2nd cycle

I am wondering if everyone's side effects generally stayed the same with each treatment?? I am really hoping so but not getting my hopes up. I had my 2nd cycle today and have started prednisone again....arghhhh I hate that stuff
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Comments

  • CHRIS M001
    CHRIS M001 Member Posts: 23
    I would say overall the side
    I would say overall the side affects stay the same. I had a bad time with the Prednisone. I was in the hopsital twice with pancrease pain which is a rare side effect. I did 6 rounds of CHOP. I dont think they got my white blood cell count figured out till about the 3rd teatment. I took nuepogeon shots every other day for 5 days. That got my counts pretty stable. Constipation was another big problem. Naseua meds did not work for me. Tried everything from Ativan and Zofram to Emend. Just keep counting down the treatments. When i got to my 3rd i kept telling myself i was half way done. Stay as positive as you can and surround yourself with positive people. Hope you start feeling better soon.
  • allmost60
    allmost60 Member Posts: 3,178
    More tired...
    Hi ta,
    Fatigue and weak legs got worse with each round for me. The prednisone always messed with my breathing(shortness of breath)and caused my heart to race. My face would flush and get puffy looking, but after the 5 day dose was over that part would go away. I did get some slight neuropathy in my toes and fingers after my 3rd round, but that went away within a few months of finishing chemo. The prednisone was the worst part of chemo for me. I hate that stuff too and know exactly what your saying..UGH! Hang in there and just take it one day at a time. Listen to your body, rest and drink plenty of fluids. I'm sorry you have to take the nasty pred. Keeping you in my prayers... Much love...Sue
    (FNHL-2-3a-6/10)
  • Aaron
    Aaron Member Posts: 237
    allmost60 said:

    More tired...
    Hi ta,
    Fatigue and weak legs got worse with each round for me. The prednisone always messed with my breathing(shortness of breath)and caused my heart to race. My face would flush and get puffy looking, but after the 5 day dose was over that part would go away. I did get some slight neuropathy in my toes and fingers after my 3rd round, but that went away within a few months of finishing chemo. The prednisone was the worst part of chemo for me. I hate that stuff too and know exactly what your saying..UGH! Hang in there and just take it one day at a time. Listen to your body, rest and drink plenty of fluids. I'm sorry you have to take the nasty pred. Keeping you in my prayers... Much love...Sue
    (FNHL-2-3a-6/10)

    Hang tough
    Hang in there Ta, you'll get through this. I get my port next week and start next Friday so I'm sure I'll be asking the same questions soon enough. I won't be on the prednisone train but I'm sure the abvd will have a load of fun things to deal with. How did you do with your first rituxan infusion? I wish you all the best as we fight off this NLPHL curveball life has thrown us. Take care Aaron
  • ta8631
    ta8631 Member Posts: 40
    Aaron said:

    Hang tough
    Hang in there Ta, you'll get through this. I get my port next week and start next Friday so I'm sure I'll be asking the same questions soon enough. I won't be on the prednisone train but I'm sure the abvd will have a load of fun things to deal with. How did you do with your first rituxan infusion? I wish you all the best as we fight off this NLPHL curveball life has thrown us. Take care Aaron

    Rituxan
    It went well, first one took forever because they give it to you sooooo slow to watch for any reactions. That was the hardest part. Made me feel a little fuzzy for awhile but nothing to bad. This time it went alot faster thank goodness because those chairs do a number on my back :(
  • jimwins
    jimwins Member Posts: 2,107
    Hi TA
    Hi TA,

    I pretty much agree with everyone else here.
    The fatique did get worse with each cycle. It does get
    easier as you know what to expect, etc.

    Prednisone is pretty tough for most everyone but is necessary.
    Hang in there, you're doing great!

    Jim
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    ta8631 said:

    Rituxan
    It went well, first one took forever because they give it to you sooooo slow to watch for any reactions. That was the hardest part. Made me feel a little fuzzy for awhile but nothing to bad. This time it went alot faster thank goodness because those chairs do a number on my back :(

    Good

    Ta,

    Glad things sped up just a bit for you. I always got Rituxan first in the morning, after benadryl, but I do not know if that was "random," or if it "should" be administered first.

    My infusion center had 37 stations, and the chairs were not too bad. They all reclined and were very adjustable. At any given time, about half the patients in there were asleep. I had what I called my "Lucky Chair," and used only it for all 12 infusions.

