Are there no options other than these harsh drugs from the MO?

heartnsoul76 · February 2015

Studies minimizing the benefits of cruciferous vegetables and most other alternative therapies are so disappointing. I feel like Tamoxifen has damaged nerve endings in my toes, eyes, ears, brain and spinal cord. I finally had to quit after 3 years 10 months of treatment - 4 months ago. Now my breast is pink and painful and my BS ordered a breast MRI.

heartnsoul76 · February 2015

Seems like everything i try has minimal effect if any.

From Oncology Nurse Advisor:

• Breast cancer: One case-control study found that women who ate greater amounts of cruciferous vegetables had a lower risk of breast cancer (17). A meta-analysis of studies conducted in the United States, Canada, Sweden, and the Netherlands found no association between cruciferous vegetable intake and breast cancer risk (18). An additional cohort study of women in the United States similarly showed only a weak association with breast cancer risk (19).

http://www.oncologynurseadvisor.com/cruciferous-ve...

Meow13 · February 2015

exemestane has caused this really annoying ear ringing. I have a year and a half left. I am tired of feeling lousy due to the meds. I keep praying immune therapy will become the cure.

Momine · February 2015

Heartnsoul, I am sorry you feel so down. However, you had no nodes involved, so I am guessing that your risk of recurrence is pretty low, even without tamoxifen.

As my doc puts it, broccoli won't save you. However, there is a strong correlation between high levels of physical activity and lower risk of recurrence. Exercise is probably the single most important thing you can do for yourself.

Related, yet separate, staying slender is thought to offer some protection.

There is also a correlation between high-fat dairy foods and recurrence. In other words, limiting cheese and butter is probably a good idea.

So, there are realistic things you can do to reduce your risk.

heartnsoul76 · February 2015

Meow - as far as the horrible ear-ringing... I buy something that you can find on the vitamin shelves at drugstores (it was recommended to me by an ENT) called Lipo-Flavonoid Plus. It helps a lot! It's kind of expensive but worth it to me for some peace. Sometimes my drugstore has a BOGO. One bottle lasts about 2+ weeks to a month (depending on how many you take) and costs around $30. It doesn't work all the time but sometimes all I hear is heavenly peace and quiet.

You're so right, Momine. Thanks for reminding me about all of the things that are in our power to protect ourselves from recurrence. But now I think I'm going to wimp out and possibly try one of the AIs. But if I can't hack it, I won't feel bad about it.

I understand some women had worse side effects on Tamoxifen than the AIs so I guess I'll try an AI for a minute. Although I worry about the AIs affecting blood pressure, cholesterol, etc., the Tamoxifen got to the point that it was completely undoable because it was causing peripheral neuropathy in my hands, arms, feet, brain and spinal cord. Tingling up and down my spinal cord then pain like spinal and cervical stenosis. And unfortunately, neuropathic damage is mostly permanent. I had dizziness up to 30x per day and it lessened to about 5x per day within a month of quitting Tamoxifen and I just noticed the other day that it is completely gone. So maybe some of the others are lessening, too. A brain MRI ruled out anything sinister.

I wonder if anyone else has experienced symptoms like these? I've found a few anecdotal experiences like this on the internet but not many. At first, I thought they were just delayed reactions to chemo, but not 4 years out. I don't want to end up in a wheelchair because my spinal cord is damaged from these treatments.

Then I saw this posted by Otter and it made me more afraid to skip the AIs - it says women who are strongly ER+ and HER2- should be on hormonal treatment for 10 years because our highest percentage for a recurrence is between years 5 and 10, NOT years 1-5...

http://www.ascopost.com/ViewNews.aspx?nid=15033

Momine · February 2015

Heart, I have not had unbearable SEs from the AI. I do have SEs, but they are manageable. Also, if you stick to a good diet and exercise regime, it will also help against the SEs. I had an initial increase in cholesterol (still normal, but higher than it had been), but it came back down without the use of drugs.

I am baffled by the tamox causing neuropathy. That is the first time I have come across that. What do the docs say?

Snowgirl63 · February 2015

helli Momine, I was just wide ring how you got your ovaries removed and why? I'm 51 and not yet in menopause so they injected me with Lupron to stop my ovaries and taking Femera daily. I just wondering if that would be best for me as well instead of injections every three months....I hope you can let me in on how your surgery came about. I haven't stopped bleeding since the injection and already have low red blood cell count so I'm kinda worried. I hope you are doing well! Love from a sister in British Columbia , Canada

heartnsoul76 · February 2015

Reducing SEs from AIs is another good reason to follow healthy diet and exercise protocols!

I think the pinkness and soreness in my breast could be cellulitis. In addition to scheduling the breast MRI, my BS gave me penicillin and I think it's helping. I've been on it since Friday night, and at least it's not as painful. Still pink, though. I told him about the nerve-ending problems and he asked if my MO suggested reducing my dose to 10 mg of Tamoxifen. I don't think I'm even going to try that. AIs work differently so if anything, that is what I would try.

