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To Wendyn

Posted by Pauline on 1/06/04 at 18:54 (141504)

Wendyn,
Don't know if you've been check for Fibromyalgia yet, but in speaking to a friend tonight I found out that she have soft bumps that come and go on her legs.

She was diagnosed with Fibro. years ago and this just started happening recently. Her diagnosis came about as a process of elimination of all other conditions. She said she would go to her Rheumaotolgist weekly and he would run several blood tests each week until everything else was ruled out.

They recently purchased a hot tub and it has helped her especially these sore bumps that come and go.

For what it's worth I pass this information along to you. It may not be your condition at all, but certainly worth trying a hot tub if you have access to one to see how your bump reacts.

Of course she is on other 2 other medications, one is a muscle relaxant the other an anti-inflammatory which she avoids as much as possible to protect her liver. She takes it as needed.

I know you realize I'm not trying to diagnose anything, just asking questions for those that have problems hoping to find some possible answers for them to take to their doctors office.

Re: To Wendyn

wendyn on 1/06/04 at 20:57 (141515)

Thanks for thinking of me Pauline!!!

Actually, when I first heard about Fibromyalgia I thought that the symptoms sounded a lot like mine. The one major symptom (that seems to always be found in firobyalgia) that I don't have is any type of fatigue - ever. My energy levels are good, and are probably way above what many people consider to be normal.

Every doctor I've had has asked about my energy levels - maybe that's why.

Does your friend have the fatigue?

I have a hot tub at my gym...I'm very fond of it. I also have a big soaker tub at home, which I am also very fond of.

Re: To Wendyn

Pauline on 1/07/04 at 12:45 (141574)

Wendyn,
In the beginning, however, since she is now treating for it and getting enough sleep which was a big issue for her, she works a full 8 hr day and does just about everything.

She has been with her current physician for at least 10 years and he has really brought her along back to a reasonable healthy condition.

There were many days in the very beginning when she just could't move, but to see her now she is a different person. No spring chicken either, at 55 and is going back to school to get her Masters degree and as I said works 8 hrs a day. She also writes a weekly article for her local newspaper on healthier living.

I tend to keep people who are looking for solutions to problems in mind when I talk to others. It can't hurt and at times help is provided.

Question for you now. Have you heard of women taking Tamoxifen without having breast cancer? I know there is a large study currently going on which is trying to compare Tamoxifin and Raloxifene as a prevention in healthy women, but I was wondering if you know anyone not in the study who's doctor put her on Tamoxifen because she is considered higher risk.

Re: To Wendyn

wendyn on 1/07/04 at 20:35 (141599)

Pauline - I believe I have heard of that, but I don't know any one who is considered a high risk. Fortunately, no one in my mom's side of the family has ever had it.

Re: To Wendyn

Kathy G on 1/08/04 at 09:51 (141618)

My stupid shoulder/neck is acting up so I'm trying to be good and not type but I couldn't resist checking my email and these boards! I have to respond to the question about Tamoxifen and Raloxifene. My older sister had breast cancer and is currently taking Tamoxifen and has been, thank the Lord, cancer free for three years. Because of that, I read everything I can find about both those drugs and the disease. No, I make that sound like I'm obsessed and I'm not. In fact, I have to keep cautioning my younger sister, who's sure she'll get breast cancer, not to worry about it because although our risk is higher; it's statistically not that much higher than the average woman's.

Anyhow, I have heard of women being put on Tamoxifen if they are considered high risk for breast cancer but there is a whole set of guidelines that have to be followed and I don't think it is currently used by the mainstream medical establishment. I would think that it would be a personal decision, made by an extremely high-risk woman and her doctors. There is, in fact, currently a test study of I think it was 6,000 high risk women who are on low doses of Tamoxifen. They are being studied to see if the Tamoxifen prevents breast cancer from occuring. I think there's a website available on the study and later on, or maybe tomorrow, when hopefully I will feel better, I'll look it up and post it for you, Pauline.

Re: To Wendyn

john h on 1/08/04 at 10:10 (141623)

I think Mary is on a low dose of Tamoxifen.

Re: To Wendyn

Pauline on 1/08/04 at 11:03 (141630)

Kathy,
I think that was an earlier study. There is a North American study known
as the NSABP which involved 13,000 women who were determined to be at VERY HIGH risk for developing breast cancer. Part of the group was given Tamoxifen and the other half a sugar pill. They were followed for 5 years.

The results were significant. After only 4 years of follow-up there were almost twice as many breast cancers in the sugar pill group as in the Tamoxifen group.

Similar studies done in Britain and Italy didn't show such significant results. Both had higher drop out rates and women were allowed to take estrogen if they developed significant menopausal symptoms. They think this might account for the poor results.

The reason I'm interested in this, is because I've been asked to take part in the current study that they are recruiting women for by my Gyn. I believe it involves 80,000 women who will be followed for 5 years, however, they are testing Tamoxifen against Raloxifene. I'd be given one or the other.

She did some calculations and I've come up at higher risk so she suggested the study or that I just go on Tamoxifen for 5 years.

Since Tomoxifen carries some heavy duty risks, I need more information
before I can decide if I want to take it. My thinking right now is, why do the study if I'm at higher risk, when they don't know if Raloxifine will prevent cancer. I might end up wasting 5 valuable years on a drug I don't need.

I know Raloxifine (Evista) is used for bones too, but I've already taken
care of that issue with my Endo. guy. I see him next month so I intend to ask his opinion as well.

Thought I'd throw out the question to see if others might be on either of these medications or were also told they were higher risk.

Not sure what is meant by higher risk or very high risk. It's a numbers game based on questions. Must look into that as well.

Re: Re:Tamoxifen for Pauline

Kathy G on 1/09/04 at 11:24 (141685)

Hi Pauline,

Yes, I must have been talking about the same study. My information says it went on for six years - that's where I got the six from. You're right; it was conducted on 13,000+ women. The newest study is called the STAR study and you can access information on it from at least one website, http://imaginis.com/breasthealth/star/ . I also have a toll free number you can use to call the National Cancer Institute regarding the study. It's 1-800-422-6237.

I agree with you; why become part of a study if one study has already determined that taking the Tamoxifen will, in fact, prevent the cancer from occurring? On the other hand, it's a tough drug and you'd want to be sure that you are high risk. I know that when my sister developed breast cancer, my PCP was able to give me stats that indicated my increased risk for the disease if I had only one sister and no other female relatives who had it and it was relatively low. I remember checking out the stats on line and I think I probably found the most information by starting at the NIH site but I don't remember.

You are facing a tough decision and it's so smart to get as much information as possible before you begin anything. Your doctors should be able to tell you the difference between high risk, very high risk, etc.

It's a very confusing issue and the studies are ongoing. For example, I heard the results of a study talked about on NPR the other day that said that cigarette smoking, especially in the younger years prior to the first pregnancy, resulted in a 30% increase in the chances of developing breast cancer. I thought I'd read about it in the paper butI haven't seen a single thing mentioned on it. I thought they said it was going to be published in the NE Journal of Medicine. It sounded so significant I thought surely I'd read something in the Boston Globe about it but I couldn't find it. I could have missed it, of course.

Good luck on your decision.

Re: To Pauline

Julie on 1/09/04 at 11:55 (141691)

Pauline, I may have missed something, but I can't find anything in your posts in this thread to indicate that you are at high or very high risk of developing breast cancer. If you aren't (and arguably even if you are, because some of the trials have, as you've pointed out, been inconclusive) I would think very carefully about taking a drug for five years as part of a research project.

I took tamoxifen for six years after I had mastectomy surgery for breast cancer, and am glad I did: there's no doubt that it is a good recurrence-avoiding drug, especially in women whose tumours are estrogen-receptive, as mine was. It is now ten years since my diagnosis.

But tamoxifen has some serious side effects (increased risk of endometrial and uterine cancer). These are considered to be 'worth it' in the risk-benefit equation for women who have actually had breast cancer, but perhaps less 'worth it' for women considering taking it as a preventive.

Tamoxifen also has a number of less serious but unpleasant side effects: menopausal symptoms such as hot flushes (that was VERY unpleasant for the first two years) and weight gain (that was unpleasant too).

I'm sure you've done your research and know all this and more, but I thought you might like the perspective of someone who has taken the drug and is glad she did, but wouldn't choose to take it if she didn't absolutely have to.
.

Re: To Pauline

john h on 1/09/04 at 12:06 (141695)

I need to ask Mary but it seems she was on Tamoxifen after breast cancer three years ago and her Doctor took her off it. I will post what she tells me with accuracy later. Her doctor is one of the more prominent experts in this field in the southeast part of the nation. I am thinking he may have come from Sloan Kettering. She did not have to have eith chemo or radiation and was a high risk patient from the get go as her mother had died from breast cancer. Now our daughter lives with this monkey on her back.

Re: To Pauline

john h on 1/09/04 at 12:35 (141698)

I just asked Mary about Tamoxifen. Her doctor who is really a high profile expert in the field took her off Tamoxifen about 2 years after her surgery. As I remember there were some scientific studies that indicated she would be better off without it. I am sure you all know much of this has to do with the type of cancer you have in your breast and location.

Re: To Pauline

Pauline on 1/09/04 at 14:36 (141709)

Julie,
Thank you for the post. The problem I see is what deciding what is meant by high risk, and how much higher am I then the average woman.

I just had my mamogram for 2004 and will return to see the breast surgeon
next month. She is involved in this new study and although I don't have anything going on right now (hoping my last test was ok) and have never had any problem in the past, I'm concerned about taking the drug.

Hot flashes I can probably live with, but it's the blood clots that scare me. My uterus has been removed so that side effect wouldn't affect me.

