grannysmith

Buckwirth 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.

PhillieG 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

Buckwirth 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

Buckwirth 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

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

Grannysmith 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.