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YADDAYADDA

Embrace your inner monster...
Articles Posted: 82  Links Seeded: 28
Member Since: 11/2008  Last Seen: 5/18/2012

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What Is More Important, Your Quality Of Life or Keeping Cancer At Bay?

Mon Jul 19, 2010 12:04 AM EDT
health, ai, joint-pain, tamoxifen, ra, bone-density, femara, ai-side-effects, aromatase-inhibitor
By YaddaYadda
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The answer to that question depends on so many factors that it can't even be considered without a great deal of thought and research. I began taking Femara two months ago. It is what is known as an aromatase inhibitor, a drug designed to suppress estrogen production in post-menopausal women who have estrogen receptor positive breast cancer. It is wildly successful in increasing the five year survival rate in women with early stage breast cancer...it is 27% more effective than Tamoxifen. Unfortunately, for some women it can cause debilitating side effects. I am one of those women.

I can no longer: walk up a flight of stairs without stopping half-way, open a new jar of pickles, use a can opener, open a twist-top bottle of beer (and that's DAMNED important!), stand without having my legs shake, turn a troublesome doorknob, use a pair of scissors... the list goes on. The pain in my joints and weakness in my limbs is to the point that if I had more hair, I would be ripping it out. I'm only 46, but I feel like an 80 year old with RA. It's ridiculous.

So, the question for me is this... is my quality of life for the next FIVE YEARS more important to me than doing everything possible to prevent a reoccurrance of breast cancer? The answer for ME is... yes. The answer for me is that I will NOT tolerate feeling this way for the next five years. I will NOT tolerate the destruction of my joints and the loss of bone density. I will NOT tolerate the pain. And...I will NOT tolerate a doctor telling me that this drug is for my own good.

For any woman dealing with side effects from taking an AI, specifically Femara, you need to ask yourself some hard questions. You need to be honest with yourself. And you sure as hell need to be selfish. What I mean by that is, do NOT...for the love of God...base your decision on or around others in your life, no matter how much you love them. You have to do what is best for you. And...if you decide that putting up with the side effects for five years is best for you, no one...certainly not I..will judge you. And if you decide to stop the AI and go with something less destructive to your body, do not allow anyone to make you feel guilty.

It is your life, ladies. YOURS!

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  • Public Discussion (90)
YaddaYadda

I'll be breaking the news to my new oncologist on Tuesday. She'll either deal with it or not. I have the distinct feeling, however, that she will work with me to find another alternative.

  • 12 votes
Reply#1 - Mon Jul 19, 2010 12:08 AM EDT
Aimee Franc

That is a hard question. I was diagnosed with Kidney Cancer in 2007. I had a radical nephrectomy that removed my kidney, lymph nodes and adrenal gland. I did not have to be on any medication that made me feel sick to supress the cancer, so I can not answer that. I do know that it took me over a year to recover from my surgery completely and it was very hard to say the least. I do hope that you make the right decision for yourself. Keep fighting. Don't give up.

  • 11 votes
#1.1 - Mon Jul 19, 2010 9:26 AM EDT
dkaz

Yadda, I'd have to be in your shoes to answer that.

  • 8 votes
#1.2 - Mon Jul 19, 2010 4:56 PM EDT
Mike Rupert

YaddaYadda, great piece. You might want to check out - and I highly recommend it - univera.com They have a product called KM. I'm not a distributor or anything, but I and my family have been taking it for years. This isn't another wanna be product. It's incredibly powerful. It oxygenates the blood, and ABSOLUTELY keeps you from becoming run down. There are also many many stories - from people I've been around who've taken it - of it vastly reducing, and also taking away pain - a lot of times, specifically, back pain - after having had the pain for years, even decades. There are many many many other things it helps with. You should - my opinion - go online and research it.

  • 4 votes
#1.3 - Wed Jul 28, 2010 7:03 PM EDT
YaddaYadda

Thanks Mike, I'll definitely check it out!

  • 4 votes
#1.4 - Wed Jul 28, 2010 7:09 PM EDT
Mike Rupert

Great, YaddaYadda :) I couldn't say enough good things about it.

I also was trying to add another comment, but the time expired. I wanted to say to Aimee, I wish you well too! Km is a product that I believe would be beneficial to anyone. Of course we already know that the less you're rundown, the better your immune system functions. KM, again, somehow keeps the body from becoming rundown like it normally does.

  • 4 votes
#1.5 - Wed Jul 28, 2010 7:10 PM EDT
Mike Rupert

Here's a short piece on the man who invented KM:

http://www.aimtobehealthy.com/Matol_karl_Jurak.htm

  • 2 votes
#1.6 - Wed Jul 28, 2010 7:23 PM EDT
Reply
GoldenGateMami_Susi

Both.

  • 8 votes
Reply#2 - Mon Jul 19, 2010 12:23 AM EDT
YaddaYadda

Good answer. But when one intereferes with the other, a decision has to be made as to which is more important.

  • 11 votes
#2.1 - Mon Jul 19, 2010 12:30 AM EDT
GoldenGateMami_Susi

I'm thinking they're both intertwined.

