Survivors who have used only alternative treatments
Comments
-
Three people out of the 20 women in my support group have had jaw necrosis. This goes unreported most of the time because the dentists or other doctors have to take a lot of time fill out the adverse report form.
This is not rare. When the drug post marketing studies are updated let's hope the statistical accuracy is improved.
0 -
I am having dental surgery for an implant, so I am not going to take anything until I am finished. 3 out of 20 is a lot. Matty, can you tell me what symptoms the women in your group had with the jaw necrosis?
0 -
Lynn, the gum retracted and there was bone visible in two of them. The other one had pain below the teeth line caused from the bone rotting from lack of blood supply. The trouble with the bisphosphonates is, the drug stays in your system indefinitely. Ten years after you stop, half of the drug is still there. Jaw necosis is not curable.
You can go to Google Images and see pictures of jaw necrosis. It's kind of gross and painful. That's why people are suing. There isn't enough disclosure to patients. Science Daily had several reports about people's jaw bones getting diseased even when they had taken the drug less than five years.
0 -
I also was advised to have any dental work before using bisphosphonates as I already have osteoporosis. I can't predict a dental problem in the future and as the half-life is ten years and the ONJ is so devastating, I decided not to take the bisphosphonates.
I was taken off arimidex, given tamoxifen and advised to take a calcium complex and vitamin D. I also take strontium citrate, vitamin K2 and use a vibration machine to shake my bones and hopefully strengthen them.
-Sheila-
0 -
Sheila,
What dosages do you take of the strontium and K2? Do you take magnesium also to help absorb the calcium?
thanks!
0 -
Matty, My calcium supps have a fairly complete set of additional minerals including magnesium, boron and vitamin KI. The vitamin K2 is in a dropper bottle that lasts for years as one drop is 1mg and I only need one drop a day. As Vitamin K is a blood thickener, anyone taking anticoagulants should consult with their doctor. I take fish oil to counteract the Vitamin K and tamoxifen.
Vitamin K intake can be increased by eating plenty of greens such as parsley, kale, spinach, Swiss chard, Brussels sprouts, broccoli, cabbage and green beans, also cheese for K2.
Quote: "Lack of Vitamin K2 causes calcium to fail to be deposited in bones where it belongs and to be deposited instead in arteries, aorta, soft tissues including muscle, breast, kidneys and in heel spurs."
The strontium is in 340mg caps, two caps per day required.
Calcium can interfere with the absorption of strontium so it's important to take the strontium separately from any calcium in foods or supps so I take it last thing at night on an empty stomach. Also it's important to take more calcium than strontium so I only take the strontium if I've taken calcium earlier that day.
Strontium becomes part of the bone the same as calcium. Bone mineral density scans will need to be adjusted to take into account the strontium which registers artificially high measurements. The technicians will know what adjustments to make.
Wikipedia quote "Studies have shown that after five years alendronate (Fosamax) may even cause bone loss, while strontium continues to build bone during lifetime use."
Here are some interesting but technical links for anyone interested in reading more.
PEAK K2 - MENATETRANONE - THE "K2" THAT WORKS FOR BONES, HEART AND BRAIN
0 -
I had a mastectomy through love for my child not fear
0 -
This article reminded me of this thread.
"The Science of Why We Don't Believe Science"
http://motherjones.com/politics/2011/03/denial-science-chris-mooney?page=1
0 -
Sheila,
Thank you so much for the strontium and K2 information. This is very helpful. You are always so kind and respectful. I'll print up the information right now.
0 -
Sheila: Thanks a lot, indeed, for this very useful information. I'll keep this in my "favorites".
0 -
Hi Nerida. Here's a report of the AZURE study
Mixed Results for Zometa as a Breast Cancer Treatment
And a study showing that bisphosphonates prolongs life for all aged recipients with osteoporosis, not just BC patients. These would be oral drugs which have no risk of ONJ, not IV.
