Be Honest!
here's my story again! 4th stage colon cancer, surgery last year, 5 fu for over a year, changed meds to xeloda, I just got my last CAT scan results, I have nodules in both my lungs that have changed in size, Cancer again. I will be starting Xeloda 2, twice a day for 1 week then 2 weeks off. I will be adding to this oxyaplatin and avadastan every 3 weeks. What can I expect with the oxyaplatin and avadastan (spelling?) My. dr. did mention neuropathy, but what else? I figured I would ask the pros! anything you have to say, be honest, I can take it!
Back on with my boxing gloves!love to all!
Karyn
Comments
-
Chemo
I'm on oxi and it has really brought down my immune system. My platelet counts are really low after 5 treatments where this week I was supposed to have chemo but had to delay it. I take vitamin B6 which seems to help with the neruopathy but I still get the cold sensation in throat and hands for several days after infusion. Don't mean to scare you but this is what I experienced. Good luck with your treatments. You can handle it. It's manageable.
Kim0 -
Thank-you Kim!Annabelle41415 said:Chemo
I'm on oxi and it has really brought down my immune system. My platelet counts are really low after 5 treatments where this week I was supposed to have chemo but had to delay it. I take vitamin B6 which seems to help with the neruopathy but I still get the cold sensation in throat and hands for several days after infusion. Don't mean to scare you but this is what I experienced. Good luck with your treatments. You can handle it. It's manageable.
Kim
Karyn
Thank-you Kim!
Karyn0 -
Howdy Karen
I cannot speak for the Adavastan, so I don't have experience there.
And the Oxaliplatin severly compromised my immune system's ability to produce blood platelets at the level that the body needs for chemo to be administred. It did this in less than 6 months and is a permanent condition for me. The neuropathy can be bad in your fingers and hands...ask your doctor about Magnesium Sulfate by IV - it was a Godsend for me and if it works on you, you will be able to drink cold drinks the "very night" of your treatment and it lessens other cold sensations and helps the neuropathy - you won't dread taking it as bad. Trust me, this is a good thing if it works and will cost you nothing to ask the onc about. It will improve your quality of life while on the treatment.
Lastly for the Xeloda, this is a very toxic drug. It will hit your fingers a little bit but it will punish your feet badly enough that it becomes difficult to stand, walk or keep your balance because the pain is so bad. It is 5fu in a pill and so it atttacks and drops your platelet counts as well, but only a couple of thousand per cycle, where over time Oxaliplatin can give you what they call ITP, which means that your body cannot on its own produce enough blood plaetelets.
There is a drug that boosts blood platelets, it is called Rituxan. The FDA also just approved another drug called NPLATE, about 8 months ago (I signed up for it the day it became approved) so that other patients could benefit from it - I was ending all of my treatments as we were working on that. But I wanted my oncologist to be able to dispense it for other cancer patients so they could be helped, so I signed up for him and got him authorized to dispense the drug. If chemo were in my furture again, I would have to take this drug to boost my platelet count to even think of doing chemo again - because the Oxy destroyed that for me...it helped me but hurt me too.
And back to the Xeloda, your dose is a small dose so it could be some time before toxicity builds up enough for you to notice...but when you do notice, what you will find is that your feet will begin to crack and split horrible, this causes the pain mentioned above.
What can you do? Go to the drugstore and pick up a tin of BAG BALM - get this specifically, it is an udder cream with excellent emollient properties. Slather it all over the top, sides and bottoms of your feet at least 3x a day - in the morning, around 5 or so, and then as you are going to bed...wear socks over them, this will hold the moisture in and allow your feet to suck up some of that moisture. If you get started on it early, you might head it off altogether. This is from my personal experience.
I was taking heavy doses of the stuff @ 500 mg each, 6-8 pills a day, sometimes 2 weeks on and 1 week off...and at the end we adjusted down to 1 week on and 1 week off, same strength.
Ok, this will get you off the launching pad and started...please inform me more about the Adavastan, I'm curious about that particular drug.
You take care and holler if you need
-Craig0 -
I must be a freak of nature
While I had neuropathy with the oxy, I have never had chemo held back due to any low blood counts. This goes back over 5 years of pretty steady chemo. I've also had very few colds during this time, maybe 2 or 3. My immune system seems to be able with withstand the chemo very well and I think the chemo kills the cold germs. Who knows, we are all different. I was on Avastin for the fist 5 months of treatment along with FOLFOX. I just remember having some mild to moderate neuropathy. I didn't lose hair or have skin issues. I did have the cold sensitivity. Search this site for "Avastin" and "oxyplatin" and see what pops up.
