Had to get off of the Nexavar.

veronica57

I started Nexavar on the 28th of July. At first, I was fine and I wasn't experiencing any side effects. So I thought. But I noticed I was breaking out with a rash. I started taking Benadril, but it made me worst. My feet started hurting so bad, I could hardly walk. Then my shoulder began hurting. Finally, my ear lobes started swelling. The doctor told me to stop taking them and come see him Tuesday. I've been off of them for about two or three days now, but the rash is not going away and my feet are slowly getting better. Is there something to counteract this drug?

alapah

I don't have an answer for
I don't have an answer for you but I wanted to let you know that there is a message board on Yahoo Groups called Adv Thyca sponsored by thyca.org which has members who have been on or are currently using chemo drugs such as Nexavar. If you don't get any responses on this site, you might want to try that one. I've got lung mets and am just starting to look into these things myself. Best to you.

veronica57

alapah said:

I don't have an answer for
I don't have an answer for you but I wanted to let you know that there is a message board on Yahoo Groups called Adv Thyca sponsored by thyca.org which has members who have been on or are currently using chemo drugs such as Nexavar. If you don't get any responses on this site, you might want to try that one. I've got lung mets and am just starting to look into these things myself. Best to you.

Thank you alapah
Thank you alapah. I will check that out. Best to you too. Please let me know what your doctors do for your lung mets.

alapah

veronica57 said:

Thank you alapah
Thank you alapah. I will check that out. Best to you too. Please let me know what your doctors do for your lung mets.

I am just finishing up
I am just finishing up consults at the Mayo Clinic in MN (I had external beam radiation here last fall). So far, the endocrinologist, radiation oncologist and medical oncologist have recommended against taking any immediate actions to treat, rather to monitor every six months with PET and CT scans in my case. Although I have several lung nodules they say they are small and not so numerous as to be overly concerned at this point - at least in terms of recommending further treatment (surgery, radiation or chemo). The chemo treatment route sounds like it should be used strategically so they want to hold that card. I am planning on getting referrals for consults with Dr. Steve Sherman at MD Anderson and Dr. Marcia Brose at U Penn. I always like to get a number of opinions to make decisions re treatment, as do most of us I suppose.

veronica57

alapah said:

I am just finishing up
I am just finishing up consults at the Mayo Clinic in MN (I had external beam radiation here last fall). So far, the endocrinologist, radiation oncologist and medical oncologist have recommended against taking any immediate actions to treat, rather to monitor every six months with PET and CT scans in my case. Although I have several lung nodules they say they are small and not so numerous as to be overly concerned at this point - at least in terms of recommending further treatment (surgery, radiation or chemo). The chemo treatment route sounds like it should be used strategically so they want to hold that card. I am planning on getting referrals for consults with Dr. Steve Sherman at MD Anderson and Dr. Marcia Brose at U Penn. I always like to get a number of opinions to make decisions re treatment, as do most of us I suppose.

alapah
My doctors didn't want to start treament for my nodules either. I kept trying to get other opinions also. But it seemed every where I went, they were all members of the same medical group. I had trouble breathing and I went to the ER. The doctors there told me that comparerd to the last time I was there, new nodules were growing and the existing ones were getting larger. That's when I insisted on getting some type of treatment. I felt like I was being put off because of my insurance. My endo doesn't even follow me anymore. They haven't given me an appointment to come back since I supposedly had rai in april or may. I recently had the lung biopsy that proved that this was still thyroid cancer growing in my lungs.

I noticed you said you had external beam radiation. I saw a radiation oncologist here in VA., and he told me that I could not have external beam radiation because it would burn the good tissue in my lungs. My regular oncologist says, that regular chemo won't do me any good. That's why he put me on nexevar. I'm so afraid that the cancer will spread to other organs before they get it under control; if they ever.

alapah

veronica57 said:

alapah
My doctors didn't want to start treament for my nodules either. I kept trying to get other opinions also. But it seemed every where I went, they were all members of the same medical group. I had trouble breathing and I went to the ER. The doctors there told me that comparerd to the last time I was there, new nodules were growing and the existing ones were getting larger. That's when I insisted on getting some type of treatment. I felt like I was being put off because of my insurance. My endo doesn't even follow me anymore. They haven't given me an appointment to come back since I supposedly had rai in april or may. I recently had the lung biopsy that proved that this was still thyroid cancer growing in my lungs.

I noticed you said you had external beam radiation. I saw a radiation oncologist here in VA., and he told me that I could not have external beam radiation because it would burn the good tissue in my lungs. My regular oncologist says, that regular chemo won't do me any good. That's why he put me on nexevar. I'm so afraid that the cancer will spread to other organs before they get it under control; if they ever.

EBR
The EBR was to my neck since the tumor had adhered to my trachea. It is true that EBR is very hard on the lungs. My radiation oncologist didn't completely dismiss it as an option down the road however. The chemo drugs currently in use for lung mets of thyroid cancer were actually not developed for thyroid cancer from what I understand. It's still sort of experimental. Mayo and some other places are doing some interesting trials on these and other drugs. I totally understand your fears - I'm definitely with you there. I try to be positive as much as possible but I let myself melt down now and then.

I hear Johns Hopkins has a good team for thyroid cancer - have you been there?

alapah

veronica57 said:

alapah
My doctors didn't want to start treament for my nodules either. I kept trying to get other opinions also. But it seemed every where I went, they were all members of the same medical group. I had trouble breathing and I went to the ER. The doctors there told me that comparerd to the last time I was there, new nodules were growing and the existing ones were getting larger. That's when I insisted on getting some type of treatment. I felt like I was being put off because of my insurance. My endo doesn't even follow me anymore. They haven't given me an appointment to come back since I supposedly had rai in april or may. I recently had the lung biopsy that proved that this was still thyroid cancer growing in my lungs.

