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oxaliplatin rare side effect frustration

elaineG
elaineG Member Posts: 20
edited March 2014 in Colorectal Cancer #1
I am on my second cycle of oxaliplatin/capecitabine(xeloda).On the evening of the second infusion of oxaliplatin I experienced a wierd feeling in my tongue, including a slurring when I spoke, and which lasted around 15 minutes. As advised I called the hospital to report this and ended up as having had a suspected TIA. My oncolgist is more or less certain that this is what he referred to as a 'wobbly tongue' side effect,but I have had to attend the TIA clinic where I was given a head scan and neck ultrasound, which were both clear. However, as my dad and brother have had TIAs, and because my cholesterol was slightly raised on that evening( I had just eaten!!), the doctors at the clinic insist on this being a probable TIA. This has resulted in my not being able to drive for a month. My main concerns here are that my oxaliplatin is stopped ( I want to zap every single stray cell that might be out there!), or that if this happens again and again and that I will effectively be unable to drive for the next 6 months because of something that is a side effect and not a TIA. I am obviously alerted to the possibility that it just might have been a TIA, which is also terrifying. I feel like this has become a bit of a nightmare!!
Has anyone else out there experienced anything like this?

Elaine

Comments

  • pepebcn
    pepebcn Member Posts: 6,331
    Feel sorry Elaine,
    I can't help you in this .I was on oxy but didn't have such kind of symptoms ,I'm sure some other mates of the board will help in that issue.
    Welcome to the board! Have a hug!
  • elaineG
    elaineG Member Posts: 20
    pepebcn said:

    Feel sorry Elaine,
    I can't help you in this .I was on oxy but didn't have such kind of symptoms ,I'm sure some other mates of the board will help in that issue.
    Welcome to the board! Have a hug!

    thanks
    Thanks for that - I'm really hoping so!!
  • Lori-S
    Lori-S Member Posts: 1,277
    Elaine
    I am having a very rough time with the Oxy too, only one infusion under my belt. You can read about it in my blog section if you click on my name. I can hardly type today but, it is pretty cold here this morning.

    I do have some tingling and slight numbness in the tip of my tongue but, not slurring. I thought it might be because I was swishing water around in my mouth trying to get it warmer before I tried to swallow as I was getting the shards of glass in my throat sensation.

    Gee, I hope that it gets better for you. I am so so sorry that you are going through this. I am possibly looking at having the oxy dose reduced and if that doesn't work I too may have to have it discontinued. You are not alone with the oxy problems. I will keep you in my thoughts and pray for the best for you.

    Oh and ... Sorry but, welcome to the board.
  • elaineG
    elaineG Member Posts: 20
    Lori-S said:

    Elaine
    I am having a very rough time with the Oxy too, only one infusion under my belt. You can read about it in my blog section if you click on my name. I can hardly type today but, it is pretty cold here this morning.

    I do have some tingling and slight numbness in the tip of my tongue but, not slurring. I thought it might be because I was swishing water around in my mouth trying to get it warmer before I tried to swallow as I was getting the shards of glass in my throat sensation.

    Gee, I hope that it gets better for you. I am so so sorry that you are going through this. I am possibly looking at having the oxy dose reduced and if that doesn't work I too may have to have it discontinued. You are not alone with the oxy problems. I will keep you in my thoughts and pray for the best for you.

    Oh and ... Sorry but, welcome to the board.

