New Trial (for me)

I am reposting the tx plan from my naturopath. I am not currently on this plan as I said, until my eating is completely back on track, but there's no reason you can't follow this and benefit if you wish

This is taken directly from the printout I received. Some of these are liquids due to my issues with pills, but you can take these in pill OR liquid form - it's your choice.

Dietary Supplements

ProOmega Fish Oil (liquid): DHA Improved overall survival by 14 months in recent study (34 months vs 22 months). EPA reduces inflammation, thereby slowing down growth of cancer.Thismay also help with hand pain.

Prescription: 1 tsp twice per day with food.(study was on 1.8g DHA) or 2 tsp at once.

Myomin: Natural aromatase inhibitor. Helps reduce estrogen's effect on breast cancer growth.

Prescription: Take 2 capsules three times per day. Or 3 capsules twice per day.

Vitamin D3 5,000IU: Regulates differentiation of cells and induces apoptosis. This can also help with mood, including anxiety and depression.

Prescription: Take 1 capsule with food.

Turmero Active (liquid): Decreases inflammation, suppresses cancer growth. This can help with hand pain and joint discomfort.

Prescription: Take 5 ml twice a day. Start with once per day, and observe your blood pressure. If you are ok, then increase to twice per day.

ALA and Hydroxycitrate: Research has shown the combination of the two to be effective against metastatic disease via their synergistic effect on blood sugar regulation.

Prescription:ALA: Take 2 capsules with breakfast, and 1 capsule with dinner.

HCA: Take 2 tablets twice per day, 30 minutes before food.

Others Considerations

Labs: Thyroid panel (TSH, fT3, fT4, tT3, tT4), hemoglobin A1C, CMP, CBC w/ diff, Vitamin D, LDH, IFG-1, Galectin-3, NK Cell assay, Cancer Antigen that you have been tracking (CA-15-3)

23 and Me

Salivary Cortisol Panel with hormones

Urinary hormone metabolites

Integrative Health Clinic- Dr. Gurdev Parmar

http://www.integratedhealthclinic.com/_aboutus/_bios/gurdevParmar.htm

hyperthermia treatment

RGCC Test

http://www.rgcc-genlab.com/

Ask for BRCA testing

Future Considerations:

Mistletoe Therapy- once results come back from PET scan.

(This therapy can cause temporary tumor flare, and I have a met near my heart so I have to have another PET before I can proceed with that tx, if I decide to do it).

*Melatonin: Blocks estrogen and epidermal growth factors, increases immune system function.

Prescription: 20 mg at night before bed. Do not go to bed later than midnight.

*Research effects if go to bed later than midnight

LDN: Increases Th1 response in the body, thereby helping to fight cancer

Prescription: Follow directions on bottle provided.I will start you at 3 g for 1 month, then increase 4.5 g.

http://www.lowdosenaltrexone.org

NOW Green Tea EGCG: Induces apoptosis in breast cancer cells and helps prevent metastasis.

Prescription: Take 2 capsules 3 times per day.

Unique E: Antioxidant, boosts immune system function, helps protect against kidney damage from high-dose EGCG

Prescription: Take 1 capsule per day with food.

Momine, our house will be like yours - very little fabric stuff.

Deb, all the articles say coughing asthma mostly affects kids and then they either grow out of it, or it becomes regular asthma. Either one would have been great - not this, because it's such a bear to treat My cousin has a nebulizer and it does nothing for me, though granted I never did repeated treatments so that may be why. I have not tried pred or any other steriod save for a steroidal inhaler called Advair, and I have the most powerful dosed version and still, no help. I can't wait to see the pulmonary MD - I am so tired (figuratively/physically) of coughing and yes, it isn't just upset that brings it on. I haven't been able to laugh for over a week now - same thing as your daughter.

Juneping, thank you for sharing this information. Many Alt healers contradict each other, unfortunately for us. I currently do not have the green tea extract - I did not buy every supplement listed and it's a good thing. I spent over $300 on the ones I did buy only to discover that I can't take tons of pills. Gonna give them to Ray LOL! He has no issues with pills or liquids, lucky guy!

But, I appreciate the info anyway because it will benefit others reading this

M1, faire costumes are SO expensive - I feel ya there! I'd buy a new one every year if I could. Instead I spend a couple years buying a complete outfit LOL! But this year, since we, too haven't been in around 5 years, my mother is buying me a complete outfit. This may sound a little morbid but I honestly don't mean for it to be - it's just honest:

My mom is worried that I'll be too sick by this time next year to attend faire, and so she wants to make this one perfect. I think that is really sweet of her. I certainly hope I AM ok this time next year, but just in case, this year will be a blast!

My issue at the moment is that I am in a minor flare so I'm aching a bit, but, I am worried about my sick breast - it bleeds or spots during flares so I'm going to have to protect my expensive chemises somehow. I usually keep a tissue in my bra so I can try that, or maybe scraps of cloth. It's a real drag.

