Blessed

colon2
colon2 Member Posts: 183
edited March 2014 in Colorectal Cancer #1
I am sitting here at the computer and I just want to say that i feel so blessed. I start my first round of chemo tomorrow and tonight at church , afterwards, some of my friends asked if we could have a special prayer time for me. It was so sweet, and really made me feel loved. Then my 9 year old grandson, gave me his lucky backagone(that's what it sounded like he called it)It is a small round object that transforms when it touches metal. He is really into Transformers. He told me "Grandma this is really lucky and i want you to keep it in your pocket when you go for chemo tomorrow." I really felt like crying then.
So tomorrow i will be in that chair with all my friends there in spirit and i will have a blue backagone in my pocket. I have a feeling that it may turn out alright. One can hope anyway. I will let you know how it goes.
I also feel blessed to have found this site . It has answered a lot of questions for me and it is good to talk with others who are going thru the same thing. So Thanks for the support and Good Luck with all the tests and treatments this week.
Hugs, Carletta

Comments

  • dixchi
    dixchi Member Posts: 431
    TODAY
    ....hope your chemo is going ok today.....it helps so much to
    have people around who support you....in person or online....

    Barbara
  • butterfly23
    butterfly23 Member Posts: 256
    Good Luck!
    good luck with your 1st treatment. My 1st was a good experience. I hope your's is too, we will be praying for you too!
    keep us posted!
    love,
    Karyn
  • Shayenne
    Shayenne Member Posts: 2,342

    Good Luck!
    good luck with your 1st treatment. My 1st was a good experience. I hope your's is too, we will be praying for you too!
    keep us posted!
    love,
    Karyn

    Good Luck!
    You'll be fine I have the feeling, isn't wonderful to have special prayers said in church for you? Just know you have all of our special prayers as well, and aside from the nausea thing I had with my 1st treatment, my 2nd one is coming up on Wednesday..I'm dreading it, just when I'm feeling so good too :(

    Let us know how it went when you're feeling up to it :)

    Hugsss~
    Donna
  • colon2
    colon2 Member Posts: 183
    Shayenne said:

    Good Luck!
    You'll be fine I have the feeling, isn't wonderful to have special prayers said in church for you? Just know you have all of our special prayers as well, and aside from the nausea thing I had with my 1st treatment, my 2nd one is coming up on Wednesday..I'm dreading it, just when I'm feeling so good too :(

    Let us know how it went when you're feeling up to it :)

    Hugsss~
    Donna

    so far, so good
    Well I am back at home now with the fanny pack, and so far it has been a piece of cake, They had to reposition the port just a little when hooking me up. That hurt for a second or two. Other than that I am doing great. Now, how it does later today and tomorrow may be a different story. Hopefully it will not be too bad. I think the first one will probably be ok. Donna, did you have nausea the first day or later? I hope your second treatment goes well. just curious, but did you have morning sickness a lot when pregnant? That's was one of the questions my nurse asked me. Also if I suffered from motion sickness. I only felt queasy a few times when I was pregnant the first time,never actually sick though. and only queasy 1 time the next pregnancy. I don't get motion sickness either, unless I am on the tilt a whirl.

    Hugs
    carletta
  • Shayenne
    Shayenne Member Posts: 2,342
    colon2 said:

    so far, so good
    Well I am back at home now with the fanny pack, and so far it has been a piece of cake, They had to reposition the port just a little when hooking me up. That hurt for a second or two. Other than that I am doing great. Now, how it does later today and tomorrow may be a different story. Hopefully it will not be too bad. I think the first one will probably be ok. Donna, did you have nausea the first day or later? I hope your second treatment goes well. just curious, but did you have morning sickness a lot when pregnant? That's was one of the questions my nurse asked me. Also if I suffered from motion sickness. I only felt queasy a few times when I was pregnant the first time,never actually sick though. and only queasy 1 time the next pregnancy. I don't get motion sickness either, unless I am on the tilt a whirl.

