Jazzy Jan

hopeful girl 1
hopeful girl 1 Member Posts: 454
edited March 2014 in Uterine/Endometrial Cancer #1
Just wondering where you are at in your treatments?
Are you in NED right now, or was the scan you mentioned something recent for you?
Hope all is well.

I always find your posts so inspiring!

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    ME?
    I'm 15 months since my last treatment and still NED. I do have follow up appts every 4 months and scans every 6 or so.

    I still get nervous before any appts....just know it happens to the best of us as I just try to keep myself busy...especially my mind.

    How are you? Didn't you have to postpone a treatment due to numbers?

    Be positive and don't ever give up....life is what we make of it so go for it~
    Jan
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #3
    jazzy1 said:

    ME?
    I'm 15 months since my last treatment and still NED. I do have follow up appts every 4 months and scans every 6 or so.

    I still get nervous before any appts....just know it happens to the best of us as I just try to keep myself busy...especially my mind.

    How are you? Didn't you have to postpone a treatment due to numbers?

    Be positive and don't ever give up....life is what we make of it so go for it~
    Jan

    That's awesome
    Jan,

    I am so glad to hear you are NED for so long now! :) When I read a thread of another post, and you mentioned a scan that was bad, I was worried. It must have pertained to earlier during your treatment or diagnosis.

    You are correct, I was not able to have my chemo last Tuesday because my platelets were too low. I am supposed to go back tomorrow and have bloodtest again, and if counts permit get my 5th chemo.

    I have been struggling lately to keep my spirits up, ever since the counts dropped so low after 4th chemo. That scares me. And my medical team does not seem to use the shots to boost white cells so I am scared about the white cells a lot. Also I don't know if you recall from posts, but I had to have a root canal during my radiation phase of treatment (was not allowed to take care of it during chemo-and it flared up after 2nd chemo).

    Now I have an impacted wisdom tooth that is now starting to come down....and giving me discomfort. I had oral surgeon look at it today, and he feels I should proceed with chemo for now. He said he can't guarantee it won't get infected during chemo, but that it does not look infected now. He feels the cancer is a bigger issue right now. He said try to get the brush all the way back there etc. So that has me scared again, having to worry about tooth infections again, and now it is later in treatments and my counts don't like to bounce back as well. Last week my WBC came up to 2.3 (still low) and neutrophils 1.6. Do you recall what was the lowest your counts went? Also my hemaglobin was 9.

    My platelets have to come up to at least 100,000 I believe, they were 79,0000 last week, having dropped from 118,000 just the week before, which was 2 weeks after chemo. So they actually dropped more in the third week instead of coming up.

    I have been walking almost every day hoping that will lift counts, and I have gone back to adding my protein drinks again, to rebuild cells. I hope that helps.

    You are right-have to stay positive! I am just such a natural worrier it is hard right now. I go thru' phases.

    Cindy
  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    hopeful girl 1 said:

    That's awesome
    Jan,

    I am so glad to hear you are NED for so long now! :) When I read a thread of another post, and you mentioned a scan that was bad, I was worried. It must have pertained to earlier during your treatment or diagnosis.

    You are correct, I was not able to have my chemo last Tuesday because my platelets were too low. I am supposed to go back tomorrow and have bloodtest again, and if counts permit get my 5th chemo.

    I have been struggling lately to keep my spirits up, ever since the counts dropped so low after 4th chemo. That scares me. And my medical team does not seem to use the shots to boost white cells so I am scared about the white cells a lot. Also I don't know if you recall from posts, but I had to have a root canal during my radiation phase of treatment (was not allowed to take care of it during chemo-and it flared up after 2nd chemo).

    Now I have an impacted wisdom tooth that is now starting to come down....and giving me discomfort. I had oral surgeon look at it today, and he feels I should proceed with chemo for now. He said he can't guarantee it won't get infected during chemo, but that it does not look infected now. He feels the cancer is a bigger issue right now. He said try to get the brush all the way back there etc. So that has me scared again, having to worry about tooth infections again, and now it is later in treatments and my counts don't like to bounce back as well. Last week my WBC came up to 2.3 (still low) and neutrophils 1.6. Do you recall what was the lowest your counts went? Also my hemaglobin was 9.

    My platelets have to come up to at least 100,000 I believe, they were 79,0000 last week, having dropped from 118,000 just the week before, which was 2 weeks after chemo. So they actually dropped more in the third week instead of coming up.

    I have been walking almost every day hoping that will lift counts, and I have gone back to adding my protein drinks again, to rebuild cells. I hope that helps.

    You are right-have to stay positive! I am just such a natural worrier it is hard right now. I go thru' phases.

