Topic: Has anyone "maxed out" on Oxaliplatin?

Hi all -

I've been reading this board off and on for a while.  My little bro (25 years old) was diagnosed with cc almost exactly 6 months ago.  He's been handling his chemo routine like a champ:  gemcitabine (sp?), avastin, and oxaliplatin.  He's had almost no side effects and has been seeing some remarkable shrinkage (>30%).  Obviously, we're all thrilled.  The only problem is that the neuropathy that goes along with oxaliplatin is getting worse.  What started as mere tingling in his fingers and toes in the cold for a few days following treatment has become a constant tingling that worsens in the cold - he was unable to button his jacket the other day.  The oncologist is worried about keeping him on the platin for too much longer because of it.  We knew this day might come and now it seems to be upon us.  Has anyone been through this?  What is on the other side?  Did the cancer come right back / stay stable / SHRINK?!  I'm just so worried that the chemo change will translate into something bad with the cancer.  As you all can probably imagine, when dealing with this type of thing, change is always scary.

Thanks -
Mels

Re: Has anyone "maxed out" on Oxaliplatin?

mels,
I am not an expert on this but you might want to ask the oncologist about alpha-lipoic acid to help with the neuropathy.  If so, when it can be taken so that it may not interfere with the chemo. 
Good Luck
Marion

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Re: Has anyone "maxed out" on Oxaliplatin?

Mels,
This CC reacts differently with different people.  I have made it over the the 7 year mark since being diagnosed.  I decided no treatment at first, then 2 years of chemo and now doing 3-D  IMRT.  #1 surgical resection if possible, #2 Chemotherapy with it's side effects, #3 Radiation treatments to shrink and hopefully kill the cancerous cells without doing to much damge to the good cells.  Looking back I'm at the stage of where most would probally throw up their hands, but I'm not quite ready for that yet. I'm hoping the radiation will shrink and kill the liver tumor and the multiple nodules in my lungs stay stable or slow growing.  I will most likely go back to Chemotherapy after radiation.  This appears to be the pattern for most as their has been some success stories.  For the majority it's slow and torturing and other it's fast spreading and furious.  The platin drugs definitley cause neuropathy.  Again it's different on everyone.  I have permanent nerve damage without a doubt.  But I can still function just fine.  When ever I feel the pain and tingling I go to a different place and try to ignore it by doing something else and moving around. Sometimes it works and then times it don't.  It's like carpel tunnel syndrome I had on my left wrist avoid hot and cold.  But with this Chemo it's different as it can act up irregardless of temp.  Lack of movement I found bothers me.  Moving around I feel great then after I wind down it really bothers for a while.  Dr. prescribed pain meds is where I'm also at. Mels, Please forgive me for being so direct and to the point, but your younger Bro should'nt have to go through this . None of us should.  Be strong and don't give up the battle as there has been Like I said some success stories.  There has also many who have been battling for years.  God's Speed to your brother and you.   Jeff

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

Re: Has anyone "maxed out" on Oxaliplatin?

Mels,

Mark's was on the same regimen as your brother for several months with good results as well.  However, his neuropathy was starting to not go away between treatments, then the chemo stopped working anyway, so we stopped the treatments, the neuropathy continued and got a little worse.  Our oncologist told us that is would gradually dissipate with time and then it might/might not go away all together. 

Mark told me on Saturday that his neuorpathy has completely gone away - he has been working with a naturopath as well.

I think this is your brother's first shot at chemo?  If it is then he still has many options to look at.  You will probably want to go into the patient profiles and find out what other patients are using and then take those options in to his oncologist and find out what direction he wants to go.  You still have good options available, in 5FU or Xeloda, both have significantly less side effect than oxaliplatin, he will probably find them much easier to tolerate - he can keep the avastin as well as the body does not build up a resistance to it.

Let us know what you decide.

Stacie

Re: Has anyone "maxed out" on Oxaliplatin?

I was on Oxaliplatin and capecitabine from May 2004 until Oct 2005 under a clinical trial.  I was taken off because the spots were almost too small to be seen, but also because my platelets began recovering so slowly so my treatments were too far apart -- 7 weeks at the end.  The Platelets had to be 75 for treatment.  The CC started showing up in Feb 2006, and I went back on the same chemo, off study from Mar - May, 2006 -- but was taken off because the drugs were no longer effective for me.  Since then I've been on Panzem, but that didn't work, a couple weeks ago I had a SIR Spheres treatment.  Incidentialy I've had CC since Mar. 2001 -- a couple operations and quite a few clinical chem trials. 

My neuropathy is slowly getting better all the time, but it does take some time.

Jerry

Re: Has anyone "maxed out" on Oxaliplatin?

Thanks for the info.  I'm just scared - being taken off of something that's seemed to work seems like the beginning of the scramble... trying to find something else that may not be as effective...

Stacie - I've been following Mark's blog over the past few months.  It's been helpful to me because it seems as though he and Chris started at exactly the same place - lesions in the liver with some in the omentum, also.  Have his doctors said anything about surgery?  I think I read that he had an attempt a few months ago?  If/when he will become a candidate again?  That seems to be the question that no one around me wants to ask.