Extra Five Years Of Life For Osteoporosis Patients Taking Bisphosphonates
Center went on to explain that in a group of women aged over 75, with osteoporotic fractures, one would expect about 50% of them to die over a period of 5 years.
But they found: "Among women in that age group who took bisphosphonates, the death rate dropped to 10%," said Center.
Also, among younger women with osteoporotic fractures, where one might expect about 20 to 25% deaths over five years, there were no deaths at all, she added, explaining their figures showed this was "consistent with about a 5 year survival advantage for people on bisphosphonates".
I doubt that supps would have the same effect for stage IV as bisphosphonates, but that's just a guess.
-Sheila-
0 -
Most cases of onj have involved iv bisphosphonates, but there are cases involving oral drugs, so the risk exists but seems to be slight.
I stppped taking zometa a year ago to give my system room to build new bone. I lift weights as a "supplement" and drink ovaltine together with my daughter. I have never been as muscular as I am now. So far my BMD scans have been great. I figure when they start showing signs of bone loss I will want to try denosumab instead of going back to zometa. I took zometa for 2 and a half years, 2 of those supplemented with weight training. Muscle contraction, even low intensity, affects the same pathways as denosumab does. I had a personal trainer for a year and a half but now go it alone. I never lifted weights before so I needed the guidance of a professional, also for lymphedema issues.
I do now someone who is stage 4 taking femara, weekly oral bisphosphonates and strontium. She is 13 years NED after mets. I don't know though how long she has been taking the strontium or if she ever took zometa.0 -
Nerida - my onc lied to the government so I could have Zometa even though my bone density was pretty good for my age. Anyone taking Arimidex is at risk of osteoporosis, so the Zometa protects the bones. It was also reputed to help prevent recurrence, although I think a recent study maybe have poo pooed that - I'll see if I can find it.
Sue
0 -
WOM
hope you are doing well.
0 -
Thanks for that info Heidihill. I've been looking at information on denosumab but unfortunately they are getting ONJ too, though it's too soon to say if it's better than the other drugs. Also it works by stopping the breakdown of old bone cells by preserving osteoclasts. Exercise works by building new bone so I assume it creates more osteoblasts.
I suspect the reason for ONJ and unusual fractures of the femur are due to the old inferior bone being preserved rather than new strong bone being formed. It's called suppression of bone turnover.
So the stimulation of new bone by weight-bearing exercises or resistance training such as you're doing seems the best way to go. Also vitamin K2 is supposed to work by making new bone as well as preserving old bone. All the other drugs and supps seem to preserve old inferior bone apart from calcium and VitD I assume.
The other factor is; the calcium we're taking may not be getting into the bones as mentioned in my earlier article on vitamin K2. Bear in mind the article is written by a company selling K2 so I don't know how accurate it is.
Lack of Vitamin K2 causes calcium to fail to be deposited in bones where it belongs and to be deposited instead in arteries, aorta, soft tissues including muscle, breast, kidneys and in heel spurs.
A protein called osteocalcin transports calcium to bone. Vitamin K2(menaquinone-7) is used to solidify this calcium into the bone matrix. When Vitamin K2 is lacking the calcium remains in the blood and ends up getting deposited in the walls of arteries and other sites which is very undesirable. Thus Vitamin K2 becomes a critical nutrient for both bone and arteries.
...
Now I'm wondering if this new bone formation is the reason why people who exercise have a lower progression rate. So this may all seem off-topic but it's part of the strategy to lower the chance of mets for those looking for alternatives as our oncologists don't seem interested in stressing the diet and exercise advantage which could cut the risk of death in half according to one study.
http://www.webmd.com/breast-cancer/news/20070608/lifestyle-breast-cancer-survival
-Sheila-
0 -
When I get tired of doing my weekday crunches and free weights, I remind myself of this statistic. And then make sure I do at least one mile of walking week days. Three miles 2-3x per weekday.
That is, once you have completed all active treatment, exercise is the most important thing to be doing other than hormonal therapy if it applies.