    Cindy

    You've got a lot on your plate~
    Cindy,

    The scan I was mentioning was a redo of one which found something "unknown". Turned out to be a very minor growth most of us get on our kidney. Had to have an MRI after the CT scan, but each time I have a scan they note the growth hasn't grown and just normal.

    I agree with your dentist the the cancer is so much more important. Possibly get some pain meds or what I've been told for my achy back, Aleve...try 2, twice per day. Also a friend of mine is a dental hygienist, and she has always suggested to me, rinse out my mouth with mouthwash which kills germs. Try it!!

    When your counts are down you might want to watch the germs around people...keep a bit indoors but plse don't become a hurmit. The walking each day is just so wonderful. I'm an avid workout gal so outside of 3 days after chemo I was always working out...within my energy limit BTW.

    Protein shakes will help as also got that idea from my friend who's RN in oncology. She told me from the start and during all treatments to continue with 2 shakes per day of Whey Protein....no other protein. I know some co's offer with no sugar, but that is so, so expensive....figure a little sugar won't hurt.

    Tough to be positive isn't it? I can get into the worry mode, but just try to breath in deep and read more "positive" thinking and mind-altering books...work for me!

    Best to you and keep us posted on when you start chemo again...you'll be over with the treatments in no time...stay calm!!
    Jan
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #5
    jazzy1 said:

    You've got a lot on your plate~
    Cindy,

    The scan I was mentioning was a redo of one which found something "unknown". Turned out to be a very minor growth most of us get on our kidney. Had to have an MRI after the CT scan, but each time I have a scan they note the growth hasn't grown and just normal.

    I agree with your dentist the the cancer is so much more important. Possibly get some pain meds or what I've been told for my achy back, Aleve...try 2, twice per day. Also a friend of mine is a dental hygienist, and she has always suggested to me, rinse out my mouth with mouthwash which kills germs. Try it!!

    When your counts are down you might want to watch the germs around people...keep a bit indoors but plse don't become a hurmit. The walking each day is just so wonderful. I'm an avid workout gal so outside of 3 days after chemo I was always working out...within my energy limit BTW.

    Protein shakes will help as also got that idea from my friend who's RN in oncology. She told me from the start and during all treatments to continue with 2 shakes per day of Whey Protein....no other protein. I know some co's offer with no sugar, but that is so, so expensive....figure a little sugar won't hurt.

    Tough to be positive isn't it? I can get into the worry mode, but just try to breath in deep and read more "positive" thinking and mind-altering books...work for me!

    Best to you and keep us posted on when you start chemo again...you'll be over with the treatments in no time...stay calm!!
    Jan

    5th chemo was cancelled again yesterday
    Well, my 5th chemo which was to be 9/28 was cancelled again yesterday on 10/5 due to low platelet counts, although all the counts are low. My platelets dropped below what they were last week. Last week were 79,000 and this week 68,000. My oncologist does not do chemo under 100,000.

    I am curious if everyone knows that number for neutrophils that their oncologists will not do chemo if under. Mine will do if neutrophils are 1.0--which is very low.

    Jan, thanks for all your tips. I have been drinking the protein drinks. And I am walking 30 minutes a day. As far as the mouthwash for germs, are there any with no alcohol? I read should avoid products with alcohol as they can irritate or cause mouth sores.

    Please advise.

    Hugs!
  • jazzy1
    jazzy1 Member Posts: 1,379
    #6
    hopeful girl 1 said:

    5th chemo was cancelled again yesterday
    Well, my 5th chemo which was to be 9/28 was cancelled again yesterday on 10/5 due to low platelet counts, although all the counts are low. My platelets dropped below what they were last week. Last week were 79,000 and this week 68,000. My oncologist does not do chemo under 100,000.

    I am curious if everyone knows that number for neutrophils that their oncologists will not do chemo if under. Mine will do if neutrophils are 1.0--which is very low.

    Jan, thanks for all your tips. I have been drinking the protein drinks. And I am walking 30 minutes a day. As far as the mouthwash for germs, are there any with no alcohol? I read should avoid products with alcohol as they can irritate or cause mouth sores.

    Please advise.

    Hugs!

    Oh no!
    Cindy,

    Sorry to hear about the platelet issues...that's heck!! I will say I lucked out and never had those issues but the last 1/3 of the sandwich treatments you and I are on, doc suggested neulasta shots. My 3rd chemo showed my blood counts were very low, but okay at that time for chemo. My doc was thinking ahead as knew I wanted to be done with my last 3 chemos. Remember the chemo is cummulative so that's probably why you're where you are with numbers.

    I do hear you on alcohol, as many mouthwashes do have it. I'll bet if you go to Whole Foods or some place like this, you'll find mouthwash WITHOUT alcohol. Call them if one in your area.