    Thanks for that
    Thanks! Time will tell if it will recur, and how the doctors will view it. I'm sort of dreading my next infusion, if it goes ahead. Will post on here how it goes. I also get the glass shards sensation, and had wondered if it was connected - in fact a nurse from the chemo ward did say that as our tongues start way back in our throats that it was most probably connected. Thanks for your good wishes, and all the best to you in the remainder of your Oxy treatment. I hope they manage to continue with a reduced dose, which is what I would like to have in my case, rather than none at all. However, as I was offered a trial of 3 months instead of 6 months of Oxy, it would seem that they suspect that 6 months might be much longer than is necessary - which I will bear in mind if they cut mine!
    Anyway, all the best in the cold weather - I hope the tingling is bearable!
    Thanks again
    Elaine
  • herdizziness
    herdizziness Member Posts: 3,624
    Elaine
    And Lori, the oxy isn't a walk in the park, but if you just remember that you can slightly micro-wave your drink of water then you don't have to worry about those "shards", also, try hot apple cider on those cold days (gets the fluids in and nice and warm).
    It has the side effects of course of the terrible feeling in your hands and feet from the cold, but try and bear with it, it does go away.
    I blame the oxy and xeloda on shrinking my tumors, so I hope that you can last through the side effects. The TIA, I'm not sure about, I know it has different effects, I hadn't heard about that.
    Wish I could be of more help.
    Winter Marie
  • maglets
    maglets Member Posts: 2,576

    Elaine
    And Lori, the oxy isn't a walk in the park, but if you just remember that you can slightly micro-wave your drink of water then you don't have to worry about those "shards", also, try hot apple cider on those cold days (gets the fluids in and nice and warm).
    It has the side effects of course of the terrible feeling in your hands and feet from the cold, but try and bear with it, it does go away.
    I blame the oxy and xeloda on shrinking my tumors, so I hope that you can last through the side effects. The TIA, I'm not sure about, I know it has different effects, I hadn't heard about that.
    Wish I could be of more help.
    Winter Marie

    oxy
    there is absolutely nothing about oxy that would surprise me....no side effect too weird....nasty piece of work......but

    I too like Dizz blame oxy on being tumor free

    hang in .....

    maggie
  • thxmiker
    thxmiker Member Posts: 1,278
    I was told the tingling in
    I was told the tingling in the tongue was due to cold drinks. I had a drink at 50 deg and got the tingle. If you have the slur, your doc will lower the dosage on he next round.

    I am on round 2 and start round 3 Tuesday. I just keep looking at it as only 10 to go.

    The worst part for me is the diarrhea. I was told to take imodium to help my colon asorb fluids. I have taken more imodium the last 3 weeks then I have ever taken in my life.

    My thoughts are with you!
    mike
  • Annabelle41415
    Annabelle41415 Member Posts: 6,711 **
    Oxy
    Oxy is not a fun drug to be on. It had affected my vision, speech, hands, feet, eating and basically just normal things. I'm not sure what TIA is? Once you are off of it, most things do clear up especially the basic sensory problems. The only problem that is still lingering for me is the neuropathy. Hope you feel better.

    Kim
  • Lori-S
    Lori-S Member Posts: 1,277
    I have a question about the oxy
    I thought that I read somewhere ... that if you have early symptoms that they were more likely to go away right after chemo was done and that if they presented later in treatment that they were more likely to be lasting or take longer to go away. Has anyone else heard that?
  • jararno
    jararno Member Posts: 186
    Oxali Side Effects
    Hi,
    Sorry you had that unpleasant experience! I have just finished 12 rounds ( 6 months ) of folfox treatment. The first few treatments I had my hands cramp up like claws and problems with my jaws feeling weird. My doctor lowered my dosage by 25%....it helped a lot. Around my 8th treatment I do remember having trouble speaking, but it only lasted a short time. I actually have developed Peripheral Neuropathy toward the end of the treatments. Tingling in the fingers and toes. My jaw/gums had been numb too, but seem to be better now.

    The eating or drinking of cold stuff is the worst, but I found that lukewarm tea worked the best for me or room temperature drinks.

    Nausea/vomiting was probably the very worst part along with the trots! Sometimes I felt like I lived in the bathroom!

    The not being able to drive part stinks! I have never driven, so this has never an issue for me, but I have felt like I really can't take a walk by myself or take a bus shopping as I am not always steady on my feet these days. This makes me pretty depressed at times!

    Hopefully you can continue your treatments, but sometimes your body can only take so much.

    Best wishes on your journey!

    Barb
  • jararno
    jararno Member Posts: 186
    Lori-S said:

    I have a question about the oxy
    I thought that I read somewhere ... that if you have early symptoms that they were more likely to go away right after chemo was done and that if they presented later in treatment that they were more likely to be lasting or take longer to go away. Has anyone else heard that?

