day. I didn't go with my mother as my son was ill at home. The one time I didn't go and this happened to her. I called to the cancer center and told the person in charge how nasty this man was to my mom. I had called my mom's cancer Doctor as I was instructed by my mom's family doctor (he was basically unavailable and still is as far as being able to see her in his office becuase he had back surgery but he instructed me to tell her cancer doctor about these reactions she has been having with her BP and blurred vision. I did that. When my mom had her follow up appt with the cancer doctor he came in and got upset with me for calling him because the office telephone rolls over to his cell phone and his girlfriend got mad at him and thinks he is having an affair and that his girlfriend wanted to know if I was pretty and he said he told her yeah she is she's got all these rings and has been married at least 8 times and then went on to be rude to my mom and told her well you don't want to take treatment so that's up to you so just don't. If you don't want to you don't have to. My mom never said anything about not taking treatment, she wants to continue with it. And then he goes on to make comments like "what is with all your rings the both of you?" and then went on to tell me he liked my shoes and what kind were they and if I thought they would fit him? I was so embarassed plus he didn't even examine my mom take her bp or her vitals....just told us by and lets keep on the treatments. I wasn't able to speak with our family doctor as he was sick but his wife is a nurse and I did tell her. She was appalled by what he said, but to just think of my mom's best interest and try to ignore him as he is one of the best doctors here. My mom is doing well except for these things but there are those side effects like heart damage, and hypertension those are 2 of the side effects listed. I'm so worried. You see, my dad was a very sick man. He had heart disease, Parkinson's disease and kidney failure. I oversaw his condition for 8 years of his dialysis plus 5 years prior to that for a quadruple bypass. I was always cautious with his condition and I kept a close eye on the doctors. Even when he was being kept alive on machines and meds, I needed his doctors to tell me to be sure even when there really was no hope that his brain was not working anymore, I asked for brain scan. The person right now in charge of the cancer center is the same man who denied me and my father that brain scan. I went to the CEO of the hospital when that happened and she had the scan done within 15 minutes. How can I trust this person with my mother now? I don't know what to do. I don't want them to treat her badly and they already are, including her own cancer doctor. You see, we have a brand new cancer center that just opened here in our town about 1 1/2 years ago. If I say too much or keep my eyes on them too much I'm afraid they will not treat her and the next cancer place is 132 miles away. I can't drive that far once a week by myself with my 8 year old son and him miss school. I am at my wits end. I am grateful for your help before and I don't mean to bother you all as you all have been through so much as well. I'm stumped with this. I've never had anyone treat me this way and I don't know what to do about this. God Bless and thank you all

Comments

  • seof
    seof Member Posts: 819 Member
    #2
    so sorry
    I am so sorry you are having to go through all of this on top of your Mom having cancer. I think in your situation I might try going to the CEO of the hospital again to see if there are any other Drs. who can take care of your Mother, or go to the new center. Drs. are supposed to be there to help. If yours is not helpful, or if you cannot trust him/her, I think you should go to someone else. I definitely think the CEO of the hospital needs to know the inappropriate things that were said to you. You should certainly write down anything like that and keep a documented record. Maybe start taking a tape recorder, or something you can use to prove what is happening.

    I hope this gets resolved. Your Mom is blessed to have such a supportive daughter. seof
  • labtech
    labtech Member Posts: 37
    #3
    seof said:

    so sorry
    I am so sorry you are having to go through all of this on top of your Mom having cancer. I think in your situation I might try going to the CEO of the hospital again to see if there are any other Drs. who can take care of your Mother, or go to the new center. Drs. are supposed to be there to help. If yours is not helpful, or if you cannot trust him/her, I think you should go to someone else. I definitely think the CEO of the hospital needs to know the inappropriate things that were said to you. You should certainly write down anything like that and keep a documented record. Maybe start taking a tape recorder, or something you can use to prove what is happening.

    I hope this gets resolved. Your Mom is blessed to have such a supportive daughter. seof

    herceptin
    Hello, im so sorry about your experiences i too have come into a situation similar and i believe it is because my insurance changed. my cancer doc told me the other day he is just stopping the herceptin because there is no evidence of it working. i got the drug for 6 wks and now they just stop it.??? i am taking notes and getting advice of other doctors too. I have come to think we are all experiments and they choose to treat us anyway they want to. my chemo nurse is rude and and i have to remind her all the time to use the freeze spray for my port to i don't have pain. i was put in a closet the other day to have my treatment with IV poles and i couldn't get out to get to the bathroom. make sure you document everything and keep an eye on them if you get nowhere get a lawyer. i hope it gets better for you.

    tracey
  • tgf
    tgf Member Posts: 950 Member
    #4
    labtech said:

    herceptin
    Hello, im so sorry about your experiences i too have come into a situation similar and i believe it is because my insurance changed. my cancer doc told me the other day he is just stopping the herceptin because there is no evidence of it working. i got the drug for 6 wks and now they just stop it.??? i am taking notes and getting advice of other doctors too. I have come to think we are all experiments and they choose to treat us anyway they want to. my chemo nurse is rude and and i have to remind her all the time to use the freeze spray for my port to i don't have pain. i was put in a closet the other day to have my treatment with IV poles and i couldn't get out to get to the bathroom. make sure you document everything and keep an eye on them if you get nowhere get a lawyer. i hope it gets better for you.

    tracey

    sorry
    I'm so sorry you are having such a rough time. I am one of the very lucky ones. When I go for my infusions I am surrounded by a wonderful group of angels. There are comfy recliners and cold drinks ... televisions ... and wonderful caring nurses. I can't believe they really put you in a closest. That's horrible!