Because this doctor is involved in the study she may just need more people and decided to ask me. I plan to check with a few more people before I see her so I can ask more about the benefits of taking the drug.

I like Dr. Susan Love's web site. Her take on this is not everyone should be taking it. If you haven't seen her site just use any search engine and type in her name. She used to answer personal questions on line, but because of her increased involvement in research and patients can't do it anymore. Bummer because I thought she was really on top of this subject.

I'll just keep asking questions and then make my decision. I want to check with my Endo as well.

Re: To Pauline

Pauline on 1/09/04 at 14:42 (141710)

It's a scary thing for women John, and the road to the cure seems to be a long way off. It appears to hit everyone whether someone in the family had it or not.

Personally I thought research would have brought us a lot closer to a cure by now although I greatly appreciate all the work they are doing. I think we all want it gone.

Re: To Pauline

Julie on 1/09/04 at 16:04 (141722)

Pauline

You might find this website, on breast cancer risk factors, a help in formulating your decision:

http://bcra.nci.nih.gov/brc/learnmore.htm

May I ask what makes you think you may be at higher than normal risk of developing breast cancer? My own gut feeling is that unless I knew I was at higher than normal risk, I would not take any of the drugs as a preventive. If you suspect that your doctor is simply after numbers, you should be very cautious.

Family history is certainly an indication of high risk, but the biggest risk factor is age: the older you are, the more likely you are to get it. The up side of that is that most breast cancers in older women are less aggressive, i.e. less likely to metastasize, than those in young women. That particular risk factor is unavoidable: we all grow old (and we all die of something or other). Also largely unavoidable is the other risk factor that I personally regard as the next biggest one: environmental pollution (including food adulteration). Obesity, alcohol and smoking appear to be factors too. The best preventive is probably the best possible nutrition, plus regular screening and self-examination. Caught early, many breast cancers can be dealt with with minor surgery and radiotherapy. Though getting breast cancer was a great shock to me, now, ten years on, having worked extensively with other women who have had it, my feeling is that it is not the worst thing that can happen to one.

Yes, I forgot to mention DVT. I don't know how I can have forgotten, because it happened to a good friend of mine, and she nearly died of it. They took her off tamoxifen after that.

I hope you'll share the fruits of your researches with us.
.

Re: To Pauline

Kathy G on 1/09/04 at 17:56 (141726)

Julie,

I signed on to direct Pauline to exactly the same site. Upon taking the risk test, I found out I would have been eligible for the five-year trial as my risk is 2.0%. If I didn't have a sister with breast cancer, I would have a 1.4% chance of getting breast cancer in the next five years. I prefer to look at it as I have a 98% chance of not getting breast cancer. I believe I have enough health problems to worry about right now!

I was wrong in my earlier post; my sister is four years cancer free. Her doctor intends for her to take Tamoxifen for a total of five years. She, too, suffers from the weight gain and the hot flashes, although I believe those have improved some.

Pauline, I found the program I heard that report on: It was 'All Things Considered' on January 6th. For reasons I can't figure out, I can't get it to play for me but the printed blurb says it was going to be printed in the Jan. 7 issue of the Journal of the National Cancer Institute. I'm glad that I didn't imagine it!

Re: To Pauline

wendyn on 1/09/04 at 19:52 (141747)

I tried and mine is 0.2 - which made me feel pretty good. I know that having a baby at 16 (which I don't recommend even with the health benefits) lowers your risk. I've also heard that breastfeeding does too, and I have a lifetime total of about 3 and half years of doing that.

Re: To Wendyn

wendyn on 1/09/04 at 23:24 (141757)

Pauline - what else was happening to your friend...what types of other symptoms does she have?

Re: To Pauline

Julie on 1/10/04 at 01:22 (141760)

Kathy, I think you're absolutely right to regard your 'risk' as being 98% chance of not getting breast cancer. Even with the 1-in-9 (or is it 1-in-8 by now) lifetime risk statistic, most women do NOT get breast cancer, and early detection is giving more of those who do a better prognosis. Taking a drug that caries serious risks and has other known unwanted effects (let's abandon this euphemism 'side' effects!) as a preventive seems to me extremely unwise. The trials may prove me wrong, but for now I think the idea of tamoxifen as a preventive is way over the top.
.

Re: To Wendyn

Pauline on 1/10/04 at 13:34 (141783)

Wendyn,
Lot of body pain especially in joints. Her hips were the worst and of course not being able to sleep added to her fatigue levels. She experienced deep muscle aches similar to flu symptoms. An overall 'not well' feeling. Poor concentration and even memory problems, you name it.

These painful soft tissue bumps apparently have just popped up within this last year.

I remember Brian saying that the Kim who used to post here also had Fibro.
She probably could shed some light on this subject too. I wonder if she is posting again. I haven't seen a Kim, but maybe she's using a different name now.

Re: To Wendyn

wendyn on 1/10/04 at 18:16 (141794)

You are right - Kim had Fibro. I may have talked to her about it at the time, but that was many years ago so I'm not sure.