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chicklitzz
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Topic: Chemotherapy doesn't always work Posted: Apr 08 2008 at 7:53am |
Let me start by saying I don't want to scare anyone with this topic. I just feel like I should share since it happened to me. When I started 6 months of neoadjuvant chemotherapy I wasn't aware that sometimes certain chemos just don't work on some people. I was on Abraxane (just like Taxol but more natural) which was not working and I found out after I realized myself after 6 weeks that the tumor was actually getting larger and harder, not smaller and softer. After researching it appears that any certain chemo only works about 60 to 70 percent of the time. Why no one told me this, I'm not sure, I can only guess that they didn't want to crush my hopes. But for Pete's sake please just give it to me straight and we'll work with it. I just thought that chemo always worked, I just thought some worked better than others.
After finding this out I decided to have chemosensitivity testing on the tumor when it was removed. No one ever told me this was even possible I just stumbled across it during one of my internet surfing frenzies trying to find out more info that might help. The lab had it sent to Dr. Weisenthal in California. He has a website which better explains this process. They test the actual tumor with different chemos and give you what percentage rate it has of working on your tumor. Most insurance companies do not cover it, it's controversial. It costs me $1800.00. As it turned out, after the surgery to have the tumor removed the chemo the doctor wanted me to go on had an 85% chance of working on my tumor, which was the best odds of all the different chemos. Had I known this earlier I could have avoided Abraxane altogether and the tumor wouldn't have had free reign in my body for 6 weeks.
I really just felt the need to share this because I didn't know and I wish someone would have told me that chemo doesn't always work. For me
the chemosensitivity testing was worth the money. Otherwise, how do you really know after the tumor is taken out if the chemo is working? You can't go by the size of the tumor anymore so you really just hope that the chemo is killing whatever is left circulating around in your bloodstream after the tumor is taken out. You really wouldn't know until it metastasized somewhere else.
God Bless and KEEP STRONG.
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cg---
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Posted: Apr 08 2008 at 8:44am |
I tried to have my tumor chemo tested.....the lab sent normal (fibroglandular breast tissue) instead of enough tumor to be tested. If I have a recurrence...I will do the chemoresistance testing again - if I have to stay away for the procedure and watch the tumor being handed off to the guy waiting! It cost me $2500.
The peace of mind has no price tag and I am so glad you found a chemo that will kill off the beast!
Otherwise, we take the chemo and cross our fingers. Trust me...I would have taken anything to kill the cancer, and stay on chemo as a suppressive therapy rather than the eanie, meanie, miney, moe approach they use to pick a chemo for us. My old oncologist told me that the differences were pill opposed to IV, finishing in 4 months instead of 6. Gosh, how scientific is that!
Connie
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EWKSeattle
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Posted: Apr 08 2008 at 10:01am |
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I totally agree. Taxanes and Xeloda haven't worked well for me, but other drugs have (Adriamycin, Cisplatin, Navelbine, Avastin). I'm waiting for chemosensitivity results to come back any day now. I'm running out of standard options, and it's worth whatever I might have to pay to avoid unnecessary toxicity from a drug that isn't going to work!
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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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peach
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Posted: Apr 09 2008 at 9:58am |
I wish I had known about this before my lumpectomy, or even the fact I could've had chemo before the lumpectomy. It seems like we're hit with so much in the beginning and being triple negative it just seems like it would make sense to have this offered to us. I would've been willing to pay for the expense just for some peace of mind. I did AC&T and am hoping it keeps the beast away.