Whether the cancer is terminal or not quality of life becomes so important. As does finding ways to keep the disease and it's affects at bay.

At least with the people I have known going through cancer and other conditions. My dad's Alzeheimer's is progressing it is a day to day quality of life issue as well as finding ways to moderate it's progress.

My dad recently got into the pool and can no longer swim. He taught me to swim. It was one of his passions. It's gone. Now it's become get him into the water for enjoyment in a way that's easy for him physically but still gets that sense of enjoyment he always had.

I can't separate both.

  • 11 votes
#2.2 - Mon Jul 19, 2010 1:39 AM EDT
Tom W.-670850

GGMS, you have a great point and I think that all these questions are personal ones, it's up to the individual and what makes them happy and as healthy as they can be, I am a true believer in people being healthier the happier they are, so it comes down to each persons own choices for me.

Also GGMS, I have a group that you may be interested in joining on Alzheimer's/Dementia/and Memory loss, I did not know about your dad or I would have invited you sooner. If you visit my column you can link to the group form there, my mother has Dementia and the group really helped me to deal with the difficulty I was having spending time with her. She is another case where keeping her active physically has helped her lose weight and be more mobile so she can participate in more things, which in turn helps her health, it's like a circle, each thing contributes to the next.

Yadda, sorry to use your article to invite GGMS but I am having trouble inviting people via the NV system, and I thought others may benefit from it too!

I worked in health care and I can't tell you the number of people I dealt with that had terminal conditions and Dr's or family tried to force some big changes in their life style, for example a 90 year old lady who had smoked all her life, they wanted her to quit, well it was way to late for that to change anything and the smoking was so much a part of her it probably would have killed her to do so. I remember taking her out to smoke, and we would sit and talk about how funny and selfish people can be, wanting loved ones to do an about face at an age where their habits are set in stone.

As to medications I am reminded of the early days of the HIV epidemic and friends who died. Many took AZT, it was pretty much the only drug avialbale to treat the disease. It caused liver problems in many people and some I know stopped taking it because they felt so sick from the medication, oddly enough those people are alive and kicking now, the ones who took the AZT that I know died d/t liver complications. As a good friend told me, if I only live another year, I would rather do so being mildly sick with the disease, then feel as sick as I do with the AZT and live for 10 years!

Aain I belive it's a personal question and everyone should make there own choices! Hope things work out for you and Good Health to All!

T

  • 9 votes
#2.3 - Mon Jul 19, 2010 8:09 AM EDT
YaddaYadda

Yadda, sorry to use your article to invite GGMS but I am having trouble inviting people via the NV system, and I thought others may benefit from it too!

No worries, Tom. I have no problem with that at all.

  • 7 votes
#2.4 - Mon Jul 19, 2010 8:27 AM EDT
GoldenGateMami_Susi

Thanks, T! I appreciate it. And will gladly join. :)

And, Yadda, I think it also becomes a quality of life issue for those around the patient. It takes such a tremendous toll on the family, friends, caregivers. Especially in situations when that circle is very small as in in my case...it's my mom, me and my daughter.

I have read and reread countless of times until it's almost faded and tragically dogearred "Tuesday's With Maury" by Mitch Albom. It's so helpful and knocks me back into reality when it comes to my dad. It's one of my ingredients to keeping my quality of life through it.

I truly loved your article. It's discussions we should all be having without fear with our loved ones. Quality of life, end of life, all in between. I wish for you the best quality of life and health through your struggles.

  • 8 votes
#2.5 - Mon Jul 19, 2010 12:55 PM EDT
Reply
Polka14

Medical treatment is the only thing that can save cancer patients. Encouraging people to resign themselves to death to prevent living with pain is not the right thing to do. I do agree though that cancer patients need to make that decision, even if it is not in their best interests.

  • 4 votes
Reply#3 - Mon Jul 19, 2010 12:27 AM EDT
YaddaYadda

Polka, this is where it gets really sticky for those who are dealing with palliative care only. I met a woman in the chemo room dealing with breast cancer for the 2nd time at age 36. She was going through treatment because she wanted to be around for her kids. That is the decision she felt was best for her. I absolutely respect that. I, personally, would not make that decision because I have no children.

That said, the AI that I'm on right now is to prevent reoccurrance of cancer. I am willing to "roll the dice" so to speak, and change the type of maintenance drug I take. This decision is because the side effects are at the point where it is interfering with my ability to live my life. I am willing to take something less effective in order to correct that.

  • 11 votes
#3.1 - Mon Jul 19, 2010 12:35 AM EDT
YaddaYadda

Polka, sorry I deleted my dupe, which you posted in. Yes, I do believe that there are other alternatives to this particular AI, Femara. The problem is that the side effects mimic rheumatoid arthritis, so many docs will start working up the patient for that rather than look to the drug as the cause.

And I do agree that for someone with active cancer, treating it is most often the best course of action. Unfortunately, however, there are some who have a second and third bout and are deemed to be terminal. In those cases, I think it is very much up to the patient as to whether to fight or just go with pain management.