    Symptoms
    I had some neuropathy after the first few treatments....my dosages were lowered and I really didn't have as many problems until the last 4 or 5 treatments when the neuropathy crept back in. I had my last treatment almost a month ago, but the neuropathy seems to get a little worse each day! Most other symptoms started up right away and hit with each treatment. I do think the fatigue also got worse as time went on. Just make sure that you let the doctors know if anything odd or unusual seems to happen. They will probably send you for tests, but at least you will be checked out.

    I forgot that I did have pains in my right neck and chest area after a treatment which then led to me having a dye study done which showed a kink in my port, but assured the docs that the port was still good to use. I also had a treatment to dissolve a fibrin sheath that developed in the port tubing. This happened several times. ( It is always something )

    It did seem like some symptoms would come and go....weird!

    Best of luck....I know you can do it!!

    Take Care,

    Barb
  • elaineG
    elaineG Member Posts: 20
    jararno said:

    Oxali Side Effects
    Hi,
    Sorry you had that unpleasant experience! I have just finished 12 rounds ( 6 months ) of folfox treatment. The first few treatments I had my hands cramp up like claws and problems with my jaws feeling weird. My doctor lowered my dosage by 25%....it helped a lot. Around my 8th treatment I do remember having trouble speaking, but it only lasted a short time. I actually have developed Peripheral Neuropathy toward the end of the treatments. Tingling in the fingers and toes. My jaw/gums had been numb too, but seem to be better now.

    The eating or drinking of cold stuff is the worst, but I found that lukewarm tea worked the best for me or room temperature drinks.

    Nausea/vomiting was probably the very worst part along with the trots! Sometimes I felt like I lived in the bathroom!

    The not being able to drive part stinks! I have never driven, so this has never an issue for me, but I have felt like I really can't take a walk by myself or take a bus shopping as I am not always steady on my feet these days. This makes me pretty depressed at times!

    Hopefully you can continue your treatments, but sometimes your body can only take so much.

    Best wishes on your journey!

    Barb

    oxaliplatin side effects
    Hi all
    Thanks so much for all your comments and encouragement. It's good to hear from others going through the same thing, and also post treatment. I have a 'bring it on' attitude to this drug as a rule, as I fully agree that it will do what it should to get rid of any cancer still floating about, so will put up with the side effects, if the doctors only will reduce the dose rather than stop it. That's good, only 6 more drips to go in that case!! A TIA is a mini-stroke, by the way.But, as more than one of you has said, there ARE symptoms which manifest themselves in the mouth, so am heartened to think that this is only a side effect rather than a mini-stroke.
    I wish you all the very best and will keep you posted.
    Thanks again
    Elaine
  • elaineG
    elaineG Member Posts: 20
    jararno said:

    Oxali Side Effects
    Hi,
    Sorry you had that unpleasant experience! I have just finished 12 rounds ( 6 months ) of folfox treatment. The first few treatments I had my hands cramp up like claws and problems with my jaws feeling weird. My doctor lowered my dosage by 25%....it helped a lot. Around my 8th treatment I do remember having trouble speaking, but it only lasted a short time. I actually have developed Peripheral Neuropathy toward the end of the treatments. Tingling in the fingers and toes. My jaw/gums had been numb too, but seem to be better now.

    The eating or drinking of cold stuff is the worst, but I found that lukewarm tea worked the best for me or room temperature drinks.

    Nausea/vomiting was probably the very worst part along with the trots! Sometimes I felt like I lived in the bathroom!

    The not being able to drive part stinks! I have never driven, so this has never an issue for me, but I have felt like I really can't take a walk by myself or take a bus shopping as I am not always steady on my feet these days. This makes me pretty depressed at times!

    Hopefully you can continue your treatments, but sometimes your body can only take so much.

    Best wishes on your journey!

