Aromasin - I'm stopping my last resort.

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Alcie
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Date Joined Oct 2009
Total Posts : 4645
   Posted 3/8/2010 10:02 AM (GMT -7)   
I couldn't tolerate Arimidex - allover pain to horrible.  I suffered through Femara for 10 months until life just wasn't worth living, getting up crying with pain every morning despite tramadol, Vicodin, Neurontin and sulindac.  I tried a 3 week "vacation" without any diminution of the pain.  Doc said try Aromasin since I have all my parts and a family history of stroke and have had a heart attack, so Tamoxifen not a great choice.
 
Maybe I should have stopped the Femara for a few days before starting the Aromasin?  After only 5 days on it I couldn't move my hands and fingers because they were locked up, until an hour after my morning pain meds.  So I have stopped it.  It's been a week and the pain is only marginally less, just barely noticeable.
 
Is there any hope?  Should I stay off a month and then start the Aromasin again?  That's what I'm thinking of right now.  But if starting up again makes the hand pain worse I'll need help just to take pain meds!
 
I only had a 1cm IDC.  Node neg. No chemo - oncotype 7.  Radiation gave me axillary cording.  The treatment seems worse than the disease!
Alcie
 
 


barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 3/8/2010 5:40 PM (GMT -7)   
Dear Alcie... I know it must seem that way to you! I do remember saying many times during the time of my surgery and chemo that I had felt fine before I knew I had cancer... it was the treatment that made me feel bad. Truth is, I hadn't felt all that good before I was diagnosed. There were a lot of little things that just weren't right. And it's only in hind sight that I see that. I don't know what to tell you about the Aromasin. What are your doctors telling you? Maybe someone with experience with the side effects you're having will post with suggestions.

Take care!
Hugs...
Bev
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 3/9/2010 9:10 AM (GMT -7)   
Did you have a mastectomy or radiation? Neither of those cause you to ache and hurt all over. Maybe either of those would be an option? My aunt had a lumpectomy and radiation years ago and did just fine. I had a cancer about the size of yours and elected to have a mastectomy and I have never had to have any more treatment for cancer. I have passed thirteen years now. Do you have other health issues? Seeing your posts at 273 makes me think so and maybe the meds havev reacted poorly with other health issues??? Keep searching for an answer, life is worth living well!!!!!! Hugs MK


Alcie
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Date Joined Oct 2009
Total Posts : 4645
   Posted 3/9/2010 9:45 AM (GMT -7)   
MK
Yes, I have other healthissues: fibromyalgia, osteoarthritis in spine only with radiculopathy, 5 month ago operation for stomach shoved into chest from car wreck, which caused severe pain in wrist (continuing) from radial artery line. No mastectomy or chemo, just rads which caused axillary cording (cooked the lymphatic system on left side). I only had old lady IDC, so no reason for mastectomy. Lumpectomy = biopsy. One node - negative, oncotype only 7.

Actually the radiation caused some bad effects that are continuing: I had extreme pain and nausea requiring meds, and my blood counts dropped. This was because it was left side and the rads were hitting the ribs and the stomach. I nearly stopped, probably should have, 2/3 of the way through it. The last day I couldn't even drive myself to treatment, had to ask my DIL. The pain mostly went away after about 3 months, but I still have low white count a year later. I'm told it is likely permanent.

It truly is the aromatase inhibitors causing the increase in pain. It just got worse a little at a time over months while I was on Femara. I keep a detailed journal and that's clearly when pain started getting unmanageable. The stomach operation was healed after 4 months, off Vicodin after a couple of weeks. I have had fibro for years and pain was manageable until starting the estrogen-removing meds. I don't think a fibro-flare would last this long, although it certainly is a co-morbid condition. I didn't have much estrogen to start with, being post-menopausal for 20 years. But nobody measures what we're starting with and there's no dose difference for that or size or weight. I didn't have severe problems with my hands until starting Aromasin.

Now, after a week off Aromasin, I feel no better. My hands still feel like advanced arthritis, but I don't have any there. I take tramadol and neurontin when I get up (crying all the way to the kitchen) and wait for an hour for them to start working. They help with the muscle pain, but not the tendons and joints. I've tried adding Clinoril and Tylenol, but that's not giving additinal relief either.