  • 10 votes
#3.2 - Mon Jul 19, 2010 12:45 AM EDT
Reply
YaddaYaddaDeleted
Dowser

Dear Yadda Yadda, only you can decide whether to do it or not. I don't know what I would do if told I had to have by-pass surgery again. It would be a real hard decision for me-- let me just die, or have a surgery that weakens me for 3 years? I just don't know...

What ever you decide, I will back you 100%. And that's a fact. You must do what is best for you, and no one else!

All my love--

  • 10 votes
Reply#5 - Mon Jul 19, 2010 1:01 AM EDT
YaddaYadda

Thanks Dowser. I had no idea you had bypass surgery! How are you now?

  • 7 votes
#5.1 - Mon Jul 19, 2010 8:30 AM EDT
Dowser

I'm just ducky, Yadda Yadda... I've become used to the new reality so much so that it feels usual. :-) Which I why I don't want to mess with it.

I love you, dear friend, and I'm so sorry that this medicine is making you feel so ill. It may work better for a lot of people, but that doesn't necessarily mean that it works for you. I know this is a struggle, and I'm so very sorry that you are going through it!

Whatever you decide to do, it will be the best decision you could make. I don't blame you, either way! Much love, dear friend!

Nothing can take our inner dignity from us-- despite what is done to our bodies. That is just the shell of the inner spirit. And no one can take that inner spirit away. So, even as you describe your physical weakness-- and I know it is overwhelming-- your spirit is very strong!

((((((((((((((((Yadda Yadda)))))))))))))))) I wish it was in person!

  • 8 votes
#5.2 - Mon Jul 19, 2010 12:16 PM EDT
Reply
MoCowgirl-1193719

(((YaddaYadda)))

You must do what is right for you.

I am sorry to hear what you are going through at this time....and I hope that your doctor can give you some options that allow you to live instead of exist.

I will send positive thoughts your way!

  • 10 votes
Reply#6 - Mon Jul 19, 2010 1:06 AM EDT
YaddaYadda

Thanks MoCowgirl! Your positive thoughts are much appreciated.

  • 7 votes
#6.1 - Mon Jul 19, 2010 8:30 AM EDT
Reply
VerbalBarb

Those choices suck, don't they? I'm sorry your having so much trouble with your AI.

I've been on Arimidex for two years and have experienced some side effects but nothing really debilitating. I feel very fortunate.

Most of the things I was experiencing before I even started taking the medication, simply from aging, I think - some occasional deep aches, some occasional joint pain, a little arthritis in my right hand (from an old injury, actually), hot flashes, some knee problems that always seem to clear up, occasional leg cramps at night. So, I'm not sure what's from the Arimidex and what's just from age (early 60s). The night cramping in the legs and in the feet seems to have increased with the Ameridex, and I now get some occasional cramping in my hands - but all that stays away if I keep up on my calcium and magnesium and stay well hydrated. Bone loss was something my doc and I were dealing with anyway, so I already had something prescribed for that prior to starting the Arimidex.

I just went through some real problems with my right knee and was in tears thinking it was caused by the Arimidex (and I was thinking: great choice- get cancer or be crippled), but my doc swears it was something to do with a temporary muscle problem and not the knee joint itself....I hope he's right (and it has improved greatly with some exercises).

I hope your doc can come up with some suggestions for you. But, in the long run, we all have to measure what is most important to us and make our own decisions.

  • 10 votes
Reply#7 - Mon Jul 19, 2010 1:27 AM EDT
YaddaYadda

Thanks, VB. Sorry to hear about your knee. Hopefully it will continue to get better!

  • 6 votes
#7.1 - Mon Jul 19, 2010 8:32 AM EDT
Reply
One Miscreant

I post out of respect for the difficulty of your decision. I do not have a direct correlation of one drug, one side effect and one decision point. But I have experienced the pain of medication side effects. For me it was statins. The pain was unbearable, but the refrain of "suck it up Nancy it's for your own good", was as loud as any chorus. Not one of them is able to tell me that the statins damaged my muscles, but they are willing to prescribe more drugs, with more side effects. My quality of life has suffered ever since, I became compliant with the orders. If I had to choose between the two I'd say "Quality of Life". There seems to be more dignity, than listening to people who have no idea what it's like. All they know is the damn statistics. Good luck in your difficult decision and I commend you for letting others know there is a choice in this issue.

  • 10 votes
Reply#8 - Mon Jul 19, 2010 2:40 AM EDT
YaddaYadda

Thanks OM. What you're going through right now is the thing I want to avoid. I just cannot see myself being on pain meds for the next five years. I would prefer being coherent!

My quality of life has suffered ever since, I became compliant with the orders.

I'm really sorry to know that you're having to go through this. I hope you find some relief.