    Barb

    oxaliplatin side effects
    Hi all
    Thanks so much for all your comments and encouragement. It's good to hear from others going through the same thing, and also post treatment. I have a 'bring it on' attitude to this drug as a rule, as I fully agree that it will do what it should to get rid of any cancer still floating about, so will put up with the side effects, if the doctors only will reduce the dose rather than stop it. That's good, only 6 more drips to go in that case!! A TIA is a mini-stroke, by the way.But, as more than one of you has said, there ARE symptoms which manifest themselves in the mouth, so am heartened to think that this is only a side effect rather than a mini-stroke.
    I wish you all the very best and will keep you posted.
    Thanks again
    Elaine
  • aceskeno
    aceskeno Member Posts: 5
    elaineG said:

    oxaliplatin side effects
    Hi all
    Thanks so much for all your comments and encouragement. It's good to hear from others going through the same thing, and also post treatment. I have a 'bring it on' attitude to this drug as a rule, as I fully agree that it will do what it should to get rid of any cancer still floating about, so will put up with the side effects, if the doctors only will reduce the dose rather than stop it. That's good, only 6 more drips to go in that case!! A TIA is a mini-stroke, by the way.But, as more than one of you has said, there ARE symptoms which manifest themselves in the mouth, so am heartened to think that this is only a side effect rather than a mini-stroke.
    I wish you all the very best and will keep you posted.
    Thanks again
    Elaine

    Oxy side effects
    This drug is awful. I had all the worst side effects right from the first treatment. My rectal cancer was completely gone after the radiation/Xeloda pre surgery, and surgery showed no lymph nodes, so I felt the post surgery chemo was unnecessary, but my onc. felt otherwise. So I had the first infusion (don't have a port, so it was IV) and right away, broken glass feeling in the arm, whole face & tongue were numb, couldn't talk, couldn't see well, eyes tearing. It was like novacain from the dentist!

    After the 2nd infusion 3 weeks later, by other arm was unbelievably sore & had a lot of trouble swollowing. The sore arms too sore to touch and this took a month to heal. These were normal symptoms I was told by my onc. This was last April when the weather was still cool & I had trouble breathing when outside & facial muscles would freeze up. The 3rd infusion in May was the worst, so when it came time for #4, my WBC was so low the onc. said no more infusions, I was done.

    I was also on Xeloda too so don't know if the neuropathy in hands & feet were due to that or the Oxy. I took it until June when I developed low back pain & was told that was not due to chemo, but to stop the Xeloda anyway. It was my personal belief that this was a result of the chemo since it began when the Xeloda was upped to 3 pills in AM, 4 at night.
    I was prescribed Gabapentin, heat, cold, naproxin, vicodin, physical therapy, chiropractic, theraputic massage. Nothing helped for 3 months, and it finally went away. Now 2 weeks ago, the pain started in my groin. Stiff muscle, painful nerve so can't walk without pain. Again, my onc. said it wasn't due to chemo but due to nerve damage from the surgery. However, the hands & feet are still numb & sensitive to cold. He said it would take a year to go away, but I've heard tell some people have had it 3 years out.

    Thankfully, no evidence of cancer. Had clean colonoscopy yesterday & don't need another for 3 years. All blood work has come back OK too, so they just want to check it every 3 months. Guess I'm really lucky! Have to be grateful for this since so many have suffered & not gotten good results.
  • aceskeno
    aceskeno Member Posts: 5
    elaineG said:

    oxaliplatin side effects
    Hi all
    Thanks so much for all your comments and encouragement. It's good to hear from others going through the same thing, and also post treatment. I have a 'bring it on' attitude to this drug as a rule, as I fully agree that it will do what it should to get rid of any cancer still floating about, so will put up with the side effects, if the doctors only will reduce the dose rather than stop it. That's good, only 6 more drips to go in that case!! A TIA is a mini-stroke, by the way.But, as more than one of you has said, there ARE symptoms which manifest themselves in the mouth, so am heartened to think that this is only a side effect rather than a mini-stroke.
    I wish you all the very best and will keep you posted.
    Thanks again
    Elaine

    Oxy side effects
    This drug is awful. I had all the worst side effects right from the first treatment. My rectal cancer was completely gone after the radiation/Xeloda pre surgery, and surgery showed no lymph nodes, so I felt the post surgery chemo was unnecessary, but my onc. felt otherwise. So I had the first infusion (don't have a port, so it was IV) and right away, broken glass feeling in the arm, whole face & tongue were numb, couldn't talk, couldn't see well, eyes tearing. It was like novacain from the dentist! This sounds like what you described, and no one suggested TIA to me - just what might happen with the drug.

