grannysmith
Comments
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treatment
i am taking erbituk for colon cancer. ido not know if it is doing any good yet. will be five more weeks before i have a pet scan. i have trying to find out how people on this manage the sunlight. ijust stay in, and i hate that.0 -
I wear a hatGrannysmith said:treatment
i am taking erbituk for colon cancer. ido not know if it is doing any good yet. will be five more weeks before i have a pet scan. i have trying to find out how people on this manage the sunlight. ijust stay in, and i hate that.
and use 100 sunblock.
Kroger has it under their own brand, and it is the non-greasy formula, so once it is on you can't really feel it.
I don't spend a lot of time outdoors, but I do still put the top down on the convertible (wearing the hat) and try to get out of the house at least once a day.
For the first two weeks the rash was very painful, I almost gave up wearing my glasses it hurt so much. Since then (I just had my fourth treatment) it has calmed down. I did go to the dermatologist and got an antibiotic prescription and a cream that is supposed to help.
There is another way to check if the treatment is working, though it is not as accurate as the PET/CT: CEA. You should be able to get that checked every two weeks or once a month (depending on insurance). If it is going down, or staying at a steady low level, the treatment is probably having some beneficial effects. It should be noted that it is not always bad news if it goes up a bit, as dying cells may release additional markers into the blood stream.
How bad has your rash been? There is some evidence that the presence of a rash is a good sign that Erbitux is working, but I am not sure how much of that was before they knew to test for the wild kras gene.
On an interesting note, were you aware that this is the drug that sent Martha Stewart to jail? It failed FDA approval on the first go round, and she sold the stock after getting inside information from the CEO. She was a bit premature, as now it is very successful and is being used for multiple cancers. Had she waited she would have made money, and never had to settle for three hots and a cot.0 -
rashBuckwirth said:I wear a hat
and use 100 sunblock.
Kroger has it under their own brand, and it is the non-greasy formula, so once it is on you can't really feel it.
I don't spend a lot of time outdoors, but I do still put the top down on the convertible (wearing the hat) and try to get out of the house at least once a day.
For the first two weeks the rash was very painful, I almost gave up wearing my glasses it hurt so much. Since then (I just had my fourth treatment) it has calmed down. I did go to the dermatologist and got an antibiotic prescription and a cream that is supposed to help.
There is another way to check if the treatment is working, though it is not as accurate as the PET/CT: CEA. You should be able to get that checked every two weeks or once a month (depending on insurance). If it is going down, or staying at a steady low level, the treatment is probably having some beneficial effects. It should be noted that it is not always bad news if it goes up a bit, as dying cells may release additional markers into the blood stream.
How bad has your rash been? There is some evidence that the presence of a rash is a good sign that Erbitux is working, but I am not sure how much of that was before they knew to test for the wild kras gene.
On an interesting note, were you aware that this is the drug that sent Martha Stewart to jail? It failed FDA approval on the first go round, and she sold the stock after getting inside information from the CEO. She was a bit premature, as now it is very successful and is being used for multiple cancers. Had she waited she would have made money, and never had to settle for three hots and a cot.
i don't have much of a rash. my face is just really dry and itchy. i hope that doesn't mean it isn't working. he put me on a antibotic in the begining, which i think has kept it down. no i didn't know that was the drug martha went to jail over. ihave also had four treatments. ihave one each week.0 -
ErbituxGrannysmith said:rash
i don't have much of a rash. my face is just really dry and itchy. i hope that doesn't mean it isn't working. he put me on a antibotic in the begining, which i think has kept it down. no i didn't know that was the drug martha went to jail over. ihave also had four treatments. ihave one each week.
The rash, or lack of a rash, really has little to do with the effectiveness of the drug. People have been on it with little or no rash and it works as well. I've been on it since it was approved (back in July '05) and not hardly get any rash at all. I do have some dry skin issues.
I had started out going every week for it, then I went to a double dose every two weeks. Now I go for a double dose every three weeks and it's still effective after 6 years. I take minocyclin also which does help keep the rash down.
-phil0 -
rashPhillieG said:Erbitux
The rash, or lack of a rash, really has little to do with the effectiveness of the drug. People have been on it with little or no rash and it works as well. I've been on it since it was approved (back in July '05) and not hardly get any rash at all. I do have some dry skin issues.
I had started out going every week for it, then I went to a double dose every two weeks. Now I go for a double dose every three weeks and it's still effective after 6 years. I take minocyclin also which does help keep the rash down.