  • 8 votes
#8.1 - Mon Jul 19, 2010 8:35 AM EDT
One Miscreant

I understand your frustration and I hope you find peace too. I wish there were a better alternative for you. I know that some of the decisions I have made, were made on behalf of those I love and not necessarily just for my health. Sometimes the look of concern from others is enough to make the "hard choice". There are going to be good and bad days, regardless of the decision. I would keep the pain Rx's handy, just in case it's one of the really bad ones. I

  • 7 votes
#8.2 - Mon Jul 19, 2010 1:14 PM EDT
Reply
Auteur 1536

I think it's both, but I'd be more concerned about how I spent the time in my life while at the same time battling the cancer.

  • 7 votes
Reply#9 - Mon Jul 19, 2010 4:33 AM EDT
sushicat

All of you that have responded are so brave, thank you for your strenght. My family will be dealing with this issue soon enough.

  • 7 votes
Reply#10 - Mon Jul 19, 2010 6:12 AM EDT
YaddaYadda

Oh sushicat, I'm so sorry to hear that. If you have any questions about anything, feel free to email me. I don't know how much I can help, but I can certainly lend an ear.

  • 7 votes
#10.1 - Mon Jul 19, 2010 8:36 AM EDT
Dowser

(((((((((((((((sushicat)))))))))))))))

  • 7 votes
#10.2 - Mon Jul 19, 2010 12:19 PM EDT
sushicat

Thanks Dowser,

I can feel the circle of warmth already. :)

Maybe if we all hold hands and pass this on to yaddaYadda

  • 5 votes
#10.3 - Mon Jul 19, 2010 3:47 PM EDT
Dowser

I think that is an excellent idea! A circle of love and good wishes, among friends!

  • 6 votes
#10.4 - Mon Jul 19, 2010 6:05 PM EDT
Hekofawoman

(holding hands)

  • 6 votes
#10.5 - Mon Jul 19, 2010 10:19 PM EDT
YaddaYadda

...holding hands with sushi, Hek, Dowser, believer, bitey, VB, Lisa, Tom W, E, Auteur, OM, MoC, Polka14, GGM_S, Aimee Franc, dkaz, and all of the rest of my 113 friends on the Vine!!!

  • 9 votes
#10.6 - Mon Jul 19, 2010 10:42 PM EDT
GoldenGateMami_Susi

Good vibes your way always, Yadda!

  • 7 votes
#10.7 - Tue Jul 20, 2010 12:19 AM EDT
Reply
Lisafrequency

(((((yadda yadda)))))

I admire your choice and send you strength and healing energy. I would not ever take chemo no matter what or any of the other drugs for cancer.

I would move to a state where medical marijuana is legal and learn how to make the oil that many people are taking instead of chemo and other drugs. I want to post a link here to the first part of a 7 part video I hope you will watch all 7 parts so you will have more information:

http://www.youtube.com/watch?v=pjhT9282-Tw

  • 8 votes
Reply#11 - Mon Jul 19, 2010 7:28 AM EDT
Tom W.-670850

Lisa, I second the Mary Jane! Works wonders for many, if moving isn't an option there is also Marinol, it is not as great as the Doobie but it can be helpful! (as with everything, different things work better or worse for different people!)

  • 8 votes
#11.1 - Mon Jul 19, 2010 8:12 AM EDT
YaddaYadda

Thanks for the links, Lisa. I'll watch them this evening when I get home. Tom, I've not heard of Marinol. Veddy interestink!

  • 8 votes
#11.2 - Mon Jul 19, 2010 8:37 AM EDT
Tom W.-670850

It's a pill form of the THC in pot, it is an oral pill that you usually take 1 or 2 times a day, it is usually prescribed for appetite, and I know that some ins. co's and the like have tightened the prescribing of it for anythin g but weight loss, but it can help some with nausea or chronic pain, and some other things as well.

  • 7 votes
#11.3 - Mon Jul 19, 2010 11:25 AM EDT
Lisafrequency

It's a pill form of the THC in pot

Just remember that Marinol is a synthetic and not made from the real THC in cannabis. Many peole have some pretty bad side effects from it.

  • 7 votes
#11.4 - Mon Jul 19, 2010 11:58 AM EDT
PaladinUSA (redux)

Many peole have some pretty bad side effects from it.

And you must be able to keep it down once taken.

  • 6 votes
#11.5 - Mon Jul 19, 2010 12:06 PM EDT
Reply
PaladinUSA (redux)

Have been reading the replies here and have refrained from comment out of respect for the notion that -- in the specifics of this instance -- this question seemed posed to the Ladies amongst us.

At this point if you would allow a general observation, may I offer:

There is no expiration date stamped upon us. If there was I would not have made it out of WWII Germany, my 3rd Purple Heart, or several of the crush injuries from the coal mine. We tend to give Doctors the modern equivalent of demi-god.

Your priorities change with time and circumstance. As a young person with family responsibilities requiring my presence it would have been a fool's errand to get between me and the surgeon's table. Now that my sell by date is long past, there is a DNR in place.

Quality of life: Although I function AMA most of the time there are some things that we confuse quality of life with a minor sacrifice -- not drinking booze, consuming dairy products and or caffein, etc.