    After the 2nd infusion 3 weeks later, by other arm was unbelievably sore & had a lot of trouble swollowing. The sore arms too sore to touch and this took a month to heal. These were normal symptoms I was told by my onc. This was last April when the weather was still cool & I had trouble breathing when outside & facial muscles would freeze up. The 3rd infusion in May was the worst, so when it came time for #4, my WBC was so low the onc. said no more infusions, I was done.

    I was also on Xeloda too so don't know if the neuropathy in hands & feet were due to that or the Oxy. I took it until June when I developed low back pain & was told that was not due to chemo, but to stop the Xeloda anyway. It was my personal belief that this was a result of the chemo since it began when the Xeloda was upped to 3 pills in AM, 4 at night.
    I was prescribed Gabapentin, heat, cold, naproxin, vicodin, physical therapy, It finally went away after 3 months when we went to Las Vegas for the month of Sept. Could have been the climate change or maybe just time to go away.

    Now 2 weeks ago, the pain started in my groin. Stiff muscle, painful nerve so can't walk without pain. Again, my onc. said it wasn't due to chemo but due to nerve damage from the surgery (Blame the other guy!). However, my hands & feet are still numb & sensitive to cold. He said it would take a year to go away, but I've heard tell some people have had it 3 years out.

    Thankfully, no evidence of cancer. Had clean colonoscopy yesterday & don't need another for 3 years. All blood work has come back OK too, so they just want to check it every 3 months. Guess I'm really lucky! Have to be grateful for this since so many have suffered & not gotten good results.
    Good luck to you & let me know how things are going.
    Susan
    Rectal cancer
    Surgery Jan. 2010
    Permanent colostomy
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    Ask to slow down infusion
    Since none of us like to spend an entire day in the infusion room, oxaliplatin is usually given over just 2 hours. There is a rare syndrome that it can cause, and your description leads me to think you might fit into that (I did). It helped me tremendously to have infusion slowed down to 6 hours. It makes for a very long day of infusion, but is worth it. They might want to slow you to 4 hours and see if that works, rather than jumping all the way out to 6.

    I also developed an allergy to the oxy, so eventually I had to do a desensitization protocol, and every cycle I had to pre-treat for 3 days with Decadron and Benadryl.

    It is VERY likely that your episode was not a TIA, but was a reaction to oxy.
  • elaineG
    elaineG Member Posts: 20

    Ask to slow down infusion
    Since none of us like to spend an entire day in the infusion room, oxaliplatin is usually given over just 2 hours. There is a rare syndrome that it can cause, and your description leads me to think you might fit into that (I did). It helped me tremendously to have infusion slowed down to 6 hours. It makes for a very long day of infusion, but is worth it. They might want to slow you to 4 hours and see if that works, rather than jumping all the way out to 6.

    I also developed an allergy to the oxy, so eventually I had to do a desensitization protocol, and every cycle I had to pre-treat for 3 days with Decadron and Benadryl.

    It is VERY likely that your episode was not a TIA, but was a reaction to oxy.

