Questions for Sherri and others about multiple chemo regimens & recurrence

Callaloo

I haven't had any treatment in 6 months and, although docs won't say I'm in remission or even NED, things appear to be stable. I've learned from reading this forum how quickly that can change for stage IV EC, or any stage for that matter. I just met with my oncologist and we discussed the following questions which maybe you all can offer some opinions on:

1. I've read here that some of you (maybe ChiefTom?) are continuing chemo even though in remission. Some have mentioned taking Xeloda as “maintenance chemo”. My doc says he's not aware of any evidence that continuing chemo in the absence of active disease improves survival, and it would definitely damage my quality of life which right now is pretty darn good. Has anyone stayed on chemo, presumably on a reduced dose, for the purpose of maintaining the status quo? And what drugs have they been and where were you treated? And for how long?

My doc says he will refer me to a large research center if I want to pursue this, but I don't want to go tilting at windmills.

2. My doc has ordered the KRAS test, but in addition, he also mentioned tumor profiling in order to try to tailor any future chemo regimen to my particular case. He acknowledges that this practice has not yet gained wide-spread acceptance in the oncology world. Has anyone ever had the gene testing done at Caris labs in Arizona or anywhere else for purposes of getting a custom-tailored chemo cocktail? I did a search here and only found one mention of Caris labs by Betty in Vegas. Anyone else?

3. In the absence of tumor or gene profiling, what are the other methodologies used to design the next treatment plan when there's a recurrence? Or is it, as I suspect, just a matter of guesswork? Sherri writes that her Jim has had Carbo/Taxol, Oxaliplatin/irronitican, cisplatin/Epirubicin/Xeloda.

Sherri, what's your take on whether these drugs and drug combinations were chosen systematically or just haphazardly?

I believe there is some consensus on the first line treatment (with some variations based on patient performance and comorbidities) – which all include cisplatin or carboplatin or similar. But what about second line treatment at recurrence? It seems like what patients get at recurrence is all over the board. Is there a checklist of chemo regimens where you just start going down the list – if this doesn't work, let's try the next one. Is there any consensus as to where to start, what's at the top of the list?

It may be premature for me to be asking these questions. My oncologist thinks it is, but he's is very accommodating and understanding. I just feel like, the first time around, at the time of my diagnosis, I was sucker punched. I'm just hoping to be more prepared the next time this beast roars its head.

I try hard not to even think about these things and just try to enjoy being symptom-free. But it's hard just to sit idly by and wait for the next punch.

Thanks for listening.

Lu in Oregon

ChiefTom

to continue chemo or not
Hi Lu- My husband Tom has been on the same chemo for the past 7 months. Cysplatin and Irinotecan once a week for two weeks, then one week off. Thank God he has not suffered any severe side-effects. He has some hearing loss, peripheral neuropathy and his platelets are sometimes low. He has no neausea or difficulty swallowing, either.

Tomorrow he is going skiing. He has been able to maintain his quality of life. We have been blessed.

His onc said that since he tolerates this regimen so well, he will continue it. He said when the EC returns, it is harder to get under control. His is under control now and I am afraid for him to stop, honestly.

If/when the side-effects become too much, I guess we will have to change things.

Every day is a gift. Prayer works.
God Bless,
Liz

Unknown

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Unknown

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mrsbotch

unknown said:

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Hi Lu
I had spoken to Sherri the other day about the BIG Guns of Chemo. They put my husband on them from the very beginning. Cisplatin, Taxotere and 5FU. let me tell you he has had one good week since he started and that was the 3rd week of his 1st cycle. he just finished Cycle 5 on Wednesday and I am surprised he is still with us. This chemo has given him NO QUALITY OF LIFE. I know Lu we have e-mailed each other too.

I am only hoping that after his Pet Scan on Feb 2nd he will not need to do his 6th one of these treatments. It has been brutal. I do not even recognize him as my husband anymore as he has NO ENERGY and No QUALITY. It is so hard to see.

If it works we will be very happy but if he has to go to something else I really don't know how he will react. He is so unhappy with his life now and this man used to be a BIG BAD POLICEMAN, very active and very happy.
I pray for a cure an that is all I want for all of us.


barb

paul61

Rational Therapeutics, Inc.
Lu,

I like you have given some thought to how I would approach any required follow up chemo in a more educated fashion than my first time around. At the moment God has been kind enough to place me in remission but one can never take that for granted.

I thought you may find the information below interesting:

____________________________________________________________________
http://www.lef.org/protocols/prtcl-024.shtml#choosingbest

It is impossible to design a single chemotherapy protocol that is effective against all types of cancer. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability. This protocol conveys the findings from published scientific studies so that a cancer patient will have a logical basis to augment the effects of chemotherapy and also reduce the potential for side effects.

How Does Chemotherapy Work?

According to the National Cancer Institute, almost all normal cells grow and die in a controlled way through a process called apoptosis.
Cancer cells, on the other hand, keep dividing and forming more cells without a control mechanism to induce normal apoptosis.

Anticancer drugs destroy cancer cells by stopping them from growing or dividing at one or more points in their growth cycle. Chemotherapy may consist of one or several cytotoxic drugs that kill cells by one or more mechanisms. The chemotherapy regimen chosen by most conventional oncologists is based on the type of cancer being treated. As you will read later in this protocol, there are factors other than the type of cancer that can be used to determine the ideal chemotherapy drugs that should be used to treat an individual patient.

The goal of chemotherapy is to shrink primary tumors, slow the tumor growth, and kill cancer cells that may have spread (metastasized) to other parts of the body from the original, primary tumor. However, chemotherapy kills both cancer cells and healthy normal cells. Oncologists try to minimize damage to normal cells and to enhance the cell killing (cytotoxic) effect on cancer cells. Too often, unfortunately, this delicate balance is not achieved.

Clinical studies show that for certain types of cancer chemotherapy prolongs survival and increases the percentage of patients achieving a remission. A partial remission is defined as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. The goal of all oncologists is to strive for a complete remission that lasts a long time--a durable complete remission, or CR. Unfortunately, the vast majority of remissions that are achieved are partial remissions. Too often, these are measured in weeks to months and not in years. Some types of cancer do not show any meaningful response to chemotherapy.

CHOOSING THE BEST CHEMOTHERAPY DRUGS TO KILL YOUR TUMOR
- Protecting Against Anemia
- Inhibiting the COX-2 Enzyme
- Controlling Cancer Cell Growth
- Combining a COX-2 Inhibitor with a Statin Drug and Chemotherapy
- Should Antioxidants Be Taken at the Same Time as Chemotherapy

It is highly desirable to know what drugs are effective against your particular cancer cells before these toxic agents are systemically administered to your body. A company called Rational Therapeutics, Inc., performs chemosensitivity tests on living specimens of your cancer cells to determine the optimal combination of chemotherapy drugs.

Dr. Robert Nagourney, a prominent hematologist/oncologist, founded Rational Therapeutics, Inc., in 1993. Rational Therapeutics pioneers cancer therapies that are specifically tailored for each individual patient. They are a leader in individualized cancer strategies. With no economic ties to outside healthcare organizations, recommendations are made without financial or scientific prejudice.

Rational Therapeutics develops and provides cancer therapy recommendations that have been designed scientifically for each patient. Following the collection of living cancer cells obtained at the time of biopsy or surgery, Rational Therapeutics performs an Ex-Vivo Apoptotic (EVA) assay on your tumor sample to measure drug activity (sensitivity and resistance). This will determine exactly which drug(s) will be most effective for you. They then make a treatment recommendation. The treatment program developed through this approach is known as assay-directed therapy.

At present, medical oncologists, according to fixed schedules, prescribe chemotherapy. These schedules are standardized drug regimens that correspond to specific cancers by type or diagnosis. These schedules, developed over many years of clinical trials, assign patients to the drugs for which they have the greatest statistical probability of response.
Patients with cancers that exhibit multidrug resistance will likely receive treatments that are wrong for them. A failed attempt at chemotherapy is detrimental to the physical and emotional well being of patients, is financially burdensome, and may preclude further effective therapies.

Rational Therapeutics' EVA assay uses your living tumor cells to determine which drug or drug combination induces apoptosis in the laboratory. Each patient is highly individualized with regard to sensitivity to chemotherapy drugs. A patient's responsiveness to chemotherapy is as unique as their fingerprints.

Rational Therapeutics, leading the way in custom-tailored, assay-directed therapy, provides personal cancer strategies based on the tumor response in the laboratory. This eliminates much of the guesswork prior to the patient undergoing the potentially toxic side effects of chemotherapy regimens that could prove to be of little value against their cancer. Rational Therapeutics may be contacted at:

Rational Therapeutics, Inc.
750 East 29th Street
Long Beach, CA 90806
Telephone: (562) 989-6455; Fax: (562) 989-8160
Web site: www.rationaltherapeutics.com
_________________________________________________________________________________________

I know various oncologists have varying opinions about the value of the services that Rational Therapeutics offers. But this is definitely a conversation I intend to have with my oncologist is the necessity dictates.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Callaloo

Good comments all, thank you
This is all very helpful. In fact, I've just updated my profile with my treatment history because I'm helped by knowing about other's.

Sherri: Insightful and interesting reply, as usual. I have wondered why Jim and others with widespread metastases weren't started out on 5FU, and what you say makes sense. The C/F combo has a scary rate of treatment-related deaths, and I guess that's why many doctors are switching to irinotecan as less toxic. I just wonder, though, why I wasn't offered the irinotican like ChiefTom was. Maybe because I didn't know enough to ask.

I think I read that Jim continued working throughout his treatment. I had 5FU and spent most of the spring and summer of 2010 in bed, in pain, and at times not wanting to go on. And yet my prognosis is no better or worse than Jim's was at this point. Having gone through that, I now know better what “quality of life” means, and how important it is.

That said...
Barb: Hang in there. I know exactly what you mean about your husband. I scared myself everytime I saw my reflection in the mirror. But having come this far and endured so much, your husband shouldn't skip that last round if his lab work holds up. 5FU is nasty and powerful stuff. It doesn't work for everyone, but when it does, it does. And if that happens, you will be grateful for it.

William: Yes, my doc is looking into phase I trials at U of AZ run by a company called TGen whose research focus is in designing treatment with cancer agents selected based on the unique molecular profile of a patient's tumor. These are very experimental. Your articles are along the same lines as TGen. It helps to have multiple sources.

Paul: I haven't heard of Rational Therapeutics, but I was just reading about a similar approach by an oncologist named Larry Weisenthal (http://weisenthalcancer.com/index.htm) who does “functional tumor cell profiling” on live tumor cells to personalize chemo treatments.

This method differs from the gene profiling of Caris labs or TGen, in that it is based on the response to chemo agents on the live tumor cells. This method actually makes more sense to me and seems to have more practical value than molecular profiling, but it does require live cells, which, thankfully, I don't have at the moment. But when the time comes, I will be sure to have them sent for profiling before they are frozen.

But back to reality. I just got a letter today from my insurance company denying my request for KRAS testing on the grounds it is merely “investigational and experimental” and not medically necessary. I can only guess what their response will be to molecular profiling. I guess this has been an interesting academic discussion.

Lu in Oregon

Unknown

Callaloo said:

Good comments all, thank you
This is all very helpful. In fact, I've just updated my profile with my treatment history because I'm helped by knowing about other's.

Sherri: Insightful and interesting reply, as usual. I have wondered why Jim and others with widespread metastases weren't started out on 5FU, and what you say makes sense. The C/F combo has a scary rate of treatment-related deaths, and I guess that's why many doctors are switching to irinotecan as less toxic. I just wonder, though, why I wasn't offered the irinotican like ChiefTom was. Maybe because I didn't know enough to ask.

I think I read that Jim continued working throughout his treatment. I had 5FU and spent most of the spring and summer of 2010 in bed, in pain, and at times not wanting to go on. And yet my prognosis is no better or worse than Jim's was at this point. Having gone through that, I now know better what “quality of life” means, and how important it is.

That said...
Barb: Hang in there. I know exactly what you mean about your husband. I scared myself everytime I saw my reflection in the mirror. But having come this far and endured so much, your husband shouldn't skip that last round if his lab work holds up. 5FU is nasty and powerful stuff. It doesn't work for everyone, but when it does, it does. And if that happens, you will be grateful for it.

William: Yes, my doc is looking into phase I trials at U of AZ run by a company called TGen whose research focus is in designing treatment with cancer agents selected based on the unique molecular profile of a patient's tumor. These are very experimental. Your articles are along the same lines as TGen. It helps to have multiple sources.