    Hang in there and don't be hard on yourself...this cancer is the pitts isn't it?
    Jan
  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    hopeful girl 1 said:

    5th chemo was cancelled again yesterday
    Well, my 5th chemo which was to be 9/28 was cancelled again yesterday on 10/5 due to low platelet counts, although all the counts are low. My platelets dropped below what they were last week. Last week were 79,000 and this week 68,000. My oncologist does not do chemo under 100,000.

    I am curious if everyone knows that number for neutrophils that their oncologists will not do chemo if under. Mine will do if neutrophils are 1.0--which is very low.

    Jan, thanks for all your tips. I have been drinking the protein drinks. And I am walking 30 minutes a day. As far as the mouthwash for germs, are there any with no alcohol? I read should avoid products with alcohol as they can irritate or cause mouth sores.

    Please advise.

    Hugs!

    Oh no!
    Cindy,

    Sorry to hear about the platelet issues...that's heck!! I will say I lucked out and never had those issues but the last 1/3 of the sandwich treatments you and I are on, doc suggested neulasta shots. My 3rd chemo showed my blood counts were very low, but okay at that time for chemo. My doc was thinking ahead as knew I wanted to be done with my last 3 chemos. Remember the chemo is cummulative so that's probably why you're where you are with numbers.

    I do hear you on alcohol, as many mouthwashes do have it. I'll bet if you go to Whole Foods or some place like this, you'll find mouthwash WITHOUT alcohol. Call them if one in your area.

    Hang in there and don't be hard on yourself...this cancer is the pitts isn't it?
    Jan
  • jazzy1
    jazzy1 Member Posts: 1,379
    #8
    hopeful girl 1 said:

    5th chemo was cancelled again yesterday
    Well, my 5th chemo which was to be 9/28 was cancelled again yesterday on 10/5 due to low platelet counts, although all the counts are low. My platelets dropped below what they were last week. Last week were 79,000 and this week 68,000. My oncologist does not do chemo under 100,000.

    I am curious if everyone knows that number for neutrophils that their oncologists will not do chemo if under. Mine will do if neutrophils are 1.0--which is very low.

    Jan, thanks for all your tips. I have been drinking the protein drinks. And I am walking 30 minutes a day. As far as the mouthwash for germs, are there any with no alcohol? I read should avoid products with alcohol as they can irritate or cause mouth sores.

    Please advise.

    Hugs!

    Oh no!
    Cindy,

    Sorry to hear about the platelet issues...that's heck!! I will say I lucked out and never had those issues but the last 1/3 of the sandwich treatments you and I are on, doc suggested neulasta shots. My 3rd chemo showed my blood counts were very low, but okay at that time for chemo. My doc was thinking ahead as knew I wanted to be done with my last 3 chemos. Remember the chemo is cummulative so that's probably why you're where you are with numbers.

    I do hear you on alcohol, as many mouthwashes do have it. I'll bet if you go to Whole Foods or some place like this, you'll find mouthwash WITHOUT alcohol. Call them if one in your area.

    Hang in there and don't be hard on yourself...this cancer is the pitts isn't it?
    Jan
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #9
    jazzy1 said:

    Oh no!
    Cindy,

    Sorry to hear about the platelet issues...that's heck!! I will say I lucked out and never had those issues but the last 1/3 of the sandwich treatments you and I are on, doc suggested neulasta shots. My 3rd chemo showed my blood counts were very low, but okay at that time for chemo. My doc was thinking ahead as knew I wanted to be done with my last 3 chemos. Remember the chemo is cummulative so that's probably why you're where you are with numbers.

    I do hear you on alcohol, as many mouthwashes do have it. I'll bet if you go to Whole Foods or some place like this, you'll find mouthwash WITHOUT alcohol. Call them if one in your area.

    Hang in there and don't be hard on yourself...this cancer is the pitts isn't it?
    Jan

    Platelets and 5th chemo
    Jan,

    You're so right about the cummulative effect of the chemo-I guess that's why the last ones are the hardest on the counts. Especially after radiation. Also, my radiation area was large-they did from top of thighs to a couple inches below breasts. So there was bone getting hit, and the bone marrow makes the blood cells right?

    My oncologist does not seem to use those neulasta shots-so I am really scared about going low and not having any help to boost them. But he must have his reasons-or maybe he decides case by case-maybe because of my particular surgery or something.

    I am supposed to go back again on Tuesday and get another bloodtest and if counts permit receive chemo. I am hoping my neutrophils can climb up higher in the meantime as well.
    The 4th chemo I dropped 1.3 points on neutrophils so I want to be at a number that can accomodate that much of a fall or more. I don't want to fall to zero neutrophils.

    It is my understanding they will give a platelet transfusion at 20,000. I am at 68,000.

    Yes, this cancer business is no fun!

    Thanks for your encouragement! :)

    Cindy

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