Possible Bad News

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  • Heeran
    Heeran Member Posts: 171
    #22
    hi
    Hi, what a roller coaster ride you've gone through. I will keep my fingers crossed, keep you in my thoughts and prayers for good news.
  • JimboC
    JimboC Member Posts: 264
    #23
    casp42 said:

    Jimbo,
    I'm keeping you in
    Jimbo,

    I'm keeping you in thoughts and prayers. Dr. Luketich is a wonderful dr. and I'm sure he will come up with a plan. What day are you headed to Pittsburgh? Where are you staying?

    Prayers to you,

    Carolyn

    Thanks Carolyn, we are
    Thanks Carolyn, we are heading up Monday and staying at Family House (hopefully Shadyside). We absolutely love Dr. Luketich and the whole team up there.
  • Ginny_B
    Ginny_B Member Posts: 532
    #24
    Jim, so glad the found
    Jim, so glad the found something to focus on. Stay cheerful and positive! (You always seem to be.)

    I am going to follow this closely as my mom has "suspicious" nodes and they're where they can't get to. It was explained to me and I understood, but now I can't repeat what I understood. I have severe brain damage I guess.

    Mom just finished 2 days of rads and today marks 4 days of chemo. She's much better today than yesterday, however, throwing up because of chemo most likely.

    Tomorrow we start 5 straight days of rads. The chemo is a 24/7 drip of 5FU.

    Best of luck to you and positive thoughts going your way.
    Ginny
  • JimboC
    JimboC Member Posts: 264
    #25
    Ginny_B said:

    Jim, so glad the found
    Jim, so glad the found something to focus on. Stay cheerful and positive! (You always seem to be.)

    I am going to follow this closely as my mom has "suspicious" nodes and they're where they can't get to. It was explained to me and I understood, but now I can't repeat what I understood. I have severe brain damage I guess.

    Mom just finished 2 days of rads and today marks 4 days of chemo. She's much better today than yesterday, however, throwing up because of chemo most likely.

    Tomorrow we start 5 straight days of rads. The chemo is a 24/7 drip of 5FU.

    Best of luck to you and positive thoughts going your way.
    Ginny

    I do always try to remain
    I do always try to remain positive. I really believe it helps in the healing process. Tell your Mom to hang in there. The 5FU (appropriately named) is tough. I did 18 weeks of it total and the nausea got tough at times. By the time it was over, I was on Zofran, Compazine, Phenegrin and Ativan and they did help tremendously. Be sure to let her oncologist know. I told mind once that I had some problems with nausea over the weekend and he got upset that I didn't call him. Nausea is something that they can control rather well these days and he felt that there is no reason for us to suffer from it. Please give all my best to your Mom and you as well. ;)
  • NikiMo
    NikiMo Member Posts: 342
    #26
    Ginny_B said:

    Jim, so glad the found
    Jim, so glad the found something to focus on. Stay cheerful and positive! (You always seem to be.)

    I am going to follow this closely as my mom has "suspicious" nodes and they're where they can't get to. It was explained to me and I understood, but now I can't repeat what I understood. I have severe brain damage I guess.

    Mom just finished 2 days of rads and today marks 4 days of chemo. She's much better today than yesterday, however, throwing up because of chemo most likely.

    Tomorrow we start 5 straight days of rads. The chemo is a 24/7 drip of 5FU.

    Best of luck to you and positive thoughts going your way.
    Ginny

    Nausea meds
    Hi Ginny,

    I just want to give some advice from someone who has been there done that! My husband was very ill last week from chemo, he is having post-op chemo and it has been tough. He no longer has the normal plumbing (had his esophajectomy) so he cannot vomit, but if he could he would have been all last week. I would strongly urge you to call your Mom's medical team and let them know what is happening. It seems to me that you have to ask them for stronger nausea meds, also daily hydration via and IV will probably make mom feel much better! I watched my husband suffer for a week before I realized that he doesn't have to suffer with chemo, not with modern medical intervention.

    Hope your mom feels better soon.

    Jimbo,

    Sorry to hi-jack your post. You are in my thoughts, please let us know what Dr. L says.

    Niki
  • casp42
    casp42 Member Posts: 79
    #27
    JimboC said:

    Thanks Carolyn, we are
    Thanks Carolyn, we are heading up Monday and staying at Family House (hopefully Shadyside). We absolutely love Dr. Luketich and the whole team up there.

