Early Stage Natural Girls!

Mini1

Well I don't know how well informed I am, but I am definitely on a journey trying to find something that will help me that isn't as awful as the cancer. So far, I seem to be on the losing side of the battle. Not wanting to take the usual stuff is usually met with with A.) shock, B.) Pity (I'm obviosly not too bright), or C. Both A. and B.

Everyone acts like I'm anti-treatment. I'm not. I'm just trying to make sure that the treatment doesn't turn out worse than the disease. I will be interested to see what gets posted. I called my onco doc to have a talk with him next week. I think he belongs to the B. camp. We'll see.

Kaara

Mini1:  Don't allow the doctors to intimidate you into doing something that you don't feel comfortable with.  You don't list your stage and grade of bc, but if it's early stage, you don't need to be doing all of the aggressive treatments that can cause additional harm to your body.  Also, age is a factor...the older you are, the  less aggressive the treatment needs to be due to the slower growth of the bc.  I'm 72, so I made choices about chemo and rads based on my age and the studies that supported that.  Be your own best advocate!

Mini1

I thought I had it all listed. I'll have to go back and check. Stage 1, no lymph node involvement.  Lumpectomy with radiation (done 2 weeks ago). 18 OncoType, so no chemo. ER/PR+, Her2 neg. Tumor size 1.5 centimeters.

Mini1

Oh and I'm almost 56.

purple32

Don't feel too bad MINI1

At least you got radiation. People really look at me like I'm insane !

Kaara

Mini1:  That's good...very early stage, but being under 60 it was probably a good idea to go ahead with the radiation just to be on the safe side.  My studies said it was unnecessary for women over 70 and it didn't change the outcome or overall survival, so that is why I opted out.  My onco score was 13 so there was only a 9% chance of recurrence.  I'm confident that my decisions were the right ones.  

purple32

Yes, Mini , I agree with Kaara. If not for my lung disease, I would have lined right up for radiation. I am "0nly" 54  ( depending on how you look at it  :>)

Momine

Mini, I can see how it is a bit of a conundrum with those stats. What are your reasons for not wanting the AIs? How is your weight, diet, exercise?

Anonymous

Mini - you might have all stats in but on private.

Mini1

Momine - The SE's are my biggest concern. My mom had a bood clot, and I've had one in my leg, though it was long ago and I did use HRT for 2 years w/o an issue and used birth control for several. I've had lung surgery, but don't have any real issues unless I get pnuemonia. Thankfully the surgery was not on the right lung. I have osteoporosis and am only a candidate for Prolia and that scares me worse than cancer.  Won't take it. No way, no how. I'm only 55. I don't want to be a slinky at the end of 5 years and the bone loss from AI's is significant, but Tamox scares me too. A SE of your CA medication shouldn't be an increased chance of another kind of CA. I have a lot of bone pain right now, and don't sleep well even with a sleeping pill. I also have balance issues that I didn't have before and significant fatigue. I also feel like I am becoming depressed, which is totally not me. 

I exercise and have gained back 13 of the 22 pounds I lost, so I hit three digits on the scale most days. I eat a gluten-free diet with a little hormone-free meat (mostly chicken and turkey), and tons of fruit and vegetables. I'm not working now, but did work a high stress job for 15 years. I'll be looking for something less stressful in amonth or so. I have a good life for the most part. Good family ties, supportive friends and church family, and 3 of the sweetest grand babies you'll ever meet (including a brand new set of twins!).

I'm not anti-treatment, but I know that you can over treat yourself as well. I'm just trying to find the balance for me. So far I'm not doing very well at it.

Diana - Thanks. I'll go check that. You're probably right. I was a little spacey when I filled that  out. I may have missed that part.

purple32

"I have osteoporosis ..."

That pretty much does it for me with the Als mini.  I can relate. I have already broken three bones. Osteoporosois can knock you out of the game in a totally different way than cancer, but it still can be debilitating/disabling if you break a hip etc ... I wouldnt do anything to accelerate my bone loss at this stage.

As for tamoxifen, the blood clot risk is valid.

I only wish we had better options.

Good Luck to you.

Mini1

Thanks Purple. Some one mentioned thay take 1/2 the dosage of Tamox and had found some studies in the UK that showed the lesser amounts had the same affect. She didn't have the sites anymore but was going to look. I'm looking as well. I will add them if I find them.

purple32

YW Mini.

Not sure if you saw this site or not :

jnci.oxfordjournals.org/conten...

Mini1

Thanks Purple, I'll check it out now.

Momine

Mini, I looked up the prolia, and it does not sound so bad, nor is it really an AI as far as I can see.



As for the urinary and respiratory tract infections, that most likely has to do with the drying of the mucuous membranes. I find that, so far, taking pro-biotics helps a great deal with this.



I am not trying to talk you into it. An argument can be made in your case (not in mine though) for skipping it. OTOH, I am not sure you need be so scared of it. If you find after three months that it doesn't work for you, you can go off it.

exbrnxgrl

Prolia is not an AI at all. The three AI's are Arimidex, Aromasin and Femara and their generic equivalents. Caryn

Mini1

Monine - the Prolia is for osteoporosis not CA. As for side effects, let's see - atrial fibrilation, abdominal pain, nausea, vomiting (it's taken me over a year to get my stomach to heal), GERD , cystitis, upper respiratory tract infections (I've had lung surgery and radiation), pnuemonia (had it more times than I have fingers, and yes, I have all my fingers), osteonecrosis (I need a tooth replaced and have a mouth full of crowns as it is), pain in extremeities, musculoskeletal pan, bone pain (already have those three), insomnia (have that too), rashes, hypoglycemia, increased risk of infection, celluititis, and increase of pancreatitis (I have an "anomoly" on my pancreas and had pancreatitis last year).

I know that not everyone gets all of those, or any for that matter, but I'm not feeling particularly lucky right now. Also, if you look at the folks that have had issues, they don't just go away. This is a bi-yearly shot, so it stays in your system for a long time, so if you have these side effects, your pretty much screwed for at least 6 months. Oh and did I mention that it's appx. $1700 that's not covered by insurance?

Also, my Doctor told me that if I get the shot I will be the youngest person to have gotten it in their office. 65 is usually when it's started. And this is someting I'm supposed to stay on forever even though there are only studies on the "long-term" side-effects on people that have taken it for 3-4 years???

I don't mean to sound cranky, btw, it's just one of those days.

purple32

Mini1

I hear your frustration, and can SO relate to your post!

 When drs. were telling me about rads., with my copd , they kept making it seem pretty harmless.  Then, when I askled if they thought I could end up on oxygen because of it, they looked at my pulmonary function tests and said " maybe".

No thanks.

 When I was first dx with osteopenia , I took Actonel. They scared me into taking it despite SEs. It did squat for me. I broke  three bones WHILE on it, and my BMD declined each year. Then, when I saw on TV there were class action lawsuits of ppl who had their femur just break out from under them without cause, I went off .  DOH!

When I got my most recent BMD results and showed I was a hair away from osteporosis, but wanted me to take arimidex they told me it would acceleartare the bone loss by 7 times. No thank you.

I have low BP and blood circulation issues that make me a high risk for blood clots so I am not looking at at tamoxifen.

I can deal with crap like hot flashes ( went thru meno at 41) Who can't ? And I have joint pain 7 days a week with these osteo issues, but some of this stuff is disabling or deadly- not much different than cancer ...deadly.

Will I wish I had used these things if I have recurrence ?  Maybe.  But I guess I will have to emind myself that I might have died of a blood clot or stroke or broken my hip and ended up in a  nursing home.Any of those things  seem more likely actually.  The difference is I am not doing anything to ACTIVELY make my bones or lungs worse or to increase my risk of stroke etc ...

It's incredibly frustrating.

Mini1

Purple - I am frustrated. And I never thought about low blood pressure and clots. Mine is low, so another check mark for the con side. I guarantee you there will be a Prolia class action suit in a few years, you watch and see. You are absolutely right about the hot flashes and back pain. Big whoop. The meds make them worse, I know that much. I want to do the right thing, but I don't know what it is. It's like you're damned if you do and damned if you don't.

Momine

Mini, ok, I am a little confused. Does your doc want you on an AI as well as on prolia?