Paul: I haven't heard of Rational Therapeutics, but I was just reading about a similar approach by an oncologist named Larry Weisenthal (http://weisenthalcancer.com/index.htm) who does “functional tumor cell profiling” on live tumor cells to personalize chemo treatments.

This method differs from the gene profiling of Caris labs or TGen, in that it is based on the response to chemo agents on the live tumor cells. This method actually makes more sense to me and seems to have more practical value than molecular profiling, but it does require live cells, which, thankfully, I don't have at the moment. But when the time comes, I will be sure to have them sent for profiling before they are frozen.

But back to reality. I just got a letter today from my insurance company denying my request for KRAS testing on the grounds it is merely “investigational and experimental” and not medically necessary. I can only guess what their response will be to molecular profiling. I guess this has been an interesting academic discussion.

Lu in Oregon

This comment has been removed by the Moderator

Donna70

Callaloo said:

Good comments all, thank you
This is all very helpful. In fact, I've just updated my profile with my treatment history because I'm helped by knowing about other's.

Sherri: Insightful and interesting reply, as usual. I have wondered why Jim and others with widespread metastases weren't started out on 5FU, and what you say makes sense. The C/F combo has a scary rate of treatment-related deaths, and I guess that's why many doctors are switching to irinotecan as less toxic. I just wonder, though, why I wasn't offered the irinotican like ChiefTom was. Maybe because I didn't know enough to ask.

I think I read that Jim continued working throughout his treatment. I had 5FU and spent most of the spring and summer of 2010 in bed, in pain, and at times not wanting to go on. And yet my prognosis is no better or worse than Jim's was at this point. Having gone through that, I now know better what “quality of life” means, and how important it is.

That said...
Barb: Hang in there. I know exactly what you mean about your husband. I scared myself everytime I saw my reflection in the mirror. But having come this far and endured so much, your husband shouldn't skip that last round if his lab work holds up. 5FU is nasty and powerful stuff. It doesn't work for everyone, but when it does, it does. And if that happens, you will be grateful for it.

William: Yes, my doc is looking into phase I trials at U of AZ run by a company called TGen whose research focus is in designing treatment with cancer agents selected based on the unique molecular profile of a patient's tumor. These are very experimental. Your articles are along the same lines as TGen. It helps to have multiple sources.

Paul: I haven't heard of Rational Therapeutics, but I was just reading about a similar approach by an oncologist named Larry Weisenthal (http://weisenthalcancer.com/index.htm) who does “functional tumor cell profiling” on live tumor cells to personalize chemo treatments.

This method differs from the gene profiling of Caris labs or TGen, in that it is based on the response to chemo agents on the live tumor cells. This method actually makes more sense to me and seems to have more practical value than molecular profiling, but it does require live cells, which, thankfully, I don't have at the moment. But when the time comes, I will be sure to have them sent for profiling before they are frozen.

But back to reality. I just got a letter today from my insurance company denying my request for KRAS testing on the grounds it is merely “investigational and experimental” and not medically necessary. I can only guess what their response will be to molecular profiling. I guess this has been an interesting academic discussion.

Lu in Oregon

Lu, just wanted to say about 5FU
Hi,
I had T3N1MO and had Cisplatin and 5FU for my preop chemo regimen. I was 65 and was considered healthy except for RA and some lung decreased capacity. It was standard at our cancer center to admit people at least around my age to the hospital for each cycle of chemo because of the fear of kidney failure and also to administer much fluid along with the therapy. I think this plan really helped. I did get atrial fib and neutropenia at the end of my cycles but I survived to go on to surgery. Just thought that a lot of times people get that regimen as outpatients and if they have any underlying health problems it is much more of a burden on them physically. I hope your husband does better and that all this chemo has worked for him. Prayers for all, take care,
Donna70

Callaloo

Insurance
William,

I have really good insurance, and this is the only thing they've questioned, and I don't really blame them since I don't have any "active" tumors at this point. My doctor has asked the medical director of the company to reconsider, and they've agreed to take a second look. However, I am not going to file a formal appeal. I have decided to take your advice and just enjoy this respite from treatment and illness.

Oh, and I think Donna's comment was directed to Barb ("MrsBotch") about her husband's chemo ordeal. I agree that IV hydration might help if he's not getting it. It sure made the difference for me.

Best to you all,
Lu