    Hugs
    carletta

    Hey Girl!
    So glad to hear it wasn't too bad for you! I was fine till the second night with the fanny pack is when I started to get very sick! Now, I've gotten queasy before, and had 4 kids, but did not have alot of morning sickness, this kind of nausea from the chemo was alot more fierce then just a "queasy" feeling, I couldn't even sleep, swallow, or anything the second night into the 3rd morning, I started to wake up more when the medicine ran it's course and the pump was finally unhooked from me, but the nausea was so bad I was crawling around the floors trying to get myself to puke, and just could barely move once I was in bed, I just laid there, feeling like I was going to die..it was just horrible, now you may not experience that, everyone is different, I was fine the first night with it I think because I was still on their anti-nausea meds, they had given me Emend and Decadon in the hospital, but when I got home I was sent with Zofrat and phenegran, which didn't work.

    Supposedly they will be giving me another anti-nausea medication and told me they promised I would not feel like that again the next time, so we'll find out Wednesday whether it works or not :)

    But no matter if you start feeling bad or not in these next few days Carletta, just remember, you will bounce back once that fanny pack is unhooked, and you WILL get better and stronger as each day goes by so you'll be stronger and at least know what to expect the next time, just make sure you report any and all side effects to the nurse also. Good luck with it!

    Hugsss to you!
    ~Donna
  • colon2
    colon2 Member Posts: 183
    Shayenne said:

    Hey Girl!
    So glad to hear it wasn't too bad for you! I was fine till the second night with the fanny pack is when I started to get very sick! Now, I've gotten queasy before, and had 4 kids, but did not have alot of morning sickness, this kind of nausea from the chemo was alot more fierce then just a "queasy" feeling, I couldn't even sleep, swallow, or anything the second night into the 3rd morning, I started to wake up more when the medicine ran it's course and the pump was finally unhooked from me, but the nausea was so bad I was crawling around the floors trying to get myself to puke, and just could barely move once I was in bed, I just laid there, feeling like I was going to die..it was just horrible, now you may not experience that, everyone is different, I was fine the first night with it I think because I was still on their anti-nausea meds, they had given me Emend and Decadon in the hospital, but when I got home I was sent with Zofrat and phenegran, which didn't work.

    Supposedly they will be giving me another anti-nausea medication and told me they promised I would not feel like that again the next time, so we'll find out Wednesday whether it works or not :)

    But no matter if you start feeling bad or not in these next few days Carletta, just remember, you will bounce back once that fanny pack is unhooked, and you WILL get better and stronger as each day goes by so you'll be stronger and at least know what to expect the next time, just make sure you report any and all side effects to the nurse also. Good luck with it!

    Hugsss to you!
    ~Donna

    another question
    Did you just get the Leucovorin and oxalipatin on one day and the 5-FU for 2 days . That is the regimen I am on. The nurse told me that some patients get those 2 drugs on 2 days each time. The Dr gave me a prescription for Decadron to take twice a day on day 2 thru 4 of chemo and also a prescription for phenegran . Hopefully they will work. I will be thinking about you on Wed, and praying that they get the right nausea meds for you this time. I can take pain a lot better than being sick.
    You are so right about just knowing that this will pass also. Just think how fast last year passed. This fall we should be through with this and feeling much better. I am planning on taking either a cruise somewhere new and exciting or going to Hawaii. Gotta dream big, right?
    Carletta
  • polarprincess
    polarprincess Member Posts: 202
    colon2 said:

    another question
    Did you just get the Leucovorin and oxalipatin on one day and the 5-FU for 2 days . That is the regimen I am on. The nurse told me that some patients get those 2 drugs on 2 days each time. The Dr gave me a prescription for Decadron to take twice a day on day 2 thru 4 of chemo and also a prescription for phenegran . Hopefully they will work. I will be thinking about you on Wed, and praying that they get the right nausea meds for you this time. I can take pain a lot better than being sick.
    You are so right about just knowing that this will pass also. Just think how fast last year passed. This fall we should be through with this and feeling much better. I am planning on taking either a cruise somewhere new and exciting or going to Hawaii. Gotta dream big, right?
    Carletta

    hi
    I hope they find a drug that works for you. I get decadron and aloxi in my infusion and i am on round 8 and have never once had nausea..guess those are what works for me
  • colon2
    colon2 Member Posts: 183

    hi
    I hope they find a drug that works for you. I get decadron and aloxi in my infusion and i am on round 8 and have never once had nausea..guess those are what works for me

    aloxi
    thats the other one they gave me at the dr today. i couldn't remember the name of it. Glad to hear that it works. So far it is working great for me too. Congrats on round 8.
    carletta
  • Shayenne
    Shayenne Member Posts: 2,342
    colon2 said:

    aloxi
    thats the other one they gave me at the dr today. i couldn't remember the name of it. Glad to hear that it works. So far it is working great for me too. Congrats on round 8.
    carletta

    I get Folfiri....
    I'll be on 12 rounds of Avastin, with Folfiri, which is 5-FU, leucovorin and Irinotecan. My onc doesn't like the Oxal, especially around the wintertime, and said she gets good results with the Folfiri/Avastin, I'm sure if this isn't working, it's something she may put me on in the future, but for now, it's every other Wednesday, twice a month with the Folfiri/Avastin.

    Decadon worked well with me in the hospital, I hope they give me something stronger, I'm dreading Wednesday already and feeling my knees knocking and that knot coming in my stomach as the day comes closer, but oh well.. at least #2 will be down, and also Carletta, on the 4th or 5th day, when you get unhooked, you will feel good again to do things, so don't think you're always going to have the nausea, I swear, when I first had my first treatment, I thought that was how I always going to feel for 6 months, and that feeling wouldn't go away...it does eventually go away, even though it took almost 6 days for my appetite to become abit normal again...I started to eat more it seems, I just am trying not to lose too much weight. I'm right now having some kind of cancer flare-up, my onc says sometimes the tumors flare up, and I'm taking a painkiller for it now, I try to only take them for those times I need it, but this time it's actually hurting when I stand :(
  • msccolon
    msccolon Member Posts: 1,917 Member
    Shayenne said:

    I get Folfiri....
    I'll be on 12 rounds of Avastin, with Folfiri, which is 5-FU, leucovorin and Irinotecan. My onc doesn't like the Oxal, especially around the wintertime, and said she gets good results with the Folfiri/Avastin, I'm sure if this isn't working, it's something she may put me on in the future, but for now, it's every other Wednesday, twice a month with the Folfiri/Avastin.

    Decadon worked well with me in the hospital, I hope they give me something stronger, I'm dreading Wednesday already and feeling my knees knocking and that knot coming in my stomach as the day comes closer, but oh well.. at least #2 will be down, and also Carletta, on the 4th or 5th day, when you get unhooked, you will feel good again to do things, so don't think you're always going to have the nausea, I swear, when I first had my first treatment, I thought that was how I always going to feel for 6 months, and that feeling wouldn't go away...it does eventually go away, even though it took almost 6 days for my appetite to become abit normal again...I started to eat more it seems, I just am trying not to lose too much weight. I'm right now having some kind of cancer flare-up, my onc says sometimes the tumors flare up, and I'm taking a painkiller for it now, I try to only take them for those times I need it, but this time it's actually hurting when I stand :(

    pain
    could be the Avastin also. It's purpose is to cut off blood supply to tumors, so it could be causing you pain. I swear I feel miscellaneous stabbing pains in my abdomen the week after received Avastin and that's what I attribute it to. It always goes away and always comes pretty much on schedule. Ask your onc on Wednesday. Of course, it never is such a pain that I feel the need for pain killers... I would definitely discuss that in more detail with the onc and/or the onc nurses when you go in on Wednesday.
    mary
  • Shayenne
    Shayenne Member Posts: 2,342
    msccolon said:

    pain
    could be the Avastin also. It's purpose is to cut off blood supply to tumors, so it could be causing you pain. I swear I feel miscellaneous stabbing pains in my abdomen the week after received Avastin and that's what I attribute it to. It always goes away and always comes pretty much on schedule. Ask your onc on Wednesday. Of course, it never is such a pain that I feel the need for pain killers... I would definitely discuss that in more detail with the onc and/or the onc nurses when you go in on Wednesday.
    mary

    Oh really??
    I never knew that Avastin could cause that, it was scaring me, I know the doctor told me about tumor flare-ups at times, (she told me that before the treatments), but I had no idea Avastin could do that as well.. it comes and goes, and I took a painkiller only because I'm just a baby when it comes to pain.. it been there for a couple hours, and it is right there in the abdomen as well! I will definitely ask my onc about that on Wednesday when I go for my next treatment.
  • Mike49
    Mike49 Member Posts: 261
    great attitude
    Great attitude and your going to come through for all of them and all of us.
  • fez1
    fez1 Member Posts: 47
    Shayenne said:

    Oh really??
    I never knew that Avastin could cause that, it was scaring me, I know the doctor told me about tumor flare-ups at times, (she told me that before the treatments), but I had no idea Avastin could do that as well.. it comes and goes, and I took a painkiller only because I'm just a baby when it comes to pain.. it been there for a couple hours, and it is right there in the abdomen as well! I will definitely ask my onc about that on Wednesday when I go for my next treatment.

    anti nausea meds around the clock
    Hey there Shayenne,
    My husband was deathly sick with FOLFIRI. He got Aloxi and Decadron, Ativan and Atropine at chemo. Then we tried all different meds. He finally got the best results from Compazine and Ativan, taken together, around the clock! I set my alarm to make sure tha he gets it during the night. He also took Decadron on days 2 and 3. We also read that slowing the infusion down to 180 minutes really helps and it did. The protocol is for a 90 minute infusion so you have to insist on slowing it down since the nurses are used to doing it over 90 minutes. I mean we say, "Please make sure that this infuses over the full 180 minutes" to each infusion nurse. We had our onc. order it that way. It really helped. Also, if this continues, there are some people who have a sensitivity to FOLFIRI and you can be tested for it. The onc will then decrease the dosage accordingly. I believe that they have not found any difference in tumor response with a decreased dosage. Ask about it. My husband also had IV fluids at home for day 2 and 3 since he couldn't drink a thing and would become dehydrated quickly. Please tell your oncologist all about the side effects. He'll help you to find a regimen to decrease them as much as possible. I've watched this and I feel for you and all chemo patients who have to endure these terrible side effects. Take care. You and everyone on this ite are in my prayers.

    Carol
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Glad it went well
    Hi, Carletta.

    I'm glad your first chemo went well. I hope it's all good from here on out. Keep us posted, and know that we are praying for you.

    *hugs*
    Gail
  • colon2
    colon2 Member Posts: 183
    tootsie1 said:

    Glad it went well
    Hi, Carletta.

    I'm glad your first chemo went well. I hope it's all good from here on out. Keep us posted, and know that we are praying for you.

    *hugs*
    Gail

    thanks
    Thanks Gail, I appreciate the prayers. I really do believe in the power of prayer.I am hoping that day 2 is good also. So far i couldn't ask for anything better. I am so glad I found this site, it really helps. I recommended it to a friend of mine tonight. her daughter has just been diagnosed with Liver cancer. She is going to the Dr on march 2, to find out more details. I will let everyone know how day 2 goes tomorrow. That's all we can do, is take it 1 day at a time.
    Carletta
  • Shayenne
    Shayenne Member Posts: 2,342
    fez1 said:

    anti nausea meds around the clock
    Hey there Shayenne,
    My husband was deathly sick with FOLFIRI. He got Aloxi and Decadron, Ativan and Atropine at chemo. Then we tried all different meds. He finally got the best results from Compazine and Ativan, taken together, around the clock! I set my alarm to make sure tha he gets it during the night. He also took Decadron on days 2 and 3. We also read that slowing the infusion down to 180 minutes really helps and it did. The protocol is for a 90 minute infusion so you have to insist on slowing it down since the nurses are used to doing it over 90 minutes. I mean we say, "Please make sure that this infuses over the full 180 minutes" to each infusion nurse. We had our onc. order it that way. It really helped. Also, if this continues, there are some people who have a sensitivity to FOLFIRI and you can be tested for it. The onc will then decrease the dosage accordingly. I believe that they have not found any difference in tumor response with a decreased dosage. Ask about it. My husband also had IV fluids at home for day 2 and 3 since he couldn't drink a thing and would become dehydrated quickly. Please tell your oncologist all about the side effects. He'll help you to find a regimen to decrease them as much as possible. I've watched this and I feel for you and all chemo patients who have to endure these terrible side effects. Take care. You and everyone on this ite are in my prayers.

    Carol

    dosage...
    You know, I never thought the rate of infusion may have something to do with it, and wish they'd send me home with an IV bag, my skin was so dry during it because I couldn't even get a bottle of water down, I think I only had a half bottle of water between day 2 and 3 with nothing to eat, nothing would go down, but I'll think of asking them that. It's supposed to be on a 48 hour pump cycle, from Wed to Friday, and it finished before the nurse even got there, in like 46 hours which I was happy, since the meds were all finished up. Thanks for those tips, I'll have to ask about it.
  • krystiesq
    krystiesq Member Posts: 240 Member
    Shayenne said:

    dosage...
    You know, I never thought the rate of infusion may have something to do with it, and wish they'd send me home with an IV bag, my skin was so dry during it because I couldn't even get a bottle of water down, I think I only had a half bottle of water between day 2 and 3 with nothing to eat, nothing would go down, but I'll think of asking them that. It's supposed to be on a 48 hour pump cycle, from Wed to Friday, and it finished before the nurse even got there, in like 46 hours which I was happy, since the meds were all finished up. Thanks for those tips, I'll have to ask about it.

    sensitivity
    My mom has an enzyme deficiency that affects how she metabolizes folfiri. THerefore she receives a lower dosage and gets it every three weeks instead of two. That way she has more time to recover.
  • dorookie
    dorookie Member Posts: 1,731 Member
    Shayenne said:

    Hey Girl!
    So glad to hear it wasn't too bad for you! I was fine till the second night with the fanny pack is when I started to get very sick! Now, I've gotten queasy before, and had 4 kids, but did not have alot of morning sickness, this kind of nausea from the chemo was alot more fierce then just a "queasy" feeling, I couldn't even sleep, swallow, or anything the second night into the 3rd morning, I started to wake up more when the medicine ran it's course and the pump was finally unhooked from me, but the nausea was so bad I was crawling around the floors trying to get myself to puke, and just could barely move once I was in bed, I just laid there, feeling like I was going to die..it was just horrible, now you may not experience that, everyone is different, I was fine the first night with it I think because I was still on their anti-nausea meds, they had given me Emend and Decadon in the hospital, but when I got home I was sent with Zofrat and phenegran, which didn't work.

    Supposedly they will be giving me another anti-nausea medication and told me they promised I would not feel like that again the next time, so we'll find out Wednesday whether it works or not :)

    But no matter if you start feeling bad or not in these next few days Carletta, just remember, you will bounce back once that fanny pack is unhooked, and you WILL get better and stronger as each day goes by so you'll be stronger and at least know what to expect the next time, just make sure you report any and all side effects to the nurse also. Good luck with it!

    Hugsss to you!
    ~Donna

    Kytrel (sp)
    Has anyone had or used Kytrel (sp) towards the end of my first round of chemo, the nausea was so bad, they gave me kytrel its a once a day pill and it really did the trick for me. I havent seem anyone post about this drug or maybe I missed it, but you might want to ask your ONC about it. It does work really well...Good Luck and hope you all feel better..

    Beth
  • msccolon
    msccolon Member Posts: 1,917 Member
    dorookie said:

    Kytrel (sp)
    Has anyone had or used Kytrel (sp) towards the end of my first round of chemo, the nausea was so bad, they gave me kytrel its a once a day pill and it really did the trick for me. I havent seem anyone post about this drug or maybe I missed it, but you might want to ask your ONC about it. It does work really well...Good Luck and hope you all feel better..

    Beth

    Kytril
    I had to go look at the box! Yes, I had it and it didn't do squat for me! Nothing worked for me until I found Emend!
    mary
  • VickiCO
    VickiCO Member Posts: 917
    dorookie said:

    Kytrel (sp)
    Has anyone had or used Kytrel (sp) towards the end of my first round of chemo, the nausea was so bad, they gave me kytrel its a once a day pill and it really did the trick for me. I havent seem anyone post about this drug or maybe I missed it, but you might want to ask your ONC about it. It does work really well...Good Luck and hope you all feel better..

    Beth

    Kytril
    Yes, Beth, Kytril is what they gave me. I took dexamethasone(sp?) 3 days, then Kytril 3 days. It worked for me! It is very expensive (8 pills was around $460) but my insurance paid it.

    Vicki