scan results & new treatment update

[Pam P]

Here are the new test results:
-tumor markers - ca2729 now up to 1500 (up 100 points since last month)
-pet/ct - shows "slight" progression in bone mets - more places & larger SUV ratings than last scan in Oct.

My oncologist says he thinks the progression is slight yet it's still slow progression over the last few months since I've been on the navelbine/herceptin/zometa which I started 11/09.

He checked current trials in my area but I don't qualify for any.

I am starting on herceptin/tykerb as of today. I had tykerb before along with xeloda. I don't have much hope for this combo. It doesn't include a big gun chemo. No one on this site has had good results with it - seems to have failed after just a short time. But my onc. wants me to do it for 2 months & see what happens. Okay, then what?

I'm very discouraged; I've burned through lots of drugs this last year and none have stopped progression - even slight. I'm tired and scared and feel like there's nothing available that is going to put a halt to this damn disease.

[Ellie F]

Hi Pam
So sorry you are having this big struggle to find a treatment that will be effective. It is such a downer that there is no T-DM1 trial at present. The positive part is that if you can keep this beast under control for the next few months the FDA will probably approve it then you will be able to access it without all this hassle.
I understand your worries that herceptin/tykerb may not do the job but I have recently heard that for some women it has kept them stable for 3 or more years and it feels like a lottery knowing what will work for who.
Praying hard for good results for you
Love Ellie

[schoonder]

"keep this beast under control for the next few months the FDA will probably approve it"

Ellie F,
I'm not aware if Roche as yet has even applied for T-DM1 FDA approval.
They're very actively evaluating this drug, lots of data from two phase 2 trials in 3L MBC have been accumulated, also a worldwide 2L MBC phase 3 trial has been ongoing for well over a year, a number of combination trials as well as a headon phase 2 trial in 1L MBC setting vice herceptin with taxotere is presently being conducted.
However, while by now quite some time into this drug's evaluation, very little information has been published about real possibilities for compassionate use or early approval and if these options are indeed considered, the earliest date this could take effect.

[michka]

Dear Pam. I was waiting for your post hoping it would be more positive. I hope Tykerb/Herceptin will work for you. I understand you want to put more bullets in your gun. Are you taking anything else with T/H? Faslodex or equivalent? Are you continuing Zometa or equivalent? Don't be discouraged. You are a brave fighter. Keep trying combinations and you may either find one that works or one that will bring you to T-DM1. I hope you will get valuable opinions from some of the "experts" of our group. Hugs. Michka

[Barbara H.]

Hi Pam,
This combo can work. Two weeks ago my CEA was less than .05% which means that it can't even be detected. Even T-DM1 didn't bring my CEA range that low. I'm hoping that you will also receive some benefit from these two drugs. If anything, I find them very tolerable.
Best,
Barbara H.

[tricia keegan]

Pam, this may be the one to surprise you so keep an open mind.
Wishing the best for you and sending hugs. xx

Tricia

[Chelee]

Pam, Wish I had more time but right now...but I have to run...MIL is very ill.

But I wanted to share with you that when I went out to see Dr. Slamon as you know he wanted me on TDM1. But with my HMO it was impossible. His 2nd choice was Tykerb/Herceptin. He explained how it worked, and told me about the great results they have gotten from it. I was told for me personally...since I was "so Her2" pos...he knew for sure it would work for me.

After seeing Dr. Slamon I had two other 2nd opinions. As you know I was told by the other two onc's that that combo would not work because it didn't have a chemo added. That concerned me so I called Dr. Slamon's office and talked to his NP that works with him. She told me (again) quite matter of FACT that Tykerb/Herceptin DOES work--and works well. So after hearing that I started doing major searches about Tykerb/Herceptin. It took a while but there are LOTS of woman that had great results with this combo.

In fact Vcarr on this board was in a trial before her surgery--this combo made her tumor completely disappear. As we know we are all different...so what works for one might not for another...but I just wanted to tell you what I heard straight from Dr. Slamon's office...let alone all the woman I found that this combo worked great on. I will have to search my folders...I seriously found lots of woman that did great on this. If this does work long enough for you then TDM1 might finally be available for you.

