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side effects - increasing - advise please

breezie
Posts: 22
Joined: Jul 2009

Just completed #5 of 12 treatments Oxaliplatin, 5-FU and Leucovorin and was wondering if what I'm experiencing is typical. Treatments 1 & 2 were tolerable but #3 hit me really hard, extreme exhaustion, cold sensitivity, shortness of breath, strong food reaction, muscle aches in calves and forearm, headache, sour stomach, indigestion, etc. Most of the side effects are flu like but the neuropathy ones are starting to freak me out. Treatment #5 was the worst. I felt the heaviness in my arm shortly after the Oxaliplatin infusion was complete. The next day my calves were really sore and by nighttime and into the next day the soreness (cramping) was so bad that I had difficultly walking until the muscles loosen up. The shortness of breath kicks in by day 5 and it's difficult to move from one room to another without stopping to catch my breath. Extreme exhaustion kicks in on day 3 (disconnect day) and continues until day 6 or 7. With this last treatment I also experienced hand cramping in both hands although the right was worse (I'm right handed).

The reason I'm seeking your advise is because my Oncologist gives me the impression that what I'm experiencing is not typical of his patients. Prior to start of treatment I was led to believe that the side effects would be minimal and that they shouldn't interfere with my life. My Oncologist remarked that I was healthier than his other patients and that perhaps my body just wasn't made for chemotherapy (who's is). I'm not a crybaby, I've raised a child on my own, taken care of a house, yard, finances, worked a 40+ hr job (recently retired), was caregiver for my mother the last year of her life and always put myself last.

I hate to alter the treatment plan but wonder if decreasing the Oxaliplatin dosage or removing it all together for treatment #6 would make a difference and yet not decrease my chances or re-accurance. I'm Stage 3 (3 of 60 lymph nodes positive). Any advise you can give me would be greatly appreciated.

Thanks, Dorothy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I'm not on Oxy, but Folfiri and Avastin, and from what I have read and heard about that nasty drug is the horrible side effects it has. From the cold sensitivity to the neuropathy, and even eyes freezing shut, the oxy scares me. But I'm sure you'll hear from others who are dealing with these issues as well, who are on oxy. I believe it is accumulative, I just finished my 10th out of 12 treatments of Folfiri, and I don't think anything has accumulated much in me, except maybe the nausea pills need to last longer I think, but otherwise, I don't have any issues with it at all.

Hope someone can help you, I just wanted you to know you have my support, and all gets better!

Hugsss!
~Donna

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

My husband was on that chemo his dr did reduce the dosage at times because of the side effects so please ask your dr about that,

michelle

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

the same regime you are now taking. I received it every other week and my treatment consisted of:

a) Bloodwork to determine if levels were good to receive treatment
b) If bloodwork was good, I would get hooked up my 20/30 minute IV infusion of magnesium and calcium
c) After b), I received pre-meds; steriod and nausea pills
d) After c), received the chemo infusion for about 4 hours.
e) Afer d) received my 5FU push by IV and then hooked up the 5FU pump for 46/48 hrs.

I tried to continue my normal routine, execept for weight lifting due to the port. The side effects a accumlative and I had my dosage reduced by 20% and according to my Onc Dr., this was industry standard (2006), which did help with neuropathy. Some of the side effects I got were:

a) Flushing of face and neck (real red)
b) Mouth sores (magic mouthwash really helped0
c) Headaches
d) I did not experience the cold sensitivity because I made sure I drank an ate room temp foods and beverages until I was totally complete.
e) Fingernail lines (roughness)
f) Tingling in arms, wrists, hands an feet
g) First bite syndrome
h) Wrists locked up when typing at work (worked next to a window; winter months)
i) Hives, allergic reaction at #6.