In another week or so the breast will "dry out" and won't leak at all...but when she's angry, she leaks! (for anyone who doesn't know, my cancer has made it to the outside of my breast).

I'm worried too that I won't be able to wear the bodice because the breast doesn't like to be lifted and pressed too much. I was going to get a leather bodice this time. They have some gorgeous ones with Celtic knots, Celtic knot hearts, dragons and dolphins but the leather is too unforgiving across the bust. I missed my moment for a leather bodice And also, if I get Lupron I'll have hot flashes and leather doesn't breathe.

I'm concerned I may not be able to wear a bodice at all - even cotton and that pisses me off. I can buy a Middle East/Gypsy outfit - I have one already and they are very forgiving but OF COURSE I don't like that as much as the peasant with the skirts and chemises.

All I can do is go and have the shop lace me up and see how I feel. I'm crossing my fingers it'll be okay.

Pipers, you write so eloquently - that's supposed to be my job! Thank you for your input. I wholeheartedly agree: nothing shameful in being fragile - I mean...we have CANCER! And, this is not the place to argue and disrespect others or their tx choices. We all need to do what's right for us no matter our choices.

Leggo, thank you for posting these links. I will read them after the weekend

Today will be spent getting out all our Ren stuff and I need to fix up a few of my wigs and see which I want to wear for I *must* have pretty hair at faire LOL!

Have a wonderful weekend all and I will see you after!

Mu-WAH! *blows kisses*

ps:

Here's a couple links that have absolutely nothing to do with BC...just a little Renaissance (naughty) fun to make you giggle!

Remember...the first time? (from the Merry Wives of Windsor)

https://www.youtube.com/watch?v=ooUEdByzGas

And here is a good one from the Poxy Boggards. I know a couple of these guys!

I know we all have BC here, but ta-tas, sick or well, are well...ta-tas

https://www.youtube.com/watch?v=y_FD9jvoiyM

Take care everyone, and be well xx

Wow...shows what I (don't ) know. I've never heard of such a thing. We don't have kids so are really ignorant in that department but will for sure check that out!

Yeah, that's pretty much how I learned I had cancer. No imaging saw cancer ever. It wasn't til I had a lump in my armpit and the nipple got scabby that they figured it out.

Okay back to sleep for me now. Thanks for this helpful tip

Just wanted to bip in here really quick because you ladies who suggested nursing pads...OMG such a small bit of info and yet it's going to be a really REALLY useful suggestion for me! This will help me, not just for Faire, but for my flares - so much better than tissues! I even texted Ray today and told him about these things so he's taking me out tonight to get some.

Gee, with my teeny tiny body and great big boobs, they'll definitely think I'm preggo!

My gosh, thank you!

Hey, one other thing: I realize this is a BC forum and that my posts in this topic have veered off of that. It's just that until I go to UCLA which I estimate will be another month or so, I don't have anything to talk about.

I think Deb is right that posting is cathartic for me. I enjoy talking to you guys. Also, I don't want to discuss cancer all the time. We each live with it every day and well, I am hoping that some of this OT stuff I go on about might take your mind off cancer too.

I worry though because I know people read these threads to find information and I don't want to upset anyone with my "casual corner" posts. Now I wish I could go back and change my topic title to something LIKE Casual Corner LOL!

I feel it's better to come here and say *something* than to just stay silent during the long periods between doctor visits.

As Leggo has done, I invite you to post any links you feel are helpful to everyone. I also invite you to talk about whatever - doesn't have to be your condition. Vent if you need to, cry or laugh. I am listening and I know others are too.

I really want this to be a place of support. I don't care what tx you're following. Let us all respect each other and as I said, if you want to talk, about anything, please do. NO stress here ok?

See you later

Hi Notes,

When I get my appt with the pulmonologist (WHY is spellcheck flagging that word???) I am going to print yours and some of the other comments I've gotten here regarding asthma to show him. After reading your post I checked my breaths per minute and I am about 17 according to the stopwatch on my phone.

Whenever they put a pulse-ox monitor on my finger it reads 100%.

I wouldn't be surprised if I get too much CO2 though. My lungs just tickle and tickle, and as I've said before, eating (anything) makes them tickle worse.

Okay, now on to that lung tickling: I've always had this issue of coughing, and coughing more after I eat. I seem to produce a lot of mucous after I eat which also intensifies the coughing. Despite this being a lifelong condition, I do wonder if the met they found in my first (and only) PET, in my main bronchus has anything to do with anything. There is also a met in my trachea on the right side (which I can feel now in my throat - NOT with my fingers) is the culprit of the mucous. A friend's dad had esophageal cancer and his main complaint was clearing his throat a lot.

I am also wondering if the cancer is in my stomach. I've read BC rarely spreads there but when it does it's ILC, my kind.