Chelee

[Jackie07]

Pam,

I am a strong believer of the power of 'endorphen' - our natural immune booster. Tired and discouraged as you may be, please try to stay active and be positive as it increases the releases of endorphen which reduces pain and increases disease-fighting capability of our body.

Are you given adequate meds for pain control? I'm sending warm thoughts your way...

[Midwest Alice]

Hi Pam, I second Chelee, This Tykerb/Herception is a good treatment and you have not taken this team.

I am so sorry your fight right now is so hard. Praying for you and this treatment and good results.
Love Alice

[Rich66]

Why not pull the ER+ side (http://her2support.org/vbulletin/showthread.php?t=42381&highlight=issues) back into your toolbox? There is plenty to support either alternating between her2 and ER therapies or blockading (http://her2support.org/vbulletin/showthread.php?t=38998) both simultaneously.


Tykerb/Femara has just been approved...could give nice results without "big guns";)

The Zometa might be better if given weekly (http://her2support.org/vbulletin/showthread.php?t=39563):

There are methods to quell chemo resistance
(http://her2support.org/vbulletin/showthread.php?t=43657)
There are methods to reverse endocrine resistance (http://her2support.org/vbulletin/showthread.php?t=40481&highlight=endocrine)

Maybe your onc would consider including Metformin (http://her2support.org/vbulletin/showthread.php?t=39740)

If you have an easy biopsy site, GD Pawel would want me to remind you about Chemosensitivity testing (http://her2support.org/vbulletin/showthread.php?p=222355#post222355) to find out what your tumor's achilles heel is.

How's your Vitamin D (http://her2support.org/vbulletin/showthread.php?t=41852) level?

How about supplements? Take a page out of Steph N's story and get some milk thistle (http://her2support.org/vbulletin/showthread.php?p=218176#post218176).

Options, options, options...

[Pam P]

Thank you to all of you for your encouraging words and for your reports of successes with the herceptin/tykerb combo. Just maybe it will keep me stable or better yet decrease these mets.

Rich: regarding your questions, ideas:

My vit D level is very high and I do take supplements too

I haven't read/ thought much about milk thistle. I don't tend to take lots of that kind of thing as I feel inadequate in selecting the best and safe supplements without emptying the pharmacy shelves because they all "sound" good. And taking too much of the wrong things would be harmful I think. I will check out Steph's expertise on it & maybe give it a try,

My mets are in the bones so I don't think any bones are an easy biopsy site.

I will ask my onc. about possibly adding femara or another AI to this herceptin/tykerb. I've asked before but he hasn't wanted to add a AI to a chemo combo. He believes they sort of 'fight each other' when used together in the way they work. Yesterday when he was looking at possible trials he was looking at one wih femara, but since I'd had it before and maybe for other reasons too Ididn't quality.

[Pam P]

more.... I hit the send button my mistake.

femara.... I didn't qualify for that trial my onc. was looking at and I really don't know any other aspects of the trial & didn't care at that point since it couldn't apply to me. Knowing my doc he will say he wants to see how I do on just the herceptin/tykerb alone now for 2 months or so and adding in another agent is always possible if needed later.

The metformin sounds promising, but still only available in trial from what I could see & couldn't be used with other concurrent treatments.

Thank you for these ideas, Rich, I always appreciate your big lens of treatment studies and options.

I took my 1st dose of tykerb yesterday. This time he's dosing 1000 mg/day. The last time I was on it I did 1250/day, but I see thru trials etc. they now say 1000 is good for efficacy. When I stopped taking tykerb a couple of years ago I had just gotten a new month supply. I couldn't bring myself to throw them out because they're so expensive. I always tried to find someone who was needing them to give them to. Now the bottle says they expired 5/2009 - 10 months ago. But my onc. said go ahead & take them until I can get the new scrpt processed & sent to me. It takes about a week. I might also ask the pharmacy if they are still good and just use them up.I know they're good beyond the date on the bottle, but how long? Of course if they've potency I won't take them after I get the new ones.