We are not ever alone. Although the final decision is ours alone it affects those with whom our lives are integrated. As such, may I recommend visiting with friends and family about your decision. They should know that it is not a debate, but rather a discussion. Put it all in written form as necessary in your State of residence. These steps will help remove uncertainty and the attendant angst; help remove the sense of isolation and the notion that you must endure this by yourself.

Bless,

Daniel D

  • 7 votes
Reply#12 - Mon Jul 19, 2010 11:35 AM EDT
Dowser

(((((((((((((((Paladin)))))))))))))))))

  • 6 votes
#12.1 - Mon Jul 19, 2010 12:21 PM EDT
PaladinUSA (redux)

Much needed this morning. Thank you, Dowser.

  • 6 votes
#12.2 - Mon Jul 19, 2010 12:25 PM EDT
Dowser

My pleasure, dear friend! I am very very glad to see you! You are in my prayers!

  • 6 votes
#12.3 - Mon Jul 19, 2010 12:32 PM EDT
PaladinUSA (redux)

:)

  • 6 votes
#12.4 - Mon Jul 19, 2010 12:40 PM EDT
YaddaYadda

Thanks so much for your words, Paladin.

Although I function AMA most of the time...

Does it make your docs crazy or do they just throw their hands up and realize that you're gonna do what you're gonna do?

  • 5 votes
#12.5 - Wed Jul 21, 2010 4:59 PM EDT
PaladinUSA (redux)

After 6+ decades I think they draw straws. I've noticed a high retirement rate too.

Actually, I think they are relieved. I see them only once a year for blood work ups to monitor meds. Pay for my own dental and glasses. Emergency care is covered outside of VA.

I personally rather the overworked medical community spend their resources on the youngest first.

  • 5 votes
#12.6 - Wed Jul 21, 2010 6:10 PM EDT
Reply
Chris in PHX

This question was asked many years ago. They decided that a company/industry has a right to continue to pollute the earth with cancer causing chemicals in the name of profits. They decided it was easier to cure cancer than to make large changes to how we build/live/eat things.

As someone considering med school, this is a challenging topic. As your (future) doctor, damn right I would want you to live just like you did prior to getting sick. You are young, too young to die in my opinion. I am unsure of the regiment for your drug, if it something you are stuck with for the remainder of your life or not. But I do think a nice long talk with your doctor is a good place to start, if he/she does not listen, find another. There are plenty of good doctors and cancer clinics to get better information and care. Find some support groups, they are a great help (I have a child with special needs) and a good place to ask questions.

In the mean time, grin and bear it. Get your hubby/SO to install a beer keg tap (no twisting needed).

  • 6 votes
Reply#13 - Mon Jul 19, 2010 8:07 PM EDT
YaddaYadda

Chris, I think this country and this PLANET needs more people like you! The one thing that I would have to caution you about is this:

Just because someone tells you that a drug is good for you, doesn't mean that it is.

And that means you, as a possible future doc, need to listen to your patients. I get that you want to do everything you can for them. If you didn't want to help people, you wouldn't be thinking about the medical profession. Just don't become so enamored of science that you become disconnected from the people that you're trying to cure.

And, if I had an SO, you bet your bippy that I'd have her rubbin' my feet every day!

Thanks so much for popping in and offering your perspective. It does matter.

  • 7 votes
#13.1 - Mon Jul 19, 2010 10:47 PM EDT
Reply
wwct

Yaddayada, I really feel for the difficulty of your decision.

I read your post earlier this PM and couldn't get it out of my mind.

I'm not entirely sure of your diagnosis, but, perhaps I can give you a further perspecive. I should preface this by saying my husband died of lung cancer in 2002, my father with glioblastoma in 2004, and I am a bit jaded by the medical profession of today.

However, my gr-grandfather was a family doctor, his dau marrried heart specialist and his son was a doctor who started medical insurance in CT. I'm not unfamiliar.

To the point, my mother at age 84 was diagnosed with in situ, non-aggresive, her2 receptor cancer last yr. She had a lumpectomy &, insitu radiation for 5 days. FINE

Then came the recommendations for femera, from the surgeon, the radiologist, and the onocologist. All with Columbia-Presbyterian (darn can't spell). This is "pro-forma"/"sop".

Sister & I started doing reseach; cause MOM thinks DR's are god. See above.

POINT: Statistic show (provided by onocologist via national database that only use statistic to age 70 , high as they go) w/o doing anything further her treatment (surgery/radiation) that she had a 70% chance of dying from other causes, not the recurrance, w/o Femera. With Femera it was reduced by a whole 3%; she'd already outlived the stats !!!

But, my sister's and my concern were exactly what has happen to you, lifestyle. My Mom has all her faculties. She drives,(and I ride, on occasion), maintains her home, pool, goes to meetings, lunch, etc.

She didn't need joint pain, but the protocol demands!!

Hope this makes some sense. This is a very emotional issue/and you. My heart goes out

  • 6 votes
Reply#14 - Mon Jul 19, 2010 8:45 PM EDT
YaddaYadda

Hello wwct! Thanks so much for offering your insight!