    None of the r-abvd drugs is a pill, so I never had an infusion shorter than around 7.5 hours. Carry some reading material and think forward to the day when infusions are just a distant memory...

    max

    .
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    jimwins said:

    Hi TA
    Hi TA,

    I pretty much agree with everyone else here.
    The fatique did get worse with each cycle. It does get
    easier as you know what to expect, etc.

    Prednisone is pretty tough for most everyone but is necessary.
    Hang in there, you're doing great!

    Jim

    Three Years...

    Ta,

    Each infusion got progressively worse for me. I was essentially unable to do much of anything by the end (including stay awake). Sorry to be a kill-joy, but I have seen this progressive weaking in many friends under chemo.

    Today, I got my three-year-out blood results: All clean. This is the goal we keep in mind.

    Also, I asked my NP (MSN)today about the toxicity of r-chop verses r-abvd. She said abvd was almost universally considered more toxic, with more side-effects.

    Update us sometime,

    max
  • forme
    forme Member Posts: 1,161 Member

    Three Years...

    Ta,

    Each infusion got progressively worse for me. I was essentially unable to do much of anything by the end (including stay awake). Sorry to be a kill-joy, but I have seen this progressive weaking in many friends under chemo.

    Today, I got my three-year-out blood results: All clean. This is the goal we keep in mind.

    Also, I asked my NP (MSN)today about the toxicity of r-chop verses r-abvd. She said abvd was almost universally considered more toxic, with more side-effects.

    Update us sometime,

    max

    Congratulations
    Hi Max

    Just wanted to say congratulations on your three year blood test results. What wonderful news. I love it when I read that someone has positive news. Keep it up!

    Also, welcome to our great group. Sorry to be so late in the welcome...

    So happy for you.
    Lisha
  • ta8631
    ta8631 Member Posts: 40

    Three Years...

    Ta,

    Each infusion got progressively worse for me. I was essentially unable to do much of anything by the end (including stay awake). Sorry to be a kill-joy, but I have seen this progressive weaking in many friends under chemo.

    Today, I got my three-year-out blood results: All clean. This is the goal we keep in mind.

    Also, I asked my NP (MSN)today about the toxicity of r-chop verses r-abvd. She said abvd was almost universally considered more toxic, with more side-effects.

    Update us sometime,

    max

    I am feeling much better
    I am feeling much better after a long exhausting week :( My side effects stayed the same as the first cycle definetly more tired. I slept for 12 hours on wednesday. Hoping i can continue this same path throughout, i have only had to miss a few days of work with each cycle so it hasn't been to bad :) I must have been confused at what my Dr said about RChop and AVBD..... would suprise me i am suppossed to let my husband do all the listening but when we discussued it i was on the phone and the husband was tending to the kids :)
  • ta8631
    ta8631 Member Posts: 40
    ta8631 said:

    I am feeling much better
    I am feeling much better after a long exhausting week :( My side effects stayed the same as the first cycle definetly more tired. I slept for 12 hours on wednesday. Hoping i can continue this same path throughout, i have only had to miss a few days of work with each cycle so it hasn't been to bad :) I must have been confused at what my Dr said about RChop and AVBD..... would suprise me i am suppossed to let my husband do all the listening but when we discussued it i was on the phone and the husband was tending to the kids :)

    Max
    P.s Great news on your blood work Max...... defintely something i am looking forward to in the upcoming future :)
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    ta8631 said:

    Max
    P.s Great news on your blood work Max...... defintely something i am looking forward to in the upcoming future :)

    The Future
    ta,

    You will have this behind you soon. I stared chemo with a gung-ho attitude, thinking "It will be tough, but I will knock it out!"

    Pretty soon, I was effectively knocked out, and had a very hard time of it. As I have mentioned, I was sleeping 17 hours per day average by my third or fourth infusion. People told me later that I was grey colored. My neighbor with NHL, a younger, big guy 30 years old, had it worse, and had to be hospitalized for 4 days for every infusion. I do not know what chemo drugs he took (it was not chop or abvd), but he was skinny at the end, and got total remission also.

    Just keep in mind the finish line, no matter how rough it gets !