My fear is that if I go back on the Aromasin I will just continue to get worse. I suspect, from not having any luck with remission of symptoms after stopping, that the pain syndrome is permanent and I will be totally incapacitated if I keep on taking it.
Alcie
 
 


grammy
Regular Member


Date Joined Mar 2004
Total Posts : 340
   Posted 4/17/2010 4:56 AM (GMT -7)   
Alcie,
Have you had your vitamin D checked? I have osteoarthritis in all of my finger joints and my Dr. found my vitamin D to be very low, I thought she was nuts but was willing to try because I could barely bend my fingers. I could not believe how much this helped, I was amazed and could not believe how it took away most all of the pain by just taking vitamin D. It helped with pain in other joints that were not as big an issue as my fingers. I hope this will be of some help to you. The best of luck to you and I will keep you in my prayers, donna

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 4/17/2010 1:26 PM (GMT -7)   
Hi grammy Donna. You must be in my age group. I'm called gwamma, and I think age may be part of my AI intolerance.

Had D checked, came back 18. I started 2000 units D twice a day and it immediately helped with my fibromyalgia pain. But not the bone pains. I've been off all AIs for 6 weeks now and am feeling MUCH better. My hair is even beginning to grow a bit.

I suspect from my own experience and reading posts that it is possible that AIs mostly aggravate already existing arthritis. My pains are definitely located where I have arthritis, although mine is really very minimal. The pain resolves whan I have been off the meds for 5-6 weeks. Most posts I have read with similar complaints are from women over 40 - old enough to have a touch of arthritis which is not causing symptoms.

My tumor markers came back "normal," so my med onc said the AIs will only give me minimal benefit, and it's "up to me" to decide if I want to try again.

I'm looking for opinions from others. Given that my oncotype was only 7, no chemo, did the rads, minimal benefit (but he wouldn't give me a number, although I suspect it's less than 5%), what would you do? It is possible that I would tolerate Femara if I went back on it, because I found that part of my problem was a low D level.
Alcie
 
 


barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 4/18/2010 11:44 AM (GMT -7)   
Hi, Alcie. You know, when you think about what to do, I think quality of life has to be a consideration. You are obviously not enjoying the life you have when you are on the AI's, and if you balance that with "minimal" gain... I was given a choice about AI's 15 years ago (at that time, Tamoxifen), and I chose not to take them because I was offered "minimal benefit" at that time. If I were to have a recurrence, I wouldn't for a minute regret the decision I made, because it was the best choice for me at the time. You bet I would take them for a recurrence, though! So far, knock on wood, I've been fine. It really is a very personal choice, at the level you are at. If I had been told I was limiting my survival odds, I think I would have taken them, regardless of the side effects. You've got to do what is right for you, but I think you've been telling us for awhile now that you don't think this is right for you. You just have to be willing to look back and not regret the decision you make.

It's a tough one!

Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 4/18/2010 6:20 PM (GMT -7)   
Thanks Bev -
Instead of dweling on the "right" decision I will go with the right decision at this time. I feel so much better off the meds! Since I am over 65, have had a solid tumor and a heart attack, my chance of living another 7 years is only 21%, so it might as well be without the horrible crippling AI pain.
Your point of being willing to not regret the decision is well taken. It's the best decision I can make with the information I have available. If it turns out to be wrong, well, that's in the unforseeable future.
It's time to get on with life.
Alcie
 
 


grammy
Regular Member


Date Joined Mar 2004
Total Posts : 340
   Posted 4/22/2010 5:56 PM (GMT -7)   
Alcie,
I don't post much, sorry I didn't get back on here until now. Sounds like you have figured it all out. We all have to make choices that feel right to us, everyones journey is different. Be happy with the choices you have made for yourself, live your life to the fullest and enjoy each day. None of us knows what tomorrow will bring. I wish you the best.
donna

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 4/23/2010 6:31 AM (GMT -7)   
Thanks Donna -
I don't have anything figured out.  I'm going with the onc's words that AIs give me "minimal benefit" for the side effects I have endured the past year.  I will worry for the next couple of years because I have a soft lump on the Ca breast and nobody is telling me whether it is even a concern.  I wonder should I  see my surgeon for an opinion or a biopsy?
 