One of the things that I have a really difficult time with is that...I truly feel that because this is a drug designed for women...the side effects reported BY women are not taken seriously! I cannot tell you how many websites and posts I've read from women who have had the exact same symptoms that I have now, who were blown off by their docs.

I absolutely will NOT put up with that bull@!$%#! Fortunately for me, my first onco-doc was a female and I feel that made a huge difference in how I was treated during my initial chemo treatments. The 2nd onco-doc (2nd only because I moved to a different state) is also a female and I am hoping that she has done her due diligence when it comes to Femara.

I guess the main thrust of this entire article is that you have GOT to understand what it is that you are taking. Not only that, but you have got to understand how it could affect your body and mind. If it is no good for you...if you think that a drug is destroying more than it is saving...stand up for yourself!

  • 8 votes
#14.1 - Mon Jul 19, 2010 10:56 PM EDT
Reply
Sydney - 5

Yaddayadda,

I'm so very sorry to learn that you're having these health problems.

You are the only one who can decide what is best for you. You are the expert on you.

Never having shared this particular problem, I'm not sure what I'd do. I'd need to decide at the time.

What I do know is that I wish you the very best.

  • 6 votes
Reply#15 - Mon Jul 19, 2010 9:12 PM EDT
YaddaYadda

Never having shared this particular problem, I'm not sure what I'd do. I'd need to decide at the time.

Syd, that is a fact. Until you go through something similar, you never know how you're going to react. Even now, on the upside of this whole thing, if I were to have a reoccurrance, I don't know how I would react. I'd like to think that I'd know...but until you're there, you just can't say.\

Thanks again for stopping by!

  • 8 votes
#15.1 - Mon Jul 19, 2010 11:01 PM EDT
Reply
Soovivers

Yadda - I'm where you are at in treatment anyway. I took Arimidex, then Femora, now Tamoxifen. I've been struggling with trying to take these medications for almost two years now. I really don't know if I can or will go another three years.

It IS a very tough decision to make. On one hand the oncologist says I'll have a higher rate of getting cancer if I stop taking the med. On the other hand I don't have a life now anyway.

So I think I'll quit taking it after my August appt. and blood tests.

We all have to do what is best for ourselves I suppose. I hope you begin to feel better after you stop taking it. Another thing is that when I had radiation I lost a lot (most) of muscle tone and energy. I'm sure that is making this medication side effects worse.

Good luck to you Yadda!

  • 7 votes
Reply#16 - Wed Jul 21, 2010 4:33 PM EDT
YaddaYadda

Hi Soo. Boy, I am SO sorry that you're having such trouble with these drugs. You know, like I said, you have to decide which is better for you. For me, if I end up where you are, I'll stop and take my chances.

I found out yesterday that my new oncologist rocks. She laughed when I said, literally, "I hate Femara with every fiber of my being, NAY!!!...With every ounce of my soul!!" So, we're switching to Aromasin. The reason for that and not Arimidex is because it is too similar to Femara. She thinks I'll have better luck with it.

  • 6 votes
#16.1 - Wed Jul 21, 2010 4:56 PM EDT
VerbalBarb

Soovivers, sorry to hear about what you're going through.

Yadda, I forgot about Aromasin. I hope you find it more tolerable.

  • 6 votes
#16.2 - Wed Jul 21, 2010 5:01 PM EDT
Soovivers

Yadda - I agree that Femora and Arimidex seems the same as far as my body could tell....

I do hope Aromasin works for you. I haven't tried that one. I am glad your oncologist has a sense of humor at least. If my Dr laughed he would probably turn to stone.

Barb - Thanks and back atcha. With the Arimidex I ended up with three broken bones in my right leg last Spring and Summer. It is weak anyway tho...

There's a bunch of us on here I know and most days I try to not talk about it but today is one of those days. It helps to have others to share stories with on here. Thanks!

  • 7 votes
#16.3 - Wed Jul 21, 2010 5:21 PM EDT
Dowser

((((((((((((((Soovie))))))))))))))))

Much love to you, dear Soovie!

  • 7 votes
#16.4 - Wed Jul 21, 2010 9:14 PM EDT
Soovivers

Thanks Dowser. I think of you every day. You are such a giving person (((((Dowser))))).

  • 7 votes
#16.5 - Thu Jul 22, 2010 9:19 AM EDT
Dowser

I think of you, every day, too-- I am NOT stalking you, physically impossible-- but I do watch and see what kind of weather you're going to have... Hope you have sunny skies inside, and whatever you need on the outside! :-)

I love you, dearest Soovie. You are my very own ray of sunshine! :-)

  • 5 votes
#16.6 - Thu Jul 22, 2010 5:33 PM EDT
Reply
Soovivers

You are my very own ray of sunshine

Does that mean I'm hot? lols

(((((Love you Dowser)))))

  • 7 votes
Reply#17 - Fri Jul 23, 2010 8:58 AM EDT
ann in Texas

Great information here, YY. Thank you for sharing and I wish you strength in your battle ahead and in each decision along the way.