I have another non cancer medical issue going on too. For the past year I've had more colds that have turned into sinus infections and have affected my vision in at least one eye. I finally got to go the an ENT a couple of weeks ago. I took 2 weeks of antibiotics. Then had a ct scan of sinuses the same day as my pet/ct. I got the sinus ct report yesterday, but with all the cancer stuff didn't have time to ask my onc. about it. I see the ENT on Monday so will have to wait for his interpretation then. There's a lot going on in all my sinus areas except for the frontal ones are clean. It talks about mucosal thickening in many areas and "debris" (what the heck is that?) in the dependant portion of the maxillary sinus. I'm getting pretty good about interpreting scans regarding my mets, but I don't have a clue what any of this means. I hope it doesn't mean surgery. People I've taked to have said the endoscopy surgery on nasal/sinus is very painful and often doesn't do any good. Just one more thing to attend to right now, but i need to get it resolved. These infections are making me feel so miserable.

As Gilda Radner would say, "It's always something."

[Mary Anne in TX]

Hi Pam! I'm gonna believe that the H and T will work great for you! But, I am praying for you to have a massive "I can do this" attack! I know that when I don't feel good, the hills feel like mountains and hope is weak! Who makes you feel good. Make some time to hang out with whoever makes you feel good about you and get that ol' body of yours nurtured. You're one very terrific gal and we're all cheering for you and believing in your victory. Take really great care of you! Much love, ma

[Rich66]

There are too many documented instances and trials (http://her2support.org/vbulletin/showthread.php?t=43403) of chemo + hormonal synergy to be hanging on to that notion. In any case, Herceptin and Tykerb aren't chemos in the sense of relying on fast replicating cells. They are targeted and will target whether femara or Faslodex is messing with the cells or not. It's like shooting an arrow while cutting off the supply lines.
Metformin can be prescribed by your oncologist as off label...it's an old, generic, cheap, low side effect generic drug for diabetes...no trial..Walgreens.
A naturopathic doctor with oncological awareness could guide you through options. But I can tell you there is so much good about green tea supplements that I can't imagine you could go wrong. Never saw anything bad about it. But the milky thistle still seems very worthwhile. Pass those links to your onc or staff so you're not quoting something you "saw on the web..". If they're not interested..well.....

[Shobha]

Dear Pam,

Just wanted to add my prayers and good wishes for you. Wishing you good results with T+H combo and some much needed relief!

hugs,
shobha

[juanita]

crossing my fingers for you that you find the right combination!

[Pam P]

Rich, I will bring the femara/fasodex, metformin, and milk thistle questions to my onc. next week. Green tea supplements too. I don't like green tea enough to think that I'd get enough in my system just by drinking it. It kind of makes me a little nauseated sometimes when I drive it. Thanks.

[chrisy]

Hi Pam,
Well, slow progression is better than rapid progression? Sorry, I know it's hard to see silver linings...

Tykerb+Herceptin can work well even for those such as yourself who have had a lot of prior treatments. There was this study reported at SABCS last December (this is not a link to the abstract, just an article about it)

http://professional.cancerconsultants.com/conference_main.aspx?id=42119

It might also be a good move from the standpoint of giving you a break; give your body some time to recover it's own strength. You've been under continuous assault for quite a while.

Rich's comments re adding a hormonal component may be valid. From my understanding the anti her2 and anti er agents don't so much work against each other, it's more that blocking ONE may activate the other pathway.

So a lot of her2 therapy may reactivate the ER pathway and vice versa. This is not necessarily a bad thing as long as you are blocking both. In fact, some of the research is purposely trying to use anti her2 agents to reverse tamoxifen resistance.

At any rate, there was a lot of excitement over the Tykerb/Herceptin study at SABCS; this could be a really good option for you. Remember, more toxicity does not necessarily lead to better efficacy.

[chrisy]

Hi again,
I also wanted to respond on the sinus issue. I seem to have had sinus congestion "always" while on Herceptin. For over a year, it began to be mentioned on scan reports (I don't remember exactly what they called it - but it was similarly described and interpreted as non cancerous, but crud nontheless). Last year it resolved.