During my severe period of anorexia from mid-Jan----mid-March I had no tummy issues. My appetite has returned, sometimes with the help of cannabis edibles. But I have what feels like an air bubble in my stomach. I feel it above the navel and under my breasts. It only seems to be there when I am hungry though, which is odd. When I eat it goes away. I wondered if my stomach is just playing "catch-up" after 2 mos of virtually no eating. But, I've been eating (mostly) normally now for nearly a month so I figured the air bubble thing should be gone. I have lower GI issues since last July - everything is loose, but I'm an anxious person and the illness has certainly caused its share of anxiety. I'm likely anxious even when I don't feel so.

You're all sitting there saying, see a doctor!

I hear ya and I'm trying and therein lies my latest news.

A few weeks ago I got a new GP (my previous had a baby) and this one does rounds in a hospital and sees lots of cancer patients, so despite not being an onc, he has more knowledge than a regular GP, which is really cool!

He was very sympathetic to my story of the onc at CoH telling me all AI's are the same - 'can't take one, can't take none.' He knew I wanted to go to UCLA and actually read to me what he was submitting to my ins co. Basically it was just that I wanted a 2nd opinion after being told to let nature take its course at a previous facility. He placed the request as STAT because it's been almost a year since my initial dx and I've had very little care in that time.

My ins claims that STATs are processed in 2-3 days. Why then, on the several I've had, do they take 2-3 wks to arrive? Well, non-STAT takes 6 so I guess that's why...

Anyway, I got the auth for UCLA and I called them early this week.

I knew there was a problem when pediatrics picked up the phone. My auth says: Dept: Genetics.

Pediatrics does have a genetics dept that serves adults. UCLA can't find my referral and says it's common for HMO's to send referrals out but UCLA is a huge place with numerous buildings and sometimes the referrals get lost and no one knows where they go.

Are you kidding me???

So they don't know where it is or even if it's there. The only thing they can come up with is that maybe I've been referred for genetics counseling due to my 'young' age of 46 at dx.

I do think it's a good idea, but AFTER I see an onc as I have NONE now! OMG, if I have to begin the process over again my ins will again take several weeks to send me that referral to UCLA. They always mess up my request and their own CPT codes. I can't tell you how many times I've had procedures booked and called MANY times to make sure they have: the RIGHT code for the RIGHT procedure and they ASSURE me all is well. Ray takes a day off to get me to said procedure only so we are told they have the wrong information and I have to reschedule.

This is why I've been a year with little care. (I am on state ins for my disability).

I have 3 calls in to UCLA to 3 different depts and so far no one has called back. My latest call to them went in today.

My next move is to write to the medical director of my IPA with a grievance. If I had a faster growing cancer, I'd be dead by now. I feel like my ins is hoping if they delay long enough and I will die. It's one less person to pay for.

It's the reason I've not been back in here after the Ren Faire. I've been stressed badly, frustrated, crying; my mother is crying. It's a horrible feeling knowing that I'm making all the calls and trying my best to resolve these situations - (one after another - the whole year) - and yet I can't find anyone to listen or call me back in a timely manner. I've told my family to sue if I die.

I have stage IV cancer and I don't want to fight ins companies. I just want to be cared for. My friends in other countries think it's barbaric, and it is. They tell me if I lived in these other places I wouldn't be going through all of this.

So I have no medical care news. I was supposed to be getting PET #2 to see how much more this beast has spread, in April. If I am lucky maybe I'll get one a year after my first...and that's not enough.

So of course I'm scared about my stomach. I don't know anything and right now, have no one to tell me anything. I do go back to see my GP May 15. He many be the best oncological care I receive.

I will let you know more of this ongoing saga when I know more.

Thanks for reading. I'll be back in a moment with another post.

Hi Gals,

This is not BC related but I wanted to share the news of our kitty - his name is Onyx.

They put in the scope and he has a large mass just behind the roof of his mouth, and this is likely cancer. He would require major surgery and radiation treatments after, and we do not want to subject a 16.5 yr old kitty to all of that. The mass may be putting pressure on his brain because he is also having difficulty walking and appears disoriented.

So when Ray gets home from work we will go and say goodbye to our baby. There will be a lot of tears tonight but we know that we gave him the best life that we possibly could these past 16+ years. Those of you with babies who've crossed over Rainbow Bridge, please tell them to expect our baby this evening. I will talk to the many we've had who've gone before and they will be waiting. For them it is not a time of tears but of reunion, where they can run and play in health and happiness.

I am very glad our friend from UK will be arriving this Friday. It's going to help us to stay positive. I try not to cry over him because we *did* do our very best for him - the best vet care etc and the most love any kitty could hope for. I think Onyx knew his time was coming because he's spent the last several days on our deck, enjoying the spring weather from day til night. He had the best life right up to the last day. Even so, it's hard every time we have to say goodbye to one of our babies. I will miss him very much.