Good luck Karen
-phil0 -
another freakPhillieG said:I must be a freak of nature
While I had neuropathy with the oxy, I have never had chemo held back due to any low blood counts. This goes back over 5 years of pretty steady chemo. I've also had very few colds during this time, maybe 2 or 3. My immune system seems to be able with withstand the chemo very well and I think the chemo kills the cold germs. Who knows, we are all different. I was on Avastin for the fist 5 months of treatment along with FOLFOX. I just remember having some mild to moderate neuropathy. I didn't lose hair or have skin issues. I did have the cold sensitivity. Search this site for "Avastin" and "oxyplatin" and see what pops up.
Good luck Karen
-phil
Phil,
Interesting that you didn't get colds during your chemo- I haven't either. I used to get colds pretty often before and almost always had a bad bout with laryngitis and even pneumonia a couple of times in the couple of years prior to my diagnosis and starting chemo. My diagnosis was in Aug 2007 and I've only had two colds during all this time and no other illnesses. What an irony of life, isn't it? Our body has fought off all the sickness germs, but yet we have cancer!
Ah well- you gotta take the good with the bad
Lisa0 -
Freaky here, toolisa42 said:another freak
Phil,
Interesting that you didn't get colds during your chemo- I haven't either. I used to get colds pretty often before and almost always had a bad bout with laryngitis and even pneumonia a couple of times in the couple of years prior to my diagnosis and starting chemo. My diagnosis was in Aug 2007 and I've only had two colds during all this time and no other illnesses. What an irony of life, isn't it? Our body has fought off all the sickness germs, but yet we have cancer!
Ah well- you gotta take the good with the bad
Lisa
Neuropathy is not that bad, I'm still knitting every day after 11 treatments. I did have one instance of low WBC's after my 2nd Folfox tx, but doctor lowered the dosage slightly. I also had pink splotches, as did Lisa, that didn't change to anything else. Almost done here!
No colds, etc. In fact, I had my gall bladder out in before my 5th treatment and everything healed very quickly.0 -
I too, got what everyone is
I too, got what everyone is writting about plus muscle cramps. In the calves of your legs. Also I'd be using the mouse (computer) and my hand would stay in that same postition for a few seconds. And brushing my teeth, my lips would stay in that "smile" possition for a few seconds. That was weird.
Make sure the nurses don't make the drip go so fast. For me, when they slowed down the oxil drip, I didn't get the muscle cramps as bad (maybe that was all in my head! but it worked)
My thoughts are with you. Remember...keep your energy for moving forward. Looks like you are doing that!
Claudia
Stage 3 Colon
NED for 2 years0 -
You wanted honest
The oxialiplatin almost killed me. Taking 5fU, Oxi, leucovorin and Avastin brought down my blood counts and fried my taste buds. I went for three months without eating solid food. Nothing would go down with gagging me or if it did go down wouldn't stay down. I went for a month just drinking warm or hot liquids. After six weeks of not taking Oxi, I was able to start drinking cold drinks and I could add smoothies with Ensure and yogurt added. That was all I was able to get down. I lost 65 pounds.
I had the neuropathy so bad I would cry with the way my hands hurt. It never got that bad in my feet, but taking a shower then stepping out in the cold would just make my hands hurt. Doctors have always told me I have a high pain tolerance and after the first two days after my surgery I did not take pain pills, so I guess I do have the high pain tolerance, but my hands hurt so bad. I couldn't even peel a potato or onion.
After the eight treatments then five weeks to "rest" my doctor took me off oxi, he said there are just some people who can't take it and I felt like it was killing me. I am now on 1,200 units of 5FU, leucovorin and 400 units of Avastin. My treatments are once a week every other week and my last CT Scan showed the seven tumors still there, four growing, three shrinking. But I have to be honest and even the CT Scan taken while I was on Oxi, the same four grew then too and the same three shrunk.
Remember everybody is different. There were 70 people taking this treatment with my doctor and only two of us couldn't take it.
Good luck,
Debbie0 -
colonbdee said:You wanted honest
The oxialiplatin almost killed me. Taking 5fU, Oxi, leucovorin and Avastin brought down my blood counts and fried my taste buds. I went for three months without eating solid food. Nothing would go down with gagging me or if it did go down wouldn't stay down. I went for a month just drinking warm or hot liquids. After six weeks of not taking Oxi, I was able to start drinking cold drinks and I could add smoothies with Ensure and yogurt added. That was all I was able to get down. I lost 65 pounds.
I had the neuropathy so bad I would cry with the way my hands hurt. It never got that bad in my feet, but taking a shower then stepping out in the cold would just make my hands hurt. Doctors have always told me I have a high pain tolerance and after the first two days after my surgery I did not take pain pills, so I guess I do have the high pain tolerance, but my hands hurt so bad. I couldn't even peel a potato or onion.