    Bless you,

    max

    .
  • Aaron
    Aaron Member Posts: 237

    The Future
    ta,

    You will have this behind you soon. I stared chemo with a gung-ho attitude, thinking "It will be tough, but I will knock it out!"

    Pretty soon, I was effectively knocked out, and had a very hard time of it. As I have mentioned, I was sleeping 17 hours per day average by my third or fourth infusion. People told me later that I was grey colored. My neighbor with NHL, a younger, big guy 30 years old, had it worse, and had to be hospitalized for 4 days for every infusion. I do not know what chemo drugs he took (it was not chop or abvd), but he was skinny at the end, and got total remission also.

    Just keep in mind the finish line, no matter how rough it gets !

    Bless you,

    max

    .

    Max, ta & mnk
    Just curious, did (do) you get rituxan with every infusion? I'm only getting it on even # infusions. Just wondering
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Aaron said:

    Max, ta & mnk
    Just curious, did (do) you get rituxan with every infusion? I'm only getting it on even # infusions. Just wondering

    Rituxan
    Aaron,

    I got rituxan every infusion. At least some of your days will move faster !

    Wishing you well all the time,

    max
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member

    Rituxan
    Aaron,

    I got rituxan every infusion. At least some of your days will move faster !

    Wishing you well all the time,

    max

    PS --
    Aaron,

    One more note: Realize that abvd and chop were both used for decades before rituxan was even developed, and some docs seem to not use it at all. From what I have read, it is useful nonetheless.

    I also made a reply to you on your "Worst Days" thread. I do not consider this site very easy to keep up with.

    max

    .
  • Aaron
    Aaron Member Posts: 237

    PS --
    Aaron,

    One more note: Realize that abvd and chop were both used for decades before rituxan was even developed, and some docs seem to not use it at all. From what I have read, it is useful nonetheless.

    I also made a reply to you on your "Worst Days" thread. I do not consider this site very easy to keep up with.

    max

    .

    Yea, I probably wouldn't
    Yea, I probably wouldn't have gotten it without the reccomendation from the scca doc. Just wondering why some would give it every time and some just half the time. Probably cost and lack of long track record of usage. Hopefully it will still reach the same efficacy. Just curious max, (and everyone) how did you fair with the whole sore mouth and throat thing?
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Aaron said:

    Yea, I probably wouldn't
    Yea, I probably wouldn't have gotten it without the reccomendation from the scca doc. Just wondering why some would give it every time and some just half the time. Probably cost and lack of long track record of usage. Hopefully it will still reach the same efficacy. Just curious max, (and everyone) how did you fair with the whole sore mouth and throat thing?

    Mouth/Throat

    My buddy Aaron,

    I had no cancer above the collar bone, but did suffer sore throat from the meds. I believe the Rituxan and vinblastine are the main culprits in the neck-mouth areas. I never got any abscesses or bad sores. What did happen is after about the 2nd or 3rd treatment, I lost all sense of taste, and had very odd taste sensations. My mouth felt FULL OF SALT all the time. The doc said this was an odd variation of the fairly common "metal mouth" -- the sensation that your mouth is lined with aluminum foil.

    Later, I had an adversion to all food, and got to where I would eat only french fries for a long time. Cravings are common. A friend did MOPP decades ago, and said that he could eat nothing but pot pie for months. I guess Swanson was happy.

    One day, I started drinking a glass of tap water, and it tasted like mud in my mouth. This only happened once, fortunately. One other time, my mouth felt full of blood (there was no bleeding or blood present). That was unsettling, to say the least. Hopefully you will avoid the bizarre stuff.

    I know the docs can perscribe some sort of soothing mouthwash. I would go ahead and get stocked up now.

    Always an hour or so from this site,

    max

    .
  • Andy187
    Andy187 Member Posts: 18

    Mouth/Throat

    My buddy Aaron,

    I had no cancer above the collar bone, but did suffer sore throat from the meds. I believe the Rituxan and vinblastine are the main culprits in the neck-mouth areas. I never got any abscesses or bad sores. What did happen is after about the 2nd or 3rd treatment, I lost all sense of taste, and had very odd taste sensations. My mouth felt FULL OF SALT all the time. The doc said this was an odd variation of the fairly common "metal mouth" -- the sensation that your mouth is lined with aluminum foil.

    Later, I had an adversion to all food, and got to where I would eat only french fries for a long time. Cravings are common. A friend did MOPP decades ago, and said that he could eat nothing but pot pie for months. I guess Swanson was happy.

    One day, I started drinking a glass of tap water, and it tasted like mud in my mouth. This only happened once, fortunately. One other time, my mouth felt full of blood (there was no bleeding or blood present). That was unsettling, to say the least. Hopefully you will avoid the bizarre stuff.

    I know the docs can perscribe some sort of soothing mouthwash. I would go ahead and get stocked up now.

    Always an hour or so from this site,

    max

    .

    Have NO taste what's so ever...
    Well, I just went through my first round of R-CHOP this past Monday . I'm in my last day of the Pred. Thank god. I haven't been able to sleep more than 8 hours till today. Haven't gotten really bad side effects but yesterday everything I ate taste like crap. Brushing and rinsing with biotine helps. Also mints and pop cycles helps a lot.

    Im just wondering, after tomorrow coming down from the Pred. Will I get those pains in my joints and bones? Yesterday was really the only day that I felt tired and not doing anything. Like Max, I'm trying to be tough and strong and keep positive. Will it get wost as cycles passes by? I need 5 more cycles in my treatment.

    Drinking a lot of fluids helps as well. Drinking ensure as well for proteins . Power drinks with electrolytes as well. I'm due for my second cycle on August 20. I am feeling nose drips and some scar tissue in one of my nostrils. Feels like a pimple. Can't barely touch my nose and scratchy throat. Is that normal. Thank you for all your support. I'm so glad I found this site cause I had no clue that so many of us are going through the same thing. Made some new, good friends. God bless you all and I'll keep you all in my prayers. Let's kick butt and be strong.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Andy187 said:

    Have NO taste what's so ever...
    Well, I just went through my first round of R-CHOP this past Monday . I'm in my last day of the Pred. Thank god. I haven't been able to sleep more than 8 hours till today. Haven't gotten really bad side effects but yesterday everything I ate taste like crap. Brushing and rinsing with biotine helps. Also mints and pop cycles helps a lot.

    Im just wondering, after tomorrow coming down from the Pred. Will I get those pains in my joints and bones? Yesterday was really the only day that I felt tired and not doing anything. Like Max, I'm trying to be tough and strong and keep positive. Will it get wost as cycles passes by? I need 5 more cycles in my treatment.

    Drinking a lot of fluids helps as well. Drinking ensure as well for proteins . Power drinks with electrolytes as well. I'm due for my second cycle on August 20. I am feeling nose drips and some scar tissue in one of my nostrils. Feels like a pimple. Can't barely touch my nose and scratchy throat. Is that normal. Thank you for all your support. I'm so glad I found this site cause I had no clue that so many of us are going through the same thing. Made some new, good friends. God bless you all and I'll keep you all in my prayers. Let's kick butt and be strong.

    Taste

    Andy,

    I did r-abvd, not r-chop. While some of the meds are very similiar, they are not identical (except the rituxan - it is identical for both). I never received Pred, for instance. I never had an "up" day, every day had severe fatigue. I slept 15-17 hours per day through my six months of treatment.

    Rituxan can often cause flu-like symptoms -- severe muscle pain, mostly. I was worried that I was getting the actual flu for most of my six months, it was so severe. Loritab was all that would touch it. Also, if you get a neulasta shot for your WBC, be aware that it throws some folks on the floor with orthopedic pain . (It stomped me, but I had arthritis from 18 fractures.)

    With abvd, the Vinblastine is what caused my loss of taste. My mouth felt like it was full of salt all the time, but I had other very odd taste sensations, like water tasting like mud, or that my mouth was full of blood at times. "Metal mouth" is the common term, but I never had a metalic sensation. Salt, instead.

    Chop has a very similiar med, Vincristine. It works the same way as Vinblastine. Vincristine is most likely your culprit in the taste area.

    Go to chemocare.com Then, go to "chemotherapy drugs." It lists every FDA approved chemo drug approved for use in the US ( there are about 150 chemo drugs used in the US today).

    This lista all common, as well as all uncommon, side-effects for each drug.

    Chemocare.com is very authoratative, quality information. No New Age or fringe nonsense.

    Most of the folks here have done chop (it is normally a NHL combo; abvd is the HL norm for most cases), so many will chime in with chop-specific info for you.

    Hey folks ! Andy needs chop info regarding taste issues !


    Bless your struggle, and keep the questions coming,

    max

    .
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Andy187 said:

    Have NO taste what's so ever...
    Well, I just went through my first round of R-CHOP this past Monday . I'm in my last day of the Pred. Thank god. I haven't been able to sleep more than 8 hours till today. Haven't gotten really bad side effects but yesterday everything I ate taste like crap. Brushing and rinsing with biotine helps. Also mints and pop cycles helps a lot.

    Im just wondering, after tomorrow coming down from the Pred. Will I get those pains in my joints and bones? Yesterday was really the only day that I felt tired and not doing anything. Like Max, I'm trying to be tough and strong and keep positive. Will it get wost as cycles passes by? I need 5 more cycles in my treatment.

    Drinking a lot of fluids helps as well. Drinking ensure as well for proteins . Power drinks with electrolytes as well. I'm due for my second cycle on August 20. I am feeling nose drips and some scar tissue in one of my nostrils. Feels like a pimple. Can't barely touch my nose and scratchy throat. Is that normal. Thank you for all your support. I'm so glad I found this site cause I had no clue that so many of us are going through the same thing. Made some new, good friends. God bless you all and I'll keep you all in my prayers. Let's kick butt and be strong.

    taste

    Andy,

    I did r-abvd, not r-chop. However, Vinblastine in abvd causes the taste issues, and chop has a very similiar drug (works the same way) known as Vincristine. Vincristine is probably your culprit.

    I had odd taste issues, but not until about the 4th treatment or so. My mouth never had the famous "metallic" sensation; it felt like it was full of salt all the time. It felt like someone had poured a cup of table salt in all the time ! Very odd and hard to get used to.

    Rituxan causes many people muscle pain, which feels just like a bad case of the flu. I kept this all the time, so much so that I feared I was getting the actual flu. Loritab is all that would touch it. If you get neulasta shots for WBC, it can body slam some folks as well with orthopedic pain. I had to go with a half dose, mine was so bad. But, I had arthritis from 18 fractures from a wreck years before which left me vulnerable to this.

    Clinically, the biggest difference between abvd and chop is that abvd has no Pred. I was exhausted all the time, and averaged about 17 hours per day asleep. There is never a "hyper" period with abvd.

    Chop is usually a NHL combo, and most of the folks here have done chop, so a lot will chime in regarding chop-specific stuff. We do have some commonalities, like Rituxan, and perhaps others.

    I know that Jimwins is very knowledgable regarding Pred.

    Go to chemocare.com for great, authoratative chemo information. It describes all of the (around) 150) chemo drugs used in the US. No New Age or wacked-out nonesense.

    Bless your struggle. Write often,

    Max

    .
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member

    taste

    Andy,

    I did r-abvd, not r-chop. However, Vinblastine in abvd causes the taste issues, and chop has a very similiar drug (works the same way) known as Vincristine. Vincristine is probably your culprit.

    I had odd taste issues, but not until about the 4th treatment or so. My mouth never had the famous "metallic" sensation; it felt like it was full of salt all the time. It felt like someone had poured a cup of table salt in all the time ! Very odd and hard to get used to.

    Rituxan causes many people muscle pain, which feels just like a bad case of the flu. I kept this all the time, so much so that I feared I was getting the actual flu. Loritab is all that would touch it. If you get neulasta shots for WBC, it can body slam some folks as well with orthopedic pain. I had to go with a half dose, mine was so bad. But, I had arthritis from 18 fractures from a wreck years before which left me vulnerable to this.

    Clinically, the biggest difference between abvd and chop is that abvd has no Pred. I was exhausted all the time, and averaged about 17 hours per day asleep. There is never a "hyper" period with abvd.

    Chop is usually a NHL combo, and most of the folks here have done chop, so a lot will chime in regarding chop-specific stuff. We do have some commonalities, like Rituxan, and perhaps others.

    I know that Jimwins is very knowledgable regarding Pred.

    Go to chemocare.com for great, authoratative chemo information. It describes all of the (around) 150) chemo drugs used in the US. No New Age or wacked-out nonesense.

    Bless your struggle. Write often,

    Max

    .

    X2
    Andy,

    Obviously, I wrote two replies, very similiar. It appeared initially that one got lost and never went.

    This site is slower than watching water boil.

    max