    I do have one suggestion though regarding the freeze spray. Several women on this discussion board suggested EMLA cream ... and it is TERRIFIC! It is a prescription ... but you blob it on one hour before your appointment and cover it with a bandage. By the time you get to the appointment and they get ready to stick the needle in ... the port spot is totally numb. Really. It's the greatest!

    hugs.
    teena
  • rjjj
    rjjj Member Posts: 1,822 Member
    #5
    labtech said:

    herceptin
    Hello, im so sorry about your experiences i too have come into a situation similar and i believe it is because my insurance changed. my cancer doc told me the other day he is just stopping the herceptin because there is no evidence of it working. i got the drug for 6 wks and now they just stop it.??? i am taking notes and getting advice of other doctors too. I have come to think we are all experiments and they choose to treat us anyway they want to. my chemo nurse is rude and and i have to remind her all the time to use the freeze spray for my port to i don't have pain. i was put in a closet the other day to have my treatment with IV poles and i couldn't get out to get to the bathroom. make sure you document everything and keep an eye on them if you get nowhere get a lawyer. i hope it gets better for you.

    tracey

    Hi Tracey
    How did your Dr. determine that it is not working? I had Herceptin for 6 rounds with my chemo and now it will be for another 6-7 monthes, once every 3 weeks. I was just wondering.. do they test you to see if its working and if so How? I have heard herceptin is very powerful. but only targets bad cells.

    As for getting my infusions..I absolutely love my chemo nurses they are so kind,,bringing me anything to eat or drink, recliner, remote control for Tv. Soft blankets that they let me keep when i leave..and many good books on surviving cancer (very informational) and they let me keep those also. They also give me the emerald cream (3 tubes so far) and the tagament bandaids to wear on top of it for an hour before they access my port. They also have givin me wigs, hats, you name it. They unplug me everytine i have to use the bathroom. I think it takes special people to do this job and i am so sorry you don't have this. Maybe you could talk to the CEO about this problem. None of us deserve to be treated rudely.
    God Bless
    Jackie
  • tommaseena
    tommaseena Member Posts: 1,769
    #6
    rjjj said:

    Hi Tracey
    How did your Dr. determine that it is not working? I had Herceptin for 6 rounds with my chemo and now it will be for another 6-7 monthes, once every 3 weeks. I was just wondering.. do they test you to see if its working and if so How? I have heard herceptin is very powerful. but only targets bad cells.

    As for getting my infusions..I absolutely love my chemo nurses they are so kind,,bringing me anything to eat or drink, recliner, remote control for Tv. Soft blankets that they let me keep when i leave..and many good books on surviving cancer (very informational) and they let me keep those also. They also give me the emerald cream (3 tubes so far) and the tagament bandaids to wear on top of it for an hour before they access my port. They also have givin me wigs, hats, you name it. They unplug me everytine i have to use the bathroom. I think it takes special people to do this job and i am so sorry you don't have this. Maybe you could talk to the CEO about this problem. None of us deserve to be treated rudely.
    God Bless
    Jackie

    Herceptin
    Jackie,
    I too will be on Herceptin. Once a week for 12 weeks with Taxol and then Herceptin alone every 3 weeks for 1 year.

    I asked my oncologist about how do they know if the cancer is gone since it is HER2+. She told me that they are going by the clinical studies that they have. One group of women HER2+ had no Herceptin and reoccurance of cancer was 60% and then the other group of women had Herceptin for one year and the reoccurance of cancer was 1-2%.

    I hope the above information is accurate.
    I would like to be in that group of 1-2%. I hope Herceptin works well for me.

    Margo
  • tgf
    tgf Member Posts: 950 Member
    #7
    tommaseena said:

    Herceptin
    Jackie,
    I too will be on Herceptin. Once a week for 12 weeks with Taxol and then Herceptin alone every 3 weeks for 1 year.

    I asked my oncologist about how do they know if the cancer is gone since it is HER2+. She told me that they are going by the clinical studies that they have. One group of women HER2+ had no Herceptin and reoccurance of cancer was 60% and then the other group of women had Herceptin for one year and the reoccurance of cancer was 1-2%.

    I hope the above information is accurate.
    I would like to be in that group of 1-2%. I hope Herceptin works well for me.