I cycle on weekends. I make sure I sign up for something major so I have to train or be dead meat. I do x-country skiing in the winter. I just had my bone density checked and it was NORMAL, even after one year of Arimidex.
I know all of us are focused on cancer, but we also need to think about other fun stuff like heart disease and Type 2 diabetes (which killed my father). Fortunately, exercise helps with all of these.
They haven't been able to separate out diet from exercise (work of Michelle Holmes), as women who exercise generally eat a relatively healthy diet too.
There is a major quality of life thing going on too. If you are out there doing stuff, you feel better, have endorphins going on, and are more agile and flexible. To say nothing about, it's a lot easier to face mirrors and get into clothes.
I need to get rolling, slide into my spandex, and figure out where I want to ride today. Think some exploring of Seattle, as have a cycling weekend east of the Cascades planned for next weekend.
This includes a canyon ride where they close off traffic. Forgot to mention that exercise can be major FUN. - Claire
0 -
You go, Claire! Exercise is what works best for me, too. But even with the workouts, I'm down a little in my bone density. I blame menopause, and will just keep on working out and eating well!
(Have you biked in the San Juans? DH and I will be doing that next month!)
0 -
Hi Anne,
Yes, I have biked the San Juans.....twice. The first time was just as I was being diagnosed. Did that to get my head on straight for what lay ahead. Was wonderfully therapeutic.
Then, last September, I biked with two 30-something friends and their seven year old son. We are still friends. I don't recommend camping, but was low on funds so went that route. We are still friends, even after getting soaked to the skin taking down tents and cycling back to the ferry.
The San Juans are in a rain shadow so are often sunny when the rest of the Puget Sound is otherwise. But usually that means some rain, then sun. Like Ireland. (Seattle is called the Emerald City.)
Have a blast. Wonderful seafood there including local oysters. Wonderful wine and local microbrew. There are also local veggies and fruits.
If you are feeling tired and dragging, you can always do a winery tour. I am bummed that I still haven't seen whales.
Today, I dragged a neighbor out to do an easy 30 mile ride on the Foothills Trail. Was glorious, and relatively uncrowded. Raining tonight, but who cares????
Next weekend, I am heading for Richland to do the 50 mile route of the Inland Empire Century, and then on Sunday, will stop in Yakima to do the Canyon Ride. I have booked into a hotel with a river view and HOT TUB. How great is that???? Plus, I am sure I will sneak in a winery/microbrewery or 2.
Loved my steak dinner. Still need dessert. Rhubarb from the fields I cycled past today. It doesn't get better than that. - Claire
0 -
You're living the good life, Claire! Cycling, wineries, and hot tubs. Does it get better than that??
Snowing here still, so climbing will be indoors. Maybe tomorrow I can get out on my bike...
0 -
BMD is for bone mineral density test, also known as a dexa scan. I just wanted to get a baseline reading as I had never had this test before. I don't know how useful it is since it can't really tell whether you have mostly creaky, old bone or have a lot of healthy, new bone. I'm just assuming that if I exercise with weights, there will be enough new bone. And if you are just starting out with Zometa, it's probably not necessary to do dexa scans since it's taken for granted that Zometa strengthens bone for some time. I had to insist my onc prescribe a test for me.
Nerida, at the point you're in I would try walking daily, if possible, to enhance your immune system. I only started with weights several months after active treatment, although I was still downhill skiing in the winter of my chemo. But ask your doctor whether she can prescribe physiotherapy sessions or if they have supervised exercise sessions for patients at your breast center. A year after I finished treatment I saw that they had started supervised yoga for patients with an attending onc at my center.
Joylieswithin, it's quite possible that healthy bones provide a less favorable environment for cancer. Cancer stem cells compete with normal stem cells for space in bone marrow niches.
0 -
Interesting article, Heidi. I love hearing about advances in our understanding of cancer. Once we understand it well, we can figure out how to stop it!