So, you may be able to just treat the sinus infection, but ask the ENT if something can be done (is there such a thing as crud-ectomy???) to reduce the risk of having continued issues.

[Becky]

I triple the Femara or Faslodex idea. You have absolutely nothing to lose by blocking ER at the same time as blocking Her2.

Fight for it!

[Pam P]

Thanks Chrisy & Becky for more support on adding the femara. It's on my list to ask about next week.

Here's my understanding of what my onc disagreed with about treating with AI and chemo simultaneously. It doesn't apply to using AI with femara, faslodex, but with cytotoxic drugs such as navelbine, taxanes, etc. He says the AI s slow down the activity of the cells at least hormonally and maybe as a result in how fast they grow/divide. Cytotoxic drugs kill fast dividing cells so you want the cells to be fast dividing for the cytoxins to kill them rather than be slowed down by the ai and not as affected by the toxins. At least that's how I remember him explaining it to me, but that was many months ago and I mayhave it mixed up.

I'm trying to get myself in a more positive place. I agree with those who have said it's important to do. I'll get there i hope. Part of my issue other than bein bummed by the scan reports & sinus issues is that this week my hips & tops of my thighs have been so painful that I ache all over and feel like I'm having a hard time standing, sitting, walking, etc. This is new. Maybe it's muscle weakness from laying around so much with the sinus sickness. I'll give it the 2 week rule and report it if it doesn't improve soon. Wow, thanks for listening to my long list of woes. Pam
P.S. this eternal winter, snow, cold, ice isn't helping - spring can't come soon enough!!!

[Rich66]

It doesn't apply to using AI with femara, faslodexNot sure what you mean. Femara and Faslodex are AI, Aromatase inhibitors.
But yes..the theoretical argument has been the same for proliferation targeting trugs as well as radiation: Don't combine with anything that slows the cells down.
In both cases the theory is being disproven. I put the support for chemo-endocrine here (http://her2support.org/vbulletin/showthread.php?t=43403) so it can be shared with oncs.

In the case of Her2 + Er targeting agents, there shouldn't even be a theoretical concern at this point. Recent Tykerb/Femara approval is case in point.

I get the sense that curriculums get pretty solidified and comfortable in clinical practice. It can't be easy for oncs to change the way they do things. Docs of all kinds seem to have strong training or inclination to never appear "wrong". There was an example on this board recently of an onc wanting to proceed with metronomic therapy but was afraid what clinical peers would think. That speaks to a strange professional pressure when the doc confides in a patient this way. It must be hard trying to appear informed and scientific when the science involved is so unpredictable. But patients have the larger right to all the tools at their disposal...even if it means changing the "rules" along the way. It's not being wrong. It's just part of the seemingly endless struggle to get it right.

[Pam P]

Rich - I typed that wrong. I meant to say "it doesn't apply to using ai with herceptin / tykerb". Sorry. Glad there's new research supporting more options. The stance you describe of docs supporting their old theories despite evidence to the contrary I don't believe applies to my onc., thankfully. However, he is more apt to site proven protocols. But he is very willing to listen to my questions and requests and consider these options.

[Rich66]

That's good. Because the chemo-endocrine thread just got a little longer.;) femara + various chemos + Avastin.

[Jackie07]

Pam,

Found a link talking about cleaning the 'debris' in the sinus:

http://www.arizonasinus.com/endoscopic-sinus-views-sphenoidotomty-mucous-removal.htm

Looks like an easy procedure to clean up the thickened mucous.

[Pam P]

Thanks, Jackie, for that link. Very informative. I sure hope I don't need to do that surgery though. I'm hoping some non surgery meds might clear it up first. Monday I'll see the ENT. Thanks again.

[Joan M]

Pam,

Thinking about you and hoping one of these combos will work to knock down the markers and mets.

Joan

[mmoons]

Pam-

I wish I am sending you lots of love and prayers. You have so much going on and I can only imagine how overwhelming it must be. Please feel all the love and support coming your way. This combo will be the one to get your back to NED.

Hugs,
Maureen