Thanks again!  Happy Thanksgiving.

- Melissa

7 (edited by stacie Tue, 21 Nov 2006 18:05:20)

Re: Has anyone "maxed out" on Oxaliplatin?

Well, really they can only consider you a candidate for surgery if you don't have metastatic disease.  Knowing that it has spread at all means that it is in places that they can't see or guess, so while surgery can debulk what is there, it can't get all the seeds that can't be seen. 

Ideally, they would debulk you in the beginning and you would take your chances that the chemo would work and kill the rest, but surgery then means that you can't use some of the targeted therapies, like Avastin until you heal.  We feel like this really helped boost Mark's chemo results.

It's just all so intertwined that it is difficult to figure out.  At this point, we are hoping that the diet will starve the cancer and the other agents the naturopath is using will shrink the rest.  Our naturopath is very interested in having Mark do a procedure in Germany that uses hyperthermia to kind of melt away the solid tumors, but we will know where we stand and if he will be able to do that in another week or so, when we see the results from his scan.

Please feel free to ask anything, and don't be afraid just keep looking and asking and pressing forward - being afraid tends to make us check out and he really needs everyone around him checked in and ready to do whatever is necessary.   

At least for me I've found that the more I search, the more questions I ask, etc.  the more in control (or perhaps hopeful) of the situation I feel, this isn't even considering the way Mark and Marianne feel - this is strictly speaking from my role as a sister. 

The irony is that cholangio is something over which we have no control and I think this is one of the hardest parts of having this cancer for the patient - no control.

Re: Has anyone "maxed out" on Oxaliplatin?

Saw my regular  oncologist today.  He poked and prodded on my liver and could not get any pain out of me, so he thinks the 3D conformal radiation did some good.  CT scan and blood work next week and then he wants to try Oxaliplatin and pill form of Xeloda the week after.  He said normally this regimen is used on colon and renal type cancers but has been showing promising results with CC.  Talked with Nurse about it and she said they were using on a patient currently and getting good reponse.  I've read  the different results people have had on the site showing some with better response than others and then stopped working, etc.  Well, I decided I will give it a whirl.  We'll see how it responds on me.  Just another tid bit; while sitting in his office he recieved a call from some chief of oncology at some major hospital and the overall conversation was about some pharmicutical company trying to get their hospitals to try a new chemo drug except it wasn't new at all, just another name in which they already had the generic form of the same thing.  I heard my Oncologist make the  comment can you believe it, you know those companies will do anything to sell their drugs.  I've always felt that way about many companies and products.  At the same time it made me feel good that my Oncolgist wasn't having the wool pulled over his eyes and he has a genuine concern and knowledge to support his patients.  Well if anyone has anything infor , good or bad about this regimen of tx please let me know.  Having already used carboplatin I'm aware of the nueropathy and not looking forward to it at all.  I'll still have to keep my nutritional side rolling along. Got to go! Keep on trucking everyone!!!  JeffG

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

Re: Has anyone "maxed out" on Oxaliplatin?

Great to hear about the radiation!  Good luck with the CT scan.  We'll have to start looking into things like radiation, etc.

Stacie - How is Mark doing?  I've been reading his blog and things did not sound good.  Please let him know that I'm thinking of him all the time.  He started with the same diagnosis/prognosis as my brother, just a couple months earlier.  I've been looking at him as though he's foretelling my brother's future... 

- Melissa

Re: Has anyone "maxed out" on Oxaliplatin?

Mels,
My husband was on the same regimen with the exception of Avastin.  He was able to complete a 6 month cycle without interruption.  At the end of the 6  months, there was no evidence of the cancer.  He did have neuropathy that increased slightly over time.  He was able to handle it, although it was annoying.  It seemed to come and go at the beginning and then remained more constant once treatment was completed.  5 months since this treatment completed, the neuropathy has just about disappeared although the cancer has reappeared.   He has just started Erbitux and Irrinotecan.  Best of luck to your brother.
Joyce

Re: Has anyone "maxed out" on Oxaliplatin?

Joyce -

I'm sorry to hear that your husband's cancer is back, but I am encouraged to hear that it went away in the first place.  How extensive was it to start? 

My brother decided to discontinue the Oxaliplatin and is now taking just Avastin and Gemzar.  We can hope that it's the gemzar that's working, right?  I just found out today and am having a really tough time with it.  I don't know how he stays so strong!

- Melissa

Re: Has anyone "maxed out" on Oxaliplatin?

Happy New Year Melissa,
My husband's cancer was located in the left lobe of his liver. (4cm) and in 3 lymph nodes.  He had the tumer removed before he started any chemo or radiation.  Best of luck to your brother.  It seems that almost everyone is able to tolerate the gemzar.  It's the oxaliplatin that is so rough.  I agree that it takes a tremendous amount of couage to face this daily battle.  I am in awe of my husband's determination.  What a great example he is to our children.
Joyce

Re: Has anyone "maxed out" on Oxaliplatin?

xeloda and oxy are working like crazy for me. My ca 19-9 levels are down from 508 to 208 over 6 months. The neuropathy is definitely an issue but I am coping because I have had no tumor growth and some shrinkage.  Everyone's cancer is different but it is working for me