Topic: Gemzar/Oxaliplatin treatment

Hi:
I've only seen 1 posting for this "cocktail" so I'm making another posting. I will be asking my main onc why she chose oxaliplatin over cysplatin. I'm sure there's something I don't know (of course, there's LOTS I don't know).
Last week I had my initial chemo treatment. 30 min. of prep drugs (benadryl, anti-nausea meds). Then the Gemzar started. They pumped it thru at 100 min. rate. After about 12 min. it burned my arm so bad they had to move the i.v. I decided there and then to get a port before the next chemo treatment. I made it thru the rest of the Gemzar without problem, then 2+ hours of Oxaliplatin. After it was done I felt fine, except for the sore bottom and back from those "comfortable" chairs. 5 hours is just a little too long.
I brought snacks to eat as I had no idea how I would feel. During the entire time I ate all of the crackers and granola bars I brought with me. I wished I had some "real" food.
I had a ride, as I didn't know what to expect, and the drive is about an hour to treatment. I was tired from the benadryl, so was happy I had a ride home and didn't have to drive.
The next morning, per dr's orders, I took anti-nausea meds before getting out of bed. I felt a little queasy on and off, but never vomited. Ate light: had chicken noodle soup for lunch. Then the side effects that I experienced hit. There are a number of side effects to worry about. Nausea is number one: I am happy to report I never vomited the entire time. Unfortunately, I did experience some heavy-duty diahrea for 2 days. At least I know not to plan anything for 2 days after chemo. Sensitivity to cold is another side effect, and it is very strange to feel like your fingers are burning when touching something cold. I drank room temp water and other drinks for 2 or 3 days. And a rare side effect is a rash, which appeared on my hands and left arm on day 3. Dr. is not sure if that is a side effect or just bad timing. I guess we'll see in another week.
All in all, the side effects were very bearable. I was relieved that it wasn't as bad as I had been expecting.
Met with "local" oncologist today to look at blood work and discuss my side effects. My white blood and platelets are already down. So I already have to watch who and what I come in contact with. No raw foods, including fruits and vegetables. He seemed pleased with my report. He said my future chemo treatments shouldn't be much worse than the first one. If I didn't feel nauseous, I probably won't. I'll take the hives over nausea any day!
Two side effects I haven't experienced, tho, that I WILL experience (according to him) are hair loss and neuropathy. The amount of hair loss is unknown, but I am preparing myself and looking to have some fun with wigs. The neuropathy is a side effect of the Oxaliplatin and will happen. It will help the docs determine when I need a break from the chemo.
That's all for now. I get the port put in and my next chemo is the 22nd. I hope all goes just as well as last week. Then I will ask about future scans to see how treatment is affecting the tumor. Hopefully the chemo works well inside and starts shrinking that darned tumor so we can operate.

Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

I never lost ANY hair during my year with Gemox! After 13 rounds I had to stop due to persistant neuropathy. Now, 4 months after last treatment, the neuropathy is backing away each day. Remaining some, like maybe 25%.
On the Sloan-Ketteing website I found a list of herbs linked to Pubmed. Started with Astragalus and Ashwaganda as complemenary medicine. I

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: Gemzar/Oxaliplatin treatment

Maria:
Thanks for the info. And since the only thing I've ever really been vain about is my hair, I really don't want to lose it! So hearing that YOU didn't lose yours gives me hope, even tho the doc says I will.
After reading from Karen in my other posts, I really want to get things under control so we can operate again and get my infusion pump working so I don't have to deal with the Gemox. Then hopefully I don't have hair loss or neuropathy. I will actually be getting a light dose of chemo during the pump use, but I'm not sure if it would stay as Gemox or not. And it will supposedly be light. I know the neuropathy comes as a warning that the body can't take any more of the oxaliplatin, so hopefully we can get me off of it before that happens.
I'm happy to hear your neuropathy is getting better. I was not looking forward to those side effects, either, as I know that can be quite painful. I hope since the neuropathy is down to 25% that it's only annoying now and not too painful. And I really hope it continues to improve daily.
I will look into Astragalus and Ashwaganda with my onc. She wants to know before I do any "alternative" meds so I will clear it with her. But since it's on SK's website, she should be okay with it, I would think...
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

4 (edited by Maria Wed, 15 Jun 2011 03:08:52)

Re: Gemzar/Oxaliplatin treatment

The information I got before starting Gemox was that it rarely causes hairloss!!
The neuropathy I got was never painful, luckily, just annoying. Now I have to really put pressure to my fingertips to feel it at all!