  • 4 votes
Reply#18 - Mon Jul 26, 2010 9:51 PM EDT
YaddaYadda

Thanks ann. Much appreciated...

  • 4 votes
#18.1 - Mon Jul 26, 2010 10:00 PM EDT
Reply
Darryl Suskwinaut

Yadda Yadda - So sorry. My wife had stage 3 breast cancer in 2003. She had mastectomy chemo, radiation and the dr. put her on Arimidex. She could only tolerate it for 3 mos. She had chest pains, nausea, bone pain and panic attacks. She tried a few others but had bad side effects with all. She went off of the drugs and started eating healthy and she believes in vitamin D supplements along with others. She is fine today. Her cancer is in remission. She has nueropathy from all the chemo but other than that, ok. I wish you all the best and so does she.

  • 6 votes
Reply#19 - Mon Jul 26, 2010 10:11 PM EDT
YaddaYadda

Wow Darryl, so sorry your wife went through all that. Glad to hear she's doing well though! And glad to know that she stood up for herself and decided to go off the meds. Thanks so much for posting!

  • 4 votes
#19.1 - Mon Jul 26, 2010 10:33 PM EDT
Reply
Sandie Seward

Hi, Yadda, and Everyone, caught your article and thought I would "chip in" with my story.

I was diagnosed last year with Breast Cancer when I was taken into hospital with a Pulmonary Embolism (Blood Clot). Although they dispersed the clot safely (it had reached my right lung), I was then, as I have said, diagnosed with breast cancer. This was brought on by HRT (Hormone Replacement Therapy), and was caused from an excessive build-up of Oestrogen in my system.

A year into living with cancer, my blood has sorted itself out after a course of Clexane injections which, thankfully I no longer need. However, so far I have not been offered any surgery,chemo, or radiotherapy.

I am currently prescribed Aromasin 25mg, and Prednisolone 5mg.

My main reason for posting here is to say that over the past six months I have been experiencing a lot of those symptoms that you have described, lack of energy, joint and bone aches, and a general feeling of weakness and lethargy.

I am due to have a Isotropic Bone Scan early August, to see if the cancer has spread to my bones, or if it's just the start of arthitis.

Neither prospect is very appealing.

  • 4 votes
Reply#20 - Tue Jul 27, 2010 3:29 AM EDT
Dowser

Sandie, you will be in my prayers!

Arthritis is a hard thing to live with, no cure, etc. But it is do-able. I've had it now for 15 years.

  • 5 votes
#20.1 - Tue Jul 27, 2010 7:52 AM EDT
YaddaYadda

Sandie, first let me say that you need to get some new doctors and be much more aggressive with this thing! I simply cannot believe a diagnosis of breast cancer is only being treated with Aromasin and prednisone. The second you were diagnosed you should have undergone a full body MRI or PET/CT scan to determine whether there has been any spread.

Sandie, you need to be a bitch with these docs if you have to!

  • 5 votes
#20.2 - Tue Jul 27, 2010 8:35 AM EDT
VerbalBarb

Sandie, I'm so sorry to hear about what you're going through.

Is there some reason that the docs are holding off on more aggressive cancer treatment? Did the difficulties with your blood necessitate postponing surgery, chemo, etc? I, like Yada, don't understand why more hasn't been done for you.

Yada, I never had a full body scan to determine if my breast cancer had spread anywhere. However, it was quite small (just under 1 centimeter), and there was no node involvement, so the chance of spread was very remote. I recently (2 1/4 years out from surgery) had a blood test for a breast cancer marker that would indicate if there was anything in my body, and I'm glad to say it came back well under the target number (they look for under 30 and I came back with 13).

Sandie, my prayers and thoughts are with you. I hope your scan comes out well.

  • 4 votes
#20.3 - Tue Jul 27, 2010 12:39 PM EDT
YaddaYadda

Hey Barb, I had a scan because we knew even prior to surgery that I had nodes involved. Actually the node was what alerted me to go get things checked out in the first place! If I were just looking at Sandie's symptoms as she has told them, I would almost think that she has lung mets. Which is concerning. I don't know that Sandie is completely up-to-speed on her exact diagnoses, which is also concerning.

  • 5 votes
#20.4 - Tue Jul 27, 2010 3:23 PM EDT
Reply
Sandie Seward

Thanks to you all for your good wishes and kind words. Yadda, I did have a CAT scan last year and my diagnosis seemed "terminal". They were talking about "palliative care" and "hospice visits", none of which has so far happened.

But at no time have I ever been offerered surgery or chemotherapy or anything else other than the drugs I am still currently taking.

As my treatment is courtesy of the British National health Service, none of this surprises me, as it's a known fact that for people in their sixties and older, they just do the minimum because of the cost factor.

It does not matter of course that most of us have paid our contributions all of our working lives!