-phil
i take a antibotic also,but after yesterday treatment my arms are really broke out and stingy. do you feel pretty good on this. wondering, do you still work. i was loosing my hair with first chemo i was on, but now it just won't grow very fast. thanks for the information. Hate having to be careful in sunlight. mostly stay in.0 -
treatment
they are going pretty good. not to many problems.my arms are aii red and stingy after yesterday treatment. that is really annoying, and i don't sleep very well. i have to go once a week. wish he could spread them out, sence this is a lifetime thing. but anything to get to be with my family longer.i also have aproblem knowing the right foods to eat.0 -
TreatmentGrannysmith said:treatment
they are going pretty good. not to many problems.my arms are aii red and stingy after yesterday treatment. that is really annoying, and i don't sleep very well. i have to go once a week. wish he could spread them out, sence this is a lifetime thing. but anything to get to be with my family longer.i also have aproblem knowing the right foods to eat.
Once they have it under control, you can discuss changing the treatment schedule (like you, I am on weekly, but hope for the day I can go to Phil's schedule).
Not sure about Phil, but I have continued to work since my dx, though I am beginning to taper off, first to part time, then, later this summer, to long term disability.
I note from both your user profile that you might be of Social Security age, however, if you are not, you are eligible for Social Security Disability (and both short term and long term disability if your employer offers it). There is a compassion clause in the SSDI laws that allows Stage IV patients to bypass all of the waiting periods, so you would get fast tracked if you choose to take it.
From what others have reported, it only takes a couple of weeks to get approved, and the folks at SSDI are apparently very helpful in walking you through the process.
On eating, start with your Oncologist, though you will get lots of (sometimes conflicting) information from others on this site (diet is an ongoing debate here, as it should be). He will probably recommend a diet that is high in protein and iron in order to keep the blood counts up. There are some who juice, others who eat what they like, just trying to keep weight up. Personally, I just favor a well balanced diet supplemented with a protein powder twice a day (morning blended in my coffee, and a shake in the afternoon/evening).
Hope that helps,
Blake0 -
HairGrannysmith said:rash
i take a antibotic also,but after yesterday treatment my arms are really broke out and stingy. do you feel pretty good on this. wondering, do you still work. i was loosing my hair with first chemo i was on, but now it just won't grow very fast. thanks for the information. Hate having to be careful in sunlight. mostly stay in.
Are you on Irinotecan with the Erbitux? If so, hair loss is a major side effect of Irinotecan, so the fact that it has not grown back to your satisfaction could have something to do with the current treatment.0 -
treatmentBuckwirth said:Treatment
Once they have it under control, you can discuss changing the treatment schedule (like you, I am on weekly, but hope for the day I can go to Phil's schedule).
Not sure about Phil, but I have continued to work since my dx, though I am beginning to taper off, first to part time, then, later this summer, to long term disability.
I note from both your user profile that you might be of Social Security age, however, if you are not, you are eligible for Social Security Disability (and both short term and long term disability if your employer offers it). There is a compassion clause in the SSDI laws that allows Stage IV patients to bypass all of the waiting periods, so you would get fast tracked if you choose to take it.
From what others have reported, it only takes a couple of weeks to get approved, and the folks at SSDI are apparently very helpful in walking you through the process.
On eating, start with your Oncologist, though you will get lots of (sometimes conflicting) information from others on this site (diet is an ongoing debate here, as it should be). He will probably recommend a diet that is high in protein and iron in order to keep the blood counts up. There are some who juice, others who eat what they like, just trying to keep weight up. Personally, I just favor a well balanced diet supplemented with a protein powder twice a day (morning blended in my coffee, and a shake in the afternoon/evening).
Hope that helps,
Blake
i will be 67 july 14, so i am already drawing my social security.my original cancer was stage 3, but when they did my surgery, it caused it to spread into several lymph nodes. i am allergic to all other chemos. have so far been able to tolerate erbitux. hope it is working. will have pet scan after three more treatments. it is so expensive. i am having a hard time finding money for my co-pay. enjoy your 4th.
donna0 -
Donna,Grannysmith said:treatment
i will be 67 july 14, so i am already drawing my social security.my original cancer was stage 3, but when they did my surgery, it caused it to spread into several lymph nodes. i am allergic to all other chemos. have so far been able to tolerate erbitux. hope it is working. will have pet scan after three more treatments. it is so expensive. i am having a hard time finding money for my co-pay. enjoy your 4th.
donna
did you explore any of the options on this site:
ERBITUX® (cetuximab) Reimbursement and Support0 -
compassionate clauseBuckwirth said:Treatment
Once they have it under control, you can discuss changing the treatment schedule (like you, I am on weekly, but hope for the day I can go to Phil's schedule).
Not sure about Phil, but I have continued to work since my dx, though I am beginning to taper off, first to part time, then, later this summer, to long term disability.
I note from both your user profile that you might be of Social Security age, however, if you are not, you are eligible for Social Security Disability (and both short term and long term disability if your employer offers it). There is a compassion clause in the SSDI laws that allows Stage IV patients to bypass all of the waiting periods, so you would get fast tracked if you choose to take it.
From what others have reported, it only takes a couple of weeks to get approved, and the folks at SSDI are apparently very helpful in walking you through the process.