Mini1

Momine - yes.

purple32

Momine

If I may join in, all of the bone bldg. drugs seem to be coming up with terrible and serious  SEs ...nothing benign  or things you can live with ( like joint pain). I am talking about things like just walking along and having your femur bone break right out from under you. I have also read that the IV drugs of a similar kind are potentially MORE dangerous.

Yes, mini , I have been living with the damned if you do and damned if you don't catch 22 of BC tx for awhile now.  It is a constant pit in my stomach.

Good luck to you!

suzieq60

I'm taking Aromasin and have had 4 Zometa infusions. I also take D3 and Caltrate supps. Just had a bone density test after 2 years and there is no significant change. So, looks like the Zometa infusions did the trick.

Natkat

Just a question - why so much dicussion of the corporate meds on a "natural" thread? Minnie i am on same research track as you. I will opt out of the hormone blockers. There is a good website called breastcancer alternatives. Also some good posts on this site about natural hormone blockers. My research is leading me to study estrogen metabolism. Not very far along yet. Prolly i will have treatment plan worked out in a month or so. Yes i hate that patronizing look from corporate doctors. I like my surgeon but some are no more than drug dealers with kives.

Momine

Mini, ok, thanks for the clarification.



Purple, I know those drugs have problems, but not everyone has horrific SEs.



Natkat, the discussion is because mini wants to skip the AIs, so the pros and cons of those naturally enter into it.



Susie, I do not have osteoporosis, but do have osteopenia on my spine (on the dexa done prior to starting femara). I am taking calcium and D3 and adding exercise that challenges my middle. We will see how it is doing on the next dexa in September.

suzieq60

Momine - looks like I had mild osteopenia too, I was just so pleased to see there had been no change.

The reason I'm posting this here is because it shows that the 'corporate meds' with supplements do work.

purple32

"Purple, I know those drugs have problems, but not everyone has horrific SEs."

No Momine, not everyone...just as everyone doesn't get cancer , but some of us do.  I think it would be far easier if I came in to this W/OUT bone disease, lung disease, many other health issues...then the SE profile  would be much lower risk. INSTEAD, what I have in my favor- at this point- is my early staging.  So, all of us are in different places.

Just as a stage 4 person feels very different than a stage 1 , a person with advanced bone disease/ not mild osteopenia, may certainly feel different about taking a med that accelerates bone loss 7 times.  I understand why stage 4 sisters have their own thread. There IS a big difference in their issues as compared to mine. I respect that . So it is with my underlying medical issues and the ALs - apples and oranges,

 Mull it over, if you will.

Peace

Momine

Purple, certainly that is all true. I just thought your description of the SEs was a wee bit dramatic.



It is definitely a lot trickier when you have other medical conditions along with the stupid cancer.

Mini1

Momine -Trust me the side effects can be dramatic. Anastrozole was a nightmare. I won't go nto all the details, but trust me, for some of us it is awful. I told my Dr. I wouldn't take it for 5 more days let alone 5 years. I'd take my chances with the CA. I don't have as many with Aromosin, but I still don't like the idea of putting so many drugs into my body.

I don't want to be someone's guinie pig, but am being made to feel like I'm signing my own death warrant if I don't goose step along with everyone else and take one of the drugs. I had practically no hormones in me to start with which is why I was taking bio-identical hormones in the first place (before my dx). If I don't have hardly any in me to begin with, I would think there has to be something out there that is less toxic than Tamox and the AI's that I can take that would afford me some protection from anything lurking within me. And the dosages. I am a small person yet I get the same dosage as someone 2 or 3 times my size. Why? I also eat well, exercise, don't smoke, drink very little (I'm talking 3-5 drinks a year), and all that good stuff. Doesn't that count for something? 

Call me wacky, but I really don't think that a side effect of your cancer medication should be the chance of getting a different kind of cancer or losing your bones and becoming a human slinky. But hey, what do I know? I never went to med school or bought stock in a pharmacuetical company, I only have cancer.

Momine

Mini, you are not wacky and of course some people have very serious SEs. The AIs are very new and I agree that further investigation of dosing, duration etc would be nice. I turned down tamox and opted for an AI instead, because the differencein the SE profile, so I do hear you.



However, for every person with some horrible SE, there are countless others who tolerate the stuff reasonably well.