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Chemotherapy doesn't always work

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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: 13 Apr 2008 at 4:03pm
Billie,
 
I think your sister's onc meant that for TNBC there are no known targeted treatments other than chemo, like there are with hormone positive cancers.  There are a number of chemos to try, but only chemo.
 
Hopefully, there will be breakthroughs in finding targeted treatments for us TN'ers.
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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jsouthy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jsouthy Quote  Post ReplyReply Direct Link To This Post Posted: 13 Apr 2008 at 5:18pm
I ordered Dr. Ralph Moss's report in October of '06, I think. He sends out updates when available and I have an updated version since then. I have it on file. I don't remember anything being said about NOT sharing it with others. I could probably email it to you if you like, it is 200-300 pages, at least.
It is very thorough regarding conventional and alternative treatments.
You can also get his weekly newsletter for free if you go to his website and sign up. www.cancerdecisions.com
His newsletter today spoke of an upcoming documentary on PBS:
 
On April 16th, PBS will air a 2-hour long documentary titled "The Truth About Cancer."

The film explores the current state of knowledge concerning cancer and seeks to understand why the disease continues to be so often fatal in spite of the elapse of more than three decades since the congressionally mandated War on Cancer began.

You can read about this documentary and check local PBS listings here:
http://www.pbs.org/wgbh/takeonestep/cancer/about.html

Contributing to the documentary was Guy B. Faguet, MD, whose excellent book, The War on Cancer, I reviewed two years ago in this newsletter:

To read my review of Dr. Faguet's book please click or go to:
http://www.cancerdecisions.com/040206.html

Joanne

dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: 13 Apr 2008 at 5:20pm
Dear Caryn,
 
I ask because I was tempted to purchase his report - apparently it is 200 to 300 pages. 
 
I understand he has mellowed his position somewhat regarding chemotherapy and I wondered if you had any direct knowledge.
 
I imagine it was an education to be able "pick his brain" so to speak.
 
I cannot tell you how much I admire you for your contributions and ongoing involvement to enlighten and support other women with triple negative breast cancer. You are a role model.
 
Connie
 
 
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jsouthy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jsouthy Quote  Post ReplyReply Direct Link To This Post Posted: 14 Apr 2008 at 3:34am
I just opened up my file with his breast cancer report and it is 500 pages!
Joanne
dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47
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chicklitzz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chicklitzz Quote  Post ReplyReply Direct Link To This Post Posted: 17 Apr 2008 at 4:22pm

Hi Elizabeth, here I am...I live on the Key Peninsula, past Gig Harbor, and yeah, the sun is shining. I'm sorry to hear about the Cisplatin, I had that as well, I noticed, with me anyway, that that the worse the symptoms the better the chemo seems to work, so hopefully it's kicking butt for you. Rads stink but so much better than chemo, will you be doing rads? If you do make sure you get a prescription for Biafine, that really really helped my skin. That's great you're seeing Dr. Reilly, everyone says he's the best. I still need to make my first appointment, I'm all set up and he has my reports, I just need to make the actual appointment. Do you think it's worth it? What does he do for you exactly? I am two weeks out of radiation and I am taking a break from doctors, no doctors, no doctors!!! I'm juicing also, it sure seems to make me feel better. I'll share my juicing recipe with you if you share yours with me...

Juicing:
 
Spinach (lots to get just a little juice)
Broccoli
Cauliflower
Carrots
Oranges
Apples
Beets (yuck! they're suppossed to be really good for us though)
tomatoes
I tried juicing tumeric root, that didn't work very well
I'm thinking about adding cabbage, I'm hearing really good things about cabbage, unsure if you can juice it though, I'll try.
 
 
Here are my supplements:
 
Vit C 1000 mg
Fish oil 2000 mg
600 mg omega 3 fatty acid
Calcium 1200 mg
CoQ10 200mg
Vit E 800 iu
Spirulina 3g
Max3 IP-6 800mg
Multivitamin
magnesium 250
tumeric root extract 300mg
Goji berry 400 mg
Vitamin D 15000 a day (I'm not sure if I'm absorbing it, my levels are not rising after months of taking excessive doses)
Selenium 200mg
Flax seed oil Large Tbls
 
LOL
 
Wow, can you believe it? I'm the posterchild for SuperSupplements!
Talk to you soon.
 
Best,
Michelle
 
 
 
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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: 17 Apr 2008 at 5:06pm
Cg --
 
I'm sorry I haven't responded sooner.  I never saw your posting -- don't know why -- until tonight.
 
Compared to what I'd heard about Dr. Moss, I guess he has mellowed.  He clearly said that when chemo/rads have been proven to work, by all means, use them.  He just wants 'conventional' medicine and 'alternative' medicine to work together and not 'poo poo' each other.
 
Thank you very much for your compliment.  I hope my posts can help others and that we all can help each other beat this.  We HAVE to.  I'm touched that you think I'm a role model, very touched.
 
Best regards,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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jsouthy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jsouthy Quote  Post ReplyReply Direct Link To This Post Posted: 17 Apr 2008 at 5:22pm
Hi Michelle,
I went to a holistic health spa in Florida last summer for 3 weeks where juicing has been going on for over 30 years. They recommend a base of cucumber and celery. They give a lot of juice and are extremely nutritious. I usually add some leafy greens, like kale, chard, romaine or spinach and either parsley or cilantro. It really helps with many things! I also grow and juice my own wheatgrass, seperatly, everyday! It is very healing. There was even a study that showed it helped with chemo side effects.
 
Is the vitamin D you are taking Vitamin D3 and is it a pharmaceutical grade product?
 
I think that doing anything and everything to build and support the body and mind during treatment, after treatment, from this day on, could add years to our lives! Don't you?
 
I do the following:
 
reflexology
massage
accupuncture
chiropractics
colonics
chinese herbs
visualization
goal setting
prayer/bible reading/church
several supplements
far infrared sauna
daily aerobic exercise
whole food, mainly plant based diet
limit processed foods (can't quite alleviate them!)
 
Joanne
 


Edited by jsouthy - 17 Apr 2008 at 5:24pm
dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: 17 Apr 2008 at 5:36pm
Dear Caryn,
 
Very heartfelt in what I said to you.....
 
I wanted to share something that was just released March 27, 2008
 
by Indiana University Hospital - regarding Phellinus linteus  - I found it as a press release on Medwire but I cannot figure out how to bring it to the site so it will open.
 
But, other research done is very interesting.....regarding its anti-tumor activity - look down through the pages and find the mushroom has a 96% inhibition of cell proliferation.
 
I have asked my son to look for it in Vancouver because I cannot find it here.
 
 
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Elaine View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Elaine Quote  Post ReplyReply Direct Link To This Post Posted: 17 Apr 2008 at 6:14pm

Billie - I'm just wondering if he meant that aside from Chemo that he has no way to treat her.  Because that is true.  Chemo is really all we have  - and radiation.

 
 
Mary's Mom
Elaine
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EWKSeattle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: 20 Apr 2008 at 2:41pm
Hi Michelle,
 
I'm actually doing radiation now, in combination with Cisplatin.  It's a nasty combo, but it's been effective for me in the past.  And like you, it seems like only the really nasty chemos are really effective.  Cisplatin and AC have given me great results.  Less impressive results with most of the others.
 
I've been on some of those supplements you listed.  But the mix changes a lot depending on what chemo or other treatment I'm doing at the time.  Whenever the regimen changes, Dr. Reilly advises different combinations.  I'm surprised sometimes at how chemo-specific it is. 
 
If you decide to come back from your break, I do think it's been worth my time and effort to see Dr Reilly.
 
Happy juicing!
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: 20 Apr 2008 at 7:57pm
Hi all,
 
I just had the Weisenthal tumor sensitivity done Jan 08.  At that time my oncologist needed some "guidance" to decide which chemo I should do next, given the fact that I am stage IV and my tumors have been continuously growing through various treatments since June 07.
 
The Weisenthal report suggested that my tumor was sensitive to Navelbine.  So my oncologist prescribed Navelbine+Xeloda.  Unfortunately my chemo-sensitivity was false for me, the Navelbine+Xeloda treatment failed.
 
So, I don't want to spoil the fun, but chemo-sensitivity is believed to be not always accurate (and I knew this before I got tested), that is why it is not offered to everyone and it has not been adopted as "standard".
 
If I had the chance again, I would probably still do the testing, just out of curiosity, but I'd have to remember that it is not highly accurate.
 
I wonder if Weisenthal Group has any statistics of how many patients their testing were accurate and how many were inaccurate.
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: 20 Apr 2008 at 8:11pm
Elizabeth,
 
I have also gone multiple chemos (AC->T, CMF, Taxotere in adjuvant settings, and for metastatic: Avastin+Taxol, Carboplatin, PARP Inhibitor, Navelbine+Xeloda).
 
I am currently on Avastin+Ixempra, but the insurance already denied the Avastin.  I am in the process of appealing, at the same time the doctor's office also contacted Genentech for patient assistance.
 
But I foresee a HUGE problem (with insurance co.) beyond the current treatment.
 
I do have a stage IV disease, but I do not yet have any symptoms from the cancer itself.  I'm still fully functioning, but yet I have gone through almost all of the approved breast cancer drugs.  After Doxil, Abraxane, and Gemzar next, there will be NO MORE drug I can take.  I will have to go to "off label" and novel drugs like Erbitux, Tarceva, Sprycel and for sure it's going to be an uphill battle with the insurance company.
 
I can't really go the clinical trial route (for free novel drugs) either, because I don't qualify for most of the trials because I have had so many treatments.  They generally only allow up to 3 prior chemo regimens.
 
Anyone else have this problem?
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: 21 Apr 2008 at 6:11am

Pinehouse, your situation sounds much like mine.  2 years of multiple drug regimens.  But no real effects from the cancer itself, for which I count myself very lucky. 

