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2nd cycle

ta8631
Posts: 40
Joined: Jun 2012

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

CHRIS M001's picture
CHRIS M001
Posts: 23
Joined: Jun 2012

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's picture
allmost60
Posts: 3172
Joined: Jul 2010

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's picture
Aaron
Posts: 241
Joined: Jun 2012

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
Posts: 40
Joined: Jun 2012

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 :(

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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jimwins's picture
jimwins
Posts: 2065
Joined: Aug 2011

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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's picture
forme
Posts: 1158
Joined: Aug 2010

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
Posts: 40
Joined: Jun 2012

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
Posts: 40
Joined: Jun 2012

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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Andy187
Posts: 18
Joined: Jul 2012

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's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

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

Andy187
Posts: 18
Joined: Jul 2012

Wlow, your full f information....thank you so much buddy. You and this site has been a blessing. I had the booster shot the day after my first treatment. They told me to take Claritin for the back and chest pains. No pain yet for me...yeeeyyyy...

Today was my last day on Pred. Let's see what happens tomorrow. Thank you sooooo much Max, your the man and a real inspiration. Hey, got a question, when do you usually start loosing your hair? I want to get a head start and shave it off first.

My taste buds comes and goes. Still can't really taste spices and stuff...need to add some salt to my food sometimes.

Thanks for the info Max and god bless you. Keep in touch...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

My wife says I am "full" of "something" !

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Andy,
I took 60mg of pred the day of chemo and again for the following 4 days. My chemo was always given on a Tuesday , so my last dose of pred was on Saturday morning. By Sunday evening I would start to feel the achey sore joints. I'd be so tired and exhausted from not sleeping the week before that the following week I'd sleep and nap most of the time. My shoulders hurt, knees ached and I remember when I'd sit down on the toilet the bones in my butt hurt so bad that I'd have to live my butt off the seat to pee. My joints still bother me 2 years out from chemo, but I'm still getting Rituxan infusions every other month, so that might be the reason. I didn't get any mouth sores, but certain foods tasted really strange. I didn't like really cold beverages...sounds weird, but cold drinks left me feeling cold "inside" and sometimes caused me to feel chilled....(if that makes sense). Also...I didn't use tooth paste during my 6 rounds of chemo, but instead brushed my teeth, gums and tongue with baking soda. I remember brushing 3 to 4 times a day just to keep that fresh feeling in my mouth. I gargled with warm salt water to help with the scratchy sore throat...(still do because the Rituxan makes my throat sore). My nose dripped all of the time...went through kleenex like crazy, but never had any sores in my nostrils. I bought kleenex with lotion in them...extra soft and easy on the nose. I would boil salt water on the stove and then lean over the steam with a towel over my head to help with my nose/nostrils feeling sensitive. These are just a few tips that helped me...hope they help you. Hang in there friend...the end prize is worth the present discomfort. Sue
(FNHL-2-3A-6/10)

Andy187
Posts: 18
Joined: Jul 2012

Hi Sue,

Thank you for the heads up. Wow, I had total knee replacement in Janary and I was due for another surgery in the same knee. My Ortho. And Onco. Spoke and said NOOOOO.. Until treatment is done. My knee has been killing me. Well, I should be feeling something by tomorrow night.

My nose drips a lot still. Have kind of scratchy throat and dry cough as if I was getting a cold. I got the booster shot for my WBC the day after my first treatment. They told me to take claritin for 5 days and that should help with the back and chest pains. Havent felt any pains yet thank god.

My inside of my left nostril still bothers me and hurts though. I'm going to try what you said and see what happens. Thanks sue for your imput. I really appreciate it. God bless you and thanks for the tips...;) your an angel!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1155
Joined: May 2012

Andy,

Abvd pretty consistently causes the hair to drop out about five days after the second cycle. Assuming chop is similiar, assume a few days after the second infusion. It may vary a little, but probably not a lot.

Note: It will fall out in gobs, handfuls. It is an emotional time for most. It will not be a gradual loss.

Odd occurence: A friend has a serious cancer that began inside his nostril. I am not sure what it was, but I suspect melenomia or such. He went for surgery at Emory in Atlanta. They super-radiated his nose the day before surgery, and he said the next morning hs beard had fallen out !

I was speaking with an RN at my center about sider-effects and skin tone, and she told me of a patient whose EYE color changed under chemo (and never changed back).

Do not let many things surprise you with this stuff. The first chemo drug was mustard gas, during WW II. Mustardgen is still in use today, FDA approved.

Hang in there our friend,

max

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