Aromasin - I'm stopping my last resort.

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

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.

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.

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.

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.

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 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.

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 -
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!