bone, muscle, and joint pain

MomG · Regular Joined: 27 Jan 2006 Posts: 37 Location: Va

Ladies, I went back to the onc last week & he took me off the Arimidex & wants me to try the Aromasin..I had did my own experminting for several weeks before my appointment to prove to myself it was the meds. I stopped taking the Arimidex for a week & all the symtpons stopped...digestion was better, not throwing up, no joint pain, vision cleared up, no bloting & swelling. So went back on the Arimidex & it all came back. I stopped the Arimidex the next day after my appointment with onc. & haven't started the Aromasin yet. Karen I can see that the Aromasin does as much or more to you as the Arimidex did to me...

I thought I would wait a week to start taking it & give my system time to get the other out first, but now I'm not so sure. I've got appt. with my family dr the 10th. & he had put me on Lasix, for the swelling, which has started causing cramps in my muscles...and we all know that Lasix takes the potassium levels down, also Zantax for the digestion & FiberLax for my bowels, all because of side effects. I am going to ask the dr if I have to come off any of these meds slowly or can I just quit them before I try the Aromasin to see what side effects it causes. I am like the rest of you, I'm so tired of being tired all the time & not myself & having to take something for the side effects & who know what side effects they will cause us to have to take more meds to get relief & our liver has to process all these meds, so what's it going to do to it down the road?... Rolling Eyes

My chances of the cancer coming back without the meds are better than 70% & if I find out I can't tolorate the Aromasin, then I just might take my chances. I think we all have to do what is best for our bodies. I have always been able to tolerate a high level of pain, but not an on going daily & weekly pain & discomfort. I have gotten to the point of dreading to eat, go to bath room, getting up etc. but I am determained to not let this get the best of me, so as I can't live a half way normal life & try to enjoy it to the fullest as best as I can for as long as I've got breath to keep going on. God made these bodies & he can restore them also....my trust is in him to help me through the good & bad till my time is finished..
Hang in there ladies, together we can all make it.
God Bless.
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MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain & side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

Debra · New User Joined: 04 Aug 2006 Posts: 3

I'm curious as to how they assess the risk of recurrence. My tumor was 1.4cm and was ER and PR positive (97%). The first treatment facility I went to gave me a sheet that showed risk of recurrence with chemo, with hormone therapy and different combinations for the size and grade of my tumor. I just recently stopped the arimidex because I felt like I was 90 years old but my doctor's office is real concerned about it. I told them I wanted to see if the bloating and stiffness was due to the drug before they sent me on a round of tests for that. I've only been off it for 2 days and seem to be sleeping better. They don't want me going longer than a week without something. But if it really makes me feel better, I may quit completely. The risk analysis I got said that for my tumor size and grade and positive for hormones that the risk of recurrence after surgery alone was 25%. Chemo reduced it 7.3% and hormone therapy without chemo would reduce it 9.8%, but combined with chemo was 14.2%. This makes me wonder where the truth is because my cancer doesn't sound too different from yours, MomG. Although my tumor was Ductal Carcinoma, perhaps yours was the other one that is more likely to spread. Did you have radiation and chemo? I had both. Anybody know how to find out what the risk of recurrence is? I sometimes wonder if they make the risk sound worse to frighten us to stay on the drugs! I may be completely wrong about that and I certainly wouldn't want to encourage someone to stop the medication, but I am curious...... especially since quality of life issues may encourage me to quit.
Debra

MomG · Regular Joined: 27 Jan 2006 Posts: 37 Location: Va

Debra, I never had a tumor, just a small mass of fibers at the top of right breast. It was the very slow growing kind, No nodes involved & it was so small they had a hard time finding it in the biopsy after my surgery. The onc in NY said, if I didn't take the Arimidex my chances was better than 70% of it ever coming back in the left breast and would be a very slow growing if it did. The Pathology's first diagnosis was: Infiltrating Ductal Adenocarcinoma & the ER/PR/Her2Nev came back negetive. I didn't have any chemo or radiation because I chose the complete Mastectomy. I am not at high risk and I am cancer free as of now. That's why I would rather take the 70% chance than to suffer with all these side effects & have to take loads of meds to deal with them. I agree with you, that I think the doctors do make it sound worse than it is to push some of these meds. Don't get me wrong, I thank God for all the meds they have to offer us to keep us alive & cancer free, but I do think some of this is unsessary suffering & it does seem that the doctors ignore what we say when we try to tell them about all our side effects & act like we are the only ones having a problem. I have had to go to hospital for test on my bladder & kidneys because they found blood & bacteria in them & also keep getting infections in my sinus & chest since starting the estegron blocker...... Seems my immuine system isn't up to par or something & I am taking all the right vitamins, etc....and 10 lbs. of fluid my body is retaining....so go figure...
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MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain & side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