Before starting with Astragalus I had to stop Xeloda+Gemzar after one week due to neutrofils at 0,7-0,8. This time, for example, neutr was 3,8!!!! after one week and today I found out that mondays bloodcount after two weeks showed neutr 1,5! Not a little improvement I would say, but a HUGE one : )
AND I feel much stronger, not to say completely healthy.
//Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: Gemzar/Oxaliplatin treatment

So glad that you are feeling better. I have started to deliberately acknowledge and count my blessings on a daily basis. This is a blessing to hear. Thank you for sharing about feeling stronger and better. Blessings, Susan

Re: Gemzar/Oxaliplatin treatment

Susan:
I count my blessings every day also. I am so lucky that my side effects so far have been minimal. I would say that 3 days of exhaustion and 1 week of not being able to eat, touch or drink anything cold is not a bad tradeoff to fighting cancer and hopefully winning.
I have a CT Scan on the 27th to see how the treatments are doing. It will be after 4 treatments, so not expecting a huge improvement, but hopefully there's no spread of the tumor cells.
I still have some energy 10 days out of 14. Not enough to do my gardening (said gardens are starting to look like forests! UGH!) but I do still go out 2 nights a week and visit with all my dancing friends. I stay for about an hour before I'm too tired and figure I better not push it too much or I'll be back in the hospital with something stupid. So I still have my fun, but it is very limited. I've decided that cancer has taken enough from me, and I'm not giving anything else up without a fight.
I figure there will come a day (hoping not, but being realistic) that I won't have the energy to go out and try to have fun, but I'm holding onto part of my routines as long as I can.

Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

Kris, I can only say that you are AWESOME!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Oxaliplatin treatment

Well, the third chemo treatment brought a new side effect. Not only was I nauseous and actually vomited for the first time from chemo, but the anti-nausea pills didn't control it (It wasn't too bad, but still: it makes me realize things are going to progress). The new side effect was a little more disarming. I am left handed. Shortly after chemo, I had spasming in my hands and calves. My calves re still spasming, and it's been since Wed. But that isn't what concerns me. My left hand went "dead" intermittently. It would fold in on itself and I couldn't do anything with it except open it with my right hand. But I couldn't feel it. It would last for a few minutes then be okay for a while. This happened 3-4 times on Thurs. and twice on Friday. The Dr. seems to think it might be related to the chemo. After all, neuropathy is a side effect of the Oxilaplatin. Although this isn't exactly neuropathy from how I understand it, I guess it's related. But it's kind of scary since this is only 3 treatments. If it gets much worse, I'm afraid I won't be able to drive.
My only hope is that the CT scan on the 27th shows some progress so we can do surgery to repair my veins or remove the tumor (which would be a reach) but I sure hope we cn get my body to cooperate so I can get the pump working so I can stop with the GemOx treatment.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

Kris, I had Gemzar (only) for six months on a two on/one off cycle.  We started with a 3 on/1off cycle, but blood chemistry got really hammered and had to back off to 2 on/1 off.  Platelets and white cells were depressed most of the way.  Mostly wasn't too bad, but the anticipation started to build, and in one of the last few infusions I tossed my cookies very suddenly.  I had minimal hair loss, which reversed once the chemo stopped.  You're on a tougher regimen, so I would expect more side effects.  I hope the side effects get no worse.

Good luck.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Gemzar/Oxaliplatin treatment

4 GemOx treatments and the neuropathy is getting worse. My onc is getting concerned. But on a GREAT note, my tumor has strunk from 5.4cm x 4.3cm to 4.4cm x 3.3cm!!! We are discussing my options for surgery or another embolization to try to get my body to cooperate so we can use the liver infusion pump.
I read the CT scan report after meeting with her and have a call in to find out what the "indeterminate lesion of 1.8cm x 1.1cm" on the report could be. Is this a result of the chemo? Do you get lesions from the chemo killing good cells?

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

Hi Kris,  Sorry to hear the neuropathy is getting worse but so glad to hear the tumor has shrank!! My husband was on gem/cis and experienced worsening neuropathy throughout chemo. He had 8 cycles which he completed on May 18th. The neuropathy has improved steadily since then. How many cycles are they doing for you? Is the lesion in the liver? Hopefully your doctor can give you answers about that.  My guess if they said "indeterminate lesion" they are not thinking it' cancerous. Chemo is definitely hard on the body, my husband and I like to blame lots of things on the chemo -lol. Take care and keep kicking butt! Nancy

Loving my husband from afar.