    My dad, mom and sister are
    My dad, mom and sister are there, staying @Shadyside. My dad is hoping they will leave on Weds., my sister name is Deanna! I've told her all about her, she hangs out in the kitchen a lot. Hope you get to meet them.

    Carolyn
  • Ginny_B
    Ginny_B Member Posts: 532
    #28
    NikiMo said:

    Nausea meds
    Hi Ginny,

    I just want to give some advice from someone who has been there done that! My husband was very ill last week from chemo, he is having post-op chemo and it has been tough. He no longer has the normal plumbing (had his esophajectomy) so he cannot vomit, but if he could he would have been all last week. I would strongly urge you to call your Mom's medical team and let them know what is happening. It seems to me that you have to ask them for stronger nausea meds, also daily hydration via and IV will probably make mom feel much better! I watched my husband suffer for a week before I realized that he doesn't have to suffer with chemo, not with modern medical intervention.

    Hope your mom feels better soon.

    Jimbo,

    Sorry to hi-jack your post. You are in my thoughts, please let us know what Dr. L says.

    Niki

    Ok. I didn't know this could
    Ok. I didn't know this could be avoided. I will call Oncology nurse tomorrow and see what they can prescribe. Mom gets mad when I get her drugs through a pharmacy. She wants me to do Mail Order!
  • casp42
    casp42 Member Posts: 79
    #29
    JimboC said:

    Thanks Carolyn, we are
    Thanks Carolyn, we are heading up Monday and staying at Family House (hopefully Shadyside). We absolutely love Dr. Luketich and the whole team up there.

    My dad, mom and sister are
    My dad, mom and sister are there, staying @Shadyside. My dad is hoping they will leave on Weds., my sister name is Deanna! I've told her all about her, she hangs out in the kitchen a lot. Hope you get to meet them.

    Carolyn
  • Ginny_B
    Ginny_B Member Posts: 532
    #30
    NikiMo said:

    Nausea meds
    Hi Ginny,

    I just want to give some advice from someone who has been there done that! My husband was very ill last week from chemo, he is having post-op chemo and it has been tough. He no longer has the normal plumbing (had his esophajectomy) so he cannot vomit, but if he could he would have been all last week. I would strongly urge you to call your Mom's medical team and let them know what is happening. It seems to me that you have to ask them for stronger nausea meds, also daily hydration via and IV will probably make mom feel much better! I watched my husband suffer for a week before I realized that he doesn't have to suffer with chemo, not with modern medical intervention.

    Hope your mom feels better soon.

    Jimbo,

    Sorry to hi-jack your post. You are in my thoughts, please let us know what Dr. L says.

    Niki

    Forgot to mention... she's
    Forgot to mention... she's taking Ondansetron HCL 4mg Tab every 8 hours for nausea.

    Also, is there anything (a pill or ???) that combats the fatigue? Tomorrow she starts days 3 through 7 of 30 days of Rads (excluding weekends).

    Thank you -- Sorry, Jim for interloping on your thread! With all that's going on with Lee, I didn't want to inquire about nausea and fatigue.

    Ginny
  • NikiMo
    NikiMo Member Posts: 342
    #31
    Ginny_B said:

    Ok. I didn't know this could
    Ok. I didn't know this could be avoided. I will call Oncology nurse tomorrow and see what they can prescribe. Mom gets mad when I get her drugs through a pharmacy. She wants me to do Mail Order!

    I didn't realize it either!
    Hi Ginny,

    Hope I wasn't too forceful in my urging, I just know how horrible it is to watch our loved ones suffer, and fortunately sever nausea can be avoided for most. My husband was on zofran, ativan, and compozene. The nurse prescribed dexamethasone (which also stimulates appetite if that is an issue) and kytril. We got rid of the zofran as it doesn't appear to work for him. So now his nausea regimen is....every eight hours dexamethasone, kytril, and ativan, four hours after that compozene...repeat cycle. Also I think that hydration was the real thing that kicked the nausea. Our insurance covered Jeff getting the infusions at home, a nurse came out and instructed us for three days and now I am able to hook him up myself. The iv goes into a needle they placed in his port, then I just hook him to the pump. Jeff felt better after the first infusion. The home nurse said that she wished more chemo patients were given daily hydration. It is very hard for cancer patients to get the 2 quarts a day that their body needs, she said it is worse for esophageal patients.