On eating, start with your Oncologist, though you will get lots of (sometimes conflicting) information from others on this site (diet is an ongoing debate here, as it should be). He will probably recommend a diet that is high in protein and iron in order to keep the blood counts up. There are some who juice, others who eat what they like, just trying to keep weight up. Personally, I just favor a well balanced diet supplemented with a protein powder twice a day (morning blended in my coffee, and a shake in the afternoon/evening).
Hope that helps,
Blake
Hi Blake,
Can you point me to some info on this? I applied for SSD and was approved very quickly, but I am still required to await five months passing before benefits begin
Janine0 -
This should helpSisterSledge said:compassionate clause
Hi Blake,
Can you point me to some info on this? I applied for SSD and was approved very quickly, but I am still required to await five months passing before benefits begin
Janine
Lots of linked resources in this article:
SSA's Compassionate Allowance Cuts SSDI Approval Time From Months to Days0 -
MomGrannysmith said:treatment
i will be 67 july 14, so i am already drawing my social security.my original cancer was stage 3, but when they did my surgery, it caused it to spread into several lymph nodes. i am allergic to all other chemos. have so far been able to tolerate erbitux. hope it is working. will have pet scan after three more treatments. it is so expensive. i am having a hard time finding money for my co-pay. enjoy your 4th.
donna
I told you not to worry about your treatments. You have six kids that can help. Love you very much. Your daughter.
FM0 -
compassionate clauseBuckwirth said:This should help
Lots of linked resources in this article:
SSA's Compassionate Allowance Cuts SSDI Approval Time From Months to Days
It looks like the compassionate clause only extends to getting your SSD application approved...there doesn't seem to be any compassion with having a five month waiting period before benefits are begun 0 -
Time should startSisterSledge said:compassionate clause
It looks like the compassionate clause only extends to getting your SSD application approved...there doesn't seem to be any compassion with having a five month waiting period before benefits are begun
With date of dx, which has been almost 5 months. Contact an Atty if you need to, it won't cost you anything.0 -
almost...Buckwirth said:Time should start
With date of dx, which has been almost 5 months. Contact an Atty if you need to, it won't cost you anything.
My dx was 2/2/11...they won't count Feb since it wasn't a complete month, so 1st payment will be 9/3/11 for the month of August...a long time to wait
*added*
Tis especially a long time to wait when my family of four is unemployed and I have stageIV...lotsa extra expenses from cancer with gas for chemo and appointments, copays, supplements, etc. Hard times.
My family is helping a lot...Mom paid off my car, Sis gave me a cell phone and cousins are paying the gas for our visit to them next week. We'll manage everything somehow, but that five month waiting period for SSD is a pain!0 -
sunshineGrannysmith said:treatment
i am taking erbituk for colon cancer. ido not know if it is doing any good yet. will be five more weeks before i have a pet scan. i have trying to find out how people on this manage the sunlight. ijust stay in, and i hate that.
Hi Granny
I was warned that chemo might make me prone to sunburn so I've been avoiding it too by staying in more...but I do love the sun and must work in my garden at minimum. So...gloves, white long-sleeve shirt hat and capri pants are my attire. I don't use sunscreen.
Lately I've been testing the premise of whether I'm more burnable, and so far I've not even gotten pink from short times of sunshine exposure. I'm going to keep extending my time in the sun to know where my actual limits are. I'm darker complected and don't usually burn without extreme exposure, so we'll see how it goes.
Hope you are able to go out more,
Janine0 -
sunSisterSledge said:sunshine
Hi Granny
I was warned that chemo might make me prone to sunburn so I've been avoiding it too by staying in more...but I do love the sun and must work in my garden at minimum. So...gloves, white long-sleeve shirt hat and capri pants are my attire. I don't use sunscreen.
Lately I've been testing the premise of whether I'm more burnable, and so far I've not even gotten pink from short times of sunshine exposure. I'm going to keep extending my time in the sun to know where my actual limits are. I'm darker complected and don't usually burn without extreme exposure, so we'll see how it goes.
Hope you are able to go out more,
Janine
hi,
i love the outdoors, and working in the yard, but i have had to let it go. they told me to not be in the sun unless it was necessary. i am suppose to wear a wide brimmed hat, long sleeves, long paints, and sun block.living in the south, it is really to hot to be out. guess i will make it.
grannysmith0 -
We are supposed to be carefulGrannysmith said:sun
hi,
i love the outdoors, and working in the yard, but i have had to let it go. they told me to not be in the sun unless it was necessary. i am suppose to wear a wide brimmed hat, long sleeves, long paints, and sun block.living in the south, it is really to hot to be out. guess i will make it.
grannysmith
but test it out a little (can't hurt).
I still drive with the top down, and my rash has subsided considerably since the first couple of treatments.
The little joys still matter, take them when you can.0
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