Arimidex related problems

[Phyllis]

Diagnosed with DCIS, October 2001. Course of treatment: Oral medication (Tamoxifen). Time of treatment: October 15, 2001 to April 26, 2005. Change of treatment: Arimidex. Time of treatment: May 22, 2005 to November 10, 2005 followd by treatment with Femara. November 2005 to February 24, 2006. All medications discontinued February. Nature of problems as follows:
Tendonitis in both thumbs since mid October 2005. Bone pain in right shin. Low back pain frequently. Extreme pain and numbness in both arms from elbows to fingertips. This occurs every night during bed time and only during bedtime. Dizziness, nausea, vomiting, night sweats and hot flashes. My blood pressure and my cholesterol levels both heightened to what I felt to be beyond normal safety limits. Irritability and tenseness. A bone scan done Mar. 2006 indicating a decrease in bone density not of concern in a previous scan of Oct. 2002. These problems have only existed since July 2005. Pain is persistant. I hope this can be of information to you. Phyllis

[Becky Stockwell]

Dear Phyliss.
What is the survival rate if we just have a lumpectomy and no other treatment? I am stage 1 and have ovarian cancer stage 4 in remission.
I love feeing good and do not want arimidex
thanks to anyone who can give me an answer,
Becky

[Judy]

Becky Stockwell wrote:

Dear Phyliss.
What is the survival rate if we just have a lumpectomy and no other treatment? I am stage 1 and have ovarian cancer stage 4 in remission.
I love feeing good and do not want arimidex
thanks to anyone who can give me an answer,
Becky

Dear Becky, I have just completed my 5 year treatment ending with 3 years of arimidex. Never had fatigue or noticeable side effects except hot flashes. Although Phyliss's remark about the tingling hands I was atributing to carpal tunnel and have been wearing hand braces at night to keep me from sleeping on my hands etc. Although I will be anxious to see any changes when arimidex gets out of my system.

[Becky Stockwell]

Dear Phyliss,
thanks to you. I may try it and see..I will never know if I don't. I may be happy like you.

[Becky Stockwell]

oops, I meant JudY for the above post

[Liz]

I have been on Tamoxifen for two years and am now on Arimidex. I will have been on arimidex for nearly a year.I am continuing with it because I am told that the stiffness and pain Ihave in the mornng, or after any period of inactivity will go when I stop the drug.I'd like to hear from anybody who has the same symptoms and/or from anyone who has come off the drug

[Liz]

Dear Phyllis,

I hope that you are feeling better by now. Two hospitals in the UK are researching the reasons for the problems encountered with arimidex - mainly the bone pain. I notice also that Washington university physicians who are treating patients at the Barnes - Jewish Hospital have found that treating patients with high doses of vitamin D makes the pain go away in some cases.
I'm now wondering whether I should stop following the Professor Plant diet (no dairy)as milk is a rich source of vitamin D.The diet is so popular with cancer patients I wonder if we are not excacerbating the whole problem.

[Carol]

Hey everyone, don't give up on the Arimidex. It could save your life. I felt I initially had some joint stiffness and maybe a little pain, but with a good diet and exercise program and some serious relaxation I feel that in 11 months since beginning with Arimidex I have adjusted to it and feel pretty much GREAT again, excepting that I have to work much harder to keep my weight down, and I do need Glucosamine Chondroitin (which I have taken for years, anyway) to keep the joint stiffness at bay. I think it is possible to live with the side effects, and that if you stay active, you can overcome some of the negative side of it. Even with some tolerable challenges, it is a life-saving therapy, and life is always precious even if not exactly what it was BC--before cancer. All good wishes to all of you, Carol

[Kathleen Fairfield Ohio]

PHYLISS

Please see my post to Kathy for my whole miserable history for one and half years with Arimidex. I saw my family doctor in June and was telling him about my pain esp. in my wrists and right thumb. He is also an endocrinologist as well as a internist. After listening to me, he said that he wanted to draw a Vitamen D level. It should be above 35 and mine was 12.5 so he is starting me on prescription vitamen D 50,000 units per week. I have been on Actonel since I began the Arimidex. Since I drink organic milk every day and take three 500mg calcium pills each containing 200 I.U. of Vitamen D, and having dine that for many years, the only explanation I can think of for this low Vitamen D level is a side effect of Arimidex that maybe these guys in the UK and my doc are on to. He thinks the dose of D might help my joint pain. I don't think it will help with the nerve involment that I am having. Personally, I can't wait for my five years to be over with and wish every day some competing drug company would come up with a similar drug with fewer side effects. Everyone I know that is on it would bale immediately. I think what they expect us to put up with is unacceptable but then they know that they have us over a barrel. As I said in my other posting, we are nothing more than a bunch of lab rats for this drug anyway. I am also experiencing depression, mood swings and crying jags. None othis fits my personality. I have always been able to handle the tough times. Right now I am not so tough. It makes it harder that my finace dumped me six days before the wedding because he said my breast cancer could return and "leave him damn poor".