    oxy side effects
    Hi kathryn and Susan
    Thanks to you both. I'm glad to hear that, as my gut feeling is, that it was most likely due to a reaction to the oxy drip on that day, and as my whole tongue was affected, not just one side, it further suggested it was only a side effect. I had my last drip slowed to over 4 hours as my arm had been so painful the first time - don't know if they will further slow it down to 6 hours - I could ask about that. The oncologist is suggesting reducing my dose because of neuropathy symptoms (which weren't too bad to be honest, though I know to expect them in future) The oncologist seemed to think as I'd had the neuropathy symptoms it would be best to reduce my dose (apart from the whole tongue thing, which I imagine we'll discuss again on Friday when I get my pre-chemo bloods done).
    Thank you so much for taking the time to reassure me. I have read everyone's profiles and see the journeys that you all have travelled. What a great site this is!There's a real sense of camaraderie!
    Thanks again
    Elaine
  • tuffoldbird
    tuffoldbird Member Posts: 7
    Side effects of Oxaliplatin
    Hi! I'm a "stomach" person, but check this board also as a lot of the treatments seem to be basically the same. I was on Oxy, Epirubicin, and oral Xelodo, with 6 rounds scheduled.
    I had relatively minor side effects from the first infusion (fatigue, numbness and tingling, reaction to cold on extremeties and inside my mouth - very similar to most. Coincidentally, on MY second infusion, I suffered what I can only describe as a total "mind-body disconnect." I couldn't talk, couldn't breath, had no control over my body, etc, and I honestly thought I was having a stroke! My hubby finally got me to the car, but when I couldn't make my legs work well enough to get into it, he "poured" me in and drove from the outpatient care center right around the corner to the ER. They checked me over and discovered an extremely low potassium level, so they tried to give me one of those big old horse pills that seem to be the gold standard of potassium treatments, and I tried to tell them that I couldn't swallow pills, let alone huge ones, but all kinds of random garbage came out of my mouth - I could hear it and realize that it had nothing to do with what I was trying to say, so they gave me the pill. Of course I choked on it and ended up getting the Heimlich Manuever (which by the way, hurt.) I was admitted to the hospital, where I stayed for three days - Happy New Year! They gave me some IV potassium, and things cleared up pretty quickly, then found a urinary tract infection that was "silent" as far as showing up in my pre-chemo labs, temp still normal, etc., but it finally cultured out in the morning of the 3rd day and they gave me antibiotics.

    The doctors were never 100% sure that I hadn't had a stroke or TIA, so I had to promise the doctor not to drive until I was done with chemo in return for him not turning me into the State, which would mean losing my license for a year. The end result was that they decided the symptoms were from the UTI and low potassium, and the oncologist reduced the dosage of Oxy a bit for the remainder of my treatments. I sailed through the remaining four and had two "insurance rounds," and am now on oral Xeloda. It was quite an experience, but sounds really quite similar to yours. Hope things work out for the rest of your chemo! Now that I'm in a position to look back on it, it wasn't all that bad, and certainly had a good result for me.

    Sandy
  • elaineG
    elaineG Member Posts: 20

    Side effects of Oxaliplatin
    Hi! I'm a "stomach" person, but check this board also as a lot of the treatments seem to be basically the same. I was on Oxy, Epirubicin, and oral Xelodo, with 6 rounds scheduled.
    I had relatively minor side effects from the first infusion (fatigue, numbness and tingling, reaction to cold on extremeties and inside my mouth - very similar to most. Coincidentally, on MY second infusion, I suffered what I can only describe as a total "mind-body disconnect." I couldn't talk, couldn't breath, had no control over my body, etc, and I honestly thought I was having a stroke! My hubby finally got me to the car, but when I couldn't make my legs work well enough to get into it, he "poured" me in and drove from the outpatient care center right around the corner to the ER. They checked me over and discovered an extremely low potassium level, so they tried to give me one of those big old horse pills that seem to be the gold standard of potassium treatments, and I tried to tell them that I couldn't swallow pills, let alone huge ones, but all kinds of random garbage came out of my mouth - I could hear it and realize that it had nothing to do with what I was trying to say, so they gave me the pill. Of course I choked on it and ended up getting the Heimlich Manuever (which by the way, hurt.) I was admitted to the hospital, where I stayed for three days - Happy New Year! They gave me some IV potassium, and things cleared up pretty quickly, then found a urinary tract infection that was "silent" as far as showing up in my pre-chemo labs, temp still normal, etc., but it finally cultured out in the morning of the 3rd day and they gave me antibiotics.

