My latest scan showed no progression! And diminishing uptake over all in bone mets. Good news! But 2 things that were interesting and questionable were on there. First it said I had 2 healing fractures in my ribs. (News to me) And 2 I had thickening in mastectomy region similar to that produced by radiation. (Which I didn’t have radiation) Anyone with similar findings?
Again good news! Cancer is under control! No pain or limitations! Just odd findings...see Onc next Th...
Blessings to all!
Heather
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Rhwright12
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That is such good news! You must be so relieved and pleased with your news. I never thought I would come to love the words "stable" and "no progression" so much.
I’ve also started taking Algacal for bone health...this one is supposed to regrow bone from the inside out...biophosphonates harden the outside of bones but they can becone brittle and break. I’ve also started weight baring exercise classes...can’t guarantee it’ll work but if I’m going out I’m going out swinging! 😀
I've not heard of Algacal before. Is it an algae supplement? I recently started taking Omega 3 Vegan supplements that are derived from marine algae. They were recommended by my naturopath. They are touted as being rich in DHA and EPA. I didn't want to take cod liver oil, as I don't eat seafood. I have also been doing weight bearing exercises by using an outside gym. I've been doing it since November and I feel great. I hope you are feeling the benefits of it. But now I feel guilty for having a chocolate bar after enjoying a workout today! Urgh! Why can't I crave chocolate on days when I don't work out?!
I’ve not heard if algocal either..I’m now wary of taking anything after the biotin scenario..found out that can influence tumour markers..we need to double check all supplements with our oncologist
I asked mine if I could take Co enzyme 10 and berberine and she said no as she hadn’t heard of those!!.. now I daren’t take them either..ugh
I can understand how you feel, Barb. I called one of my oncology nurses to ask about the vegan supplements I mentioned. She said I didn't need to take them as I can get omega 3 from fish, but I don't eat seafood. So I decided to start taking them. I will bring it up again when I see my oncologist in February.
Yes it’s calcium from algae plus strontium...it rebuilds bone from the inside out vs just hardening the outside like bio phosphates...the Canadian FDA approves it for osteoporosis...
Thanks for your response, Heather. It's interesting to learn that the supplement helps strengthen bones from the inside out. I will see if it's available here in the UK too and ask if I can take that too if it is. I take Adcal D3 (calcium carbonate and vitamin D3) which is a bone strengthener. My oncologist recommended it and then my GP prescribed it, so perhaps that helps offset the damage done by bisphosphonates. I really appreciate how we can help each other out on this site and talk things over like this! My oncologist is going to love me when she sees my notebook again next month! I always have a lot to say to her!
I just did a search and Algaecal is available on Amazon.com, but not Amazon.co.uk. I was also reading in the product information that it's intended for men and women who are aged 45 and older. I'm younger than that, so don't know if it would be a good idea to take it. I will have to save all my questions for my oncologist, I think!
Thanks again for mentioning this supplement, Heather!
Yes it’s mostly for osteoporosis...so those people would be over 45...but those of us in our 40s with this disease know we’re in our own little category...
I got some from Vitamin World...think the brand was Vitamin Code...Algae calcium plus Strontium...need Strontium citrate there’s another Strontium type that begins with an r that they don’t recommend...
Well she said turmeric was ok to take and I make my own golden paste and have done for some years
I think she said not to take berberine and co enzyme 10 because she’d not heard of them (!) so I assume didn’t want to approve me taking those
Why can’t the oncology professionals just have a list of what we can and can’t take with our medications..surely they can collaborate with the drug companies..it’s all so vague
what a great idea, Barb. Half the time my oncologist has not heard of something and, like yours, says rather not but then again, I asked about Ibrance - she had not heard of it but when I found the sunday name she knew all about it! Too bad the pharmaceutical companies can't get the message that a common identification would be great and maybe the costs could come down as all packaging would then be standard!
Unlikely to happen..it’s annoying though because I want to have some control over my care..hate being passive and just taking the pills without question..I’m like that though!!
I take CoQ10 as well...my Onc said never heard of it as well...they don’t track what I tell them I take so I don’t bother with telling them any more...there’s a big fight between big pharma and natural remedies right now and us patients are in the middle like never before! Just my opinion...😀
Great news on your scans!! Like you I hv bone mets only, my late 3 scans show NED as well. I understand you still work so do i. Are you still taking any type of chemo? What are your treatment plans and how often do you see your doc?
I’m on Perjeta and Hercecptin XGeva And Zoladex and Anastrozole...lol 😀 and Frankincense to clear my head from the medicinal fog...I see my Onc every 6 weeks...not to sure why...
I think you and your oncologist are right. Since my diagnosis, if I have had any minors issues it has taken me longer to heal, so I imagine it would be the same with more serious medical procedures that need longer to heal.
I was curling last week and bent down to grab my stone and pulled my IT band only to get it X-rayed and found I had fractured my head of the femur- this is going to take weeks-
That’s really interesting..just goes to show you never totally know what you’re buying..glad my organic turmeric is ok..I’m sure it helps a bit with pain
Barb xx
Great news! Congrats!
Re: the ribs, I had a similar experience when I did my first scans - pre-mets - i.e. they saw 3 broken ribs that had healed. They actually inquired as to whether or not I had suffered abuse, which I appreciate, but I did recall one time a year or so earlier when my stronger-than-he-realized teenaged son gave me a big birthday hug, lifting me off the ground, and, man, that HURT! And it continued to hurt very badly for weeks. At the time I thought that maybe a rib or two had fractured...apparently I was right! Worth the pain, though!
My sis had similar experience with healed rib fractures showing up in scans and she chalked it up to a couple of nasty falls she had taken over the years, road running, which she does for over an hour a day...falls are almost inevitable.
Perhaps the ribs are old injuries? Maybe you can recall some injury that hurt like hell, but eventually healed? I think I read, at the time, that some large portion of people have broken ribs they never knew about...
This happened since my last scans in September...I picked up a client at work...I work with special needs kids...I came in late after a treatment and had 3 adults complaining to me as soon as I entered the room so I picked the kid up in a hurry to get away from the adults and didn’t bend my knees and turned quickly and it hurt but didn’t think anything much about it at the time...I think that was likely culprit..😀
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Got my scan result today
Scan Results on Bone mets
PET scan results not good. Take note of my symptoms
Scan showed what was thought to be bone Mets but were fractures
Tumour markers up again
