› Forums › General Melanoma Community › Circulating Tumor Cell Test
- This topic has 27 replies, 6 voices, and was last updated 10 years, 6 months ago by
Emcjones1.
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- October 28, 2014 at 3:12 am
I just did my second CTC which measures how much melanoma is in the blood stream. The first one i did in June came back at .75 which according to the doctor meant that I had a very small amount of melanoma in blood stream and a very low risk of distant spread.
The second one however has increased allmost 6 fold to 4.25 whcih now puts me at grave risk of distant spread or recurrence. Now I dont know what to do and I am really gutted.
I am currently stage 3 but it seems like things are getting worse quickly although i still feel really good. Apparently the test which is the Maintrac CTC test has a very good predictive value and is usually six months ahead of what happens.
I dont know what therapies I should try or what i can do now. They only thing they are offering is chemo or interferon which I wont do.
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- October 28, 2014 at 3:19 am
Without measurable disease somewhere, there really isn't much you can do. You're still considered stage III. That test sounds interesting, but it's hardly a universally accepted standard at this point. Maybe someday. But until you have some type of actual tumor or you try to find a clinical trial for stage III NED, you don't have many options.
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- October 28, 2014 at 8:57 am
That is the problem. Now I really feel like a walking time bomb even more so than before.
I feel like doing something which I have been doing via diet and supplements etc but it seems the disease is progressing at a rapid rate according to the CTC test.
There are quite a lot of research papers out there on this type of test and they are using primarily to montior how therapies are working and if the CTC score goes especially if the rise is significant then it is a very strong indicator for relapse and recurrence.
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- October 29, 2014 at 2:01 am
Hello. I am sorry to hear of your struggles. Certainly the CTC increase is disconcerting, and suggestive of an impending issue. One note of caution with these tests, they involve a two step process, and if the first step, the fcioll separation is off the test is off. If I were in your situation I would ask for a repeat test with a molecular biomarkers follow up to determine if CTC express predominantly melanoma markers or if they express markers associated with transition to another subtype. The molecular studies can help identify possible location of a microscopic tumor, and/or identify effective treatments. I am not one to sit and wait.
CTC tests are routinely run for great Cancer patients in the USA, but is not used as frequently with other solid rumors.
Best wishes.
Genie
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- October 29, 2014 at 2:01 am
Hello. I am sorry to hear of your struggles. Certainly the CTC increase is disconcerting, and suggestive of an impending issue. One note of caution with these tests, they involve a two step process, and if the first step, the fcioll separation is off the test is off. If I were in your situation I would ask for a repeat test with a molecular biomarkers follow up to determine if CTC express predominantly melanoma markers or if they express markers associated with transition to another subtype. The molecular studies can help identify possible location of a microscopic tumor, and/or identify effective treatments. I am not one to sit and wait.
CTC tests are routinely run for great Cancer patients in the USA, but is not used as frequently with other solid rumors.
Best wishes.
Genie
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- October 29, 2014 at 2:01 am
Hello. I am sorry to hear of your struggles. Certainly the CTC increase is disconcerting, and suggestive of an impending issue. One note of caution with these tests, they involve a two step process, and if the first step, the fcioll separation is off the test is off. If I were in your situation I would ask for a repeat test with a molecular biomarkers follow up to determine if CTC express predominantly melanoma markers or if they express markers associated with transition to another subtype. The molecular studies can help identify possible location of a microscopic tumor, and/or identify effective treatments. I am not one to sit and wait.
CTC tests are routinely run for great Cancer patients in the USA, but is not used as frequently with other solid rumors.
Best wishes.
Genie
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- October 28, 2014 at 8:57 am
That is the problem. Now I really feel like a walking time bomb even more so than before.
I feel like doing something which I have been doing via diet and supplements etc but it seems the disease is progressing at a rapid rate according to the CTC test.
There are quite a lot of research papers out there on this type of test and they are using primarily to montior how therapies are working and if the CTC score goes especially if the rise is significant then it is a very strong indicator for relapse and recurrence.
-
- October 28, 2014 at 8:57 am
That is the problem. Now I really feel like a walking time bomb even more so than before.
I feel like doing something which I have been doing via diet and supplements etc but it seems the disease is progressing at a rapid rate according to the CTC test.
There are quite a lot of research papers out there on this type of test and they are using primarily to montior how therapies are working and if the CTC score goes especially if the rise is significant then it is a very strong indicator for relapse and recurrence.