Worry aside, I am living much better now that the pain from the AIs is receeding.  I had an injection in two of my trigger fingers with only small benefit.   I'm hopeful the next round will work better.
 
Grandchildren are a great excuse to get to the Y and work on their swimming before we open the pool for summer.  With #3 due in 3 weeks I expect to be used to take pressure off their 40-year-old mom.  I remember the torture of being a 38-year-old mom with 3 rowdy boys already at home!  There was never a moment's rest until they were all in school.  Now son #3 is just across a field and the 3-year-old drives the battery jeep with his little brother to my house, and they get me moving.  Today we'll hike up the path to the hilltop in search of morels.
Alcie
 
 


grammy
Regular Member


Date Joined Mar 2004
Total Posts : 340
   Posted 4/23/2010 10:25 AM (GMT -7)   

Alcie, Well you sound positive. I know it's hard to know what to do but living your life to the fullest is a step in the right direction. It sounds like you are stepping up and doing what you feel is best, with all of the pain you have had because of these meds it seems like the good does not out weight the bad. All we can do is hope and pray that all of the info that we collect is correct and that the choices we make from this info is in our best interest. I wish you all the best!

I have 4 grandchildren, they are my greatest joy. Both daughters and and thier families live next door to us. We love it. I am coming up on 6 years cancer free. One of my many, many blessings. Many blessings have come to me in the name of breast cancer.

 


EssPee
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/14/2010 2:41 PM (GMT -7)   
I had severe digestive problems on Arimedex so I was put on Femara. All was ok until 6 months ago when my joint pain was so severe, I thought I'd only be able to walk with a walker. Doctor took me off Femara and it was like a miracle. Within a few weeks, the pain was gone. Now I'm on Aromasin, this is my second month and I'm thinking about getting off. I agree, the quality of my life is worth a risk without these drugs.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 8/14/2010 11:25 PM (GMT -7)   
EssPee -
I read in the Femara website that 1/5th the dose is effective. So why are we forced into a toxic dose if we don't tolerate it? I've read on other forums about women taking it every other day, cutting the pills in half and taking them every other day, all sorts of ways to try to reduce the side effects without going off altogether. I would have done that, but my oncologist didn't allow me that option.

I had the 3 trigger fingers operated in June and am starting to get recovered from that. I suspect the longer-than-normal recovery time may have been a late effect of the aromatase inhibitors. I need a knee operation and am thinking that might take extra long to recover too.

I stopped seeing my medical oncologist and am searching for another one.
Alcie
 
 

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 8/28/2010 6:43 AM (GMT -7)   
Alcie and thread, the lowest dose for Femara in the prescribing information is much lower, it's 4 percent of the pill or 0.01 mg. A pharmacy needs a compounding prescription from a doc to make this dose in a liquid, they need 1-3 pills from your Femara bottle for a 1-3 month supply, and a couple of hours to compound it. It's not expensive. My side effects are much improved at this dose. It's not as effective for BC longevity as the 2.5 mg or 0.5 mg dose, but point out to your doc that it's better than not taking it at all. It'll work for estrogen suppression at even lower doses than 0.01 mg. Sad that there's no research on this subject, since 50% of aromatase inhibitor users get bone or tendon issues, and a lot of them stop the meds because of the toxic side effects.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 8/31/2010 5:46 AM (GMT -7)   
Xen - Thanks for the compounding pharmacy idea! I suppose though, that there has to be an Rx from a physician to get it done. Will a doctor prescribe something that is not an approved dose?

Right now I don't even have a medical oncologist. I stopped going to the really good one I had because he sold out his practice to the big name hospital here and got moved to a dumpy little hospital another hour away from where I was going. Also the big hospital's system of billing is to make the patient pay a "facility fee" for sitting in their chairs, just because the practice/office is within the hospital now. I had no services, no blood drawn, no treatment. My insurance went to bat for me, but I still had to pay it because I was threatened with collection and ruining my credit. I'm supposed to have all the bills sent to the insurance now, because under the contracts the clinics can't charge me this fee, but I am not sure it's going to work. Since ALL the oncology practices are now in one of the two big name hospitals or their outlying clinics, the billing is the same.