After the eight treatments then five weeks to "rest" my doctor took me off oxi, he said there are just some people who can't take it and I felt like it was killing me. I am now on 1,200 units of 5FU, leucovorin and 400 units of Avastin. My treatments are once a week every other week and my last CT Scan showed the seven tumors still there, four growing, three shrinking. But I have to be honest and even the CT Scan taken while I was on Oxi, the same four grew then too and the same three shrunk.
Remember everybody is different. There were 70 people taking this treatment with my doctor and only two of us couldn't take it.
Good luck,
Debbie
Has anyone been given booster shots for the white blood counts on a regular basis? If so what are they called? Is this common for people who have low white counts to get? Thanks so much.0 -
Not on a regular basis - hadlaurak6022 said:colon
Has anyone been given booster shots for the white blood counts on a regular basis? If so what are they called? Is this common for people who have low white counts to get? Thanks so much.
Not on a regular basis - had to have white counts elevated one time. It was by shot and was called Neulasta...I've heard Neuprogen is the other one, I believe its called.
When your white counts are low and they need to do chemo, they can give you this to boost those counts for you to have treatments.
You're welcome.0 -
Neupogenlaurak6022 said:colon
Has anyone been given booster shots for the white blood counts on a regular basis? If so what are they called? Is this common for people who have low white counts to get? Thanks so much.
I did 6 months of IROX - irinotecan and oxaliplatin - last year. Towards the very end, I did neupogen shots - 3X per week every other week. When I had a recurrence in my liver earlier this year, I restarted irinotecan and did neupogen every other week. When the liver tumor could no longer be found, Xeloda was added and I now do the neupogen weekly. The neupogen has been effective for me and is only a minor annoyance to administer. I have basically been hammered with chemo for about a year and one-half and have never had to forego chemo due to blood counts. Plus I feel great.
The oxaliplatin caused sensitivity to cold, which lasted longer after a while. However, the cold sensitivity ended immediately when I stopped taking the oxaliplatin. I did get moderate neuropathy in my feet and hands after about 11 rounds. Over time - about 10 months now - my fingers have only the tiniest amount of neuropathy remaining and there is a small amount in my toes, which is also only a minor annoyance. Other than the neuropathy, the oxaliplatin did not bother me much. As the chemo decreased my tumor load, I felt stronger and stronger. Side effects were moderate overall and, compared to the benefit that I received, the side effects were nothing.0 -
HiSundanceh said:Howdy Karen
I cannot speak for the Adavastan, so I don't have experience there.
And the Oxaliplatin severly compromised my immune system's ability to produce blood platelets at the level that the body needs for chemo to be administred. It did this in less than 6 months and is a permanent condition for me. The neuropathy can be bad in your fingers and hands...ask your doctor about Magnesium Sulfate by IV - it was a Godsend for me and if it works on you, you will be able to drink cold drinks the "very night" of your treatment and it lessens other cold sensations and helps the neuropathy - you won't dread taking it as bad. Trust me, this is a good thing if it works and will cost you nothing to ask the onc about. It will improve your quality of life while on the treatment.
Lastly for the Xeloda, this is a very toxic drug. It will hit your fingers a little bit but it will punish your feet badly enough that it becomes difficult to stand, walk or keep your balance because the pain is so bad. It is 5fu in a pill and so it atttacks and drops your platelet counts as well, but only a couple of thousand per cycle, where over time Oxaliplatin can give you what they call ITP, which means that your body cannot on its own produce enough blood plaetelets.
There is a drug that boosts blood platelets, it is called Rituxan. The FDA also just approved another drug called NPLATE, about 8 months ago (I signed up for it the day it became approved) so that other patients could benefit from it - I was ending all of my treatments as we were working on that. But I wanted my oncologist to be able to dispense it for other cancer patients so they could be helped, so I signed up for him and got him authorized to dispense the drug. If chemo were in my furture again, I would have to take this drug to boost my platelet count to even think of doing chemo again - because the Oxy destroyed that for me...it helped me but hurt me too.
And back to the Xeloda, your dose is a small dose so it could be some time before toxicity builds up enough for you to notice...but when you do notice, what you will find is that your feet will begin to crack and split horrible, this causes the pain mentioned above.
What can you do? Go to the drugstore and pick up a tin of BAG BALM - get this specifically, it is an udder cream with excellent emollient properties. Slather it all over the top, sides and bottoms of your feet at least 3x a day - in the morning, around 5 or so, and then as you are going to bed...wear socks over them, this will hold the moisture in and allow your feet to suck up some of that moisture. If you get started on it early, you might head it off altogether. This is from my personal experience.
I was taking heavy doses of the stuff @ 500 mg each, 6-8 pills a day, sometimes 2 weeks on and 1 week off...and at the end we adjusted down to 1 week on and 1 week off, same strength.
Ok, this will get you off the launching pad and started...please inform me more about the Adavastan, I'm curious about that particular drug.