Pat
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Netterz
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Posted: Apr 09 2008 at 7:09pm |
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Adriamycin, Cisplatin, did NOTHING, over 6 months of it, and then reacted horribly to taxol, so quit that, so for me, none of the chemo had any effect at all, other than making me horribly sick and bald for almost a year. During that time, it allowed mine to spread, like wild fire. At this point, I am finally nearing the end of 47 rad treatments, and my new ocologist is concerned, that nothing worked before, and wanting to put me on something else, or a clinical trial, after an entire new set of scans. I have to be honest..I am considering not doing any more chemo, until they can come up with something they know has some effect on my cancer. I am wearing down, and out, and just getting too tired to keep taking poisens, to kill off everything, good and bad, just to find out too late its worthless. After watching my dad give up the last 2 years of his life to chemo, so sick he could barely move, instead of enjoying what time he had left, on chemo that had no effect on his cancer at all either. I took care of him 24/7, and I know all too well what he went thru, and what he lost over it. I dont plan on ever checking out the same way he did. have always reacted differently to medicatons, usually does the exact opposite of wat its supposed to. They dont have a grasp on T-negs yet, and after as much searching and researching as I have done, the conclusion is...they really dont have much of a clue on what will battle this type. Each woman responds diferently, like 5000 types, within the sub-types, and genetics, pre-disposition, ovr-all health, etc. We all know our own boies better than anyone else. When I was on chemo..the formor onc kept saying... its smaller, and smaller, heh.... was bigger and had spread alot farther, so she was lying to me the entire time, leading me to beleive things were ok, when in reality, they were not at all. She never even bothered to tell me that there was anther node, outside the sack of 25, to make 26 in all, that was positive as well, and did not have clear margins. We are our own best advocates and warriors when it comes to this, we all have to do the best we can for ourselves, and what we feel is the right thing to do. Hang in there ladies, and do what you feel is right.
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T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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cg---
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Posted: Apr 10 2008 at 3:52am |
Elizabeth,
Have you heard back on your chemoresistance testing yet?
I have been praying you have a chemo identified that will eradicate every rogue cancer cell!
Connie
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EWKSeattle
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Posted: Apr 10 2008 at 6:53am |
No, still waiting. The tests are so new that I'm finding it's a very disorganized process. Trying to get the docs to communicate with the test company, and vice versa, has been the hardest part. Anything out of the routine seems to really confuse them.
I feel lucky we were able to do the testing though. I sure hope they come up with something, since I feel like I've burned through the arsenal. I've done Adriamycin, Cytoxin, Abraxane, Cisplatin, Navelbine, Avastin, Xeloda, Taxotere, Sutent, and Tarceva, and still the buggers keep coming back. I have to wonder if there's anything left! 
The trouble is, I know that what's left is likely to be "off label" uses of drugs approved for other cancers. And my #%&@* insurance is consistently denying them. But that's a whole other story. . .
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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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chicklitzz
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Posted: Apr 10 2008 at 7:08am |
Hi Elizabeth, are you working with Dr. Weisenthal? If you are, I just had them fax me the results when they were in so I didn't have to play the waiting for the doctor to get them game. The results were so that I could understand them, in percentages and such. Maybe that's an option for you. I know that the platinum chemos are suppossed to work really well for the triple negatives, are there any platinums left you can try I wonder?
Don't give up, one of them will most definitely be the magic bullet. If your insurance company wont cover the chemo sensitivity testing I know also that Dr. Weisenthal's office will let you make smaller payments monthly until you can pay it off if you like, that's what I had to do and they were very nice about it. Let us know how it works out, stay strong.
Best,
Michelle
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chicklitzz
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Posted: Apr 10 2008 at 7:17am |
Elizabeth, I heard about a new chemo that came out a few months ago that was just approved for bc, have you heard of this one yet?
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EWKSeattle
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Posted: Apr 10 2008 at 8:56am |
Yep, Ixempra is one of the drugs they will be testing. Let's hope!
My test is being done by a company in Pittsburgh called Precision Therapeutics. I'm about to call them for a status report. I'll keep you posted!
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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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Vasil
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Posted: Apr 10 2008 at 9:10am |
Nearly the exact same thing happened to my wife. I will guess that platinum based chemo will eventually become standard of care for TNBC, as opposed to ACT. Unfortunately, the chemosensitivity tests aren't widely accepted. However the small scale randomized trials do show some predictive power both for resistance and sensitivity. We shepherded the tissue to the lab post surgery and followed up with the lab to get the results...its just not commonly done so need to be proactive.