I made sure I told my care team every sympton I was experiencing and discussed so I had peace of mind.

breezie
Posts: 22
Joined: Jul 2009

Hi Nudgie,

I've had all the side effects you mentioned except mouth sores and the allergic reaction but my dr asked me at treatment #5 if I had a rash so will take that as a sign of things to come. My treatment day/plan pretty much follows yours except that I only receive two anti-nausea drugs and then 1/2 hr later the Oxaliplatin and Leucovorin are given over a 2 hr period followed by a 5FU push and then baby bottle hook-up. I keep a daily diary of side effects and inform the nurses at disconnect time plus keep my dr advised of any new ones or increased intensity of previous ones. I wonder who determines the rate of infusion? I am going to request a reduction at the next treatment if he still wants to continue the same protocol. Thanks for all your information.

Dorothy

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

hey- I went back over my chemo notes to be able to come back here and give you some definites. I was hospitalized after treatment 5- then my onc started hacking away at the oxil, then making fine adjustments through treatment 8- I was then hospitalized again for severe dehydration- two comments he made were I was done with oxil and I had reached my toxic level. I was so dizzy for weeks after the last oxil-
I really do think what you are going through is normal, to some extent at least. The idea is to walk the fine line between killing the cancer cells and keeping you alive without too much permanent damage. They can and should reduce the oxil when you start to get toxic. I truly think that is my onc job- to bring me to deaths door and then bring me back. And really, he did a great job of it. My onc did get to the point where he let me call the shots, I am the one who told him from treatment 6 on what I could tolerate and he responded accordingly. When he totally took away the oxil after #8- he was so reassuring- that for years and years 5FU was the only chemo drug for cc and he had no problem in giving me that for the remainder of chemo.

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betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I went through the same chemo that you are, my side effects were not bad at all, I continue working through all my treatment,but more or less after treatment 6 my platelets started to go down I was sent home a couple of times,then after a couple of days they would bounce back and was able to have my chemo, my Dr. decided to reduce my dosis 20% across the board,after treatment 7,I was terrified,because I wanted my treatment to be as agressive as possible I even asked to extend the chemo to 13 cycles to make up for the reduced dosis, he told me that if that would make me happy he will do it but he thought it was not necesary,when time came for #12, I decided that was enough,and told him that I was not going for # 13, I am stage 3A and have been Ned for 3 years!!!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I started to have issues with chemo about treatments 4-6 (I never remember the exact one)- and it was pretty bad. I was hospitalized 3 times for chemo reactions- I was pretty dang sick. My onc started to reduce the oxil after about treatment 4, my last hospitalization was days after treatment 6 and then the rest of the chemo was oxil free. I would say more than anything with me I struggled with mouth sores, taking in fluids and food and the general overall feeling of constant death warmed over. My onc took it in stride- he did reduce the oxil in half after I was hospitalized after #4- and then after #6 he said "you are done with oxil".

I would say what you are going through is somewhat typical- but it is also pretty typical to have the oxil reduced in the second half of treatment. I would encourage you to ask your onc what he looks for to reduce the oxil- hang in there-

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

I am holding on the 9th cycle because of low blood count but I have had no problems with this treatment. I have continued to work a normal schedule. Good luck with yours.

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

I am sorry for what you are going through. No. 2 was terrible for me with lots of aches, nausea, cold sensitivity, fatigue and then I started taking vitamin B6 which helped. I was good until I got to No 5 then I could tell symptoms were lasting longer, however, I never had any of the extreme effects that you are experiencing. I am now 5 days from being disconnected and although I am fatigued, cold sensitivity, lack of good appetite and some neuropathy, I'm still able to go to the store, church, little yard work, etc. I would ask your doctor again what he thinks you should do with feeling so rotten. I was told by my oncologist that the oxy was nothing more than a nuisance, but I beg to differ. My doctor went away on maternity leave and told me that the medicine could be reduced if I needed to because of side effects, however the doctors that I saw after that wouldn't do it. I hope you feel better soon and let us know how you are doing.

Kim

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Dorothy I am sorry that you are experiencing all those side effects. I am sorry too that your doc implied you are unusual. That starts to make one question oneself and doubt oneself and end up thinking..."am I just a wimp"????

I was on xeloda and oxy. I had been on pure xeloda for 6 months so I knew when I really started to get side effects it was the oxy. I had all the flu like things, back ache head ache...neuropathy...you name it I had it by round 3. My dose was reduced and even with by round 6 I felt the world was coming undone.