0 -
That's a great piece of research Heidi. Now I have no excuses not to keep up the exercise.
-Sheila-
0 -
I believe this is why they have rats/mice studies. If they treated one group with a drug and one without a drug and some died will, I dont know about the moral/ethical or legal responsibilities that would be.
I think patients have to be told its a study and they have to sign a waver and bunch of legals papers. Just my thoughts
0 -
Thanks Heidi. I asked this question about 18 months ago when my oncologist was suggesting I sign up for the bisphosphonate study. I ended up not signing up as I couldn't get the math to work beyond a 1% potential benefit.
One of my questions was whether exercise could help prevent metastasis to the bones. I couldn't find anything at that time.
The only reason I didn't x-country ski more than once during chemo is that conditions were terrible. I learned this past winter that at one time it was ice cubes. Not fun. So I cycled.
So really important to keep up walking in addition to cycling. X-country skiing is the best and like a blow torch to the lard. So benefits in addition to preserving bone density.
Which reminds me I need to get moving and pump that iron....... - Claire
0 -
Heidihill:
I needed to ask you abouts and now diagnosed with Zometa and its side effets...
Did you take it as an anticancer or for osteoporosis prevention?
My mum finished her breast cancer therapy before 1.5 year and now diagnosed with osteopenia.
her surgeon recommends for osteoporosis prevention to have oral medication(fosamax,fosavance or actonel) and her oncologist instists for zometa or prolia.
i needed to ask people under this treatment zometa or prolia how they feel and how they found it.....also if any of you had oral medication i needed to ask about your opinion and side effects..
she doesn't know which drugs to follow....
zometa is for osteoporosis prevention and be used also as an anticancer.....the latest though researches showed that is of no use as an anticancer.....
what about prolia?it is a new drug but how we know its side effects and its use as an anticancer and especially for women after breast cancer therapy?what use it has?maybe is too strong for osteopenia and osteoporosis prevention?
0 -
Nastazia - I'm having Zometa every 6 months. My bone density was reasonable before I started Arimidex but my onc wanted me to have it. The first treatment was ok, but the next day I got terrible chest pain which was fixed by taking one steroid tablet. Not heart pain but more in the sternum. The second tx I was absolutely fine. There is only usually a reaction from the first one. The trick is to get them to deliver it slowly apparently, so I insisted on that the second time. It does have an anti recurrence effect in women who are more than 5 years post menopausal. I was borderline for that one, but I do believe that's why my onc wanted me to have it.
Sue
0 -
thank you suepen for the reply....
when did you started zometa? did you were postmenopausal after treatment or before?how long ago?you oncologist insisted on zometa just as an anticancer or for the prevention of osteoporosis?
he didn't mention to you about oral treatment first?
0 -
I know I am late chiming in here but I would like to say something about fear based vs Love based decisions,
My decisions were love based. I love my life, I love being here for my kids, I love the Idea of being here to be a grandma one day, I love myself enough to make some hard decisions that will better my chances to still be here and love love love. It is what life is all about...love When it comes right down to it what else is there?
My decisions have changed over time as my condition manifests in different ways, but I still focus on the love when I make choices. That includes love for others as well as self love.
0 -
Nastazia - I was post menopausal by 4 years when disgnosed. I think my onc has agreed to Zometa for me as a preventative of recurrence as my bone density was actually quite good for my age - 58. I started Zometa after I had finished chemo and rads. I had my first tx in Sept last year (9 months post chemo) and the second in March this year. I will have 2 more 6 months apart. He actually lied to the government over here so I could get it. Usually you have to have already had an osteoporosis fracture to get it here. We never discussed oral bisphononates.0
-
Thank you Susier58 for your reply.
I'm making my own reserach as concerns zometa or the oral treatment because doctors seems to have different opinions...
I really don't know if oral treatment like fosamax is a good choice because a lot of people think that causes fractures...
Did any of you here about Prolia injection?
0