VS
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cg---
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Posted: Apr 10 2008 at 9:56am |
Dear Elizabeth,
They have an arsenal of chemo agents...and not only do they test the "current protocol chemo" - they also try old ones that have been around for a long time and are still found to be effective and much cheaper than drugs like Avastin/Abraxane, etc.
Hoping you will have your answer soon.
Connie
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trip2
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Posted: Apr 10 2008 at 10:07am |
Hi Vasil and welcome to our forum.
We appreciate you sharing this information.
How is your wife doing?
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Stage 2 2003
Stage 1 2007
BRCA 1+
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trip2
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Posted: Apr 10 2008 at 10:11am |
Elizabeth, I'm so sorry you are having to wait so long.
If the test shows that you need something that is "off label" wouldn't the
Onc be able to make a case on the situation so that insurance would approve? How are people getting this done I wonder?
Good luck 
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Stage 2 2003
Stage 1 2007
BRCA 1+
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EWKSeattle
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Posted: Apr 10 2008 at 10:31am |
Thanks, Pam. While I'd like to see the results, I can't claim it's urgent at the moment.
I had the mets nodes and right breast removed on March 10, and then last week I started 8 weeks of radiation + Cisplatin. It's the same regimen that I had on the left (original) side a year ago. And we think that worked really well in terms of local control. I've had no sign of disease on the left since then, even though there had been extensive disease in those nodes. So the HOPE is that this regimen will work just as well on the opposite side.
And the ultimate hope (though it's a huge stretch) is that the disease has only ever spread through the lymphatics (not blood), has never left the loco-regional area, and maybe never will.
The chemosensitivity test will tell us what drugs might be effective post rads. (I'll do 3 months of something after this regimen.) And what will work when and if the cancer pops up somewhere again after that.
As for the "off label", it's a mystery. I tend to get easier approvals for infused drugs, but not for oral chemos. Which makes zero sense, since the infusions cost them 5x as much on average. But I guess it's two different departments within the insurance company. The pill people are the scrooges. In the end, I have won the appeals, but not without expending a lot of time and energy (as if I have any to spare!). I tell myself I'm performing a public service, so that maybe the next gal will get approved without the hassle. 
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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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cg---
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Posted: Apr 10 2008 at 10:48am |
Dear Elizabeth,
I have been following a new drug called Yondelis.....apparently Johnson&Johnson has paired with Pharmamar and there are phase II trials out there now. It causes apoptosis and it is made from marine life! It is apparently showing results on tumors that have failed to be eliminated by taxane treatment and tumors resistant to other chemos.
Connie
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trip2
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Posted: Apr 10 2008 at 10:48am |
Well how odd the insurance companies are more agreeable for the more expensive method of treatment. What they are supposed to be doing is giving you the medicine that will make you well regardless of if it goes in your port or in your mouth. Grr, gets me going.
Keep us updated,
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Stage 2 2003
Stage 1 2007
BRCA 1+
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EWKSeattle
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Posted: Apr 10 2008 at 10:53am |
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Thanks, ladies. I'll keep you posted. And thanks for the tip on Yondelis, Connie. I'll see if it can be added to the list of drugs they will test!
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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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Vasil
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Posted: Apr 10 2008 at 11:56am |
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Thanks for asking. She feels but has had a local recurrence and possible small lung mets. Will start more treatment soon.
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rosamundejane
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Posted: Apr 11 2008 at 1:41am |
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I'm surprised that anyone thinks that chemotherapy always works. It more often than not doesn't. In primary breast cancer having chmeotherapy may increase chances of the cancer never coming back by some percentage points...5%, 10%, maybe 20%...depending on the pathology of the tumour
With recurrent/metastatic cancer chemotherapy may bring about some progression free time, which may affect overall survival time..or not...but eventually the cancer cells mutate and cancer spreads/grows again. Different chemotherapies work in different ways, and may give extra time but chemtherapy is by no means a cure for cancer.
Jane
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