Re: Gemzar/Oxaliplatin treatment

Kris...I believe the indeterminate lesion could be either, benign or malignant and to me it means that the glass if half full.  You are doing so well and I am thrilled to hear that either, embolization or surgery may be an option for you.  Congratulations.
The peripheral neuropathy has been discussed often on this site and it can be rather bothersome.  Wearing gloves when touching warm or cold things may be of help to you.  Additionally someone had spoken of Lidocaine patches in order to relieve the pain. You might want to discuss this with the physician.  But there are also other drugs available for symptom relieve. Kris, I am wishing for continued shrinkage of the tumors in order for you to finally receive the long awaited pump. 
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Gemzar/Oxaliplatin treatment

Hi,
I am a patient also.  May I suggest you call the oncologist to clarify the 1.8cmx1.1cm lesion again to see whether it is cancer or not.
I did do a research on your posts and you had mentioned that you have 2 oncologists;Dr, Lee and Dr. Kemeny in 2 different locations.May be you can consult them both.
If they are not sure,and if your insurance policy allowed,get a PET scan done then will know for sure.
This suggestion was also mentioned in one of the member called cobbmkc@mchsi.com on 6/19/2011 under discussion forum when she answered your questions. She wished she had done a PET scan when she discovered nodules in her lungs while she was still on the liver FUDR pump.

As Marion said,the lesion may or may not be anything; but I think PET scan will be a good idea if the 2 oncologists have different conclusions about that lesion and especially you had mentioned on 6/19/2011 about " cancer had spread to the surrounding lymph nodes."
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Gemzar/Oxaliplatin treatment

My main oncologist (Dr. Kemeny at Sloane Kettering) seems to think the lesion is not important. She has scheduled another CT scan for Sept. 19. After thinking about it, I feel that this is probably caused by the chemo attacking a weak area of the liver. Since the chemo did such a good job in shrinking the tumor, I can't imagine another tumor growing at this time. Dr. Kemeny says if it is still there on the 19th of Sept. we will look further to figure out what the problem is. I trust her judgement, since she is one of the best oncologists in the area when it comes to cholangioicarcinoma and other GI cancers. So I am trying not to worry about the lesion and just keep envisioning the tumor shrinking.
I have the embolization scheduled for this Thursday and am SURE it will work this time! Then a pump study and then we will start me on the FUDR thru the pump. That will help with all the side effects since I will hopefully be getting a lesser dose of the oxaliplatin during this phase of treatment.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

Hi Kris, I want to wish you the best of luck on Thursday, with your wonderful attitude it can't miss! I know you will keep us posted! smile:)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Oxaliplatin treatment

Hi Kris,

I will keep my fingers crossed for your embolization on Thursday and I so hope it goes well! Please let us know how you get on, and I'm loving your positive, fighting spirit here!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Gemzar/Oxaliplatin treatment

Kris...all fingers are crossed for Thursday.  Can't wait to hear your report.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Gemzar/Oxaliplatin treatment

The embolization was mostly a success. There is still a slight "fluttery" leak but my onc thinks I should start using the pump with the FUDR. We are going to start Monday with a lesser amount of FUDR to see how my body handles the chemo and whether the leak is too much for me to handle. I'm a little nervous about it: I had really wanted the leaks to be gone. But I trust my onc knows what she's doing. So we move on to the next phase of fighting!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

Kris....so great to hear from you.  You are one major step ahead and now you need that little extra break for the possible, minor, leak to not interfere with the absorption of the chemotherapy.
My fingers are crossed and I am sending
all my best wishes your way
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Gemzar/Oxaliplatin treatment

Yea! KRIS!  I bet you are gld that is over and you are on your way again. wishing for a "leakless" Chemo! Best of luck and of course let us know!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Oxaliplatin treatment

Okay, people need to hear about this cocktail!!! I've only had 1 chemo treatment since my July 25th CT scan and the tumor has shrunk even more! It's now 4.0x2.4cm (July 25 it was 4.4x3.3cm). I can't believe it. My surgeon is out of the country so we can't discuss resection yet, but it's promising!
I think more people need to hear about this cocktail. It's not the most pleasant: burns with regular i.v. and even with the port a little sometimes, but OMG what results.
Today we are going to try the FUDR thru the pump tho. Even tho oxaliplatin is working so well, I drove into NYC by myself so really don't want the side effects of the gem/ox. I have too long a drive home. Hopefully FUDR works as well as the gem/ox from the INSIDE of the tumor! Keeping my fingers crossed and the prayers going.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

KRIS, right now I feel like your cheerleader! Go KRIS GO!!! This is getting more and more exciting, keep it going! You remind me of the children's book, The Little Engine That Could! I knew you could, I knew you could!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Gemzar/Oxaliplatin treatment

Ha kris...and there you go.  Fantastic news.  Did it work via pump today?
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Gemzar/Oxaliplatin treatment

Yes, Marion. We  filled the pump yesterday and I feel great today! No side effects. Hoping that keeps up. The best part is no neuropathy or nausea!! This is great so far. I just hope the results are as good as with the oxaliplatin. I almost didn't want to switch to the pump because the oxaliplatin is shrinking the tumor at such an amazing rate, but I figured it's in me, why not use it?

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Gemzar/Oxaliplatin treatment

What wonderful news, Kris.  Glad it is starting to look promising for a resection.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm