What about non-orthodox "cures"? Have you tried?

[sisterofher2+]

Hello ladies.

I do not have cancer myself. It is my sister, who was diagnosed with HER2+, ER+/PG+ stage 2 breast cancer. She underwent mastectomy, chemo, herceptin and is now on Tamoxifen.

When she was diagnosed, we had no idea what to do, what was good, what might have helped. There's no cancer in our family history.

My sis listened to her doc and did everything her doc told her to do. She is still doing exactly what her doc says and prescribes although her quality of life has been reduced dramatically due to Tamonifen use. She has lots of side-effects.

I myself did a lot of research about cancer, read studies, bought books on cancer treatment published by MDs and contacted 2 integrative cancer doctors in the US, asking for advice on the situation.

When I was reading this forum the other day, I got lots of questions from you, ladies.

Can you please answer them? I am trying to understand why my sis is doing what she is doing (not believing that a natural substance or a combination of natural substances could make and keep a person "cancer free" but only trusting the chemical pharmaceutical drugs). She is still very young, has 2 small kids that need their mom alive and healthy.

Have any of you ladies tried alternative treatment protocols (vegan diets, juicing, the Budwig protocol, UV protocol, aloe vera, apricot seeds? Have you followed this or that protocol diligently for a period of at least 6-8 weeks with benefits, i.e. remission, being "cancer free"?

I would really appreciate any advice on this matter. You see, my sis is now in total denial that anything natural works, because her oncologist told her smth like "if anything natural really worked, all the people would have been cured and remained cancer free".

[Lucy]

Has your sister discussed changing to a different drug with her oncologist? Maybe one where the side effects aren't as bad? There will likely be side effects with anything she takes but maybe she can find something more tolerable. I've heard that tamoxifen can be rough and some just have to stop taking it due to the side effects.

I was a vegan for 4 years prior to being diagnosed with cancer so, at the least, it didn't prevent it or "cure" it.

If I were your sister, I would talk to my oncologist (and maybe even get a second opinion) and ask what not taking tamoxifen does to her odds of recurrence, given that she's gone through chemo and herceptin treatment. I might even ask (insist) if they could do scans or MRIs to see if there is still cancer left before I made any decisions. Ultimately she will have to decide if what she's going through right now is worth the risk of not taking it.

That all said, healthy eating and exercise don't hurt, although a lot of times it's easier said than done.

I wish you and your sister all the best and hope things get better for her. She's lucky to have you looking out for her like this. Sending cyber hugs . . .

[sisterofher2+]

Thank you, Lucy.

You were a vegan ( I suppose you still are), did you take B12 vit as a supplement? Flax seed oil?

I will definitely talk to my sis asap regarding the second opinion about taking tamoxifen or not. He doc said there's no other drug available for her at the moment.

You see, she knows (!) that tamoxifen is a cancerogen and may actually increase her chances in getting liver cancer. The side effects she is experiencing are liver discomfort/pain, productive coughing and hay fever like sypmtoms (in addition to aches and pains all over the body, concentration difficulties, hot flashes and way too much anxiety).

Her doc suggests that she should be taking tamoxifen for 10 years, instead of 5, referring to some recent study. But my sister is very scared of the permanent liver damage/hepatitis/liver cancer.

But she can't make a decision on her own. She is totally dependant on her doc's opinion and prescriptions. If he says smth like "you better stay on tamoxifen for another 9 years, I will prescribe you 10 other drugs to manage your side effects", she will accept it. Seriously. She is way too scared to have her cancer spread or that a new tumor is being found in her body.

[waterdreamer]

I too was vegan, the problem was that I ate too much sugar, so that negated any of the positive effects of eating a healthy diet. I did not get enough exercise and I was completely overwhelmed and stressed out. I believe that diet does make a difference. There is a great book which I recommend reading called Radical Remission. I am experimenting on myself right now. I have not done any chemo since November, and am juicing, eating vegan and taking supplements. I have not done any scans since September, and will do my next ones in March, so I will keep you updated. Thank you for caring so much about your sister and her children!!

[Lucy]

I was taking a B12 supplement but am taking a break from them at the moment because my levels were very high. I've heard flax seed oil is good but I haven't tried that yet.

Okay, about the symptoms . . . is your sister finished with herceptin? I'm not sure what you mean by productive coughing but I have a cough midway between my treatments. My oncologist says this is not uncommon. The concentration difficulties are likely due to the chemo. I'm done with chemo and I still have that issue, as do many others on this board. I was told it could be 18 months to 2 years before that got better but from what I'm hearing on this board, that may last longer than that. They can do cognitive testing (I had that done just last week) to see if there are deficients and if so, where they are. I'm still waiting for my test results but my understanding is they give you information on how to cope/deal with any cognitive deficiencies (including concentration difficulties) you (in this case your sister) may have. My oncologist's nurse told me that hot flashes are a good thing. She said that it means the drug is working. I'm taking a different drug than your sister (I'm taking anastrazole which is more for postmenopausal women, which I get the impression your sister is not) but I would think it would be the same. I read somewhere that if you're having hot flashes as a side effect that it improves your odds by a certain percent and the muscle aches and pains also improve your odds - the aches and pains percentage was greater. I can't remember the exact percentages for them but it was pretty significant. So why it may be a pain (no pun intended) it's my understanding that it's a good thing. I'm wondering if the anxiety is more about having cancer than it being a side effect of any drug she's taking.

My oncologist also told me that I would need to take the anastrazole for 5 years but told me that is because they don't have enough long term information on its effects and that it's possible that they will extend it to 10 years before I reach the 5 year mark. So I don't find it surprising that your sister would be told 10 years for tamoxifen. But I do think it's possible that something else may be as effective without all the bad side effects.

Good luck. Keep us posted!

[thinkpositive]

It is so wonderful to see how much you love your sister. You are both so lucky to have each other.

My mother had breast cancer at 59 and had to take tamoxifin for 10 years. Although she did have side effects (raging hot flashes), the tamoxifin did work. She died of dementia related issues at 81 without ever having any further issues with breast cancer. Throughout her life she was very strict about eating healthy foods and always exercising. She was never a smoker, never overweight, never a drug user, and no family history of cancer. However she did get cancer. Did the tamonifin "cure" her? We'll never know. However, she BELIEVED that it did. Everyday when she took the tamoxifin, she was confident that this was the "cure". Because she felt so strongly that it was the "cure", I believe in her case it was. The mind is a very power full.

My cancer is not ER+ so I do not need to take tamoxifin. However, I do believe in using non-orthodox methods to supplement chemo, surgery, and radiation. There is a great book that I'd recommend that explains these methods (Anti-cancer, a new way of life). Perhaps your sister would be open to some of these methods.

Bottom line, your sister will need to find a treatment(s) that she believes in. Nobody has this cancer thing figured out yet so we each need to do our research and then select a treatment that we believe will work for us.

Good luck to you and your sis.

[sisterofher2+]

Lucy, by productive coughing I mean not the dry type of cough, but the one with mucous discharge. She takes her tamoxifen pill in the morning and then all the side effects appear right away. They wear off by the evening.

She was done with herceptin a long time ago. Possibly a 6-8 months ago if I'm not mistaken.

The anxiety is definitely related to the fact that she fears another cancer diagnosis, however I've known her as a very brave and a fearless young woman all my life, and when I hear her telling me how scared she is about this or that several times a day, it makes me wonder whether it is the drug that is making her way too anxious and restless.

I have been reading about the B12 vitamin. There is no toxicity associated with its "high levels", on the contrary, it is of the protective effect to the healthy cells. Just like C-Vit, D-Vit, B17, E-vit. Vegans should be taking a supplemental B12 vitamin. I suppose that there's enough B12 in a multi vitamin complex just in order to cover the daily minimum.

The flax seed oil is a great natural source of omega-3 fatty acids for vegans. The Budwig cancer treatment protocol is based on the flax seed oil and cottage cheese. I've read a book by Chris Woollams called "Oestrogen. The killer in our midst". He mentions phytoestrogens (flax seed is a phytoestrogen), that if taken daily will sit on the receptors of the cells instead of the dangerous types of estrogen (oestradiol), thus not letting the estrogen become dangerous to the body.

Thank you, thinkpositive, for your reply. My sis does not believe in anything that is unorthodox. She wants to believe, she does, but there are so many fears and doubts in her. She primarily believes every word her doc says and if he tells her that she should excersise every day - she does that. She asked the doc about the apricot seeds (after reading about them on a cancer related forum) and dropped off the idea of trying them because her doc did not approve.

Every now and then one can see articles in the newspapers/testimonials from people who refused chemo, radiation and in some cases even surgery and managed to rid off cancer by using other treatments. My sis believes that it may be true, but is unsure whether these kinds of treatments would cure "her" cancer (the agressive her2 positive type) if it decided to form a tumour again or spread all over.

We now know why she may have got cancer on the first place: oral contraceptives (prolonged use) since early teens, diet with junk/processed foods, loads of sugar, too little or no excersise.

By the way, ladies, have any of you been visiting the cancertutor.com website? Any thoughts on the treatment protocols described there? I tried to make my sis begin studying the site, but she hasn't shown any interest yet. She does however eat healthier now. No more added sugar in her diet, lots of veggies and fruit, she excersises every day now and takes yoga classes.

[Lauriesh]

I give you credit for researching and trying to help your sister, but this is her fight and she needs to do it her way.
honestly,I would resent my sister always telling me about this cure or that, or don't eat this or that.
While it is good for everyone to eat healthy and exercise, there is no definitive proof that turmeric or apricot seeds or Budwig will keep her cancer from returning.

I would support her, help her with her kids, let her discuss her fears without dismissing them .

Laurie

[sisterofher2+]

Thanks for your opinion, Lauriesh.

I am not telling her what to do or eat/not eat. She is taking her own decisions based on what she deems fit and what her doc advises her to do or eat.

I just wonder whether use of tamoxifen gives a "definite proof" that her cancer isn't going to come back? You see, I doubt that it does. The research and studies on tamoxifen actually prove the opposite. OK, fine, maybe that particular type of cancer wouldn't come back, but the other one, the more agressive kind might (brought about by the drug). And then there is no treatment and no cure.

You do not have to remind me that this is her "fight". I know that perfectly, thank you. I did not research on cancer before she actually requested that I help her with obtaining some information on the "cure". I wouldn't be saying anything if I wasn't asked.

[Lauriesh]

There are no guarantees that tamoxifen will keep the cancer from returning, but there are studies and trials,etc that show it definitely reduces the risk of recurrence. It would not have been approved by the FDA if there was no proof.

You stated that "I tried to make my sis study this site, but she hasn't shown any interest"
That seemed to me that maybe you were pushing too hard.

Laurie

[rhondalea]

You might want to suggest to your sister that she start taking the Tamoxifen at night. That's what I do. I have no trouble at all with Tamoxifen, and I'm now cancer free almost four years.

If she's having an unbearable time with it, then she needs to consider the options that will allow her to switch to aromatase inhibitors.

Most of the treatments you've described have been thoroughly debunked. There's no evidence for their efficacy, and many have died relying on alternative "cures." Using complementary medicine, on the other hand, is often beneficial to quality of life, and it can support the traditional treatments that have been demonstrated to work best.

Nothing provides a guarantee. Cancer likes to come back, and it's sneaky. We do everything we can to avoid it, but even very early stage women have been known to develop metastatic disease.

I agree with Lauriesh that you need to allow your sister to make her own way. It may well be that her choices have saved her life, and she will live a long and healthy one going forward. Before Herceptin, women with HER2+ cancer had very poor survival no matter what treatment they chose. Now, because of Herceptin and other targeted therapies, even HER2+ metastatic patients are surviving and thriving. The alternative community has a lot of anecdote--everyone's cousin's uncle's sister-in-law's best friend was saved by a quack cure--but if there were studies that demonstrated these treatments worked, medical doctors would incorporate them in their treatment plan. They don't work, so doctors discourage patients from pursuing them.

One thing you might suggest to her is Metformin. There's some evidence that it prevents recurrence, and there's a large study going on right now. It's probably too late to join the study, but it should be possible to get a doctor to prescribe the study dose (850 mg/2x/day).

Finally, I would not recommend cancertutor.com to my worst enemy. It is a pseudoscience website. You could, however, help your sister by directing her to this group.

Rhonda Lea

[sisterofher2+]

Thanks to everyone for replying. God bless you all.

[JessicaV]

Hi, How lovely of you to care so deeply about your sister's happiness and health.

My cancer is not ER+ so I do not take tamoxifen.

However I have good friends who do. I put your question to them and somewhat belatedly, here is what they told me. I hope it helps.

The two main and most distressing initial symptoms they describe are hot flushes/menopausal symptoms, and joint pains which can be agonising, along with concern about their bones.

Here's what they do about them.
One friend has several fans in the rooms she spends most time in, so is capable of creating an incredibly strong blast of cool air that she can sit in the middle of. Her grandchild loves it too! She says it really does help and is such a relief but also fun.

For the joint pain, a friend who gets bad arthritic pain too recommends 1500mg daily of glucosamine sulphate (preferably the Dona brand crystaline type which she gets through Ebay or Amazon). Her oncologist said this is fine, and also told her to take VitD 1500units a day, plus watching to see she gets enough calcium at diff meals to her main iron intake, plus the normal supplements of minerals and vitamins. This has greatly reduced her joint pain and worry about bone density etc.

The key point they tell me is that unless they can cut the estrogen in their body by either Tamoxifen or a very similar drug, or by surgical removal of ovaries, their bodies are perfect petri dishes for their type of cancer to regrow. And even though the side effects are bad, and they don't yet want this surgery, they want to live and keep on living. They prefer take these artificial pharmaceuticals which are part of a proven system than to risk their lives depending instead on alternative methods that are not yet properly proven scientifically.

Each has to make her own choice, and sometimes it is hard for our loved ones who disagree with our choices and think we would be much better off following their choice. I would urge you to keep an eye on what new alternatives are arriving in the way of new drugs and scientific research in this cutting edge area. Maybe a better choice you are happy with too will arrive tomorrow.

[Kkmom]

Lucy,
I don't want to get this thread off track - but your post sure made me feel good. I have been NED for about 2 years now. I take arimidex and I have tons of hot flashes, along with joint pains. I find myself second guessing any pain or change in my body "thinking could it be cancer". So after reading your post about what the oncologist nurse has to say about the side effects from arimidex can be positive - I feel a lot less anxious about any little pain or twitch I have. Thanks for your info - Pam

[leldredge1]

It sounds like your sis is following her doctors advice, exercising, eating healthy and trying to prevent a recurrence. I have 3 sisters and they have all been very supportive of me. If they tried to tell me why I probably got cancer, what I should eat, what I should not eat, and voiced doubt in my team of doctors and my decisions....I would not be speaking to my sis at all.

[JessicaV]

Dear sisterofher2+ (http://her2support.org/vbulletin/member.php?u=11811), I am not sure if you understand how cancer metastasises? HER2+ breast cancer is highly prone to metastasizing, so is a bit like melanoma skin cancer in this way, where some other breast cancers are much less prone to metastasizing like common squamous cell carcinoma. When a cancer that is highly prone to metastasizing changes from an "in situ" cancer to an invasive cancer, it starts to slough off cancer "seeds" known variously as metastatic cancer cells, cancer stem cells, stem-cell-like cancer cells. They can transform back and forth from very primative menenchymal cell form to a very typical epithelial cell form.Some of these cells stay in the tumor They are then capable of changing the gene-line of the tumor cells to ones that use different pathways enabling them to get around pathways initially blocked by drugs or radiation. This makes the next generation of tumor cells resistant to that specific drug or treatment. Some of these cancer seeds float off in lymph fluid or blood, and are not always able to be targetted by any treatments because they don't divide much at that stage. They hunt out suitable spots in mostly in brain, liver, lungs and bones, and grow into metastatic breast cancers. Luckily the new drugs for HER2+ cancers including herceptin, perjeta and others are good at seeking out these baby metastatic cancers where cells are dividing quickly, and killing them off. Each of the new ones targets diff pathways which gets around the resistance problem.
This metastasing process is the biggest risk that confronts all of us with HER2+ breast cancer, whether or not we already have metastatic cancer. This is what will kill us if we are to die of this cancer. HER2+cancer used to kill over 50% of those who got it, even when caught very early, whatever the patient did in terms of good personal health care, diet, exercise, apricot kernels etc. Now with the new drugs, that drops to between 2% and 20% depending on diagnosis. For those who are ER+ Tamoxifen and Aromase Inhibiters and the new hormone treatments that cut the estrogen in the body down to a minimum, modifying the hormonal environment means the cancer seeds are much more likely to fall on infertile ground where they cannot grow. The 5yrs/10yrs issue I understand is about how long changing this hormone environ continues to produce a big drop in new metastases. I had a friend who got a dozen golfball sized metastatic tumors in liver and lungs within months of stopping tamoxifen after 6yrs on it. Luckily with intensive weekly chemo and herceptin and hormone treatment for a year, they have gone again. But it demonstrated quite clearly for her what a difference that hormone treatment was making. Everyone is different and the diff it makes depends on how strongly ER+ one is.
So even if some of these alternative treatments can help prevent primary cancers, unless they can provide powerful protection against metastatic cancer stemcells, they are not going to be nearly as much help to your sister as the Herceptin-family of drugs, the chemo most effective in combination with those, and the estrogen-reducing drugs.
Your sister may well, like me, be currently mostly concerned with the inner battle to put aside fear when standing in the shadow of death which is what it means to have this sort of cancer. For me, I have my treatment plan, I have good medical team, I really don't want others revamping this for me, because I have other places I want to be putting my energy. I strongly suggest you ask her to tell you frankly and honestly how you can be the best sister to her at this really tough time for her. It is really important to be sure you are helping her not hindering, and that you keep checking with her that you are not getting it wrong. This time could bring you and your sister close, or it could divide you in a very sad way if you get it wrong.

[ariana]

Jessica V. I needed this post. I was balking at taking Arimidex. Stopped tamoxfin
do to sever muscle pain in my legs. I am still on Arimidex that causes sever gas and
constipation . And once in a while joint pain thats constant till I go off of it for
48 hrs then its gone and I begin again. THANK GOD THATS FEW AND FAR BETWEEN
when I feel the need to do this. I have put off going on Fosamax to get the side effects from this drug under control. So I will know which drug is causing what
problems. This weekend I will be getting my persciption filled.

YOUR EXPLAINATION AS TO WHAT HAPPENS to cancer cells have been an eye opener
for me. WHICH TELLS ME newly diagnosed patients should attend a type of class
to understand why things are done. The Onc. are over whelmed to dispense such
knowlede so throughly as you just did. I will be saving your post for future REF.

THANKS SO MUCH.

[JessicaV]

Hi, Glad this info has been helpful to you. I strongly believe that knowledge is power and that we have to be able to put together the fullest picture we can from the most probably research findings to make the best decisions for ourselves, and to handle the reality of this cancer well.

I do feel like a voice in the wilderness prophesising gloom and doom, but it really bugs me that this vital bit of the picture is left out when we are being told about our cancers, treatment options, prognosis etc. Even if it is scary information, it seems to be accepted as the most probable explanation, though not totally proven.

When my daughter found research that suggested that lymph involvement happens parallel to the spread of the cancer but there is not a direct step-by-step pathway, I didn't like what I was hearing: it came out of left field, she could not be right. Then we found the research into cancer stem cells. That info made sense of the randomness of who gets mets and who doesn't, why TNBC and HER2+ are classified as much more aggressive cancers, how resistance works, etc.

I have heard that some cancer vaccines may be based on the cancer stem cell processes. But my onc said until one or more targets can be identified on the CSC, researchers cannot start testing/developing drugs that hit those targets. It will come I am sure.

But do follow the advice of others on this thread, and explore different effective drug options, and keep up to date with both options and good treatments for side effects. (I am sure you do that, but don't settle for less than the best)
Wishing you well.

[Kkmom]

Jessica,
I just want to say "Amen" to your post. I have read more than I every wanted to know about breast cancer, but your info is one of the best. Pam

[Jackie07]

In response to the question: I would really appreciate any advice on this matter. You see, my sis is now in total denial that anything natural works, because her oncologist told her smth like "if anything natural really worked, all the people would have been cured and remained cancer free"。

I've experienced exactly the same thing after my brain (tumor) surgery in 1990. It was a huge Central Neurocytoma that had been growing with me for probably 30 years. It was too big, it had to come out! The surgery took 23 hours ... Oldest Brother was the representative from overseas where all my family/relatives live. It so happened that my neurosurgeon is of the same ethnicity as me. Consequently, when my (Gringo) husband brought to his attention that my Oldest Brother was using Chinese herbal ointment to massage my stiff neck and shoulder (due to 10-day semi-comatose), the neurosurgeon's response was simply: "They believe in that sort of stuff."

Fast forward to 2003, when I was diagnosed with breast cancer. (Right, it's all my fault - as my family members (Father, Mother, 3 older Brothers and 2 older Sisters) would tell you: "She never eats right, never goes to bed in time, never listens to us ..." Then in 2007, right around the time when I was diagnosed with recurrence, they shielded the news of 2nd Brother's colon cancer from me. He was the healthiest person in my family, thus my most harsh critic. Since I'd had some training in medical librarianship, I did some digging via the Medline Database. 'Brain, breast, Non-Hodgekins Lymphoma (Mother was diagnosed/treated in 1998), and colon cancer' - and I found a cluster called 'Lynch Syndrome'. Ah Ha! It's in our genes. There're some problems there that cause the cells not able to repair itself properly during cell division.

I felt exonerated!

It's natural for family members to be concerned and want to help any way they can. Oldest Brother is also an amateur fortune-teller ... :) Fortunately I'd had some training while a volunteer counselor, otherwise, it would have really been tough (if not impossible) to handle all the advice/quarrels while trying to face my own challenges.

Be supportive, and be available. Your sister definitely appreciate your standing by her side. I know I did and still do.