I noticed you said you had external beam radiation. I saw a radiation oncologist here in VA., and he told me that I could not have external beam radiation because it would burn the good tissue in my lungs. My regular oncologist says, that regular chemo won't do me any good. That's why he put me on nexevar. I'm so afraid that the cancer will spread to other organs before they get it under control; if they ever.

EBR
The EBR was to my neck since the tumor had adhered to my trachea. It is true that EBR is very hard on the lungs. My radiation oncologist didn't completely dismiss it as an option down the road however. The chemo drugs currently in use for lung mets of thyroid cancer were actually not developed for thyroid cancer from what I understand. It's still sort of experimental. Mayo and some other places are doing some interesting trials on these and other drugs. I totally understand your fears - I'm definitely with you there. I try to be positive as much as possible but I let myself melt down now and then.

I hear Johns Hopkins has a good team for thyroid cancer - have you been there?

miladyx

alapah said:

EBR
The EBR was to my neck since the tumor had adhered to my trachea. It is true that EBR is very hard on the lungs. My radiation oncologist didn't completely dismiss it as an option down the road however. The chemo drugs currently in use for lung mets of thyroid cancer were actually not developed for thyroid cancer from what I understand. It's still sort of experimental. Mayo and some other places are doing some interesting trials on these and other drugs. I totally understand your fears - I'm definitely with you there. I try to be positive as much as possible but I let myself melt down now and then.

I hear Johns Hopkins has a good team for thyroid cancer - have you been there?

alapah -
I am glad ur drs donot think any drastic action is necessary at this point. Did you get your blood work results at mayo? Was there a drastic change?

Thanks for helping.

alapah

miladyx said:

alapah -
I am glad ur drs donot think any drastic action is necessary at this point. Did you get your blood work results at mayo? Was there a drastic change?

Thanks for helping.

no drastic changes in bloodwork...
but I have TgAB antibodies and the docs at home and at Mayo have now concluded that, for me, Tg is a useless marker.

veronica57

alapah said:

EBR
The EBR was to my neck since the tumor had adhered to my trachea. It is true that EBR is very hard on the lungs. My radiation oncologist didn't completely dismiss it as an option down the road however. The chemo drugs currently in use for lung mets of thyroid cancer were actually not developed for thyroid cancer from what I understand. It's still sort of experimental. Mayo and some other places are doing some interesting trials on these and other drugs. I totally understand your fears - I'm definitely with you there. I try to be positive as much as possible but I let myself melt down now and then.

I hear Johns Hopkins has a good team for thyroid cancer - have you been there?

Hi alapah
Thanks. Your words are positive and very informative. I enjoy talking to you. Unfortunately, I don't have the funds to travel outside of the city. I go to the Cancer Institute of Va., and I've been to several other local Cancer Institutes here including (Massey). But I will try to pull up John Hopkins online.

I went to the doctor today. The nurse practitioner said my labs were fine. He called me this evening to tell me that the doctor wants me back on the nexevar. But they lowered the dose. I was taking 2 (200mg.)tablets a day. They reduced the dose to one a day. Stay positive. Veronica

tgreene1008

alapah said:

I am just finishing up
I am just finishing up consults at the Mayo Clinic in MN (I had external beam radiation here last fall). So far, the endocrinologist, radiation oncologist and medical oncologist have recommended against taking any immediate actions to treat, rather to monitor every six months with PET and CT scans in my case. Although I have several lung nodules they say they are small and not so numerous as to be overly concerned at this point - at least in terms of recommending further treatment (surgery, radiation or chemo). The chemo treatment route sounds like it should be used strategically so they want to hold that card. I am planning on getting referrals for consults with Dr. Steve Sherman at MD Anderson and Dr. Marcia Brose at U Penn. I always like to get a number of opinions to make decisions re treatment, as do most of us I suppose.

I was told not to bother considering chemo ...
alapah -

I am in the same spot as you. Having CT scans every three months with numerous lung nodules and my cancer appears to now be unresponsive to RAI. My docs have pretty much said that only trial drugs have much to offer and that Chemo has very poor record of doing any good on thyroid cancer. Did you hear differently?

alapah

tgreene1008 said:

I was told not to bother considering chemo ...
alapah -

I am in the same spot as you. Having CT scans every three months with numerous lung nodules and my cancer appears to now be unresponsive to RAI. My docs have pretty much said that only trial drugs have much to offer and that Chemo has very poor record of doing any good on thyroid cancer. Did you hear differently?

chemo drugs advice
I was able to get a consult with a top medical oncologist at the Mayo and he said that the two or three drugs they've been working with (i forget all the names -gotta dig up my notebook) are not overwhelmingly effective in most patients and that the side effects really impact quality of life. The ones they are using also don't cure the cancer, they will just hold it at bay or shrink tumors if you are fortunate to respond. They have one or two new trials coming up at Mayo. I also have had a melanoma so it was suggested I might want to see if there is a tissue block of my original tumor available to test for the BRAF mutation. There are some drugs that seem to target BRAF mutation better than others. I must admit I have not yet done a great deal of research on that yet. I have asked my endo for three referrals to other docs in country, including MD Anderson, just so I can get some more info and opinions. There are quite a few people on the advanced thyroid cancer yahoo group that are dealing with lung mets and I've found that forum to also be very helpful.
BTW, I was diagnosed with an aggressive form of PTC at 43. I'm now 44.