a couple of random questions

Joy · 01-07-2009, 12:14 PM

My busy little brain is always generating those and I know there aren't always answers, but I am asking anyway. When drugs cause pain at the tumor site, is that a sign that they are working or is it inconsequential? And my other question is if a drug doesn't work at one point is it ever worth trying again? My reason for asking is that it really, really bothers me that I had progression on the DM1 trial when so many have responded so very well. Will it never work for me? Why didn't it work? I mean, what up? That surprised every medical person I was involved with in the trial. I know there may not be reasons that we know, I would just be curious to hear any theories anyone has. Thank you so much.

Rich66 · 01-07-2009, 12:45 PM

Joy,
I don't know anything about the pain vs efficacy equaion. Hopefully you are reporting this pain to your onc.
But I am painfully aware of the percentages of things working. I just posted that DM1 update in the articles section and although the percentages for success are "promising", they make no promises. Has SIR spheres been considered? Can you take fulvestrant again now that you are off chemo? Or has the ooph removed any traces of estrogen? Regarding resensitization, there seems to be discussion about low dose estrogen for a brief period to do just that for hormonal treatment. Also, I seem to have heard of some method to resensitize to Taxol but not sure if it is available. You also might be a candidate for Rexin-G. What is your onc saying? Maybe time to get some more opinions?

Bill · 01-07-2009, 01:54 PM

Hi Joy! All I can add here is that when Nikki was first dx'ed with liver mets, they started her off with Taxol/Herceptin/Lapatinib and at that time she would tell me, her oncs. and nurses that she felt a different kind of pain in her liver area and that she knew the chemo. was working. This combo. did work for 15 months before progression. When we tried other treatments after that, she was worried because she never felt that particular "pain" again, and those other treatments were not as effective. This is my only experience with this matter, and sure, it's totally anecdotal, but since you asked, I thought I'd bring it up. You hang in there, Little Sis!

chrisy · 01-07-2009, 03:39 PM

Hi Joy,

Great questions, I think we all ask those questions all the time.

I'm no expert of course, but on the "causes pain at tumor site", that is a reported S/E in the Herceptin literature; there may be some resource somewhere that lists all the possible side effects and the drugs that cause them...but I'm not sure that would be good information to have!

In my personal experience, I had T/C/H and it worked on extensive liver mets then maintained NED on H alone, never with any pain. The only time I have had pain was after my first DM1 infusion, and it was a mother of a pain but short lived. And the DM1 worked. My personal belief was that the pain with DM1 indicated it was pissing off the cancer - and I'm sticking to it. But my experience with other agents was no pain, so I don't see a direct correlation.

I think there is limited (if any) actual study of these correlations for the most part. There are so many complexities - is that side effect just one more complexity that may or may not have significance?

Your other question is also really interesting - and I'll bet somebody is, at least indirectly, researching that area.

There is a lot of emerging knowledge and research into the mechanisms that cause drugs to work, or not, or develop resistance. There is also interesting data on how resistance can be reversed, how various pathways can be activated/deactivated/reactivated... So although I don't think the answer is known yet, as the understanding of the basic biology advances this may reveal how we can improve/change the response to a particular drug.

Still way too much remains unknown - but I'm grateful that people who actually have a chance of understanding it are also asking these questions!

Joy · 01-07-2009, 04:54 PM

Thank you for the responses! I haven't been having a lot of pain, which I should've mentioned. Yesterday after weekly H, I had a smidge and then after checking the boards here, I started thinking about that. See, I question if H really still works and my doc keeps me on it again since the data shows there is still some benefit, which is fine with me really. I just got a little hopeful that the twinge I was feeling was maybe some efficacy (rather than the 17 pounds of dinner I ate last night)

And just to clarify some of my options, because I am always getting great advice here I should mention a couple of factors that may spark anyone's knowledge on these specifics-I really would love the feedback.

I am currently on Epi/Cyto/H/Z (2 rounds so far). This is after achieving stability with Gem/Carb, but my doc wanted better than stable as, and this is what scares the heck outta me, the last CT report indicated "stable, but extensive liver disease" in addition to high Alk Phos and High CA27.29. She did not want to lose a window of opportunity with stable disease that may get jiggy fast (which is what happened on TDM1 and why I had to quit-this was prior to Gem/Carb). So she wanted to pull out the old strong chemos, hence the E/C and it has been 8 years since I did A/C. And like I mentioned, I don't know if it is working or not, yet.

Prior to all this nonsese I had started H/faslodex following my ooph in May. I had had good response to AI's in the past (using zolodex for menopause) and we thought maybe this would work, but there was some creeping progression and the DM1 trial opened up so we switched. I would love to think that some dayI could do Fasl/H again. I only had the first couple of injections.

Radiologic interventions are always on my radar. I was told by a rad guy that I had 1 too many and a couple of too big lesions for RFA. The other discussion was SIR, but because of past lesions that have come and gone there is some cirrhotic tissue in the liver (any experience with this would be so appreciated btw) and the concern was damaging any good tissue i.e. maintaining reserve with a procedure like SIR. Cyberknife would be sort of a dream come true (used to be a house in Mexico, but...well, you know), but I don't think I am a candidate at this time. Again any knowledge of this would rock my world as I have had a hard time finding what parameters are needed prior to procedure.

