Reclast?

SpecialK

cakes - my MO also recommended taking Glucosamine/Condroitin for the joint aching, but I have found the most relief from a two-pronged approach - I tried a different manufacturer of letrozole (Femara) and had fewer joint aches, and I also switched to an anti-inflammatory diet.  Often it is the fillers in different makers that cause some of the side effects, so trying different manufacturers of the same drug can mitigate some SE.  The anti-inflammatory diet cuts out foods that typically cause allergies in some people, sensitivity in others.  I no longer eat sugar, dairy, soy, gluten, corn, peanuts, and I stopped eggs for a period of time, but added them back in as they don't seem to bother me.  I have almost no joint pain, my lymphedema improved, and I lost all the chemo/steroid/AI weight - I now weigh less than when I was diagnosed.

smo23915

SpecialK could you share what your diet includes since you have eliminated so many things.

SpecialK

This is the Virgin Diet, I will provide a good info link below. I eat lean, grass-fed or pasture centered protein (beef, pork, chicken, veal), I did add eggs back in but try to eat them from free-range chickens.  Almond or cashew butter, avocados, low-glycemic index (low sugar, high fiber) fruits like apples, some citrus, cherries, all berries, most vegetables other than white potatoes, a lot green leafy vegetables, squash, beans, olives, try to limit tomatoes and carrots - but I do eat them, almond and coconut milk, brown rice, quinoa, and brown rice pasta, olive oil, organic canola oil for cooking. This diet recommends a shake in the morning with vegan protein powder, chia seeds, fruit and either coconut or almond milk.  I  have salads of romaine, sometimes with cabbage, vegetables, and a dressing that does not contain any corn or soy products and no sugar.  Dinners are a protein, vegetables and either brown rice or quinoa, or brown rice pasta.  I was having difficulty taking off the chemo/AI weight with traditional methods of calorie restriction and exercise.  I started this diet in January, had surgery in March, April and May, so was not exercising, and still lost 23 pounds.  There are not really portion controls so I am never hungry and I have adapted to this way of eating.  The difference in joint pain is pretty astounding, and I am happy with the weight loss.

http://www.chewfo.com/diets/the-virgin-diet-by-jj-virgin-2012-what-to-eat-and-foods-to-avoid-food-list/

 

 

smo23915

Wow, thank you so much for the information!

lago

Make your own salad dressing. That way you know what's in it. It doesn't take very long. I know I prefer more vinegar in my dressing and less oil so store bought is never as good as my own.

cakes

SpecialK ~ Your diet sounds like a great plan. I certainly will give it a go. Thanks for taking the time to give us this information.

SpecialK

No problem - I have two friends who just started on it within the last couple of weeks.  It takes some getting used to because you have to be so aware of what you are eating, but it has become a lifestyle change for me - I am not going back.  For me, everything in moderation was not working, and I feel so much better eating this way.  This plan is not for everyone, but it is certainly worth trying to see if it is beneficial.  J. J. Virgin has a book that explains the premise for this diet, and I have read it.  She recently came out with a recipe book, which has lots of helpful recipes and also explains the diet's premise very well and more briefly.  If you want to get a book I would skip the first book and just get the recipe book.  Honestly, you can follow the info in the link above and do just fine though.  I think there is quite a bit of info online as well.

lago

Just checking to let you all know I have no issues with Prolia. Just a little back/shoulder pain the first 24 hours. No problems now.

conniehar

Glad to hear you had such good results Cakes!  Glad to hear you had little to no side effects lago!

I go for my second Reclast on Monday.  I have been vigilant with a weight training/exercise routine this year so I am hoping that all this is helping!

lago

Awesome Connie. 

Just saw my NP/MO yesterday. My NP said I can get my prolia from them at my bi-yearly check ups instead of going the the Rheumatologist. They will do the blood test (calcium) too. It might take 2.5 hours but at least its just 1 trip instead of 3. Figure in travel time for 3 different trips makes it well worth switching over to the 1 long one. I've set it up for 8am.

B123

Lago, so so glad to hear that the prolia is working well for you and no SE! I still have not done anything for my bone issue. Too worried to do an infusion and worried about the cost of prolia. Yet my low back is screaming at me! I was wondering how it went for you, glad it finally happened for you.. I know it was a process! 

lago

I don't know if it's working yet but so no SE from it. I won't get another bone density scan till next October. My last one was in 2013. Now that the osteoperosis is being treated they do it every other year.

conniehar

I had my 2nd Reclast infusion on the 22nd. No side effects at all. I had some flu type symptoms with the first one but really nothing with this second one. Sure hope it is working!

lago

Awesome Connie. I never did get any from Prolia. I'm sure it is

Jupiterjo

Hello! I am scheduled for Reclast on Friday, November 21; I finished chemotherapy last year (November 17, 2013) for stage II invasive ductal breast cancer w/ Lymph node involvement (3). I have been taking Arimidex since Dec. 1, 2013; I now have osteoperosis in my upper neck area, osteopenia in 2 other areas; previously just osteopenia.

