1 (edited by JeffG Wed, 31 Jan 2007 18:15:52)

Topic: Oxaliplatin and oral Xeloda

Had my first ride on this stuff.  Ended up doing ER run for severe not stop water loss alis ( Royal Flush). They filled me back up with fluids, gave me some potassium and a bunch of immodium pills to turn off the water faucet.   I won't go in to detail of other side effects.  Stubborn as I am, will give it another whirl.  Saw Oncologist today at 3pm and I guess we decided to try again on Valentine's Day!! How sweet it Is____.  Going to cut both medications, Oxal 40% and Xeloda 50%.  I guess if I didn't think it really grabbed some of those cc cells, I probally would Have opted the other direction.  It just seemed that right from the start my body was telling me this regimen was on a mission.  I understand that others had dosage adjustments for different side effects.  I just kinda wished they had started me a little lower dosage ,but oh well, Tomorrow is always a new mystery.  By the way these meds will cause ocassional PVCs and PCAs with some people due to nerve signalling interuptions or hiccups  you might say.  (premature  ventricular and cardio arythmia)
I was told nothing to worry about  as I just had stress test completed and all was fine.  But As you all know the patient is her/his best advocate.  Sorry rambling again!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Oxaliplatin and oral Xeloda

Oh Jeff! Sounds grim!
What are PVAs and PVCs?
Valentines Day ay??!! How very sweet!
I hope you have recovered from the experience now, and that the next treatment is not so grim!

Re: Oxaliplatin and oral Xeloda

Jeff - I have had a much easier ride with my first infusion of Oxaliplatin, and oral doses of Xeloda - finish Xeloda this Friday, and I have my next infusion two days after Valentine's Day!  (But I get to see my doctor on VD; you are right - what a way to spend the day!)  I have had the cold sensitivity and all, and definite loss of appetite, but nothing compared to what you describe.

One thing that's helped with my appetite and to offset the mild nausea I've felt is a pair of "sea bands" which are knited bands with a hard plastic knob that goes against the inner wrist in the spot where there is an acupressure point for nausea.  No drugs involved, and for me, it's helped me eat more normally.  I bought mine in the "nausea drugs" section of my local drugstore, and they are also available online.

I hope that my new tumor is being knocked on its butt with these two drugs!  And yours, too!

Re: Oxaliplatin and oral Xeloda

Lynne,  Thanks for the input on the sea bands.  Hopefully this time around it won't be so bad.  I think  4,000  mg of xleoda (2,000 every 12 hours) was a little high.  I think the recommended dosage is like 1250 every 12 hours to start off with.  And the fact he is going to drop the Oxy 40% this next time around will help as well.  I feel great today. Had labs done and all normal excet platelets and wbc on the low side but platlets have increase slightly since last week.  So I'm good to go on Valentines day.
I can say, I sure felt it attacking the tumor area, Just maybe a little to much at once Ha!  Keep on trucking! right on over that tumor.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Oxaliplatin and oral Xeloda

I'll add some of my experiences to this thread.  I have entered some of this information on other posts in this and other Forums on this great site, so I apologize if you have already seen this.

I have had quite a bit of "experience" with the Oxaliplatin and oral Xeloda combination since I was on a clinical trial with that combination from May 2004 though October 2005 (16 months) after which the trial was stopped because the spots were not measurable, but also because my platelet count did not get up fast enough for the trial treatment intervals.  Spots began showing up again in Feb 2006, and I went back on that treatment, off study, for two months, but that chemo combination no longer worked for me.

Jeff mentioned the amount of Xleodia he was given at first.  In comparison I was started on a much higher dose, which was reduced 20% the following month, then reduced another 20% several months later, with the final 20% reduction shortly before the end of the clinical trial in Oct. 2005.  When I resumed the chemo in 2006 the Xelodia was at the final reduction rate, which was:  36 (500mg) tablets (total 180,000 mg) taken every 8 hours during a two and half day period following the Oxaliplatin chemo.

Yes I was dealt lots of Royal Flush hands as Jeff calls it.  I was hospitalized once to get my fluids up.  Afterwards, I took immodium on a regular basis every day (with the same regularity as the diaherra).   I also drank a lot of Gatoraid or some cheaper drink with lots of electrolytes in it.  Over the ensuing months I got used to that regimen. 

As I mentioned my platelets would get very low and take a few weeks to get back to the trial threshold of 75 for the next treatment.  It took 7 weeks at the end for the platelets to get high enough.  My white blood count was OK (although it had gone too low during a previous treatment with Gemzar -- a drug which did not work at all for me.)

Yes my appetite was down, and is still recovering very slowly, and of course I had the neuropathy in my extremities (especially my fingers).  Trouble buttoning my shirt, etc.  That too is still there (my last treatment was Oct 2005), but it's not much of a problem unless I think about it.  There were many other side effects too, of course.

