my first chemo week

tesslee
tesslee Member Posts: 97
edited March 2014 in Colorectal Cancer #1
well today is the first day i've felt well enough to post here. i've been sick all week. started chemo on tuesday with the following drugs,5-FU, wellcovorin or leucovorin, and oxaliplatin or eloxatin. next time he is adding avastin.

i was told to bring a lunch with me for the first day of chemo. i did and i ate most of it. shortly thereafter i got nauseous. i asked for vomit can and the nurse told me i shouldn't be getting sick as she hadn't even turned the drug on yet and proceeded to do so. one bag was empty and she turned the other bag on. that day and early into the morning i was very sick, nauseated. the home nurse came and hooked up the pump to me when i got home.

next day, i had no appetite, but forced myself to eat something for breakfast. it was thrown back up later that day and had nauseau the rest of day.

third day, ate two strawberries, a couple blueberries and some gaterade. threw all up. nauseous rest of day, nurse comes and unhooks me from pump and says i shouldn't be this sick. by now i'm tired of people telling me i shouldn't be sick cause i am.

friday, ate very little, threw it up again. nauseous entire day.

today ate two strawberries and an apple, threw up entire apple, have not ate anything else. was nauseous earlier today but feel better now. and that may be the ginger i have been sucking on all afternoon. i feel like i cannot eat anything and besides that i have no appetite at all.

about one week after surgery i started throwing up and not being able to eat (surgery was mar 26). they put me on fenegran, caspasin, and nexium. none worked. i also would get low grade temps with chills in the evenings.

about two weeks after surgery i had an endoscopy from the upper gi to the stomach. everything looked okay except the stomach was inflammed and they did two biopsies on it. which showed nothing.

i'm worried, cause i'm very weak, not hungry, and don't want to eat. i'm tired of throwing up or laying down feeling nauseous. my cbc bloodwork showed my hemoglobin at 11.6 which is normal low.

if anyone has any ideas i've love to hear them. the only other side effects so far are tightened throat and cannot drink cold drinks. oh and my facial skin feels like it wants to peel.
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Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    I'm sorry you are feeling so sick
    and it sucks that they keep telling you that you shouldn't be; dammmmit I AM! I'm glad the ginger helped, a lot of people swear by it. You were having nausea before chemo even started, after surgery, so obviously they never resolved the original cause! What kind of surgery did you have, the standard resection? I would definitely want an answer to that, maybe a scan to check for blockages? I hope you get to feeling better real soon!
    mary
  • C Dixon
    C Dixon Member Posts: 201
    Anti-nausea meds
    Are they giving you anti-nausea meds before they start the chemo? Also, you can ask for Emend pills. I didn't have to take them but I know they have helped others tremendously. Ginger helps nausea if you start taking the extract a few days before chemo. Have you called your doc to tell him what a rough time your having? I'm sorry this is happening.

    I know when I was on what you are currently taking the worst rounds for me were the first two. Things got better after that. I'm not saying it was a walk in the park but it did get better as my body adjusted.

    Catherine
  • abrub
    abrub Member Posts: 2,174 Member
    Nausea
    You need to ask for Emend, and to insist that they give you Zofran, or some other anti-nauseant. It's also been shown that 2 500 mg capsules of ginger/day enhances the effects of the anti-nausea drugs.

    I think I had Emend for 3 days, starting the morning of Day 1; Aloxi in my infusion, and Ativan as well, infused towards the end of the infusion. I had Zofran at home, which I couldn't take for 48 hours because of the Aloxi, but there are other meds that can help you deal with the nausea.

    I'm sure others will pipe in with recommendations as well.

    Keep your hands and feet well moisturized during this, and rinse your mouth frequently with salt/baking soda solution to avoid mouth sores. It's no fun, but we do get through it.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Tess,
    Congratulations on

    Tess,

    Congratulations on completing your first chemo treatment. Sorry it has been tough. Foods I find a little easier to handle after treatment include rice, pasta, soups, and then whatever appeals to me at the time. I find straight water hard to handle for several days after chemo, but anything with a little lemon flavour is good. Lately I have taken to milk, chocolate flavouring + ice mixed in a food processor - not good for people on oxy but I am not on that. A lot of people have said they find yogurt good after treatments. It's a bit of try + see what works for you. Good luck!
  • tesslee
    tesslee Member Posts: 97
    msccolon said:

