Just diagnosed with cancer

2

Comments

  • VickiCO
    VickiCO Member Posts: 917
    jenben59 said:

    Went to an Oncologist at MD Anderson for the first time
    The oncologist went over a lot of basic information and answered questions. What I wondering about is she set up a MRI and CT scans for my abdomen, chest and brain. The MRI for the brain I understand because of my previous brain tumors, but why the others? I am also set up to have a line put in my chest and I'll have to use this small pump with one of the medications running for 2 days a week and then go to MD Anderson for an IV once a week. How do you sleep with a pump and needles in your chest? After the scan and pump is installed, I start chemo on January 15th. You know, I am so scared. I don't know what's going to happen, how I'm going to physically feel, how I am going to be emotionally, am I going to be cured? If anyone can help me, I'd really appreciate it. Thank you very much.

    Sleeping with the pump
    I had a pump on 24/7 for 6 weeks. I, too, was worried about sleeping. I learned to sleep on my back. I am fortunate that I have an adjustable bed (DH & I both have reflux and it helps) so I would raise the bed, settle in and put the pump on a pillow beside me. It had a long line attached, so even if a moved around, I never had a problem. The biggest problem was remembering to grab the pump when I got up in the night to go to the bathroom! But that became routine very quickly.

    As to the CT scans, I had that before I started chemo as well. They checked my liver and pelvic area. They want to be sure they see everything going on to give you the best treatment.

    Vicki
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    jenben59 said:

    That helps, thank you.
    Maybe I'll get better and adjust to things once the chemo starts and I have a routine. So far, this is the only Web site that answers questions and gives me support. I really don't have a support system where I am staying right now. Thank you.

    It will be a whirlwind ride
    But, it will be one that will bring you back to NED "no evidence of disease"...hang on tight and roll with it. we got your back. and between all of us in here we have all the answers you need also..........keep the chin up, it will get a lot easier before long...promise....God Bless ya.......and He will.........
  • This comment has been removed by the Moderator
  • jenben59
    jenben59 Member Posts: 136 Member
    unknown said:

    This comment has been removed by the Moderator

    Have some questions, again.
    First, is it easy to knock the needle placed in your chest out, if you toss and turn a lot when you're asleep? Second, if I do, what am I supposed to do about it? Third, Does anyone have to be on an IV at the facility one day a week and on the pump? Fourth, how do oncologists decide how often you have to take the chemo and in what form? What I've read about, some people go for three days and then are off for 21 days. (There are several other "plans" as well) Some people get to take a pill. I really appreciate the help from everyone. Thank you for not making me feel stupid, too.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    jenben59 said:

    Have some questions, again.
    First, is it easy to knock the needle placed in your chest out, if you toss and turn a lot when you're asleep? Second, if I do, what am I supposed to do about it? Third, Does anyone have to be on an IV at the facility one day a week and on the pump? Fourth, how do oncologists decide how often you have to take the chemo and in what form? What I've read about, some people go for three days and then are off for 21 days. (There are several other "plans" as well) Some people get to take a pill. I really appreciate the help from everyone. Thank you for not making me feel stupid, too.

    Good Questions!
    Hey Jenben... those are all very good questions! Once you've started your chemo therapy, a lot of this just falls into place and we understand it without really thinking about it... so when the questions are posed, it takes a little thought to come up with the answers :)

    1) Naaa... the needle is pretty secure and I wouldn't worry about it too much. Once it is in the port, then they do tape it down with a big square of transparent adhesive that really does keep it secure.

    Now... having said that, of course I have to babble a personal story of mine. Me and the dog were lazing around on the bed during one of my 3 days of being on the pump, watching the finale of Canadian Idol. I noticed that the area around the adhesive was damp and checked. The needle still appeared to be in fine but there was definitely a wetness under the adhesive that was seeping through. Well, darn!! There was still 30 minutes to go of the finale for Canadian Idol... so I called my friends, Mimi and her hubby Nathan, who live in the apartment upstairs from me and said, "Hey guys... something weird is happening with the needle and port for my chemo so I thin a trip to Emergency might be called for... BUT... there's still half an hour of Canadian Idol, so how about if I meet you in the carport at 11pm??" Of course Mimi freaked out but I reassured her that we would only be sitting around Emerg for that long anyways and chances are they won't have the tv turned on to Canadian Idol ;)

    So, in answer to your question... don't freak out, but if it were to come out then you can go to your nearest hospital emerg and they can fix you up. Meanwhile, I found out from my chemo nurses that there is a shut-off valve to the port, so you could just shut that off until you got yourself to Emerg or to the chemo unit where you get your chemo hooked up.

    2) You know, the nice thing about chemotherapy is that it is therapy designed for YOU and for your cancer. We can all be very generic here and say we all have a particular cancer (IE: Colon Cancer or Rectal Cancer or even more generic, Colorectal Cancer), and yes, there are "standard" therapies for each one. BUT, your chemotherapist (usually that's your oncologist but it could be different from state to state) can take in your personal situation, your health, your age, and numerous other factors and come up with a therapy that will best benefit you. For instance... my tumour had perforated through my intestine, maybe yours hadn't. My bet is I weigh a lot more than you do... so weight would come into play as to how much chemo I would get vs you but that we'd both have the same benefit. I happen to, other than the cancer, be as healthy as a horse, have a strong heart, no other organs are affected, I don't smoke, I don't drink, blah, blah, blah. So that would be make my treatment different than say someone who is very thin, has heart disease, diabetes, smokes like a fiend and is an alcoholic. Ok, those are extremes, but you get my drift... no two people are exactly alike and thank goodness we aren't all given just one kind of treatment because we'd all react differently... yet in the old days, that was how it was done.

    3) I think I answered the question "how do oncologists decide how often and what kind of chemo you'd need" in #2, but, I'm not an oncologist so therefore don't have the training they do. Let me tell you, those oncologists are very, very special people! Not only do they have the training as to the kinds of chemo and what works best and why, they also take into account you as a person, your lifestyle, your work if you are still working, or if you aren't working, your state of mind. So many things come into play.

    4) Although this was not a question, I'll give some other advice here too... do NOT be surprised or anxious if your oncologist up and changes your treatment plan at any given time. Some people get soooo upset and make themselves depressed, when in fact, your oncologist is monitoring the plan they have put you on and if they see you are having problems with it (too sick, neuropathy, pains, whatever) then they will adjust it for you. They are thinking about what is in the best interests of YOU, not what most people can or can't tolerate. My oncologist told me at the beginning she was going to bombard me with as much as my body could take and that we would be aiming for 8 cycles every two weeks (4 hours on IV at the Cancer Clinic and then 48 hours on the portable pump). So I thought... ok, 8 cycles, I can do that! Then I also had to have 6 weeks of daily radiation.. so she changed the chemo treatment to the pill form. She said it would be easier on my system while going through the radiation since the radiation will do a fair amount of abuse to my body and energy, but she still wanted me to have chemo in my system. The pill form was a milder form but works really well in conjunction with radiation. Once the radiation was finished, it was back to the IV for four hours and the pump for 48 hours.

    You ask anyone else here on the board and they will give you either a similar routine, or a completely different one... and that's because we are all individual people with oncologists who are looking out for our best interests and not as a group as a whole :) There's also a big difference between "after surgery" chemo, "before surgery" chemo, or "Maintenance" chemo. So it really depends where people are in their journey to fight the beast :)

    Ok... do you think I could have babbled anymore??? LOL!! But if I missed a question or you come up with more... you know we are all here to do our best to answer them :) Keep those questions coming!!

    Hugggggs,

    Cheryl
  • This comment has been removed by the Moderator
  • jenben59
    jenben59 Member Posts: 136 Member
    unknown said:

    This comment has been removed by the Moderator

    If you don't mind...
    Nana B, what kinds of medicines are you on?
  • jenben59
    jenben59 Member Posts: 136 Member

    Good Questions!
    Hey Jenben... those are all very good questions! Once you've started your chemo therapy, a lot of this just falls into place and we understand it without really thinking about it... so when the questions are posed, it takes a little thought to come up with the answers :)

    1) Naaa... the needle is pretty secure and I wouldn't worry about it too much. Once it is in the port, then they do tape it down with a big square of transparent adhesive that really does keep it secure.

    Now... having said that, of course I have to babble a personal story of mine. Me and the dog were lazing around on the bed during one of my 3 days of being on the pump, watching the finale of Canadian Idol. I noticed that the area around the adhesive was damp and checked. The needle still appeared to be in fine but there was definitely a wetness under the adhesive that was seeping through. Well, darn!! There was still 30 minutes to go of the finale for Canadian Idol... so I called my friends, Mimi and her hubby Nathan, who live in the apartment upstairs from me and said, "Hey guys... something weird is happening with the needle and port for my chemo so I thin a trip to Emergency might be called for... BUT... there's still half an hour of Canadian Idol, so how about if I meet you in the carport at 11pm??" Of course Mimi freaked out but I reassured her that we would only be sitting around Emerg for that long anyways and chances are they won't have the tv turned on to Canadian Idol ;)

    So, in answer to your question... don't freak out, but if it were to come out then you can go to your nearest hospital emerg and they can fix you up. Meanwhile, I found out from my chemo nurses that there is a shut-off valve to the port, so you could just shut that off until you got yourself to Emerg or to the chemo unit where you get your chemo hooked up.

    2) You know, the nice thing about chemotherapy is that it is therapy designed for YOU and for your cancer. We can all be very generic here and say we all have a particular cancer (IE: Colon Cancer or Rectal Cancer or even more generic, Colorectal Cancer), and yes, there are "standard" therapies for each one. BUT, your chemotherapist (usually that's your oncologist but it could be different from state to state) can take in your personal situation, your health, your age, and numerous other factors and come up with a therapy that will best benefit you. For instance... my tumour had perforated through my intestine, maybe yours hadn't. My bet is I weigh a lot more than you do... so weight would come into play as to how much chemo I would get vs you but that we'd both have the same benefit. I happen to, other than the cancer, be as healthy as a horse, have a strong heart, no other organs are affected, I don't smoke, I don't drink, blah, blah, blah. So that would be make my treatment different than say someone who is very thin, has heart disease, diabetes, smokes like a fiend and is an alcoholic. Ok, those are extremes, but you get my drift... no two people are exactly alike and thank goodness we aren't all given just one kind of treatment because we'd all react differently... yet in the old days, that was how it was done.

    3) I think I answered the question "how do oncologists decide how often and what kind of chemo you'd need" in #2, but, I'm not an oncologist so therefore don't have the training they do. Let me tell you, those oncologists are very, very special people! Not only do they have the training as to the kinds of chemo and what works best and why, they also take into account you as a person, your lifestyle, your work if you are still working, or if you aren't working, your state of mind. So many things come into play.

    4) Although this was not a question, I'll give some other advice here too... do NOT be surprised or anxious if your oncologist up and changes your treatment plan at any given time. Some people get soooo upset and make themselves depressed, when in fact, your oncologist is monitoring the plan they have put you on and if they see you are having problems with it (too sick, neuropathy, pains, whatever) then they will adjust it for you. They are thinking about what is in the best interests of YOU, not what most people can or can't tolerate. My oncologist told me at the beginning she was going to bombard me with as much as my body could take and that we would be aiming for 8 cycles every two weeks (4 hours on IV at the Cancer Clinic and then 48 hours on the portable pump). So I thought... ok, 8 cycles, I can do that! Then I also had to have 6 weeks of daily radiation.. so she changed the chemo treatment to the pill form. She said it would be easier on my system while going through the radiation since the radiation will do a fair amount of abuse to my body and energy, but she still wanted me to have chemo in my system. The pill form was a milder form but works really well in conjunction with radiation. Once the radiation was finished, it was back to the IV for four hours and the pump for 48 hours.

    You ask anyone else here on the board and they will give you either a similar routine, or a completely different one... and that's because we are all individual people with oncologists who are looking out for our best interests and not as a group as a whole :) There's also a big difference between "after surgery" chemo, "before surgery" chemo, or "Maintenance" chemo. So it really depends where people are in their journey to fight the beast :)

    Ok... do you think I could have babbled anymore??? LOL!! But if I missed a question or you come up with more... you know we are all here to do our best to answer them :) Keep those questions coming!!

    Hugggggs,

    Cheryl

    Cheryl
    What kinds of meds are you on and how come you have not lost your hair? I hope this doesn't offend you. If I lose my hair, so be it...I've already lost it twice for brain surgery.
  • polarprincess
    polarprincess Member Posts: 202
    jenben59 said:

    If you don't mind...
    Nana B, what kinds of medicines are you on?

    dog?
    if you have a dog be careful- i woke up one morning and my dog had chewed the pump shoulder band thing and also a tiny hole in the tubing. I was horrified. When i am on the pump, i sleep in the couch kind of in an upright position so my needle isn't affected, and i also put the pump on a table beside me.
  • jenben59
    jenben59 Member Posts: 136 Member

    dog?
    if you have a dog be careful- i woke up one morning and my dog had chewed the pump shoulder band thing and also a tiny hole in the tubing. I was horrified. When i am on the pump, i sleep in the couch kind of in an upright position so my needle isn't affected, and i also put the pump on a table beside me.