    The doctors were never 100% sure that I hadn't had a stroke or TIA, so I had to promise the doctor not to drive until I was done with chemo in return for him not turning me into the State, which would mean losing my license for a year. The end result was that they decided the symptoms were from the UTI and low potassium, and the oncologist reduced the dosage of Oxy a bit for the remainder of my treatments. I sailed through the remaining four and had two "insurance rounds," and am now on oral Xeloda. It was quite an experience, but sounds really quite similar to yours. Hope things work out for the rest of your chemo! Now that I'm in a position to look back on it, it wasn't all that bad, and certainly had a good result for me.

    Sandy

    Update...
    I am pleased to say that as of Friday last week, on my pre-chemo oncologist appointment, two oncologists told me that my wierd mouth symptoms were due to Oxy drip and NOT due to a TIA!! I was given the go ahead to drive again, which I gladly did and have been zipping about all weekend! I awaited my next chemo - today - prepared for any odd reactions that might arrive. But none of that was to take place - my white blood counts were down to 1.4!!! Chemo has been delayed a week - hopefully not longer!! Oh well...

    Elaine
  • lisa42
    lisa42 Member Posts: 3,625
    elaineG said:

    Update...
    I am pleased to say that as of Friday last week, on my pre-chemo oncologist appointment, two oncologists told me that my wierd mouth symptoms were due to Oxy drip and NOT due to a TIA!! I was given the go ahead to drive again, which I gladly did and have been zipping about all weekend! I awaited my next chemo - today - prepared for any odd reactions that might arrive. But none of that was to take place - my white blood counts were down to 1.4!!! Chemo has been delayed a week - hopefully not longer!! Oh well...

    Elaine

    praying for you right now
    Hi Elaine,

    I just read your post and am writing this at 11:20 a.m. PST (Calif.)- not sure where you live. In the event we're on the same time zone or close to it & you're getting the chemo as I write this, I am praying things will go much, much better this time.
    I am curious why you don't have a port- my onc said he would never give oxy to someone via the arm because it's too caustic and could do damage to the veins. The veins used in the chest where they put the port are larger and can handle it better. Was it your choice to not have a port put in or did your doctor not think you should have one?
    Just saying- I don't know of anyone with a port who had issues of the areas in the chest where it was going in, vs. you are having problems with getting it in the arm.
    Anyhow- regardless, I am praying all will go well for you.
    It's no fun, for sure. I took it when I was first dx'd in 8/07- I had an allergic reaction to it and, like Kathryn mentioned, got the decadron and benadryl treatment beforehand, then infusion was stretched out over 6 hours.

    Hugs and prayers going your way-
    Lisa
  • elaineG
    elaineG Member Posts: 20
    lisa42 said:

    praying for you right now
    Hi Elaine,

    I just read your post and am writing this at 11:20 a.m. PST (Calif.)- not sure where you live. In the event we're on the same time zone or close to it & you're getting the chemo as I write this, I am praying things will go much, much better this time.
    I am curious why you don't have a port- my onc said he would never give oxy to someone via the arm because it's too caustic and could do damage to the veins. The veins used in the chest where they put the port are larger and can handle it better. Was it your choice to not have a port put in or did your doctor not think you should have one?
    Just saying- I don't know of anyone with a port who had issues of the areas in the chest where it was going in, vs. you are having problems with getting it in the arm.
    Anyhow- regardless, I am praying all will go well for you.
    It's no fun, for sure. I took it when I was first dx'd in 8/07- I had an allergic reaction to it and, like Kathryn mentioned, got the decadron and benadryl treatment beforehand, then infusion was stretched out over 6 hours.