    I'm sorry you are feeling so sick
    and it sucks that they keep telling you that you shouldn't be; dammmmit I AM! I'm glad the ginger helped, a lot of people swear by it. You were having nausea before chemo even started, after surgery, so obviously they never resolved the original cause! What kind of surgery did you have, the standard resection? I would definitely want an answer to that, maybe a scan to check for blockages? I hope you get to feeling better real soon!
    mary

    thank you Mary
    no they never resolved the original cause and that does upset me. cause i was asked twice by the chemo nurse and the home care nurse if it was the chemo making me sick. well i don't know that. but maybe it is not the chemo since i'm still sick now. trying to figure this stuff out can drive you crazy.

    my surgery, i had total hysterectomy with partial bowel removed. i now have an ostomy bag. i was told by my onc that my cancer started as an ovarian cancer, (both ovaries were size of grapefruits), reverted back to a stem cell and changed to a colon cancer. the cancer attacked from the outside and is an aggressive one. signet ring cell. was also told that a colonoscopy would have not detected the cancer. i will be going for bloodwork monday and will be talking about this to someone and make them listen to me. i can't continue this. thanks for the get well.
  • vhtqm1
    vhtqm1 Member Posts: 107
    ugh!!!!nausea and vomiting...
    i never seem to understand why sometimes the oncology staff doesn't have answers and or seem somewhat caught offguard with symptoms/side effects one is having. sometimes this coctail of drugs your on can shock the digestive system. it seems some patients have explained they feel there digestive tract is in slow motion one moment and not allowing the body to absorb nutrients the next. anyway the slowing down of digestion may be something your experiencing? so nausea and or vomiting could be the reaction? have you tried having soups for meals. i'm lucky, even though i'm a bachelor i have many who make home made soups for me. it seems to help with the same symptoms your having? i also during the time my side effects are like what your experiencing will have protein shakes at the ready. otherwise there are medications like Compezine and or Atavin that could help also? hope this helps?

    ed
  • tesslee
    tesslee Member Posts: 97
    AnneCan said:

    Tess,
    Congratulations on

    Tess,

    Congratulations on completing your first chemo treatment. Sorry it has been tough. Foods I find a little easier to handle after treatment include rice, pasta, soups, and then whatever appeals to me at the time. I find straight water hard to handle for several days after chemo, but anything with a little lemon flavour is good. Lately I have taken to milk, chocolate flavouring + ice mixed in a food processor - not good for people on oxy but I am not on that. A lot of people have said they find yogurt good after treatments. It's a bit of try + see what works for you. Good luck!

    i love you guys
    thanks for all the help and suggestions. i'm only going to address the emend right now. when i went back for blood work on wednesday i asked for amend. they phoned in a prescription for me. my cost - 191.00. BCBS cost is over 900. that would be almost 400 a month.

    can't afford it.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    abrub said:

    Nausea
    You need to ask for Emend, and to insist that they give you Zofran, or some other anti-nauseant. It's also been shown that 2 500 mg capsules of ginger/day enhances the effects of the anti-nausea drugs.

    I think I had Emend for 3 days, starting the morning of Day 1; Aloxi in my infusion, and Ativan as well, infused towards the end of the infusion. I had Zofran at home, which I couldn't take for 48 hours because of the Aloxi, but there are other meds that can help you deal with the nausea.

    I'm sure others will pipe in with recommendations as well.

    Keep your hands and feet well moisturized during this, and rinse your mouth frequently with salt/baking soda solution to avoid mouth sores. It's no fun, but we do get through it.

    nausea
    On my first onc visit prior to Chemo my Doc wrote out Rx's for Zofran, Ativan, and Phenergan.Zofran is fast acting. Phenergan works well for me when taking pain meds, and Ativan is good too but have a bed ready to jump into because it will make you sleepy.

    I have never vomited with chemo but have had a queasy stomach from time to time so I still have lots of anti-nausea meds in the drawer.

    If you have inflammation in your stomach did they put you on something like Prilosec or Zantac?

    You need to address these problems with your Doc.

    Hope things get better for you.

    -Pat
  • tesslee
    tesslee Member Posts: 97
    vhtqm1 said:

    ugh!!!!nausea and vomiting...
    i never seem to understand why sometimes the oncology staff doesn't have answers and or seem somewhat caught offguard with symptoms/side effects one is having. sometimes this coctail of drugs your on can shock the digestive system. it seems some patients have explained they feel there digestive tract is in slow motion one moment and not allowing the body to absorb nutrients the next. anyway the slowing down of digestion may be something your experiencing? so nausea and or vomiting could be the reaction? have you tried having soups for meals. i'm lucky, even though i'm a bachelor i have many who make home made soups for me. it seems to help with the same symptoms your having? i also during the time my side effects are like what your experiencing will have protein shakes at the ready. otherwise there are medications like Compezine and or Atavin that could help also? hope this helps?

