Sunday, June 17, 2012

Houston, I'm ready for takeoff

What have I been doing instead of blogging these past weeks? How about hours filling out paperwork, driving to doctor appointments and taping hours of conversations with oncologists and others in the hopes of finding which avenue to pursue in my war with my tumor.

To update you on my progress thus far, I'm going to give a short synopsis of what each person has had to say. Before that though, a huge shout-out to my mom who has spent several nights transcribing my taped consults into Word documents so I could refer to them later.
All that training as a newspaper reporter was not in vain. All of this as she also holds down the fort sharing her breakfast with our two seagulls (MINE?! MINE?! MINE?!--does nobody remember Finding Nemo?)
Honestly, you'd think we never feed them.

To doing a little mending on some blankets...
So, back to the transcription. My first meetings at Northwestern were not taped but I already gave you the gist of those meetings in this post and in this post.

Tuesday I went to The Block Center for Integrative Cancer Care. I met with a counselor first who covered my mental state. Next I had labs where 17 vials of blood were drawn. I will get the results of those tests in 2 weeks. Here's what they tested for:

Coenzyme Q10, total
Fibrinogen Antigen
Folate (Folic Acid), Serum
C-Reactive Protein, Cardiac
Insulin and C-Peptide, Serum
Leptin, Serum
MMP-9 (Matrix Metalloprot.-9)
Vit B12, B6, C, A, E
Raji Cell, Quantitative
Zinc, Plasma or Serum
Prothrombin Fragment 1+2 MoAb
Interleukin-6, Serum
Activated NK/IL-2R Short
Vit. D, 25-Hydroxy

My CBC and CMP results already came back normal. My glucose was elevated but since I had just had lunch that was to be expected. I will probably need to have a fasting test done later.

Next up was the nutritionist. She spent over an hour with me discussing my current eating habits, etc. and then we talked about the role nutrition plays with cancer. Some things of note: 

It helps to look at foods as: is it benefiting me or does it have consequences? So if you’re eating something like a white pasta, it’s devoid of nutrients. It has no fiber, no fatty acids, no minerals the whole grain things have. Also, because the fiber and fatty acids have been taken out, it’s digested much more quickly, and so your blood sugar spikes much more quickly, which is hard on the liver, and the liver starts to put out IGF-1 – that’s a growth hormone that cancer cells feed off of. It also causes your insulin to spike and stay for a longer period of time. So as the blood glucose level goes up, insulin goes up – which also sends growth signals to your adipose tissue, to growing cells that are growing more rapidly than they should be – out of control or unregulated, etc. So we’re trying to rein all that back in. But what that also means is that your liver is protected for longer amounts of time. So is your pancreas, thereby lessening your risk of type 2 diabetes

We like whey protein. In dairy products, there are two proteins. 87% is casein protein, the other 13% is whey protein. The casein protein is what stimulates tumor growth and rapid cellular reproduction in laboratory animals. It also can increase your IGF-1, and that’s the hormone made in the liver that a lot of doctors call “Miracle Grow for cancer.” It’s a good way to look at it. So the whey protein, as long as it’s a micro-filtrated product that isn’t sweetened with evaporated cane juice or any unapproved sugars, we’re absolutely fine with. 

Our diet that we recommend is very low in fat. That has a lot to do with research on estrogen sensitive cancers and testosterone – well hormone cancers of prostate and breast – which as an optimal health clinic, I feel is relevant to all my patients. Because we’re looking at getting you through everything, and then as long as possible into the future without having to return to the clinic.

Then we discussed all the supplements they are recommending to start until my labs come in and they can narrow it down. Some supplements of note:

Curcumin is kind of the all-star right now in the cancer world. It’s a phyto-chemical found in the root turmeric - taken out of the root and concentrated into a supplement form. It literally cuts off growth pathways of cancer. It’s anti-inflammatory, and takes away a lot of toxicities with it. So whether or not it actually acts on reducing growth potential of what’s going on, I think it’s worth a shot. 

