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Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Do you have any statistics on how many transplant patients actually get cancer?
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@jakedduck1 Leonard, this got by me but I am now trying to go over these posts re. osteoporosis so I finally saw it. I just googled and found this article:
What I do know is that since I had malignant lesions in my original liver I have an MRI yearly to make sure they did not metastasize. If at some point they do find cancer that originated with that the odds of survival are only 11% but I just figure that's not going to happen to me. I always figure that bad things won't happen to me but unfortunately I haven't been right a number of times. My odds have to change at some point.
I’m not very knowledgeable about cancer and know nothing about transplants. I did read that The incidence of cancer in transplant patients is between 15-20% however I don’t know if those figures are accurate. Do you know if the chance of cancer decreases as time goes by? Where did the 11% figure come from? Is that for a specific type of cancer?
@jakedduck1 The 11% came from my oncologist when I asked point-blank but I have confirmed that with online research. I think it’s a case of when it metastasizes it’s not as easy to pinpoint so more difficult to treat than if you had a primary cancer. My husband had prostrate cancer and with it also, if it recurred there would be a much lower chance of being able to eradicate it. It’s been three years on Monday since my transplant so I’m feeling that I’m pretty much out of the woods. Two more MRIs and they will consider it to not be a threat.
Hi Sue 225, Unfortunately, Prolia is not strong enough for me. It prevents further bone loss, but does not replace bone. My T score, at 4.6, is too severe to take Prolia. I must build bone loss and that only can be done, more quickly, through a risky drug like Forteo or Tymlos. Two doctors have recommended Tymlos and I will begin treatment as soon as the nurse shows us how use the injections. Also, I will continue with my functional medicine doctor and his treatment along with his bone supplements. My goal is to stay on Tymlos a short time, not the full 18 mos. Only time will tell. I hope your choice of Prolia will be successful! Osteoporosis is a misunderstood medical condition by doctors and patients alike!
Hello Curlylocks, My Endo has also recommended Forteo or Tymlos for me; however, I am very afraid of the side effects and reports of bone cancer in rats. Can you tell me how it's going for you thus far on one of these drugs? What has your doctor told you about reports of bone cancer? My T score is 4.2.
Hello all, I am new to this group. My Endo has recommended a 2 year course of either Forteo or Tymlos, followed by Reclast infusions. I've been researching Forteo and Tymlos and the warning about bone cancer is frightening! My T score is 4.2. I've previously taken oral bisphosphonates for 7-8 years and also HRT for 5-6 years. I am 62 years old, very petite and small boned, and was an undiagnosed Celiac until age 45. In the past 4 months, I've fractured 2 ribs. I understand Forteo and Tymlos are really the drugs that will build new bone, but the osteosarcoma is especially scaring for me, as I have breast cancer and leukemia in my family. Any feedback or thoughts? Thank you!
@julie2020 I am 65 and also small-boned and slim and 5'2 (I used to be 5'3!). I am also a celiac and was diagnosed in my early 20's. I had osteopenia in my 40's and osteoporosis in my 50's. I have a history of a lot of cancer in my family (sister/breast cancer, mother/breast cancer and non-Hodgkins lymphoma, brother/leukemia). I refused all medication for osteoporosis until the age of 63 when I could no longer ignore the fact that my numbers were continuing to drop although my numbers for hip and spine were in the -3's.
Two years ago my endocrinologist's recommendation was to go on Forteo followed by Prolia. I refused the Forteo because that black box warning about bone cancer frightened me . Also, I have an arrythmia and reading the Forteo info, it mentions palpitations or a racing heart upon injection.
I went with Prolia. I have had three injections. My last bone density showed significant improvement in both the hip and spine. I am due for my fourth injection within the next few weeks. I believe the Prolia has made my irritable bowel worse and has caused worsening constipation issues leading to chronic use of laxatives. Also, after my third injection, I experienced weird chest discomfort and rib cage pressure. I saw my cardiologist and did a stress test (ruled out anything cardiac). I believe it was a reaction to the injection as it started about three to four days after.
