Went to see the last Oncologis today = Dr Mark Kris , Memorial Sloan Kettering.
First appt was at Hackensack Univeristy Medical Center, in Hackensack, NJ. Dr Harry Harper.
Here is what we have:
Treatment #1: Hackensack University Medical Center
Taxol and Cisplatin every 3wks for 4 sessions and see if treatment is effective.
Treatment #2: Memorial Sloan Kettering
Vinorelbine and Gemcitabine every 2wks again for 4 sessions.
Any suggestions / comments please share.
Lastly, I read something about Chemosensitivity testing.....is this something that we can ask for ?
Here is my inital post:
http://www.inspire.com/groups/lung-cancer-alliance-survivors/discussion/mom -diagnosed-with-squamous-cell-carcinoma-and-it-really-broke-me-down/
Thanks in advance !!!!!
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Two forms of treatment suggested, by two difference Cancer Centers
- By CrazyEddie
- Posted June 5, 2009 at 8:36 am · 40 replies
- In Treatment options
- Shared with the public
- Edited June 5, 2009 at 8:37 am
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40 replies
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- By robjo122
- Posted August 18, 2009 at 1:24 pm
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Jdmo, You said you are now going to Sloan in basking ridge. I go to NY, & basking ridge is only 30 min. away. I've been wanting to transfer over, but my family is giving me a rough time about it. Their reasoning is Dr. Pietanza is working with a team I should stick with. ---they feel I won't get the best treatment in basking ridge, etc. I have gone all the way to NY, & after blood work my WBC was too low to do treatment. Had to turn around & go home & I was so tired. How do you feel about baksking ridge?
- By gpawelski
- Posted August 17, 2009 at 10:32 pm
- Report post
Why some doctors may not be up to par with chemosensitivity testing may be attributed to NCI's failure at assay-directed therapy.
Good review papers exist on cell-based, cell-death assays and are increasingly appreciated, understood and applied by the private sector and European clinicans and scientists. The literature on these assays have not been understood by many NCI investigators and by NCI-funded university investigators, because their knowledge was almost always geared towards an assay technique (cell-growth) that hasnt' been used in private labs for almost twenty years now.
NCI studies never determine if "fresh" tumor assays worked. All of the considerable literature which supports the use of these assays in patient management has been based on true "fresh" tumor (non-passaged) cell-based assays.
Some years ago, NCI made an attempt to study assay-directed therapy of lung cancer. The study was a failure because it was done with established permanent cell lines (instead of fresh cells), which have been conclusively proven to have no predictive value at all with respect to the clinical activity spectrum. The result was a dismal 11% response.
The NCI used "cell lines" because the major expertise of the investigators who carried out any study was in the creation of cancer "cell lines" and they wanted to see if they could perform assays on these "cell lines" to use in patient therapy. The results showed they were able to test successfully only 22% of specimens received, including only 7% of primary lesions.
This contrasts with a 75% overall success rate reported by earlier investigators who used the same assay system in "fresh" tumor and a routinely obtained >95% success rate using improved (cell-death) methods available today.
The NCI spent $15 million on a single-cell suspension "fresh" tumor assay with cell proliferation (cell-growth) rather than cell-death as an endpoint. When that didn't work, they folded their hand and specifically discouraged future applications of cell culture testing in their grant and contract guidelines, dating from the late 1980's. They never supported any drug development work based on primary cultures of three dimensional cell clusters with cell-death endpoints, which very nicely recapitulate known disease specific activity endpoints.
Then later, there were sophisticated programs to discover gene expression microarrays which predict for responsiveness to drug therapy. The NCI had a huge lab working on microarrays to look for patterns of mRNA and protein expression which are supposed to be predictive of chemotherapy response. They spent 2 years trying to find patterns which correlated using the NCI's various established ovarian "cell lines."
They thought they had something, but when they started to apply them to "fresh" tumor specimens, none of the results in the "cell lines" was applicable to the "fresh" tumors. Everything they worked out in the "cell lines" was not worth anything and they had to start over from square one.
However, the limitations and non-applicability of the NCI efforts, failed to realize that the way to identify informative gene expression patterns is to have a "gold standard" and the (cell-death) cell culture assays are by far the most powerful, efficient, useful "gold standard" to have, adding the potential value of the assays to individualize cancer therapy.
It was routine for the NCI to append statements to grant and contract initiative announcements that applications relating to cell-based, cell-death assays were strongly discouraged. Dr. Dan Von Hoff (after his failed attempt at the old technology cell-proliferation assays) published a paper in 1990 in which he stated that clinical trials of cell culture assays would never be supported. And the cooperative groups have utterly refused to do the studies. Why should they? Five times as much work for much less (financial) reward.
There was an enormous amount of published, peer-reviewed research documenting the "accuracy" of cell-based, cell-death assays. Scores of studies in thousands of patients. Based on both response and survival, but all of it excluded from the ASCO and insurance industry reviews. And it's the only evidence existing to validate any other medical test used as an aid in drug selection. Disallow the introduction of published, peer-reviewed evidence documenting accuracy. While allowing the introduction of hearsay, unstated, undocumented, undescribed, unpublished, unpeer-reviewed non-evidence.
No one is seriously proposing that any of the molecular tests now available (Oncotype DX, EGFR amplification/mutation) should have to be proven "efficacious" as opposed to merely "accurate" before they are used in clinical decisions regarding treatment selection. Molecular assays have established absolutely no data relating to assay "efficacy" and with much less data relating to assay "accuracy" than exist to support the application of cell-based, cell-death assays.
And yet, the validation standard that some private insurance companies accept from molecular profiling tests is "accuracy" and not "efficacy." The "bar" had been instantly lowered. No longer will it be essential to prove that the use of a diagnostic test improves clinical outcomes, all they have to do for these molecular profiling tests is prove that the test has a useful degree of "accuracy." However, the validation standard ASCO wants for cell-based profiling tests is "efficacy."
There isn't one paper which, by itself, make the case for cell-based, cell-death assays. The data doesn't begin to constitute a series of prospective trials. I wouldn't accept a proposition that the whole thing depends on one study or even one review. You've got to consider the body of literature as a whole. The fact that none of this exists as one neat, convenient paper in the New England Journal of Medicine does not, in any way, negate the existence of this body of information. But, just because trials may have never been done, this should not be the reason for a medical oncologist to refuse to have the tests performed.
Whatever clinical response that has resulted to the average number of patients in a randomized trial is no indication of what will happen to an individual at any particular time. They are trying to identify the "best guess" treatment for the "average" patient. There is no accuracy, nor any proof that what works for the "average" patient population will work for the "individual."
- By ggullo
- Posted August 17, 2009 at 1:03 pm
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Hi: I suggest that you think about having a chemo sensitivity test done. There are numerous labs around the country that provide this service. My wife was diagnosed with stage 3b a year ago the surgeon sent her cells to a lab to be tested. Her cancer was most sensitive to carboplaten and toxal. She was given this combo with concurrent radiation. Her last ct scan/mri/pet scan showed no tumors in her body. For some reason the oncologist who we are very pleased with was not up beat on accepting the test result. good luck sue and gene
- By cards7up
- Posted August 17, 2009 at 1:00 pm
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Please know there really is nothing you could have done any differently. The specialists don't even have all the answers. It may have been to far gone to be of help. Just know she is now at peace and no longer suffering.
Take care, JC
- By CrazyEddie
- Posted August 17, 2009 at 12:36 pm
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Don't understand your reply my friend.
- By CrazyEddie
- Posted August 17, 2009 at 12:36 pm
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Thank You ! your words are so appreciated now.
- By CrazyEddie
- Posted August 17, 2009 at 12:35 pm
- Report post
Cards7up,
Then maybe you can relate to how I am thinking. My Mom's cough was bad. it was constant. She was her normal self even with the cough. Doctor said we needed to start treatment, so we pulled the trigger and went with Sloan Kettering. Dr Kris and his staff were excellent. But like you suggested, it seems after my Mom started her Chemo, it was down hill from there. I considered the Chemo sensitivity testing, but Dr Kris' office adviced not to do. My Mom had 3 treatments, that was administered every 2wks. Not sure if the 3wk cycle would have been as effective, but a little more time in between would have helped her to recover. I don't know...I am no doctor and I am not totally sure what I could have done differently here.
Thanks
- By cards7up
- Posted August 17, 2009 at 12:16 pm
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So sorry for your loss. I didn't see which route you ended up taking as far as the chemo? Did you go to Sloan? That would have been my choice. Sometimes chemo works and sometimes it doesn't. My mom passed on 7/11/09 after only one treatment of chemo. I have since learned, that she had one of the oldest cancer drugs and one of the worse to tolerate. She went downhill so fast, I really don't think there was anyway to help her. I am only glad that she didn't suffer long. Your mother will always be with you, we never forget them. Take care, JC
- By CKP
- Posted August 17, 2009 at 11:56 am
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I am so sorry to hear this! Please don't be hard on yourself, I know you did the best you could. Be angry at the cancer, not yourself.
It is obvious by your posts how much you loved your mother and I know you will miss her.
Hugs,
Cindy
- By CrazyEddie
- Posted August 17, 2009 at 10:07 am
- Report post
My Mom passed on July 29th. Two days after her 73rd B-day. Never thought I would be here posting this, but things did not work out as I would have liked.