[Pamela Miller]

Has anyone noticed a lack of libido on this medication? Could lack of sexual desire be due to Arimidex or to a post-chemotherapy reaction?

[Cathy-O]

Kathleen, I'm so sorry your fiance turned out to be such a rat. He is already "damn poor" if you know what I mean.. I've been on Arimidex for close to 2 years and had thumb pain right off the bat. In the last few months the joint pain really kicked in all over my body and my right thumb joint is now fused/locked with arthritis. I also have wrist pain in both wrists (diagnosed as De Quervains). My libido is gone, my energy is gone, I wish my stomach was gone too but THAT keeps getter bigger... Basically I feel like I'm 100 years old. I thought I was going crazy until I started finding out that all of these symptoms are quite common to all of us on Arimidex. I'll ask my doc about the vitamin D, thanks for that tip! Good luck to you and to all of us!

[JAYNE SINCLAIR]

HI, GIRLS! I HAVE HAD BOTH BREASTS REMOVED AND (LAST ONE THREE YRS AGO) AND WAS JUST TOLD I SHOULD BE ON ARIMIDEX. I AM 70 YEARS OLD BUT VERY ACTIVE.WALK 3 MILES 3-4 DAYS A WEEK AND HAVEA VERY GOOD LIFE-5 GRANDKIDS THAT I LOVE AND A VERY CLOSE FAMILY. HOWEVER, I AM VERY APPREHENSIVE TO GO ON THIS DRUG. AT MY AGE, I HAVE JOINT PAIN ANYWAY. DO I WANT TO ENHANCE ALL OF THAT? WOULD REALLY LIKE TO HEAR COMMENTS FROM YOU. THANKS

[Mary Ann]

I have been on Arimidex for 10 months. I feel like I'm a 95 year old lady. My hands are completely stiff all through the night, my body aches like I was run over by a truck. I called my doctor this week and told him I quit. It's been 4 days now and I can tell a big difference already! I have had total body/bone pains every night as soon as I lay down. I really can't take it anymore. I would like to find out what my risks are if I never go back on it. I had a mastectomy in June of '05, nothing in the lymph nodes, and the tissue after surgery was clear.

[Deane]

Pamela Miller wrote:

Has anyone noticed a lack of libido on this medication? Could lack of sexual desire be due to Arimidex or to a post-chemotherapy reaction?

Absolutely. I had no chemo and am 3.5 months on Arimidex. Libido is zero, and I have such a horrific case of atrophic vaginitis, it wouldn't matter if I did.

[Deane]

JAYNE SINCLAIR wrote:

HI, GIRLS! I HAVE HAD BOTH BREASTS REMOVED AND (LAST ONE THREE YRS AGO) AND WAS JUST TOLD I SHOULD BE ON ARIMIDEX. I AM 70 YEARS OLD BUT VERY ACTIVE.WALK 3 MILES 3-4 DAYS A WEEK AND HAVEA VERY GOOD LIFE-5 GRANDKIDS THAT I LOVE AND A VERY CLOSE FAMILY. HOWEVER, I AM VERY APPREHENSIVE TO GO ON THIS DRUG. AT MY AGE, I HAVE JOINT PAIN ANYWAY. DO I WANT TO ENHANCE ALL OF THAT? WOULD REALLY LIKE TO HEAR COMMENTS FROM YOU. THANKS

I'm 48, stage 1 IDC with no nodes, no chemo, breast radiaion and 3.5 months on Arimidex. I joke that Arimidex gives you the opportunity to feel as if you're 90 years old just in case the cancer kills you before then. I'm tired, achy, stiff, cold, hands hurt, hip joints and back hurt, depressed, no libido, and have a terrible case of atrophic vaginitis. The fatigue and pain have come on slowly - I really noticed it at about 6 weeks. I've had no nausea, no weight gain so far, and no bad effects on my lipids yet. I honestly don't think I can hang 5 years on this drug. I'm going to have both breast removed next year and will considered stopping after that. You don't say what your disease type/stage is, but I would say try it. You can see from the post people's experiences vary. You can always decide to stop.