    Hugs and prayers going your way-
    Lisa

    oxy side effects
    Hi Lisa
    Thanks for replying. With regard to the siting of my drip, my chest has never been mentioned as an option by my oncologist. The guidance notes I was given prior to my chemo seemed to point to the arm as being the norm, and a painful arm is mentioned as a side effect, which I indeed got the first time, then had my drip slowed to 4 hours because of this, which helped. As I'm new to all this, it's interesting to hear of different methods/treatments out there. As I live in the UK, I don't know if there are differences in how things are done??
    Anyway, all the very best to you Lisa. I really hope you are successful in your quest to find a trial that you can take part in.
    Take care
    Elaine
  • chicoturner
    chicoturner Member Posts: 282
    Hi Elaine, sorry you are
    Hi Elaine, sorry you are having such a time with the one drug that has such potential to take care of the cancer. I was given oxy and had a very unusual experience. I had severe chest pains and pains down my left arm. It would begin about40-48 hours after the infussion and intermitently for about 8-12 hours. Each episode would be about 20 mins in length and then I would sleep until it started again. I did end up in the hospital and had my heart checked and rechecked, but it was determined it was the oxy. My doc said he had never seen that before. I kept up treament for all 12 as the scans showed incredible decrease in the lung tumors and spots! When I finished the last treatment all but a speck was gone!! Unfortunately, it didn't stay gone for me, but the drug did its job. Best to you! Jean
  • elaineG
    elaineG Member Posts: 20

    Hi Elaine, sorry you are
    Hi Elaine, sorry you are having such a time with the one drug that has such potential to take care of the cancer. I was given oxy and had a very unusual experience. I had severe chest pains and pains down my left arm. It would begin about40-48 hours after the infussion and intermitently for about 8-12 hours. Each episode would be about 20 mins in length and then I would sleep until it started again. I did end up in the hospital and had my heart checked and rechecked, but it was determined it was the oxy. My doc said he had never seen that before. I kept up treament for all 12 as the scans showed incredible decrease in the lung tumors and spots! When I finished the last treatment all but a speck was gone!! Unfortunately, it didn't stay gone for me, but the drug did its job. Best to you! Jean

    Thanks Jean
    Hi Jean
    Side effects like these certainly show how powerful chemo is, don't they?! I just keep telling myself if they're doing that to other parts of my body they must be zapping my cancer cells! Unfortunately, my white blood count is still low, so I don't even know if my chemo next week will go ahead - I can't wait to get back on track, whatever side effects it throws at me!! I worry about this break in treatment.

    Thank you again, and I wish you all the very best!
    Take care
    Elaine
  • Lori-S
    Lori-S Member Posts: 1,277
    elaineG said:

    Thanks Jean
    Hi Jean
    Side effects like these certainly show how powerful chemo is, don't they?! I just keep telling myself if they're doing that to other parts of my body they must be zapping my cancer cells! Unfortunately, my white blood count is still low, so I don't even know if my chemo next week will go ahead - I can't wait to get back on track, whatever side effects it throws at me!! I worry about this break in treatment.

    Thank you again, and I wish you all the very best!
    Take care
    Elaine

    Hi Elaine
    Good to see you posting again. Sorry about those white blood cells being low. Hope you get back on track soon.
  • elaineG
    elaineG Member Posts: 20
    Lori-S said:

    Hi Elaine
    Good to see you posting again. Sorry about those white blood cells being low. Hope you get back on track soon.

    Hi Lori
    Thanks! I'm keeping everything crossed for Monday!

    This is such a brilliant site - so much positive thinking and such a wealth of experience too! Add to that a fair bit of humour (by the way, I haven't lost my whistle yet ;), glad you got yours back),and the mix is just right!

    Elaine
  • claud1951
    claud1951 Member Posts: 424
    elaineG said:

    Hi Lori
    Thanks! I'm keeping everything crossed for Monday!

    This is such a brilliant site - so much positive thinking and such a wealth of experience too! Add to that a fair bit of humour (by the way, I haven't lost my whistle yet ;), glad you got yours back),and the mix is just right!

    Elaine

    Elaine,
    I'm with Lisa on the

    Elaine,
    I'm with Lisa on the port. Please ask your Onc about it. For me, personally, it was so much easier and as Lisa said, they usual don't care to give Oxil in the arm. The port goes into the upper chest just below the skin (easy procedure, for me anyway). The Needle is put into that (sound worse than it is).

    Best of luck with your treatments and keep moving forward.

    Claudia
    Stage 3
    NED (no evidence of disease) for 3 1/2 years!