Can I ask why they denied the Avastin?  I thought it was approved for BC?  It makes me nervous because I did have good luck with Avastin last year, and hope that I may be able to go back on it again when I need to.  Confused  I was NED for 9 months last year doing 4 months of Navelbine and Avastin, and then Xeloda and Avastin.  I sure hope you'll get the Avastin.
 
I think the insurance coverage is going to be the defining issue for me (if it isn't already).  It's a bitter pill because the way I cope with this disease is by trying to seek out the positive aspects of every experience, but the insurance company battles are thoroughly negative.  No upsides to be found.  I've looked at all the trials to see how many I would qualify for if I had no other options today, and I'm excluded from all of them because I've done so many rounds.
 
Still waiting for my chemosensitivity results.  The cultures have been ready for over a week, but we got hung up in lost paperwork, and my onc hasn't even told them which drugs to test yet.  Grrrrrrrrr.
 
I just keep hoping I can hang in long enough with the approved drugs till they can approve more.  But the process is just so slow.
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chicklitzz Quote  Post ReplyReply Direct Link To This Post Posted: 21 Apr 2008 at 8:55am
Hi Elizabeth, just curious, have you tried any of the new epothilones that have just come out, I know there is ixabepilone or the one listed in the trial below. I'm hearing very good things as far as efficacy towards the trip negs. Bayer has a study out that is available in our area, here's a link below. If your not eligible for the study maybe an epithilone based regimine is worth looking into and discussing with your oncologist?
Also, I was curious, are you taking turcumin? Talk to you soon. Look the sun is shining! Atleast for another 5 minutes until it snows again. Strange weather lately.
 
Best,
Michelle
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: 22 Apr 2008 at 9:00am
Hi Michelle,
 
I havent tried Ixempra yet.  We're holding it in reserve to see how things go and what kind of luck we have getting some other drugs that are being tested on my tumor (hopefully as we "speak")
 
I did take curcumin when I was on Xeloda, but Dr Reilly stopped it for the Taxotere and Cisplatin regimens for some reason.
 
Back to bed now.  Chemo hit me very hard yesterday.
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: 28 Apr 2008 at 3:29pm
Chemosensitivity results are in.  The tumor in vitro was responsive to Cytoxan and Irinotecan.  I got "intermediate" response to Carboplatin and Topotecan.  Non-responsive to Doxorubicin (Adriamycin), Taxotere, Taxol/Abraxane, Gemzar, Navelbine and Etoposide.
 
I already knew the taxanes didnt work for me, but I'm bummed that Gemcitabine didn't help.  It's one of the few BC-approved drugs I haven't tried yet.   And I was surprised that Doxorubicin didn't work, given how dramatic my initial response was to AC.  But maybe it was the C in the AC that was doing it?
 
I'll see my onc on Wednesday and see what she has to say. . .
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: 28 Apr 2008 at 4:11pm
 
 
 
 
Dear Elizabeth,
 
This is why I am such a believer in the tumor testing. The triple negative standard treatment (taxanes - Carboplatin) did not seem to work on your tumor.
 
Cyclophosphamide(Cytoxan) and Irinotecan - are considerations. I wonder if your oncologist will try the Cytoxan again on a weekly regimen?
 
I was looking for studies for you and I came upon the website above. I am not sure how it works - but for the more technically-gifted it could prove interesting to navigate the discussions.
 
Please keep us updated on what your oncologist decides to do.
 
Connie
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: 29 Apr 2008 at 5:09am
Elizabeth thank you for letting us know.  Fascinating to have something like this in your hand and records so that treatment can be directed towards your situation.
 
Please let us know what your Oncologist has to say,Hug
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: 01 May 2008 at 6:06am
Looks like I'll start doing Irinotecan and Etoposide in June after I'm done with Cisplatin and rads.  My onc had favored this as the next step anyway, and the chemosensitivity test would seem to support that.  She trained with chemo guru Robert Livingston, and says he likes that combination for chemo-resistant BC.  There are some promising trials on Irinotecan (also called CPT-11) in breast cancer just finishing and ongoing right now.  
 
Pray insurance doesn't object. . .
 
Also, I saw a fascinating panel on BC last night here in Seattle.  Most interesting was Nora Disis at Univ Washington who is doing great work in breast cancer vaccines.  They are pretty focused on vaccines that work with Her2 overexpression, but her slides indicated that EGFR (which is basically Her1) is a potential area for vaccine work.  I'm EGFR positive, and I read somewhere recently that most basal subtype BCs overexpress EGFR.  EGFR gets a lot more focus in lung and colon cancers, so vaccine trials may be geared there unless we start to get some focus on EGFR for triple negative BC.  (Dr Carey talked about EGFR inhibitors in her recent teleconference.) I'm going to try to research more of this in a few weeks when the cisplatin/rads fog clears.
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: 01 May 2008 at 6:18am
Thank you Elizabeth for the update, sounds like these may be the meds that will work for you.
 
I appreciate the information you have shared too.  Very interesting.
 
Hold tight and let us know how you are doing,Hug
Stage 2 2003
Stage 1 2007
BRCA 1+
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