You take care and holler if you need
-Craig
Thank-you Craig!
I was on the xeloda 5 pills a day for 2 weeks then 1 week off, so I am aware of the hand and feet reaction. I have been putting vaseline, but I will switch to the bag balm! Thank-You sooo much for your info.
I will keep you updated on the adavastan.
Karyn0 -
Thank-YouPhillieG said:I must be a freak of nature
While I had neuropathy with the oxy, I have never had chemo held back due to any low blood counts. This goes back over 5 years of pretty steady chemo. I've also had very few colds during this time, maybe 2 or 3. My immune system seems to be able with withstand the chemo very well and I think the chemo kills the cold germs. Who knows, we are all different. I was on Avastin for the fist 5 months of treatment along with FOLFOX. I just remember having some mild to moderate neuropathy. I didn't lose hair or have skin issues. I did have the cold sensitivity. Search this site for "Avastin" and "oxyplatin" and see what pops up.
Good luck Karen
-phil
Thank-You Phil for your input!
Karyn0 -
Thank-Youclaud1951 said:I too, got what everyone is
I too, got what everyone is writting about plus muscle cramps. In the calves of your legs. Also I'd be using the mouse (computer) and my hand would stay in that same postition for a few seconds. And brushing my teeth, my lips would stay in that "smile" possition for a few seconds. That was weird.
Make sure the nurses don't make the drip go so fast. For me, when they slowed down the oxil drip, I didn't get the muscle cramps as bad (maybe that was all in my head! but it worked)
My thoughts are with you. Remember...keep your energy for moving forward. Looks like you are doing that!
Claudia
Stage 3 Colon
NED for 2 years
Thank-You Claudia and congratulations on being NED for 2 years! Keep Dancing!
Karyn0 -
Thank-Youbdee said:You wanted honest
The oxialiplatin almost killed me. Taking 5fU, Oxi, leucovorin and Avastin brought down my blood counts and fried my taste buds. I went for three months without eating solid food. Nothing would go down with gagging me or if it did go down wouldn't stay down. I went for a month just drinking warm or hot liquids. After six weeks of not taking Oxi, I was able to start drinking cold drinks and I could add smoothies with Ensure and yogurt added. That was all I was able to get down. I lost 65 pounds.
I had the neuropathy so bad I would cry with the way my hands hurt. It never got that bad in my feet, but taking a shower then stepping out in the cold would just make my hands hurt. Doctors have always told me I have a high pain tolerance and after the first two days after my surgery I did not take pain pills, so I guess I do have the high pain tolerance, but my hands hurt so bad. I couldn't even peel a potato or onion.
After the eight treatments then five weeks to "rest" my doctor took me off oxi, he said there are just some people who can't take it and I felt like it was killing me. I am now on 1,200 units of 5FU, leucovorin and 400 units of Avastin. My treatments are once a week every other week and my last CT Scan showed the seven tumors still there, four growing, three shrinking. But I have to be honest and even the CT Scan taken while I was on Oxi, the same four grew then too and the same three shrunk.
Remember everybody is different. There were 70 people taking this treatment with my doctor and only two of us couldn't take it.
Good luck,
Debbie
Thanks Debbie for your honesty!
Good luck to you!
Karyn0 -
Hilaurak6022 said:colon
Has anyone been given booster shots for the white blood counts on a regular basis? If so what are they called? Is this common for people who have low white counts to get? Thanks so much.
I also had to have neulasta shots everytime I had my 5 fu, it did help me and I did not have to have my chemo canceled!
Good luck!
Karyn0 -
Thank-YouADKer said:Neupogen
I did 6 months of IROX - irinotecan and oxaliplatin - last year. Towards the very end, I did neupogen shots - 3X per week every other week. When I had a recurrence in my liver earlier this year, I restarted irinotecan and did neupogen every other week. When the liver tumor could no longer be found, Xeloda was added and I now do the neupogen weekly. The neupogen has been effective for me and is only a minor annoyance to administer. I have basically been hammered with chemo for about a year and one-half and have never had to forego chemo due to blood counts. Plus I feel great.
The oxaliplatin caused sensitivity to cold, which lasted longer after a while. However, the cold sensitivity ended immediately when I stopped taking the oxaliplatin. I did get moderate neuropathy in my feet and hands after about 11 rounds. Over time - about 10 months now - my fingers have only the tiniest amount of neuropathy remaining and there is a small amount in my toes, which is also only a minor annoyance. Other than the neuropathy, the oxaliplatin did not bother me much. As the chemo decreased my tumor load, I felt stronger and stronger. Side effects were moderate overall and, compared to the benefit that I received, the side effects were nothing.
Thanks for your input, overall it doesn't sound so bad! Nothing I can't handle, hopefully.
I will keep everyone updated!
Karyn0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards