OK, now i'm freaking out

2

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  • henhill
    henhill Member Posts: 123
    edited October 2016 #22
    Port

    I never had a port for any of my chemo.  It never hurt, but ALL of my veins are now shot, can't even draw blood at all.  I wouldn;t worry aboout the first one, but I think it is better to save those veins.

  • daylady
    daylady Member Posts: 122
    Scheduling Varies...

    Hey Sweet lady, Try not to read too much into things as you move through this or you can/will drive yourself crazy.  I started chemo within a week of my post-oop visit (about two weeks after surgery, so about three weeks total).  The sooner you get into it, the sooner it will be behind you.  Do ask questions, and don't be afraid to listen to your own still small voice.  You are the one living inside your body. Eldri is right.  No one knows more about you than you. Hugs - Helen

     

  • pinky104
    pinky104 Member Posts: 574 Member
    edited October 2016 #24
    MMPeterson

    I had stage IVb UPSC.  My surgery was 5/10/10.  My chemo wasn't started until 6/11/10. I was kind of worried about waiting that long for it, especially after finding out I had the highest grade of UPSC, but it all worked out in the end.  I had a difficult surgery, with having both cancer surgery and gallbladder and appendix surgery at the same time (my CT scan had found gallstones). It took quite a while to heal from it.  Although starting chemo right away doesn't give you time to get used to the idea of having whatever stage it turns out to be, I think it's great that your doctor is so proactive to get things going so fast.  The sooner it starts, the sooner it's over.  My gyn/onc told me he has a number of patients surviving who were stage IV, so there is hope for you even if it is that high a stage.      

  • Mmpeterson
    Mmpeterson Member Posts: 124
    daylady said:

    Scheduling Varies...

    Hey Sweet lady, Try not to read too much into things as you move through this or you can/will drive yourself crazy.  I started chemo within a week of my post-oop visit (about two weeks after surgery, so about three weeks total).  The sooner you get into it, the sooner it will be behind you.  Do ask questions, and don't be afraid to listen to your own still small voice.  You are the one living inside your body. Eldri is right.  No one knows more about you than you. Hugs - Helen

     

    Hi Helen - You are right, I

    Hi Helen - You are right, I would rather get going on this so I can get it done and praying it will get everything left over.  I am going to ask my dr many questions so I can understand this a ittle more.  Maryanne

  • Mmpeterson
    Mmpeterson Member Posts: 124
    pinky104 said:

    MMPeterson

    I had stage IVb UPSC.  My surgery was 5/10/10.  My chemo wasn't started until 6/11/10. I was kind of worried about waiting that long for it, especially after finding out I had the highest grade of UPSC, but it all worked out in the end.  I had a difficult surgery, with having both cancer surgery and gallbladder and appendix surgery at the same time (my CT scan had found gallstones). It took quite a while to heal from it.  Although starting chemo right away doesn't give you time to get used to the idea of having whatever stage it turns out to be, I think it's great that your doctor is so proactive to get things going so fast.  The sooner it starts, the sooner it's over.  My gyn/onc told me he has a number of patients surviving who were stage IV, so there is hope for you even if it is that high a stage.      

    Hey Pinky - Since mine is

    Hey Pinky - Since mine is high grade (not sure stage or grade until I get path report) my dr does want me to start chemo and not delay so I am glad about that.  I worry about the stage since some lymph node involvement but there are so many later stage survivors that are thriving.  I do expect the worst but hope for the best. I get my port on Monday morning and then chemo Tues so I am relieved they could get me in to get the port done asap.  Makes me feel a little better that I will have that ready to go.  Maryanne

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Maryanne, glad they are

    Maryanne, glad they are getting you port in before chemo.  Take it one day at a time. Praying for a good outcome on the pathology report. Let us know.  trish

  • pinky104
    pinky104 Member Posts: 574 Member
    Mmpeterson

    If it's high grade, it'll probably be grade 3, which is what mine was.  Mine was considered stage IVb (the higest possible stage) because it had gone out of the pelvis.  I had it in my small intestine.  There wasn't much there, but just enough to push up the stage.  The high grade cancers I've seen mentioned on this website are what I had, UPSC (uterine papillary serous carcinoma), and MMMT (malignant mixed Mullerian tumor).  Although they're both rare and aggressive cancers, I've seen a lot more women with UPSC than MMMT on here.  I didn't have any lymph node involvement with mine, or at least none was ever found.  My cancer spread laterally, I guess.  Mine was in the uterus, both ovaries, the omentum, and, as I mentioned, the small intestine.  I'm glad you're getting your port in so early and getting your treatment started.  My biggest complaint about getting my port was that the room where it was done was sooo cold, 63 degrees.  They couldn't pile up enough warm blankets on me.  After I got my port, my biggest complaint was some discomfort from having it get hit by the seat belt.  I bought a lambswool cover for the seat belt, but even that didn't solve the problem.  I got my port put in on my right side, so it bothered me while I was riding as a passenger in our car.  If they put it in on the left side, it may bother you when you're driving.  My blood vessels were close to the surface.  Not everyone has that problem, so you may or may not feel discomfort from the seat belt. The radiologists decide which side is best based upon what the blood vessels on the right and left look like.  If your oncologist gives you carboplatin and taxol (the official name is paclitaxel), be sure to get a wig, cap, scarf or turban (if you plan to use one) soon.  Sometime between 10 and 14 days after the first chemo, you'll probably lose most or all of your hair.  I think I lost mine at 12 days out.  Some women shave it off to avoid the mess later.  Mine mostly came out in the shower, but I also had a hairy pillowcase. Expect to lose hair everywhere, including eyebrows and eyelashes.  It'll probably start coming in about a month after the end of chemo.  It comes in really soft feeling and may have a different color or texture for a while.  I found the nurses were wonderful, and other people have said the same thing about theirs in other hospitals.  I guess the ones that work in cancer centers are a special breed.  I didn't find chemo to be as bad as I expected.  I ended up short of breath halfway through my treatments, but that was probably because I'd refused the Neulasta shot.  I had a blood transfusion to remedy that, but it actually didn't make much difference.  Six months later, I was diagnosed with hemochromatosis (a genetic disease that causes the body to store too much iron), so that was causing most of my problem with the shortness of breath.  My iron level was extremely high.  I had to have blood taken out of me to remedy that problem.  It was strange to first get the transfusion, then get blood taken out of me a few months later, but it probably saved my life.  My little brother had a fatal heart attack just before I had my transfusion.  I later found out that the males on my father's side of the family had a strong history of hemochromatosis, so my brother probably passed away from having had that.  Sorry for going on so much here.  I wish you luck in your treatments.  You're well on your way.   

  • Mmpeterson
    Mmpeterson Member Posts: 124
    edited October 2016 #29
    pinky104 said:

    Mmpeterson

    If it's high grade, it'll probably be grade 3, which is what mine was.  Mine was considered stage IVb (the higest possible stage) because it had gone out of the pelvis.  I had it in my small intestine.  There wasn't much there, but just enough to push up the stage.  The high grade cancers I've seen mentioned on this website are what I had, UPSC (uterine papillary serous carcinoma), and MMMT (malignant mixed Mullerian tumor).  Although they're both rare and aggressive cancers, I've seen a lot more women with UPSC than MMMT on here.  I didn't have any lymph node involvement with mine, or at least none was ever found.  My cancer spread laterally, I guess.  Mine was in the uterus, both ovaries, the omentum, and, as I mentioned, the small intestine.  I'm glad you're getting your port in so early and getting your treatment started.  My biggest complaint about getting my port was that the room where it was done was sooo cold, 63 degrees.  They couldn't pile up enough warm blankets on me.  After I got my port, my biggest complaint was some discomfort from having it get hit by the seat belt.  I bought a lambswool cover for the seat belt, but even that didn't solve the problem.  I got my port put in on my right side, so it bothered me while I was riding as a passenger in our car.  If they put it in on the left side, it may bother you when you're driving.  My blood vessels were close to the surface.  Not everyone has that problem, so you may or may not feel discomfort from the seat belt. The radiologists decide which side is best based upon what the blood vessels on the right and left look like.  If your oncologist gives you carboplatin and taxol (the official name is paclitaxel), be sure to get a wig, cap, scarf or turban (if you plan to use one) soon.  Sometime between 10 and 14 days after the first chemo, you'll probably lose most or all of your hair.  I think I lost mine at 12 days out.  Some women shave it off to avoid the mess later.  Mine mostly came out in the shower, but I also had a hairy pillowcase. Expect to lose hair everywhere, including eyebrows and eyelashes.  It'll probably start coming in about a month after the end of chemo.  It comes in really soft feeling and may have a different color or texture for a while.  I found the nurses were wonderful, and other people have said the same thing about theirs in other hospitals.  I guess the ones that work in cancer centers are a special breed.  I didn't find chemo to be as bad as I expected.  I ended up short of breath halfway through my treatments, but that was probably because I'd refused the Neulasta shot.  I had a blood transfusion to remedy that, but it actually didn't make much difference.  Six months later, I was diagnosed with hemochromatosis (a genetic disease that causes the body to store too much iron), so that was causing most of my problem with the shortness of breath.  My iron level was extremely high.  I had to have blood taken out of me to remedy that problem.  It was strange to first get the transfusion, then get blood taken out of me a few months later, but it probably saved my life.  My little brother had a fatal heart attack just before I had my transfusion.  I later found out that the males on my father's side of the family had a strong history of hemochromatosis, so my brother probably passed away from having had that.  Sorry for going on so much here.  I wish you luck in your treatments.  You're well on your way.   

    The unknown of how I will

    The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

  • Kvdyson
    Kvdyson Member Posts: 789

    The unknown of how I will

    The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

    Ask your oncology nurses

    Ask your oncology nurses about taking Miralax or some other treatment for constipation during treatment. That is an unfortunate side effect of many of the common chemos and it is not something you want to have to deal with if you can nip it in the bud early. I took Miralax twice a day every day after a VERY bad bout of constipation during my first chemo cycle. The nurses never let me forget that I disregarded their warnings about it...

  • Mmpeterson
    Mmpeterson Member Posts: 124
    Kvdyson said:

    Ask your oncology nurses

    Ask your oncology nurses about taking Miralax or some other treatment for constipation during treatment. That is an unfortunate side effect of many of the common chemos and it is not something you want to have to deal with if you can nip it in the bud early. I took Miralax twice a day every day after a VERY bad bout of constipation during my first chemo cycle. The nurses never let me forget that I disregarded their warnings about it...

    I sure will.  I have colace

    I sure will.  I have colace and senokot left over from surgery also.  Thank you, I can use all the advice I can get. Maryanne 

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited October 2016 #32

    The unknown of how I will

    The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

    Hair Falling out

    I remember that feeling well!!!  I DID NOT want my hair to fall out but just as you were told, it happens fast.  In advance of it I cut my hair 2x the 2nd time was really short and just before my 2nd treatment I had it shaved since it was coming out so much.  I didn't want that straggly look and it helped to be in control of when it went.  Just an FYI most hospitals and cancer centers have things for sale but they also have things that were donated to them- you have to ask- they were so very sweet to me and they gave me several things to get me started.  I never did enjoy the wig :(  It was hot and scratchy for me.  I have really liked the scarves with elastic so I didn't have to tie them and the little hats. 

    I just finished chemo (taxol/carbo) on the 21 of Sept. and I already have a full head of fuzz.  I saw a little video on Youtube (yes I haunt it looking at everything ahead of time from the surgery, port install, hair loss, 1st chemo, hair growth etc.) and every 10 days she got more and more hair! 

    I go without cover at home all the time- it felt odd at first but I got over it.  I haven't gone out that way and probably wont.  I admire the ladies who do and can but my head, ears and neck get so cold.  Now it's raining so better to keep a lid ;)   I didn't think I could do it but I did and YOU CAN- I promise you!  Try and have fun with it.

    I'm thinking about you (((HUGS)))

  • Mmpeterson
    Mmpeterson Member Posts: 124
    Nellasing said:

    Hair Falling out

    I remember that feeling well!!!  I DID NOT want my hair to fall out but just as you were told, it happens fast.  In advance of it I cut my hair 2x the 2nd time was really short and just before my 2nd treatment I had it shaved since it was coming out so much.  I didn't want that straggly look and it helped to be in control of when it went.  Just an FYI most hospitals and cancer centers have things for sale but they also have things that were donated to them- you have to ask- they were so very sweet to me and they gave me several things to get me started.  I never did enjoy the wig :(  It was hot and scratchy for me.  I have really liked the scarves with elastic so I didn't have to tie them and the little hats. 

    I just finished chemo (taxol/carbo) on the 21 of Sept. and I already have a full head of fuzz.  I saw a little video on Youtube (yes I haunt it looking at everything ahead of time from the surgery, port install, hair loss, 1st chemo, hair growth etc.) and every 10 days she got more and more hair! 

    I go without cover at home all the time- it felt odd at first but I got over it.  I haven't gone out that way and probably wont.  I admire the ladies who do and can but my head, ears and neck get so cold.  Now it's raining so better to keep a lid ;)   I didn't think I could do it but I did and YOU CAN- I promise you!  Try and have fun with it.

    I'm thinking about you (((HUGS)))

    I am going to the Look Good

    I am going to the Look Good Feel Better workshop on the 27, 2 days after chemo.  It is supposed to be a fantastic workshop to learn how to deal with makeup and hair to make you feel better while you go through this process.  I am looking forward to it and hopefully the side effects of chemo will hold off for a day or two so I can go.  From what I understand day 3 & 4 is when the side effects hit the hardest.  Thank you Nellasing for the hugs!!  Maryanne

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited October 2016 #34

    I am going to the Look Good

    I am going to the Look Good Feel Better workshop on the 27, 2 days after chemo.  It is supposed to be a fantastic workshop to learn how to deal with makeup and hair to make you feel better while you go through this process.  I am looking forward to it and hopefully the side effects of chemo will hold off for a day or two so I can go.  From what I understand day 3 & 4 is when the side effects hit the hardest.  Thank you Nellasing for the hugs!!  Maryanne

    I went to the Look Good Feel

    I went to the Look Good Feel Better workshop and had a lot of fun.  I don't wear a lot of makeup, but it was great to personally connect with other women dealing with cancer and there was a lot of laughter.  And they did share a lot of good tips.  I think you'll enjoy it.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited October 2016 #35
    I pretty much stuck with

    I pretty much stuck with scarves rather than wigs or hats. I got pretty good at tying them (with the help of a lot of YouTube videos) and they really ended up being a bit of a fashion statement. The picture I have posted right now is my hair 4.5 months after the end of frontline and after one hair cut.