So I'm dithering about finding a new oncologist. It's a big pain to have all the records copied and sent to a new one - before I even know if I want stick with him or her.

I'm still suffering from pain and arthritis-like effects, even after 3 trigger finger surgeries, all brought on by these estrogen suppressors. It takes me a couple of hours to get my right hand usable in the morning - stretching in hot water, pain pills ...
Alcie
 
 

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 8/31/2010 12:37 PM (GMT -7)   
Hi Alcie. ( Disclosure: I am not a doctor, do not give medical information, etc, etc, etc, check with your doctor or pharmacist for all medical and pharmaceutical information, blah blah blah.)
All doctors can prescribe what is called "off-label" prescriptions for nonstandard dosages or uses of medications. Some docs are restricted from doing this if they work for a HMO or clinic with rules against it for legal reasons. Off-label prescriptions moves some liability from the pharmaceutical company to the doctor or HMO if something goes very wrong, but it's perfectly legal and quite common.
The simplest way to do this is to contact your old doc by phone and see if he is willing to phone the compounding prescription to a compounding pharmacy near your house. You don't need an office visit for this. Most pharmacies don't compound medications, so you'll need to search your area for one that specializes in compounding. The pharmacy can help the doc with the compounding instructions if he's never done it. It'll specify something like Femara, 0.01 mg, capsule or liquid, once daily, 50 (or 75) days. And you'll need to supply the pharmacy with 2-3 of your prescription Letrozole 2.5 mg tabs. I recommend liquid because you can adjust the dose to find the max dose you can tolerate without crippling your body. Tell him to look at the Femara prescribing information and he'll find that 0.01 mg is an FDA approved dose for full estrogen suppression.
Hope this helps!

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 8/31/2010 12:53 PM (GMT -7)   
Alcie and all: I notice that nightshades (tomato, potato, peppers, eggplant, cayenne, paprika, tabasco) trigger severe arthritis symptoms with the femara, they make the symptoms much worse. There's a theory that nightshades interfere with calcium absorption, they contain a substance that moves calcium out of bone and into soft tissue. If you eat a lot of these vegetables, you might want to try a nightshade-free diet for a few weeks and see if it helps.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4645
   Posted 9/1/2010 8:43 AM (GMT -7)   
Xen -
Thanks for the info. I'll follow up and read the Rx info again. I must have missed the part about the approved dose. This might help a lot of us older women who hardly have measurable estrogen in the first place. I do have a compounding pharmacy nearby.

I eat a little tomato, but none of the other nightshades. I'll have to research that idea some more also. I do have a bit of osteoporosis, which the doctors basically ignore.

The main thing I have in my favor is an oncotype of only 7. If it was higher I would probably accept being a cripple. Well, no , maybe not. But I'd probably be splitting pills or something.

I did find out from my medicare PPO that I should have all bills for "facility fee" sent to them so they can refuse to pay and tell the hospital they can't bill me either. It's in the contract that anyone who accepts the insurance has to abide by the terms they signed!
Alcie
 
 

Xen
New Member


Date Joined May 2010
Total Posts : 8
   Posted 9/1/2010 10:46 AM (GMT -7)   
(sigh) if only there was real health care reform....
An "approved" dose is anything your doctor wants to write on a prescription. The Femara dose for breast cancer is set at 0.5 and 2.5 mg in the manufacturer prescribing information because 0.5 eliminates estrogen to an undetectable level. 2.5 mg was chosen as the dose that maximizes life expectancy. If a couple of extra months of crippled existence is not a priority to you, the 0.5 mg dose gives almost identical side effects and clinical results. 0.1 mg is a dose that fully suppresses estrogen, there's a statistically improved result of total estrogen suppression at 0.5 mg. To say it another way, at 0.1 mg there's a chance of some uncontrolled estrogen leaking through your hands, breasts etc, so I'd guess that this is what improves the side effects but also reduces your life expectancy a little bit as compared to 0.5 or 2.5 mg. (if there's any oncology specialists reading this, please chime in). IMHO if you can tolerate 0.1 mg, it's a world better than doing without the med because you can't tolerate the side effects.
Compounding cost $15 a month to mix it in a refrigerated oil- it's affordable.
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