    Margo

    Me too
    Margo ... It sounds like I'm on the same "plan" you are on. I go today for #7 of taxol and herceptin. I hope it goes as well for you as it is for me. I have NOT had any nausea ... at all! Thank goodness. But I do take my anti-nausea pill when I get home from my treatment ... just in case. The only real side effects I have had are: a rash on my back ... tops of my hands extremely dry and peeling and ... the worst part of it has been the constipation. I don't want to get too graphic ... but the "diaper rash" has been pretty bad. The only other side-effect is my hair. The doctor told me my hair would thin ... so I expected it to thin ... a few hairs here ... a few hairs there etc. But on day 15 of my treatment I ran my fingers through my hair and ended up with a hunk of hair in my hand. It DID indeed thin ... in splotches and blotches. :-) Anyway ... since I didn't want to walk around leaving a trail of flying hair ... I had a friend shave it all off and I've been wearing hats and scarves since. I doesn't bother me in the least... except that I must still be losing hair because it does sort of itch and burn. The dermatologist gave me some foamy stuff that does seem to help.

    I assume you've got a port? I'm a weenie about needles ... so the port is the greatest. And don't forget to get a prescription for EMLA cream. You blob it on an hour before your appointment and cover it with a bandage ... and by the time your get ready for your infusion ... the port spot is numb. EMLA is the greatest!

    good luck ...

    hugs.
    teena
  • tommaseena
    tommaseena Member Posts: 1,769
    #8
    tgf said:

    Me too
    Margo ... It sounds like I'm on the same "plan" you are on. I go today for #7 of taxol and herceptin. I hope it goes as well for you as it is for me. I have NOT had any nausea ... at all! Thank goodness. But I do take my anti-nausea pill when I get home from my treatment ... just in case. The only real side effects I have had are: a rash on my back ... tops of my hands extremely dry and peeling and ... the worst part of it has been the constipation. I don't want to get too graphic ... but the "diaper rash" has been pretty bad. The only other side-effect is my hair. The doctor told me my hair would thin ... so I expected it to thin ... a few hairs here ... a few hairs there etc. But on day 15 of my treatment I ran my fingers through my hair and ended up with a hunk of hair in my hand. It DID indeed thin ... in splotches and blotches. :-) Anyway ... since I didn't want to walk around leaving a trail of flying hair ... I had a friend shave it all off and I've been wearing hats and scarves since. I doesn't bother me in the least... except that I must still be losing hair because it does sort of itch and burn. The dermatologist gave me some foamy stuff that does seem to help.

    I assume you've got a port? I'm a weenie about needles ... so the port is the greatest. And don't forget to get a prescription for EMLA cream. You blob it on an hour before your appointment and cover it with a bandage ... and by the time your get ready for your infusion ... the port spot is numb. EMLA is the greatest!

    good luck ...

    hugs.
    teena

    Teena
    Teena,
    I have already lost my hair due to the A/C treatments. I lost my hair in clumps the day after my 2nd treatment and had my head shaved the day after that. I had a treatment every other week for 4 treatments and finished that round on 4/21. On May 7th I will start the Taxol w/Herceptin.

    The only thing I have had so far is bone and muscle pain due to the Neulasta shot but I won't need another one of those shots unless my WBC is low. This last shot was the worst. I have had no nausea thank god due to the anti-nausea pills.

    I do have a port and I have them use the freeze spray because I too am a weenie about needles. My port looks like it is coming right out of my skin and I think it is because of the tissue expanders that I have underneath it.

    I hope the rest of your treatments go well and I hope mine goes as well as yours.
    Hugs,
    Margo
  • labtech
    labtech Member Posts: 37
    #9
    tommaseena said:

    Teena
    Teena,
    I have already lost my hair due to the A/C treatments. I lost my hair in clumps the day after my 2nd treatment and had my head shaved the day after that. I had a treatment every other week for 4 treatments and finished that round on 4/21. On May 7th I will start the Taxol w/Herceptin.

    The only thing I have had so far is bone and muscle pain due to the Neulasta shot but I won't need another one of those shots unless my WBC is low. This last shot was the worst. I have had no nausea thank god due to the anti-nausea pills.

    I do have a port and I have them use the freeze spray because I too am a weenie about needles. My port looks like it is coming right out of my skin and I think it is because of the tissue expanders that I have underneath it.

    I hope the rest of your treatments go well and I hope mine goes as well as yours.
    Hugs,
    Margo

    Hi Jackie,
    He came into the
    Hi Jackie,

    He came into the room and said they were looking at my slides, im assuming from my cbc's i have done every wk and said with my type of cancer it's not have an affect. i have recieived 6 treatments with it and now nothing. they said my tumors were very small so im hoping that is the reason. i have 3 more treatments and then they will do an ultrasound to determine where im at. its just that my insurance went from blue cross from medicaid and i am wondering if they would not pay for it anylonger.


    Tracey

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