I was almost overdosed on chemo after 3 treatments, was hospitilized with "0" white blood count, found new oncologist and am finally back to work for almost 4 months (new job).

I am on the fence about reclast - I still have bone pain but don't want to have my bones deteriorate further; thank you for your insight!

Jupiterjo

This is so good to know! I'm having Reclast infusion on Friday Nov. 21, 2014; glad your experience was positive!

cakes

I haven't been on this site for a while but just wanted to share my Reclast infusion, given Oct 2013, did it's job! I am still vit D deficient but my DEXA numbers had improved enough that I didn't require a dose Oct 2014! Yahoo!

I am so glad to read many of you are having positive Reclast experiences be it the infusion or results.

Hugs,

Cakes

conniehar

A bit late but that is great news, Cakes! 

CarolynVM

I have had diagnosed osteoporosis since I was 43. When I started AI's I was worried about the effect on my bones so my doctor recommended Reclast. Before getting the infusion I visited my doctor who said my teeth were in excellent condition and there shouldn't be any problems with my teeth because of Reclast. Before I got my second annual infusion I had two root canals and my dentists said it had to be a side effect of the Reclast. Since then (a year ago) I have had another root canal, a tooth underneath a permanent bridge rotted away and I have a relatively insecure bridge over the space. I just lost half a tooth but haven't gotten in to the dentist yet. It looks as if a filling fell out but it's such a large loss that I can't imagine being unaware of it falling out. If I could change anything about my cancer journey I would NEVER have gotten the Reclast infusion. NEVER

windingshores

I have had osteoporosis for several years. Bone density does a big drop right after menopause and then the loss slows way down. I gather the AIs do the same thing.

Anyway, some of you might be interested in reading about strontium. It is used in Europe as strontium ranelate. It does both functions of osteoporosis treatment: slows loss and builds new bone.

I tried Forteo but had a respiratory reaction.

Have resisted biphosphanates but am considering again since there might be some effect on cancer recurrence. Have to research that as yet.

If you do go on Reclast or other infused drug, it is possible to have smaller doses 4 times/year rather then one big dose annually.

Kathy044

Here's some current information about Strontium use in Australia. I understand it's use is under review in the UK too.

https://www.tga.gov.au/alert/strontium-ranelate-protos-and-risk-adverse-events.

I found out that I had osteoporosis in the spine when I started on hormone therapy in 2010. I thought at first that I would have to go on Aclasta (Reclast in the US) as I am unable to swallow pills whole but found the older bisphosphate I was prescribed ( etidrondate) didn't have the same esophagus concerns, and I was on that for 2 1/2 yrs, still I was looking forward to approval for Strontium Ranealate in Canada but it didn't happen. I'm on Prolia now but because of the increased jaw necrosis risk the longer on treatment I am thinking the last injection will be it for me.

On my last dexxa after four years on anastrozole my spine number was -2.4 just below the osteoporosis line, however taking margin of error into account (and two wrist fractures) I'm still considered officially to have osteoporosis.

Sorry I don't know why my paragraphs all run together. Hope the the link works ok, if not I will post it separately.

Kathy

Kathy044

Try https://www.tga.gov.au/alert/strontium-ranelate-protos-and-risk-adverse-events

Janett2014

I have osteopenia and had my first yearly Reclast infusion this morning after being on weekly Fosomax for several years. It has been eleven hours since the infusion, and I feel fine. Now if it will just stop or at least slow down the bone loss. My next bone density test will be in December.

BookLady1

Getting 1st (yearly) infusion of Zoledronic Acid tomorrow. Fingers crossed! ✌️❤️ Linda

B123

Hello just wondering how the reclast was going for you? I have to make a choice to either stay on Arimidex and do reclast, fo soma or prolia. Or go on Evista? I don't know what to do but need to stop the bone loss.. So afraid of SE!!

lago

Can't speak to Reclast but I've been doing Prolia for 1.5 years. Never had a SE. Not even after the 1st shot. I was told that for Prolia if you have issues the 1st one is usually the worst…but again no issues.

B123

that's great to hear Lago, thank you! Has your bone density increased? Is i Every 6 months?

lago

It's every 6 months. My hip increased (although it was only osteopenic) spine we are not sure. It was staple but I wasn't on the drug long enough to really judge. Will be doing another bone density scan in October to check.

Everyone is different. My rheumatologist warned me of flu like symptoms and some bone pain especially with the 1st one but I had no issues at all. Now my 1st nuelasta when I was doing chemo wasn't fun but it was doable. Subsequent nuelastsa's not near as bad.