    The process of losing my hair the first time was pretty traumatic but once I shaved it off, it was actually quite liberating. It grew back during the radiation part of my sandwich treatment then fell out again once chemo started up again. It was more of a pain in the butt the second time and not really emotional at all.

    The good news, if there is any good news, is that it grows back and you get to find out what kind of new hair you'll get. Mine is coming in much more wavy than the original and I'm kind of digging it. ;)

    Hang in there, Maryanne. You're going to do fine!

     

  • Mmpeterson
    Mmpeterson Member Posts: 124
    edited October 2016 #36
    Kvdyson said:

    I pretty much stuck with

    I pretty much stuck with scarves rather than wigs or hats. I got pretty good at tying them (with the help of a lot of YouTube videos) and they really ended up being a bit of a fashion statement. The picture I have posted right now is my hair 4.5 months after the end of frontline and after one hair cut.

    The process of losing my hair the first time was pretty traumatic but once I shaved it off, it was actually quite liberating. It grew back during the radiation part of my sandwich treatment then fell out again once chemo started up again. It was more of a pain in the butt the second time and not really emotional at all.

    The good news, if there is any good news, is that it grows back and you get to find out what kind of new hair you'll get. Mine is coming in much more wavy than the original and I'm kind of digging it. ;)

    Hang in there, Maryanne. You're going to do fine!

     

    Thank you!  I am anxious to

    Thank you!  I am anxious to get this all started so I can have a somewhat "new normal" kind of life.  Maryanne

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    I went with hats and caps.

    I went with hats and caps.  Had a wig and,didn't like it at all.  Tried the scarves, they weren't for me.  I was teaching school when I,started this rollercoaster ride and I got,some animal hats that my students loved.  Still use them and have,quite the collection of different colored hats and caps.  My cancer center has many hats that people knit for cancer patients to take free of charge.  Get a soft knit or cloth hat to wear at night.  Bald heads get cold quickly.  The American Cancer Society sells some really slot caps that go under wigs.  They make a wig much more comfortable.

    Hugs and prayers, Lou Ann

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited October 2016 #38
    I wore everything...  I had a

    I wore everything...  I had a wig, many scarves, knit caps, and sometimes I went commando.  I bought the wig before I started chemo, and then gradually added other headware.  The pre-tied scarves were probably my favorite, and I wore them most of the time.  Helped protect my head from the sun, as it was late summer here and still pretty warm when I started chemo.  I generally wore the wig for social occasions.  It does take a while to get the hang of scarves if you're not using the pre-tied ones, but like Kim said, there are some great videos on YouTube.  In fact, I wore one style I had found to my Look Good Feel Better workshop and the women running it wanted to know how I did it!

  • janaes
    janaes Member Posts: 799 Member
    edited October 2016 #39
    We all do this diferently

    We all do this diferently dont we.   For me my wig was all i wore.  I guess i stuck with that because 23 years ago i did the same thing.  I know we all do it differently and thats the great thing.  It wasnt until about two weeks ago that i took my wig off in front of my daughters friend.  I think my situation has some to do with my kids and how they feel about things.  Its was just easier for all of us to just keep things as normal as possible and that is how we did that.  my daughters friend had a neighbor who had cancer and my daughter saw her with her wig off and talked to her and so one day this friend was over at my house and we all decided that taking my wig off would be okay.  it felt nice to do it.  My daughter was a bit reluctant but fianally was okay. 

  • Mmpeterson
    Mmpeterson Member Posts: 124
    So I have a question, many

    So I have a question, many said to cut your hair short so it's not so traumatic and others say they shaved their heads because it was too hard for them to see the clumps coming out.  I have below the shoulder hair so I am not sure the most "non traumatic" way to do this.  Maryanne

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited October 2016 #41
    I had my hair cut short at

    I had my hair cut short at the beginning of chemo and when it started to fall out my husband gave me a buzz job.  I believe that Cost Cutters give free hair cuts to,cancer patients.  My husband decided at the fourth time that he wasn't very good at barber skills so,he,took me there for the buzz job.  I know,some that took a,few,freinds along and made it into a little party.

    Hugs and,prayers, Lou Ann

    i do not know,where all the comas are coming from!!!!!!