Breast Cancer Community

Surfside 6,
You do have a very positive attitude and I am glad that you are confident with the decision that you have made for yourself.
My reason for replying concerns your wrist pain. It sounds like me. I have had rheumatoid arthritis since I was 36 (am now 68), but only in my hands and wrists. The pain was awful at first and finally the diagnosis came when they did a sed (sedimentary) rate as part of a blood test.
May I suggest that instead of working through your oncologist, you see a rheumatologist. There are many meds and treatments to keep the disease under control - which mine now is. I get an infusion of Remicade every 6 weeks and am mostly pain free.
Due to my RA history I too refused to take any of the Aromatase Inhibitors as I would not ever want to live with joint pain ever again. So I am taking the post menopausal form of Tamoxifen called Fareston (Toremifene) which acts similar to Tamoxifen in the body. I have been on it for a year without any side effects - no joint or muscular pain and no hot flashes. Just thought I would mention that to you.
Good luck with your hand and please let us know how you are doing.
Judy

I am so glad to hear from you, but so sorry that you have new issues with your hand and arm. I guess the onc can not say whether it might be a result of the meds. My bone pains have definitely lessened in the two months I have been off meds. My shoulder esp. has improved, and I have almost recovered full range of motion. Perhaps a few more weeks without meds will give you the same pain-free benefits I am experiencing.

Being pain-free is definitely a plus in facing each day.
I will be sending prayers for you, esp. knowing that you have so much on your plate with your husband's illness. I must say- you sound like a very strong person. And yes, it is about attitude, which goes a long way in making us feel better and healthier! Judyfam had good info as well; perhaps that will be of help to you.

My family continues to look at me skeptically when the subject of meds comes up. I can only tell them that there are no guarantees--with or without meds. They all recognize that I am in much better spirits these days.


I will think about you on your birthday tomorrow...I wish you a beautiful and happy one, esp. a day with no pain. Please keep in touch and let me know how you are doing.

Thank you for great info. I actually am working with my Primary Care and Orthopedic Dr, as it was originally diagnosed as tendonitis, and just recently as PERHAPS arthritis. I mentioned it to onco. only because I was at my check up and it did cross my mind that it could be related.

If things do not improve by next month's appt with orthopedic, will definitely move on to rhem. Thanks for your concern and prayers

Has anyone heard from the original poster of this thread? I've tried a few times but do not see anything. Can we contact her via a click here or a click there on the original post? This is all new to me

It was so nice to check my e-mail this morning and see you and judyfams input. I appreciate all the info and support. Please be sure to read my reply to judyfam regarding the original poster of this thread, okay?

My husband is not really "sick" for which I am grateful. However, it is a huge babysitting job with his falling, meds and laundry. LOL I am not able to leave him alone at all any more, as I went out the other day and he was on the bathroom floor when I got back.....enuf said. I am lucky to have great friends and neighbors to help with the babysitting. Daughters are too far away. Of course, I am getting lots of flack for a nursing home, but that is a long time down the road, as long as I can stay healthy. Perhaps some home care --- another research project on my to do list

I don't know if I mentioned this regarding my health. I have had fibromyalgia, as you know, for years and thru trial and error, have discovered that Osteo Flex GELATIN works well. They changed the formula and removed the glucosamine because one person in several million had a bad reaction to it. Fortunately, I am a label reader and discovered it fairly soon. I now add a LIQUID glucosamine to my juice and gelatin. If I do not take for 3 days in a row, I have trouble getting out of bed! Otherwise, I do very well. Don't care if it is in my mind or not....it works for me. Actually, that is how I got onto the MED MD site, due to the fibro. Of course, some drs do not believe this is an actually disease, so we are till educating them....they are coming around in the medical field.

Thanks again for your input. I am so pleased for you that your range of motion etc is improving. Wishing you a great week end

I do not recall this individual posting again. And I tried searching for other posts with that sign-in name with zero results. I guess we will have to wait to see if they repost some time in the future.

Blessings.
Rachael

Surprise! I am the original poster for this thread (curiousnk). I really did not know what I was doing when I first posted, and I ended up on two sites. I emailed web md to see if they could combine the two, but was told they could not do it. They suggested that I eliminate one of the posts, which I hate to do because of the loving responses I got on each.