I’m going to add our supplements that naturally reduce estrogen in the body, but not so much to send you into menopause. It just helps so when your body is recycling estrogen – we almost have too much on board – we have to reduce how much of that enzyme is recycling in the bile.

Calcium D-Glucarate is a phyto-chemical which is metabolized out from cruciferous vegetables. That can help to change your estrogen receptor from pro-cancerous to non-cancerous estrogen. It helps change it to that very healthy estrogen that won’t play into the receptor. 

IF you do the surgery, whatever treatment becomes clear, email me – definitely – because we may want to play around with your supplements. We also do pre- and post-surgical protocol FOR stickiness. It’s designed around the theory of the micro-metastases being released or left behind. I know it’s not a metastasizing cancer, but it has to do with the “stickiness” of particles being left behind.

Nutri-Essentials is a multi-vitamin without iron and without copper. The Vitamin A is all food-based, it’s not retinol, it’s not chemical based. And there’s moderate amounts of B-1 and B-2. All of those have a lot to do with how fast the reproduction occurs. Iron – we never supplement unless there’s a proven deficiency because it can be incredibly oxidative if you have too much iron in your blood. And copper participates in cancer cell growth, so we just take that out of supplementation entirely.  

Turbo Greens is a green powder maybe a lot like yours, except it’s mostly cruciferous vegetables, so for the case of an estrogen sensitive cell or tumor, a heavy cruciferous vegetable powder is a great idea, because is kind of the anti-estrogen veggies. They’re the ones that have because they regulate what type of estrogens are going to come to the cell. They’re the ones that have endocarbonal, which turns into DIM, which regulates which type of estrogen receptors are going to come to the site. 

My last question was about soy which has made news as a source of cancer because of it's high estrogen content. Here's what she had to say:

When we eat mammalian estrogen, like beef, pork, chicken - and we do get mammalian estrogen from our foods. Milk definitely, because it’s packed with growth hormones to make the baby calf a big cow. That has an effect on our own estrogen. Then if we eat a phyto-estrogen, that has maybe 1/25th of the effect of our own estrogen. So then we eat the phyto-estrogen and have our own estrogen that we’ve made, going around in our body.

There’s one estrogen receptor for that cancer cell. Which one do you want to land there – YOUR estrogen, or a phyto-estrogen? YOUR estrogen’s going to have a great impact on its growth. Phyto-estrogen’s going to have 1/25th impact on the growth cell. So the cell is going to grow significantly slower. So it’s actually blocking YOUR estrogen from feeding the cancer, which is more powerful....but if you’re eating severely processed soy like soy oil, in that case… You don’t want such severely refined foods, but tempe, miso, tofu are absolutely fine. 

Next up was Dr. Block. He started right off saying that MD Anderson and Dr. Pollock was the place for me to be to really address the specifics of this tumor. He has only seen similar tumors but has no direct experience with my rather unique cancer. That said, he did discuss ways in which his center can help "support" me if I do undergo other therapies. We discussed sleep, nutrition, stress management, relaxation training, breath, meditation and exercise. Some things of note: 

...what we do and how we care for ourselves and NOT care for ourselves influences and impact us in ways that stimulate growth. And so there are things that we can do that can kind of quiet growth, we believe, that can be very substantial in, at the very minimum, slow the process down in ways that can have enormous therapeutic benefit. 

For your family, the dietary suggestions make sense for everybody. We know that a diet of red meats and poultry dairy products are going to increase inflammatory cascades, oxidative cascades, angiogenesis, microscopic cancers as they start to grow, tumors. In addition to that, we know that the pro-inflammatory drive from these things have health consequences, regardless  - arthritis development, cardiac risks, cancer risks. So it’s really a good idea to kind of shift your diet toward a more vegetarian diet. And fish is fine. Egg whites are fine. Whey protein is fine, if you want to do shakes with that.
The soup that these cells reside in and depend on to grow is modifiable by how you take care of yourself. By natural products, by food, etc. Some of that chemistry is caused by you, how you care for yourself and your body, your unique genetics. And some of that chemistry is caused by the cells’ discrete chemistry. But in your case, I think it’s your own environment that’s responsible for what’s going on. So right now, this is pro-inflammatory. So you’re creating a sort of pro-inflammatory chemistry that supports the cells. So the more we can get a fingerprint on your chemistries – and that’s what we do with this fancy lab-testing – and your nutritional labs and your oxidative markers, your glycemic levels, we can tailor a regimen specifically to you. Which makes it much easier – we can literally say “you’re high here, we’ll give you this, and do that” and check back to see if we’ve corrected the disruptions in that soup. And the less disruptive that soup is, the better you’re going to do.