In the discussion with my MO when I told her I quit the Tamoxifen, she had been saying other things could have caused this or that, but when I got to the tingling and pain in my lower spine and neck she didn't argue. She said we should do a spinal MRI, but she could have been thinking about a tumor pressing on a nerve. She also could have been thinking about my POV, because she could have ordered simpler tests (which is what my insurance company requested anyway). So, unfortunately, I didn't get to have a spinal MRI. My insurance company said 1st) a spinal X-ray - that was horrible, they took about 20 X-rays, I feel so radioactive and 2nd) a bone scan with contrast. Then if necessary, a spinal MRI. Both of those tests came back not showing any tumor activity, so that was the end of that as far as my MO's job went.

From questions posted online at other forums: one woman said she took Tamoxifen for 5 years, no chemo - and her doctor at the Duke Pain Clinic said perhaps the Tamoxifen caused nerve damage and it's being manifested in her as migrating neuropathy. Another lady said she took Tamoxifen for one year and developed tingling feet and toes, quit for 8 months and saw no improvement, then resumed and 6 weeks later started getting tingling in her calves as well. She's not taking anything else and doctors could find no cause, so she quit. Another woman wondered if Tamoxifen caused muscle aches and tingling in the extremities. She had been on Tamoxifen 3 years and experiencing those problems the last few months. She had chemotherapy 3 years ago and did not have any problems with neuropathy then. Her doctor said this is not an uncommon side effect - whoa! One doctor! And probably the only confirmation I can find. I could spring for a spinal MRI myself but besides the costs, I feel like if I keep away from Tamoxifen these side effects will somewhat diminish - within two years I think is the hope for any receding neuropathy.

Momine · February 2015

Snowgirl, most doctors prefer the shots to the surgery. In my case, there is a history of ovarian cancer (mom) and endometrial cancer (mom's sister), and I was not enthusiastic about the shots. So my doctors agreed that the surgery was a better option in my case.

Heart, it sounds like it is a rare SE of the tamox, but I was just wondering, as you have also apparently, if maybe the problem was something else entirely. I have a terrible back and it has caused me problems that are quite separate from any SEs caused by the cancer treatment.

Momine · February 2015

diycc, with all due respect, I think that may be overstating the matter slightly. Have you actually cured your cancer in 3-6 months with raw food?

Momine · February 2015

Diycc, yes, but I asked if you had cured your own cancer in 3-6 months with raw food.

So, the "book" you quote is posted on various quackery sites on the internet, and therefore the "information" in it is hardly suppressed. Perhaps just not taken all that seriously by anyone. The only thing that is a bit odd is that the whole book appears to be written by someone called Ross Horne, whereas your excerpt from it appears on the internet as published by George S. Gray. I am guessing you are George then, and that you probably don't have breast cancer or any medical expertise.

Momine · February 2015

diycc, my apologies on getting the timeframe wrong. Does that mean the person you are caring for is now cured?

dltnhm · February 2015

Hmmm A hundred years of suppression and unpublished? Since anyone has been able to self-publish for decades, I wonder why it's unpublished. Then there's the internet - where it appears to have found a following.

And I'm interested, like Momine, in the success of this diet in curing the person you care for.

SelenaWolf · February 2015

"The method I outlined has been known and suppressed for 100 years, and also the fact that cancer is not a disease but only a symptom of the ONE disease, Toxaemia of the Bloodstream."

Bullocks. There is absolutely no medical evidence that toxemia is linked to breast cancer or any other cancer of any kind.

heartnsoul76 · February 2015

Momine, the spinal X-rays showed mild to moderate arthritis on my entire spine but I don't think arthritis explains the strange pain. My bone scan showed inflammation at both shoulders but I guess most of us have that. Every so often my spine starts tingling up and down, up and down and then is sometimes followed by feeling like someone suddenly slammed a sledgehammer in my back along the waist. I could be talking to the President but I immediately drop down at the waist like a puppet when that happens. It's almost not like a choice, it's automatic. I suppose a visit to a neurologist is called for but it's just not in my budget right now. In the meantime, I'm hoping the SEs will continue to minimize after quitting the Tamoxifen.

I see my MO again in April (if not sooner because of this possible cellulitis) and see what she recommends. Hopefully there will be a drastic reduction in my back SEs by then so I'll have a little more anecdotal evidence to give her. The spinal tingling happened again last night after I walked a few laps around the mall, but the sledgehammer slam never came on. But it can happen when I'm laying in bed too.

I've never had back trouble before but I hear it's so very hard to fix or even diagnose. Not looking forward to jumping on board that train, but it's another thing that I need to at least try.

Momine · February 2015

Heart, I hope you figure it out, because it does not sound pleasant. You could also try a good orthopedist, they tend to be quite good at figuring out the nerve issues in the back.

Momine · February 2015

diycc, understood.

Loral · March 2015

Heart...You might have pinched nerves caused by your spine. maybe a herniation or bulging disc, I have the same problem with numb toes.

Are there no options other than these harsh drugs from the MO?

Comments

Categories