Whenever I start doubting myself and what I am doing by not taking the cancer meds, I reread your ideas and words of support, which encourage and strengthen me. Thank you for keeping my original post in your thoughts.

By the way...HAPPY BIRTHDAY!!!! I hope you have some great plans for today.


Also, Is that Osteo Flex Gelatin like Metamucil? I take that for fiber needs, and that works for me. But if the OFG helps bones as well I am interested in trying that. Too bad the docs consider these sites "complaint" sites. They could learn a lot by reading our posts and learning what truly concerns us.

Hi! I am the original poster for this website---just did not know what I was doing. Sorry about the confusion, but still very grateful for your blessings!

Thanks Rachel....for the effort. As you can see in the next listing, she has been found!

So glad to know you are the person we've been looking for, as was concerned how things were going. And thanks to Rachel also for trying to find out if there had been another listing.

Please keep us in mind and know you were missed.

The OFG is for joint strength etc., not digestive. It used to be called Knox Gelatin, and I guess they were bought out by Osteo Flex, or just discontinued the Knox name. It also has D3 and a couple of other things in it. DO NOT take with coffee....ugh. You'll never drink coffee again. It does not dissolve well, so be forwarned. Every morning I grimmace at the thought, but I know it works!!! Pills do not work as well for older bodies, so this gelatin mixed with juice and the addition of glucosamine liquid seems to do the trick. I will not be without it. It's about $25 a can and it lasts a long time. We have Rite Aid Pharmacy around where I live and I watch their circulars....they sometimes have two for the price of one and I stock up. I am sure other chains have sales also. Remember....it takes about 30 days to kick in, although for me, two weeks showed improvement. Side Bonus: Excellent fingernails! I use the sweetened Glusosamine and it is awfully sweet. If you happen to have diabetic issues, it could be a problem.

I agree with you that the drs. could learn a thing of two if they opened their minds and read these letters. Remember, it took several generations to realize that the patients new their own bodies and were important in the input of information. There is hope....I see some changes.

So glad you are here.... keep us posted on how things are going, ok?

Hi,...so nice to hear from you. Great advice about the OFG. I mix the Metamucil (for digest.) with juice as well, even though it has a citrus-y taste that is not bad when mixed with plain cool water. I have a giant orange tub of Metam., so I will finish that off before I venture out and try this, although the OFG sounds really helpful for bones. I wonder if it will be helpful to my teeth as well, which took quite a beating from the Arimidex.


So...After 8 months of playing the maverick ( MY way: no meds, using diet as my meds!) I am going to go see my onc, who actually placed a call to me asking when I was coming in. That was a surprise--he cares, in a big city like San Antonio! I have an appointment tomorrow (Thurs) for a belated follow-up. It has been 14 months since my bil/mast, and I have no idea what comes next.


I still feel great, lots of energy and feel great physically, even though I know it only takes one left-behind, rotten, rogue cell to ruin everything. I will keep you posted on what happens tomorrow. I feel as though I am my own experiment--and hopefully not my own worst enemy. A little scary, even though I have told myself over and over...there are no guarantees, with or without meds. I intend to just put myself in the Lord's hands and pray for his help and comfort.

It is so nice to know you are out there! I hope you are doing well and that the fibromyalgia is not giving you too much discomfort. Prayers and good wishes heading your way!

We will all be with you aboard Pinkie...You are in our thoughts for a good report...and no bad surprises!

And, yes, that is some caring doc to call!! Can't imagine too many would!

Blessings.
Rachael

Hey, Rachel...Load 'er up! so glad to know you will be along for the ride with me tomorrow! Have not told my family about my appointment...they stress me out when they don't say anything, just look scared with their big round eyes, esp. my sisters.

Oh, I am so excited! I bet you will do really well at the dr. and am anxious to hear how things go. I keep in the back of my mind all the time ---- there are no guarantees with or without meds, so let's do our best and stay strong. Just to be clear on the way your sentence read about waiting to finish the metamucil.......I suspect you can take both (at different times of the day ), as one is for digestive issues and the other is for bones, etc. Hope you get this message in time to ask the dr. what he thinks. I'll be thinking of you - until next time