Debra · New User Joined: 04 Aug 2006 Posts: 3

I am very thankful for the internet or I would think that I was crazy. When I had told my onc about the stiffness and sore joints, he told me that maybe I had arthritis. Although he was honest about Tamoxifen causing weight gain - my previous onc said it didn't and there were studies that proved it.

A woman I knew who had breast cancer told me about a friend of her family's who had breast cancer and it was the lobular type - very likely to reappear in the other breast. She had a double masectemy right away even though it wasn't in the other breast. At the time I found it hard to understand, but now I do. In fact, if it did come back, I think I would seriously consider the same thing. I know it doesn't eliminate the risk completely because I have heard it can infect the tissue on the chest wall, but I do believe there's less chance of recurrence. This is day 3 without Arimidex. The stiffness is gone although my lower legs and feet hurt a bit - I think too much time over the weekend in flip flops! I feel more upbeat, don't know if it's all in my head or not, but so far so good. There is a website called www.adjuvantonline.com that my first onc used to determine chance of relapse. You have to register as a doctor to use it and I don't know what all the variables are - some were on my surgery sheets such as tumor grade and size. But it still looks like my chances of relapse are about less than 20% which my husband isn't happy about. But we'll see how it goes - my onc was talking about putting me on something else. I've already been on Tamoxifen and Arimidex, somehow I doubt anything else is going to be any better side effects wise.
Debra

cassie2rn · New User Joined: 26 May 2009 Posts: 2 Location: NC

I am glad to see other posts of women with lingering pain. I took Tamoxifen for about 6 months then the test showed that I did not metabolize it effectively. So I had a total hysterectomy and then started on Arimidex. I started having severe pain in my feet, like the bones were broken. It was so painful to walk. So I told my oncologist and she swicthed me to Aromasin, it is now the same thing again and I am about fed up with the pain. At least now I know I am not alone. I don't know if I can handle another 4 years of pain. Any suggestions??
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Charity
Diagnosed at 31yo, now 33. Bilateral Mast. Stage 3 IDC, 2+ nodes. Triple +. AC/Taxol/Herceptin and 33 Rad treatments. Now on Aromasin after complete hysterecomy.

Nala6 · New User Joined: 02 Nov 2009 Posts: 1

[quote="ohMary"]One year ago this week I started chemo (AC + Taxol)
I am very depressed because I still have a huge amount of pain in my arms and legs as well as my lower back.

I have been taking Vicodin every day for almost a year. My homeopath wants me to wean off the pain meds, but when I do, I realize that I am in as much pain as ever and I lose hope that I will ever feel good again.

does anyone else have this symptom? I would appreciate hearing from you. I feel like I'm the only one who isn't getting better. A year is a long time.[/quote][quote]I just finished my 6 chemo treatments a month ago. I am still on the Herciptin for another 8 months. I have the same problem as you are. My last chemo treatments, my legs are so swollen can't hardly walk. My Onc. Dr. put me on the water pills. it helps the swollen but now, my legs are very sore. Is worse when I start to get up to walk. So, just to let you know, you're not the only one thats suffering.[/quote]

cassie2rn · New User Joined: 26 May 2009 Posts: 2 Location: NC

I know you are having a lot of pain, but hang in there. It may take a while after chemo ends for the pain to get better and/or go away. I am still having svere pain in my feet, my doctor said it is probably left over neuropathy from the chemo. I stopped my herceptin 1 year ago. She just gave me neurontin, it does not do anything except make me very tired. I don't have any great advice, but there is hope that after a while it will get better.
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Charity
Diagnosed at 31yo, now 33. Bilateral Mast. Stage 3 IDC, 2+ nodes. Triple +. AC/Taxol/Herceptin and 33 Rad treatments. Now on Aromasin after complete hysterecomy.

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