I saw my endocrinologist in February/March to discuss stopping Prolia. Now, with Prolia there's no stopping. Once you stop you risk spontaneous vertebral fractures unless you take what is referred to as a relay drug which in my case would be Reclast. I also have upper g.i. issues so oral bisphosphonates like actonel are contraindicated. Because I am small, my doctor said I could probably go for 18 months before having another injection.
I just dont like the fact that Reclast is in your system for 18 months. So, its come down to better to stay with the devil I know? Reclast has a list of unappealing side effects. I fleetingly thought about the doing nothing option but that is too much of a risk.
It would be interesting to hear what your doctor has to say about Prolia.
The problem is that a hip fracture is a scary thought. The other problem is that the drug companies have to come up with better medications.
I will be speaking to my endocrinologist soon to finalize the next step (prolia again or Reclast).
Good luck. You have to be prepared to take a leap of faith.
@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of you may be facing a medication decision for osteoporosis. We, (post-menopausal females and males with special needs) in an attempt to have stronger bones for longer and happier lives, have a lot of things to consider. What is our starting point, how old are we, what fractures have we already had, how active are we, do we have access to an endocrinologist or an institutional/research facility with an interest in this phase of all women's lives?
There are lots of questions. I have an opportunity this week to find out some answers to questions that pop up frequently. Tymlos or Forteo is just one of those questions. My repetitive question is, and then what? I am just completing my first year of Tymlos. No side effects, no worries about getting it anymore after it was back-ordered during the early COVID days. When will I see improvement….how much? Since I have severe allergies to bisphosphonates……there aren't many options. Evenity…..is a new medication. How does it work and for whom will it be beneficial?
Do you or anyone else who is sharing these posts have general or even specific questions right now? For those of you who are getting DEXA scans this spring what are you seeing? Improvements? Better than expected? Lacking in something?
For those who have chosen exercise and modified natural diets, how is that working at this point? What kinds of encouragement do you see or want to see?
I just thought that since I was facing these issues this week, I would find out a bit about what other women are thinking, questioning and worrying about. I am not easily convinced, one way or the other. I am looking, like you, for evidence of improvement. Help me out here……let me know what you would ask.
May you all have happiness and the causes of happiness.
Thanks for your feedback, Sue. My mother took Prolia and ended up in the hospital with severe low blood calcium. So, I'm reluctant to start that drug. Also, my Endo did say what you have commented, that with Prolia there is no stopping it. Doctor favored Reclast over Prolia because she indicated Reclast stays in the body longer once you stop infusions, thereby being able to take off a year or two. I am very active, exercise, eat super healthy, take additional vitamins, and am otherwise healthy. It's just my bones that are in such poor shape! I'm very frustrated by the fact that women with osteoporosis just don't have better options!
@julie2020 I agree with you it is frustrating there isn't any more options. My Dr and I decided to go the naturel.route so will see at my next Dexa scan .
My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My doctor (GP) wants me to go on Prolia, but I'm just not wanting to do that. I react very strongly to all medications. I don't want to add any new ones, so I've decided to go med-free for my osteoporosis. I'll see what my next scan says.
I just think that my grandmother and mother never took medication for their bone loss, so why would I? My grandmother fell and broke her hip when she was 75. She'd had a "humpback" as long as I can remember. She was also lactose intolerant & hated fish, so probably didn't get much calcium. She was born in 1887 and died at 93 after having her 3rd hip replacement. I assume she had bad osteoporosis. My mother and her sisters never had the broken bone issue. My mother died at 78 from pancreatic cancer. So, I'll wait it out.
@gailb, Thank you Gail for telling us about your osteoporosis treatment decision and the background that supports it for you. I cherish my mother's life and her attempts to avoid pain and discomfort. I truly don't think she had a forward-thinking clinician to educate her about osteoporosis. I will always remember the sound of her hip breaking as she turned to give me a hug when I arrived to visit. That is a pretty strong memory. "When we know better, we do better," said Maya Angelou. The goal is to know better and then figure out how to protect our bodies and just do better.
May you be free of suffering and the causes of suffering.
@gailb HI Gail I also have thinning bones My Dr and I talked about it and decided I should increase my calcium, to 1200 mg a day decided morning and night plus D3 5000 mg I also take Boron, Vit K Dr also told me weight bearing exercises so this is my regimen I have a year before next dexa scan hope this helps
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