So that’s kind of part two of this bio-chemical soup. It’s possible to do it molecularly, although I don’t recommend it. I think it’s way overkill economically for you guys. (LISA – what do you mean molecularly?) It’s possible to take the biopsy tissue from what you already had removed, analyze it further than is done routinely, and looking at all kinds of targets, and then coming in and attempting to work on those targets with natural products or off-label drugs or what-have-you. It’s expensive, and it’s just not justifiable in your situation – from my perspective.

Next we discussed unconventional or experimental methods (off-label drugs) for attacking the tumor that he wanted me to discuss further with MDA. Things like Metformin which is already being researched because...

But what we know is that blood sugars that are slightly elevated, do drive insulin up, and that can drive growth. If I were to give you a drug like Metformin prophylactically, which is a diabetic drug, I would shrink the sugar supply to these cells and likely slow them down. It’s a debate whether that’s a wise thing to do or not, because we don’t have high level evidence to support it. What we have is low-level evidence in a concept that makes sense, and that’s gradually moving into the conventional world in the last year or year and a half, with major conferences carrying whole discussions of using Metformin specifically.

Another thing that could be done at MD Anderson – and I do have to disclose that I sit on the advisory board of the company – is a compound they make called Anbirzel. It’s an oleander extract, and properly dosed, it’s safe. But if you buy oleander on the Internet, it can kill you – cardiac arrhythmias and stuff. This stuff is used with a bunch of cancer patients, and it’s had some very profound effects on stabilizing growth for long periods of time with pancreatic cancer, liver and lung metastasis.

He also suggested that, since they have already requested some unstained slides from my biopsy (actual tissue from the tumor that their pathologists can run tests on separate from the tests already done at Northwestern), I ask them:

how inflammatory is the cancer, because he’ll have looked at tissue. And if it’s a highly inflammatory cancer, it might direct me a little bit more aggressively on how I will go on supplements.

So that ended my 4+ hours at the Block Center.

Next I spoke with a gyno oncologist who also was stumped and out of his league on my particular tumor but he did have high regard for, and has worked with, the oncologists at MDA. He gave me some really good questions to ask about alternative therapies such as hyperthermia, infusional therapy, destructive ultrasound and proton therapy. He stressed that surgery should only be a very last resort if there is no other choice since it is in such a "touchy" place. He was not surprised at all that Pollock would want to see me because, as he phrased it, "it's because you've got something weird."


He also suggested this:

The other thing you might say to them, and not to be confrontational, is – ask them, “Should I go someplace else that is as smart as you about this, and that I should get a third opinion from?” They’ll generally tell you. The good thing is, they see lots of weird pathology things there, and there isn’t anyplace like that in Chicago. I would have to say Mayo Clinic’s not even a referral place now. They do a lot of volume of certain things, but there really are probably only two or three or four real referral centers now in the United States. (Sloan-Kettering, MDA, Cedars-Sinai in Los Angeles, Johns Hopkins for pathology).

the pathology could give a very very very accurate assessment of the tumor itself, histology-wise, could be very helpful in determining what happens.