Sooo here are some other thoughts in addition to my original post (to which I still welcome your feedback):

-Why can't they design a chemo to remove unwanted hair and preserve the wanted hair?

-I will be inquiring about the Her2serum test at my next visit.

-Besides living a clean life, how do I preserve the liver?

-Am I or could I ever be a cyberknife babe?

-Would SIR really cause that much damage?

-Is it possible to go from triple positive to triple negative, I mean really? Can all 3 switch? I know individually that has been assessed between primary and mets, etc. and we find that it can, but wow.

-I so wish a vaccine trial would come out kickin' hard for stage IV people (again another dream come true, replacing the one of a date with Eddie Vedder-although since I met Luca, I broke up with Eddie-he is handling it well).

And I have a bazillion other thoughts, but I will stop there as the children are starting to make each other crazy and are not getting out their homework as asked. So I switch gears from cancer researcher/pain in the a*# to the one who must know all in the subjects of math, geography, whale breeding grounds, atoms, 6 times tables, French, etc. Oh, and I guess dinner should factor in there as those people appreciate it when I feed them

THANK YOU, THANK YOU-i really love you guys!!!!!!!!!!!!!!

caya · 01-07-2009, 07:02 PM

Joy,

I don't have any answers to your questions, just wanted to chime in with some support for you, dear brave girl.

Your happy smiling face is always a welcome sight, I hope that you will have postive results soon. You really are a wonder woman!!

all the best
caya

karenann · 01-07-2009, 07:07 PM

Joy,

I don't know if the following link will be helpful to you or not, but it does look interesting. My husband put something on my email page that alerts me to breast cancer news and this information came up today:

www.medicalnewstoday.com/articles/134592.php

Karen

karenann · 01-10-2009, 10:17 AM

Bumping this up for Joy. There is a lot of buzz on several of the boards regarding this vaccine trial.

Karen

StephN · 01-10-2009, 02:31 PM

This vaccine trial in Karenann's link appears to be for those in early stage disease, not for metastatic stage IV disease.

That was Joy's question: Will a treatment come out in vaccine form for metsters?

I know that at least one of the HER2 vaccine trials here at the University of Washington will accept stage IV patients if they are in remission, stable or have no measurable disease. Have to check that with the trial admin with this one.

Keep those questions in mind, Joy, but use that energy inward to fight with.

karenann · 01-10-2009, 04:56 PM

Oh dear, maybe I didn't read the article correctly. I thought the trial was for women with mets because it mentions that the first phase of the trial will involve women who have bc that is actively spreading and women who had a recurrence after remission.

Sorry for the mistake.

Karen

StephN · 01-10-2009, 07:23 PM

Right you are Karen.

I read the top part to see how it worked and what the target was (peptide type), then skimmed to the end where they say the second phase is for women in remission and at risk for recurrence.

But it seems to be only offered in one location (like our U of W trials), and would require travel.

Check it out, Joy!

Midwest Alice · 01-10-2009, 08:07 PM

In Dec. I was turned down for the U of W vaccine trial Stephn mentioned. I believe they have 2 or 3 others shorter vaccine trials where they want to track active cancer. From what I remember you only have to travel to u of W maybe four times.

Here is their contact information. Nicole is really nice, Nicole Bates" <nbates@u.washington.edu>

I was turned down because my Muga was 48 and the lowest they will take is 50.

Hope this is helpful. Hang in there.

Midwest Alice · 01-10-2009, 08:15 PM

More u of w contact information:
Nicole's phone number is 206-543-6620
tumor groups web is www.tumorvaccinegroup.org

Midwest Alice · 01-10-2009, 08:17 PM

In Dec. I was turned down for the U of W vaccine trial Stephn mentioned. I believe they have 2 or 3 others shorter vaccine trials where they want to track active cancer. From what I remember you only have to travel to u of W maybe four times.

Here is their contact information. Nicole is really nice, Nicole Bates" <nbates@u.washington.edu>

I was turned down because my Muga was 48 and the lowest they will take is 50.

Hope this is helpful. Hang in there.

Sherryg683 · 01-10-2009, 08:25 PM

Joy, why would you not be a candidate for cyberknife. I'm not totally familiar with it but we have the cyberknife in New Orleans and it advertises on their website that it can be used on the liver. I am also curious as to what determines whether they will or will not use it. As far as vaccines, I was accepted into a vaccine at U of W trial as a stage IV right after I finished treatment 2-1/2 years ago.. If I am remembering right, I had to be in remission or no measurable disease like Steph said and I had to fit into a time frame since my last chemo (herceptin not included). I don't remember the exact time but I am thinking 9 months. I remember talking to the woman at U of W on the phone and she said that I qualified by 1 month, a month later and I wouldn't have. I had all the paper work but then decided against doing it. Washington is so far for me to get to and I was doing well and was just nervous about it. As far as your pain question, my oncologist has told me that he has had many women tell them that they knew that there tumors were shrinking because they could feel pain in that area. He didn't say this was true or not, just what they had said. I had and still have this awful burning, stabbing pain in my gallbladder area since chemo and have had every test and scan to check it out and there is nothing, so I don't know if pain is an indicator. I just remember my brother before he passed from melanoma, his whole liver was full of cancer and he said he never felt much pain there at all, so I think the pain may be an individual thing. I do hope you find some answers and if you do please share them with us. You are such a beautiful, shinning light and we need you around here with us for a long, long time..sherryg683