    I have no dogs.
    I don't have dogs, but I'm living with my daughter, after the flood, and she has two cats. The concern with the cats are the litter boxes. I've read something about the cat litter boxes are not good to be around. I'm not sure why, but I think the dust from the litter can become air borne. If you know anything about this, please let me know. Thanks.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    jenben59 said:

    Cheryl
    What kinds of meds are you on and how come you have not lost your hair? I hope this doesn't offend you. If I lose my hair, so be it...I've already lost it twice for brain surgery.

    Meds
    Jenben, right now I'm not on chemo at all. I finished my 12 treatments at the end of Oct 2007. I had my right adrenal gland surgically removed at the end of June 2008 (very painful operation... I don't recommend that one as a fun summertime activity) and now I'm about to have a Lung Ablation procedure. It was scheduled for Dec 30th, but got rescheduled so it will be a week from this coming Tuesday (Jan 20). The reason for both the adrenal surgery and the lung ablation is to avoid more chemo if we can. Of course, if we have to, we will be going back on it. We thought we would have to because of the mets in the lungs, but we are a candidate for the RFA procedure which is much less invasive ;)

    BUT, when I was on chemo (5FU, Leurovin, Oxalpilatin and during radiation, the oral one that I always forget the name), I was lucky. I have very very thick hair (you can't tell in my picture because it is tied back and in a french braid at the back) so it thinned out. I lost a good third of it, but no one noticed because 1) it thinned out all over and evenly and 2) I have so much that losing a third isn't even noticeable to others, even my close friends.

    I'm the same as you though... if I were to lose it, so be it... I know it would only be temporary and then it would grow back in :)

    Hugggggs,

    Cheryl
  • msccolon
    msccolon Member Posts: 1,917 Member
    jenben59 said:

    I have no dogs.
    I don't have dogs, but I'm living with my daughter, after the flood, and she has two cats. The concern with the cats are the litter boxes. I've read something about the cat litter boxes are not good to be around. I'm not sure why, but I think the dust from the litter can become air borne. If you know anything about this, please let me know. Thanks.

    cat litter
    and the germs of the waste! Same reason you stay away from cat litter while you are pregnant! There's nothing in there you want to expose yourself to when your immunity is compromised!
    mary
  • jenben59 said:

    If you don't mind...
    Nana B, what kinds of medicines are you on?

    This comment has been removed by the Moderator
  • RuthieAnne
    RuthieAnne Member Posts: 3
    jenben59 said:

    Went to an Oncologist at MD Anderson for the first time
    The oncologist went over a lot of basic information and answered questions. What I wondering about is she set up a MRI and CT scans for my abdomen, chest and brain. The MRI for the brain I understand because of my previous brain tumors, but why the others? I am also set up to have a line put in my chest and I'll have to use this small pump with one of the medications running for 2 days a week and then go to MD Anderson for an IV once a week. How do you sleep with a pump and needles in your chest? After the scan and pump is installed, I start chemo on January 15th. You know, I am so scared. I don't know what's going to happen, how I'm going to physically feel, how I am going to be emotionally, am I going to be cured? If anyone can help me, I'd really appreciate it. Thank you very much.

    Sleeping with the pump
    I went through 12 rounds of chemo with the pump. The hardest part for me was the weight of the pump pulling on the needle inserted into the MediPort. During the day, if I wore jeans and put the belt for the pump through the belt loops, it supported the weight of the pump so well that I hardly noticed it. At night, make sure to leave enough tubing loose that you can move but not so much that it gets tangled. After a while, you won't even notice it.
  • jenben59
    jenben59 Member Posts: 136 Member
    unknown said:

    This comment has been removed by the Moderator

    To everyone that has comforted me and answered my questions
    I have good news! I thought I was to start Chemo this Thursday, but it was a doctor's visit about all my CAT scans and MRI's. Anyway, as far as the doctor can tell there is NO cancer in my liver, abdoman, lungs, or my brain! This is the first good news I've had since November. It made my day. I told my doctor about this Web site as well and how kind everyone has been. Anyway, chemo does start on Wednesday. So, I'll let you know how it is going and take any advice your willing to offer. Thank you all again for your comments and support.
  • Faith88
    Faith88 Member Posts: 55
    msccolon said:

    cat litter
    and the germs of the waste! Same reason you stay away from cat litter while you are pregnant! There's nothing in there you want to expose yourself to when your immunity is compromised!
    mary

    cat litter and chemo
    I just wanted to add to the comment about cat litter and being on chemo.
    My DH went on chemo and we were told the same thing, he shouldn't be around cat litter boxes and make sure we use disinfectants all the time, etc.
    Well, we have a cat and were not about to get rid of her or her box, so we got a covered litter box and I cleaned it (his usual job) for 6 months.
    He never had any ill effects from it, or got sick at all --flu or colds etc.
    Just wanted to add that you can live with animals and the chemo with some modifications.
    Best wishes to you.
    Faith88
  • jenben59
    jenben59 Member Posts: 136 Member
    unknown said:

    This comment has been removed by the Moderator

    Nana B
    You sound like you are doing really well after your chemo...good for you. I was tickled when I read you were making banana nut bread and blueberry bread, I really love that homemade bakery...but I had to settle for a banana and a blueberry bagel!
  • MoonDragon
    MoonDragon Member Posts: 183
    ron50 said:

    Hi,
    I was

    Hi,
    I was dx at age 48 with st3 colon ca into 6 lymph nodes. Forget the whys and concentrate on the what to dos. You will get plenty of help here. I had surgery and a year of chemo. It worked for me and on jan 22nd I start year 12 still ca free.Other paths have worked for others. The thing that all the survivors have in common is that they actively do whatever they can to beat ca. All the best for a speedy recovery and a return to good health. Ron.

    Wow, I LOVE stories like
    Wow, I LOVE stories like your's Ron. It helps me to remember that cancer is NOT an automatic death sentence, thank you!

    Jorie
  • MoonDragon
    MoonDragon Member Posts: 183
    jenben59 said:

    Is there any other types of help?
    I've got a lot of other things going on right now. I recently lost just about everything in the IKE flood and still do not have my own place to live. I moved in with my daughter who can not take off from work to help me get through however many months of chemo I'll need. After being out of work for two years for my brain surgeries I used all my savings and retirement money to just live and pay off all the medical bills. I just don't know what to do now. Is there any help out there?

    Hi Jenben,
    I'm sorry to meet

    Hi Jenben,

    I'm sorry to meet you under these circumstances, but pleased to meet you nonetheless! I echo every sentiment here, especially the part about staying off the net. I unfortunately didn't follow that advice and was a walking wreck which made recovery more difficult for me. We've all been in your shoes, one shoe style or another and we're all here for you! There's no question that we don't throw out on the table and discuss.

    I'm in remission from battle #3 and I've been in your boat financially as well. I lost my home, my children had to go and live with relatives, both my cars were repossessed, my pets went to willing friends and all my belongings were packed up and sent to storage. I went through chemo and radiation on an airmattress in a friend's spare bedroom. I was too ill to work throughout my chemo and my husband's job went belly up while I was in the hospital having my surgery. When he went to claim unemployment we found out that his employer had taken out unemployment taxes from his checks but never paid the gov't. They had no record of my husband working for the last 3 years!! When I was in the hospital, our apartment flooded and ruined all the documentation (don't ever store records in cardboard boxes! lol)that we needed to prove that he had worked. We were stuck on my disability only and have 6 kids. What a nightmare. Our credit being totally shot because of our lack of funds, it was really hard to find a place to rent after my recovery. We're just now making babysteps towards getting our lives back. One step at a time is my best recommendation. That and patience. Be patient with your body as it recovers. Love it and nurture it even though you're frustrated and feeling down over the new changes. I had to tell myself, "ok, this is my new normal" and I'm working with it. Be patient with your financial aspects and know that you'll be taken care of. We always are, in one way or another. Be patient with those who want to make you feel better, they have your best intentions at heart. I looked at my poor husband one day and shouted, "Cut the PollyAnna crap, if I want to feel angry, let me." He was only trying to help me. Most of all, love yourself and let people help you.

    We're all here for you, just ask away.

    Welcome to our group!

    Jorie
  • MoonDragon
    MoonDragon Member Posts: 183

    MD Anderson is one of the
    MD Anderson is one of the best if not the best place you can go. They will know and help you a great deal. So sorry to hear. A couple of other pieces of advice,

    get a flu shot right now
    take care of dental issues immediately before beginning chemo
    keep copies of everything in a folder
    allow others to offer help
    realize you will have great days and terrible days
    vent with people you can
    ask lots of questions and fight for yourself

    all my best
    Chip

    Notebook
    The idea of a folder was a huge help to me. I also took a notebook to every doctor's appointment as by the time I got home I was so overwhelmed by all the info and the fear that I'd forgotten what he said. Write down everything. Put your doctor's phone numbers and addresses in the front as well as all the medications you're on. This way when you need quick information, you have it at your fingertips. It also helps to have your pharmacy number in the notebook. I found that I had a foggy brain after having had 2 major surgeries in a 4 month period plus chemo. My notebook was a lifesaver at times!

    Hugs!

    Jorie