Histology is when we take a very thin slice of the tumor or growth or whatever it is, and stain it and look at it. Hormone receptors and all these other markers are like little side dishes of things that contribute to the behavior of the growth. So the histology is going to be very important – first to confirm – has it been looked at by anyone except the people at Northwestern who did the biopsy? (I told him no) So it’s good to have the pathology just to make sure it’s not something different than what they initially thought. The fact that they want the blots is good, because they’ll probably do some other testing of it. For some reason, Johns-Hopkins seems to be the pathology Mecca for pelvic “stuff.” I’m sure if you bring that up to the MD Anderson people, they’re going to cringe at the idea. The pathologist at Johns-Hopkins is Kurman, and he’s the person we send all weird pelvic stuff to. It may not be necessary. So I would ask them, “Do your pathologists agree with the Northwestern pathologists, or do they think it’s different? Or is there anything in these other tumor markers or anything that helps guide us as to what to do?”

The best thing is, this appears to be a very slow-growing, indolent, not involving any vital structure, thing. So I think anything we can do to arrest that will be of benefit. I know I’m kind of repeating myself – but you could ask them: Is there any thing that you guys can think of? Let me give you an example: we do destructive ultrasound on fibroids that we never used to do before. We didn’t know that it would work. But we ultrasound at very high intensity and it makes them go away. This type of thing that you have, I don’t know whether it’s even been tried for that, but it’s an idea that somebody should think about. So I would ask them very bluntly, “Do I need to go somewhere else? Do you guys know what you’re doing?” I’m kind of kidding a little bit – but I’d press them a little bit. “Are there things like destructive ultrasound or things like that, that can be tried?”

The reason I’m telling you that – the secret to this is aligning this as much as possible with whatever tumor we treat more commonly, and have success in treatment. And I’m sure that’s why the guy suggested the Gleevec, because probably he’s thinking this is probably very similar to what this is. That’s good – because those particular things grew slowly, were indolent and problematic.

I guess the other question is, “Is there any evidence this thing is growing at all – or has it just kind of stopped?” Because the only two scans show it to be the same size.

And that was that. I am armed and ready, notebook, files, pen poised, new batteries in the digital recorder, questions lined up. I head to Houston on Tuesday.

The hardest part will be leaving my girls for the first time in their lives.


Heather H. said...

Hi Lisa. It sounds like those people were trying to be as helpful as possible. Since they didn't have all the answers, they looked to arm you with the questions. :)

I feel for you about leaving your girls. After more than 2 years, I still have not been away from my girl for an overnight. I liked your attitude on a previous post about it, though, to try to look at it as a mini vacation, a chance to recharge your batteries a little. Goodness knows, getting any alone time with toddlers is nearly impossible! So make the most of it in a positive way.

And good luck!


Smitha Mathew said...

Great job Lisa!! You are as detail and thorough as one can get. I so want to be related to you!! Kidding aside dear, lots of healing energy coming your way.

During my physical challenges and therapies I have effectively used energetic therapies like Reiki (now -a-days there are many new forms of ancient treatments). The great thing is that the therapists can do it remote (can't explain), but whenever myself or one of my family members go through anything I pay for remote sessions. So the healer (as energy) are right there in the operating rooms. Cannot explain but it has done wonders in keeping the patient and family calm and complement/supplement you during recovery. It works only when you give permission and only for your higher good.

If you are interested in more informaiton, Alice Hess is a retired anesthetist who does remote healing techniques. http://healinghandsminnesota.com/about.html
It might make sense to talk to her to see how she can support you and your family. She can effectively support Len, kids and you mom too in this journey. I always say I would prefer to be rolled in, than be the one waiting outside. Of course each adult has to give mental permission to the healer and mothers can give permission for small kids.

Sorry I am adding more to your plate. But I could not NOT say about it.

And to your Mom, thank you from all of us too. WoW!! that is a tough assignment. And what a support. I am sure she is very grateful she can stand with you in this journey. Isn't that what we all want for our babies. My prayer for my O is "... please teach her lessons when I am around and let me be around to stand with her."

Let this all pass over you with Grace and Ease!! Congrats on the wedding anniversary, birthday and Lucy's first graduation.


PinkDevora said...

That was actually quite interesting, and I think they gave you some really good input. I'm trying to fight inflammation as well for other reasons, and think that finding a similar nutritionist would be very helpful....

So sorry that you have to be separated from your two precious girls :(. I'm hoping you find what you need in Texas.


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