    Hope this information helps!!

    Niki
  • NikiMo
    NikiMo Member Posts: 342
    #32
    Ginny_B said:

    Forgot to mention... she's
    Forgot to mention... she's taking Ondansetron HCL 4mg Tab every 8 hours for nausea.

    Also, is there anything (a pill or ???) that combats the fatigue? Tomorrow she starts days 3 through 7 of 30 days of Rads (excluding weekends).

    Thank you -- Sorry, Jim for interloping on your thread! With all that's going on with Lee, I didn't want to inquire about nausea and fatigue.

    Ginny

    Dexamethasone!
    Hey Ginny,

    Dexamethasone is a steroid it will increase appetite and can help with fatigue, the nurse said for Jeff not to take that pill after 4pm or he won't sleep. Also sounds like mom is dehydrated. Here are the common side affects from dehydration. Interestingly one sign is nausea which most of us would attribute to the chemo...it is all a viscious cycle. As a note ondansetron (zofran) did nothing to help my husband this time around..he is also on 5fu. I would ask for different meds or meds to go along with the zofran. For his first round of chemo he used zofran and ativan together every eight hours, four hours later compozene...repeat cycle.

    As the level of water loss increases, more symptoms can become apparent. The following are further signs and symptoms of dehydration.

    Dry mouth

    The eyes stop making tears

    Sweating may stop

    Muscle cramps

    Nausea and vomiting

    Heart palpitations

    Lightheadedness (especially when standing)

    Weakness

    Decreased urine output
  • JimboC
    JimboC Member Posts: 264
    #33
    Ginny_B said:

    Forgot to mention... she's
    Forgot to mention... she's taking Ondansetron HCL 4mg Tab every 8 hours for nausea.

    Also, is there anything (a pill or ???) that combats the fatigue? Tomorrow she starts days 3 through 7 of 30 days of Rads (excluding weekends).

    Thank you -- Sorry, Jim for interloping on your thread! With all that's going on with Lee, I didn't want to inquire about nausea and fatigue.

    Ginny

    Shoot Ginny, this isn't my
    Shoot Ginny, this isn't my thread, it's all of ours. I would have to second what Nikki said about hydration. When I was at my worst, I did get some hydration and it helped as well. At one point, every couple of hours I was taking a pill for the nausea. Even if she doesn't feel like she needs it, have her take her meds. Nausea, like pain is easier to keep under control than get under control.

    As for the fatigue, ask about clinical studies. I was offered one involving Ginko I believe but I had to give up pain meds in order to participate. At the time, I had just experienced a couple of bad pain episodes so I declined.
  • TerryV
    TerryV Member Posts: 887
    #34
    Ginny_B said:

    Forgot to mention... she's
    Forgot to mention... she's taking Ondansetron HCL 4mg Tab every 8 hours for nausea.

    Also, is there anything (a pill or ???) that combats the fatigue? Tomorrow she starts days 3 through 7 of 30 days of Rads (excluding weekends).

    Thank you -- Sorry, Jim for interloping on your thread! With all that's going on with Lee, I didn't want to inquire about nausea and fatigue.

    Ginny

    Nausea meds....
    I know Ondansetron, but I know it as Zofran. He had to take Compezine in tandem with Zofran. Once the nausea took hold Zofran alone wasn't enough.....

    Dexamethazone (Emend) might help with fatigue as well as dealing with the nausea and adding an element of "gee I'm hungry" to the mix. Steroids should help there.

    Compezine and the Dexamethazone were our big favorites. Ask for what you need when you need it. It's not possible to wait for mail order meds. Not when minutes are so important!

    Really though sleep is best. It gives the body needed downtime. Nick had about a 2 hour nap after radiation each day. He was good for no more than 1 hour immediately following rads, then needed to go down and go down quickly. He was shot for the next day if he didn't get that downtime.

    I've got to agree with Niki. Nick did best when he was well hydrated. He was drinking 5 34oz mugs of water daily during chemo round 1. That was a breeze. Chemo round 2 was a different story. He maybe drank 1 1/2 - 2 mugs daily. Chemo round 2 was much harder on him.

    All our love and concern!

    Terry

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