They asked if I wanted an autopsy, but I declined. If I had to call it....(and please note I am no doctor), the Chemo seemed to really have taken its toll on her. The coughing almost stopped completely, but by the time she was over one treatment, it was time for another.
Hoping someone can learn from my experience, so I will still be around. I have been to the cemetary everyday since burying her on Aug 4th, so these are very challenging times for me right now. My Mom asked that I help her to feel better, so initially I thought I let her down, but I am better today than I was say a week ago. Still going thru some tough times, but I am trying to puch thru it.
Love you Mom !
Eddie
- By CrazyEddie
- Posted June 24, 2009 at 1:37 pm
- Report post
Chemo treatment started on June 16th. Next treatment on June 30th. Mom is still fatigued and not eating well despite taking Megace.
Thanks to you all for the emails and replies above. I can not thank you enough for your support and well wishes !
- By CrazyEddie
- Posted June 9, 2009 at 3:57 pm
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Medi-Port will be installed on Monday, Chemo Treatment starts Tuesday the next day.
- By peyz33
- Posted June 9, 2009 at 9:52 am
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wow - never had that with him. all i canre about is my medical treatment - let his wife deal with the other crap.
- By BeBeReader
- Posted June 9, 2009 at 8:36 am
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Dr. Abe C--- or however it is spelled is on Sirius Doctor Radio, and makes repeated disgusting sexist comments. I think there are other "geniuses" around who are decent and don't think that demeaning women is fun, but if you are confidant in him, then so be it.
- By staceym
- Posted June 9, 2009 at 8:21 am
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CougarLady - That is way too long - NYU has been very responsive - who are you seeing?
- By CrazyEddie
- Posted June 9, 2009 at 6:19 am
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We go for another consult today with a Dr Bain. This is to see if my Mom is suitable for the Port Implant. Dr Kris said he would like to use the Port to administer the Chemo. After the consult, and if Dr Bain believes all is well, they will give us a date to implant it. Not sure if there is a lag time between when the do the implant and when Chemo can start, but Dr Kris told us last week he would like to start the Chemo this Thursday, but this is not going to happen. We do have a treatment appt for June 16th, but this is all contingent on when the port can be implanted.
Also, Dr Kris' Nurse explained to my sister that the Chemosensitivity testing is not as good when the client has Squamous cell Cancer. I am still trying to speak with her to better understand what she means.
Little frustrated now....but trying to keep my cool.
Thanks again for all the replies...
- By gpawelski
- Posted June 7, 2009 at 4:24 pm
- Report post
CrazyEddie
If you're talking about MSK and Hackensack, you're in the NYC area. There is a Manhattan oncologist who's been utilizing the assays for his patients for over 18 years.
Ask Dr. William R. Grace, a board certified community practicing oncologist, with nearly two decades in academic oncology as Chief of Medical Oncology and Cancer Research at St. Vincent's Hospital and Medical Center of Manhattan.
He has co-authored over twenty publications in immunology and cancer research and has had extensive clinical experience in both the old clonogenic and the newer apoptotic assays.
Given his experience with apoptotic assays, noting their accuracy in predicting clinical outcomes, defining unique chemotherapeutic synergies and their frequent curative value in many adult malignancies which all current literature would deem incurable, he told a Baltimore MedPac meeting in 1999 that he believes it is unethical not to use cell culture assay testing in his practice.
- By peace33
- Posted June 7, 2009 at 12:41 am
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Hi! My Mom was diagnosed Stage 3A NSCLC, and is now going through weekly carbo/taxol chemo along with daily radiation - only two weeks into it, her tumor shrank "significantly." We also live in NJ and are following the Sloan protocol via her Sloan trained doctors at Valley Hospital. It sounds like your mother is in wonderful hands - what helped me is accompanying her to herdoctor's appointments, taking notes, and supporting her with fresh foods/good nutrition, etc. Let me know if I canbe of any help - I'm now about 8 months into this. Take care of yourself!
- By CrazyEddie
- Posted June 7, 2009 at 12:11 am
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Thanks Everyone !!!!
another question.....and maybe I am to much with trying to plan....but my Mom will have a port implanted on Tuesday that will be used to administer the chemo. just a little FYI...
but do i need to do anything extra to prepare for the adverse or after effects of the treatment ? meaning.....will I need bedpains for my Mom ? In my Nursing class, it says that those getting treated with Chemo should be careful of going out during the sunny days.....if my mom is getting treatment every other week......does this mean throughout the time she is just being treated ?
I forgot to ask this during the appt....I will, but I just wanted to ask you good people for any suggestions as well rather than waiting to the last minute.
So bedpain, should my mom be covered when going out ? and anything else you can suggest will be appreciated.
June 11th, Treatment #1.
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