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- October 28, 2014 at 3:19 am
Without measurable disease somewhere, there really isn't much you can do. You're still considered stage III. That test sounds interesting, but it's hardly a universally accepted standard at this point. Maybe someday. But until you have some type of actual tumor or you try to find a clinical trial for stage III NED, you don't have many options.
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- October 28, 2014 at 3:19 am
Without measurable disease somewhere, there really isn't much you can do. You're still considered stage III. That test sounds interesting, but it's hardly a universally accepted standard at this point. Maybe someday. But until you have some type of actual tumor or you try to find a clinical trial for stage III NED, you don't have many options.
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- October 28, 2014 at 9:28 am
should stage I be asking their doctor for this test to monitor?
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- October 28, 2014 at 10:21 am
I don't know anything about the test you are using. However, if you are stage III and are interested in taking action…there is an NED trial for folks Stage III and IV combining ipi and nivo available at Moffitt in Tampa, Florida.
Here's a description of it from my blog: "A new cohort #5 has been created. It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV. Due to the high incidence of side effects with the prior combo….the dosages were flipped. These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg. Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan. There is no HLA typing requirement as no vaccines will be given."
Here is a link to it on the clinicaltrials.gov site (scroll on down once at this trial!): http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160
You can also go to the first page of clinicaltrials.gov and put in Stage III and melanoma and see what other options might be out there if you are interested.
I wish you my best, Celeste
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- October 28, 2014 at 10:28 pm
You can call and talk to the coordinator, but my understanding is that HLA typing is no longer a requirement since the vaccines that required that typing are no longer given. Additionally, if you scroll toward the bottom of the clinicaltrials.gov link I gave you…toward the bottom…where it talks about this specific cohort….the ipi/nivo combo (the first cohorts were nivo with vaccines and then nivo only after a complication on ipi with no typing or vaccines) I think you will find the information you need. C
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- October 28, 2014 at 10:28 pm
You can call and talk to the coordinator, but my understanding is that HLA typing is no longer a requirement since the vaccines that required that typing are no longer given. Additionally, if you scroll toward the bottom of the clinicaltrials.gov link I gave you…toward the bottom…where it talks about this specific cohort….the ipi/nivo combo (the first cohorts were nivo with vaccines and then nivo only after a complication on ipi with no typing or vaccines) I think you will find the information you need. C
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- October 28, 2014 at 10:28 pm
You can call and talk to the coordinator, but my understanding is that HLA typing is no longer a requirement since the vaccines that required that typing are no longer given. Additionally, if you scroll toward the bottom of the clinicaltrials.gov link I gave you…toward the bottom…where it talks about this specific cohort….the ipi/nivo combo (the first cohorts were nivo with vaccines and then nivo only after a complication on ipi with no typing or vaccines) I think you will find the information you need. C
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- October 28, 2014 at 10:21 am
I don't know anything about the test you are using. However, if you are stage III and are interested in taking action…there is an NED trial for folks Stage III and IV combining ipi and nivo available at Moffitt in Tampa, Florida.
Here's a description of it from my blog: "A new cohort #5 has been created. It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV. Due to the high incidence of side effects with the prior combo….the dosages were flipped. These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg. Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan. There is no HLA typing requirement as no vaccines will be given."
Here is a link to it on the clinicaltrials.gov site (scroll on down once at this trial!): http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160
You can also go to the first page of clinicaltrials.gov and put in Stage III and melanoma and see what other options might be out there if you are interested.
I wish you my best, Celeste
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- October 28, 2014 at 10:21 am
I don't know anything about the test you are using. However, if you are stage III and are interested in taking action…there is an NED trial for folks Stage III and IV combining ipi and nivo available at Moffitt in Tampa, Florida.
Here's a description of it from my blog: "A new cohort #5 has been created. It will accept 1,500 resected melanoma patients, from Stage III B/C to Stage IV. Due to the high incidence of side effects with the prior combo….the dosages were flipped. These patients will now be given Nivo at 3mg/kg and Ipi at 1 mg/kg. Side effects remain a concern, especially for those at Stage IIIB as their risk for their melanoma is less than that of NED patients Staged IIIC/IV, and such side effects always have to be weighed against risk of disease, but should be decreased for everyone with this particular dosing plan. There is no HLA typing requirement as no vaccines will be given."
Here is a link to it on the clinicaltrials.gov site (scroll on down once at this trial!): http://clinicaltrials.gov/ct2/show/NCT01176474?term=melanoma+adjuvant&rank=160
You can also go to the first page of clinicaltrials.gov and put in Stage III and melanoma and see what other options might be out there if you are interested.
I wish you my best, Celeste
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