    ed

    hi Ed
    i tried to eat a bowl of vegetable soup and couldn't get even a bite down. i'm not sure about the slowing down of digestion. my ostomy bag has filled several times with liquid so i guess i have diahrea(sp). and i thought of the shakes, but can't do the cold now.

    oh and thanks so much for the ginger information.
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    tesslee said:

    i love you guys
    thanks for all the help and suggestions. i'm only going to address the emend right now. when i went back for blood work on wednesday i asked for amend. they phoned in a prescription for me. my cost - 191.00. BCBS cost is over 900. that would be almost 400 a month.

    can't afford it.

    BC/BS
    My Zofran came with an original price at Walgreen's for $399.99. Blue Cross allowed about $45.00 and that is what I had to pay. Zofran is good. Phenergan cost less than $10.00...only thing is that it can give you a slight sedation effect. Ativan cost very little...less than $10 but it will sedate you.Of course BC/BS demands that you get generics whenever possible..

    Try nibbling soda crackers. You must not get dehydrated!
  • abrub
    abrub Member Posts: 2,174 Member
    tesslee said:

    thank you Mary
    no they never resolved the original cause and that does upset me. cause i was asked twice by the chemo nurse and the home care nurse if it was the chemo making me sick. well i don't know that. but maybe it is not the chemo since i'm still sick now. trying to figure this stuff out can drive you crazy.

    my surgery, i had total hysterectomy with partial bowel removed. i now have an ostomy bag. i was told by my onc that my cancer started as an ovarian cancer, (both ovaries were size of grapefruits), reverted back to a stem cell and changed to a colon cancer. the cancer attacked from the outside and is an aggressive one. signet ring cell. was also told that a colonoscopy would have not detected the cancer. i will be going for bloodwork monday and will be talking about this to someone and make them listen to me. i can't continue this. thanks for the get well.

    Question regarding your diet...
    After my resection, I was on a low residue diet for about 8 weeks. That would definitely exclude things like raw fruits and vegies.

    Also, some of the things you are describing regarding your cancer sound like my appendix cancer - tumors around the ovaries and scattered throughout my belly, but a form of colorectal cancer that did not appear in my colonscopy 6 weeks earlier. My cancer was found during a "routine" hysterectomy for odd fibroids, and was not ovarian cancer. I subsequently had my bowel resected in 3 places, fortunately without an ostomy (Bless you, Dr. Paty!)

    Get the details on the pathology, and if it is appendiceal in origin, you will need to see a specialist who knows that kind of cancer.

    By the way, the systemic chemo for appendix cancer is the same as for colon cancer - I had the same chemo as you are receiving. However, I also had chemo directly into my peritoneal cavity, which is more commonly done for those cancers not within the colon.

    You still have lots of questions that need to be addressed - don't be shy. Insist that your dr talk with you and explain, and if he/she can't, then find an expert who will.
  • C Dixon
    C Dixon Member Posts: 201
    tesslee said:

    i love you guys
    thanks for all the help and suggestions. i'm only going to address the emend right now. when i went back for blood work on wednesday i asked for amend. they phoned in a prescription for me. my cost - 191.00. BCBS cost is over 900. that would be almost 400 a month.

    can't afford it.

    Patient Assistance Program
    Does your practice have something like this that might help cover the cost? I agree, that is too much money.

    Catherine
  • geotina
    geotina Member Posts: 2,111 Member
    Tess
    Are they giving you an IV of anti nausea before the actual infusion of chemo? George did not take Emend but he did have an IV of Anzamet before the actual chemo and he never had any nausea, in fact, had a pretty good appetite. I have not heard of a lot of people naming Anzamet for anti nausea but it worked great for George. Just a thought. Oh, almost forgot, George also found drinking ginger ale very soothing.

    If the Emend is too expensive for you from a pharmacy, try Costco (I don't think you have to be a member to get a prescription filled). They are usually significantly cheaper than a pharmacy such as CVS. They will give you the cost over the phone, most places will.

    Take care.

    Tina
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    geotina said:

    Tess
    Are they giving you an IV of anti nausea before the actual infusion of chemo? George did not take Emend but he did have an IV of Anzamet before the actual chemo and he never had any nausea, in fact, had a pretty good appetite. I have not heard of a lot of people naming Anzamet for anti nausea but it worked great for George. Just a thought. Oh, almost forgot, George also found drinking ginger ale very soothing.