[Cathy-O]

JAYNE SINCLAIR wrote:

HI, GIRLS! I HAVE HAD BOTH BREASTS REMOVED AND (LAST ONE THREE YRS AGO) AND WAS JUST TOLD I SHOULD BE ON ARIMIDEX. I AM 70 YEARS OLD BUT VERY ACTIVE.WALK 3 MILES 3-4 DAYS A WEEK AND HAVEA VERY GOOD LIFE-5 GRANDKIDS THAT I LOVE AND A VERY CLOSE FAMILY. HOWEVER, I AM VERY APPREHENSIVE TO GO ON THIS DRUG. AT MY AGE, I HAVE JOINT PAIN ANYWAY. DO I WANT TO ENHANCE ALL OF THAT? WOULD REALLY LIKE TO HEAR COMMENTS FROM YOU. THANKS

Hi Jayne! I'm certainly no doctor but... I'm wondering why your doctor would put you on Arimidex if you have had both breasts removed? I don't see the point but perhaps he/she is concerned about some other type of estrogen loving cancer cropping up. I would just make sure I did my research before going on this medication. I would so love to know what the real percentage is of women who are experiencing these symptoms versus those who are not. My doctor told me that if I didn't have any bone pain in the first 2 months that I wouldn't have any for the duration. I told him about the thumb pain and he said it wasn't the Arimidex.... Do the doctors even know? Sorry I'm not much help but I wish you the best Jayne!

[Muriel F]

JAYNE SINCLAIR wrote:
HI, GIRLS! I HAVE HAD BOTH BREASTS REMOVED AND (LAST ONE THREE YRS AGO) AND WAS JUST TOLD I SHOULD BE ON ARIMIDEX. I AM 70 YEARS OLD BUT VERY ACTIVE.WALK 3 MILES 3-4 DAYS A WEEK AND HAVEA VERY GOOD LIFE-5 GRANDKIDS THAT I LOVE AND A VERY CLOSE FAMILY. HOWEVER, I AM VERY APPREHENSIVE TO GO ON THIS DRUG. AT MY AGE, I HAVE JOINT PAIN ANYWAY. DO I WANT TO ENHANCE ALL OF THAT? WOULD REALLY LIKE TO HEAR COMMENTS FROM YOU. THANKS

Hi Jayne
I am in my early 60's have been on Arimidex for approx 16 months and only side affect was a little bone pain in my shins for the first few weeks. I too walk minimum 2 km every day and have a full and rewarding lifestyle. I certainly don't feel 95 yrs of age. I am a 'virtual secretary' and work from home so I am kept reasonably busy. For 2 or 3 years now I have had some stiffness on rising from sitting for any length of time. I do have a little arthritis in my hips/back/fingers and for the past few months have had tolerably bad pain in my shoulders and have just come to the conclusion that it may be caused by Arimidex. This pain is more uncomfortable when in bed, but leaves me with slight to moderate pain in my shoulders for the rest of the time. One other side affect which I don't necessarily put down to Arimidex and may have been the Tamoxofin I took for 7 years, is chronic vaginal dryness. My cholestrol is good, my blood pressure is now under control by medication, but isn't/wasn't necessarily because of Arimidex. Perhaps I have bene relatively lucky in the lack of side affects experienced and I am prepared to put up with the sore shoulders if Arimidex buys me time to be with a loving and supportive husband and great friends and family. I say go for it Jayne, at least give it a try, you can always come off it.

[Susan]

My sister has been in remission for about 14 years after a double mastectomy. Back then it was also in her lymphnodes. She had months of chemo and has had 14 great years (except for the on-going chemo fog). The last month after experiencing shortness of breath and coughing she had a lung biopsy last Thursday and today was told the breast cancer is back. The doctor started her on Arimidex two days ago and she's back at the hospital right now because her heart is racing. They want to see if it's a reaction to the drug. Maybe it's the pain meds she's still on from the biopsy. Anyway, I'm hoping Arimidez works because we need something that will keep her around for more than a few more months! Darn that cancer.

[neil]

My wife has just undergone breast surgery having prior had chemo and is just about to have radio if any of you wonderfull ladies can give me any advice on diet ie vitimum D as she is taking Arimidex it would make a stupid man very thankfull andc informative

[Linda]

On arimidex for about a year. after 11 mos. bone density dropped 15%, so now on fosamax. Bone pain kicked in mightily a short while ago, fatigue ever present and reminiscent of AC chemo.