One final caution for those on Medicare.  While I was on the study the drugs were paid by the study.  But when I resumed Oxaliplatin "off study" in Mar. 2006, Medicare would not pay for that drug.  They said it was "off label" and not approved for CC (bile duct cancer in the liver), although it was approved for colon cancer in the liver.  They said the decision was not appealable.  My only options were to convince my secondary insurance to pay, negotiate with the drug company, or pay the bill myself.  It was then I found the patient/retail cost of Oxaliplatin for just a single treatment was $12,000.  I later found the hospital "only" paid $3,400 per treatment.  (Pretty big mark-up).  I was fortunate because my HMO agree to pay that cost per treatment.  I also found I was fortunate, not only because the HMO paid, but because I was on a secondary insurance which would pay.  Earlier in the year I had the opportunity to get out of the HMO which required referrals and go to a secondary insurance not requiring referals.  Fortunately I did not switch insurance companies.  Had I done so, I found the reputable company I was thinking of switching to only paid for drugs approved by Medicare, and since Medicare did not approve of this in the first place, the secondary insurance would not have paid either.  In that event we would have to work out something with the drug company or I would have had to pay $12,000 per treatment.  Again I apologize if you have seen my post on this issue elsewhere, but it was a very stressful "learning experience" during a very stressful time.   It is so hard for senior citizens to pick insurance programs when they don't know what medicines/chemos they'll be on.

Jeff, Lynne, and all the rest of you who are on this and other treatments -- I want to wish  you the very best.  Never give up hope.  I've also mentioned that new treatments become available continually.  Most of those treatments which have worked for a period of time for me were not available -- even in trials when I was first diagnosed with CC in March 2001.

Jerry

Re: Oxaliplatin and oral Xeloda

As if you don't have ENOUGH to cope with, having CC!
The NHS is not without fault, I know, but I read stuff like that, and feel very VERY lucky that we have the NHS!(I refer to your health insurance nightmare).
Hope all is going well for you!

Re: Oxaliplatin and oral Xeloda

Kate G

I fully understand your comparisons to the medical system we have and the one in Great Britain.  Our youngest daughter, husband and their 7 months old son live in Windsor, about 9 blocks from the castle.  Your system has a lot of good things going for it.

Jerry

Re: Oxaliplatin and oral Xeloda

I don't want to start a political point but as a UK resident I have to say that the UK NHS is dreadful.  A few months ago I came accross an independent report by a university in Sweden which examined cancer care throughout the European Union and concluded that Gernany was at the top of the list ie best and UK was at the bottom of the list (alongside Poland).

In July 2005 I had jaundice and was feeling very poorly but was told that I'd have to wait 6 weeks to get a CT scan under the NHS.  I paid to get one privately and 2 days later CC was diagnosed.   In September 2005 a surgeon offered to carry out a resection but under the NHS I was again faced with a 6-week wait.  Knowing that the tumour was growing, and after 6 weeks may not be resectable, I paid for the surgery privately (and had a succesful resection 1 week later).

Many of the drugs mentioned by US participants to this website are simply not available to CC patients under the NHS - eg Avastin, Erbitux, Sorafenib.  But, if you can afford it,  they are available in the UK privately.   Such drugs are routinely used in other EU countries eg France, Germany, Spain.

I have paid National Insurance contributions all of my working life but the NHS has let me down badly and continues to let me down.

Geoff

Re: Oxaliplatin and oral Xeloda

Geoff

i totally agree with all you say .

Jon was referred for a scan in July 05 and had in in Jan 06 ! Our GP did not think it was that serious I think and was horrified when he had to tell us the diagnosis in Mar 06. We were told the chemo would most likely have no effect at all ,that the tumour would not shrink to enable a resection to take place .  I asked about the various drugs we had read about on this site, Avastin xeloda etc  and we were informed he could not have them due to NICE guidelines .

We were lucky enough to find Prof Lodge on the NHs and as I said before despite the outcome it was the right move for us

I work in ther NHS I am  a nurse and i agree with you, feel very let down . Jon was treated at one of the best UK cancer centres ,we never saw the same Dr twice no personal interaction at all
I do have to say that in Leeds everyone in the team from the tea lady to Prof Lodge was wonderful , such a difference attitude to us both

Rant over sorry

Alison

Re: Oxaliplatin and oral Xeloda

I have to say that my husband's experience with the NHS was different, as far as speed and treatment was concerned. He was diagnosed on Nov 5th 2005 and had an operation on Nov 21st. In the intervening period, he had ercp to open the bile duct (failed) 3 CAT scans, a laporascopy and an MRI scan. He was treated by the liver team at a London hospital on the advice of a private consultant. His view was that because this is a rare cancer that my husband should not have private treatment, since he needed the skills of a multi-disciplinary team who were used to working together and who would evaluate as a team. The nurses are also specialist in liver disease.
HOWEVER once the treatment could no longer procede because on operating they found mets on the omentum, the subsequent care in hospital was not good. Food was appalling, not enough nurses, impossible to sleep in a ward of 8 etc 

I have concluded from my own experience and those of other people I know that if you need treatment  where they can fix you up and send you home as with heart disease or hip transplant, then the NHS works well but with chronic disease especially cancer where there is no quick fix, then you have a point.

Re: Oxaliplatin and oral Xeloda

I can't resist joining in - I am an ex nurse (left the profession some time ago) and I have some stories that would horrify all of you..

I feel very angry about the way the NHS has let down my Dad and that he has had to use his hard earned savings to pay for his treatment.  He has effectively paid twice..

I don't know that I would agree that the NHS is ok for some elective procedures - I used to work on an orthopeadic ward, I saw patients waiting far too long in agony for vital surgery eg hip replacements, even when they did finally get to the top of the queue they were then subjected to delays and cancellations (often after they had already had their pre med).

I believe that the NHS is an institution that is outdated and incapable of survival in todays world of modern medicine, not only are patients expectations raised (Drs love the internet!) treatments are now so advanced, a system designed in the post war era can simply not keep up not matter how many faceless beaurocrats they employ!

We should follow the German model and abondon the NHS.  Rant over, just wanted to add my views!

Jules