  • 4 votes
Reply#21 - Tue Jul 27, 2010 4:39 PM EDT
YaddaYadda

So Sandie...what I'm hearing you say is that the doctors have said you are going to die, and therefore they decided not to treat your cancer in order to prolong your life. Although I may not have been popping into the correct sites, I haven't read anything saying that aromasin is for use in terminal patients.

I'm sorry, but In my opinion, that is tantamount to murder. I am so sorry, Sandie, that your government doesn't think you're worth saving. Because you most certainly are!

  • 4 votes
#21.1 - Tue Jul 27, 2010 6:45 PM EDT
Sandie Seward

Thanks, love, actually I think that I was "over-diagnosed" last year (very common apparently with cancer paitents), and for a while I actually believed them, then, a little later on, when things seemed to have "levelled-off" a bit, I realised that I certainly wasn't feeling any worse even though I still didn't feel "right".

And so it has continued, me living with varied aches and pains, (not continuous, thankfully), and having some real "off" days, and some not so bad days.

However, I stand by my statement that health care for cancer and other serious illnesses do depend on one's age when first diagnosed.

  • 3 votes
#21.2 - Wed Jul 28, 2010 7:46 AM EDT
Dowser

I'm sure you're right, Sandie. You will be in my prayers!

One of my grandmother's best friends was diagnosed with breast cancer in 1936, and given 6 months to live. They did a radical mastectomy, which was pretty awful back in those days, and she kept on going. 10 years later, it came back in the other breast, (1946), they did a radical mastectomy and gave her 6 months to live. In 1956, she had uterine cancer. They did a hysterectomy and gave her 6 months to live. In 1966, she was diagnosed with colon cancer. They did a colostomy, gave her 6 months to live, and on she went. She lived to be 98 and died in the 1990's. Every 10 years of so, they'd find something, take it out, and give her 6 months.

You can't always believe their dire predictions-- as obviously, Mary Jack couldn't... The very best of luck to you!

  • 3 votes
#21.3 - Wed Jul 28, 2010 7:51 AM EDT
Sandie Seward

Thanks, Dowser, wow,poor Grandmother.....what a Fighter!!!!!!!!

  • 3 votes
#21.4 - Wed Jul 28, 2010 7:54 AM EDT
Sandie Seward

Sorry, Grandmothers' friend. For some reason I tried to change the post......and it wouldn't let me do so.

  • 3 votes
#21.5 - Wed Jul 28, 2010 7:56 AM EDT
Dowser

I know how that goes! A normal glitch. If it happens again, try clicking on use XHTML Mode instead, make a small change, fix it, then click back on Easy Mode, and it usually will work. Or you can make your change in XHTML mode... Happens to me all the time! :-)

There is always hope, dear Sandie. Always! Mary Jack taught me that!

  • 3 votes
#21.6 - Wed Jul 28, 2010 8:05 AM EDT
Sandie Seward

Thank you, Dowser, Blessings Be!

  • 3 votes
#21.7 - Wed Jul 28, 2010 6:42 PM EDT
Dowser

Thanks, dear Sandie!

(((((((((((((((Sandie)))))))))))))))))

  • 2 votes
#21.8 - Wed Jul 28, 2010 9:42 PM EDT
Reply
anonymous-1077600

Yadda good luck in your fight, I hope by now you have had that talk and found something that will work for you!

  • 2 votes
Reply#22 - Mon Aug 9, 2010 6:08 PM EDT
YaddaYadda

Hi anonymous! Thanks very much. And yes, my oncologist and I did have that talk and she was very cool with it. Understood completely. I'm on something different now, so we'll see how that goes. YAY!

  • 3 votes
#22.1 - Tue Aug 10, 2010 8:48 AM EDT
VerbalBarb

Hi anonymous! Thanks very much. And yes, my oncologist and I did have that talk and she was very cool with it. Understood completely. I'm on something different now, so we'll see how that goes. YAY!

I hope it works out for you!!

  • 3 votes
#22.2 - Tue Aug 10, 2010 2:12 PM EDT
Reply
Sandie Seward

Well, last week I had the Isotopic Bone Scan, and now it's just a matter of waiting to hear the results.

  • 3 votes
Reply#23 - Mon Aug 16, 2010 4:27 AM EDT
YaddaYadda

Keeping my fingers crossed for you, Sandie!

  • 3 votes
#23.1 - Mon Aug 16, 2010 9:30 AM EDT
ann in Texas

Me too, Sandie. Let us know what you hear.

  • 3 votes
#23.2 - Mon Aug 16, 2010 10:08 AM EDT
VerbalBarb

I hope the results are good, Sandie.

  • 3 votes
#23.3 - Mon Aug 16, 2010 2:13 PM EDT
Dowser

Sandie, you're in my prayers! The best of luck to you!

  • 3 votes
#23.4 - Mon Aug 16, 2010 7:06 PM EDT
Sandie Seward

Thank you, everyone for all your kind thoughts and wishes, so far, I have heard nothing from the hospital, so I hope that it's a case of "no news is good news"!

  • 3 votes
#23.5 - Thu Aug 19, 2010 5:52 AM EDT
Reply
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