lung mets

Dear Nickk, I am sorry to hear this and I can’t help on Irinotecane but if you go to our Search engine at the top and enter Irinotecane, I know quite a few posts will appear about it. Wishing you the very best and please keep us updated.

Hope that your wife’s biopsy goes well for her Jet. Please let us know how things go.

My best to you both,

Gavin

Thank you for that information.

By the way we hit a bump in the road about genetic sequencing.
There is not enough tissue left from the original biopsy (Nov. 2013) so my wife will need a repeat biopsy for new tissue. She plans to continue on with the new biopsy

I had the sequencing done, and have yet to receive a bill. So I’m hoping Medicare and my supplement covered it. I agree it has a long way to go, but the day is near! In 3 years, so much has changed!
From the sequencing, as mentioned above, it was determined I have the same mutations as some breast cancer. And there is a trial specifically targeting this mutation. So, while the trial I am on is still working, my onc and I have decided to let the many breast cancer researchers and fighters do the first part of the breast cancer trial. I will wait and jump to that trial when the time comes.
And, I will have to add that you may have to fight for coverage from your insurance company for non-approved treatment for cc. It can be a pain, but use your onc and staff, and your insurance company’s nurse navigators.

My tendency is to know as much as you can about your particular cancer. So I recommend having genetic sequencing testing done. I mentioned before that if a particular mutation is found for which there is a drug being used for another type of cancer (lets say kidney cancer) then I doubt your oncologist is going to withhold it from you using it. Doctors do it all the time. That is, use a medication that is not totally approved by the FDA for that condition but has possible benefits based on SCIENCE.

University of Chicago oncologist Dr. Catenacci told us this and that he would write a letter to the insurance company if he thought there was a scientific reason to use the drug. But he will not recommend a drug that has no scientific basis.

The cost may be high for the testing but if it could enhance life or keep my wife alive until a better
treatment comes along then we plan go for it. I have spoken to one company and will waive the cost under certain conditions.

Wow…..that was so far over my head!!! I’m an accountant and hated anything to do with science when I was in school. But in any case, I’m trying to do my best to understand. Anyway, with my husband, Norbert, who has no desire to get into any trials, I’m wondering if it would be helpful to have any of these testings done? I’m thinking for the sake of future science and understanding of this cancer? And how and where would we go about to get it done? We have 4 sons and a daughter and God forbid any of them would have to go though what Norbert is going through. A little guidance on how to go about this would be appreciated!!
Thanks,
Olga

Okay…so I just have to chime in here real quick. I will also post this in the clinical trial section as an answer to the questions asked there. I have to say that genome sequencing has been a huge success in my clinical trial at NIH, it is what helped find the reactive t-cell and ultimately been shrinking my tumors….so in response to the questions asked in the clinical trial section, I contacted my research scientist at NIH to ask what exactly he needed for sequencing. Below is the response he sent and it was very educating to my simple mind! I hope this helps to answer some questions………

There are several types of sequencing, the most widely used in the clinic is “targeted sequencing”. This type of sequencing only looks at a relatively small number of genes and tests to see if these genes contain mutations. The reason why this is used in the clinic is because mutations in these specific genes can predict whether a certain drug will be effective or not, so this can be used to guide a treatment. However, this type of sequencing would likely not be very helpful to us because only a relatively small number of genes are assessed. With fewer genes assessed, we would have much fewer (or no) mutations to test. It’s already a “needle in a haystack” when we look at all the mutations, so it would be more like a “needle in a football stadium” if we only evaluated a few mutations.

Then there is whole-genome sequencing (WGS), and whole-exome sequencing (WES), both of which can evaluate the presence of mutations in most genes in the human genome. These are the types of sequencing that we can use. Both can give reliable data if the “read coverage” is high enough. What this means is that the “deeper” we sequence (the more sequence reads we get for a particular gene), then the more confident we are that it is a true mutation. For example, if we only detected one sequence containing the mutation out of 5 sequences read, this would be 20% mutation frequency, but we would be more confident that this is a true mutation if we detected, say, 20 sequences out of 100 sequences read (still 20%). This is because there are errors that can occur during DNA sequencing. The 1/5 could be an error and therefore not a real mutation, however, it’s statistically less likely that 20 errors occurred out of the 100.

The difference between whole-genome sequencing and whole-exome sequencing is that whole genome is just that, it reads every single base in your genome. However, you might remember that the importance of DNA is that it ultimately encodes for protein, which is what does all the work in our cells and tissues. It turns out that only about 1-2% of the entire genome encodes for protein. So whole-exome sequencing just sequences this 1-2% of the genome. Since mutations are only relevant to use if they affect the protein, whole-exome sequencing can be more efficient (since you don’t have to sequence 98-99% of the irrelevant DNA). Both have the advantages and disadvantages (which I won’t get into here).

But to answer your question, we have used both whole-genome and whole-exome sequencing, although the vast majority of our experience is with whole-exome. It is also very important that both the tumor and a normal source of DNA from the same patient are sequenced. For example, you can sequence peripheral blood cells (from a blood draw) as a source of normal DNA. We need this as a reference to identify what is a true mutation (since, in most cases, only the tumor will have the mutation).

So in an ideal situation, a patient would come into clinic with their tumor already sequenced. This would save us about 3-4 weeks in our testing process. However, as you know, there are many factors that have to fulfilled before a patient could even be enrolled onto our protocol. There are the clinical parameters that have to be fulfilled, and it turns out when our MDs screen patients, unfortunately many are not eligible. And there are also limitations in our lab and clinical trial capacity, since we can only handle a relatively small number of patients at any one given time.

So I guess one thing I would make clear to potential patients is that even if they get sequencing done, there’s no guarantee that he/she would make it onto our trial. And even if they make it onto our trial, we are at such an early stage of research and development that we don’t know if we would even find mutation-reactive T cells to use for treatment. Although it would be unfortunate if patients got sequencing done and couldn’t get onto our trial, it potentially wouldn’t be for nothing, because the sequencing data could be used to advance science; genomics experts around the world are working together to catalogue the sequences of thousands and thousands of tumors to try to understand cancer better which hopefully will lead to better treatments in the future.

What a lot of information…..Hope to everyone! Melinda