    If the Emend is too expensive for you from a pharmacy, try Costco (I don't think you have to be a member to get a prescription filled). They are usually significantly cheaper than a pharmacy such as CVS. They will give you the cost over the phone, most places will.

    Take care.

    Tina

    tess......
    something to try....orange sunkist soda lukewarm...small drinks, also chili (mild) it actually overwhelmed the nausea for me... It was a mainstay for me and yes the nausea was a biotch for me during chemo...Love and Hope to you....Buzz
  • sheri22
    sheri22 Member Posts: 273
    Ask your dr if he can give you some samples for the anti naseau
    Tesslee

    Sorry to here you are feeling crappy. Sometimes you just gotta ask if they have any samples of the meds my DR was really good about that, the enzmet and giner have helped me a lot. I learned to start taking the ginger at least 4 days befor chemo and the enzmet befor I started chemo that day. Also I learned to just take it first thing in the morning while on chemo hope you get some answers soon and start feeling better, and can get some samples take care

    Sheri22
  • La.Grammy
    La.Grammy Member Posts: 35
    tesslee said:

    i love you guys
    thanks for all the help and suggestions. i'm only going to address the emend right now. when i went back for blood work on wednesday i asked for amend. they phoned in a prescription for me. my cost - 191.00. BCBS cost is over 900. that would be almost 400 a month.

    can't afford it.

    Free Emend
    You can go to emend.com & apply for patient assistance.
    The ACT program provides EMEND free of charge to eligible patients who do not have insurance coverage. Our insurance does not pay for prescriptions.
    You and your Doctor will have to fill out the forms.
    The prescription for emend will have to be faxed in by your Doctor.
    It took 3 to 4 days for it all to be approved.
    I had to call them a couple of times to make sure everything was ok since my husbands chemo was in 1 week. When it was approved they send the package by UPS next day air.

    Hope this helps
    Jeannie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    La.Grammy said:

    Free Emend
    You can go to emend.com & apply for patient assistance.
    The ACT program provides EMEND free of charge to eligible patients who do not have insurance coverage. Our insurance does not pay for prescriptions.
    You and your Doctor will have to fill out the forms.
    The prescription for emend will have to be faxed in by your Doctor.
    It took 3 to 4 days for it all to be approved.
    I had to call them a couple of times to make sure everything was ok since my husbands chemo was in 1 week. When it was approved they send the package by UPS next day air.

    Hope this helps
    Jeannie

    Jeannie
    I just wanted to say welcome to this forum. I hope you are finding it useful, as I have.
  • La.Grammy
    La.Grammy Member Posts: 35
    AnneCan said:

    Jeannie
    I just wanted to say welcome to this forum. I hope you are finding it useful, as I have.

    Thanks for the welcome!
    I

    Thanks for the welcome!
    I appreciate all the information this form has given me the last couple of years.
    I hope to be able give back.

    Jeannie
  • jararno
    jararno Member Posts: 186
    I Agree totally! April 26th.......First chemo for me!
    Hi....I just wanted to say that I could have written this exact post. The drugs sound the same and the horrible nausea. Unfortunately the "you can't get be sick" thing seemed to be what I was getting also! I was horribly ill as they were messing with my newly installed port and was sick when the nurse was removing the pump a few days later! ( They didn't offer a bag, garbage can or anything and I ended up bolting to the nearest bathroom to get sick along with losing my bladder! ) The cold thing is the same....very weird feeling. The antinausea drugs came up along with everything else. I am on my off week and really don't want to go through this next week! I haven't had the skin peel feeling, but have had massive trots and horrible bowel gas! I had a sigmoid colectomy in February. Diagnosed Stage III Colon Cancer. 5 Lymph Node involvement.

    Mashed potatoes with a tiny bit of Turkey and Gravy seem to go down best right now. The weird thing is I am having food cravings right now, but in general food sounds bad. Warm Lemon lime flavored decarbonated, decaffinated drinks seem the best. ( The metal cans hurt to touch....such a weird feeling ) Trying to get hubby/family to understand has been the hardest! I have quite a history of nausea over my lifetime so this isn't "new" to me....just the whole Chemo part.

    Thanks for making me feel that I am not alone in this......Hoping to get through the next treatment without killing the nurse ( maybe I'll just get sick on her )

    Hope you are feeling better!!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    "Smoke pot, smoke pot
    everybody smoke pot"
    ~ from I am the Walrus
    All joking aside, it works better (for me) than any of the prescribed meds.
    I know that I've had times where my nervousness has made me throw up.
    Hope you get a handle on it.
    -p