Do not feel you alone....these are all valid oxy side effects despite what the doc says.Why not discuss it again with your onc...maybe he would suggest a reduction? IT IS NOT EASY this crappy chemo.

thinking of you

~mags~

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Exactly the same as Nudgie except that I didn't have any reaction...I stopped the oxal at #11 and 12 because of neuropathy and they were the easiest 2 treatments I had ever done...The oxal is the beast but it is what kicks its butt. It is acumulative and gets harder every treatment. You may have him slow the infusion down even farther from 4 to 6 hrs. It will lessen the side effects somewhat. I had a rough go of the treatments just for the simple nausea that was a killer for me, never could control it. Keep your ONC alert about everything and remember that you are your own advocate for your treatment so if something doesn't feel right then it may well not be..Keep him informed...Good Luck to you...Clift

eric38's picture
eric38
Posts: 588
Joined: May 2009

You are not unusual. Oxy is a nasty drug. Instead of giving me 12 rounds of the same thing my onc. chose to mix it up and give me 6 rounds of one treatment and 6 rounds of another. The recent treatment has me on oxy and it is already kicking my butt at #3. The bad side affects hit me at #2 and as soon as I told my doctor about it he reduced my dosage by 20%. He said he did not think it would diminish the therapeutic value. I don`t know if your doc is unsympathetic or does not pay attention to his patients but you surely cannot be the first person that has brought this up. I think reducing the dosage is pretty standard and he needs to listen to you instead of making you feel like a complainer. It still sucks with the reduced dosage but it is more tolerable. I`m no good for at least 5 days after treatment. the worst day is usually the 3rd day. I am just grateful I`m only doing 6 treatments of oxy. I hate that stuff but I love what it does for me. My first 6 treatments were very successful and I am going to go on the assumption that these last 6 treatments will be even more successful. At last scan I was as close to being ned as possible without actually being there. I hope you have the same results. I experienced shortness of breath too but since my doctor reduced the dosage the I have not had that problem.

Eric

breezie
Posts: 22
Joined: Jul 2009

Thank you all so very much for responding to my inquiry. I'm hoping that if my doctor decides to give me Oxy for treatment #6 that he reduces the dosage. His decisions to continue the previous dosages seemed to be based on the fact that I rebound and that my blood work is within acceptable ranges. I have been experiencing shortness of breath since October but only when climbing a flight of stairs however the shortness of breath worsens by day 5 and continues almost up to the next treatment day. My doctor tells me that I'm ned now -- I'll believe it when this is over and done with and the 3mo checkups back him up although I can't imagine anything surviving those drugs.

Dorothy

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I made it through all 12, I think exactly the same as Nudgie. Never had a reduction in the treatment plan tho. I live in Minnesota, and had it through last winter, I was the one with the frozen eyes (what a trip that was!)! They gave me vicodin for the leg cramps. I took Advil PM to sleep on the treatment nights when I couldn't sleep along with the vicodin. I worked through the whole thing, even on treatment days, and it was HE-double toothpicks to get to work, until my fiance had a remote installed in my truck so it would be warm when I got in. the neuropathy was really bad here. It is cumulative, and gets harder each session. but I made it. I am 4 months out now. still have the neuropathy in the tips of my fingers and the bottom of my feet but it is getting better slowly. still tired, but not as bad. I had some of every side effect there was - you can do it (but if you feel you can't as they said, some docs reduce the dosage, mine told me to troop on and if it got worse he would)!

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Dorothy - my husband is stage 3, also, 4 out of 33 lymph nodes positive and is on the 5Fu treatment plan with the Oxciliplatin and levcovarin, his side effects are mostly nausea daily, and tingling of his fingers, also sensitivity to cold. I think what bothers him the most is nausea, doesn't like to take pills but he does agree taking the pills is better than vomitting. His doctor has taken out the oxciliplatin this time because his platelets are extremely low, but he also told him that if needed he would reduce this drug or the side effects were intolerable. Just talk to your doctor and see what he/she can do for you. His oncologist is very understanding and he wants to make his treatments as comfortable as possible. Take care and God Bless. I pray things will get better for you.
Margaret

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