Life on aromasin
Comments
-
Last week I returned from my regular 6 month visit with my MO. I asked her about the recent research released that claims 7 years on AIs is as good as 10 years (well, 10 years doesn't seem to have any additional benefit). I was hoping I'd be on this drug just another year since I'm at 6 for all my AI treatment right now.
She pointed out that the research was done on women with - nodes. I was disappointed, since I am not liking the increasing joint aches, increased anxiety, and mood swings that Aromasin is bringing. She said I could, of course, stop at any time, but I suppose I'll re-evaluate every time I see her. It's my husband I'm most worried about, since he gets the backsplash of mood swings.
As for anorexia, Bluebird, I have never had that side effect with Aromasin. It didn't affect my weight or appetite in any way. I hope you find the answer!
Claire
0 -
Bluebird, these meds usually cause weight gain, so I'm guessing it's the liver. Everyone is unique though. I would talk to the doctor about it.
0 -
aha - perhaps that is why I am not eating but not losing weight, it cancels out the other.
0 -
Congratulations, Jazzygirl!
0 -
Congratulations JazzyGirl!!! I hope you check in after being off the Aromasin and let us know how you're doing.
Elaine...I TOTALLY understand why you need to take the Aromasin.
I have not gained weight fortunately...in fact, I lost weight. But my appetite has decreased, except for the munchies for stuff I shouldn't be eating.
I may have found a "cure" for the pain for me. It's only been 2 days, but the breast pain and the muscle pain in my butt is negligible today. I made a 3% dilution of cannabis essential oil (from Edens Garden) in hemp seed oil. Rolled that on at bedtime the last 2 nights. I don't know if it's coincidence or real. But I'll take it!
I have an appointment with my GP tomorrow...made the appointment when I was in Florida because I was having bladder pain and burning of the urethra, but had NO other symptoms of a UTI, which I had in January. That seems to have resolved itself on its own, thank goodness, but I think I do have some symptoms of interstitial cystitis I want to discuss with him. And I also want to discuss the piriformis muscle pain I've had since September. It got better through PT and when I went off the Arimidex, but reared its ugly head when I went back on the Aromasin.
Does anyone else have trouble deciding which doctor to call about which symptoms??? I can get in easier to see my GP, but then if it's medicine related, he defers to the MO.
0 -
Hi friends- I am officially off the AIs for a couple days now. I already see the scales have dropped a bit and my feet seem to feel better a bit? Can it happen that fast? I don't know but going to continue to watch. I will continue to share my observations about what is like to come off the medication after five years.
Nancy- I remember when I started on the AIs, I was told the drugs can give you breast pain. But I know it can also be nerve regeneration in areas where you have had surgery or radiation too. I know breast pain can also be a sign of bc. I try to pay attention to if it is in one place or in various places associated with my incisions and rads. I am glad you found something to help your pain.
And yes, it is hard to know where to take your problems as a cancer patient. I usually start out with my PCP because she can rule out other things. I have asthma and there have been a few times I have had problems with that in a way that made me feel like it could be something else. It is easy enough to go to her and get a quick lung x-ray to rule out anything else. My MO told me if I had any sort of deep bone pain that lasted, I needed to come see him. I get bone pain from the AIs and also probably the Prolia shots I take for bone health currently. I had some bloating in my upper abdomen a few years back and was worried something might be going on with my liver. He watches my enzymes closely and said those going up are usually a sign of a liver issue. The bloating, for whatever reason, went away.
0 -
Nancy,
the burning of the urethra and bladder pain could be low estrogen symptoms. Since that is our goal with ER+ cancer I would recommend you look into something to help with dryness and atrophy. I currently use coconut oil. I have used so many OTC creams and things I have bought online and coconut oil seems to work best, not very messy and is natural. As for the IC symptoms, I had those too but I self treated by following the IC elimination diet. IC Elimination Diet and by the time I saw the urologist my bladder was no longer irritated. I was eventually able to add coffee back into my diet but still avoid cranberry, citrus and spicy foods.
0 -
Congratulations, JazzyGirl on finishing the course. I think feeling better can happen that fast. When I went off letrozole, I felt better within two days, and amazingly better within a week. I'm now on extremestane for about a month I think. I'm back to joint aches and stiffness, but overall, I feel better, so far, however, it took 11 mos. for letrozole to really kill me.
Nancy, that's interesting about the piriformis muscle. I'd never heard of it, but is probably what might have affected me last October and was the beginning of the end of letrozole for me. I suddenly had this terrible pain that shot down from my left hip/buttock area down my leg. All I could think is it was sciatica, and maybe it was, but I've now read the piriformis can affect the sciatic nerve.
I was reading in my Anthem account today about medications I'm on or have taken and noticed they have letrozole listed with two !! (serious SEs), but not even one exclamation for extremestane. I think I'll call and ask them about it. Seems very odd to me.
0 -
Jazzygirl: I'm glad you're keeping us informed about your symptoms after going off the meds. Can it be that fast? I'd say yes...I went off for 2 weeks and after a couple days, the symptoms were noticeably less and after 2 weeks, just about totally gone.
Molly: How do you apply the coconut oil? Any special kind you buy? Insert it? I used Replens and it was godawful. Two applications and it burned like heck. It also has a funky smell to it to begin with and then when it exited me, it smelled horrendous. I have ordered something called Premeno which comes from Germany. It was recommended by several people on another forum here on breastcancer.org. I haven't received it yet. Will let you know.
I forgot to tell my PCP about bloating...I have had trouble buttons two pair of pants in the last week that used to be rather loose on me. I have actually lost weight, so I know it's around my middle. I do see my MO next month, so need to make a note to talk to him about it. I will have labs drawn the week before.
My PCP says not likely intersitial cystitis as I would have likely had it all my life. And I haven't had any pain or anything for a month now and I've eaten lots of spicy and citrus. He did a UA on me, called me and said there was no blood....but I got the report online and there was a trace of blood, moderate amount of WBCs, and protein!!! So, I'm like....what the heck??? The microscopic didn't find much in the way of WBCs or RBCS, so maybe that's what he was going by. The protein, however, bothers me.
Blis58: Go online and get the exercises for piriformis muscle stretching. It works really well. If that muscle is inflamed, it can pinch the sciatic nerve. I get pain going down the back of my leg to the back of my knee too. PCP did some motion tests with me and says it's not piriformis muscle syndrome, but sacroiliac joint inflammation...and there's that joint pain we know is a side effect of AIs. He says it can and will irritate the muscles and nerves that surround i
I have to renew my scrip for the exemestane...the copay on it is $165. I only paid $6 for the Arimidex and Femara!!!! I figure I'll take it until I see the MO.
Have a great week everyone!
0 -
Thanks, Nancy, for the suggestion of piriformis muscle stretching exercises.and I'll check them out.
0 -
I have a hard time knowing which doc to call with questions too. I feel like I'm my own nurse navigator. After having cancer, I'm super paranoid about every little symptom and I worry that I'm going to drive my doc crazy! It's pointless to ask my MO any questions. My GP is very kind and says he totally understands this kind of paranoia. I have a patient portal account that lets me email him. I don't know if that's available to everyone else, but it saves me from playing phone tag with the nurse.
0 -
Nancy
"Molly: How do you apply the coconut oil? Any special kind you buy? Insert it? I used Replens and it was godawful. Two applications and it burned like heck. It also has a funky smell to it to begin with and then when it exited me, it smelled horrendous. I have ordered something called Premeno which comes from Germany. It was recommended by several people on another forum here on breastcancer.org. I haven't received it yet. Will let you know."
I used organic, refined coconut oil. I usually buy from Sprouts because it is affordable. I take a chunk and let it melt inside and then rub it on the outside as well. I usually keep it in the shower. I use extra right before intercourse. Let me know how the Premeno is. I have it on my list. Replens is awful. Gave me a yeast infection! I miss my Estrace cream.
0 -
Nancy- You can also buy coconut oil tablets (supplement section in the store) and use an applicator to put them in, they will dissolve and the amount is about right in those. Vitamin E can also work similarly.
0 -
Just finished chemo and soon will be starting on an AI. Doc recommended anastrozole but, after researching, I've decided I'd rather start on the steroidal Aromasin because I handle steroids well and it seems to have fewer SEs. If can handle that for 3mos, could switch to identical generic.
Through my insurance, Aromasin would cost $900/mo. Through Canada, only $200/mo. Does anyone order through an on-line Canada pharmacy and receive the drug through Canada? What company?
How can one find out the manufacturer of the generic at, say, CVS or Walmart, etc? I might be interested in taking exemestane manufactured by Greenstone LLC, which seems to be the same formulation as Aromasin.
Thank you for your input!
Laura
0 -
Laura, my Rx was filled at Walgreens and it is from Greenstone.
0 -
I have the patient portal. It's called My Chart. I've used it a few times, but feel like I'm bugging the doctor too much that way also.
The Premeno arrived today. It doesn't come with an applicator. 😮 Used the first one tonight. Initial cooling sensation. Now it's ok, but I do feel like it is melting and coming out, so it's a good idea to take it at bedtime.
Today is the one year anniversary of getting the call from the doctor and my journey had begun. A lot has happened in a year.
0 -
Hi ladies- just popping in with an update. I am one week out from going off the AIs after five years. I found that my feet (which have been an issues for me from day one) were better within two days and continue to feel better all the time. I also had some major issues with degradation in my handwriting the past few years and was worried maybe something was changing in my brain (we have a history of early onset Alsheimers in our family). But realized in the past couple years it was probably just the stiffness in my hands from the AIs and do see more improvement now. I can type relatively easily, but my hand writing has been messy.
Two other experiences since coming off the drugs include a few more headaches and ALOT more hot flashes. I remember when I was coming into menopause, those were common and then when I had to have a hysterectomy around the same time as my bc dx (long story for another time), those hot flashes were in full force. So I guess I should not be surprised that this would occur as a bit of estrogen comes back on line in the same way it did as it was going away.
I think I read on line that the majority of the changes felt coming off the drugs are the first couple weeks. More changes can come with time. I am watching my blood sugar and weight issues too as those went off the rails with the AIs.
I have to share something eye rolling a couple people said to me when I shared I was to my 5 years. Several people said "wow, that five years went fast." Only for you my friends, only for you.....
Thanks for all the good wishes and will be back again with more updates soon!
0 -
Thanks for the update Jazzygirl. I hope things continue to improve for you. Yeah.. A fast five years... NOT.
I thought I was feeling better, but the last two days have been awful. Such pain in my thighs, hips, shoulders and stiff hands. And fatigue like when I was having radiation. I can't accomplish anything. The least little exertion wears me out. I went to yoga yesterday and the easiest of poses and stretches were so difficult and painful.
I worry about blood sugar too. Mine has been borderline for a couple of years. My last bloodwork it was up more. I have bloodwork again in a month. Anyone else notice their BP up on these meds? I've always been low normal and now I'm 135 over 72.
On a good note, I'm sleeping well the last few nights. I'm taking a full hydroxyzine tablet instead of half. Just enough that if I wake during the night I can get back to sleep without much issue. Getting 7.5 hours instead of 5.5.
3 days on the Premeno. Not sure what to think. It burns. And I made the mistake of not wearing undies and pantiliner and woke up last night with stuff leaking all over me and the bed! And hopefully this isn't too much information, but I wiped after going potty and there was a huge glob of yellow mucus. So is this the "moisture" it's supposed to be stimulating?
I think I've said too much!!! But it feels good to have somewhere to go to discuss this with women who understand.
0 -
Jazzygirl--I love you "old timers" providing the updates when you're out the other side. I'm still in the preliminary stages (lumpectomy next week, followed by more rads), and know an AI will be recommended and the potential SEs scare the bejeesus out of me.
Nancy--no such thing as TMI on this site!! Where else will we hear the more intimate details of things we all have questions about!
0 -
About blood sugar and the AIs, my MO told me it was the cholesterol that might go up with my taking the AIs, but in fact, it was my blood sugar hit the line with diabetes six months after I was on the AIs in 2013. My PCP had run an A1C on me the summer before and was in the "pre-diabetic" zone. I believe the A1C was around 6.0.
By the following summer, my A1C hit the line with diabetes at 6.5. I immediate went cold turkey on sugar and stopped eating any deserts with sugar. My PCP put me on metformin and the A1C was checked several times a year and was anywhere between 6.4-6.7 and when it was going up over 6.5, I went up on metformin. When I went to see the endocrinologist in 2015 to work on my weight issues, we started finally getting that A1C down with some medication adjustments, and that also helped my weight.
My AIC the past year or so had stayed at 5.7 (the line between normal and borderline diabetic). I still take metformin plus something called Trulicity shots to keep the sugars in check. I will have my next blood work in May and visit with the endocrinologist in early June. My hope is that I can come off the Trulicity as sugars drop as well as drop my metformin from 1000-500 mg as we go along. I expect I will also remain on a low dose of metformin for the longer term. My PCP and endocrinologist said I was probably at risk for diabetes given some family history, but they also believe the AIs threw me in to it.
I found some articles through time that suggest there is some evidence of cancer treatment for those who have chemo or take the adjuvant therapies with the blockers. It may affect our endocrin system for the longer term. I have talked to more than a couple women here whose sugars went up and who got put on metformin as well. So I do encourage you to watch your blood sugars friends.
0 -
That's scary about the diabetes. I'm such a sugarholic! I'm trying to make healthier desserts. Today made a paleo pumpkin pudding and no bake energy bites. Both have honey in them. But that's still sugar. I have bloodwork scheduled in a month.
My MO said that the latest studies show that AIs don't cause elevated cholesterol levels. He doesn't even test for it. I have had a 260 cholesterol for years. No amount of exercise or dieting changes it. I refuse to go on statins. Those cause muscle pain and weakness too!
0 -
I'm with you on the statins, Nancy. I've had high cholesterol for years, too, and PCP wants to prescribe me statins. I told her she can prescribe, but I'm not taking them. I'd rather work on my diet and exercise. I don't need any more drugs screwing up my QOL with SEs, and from what I've read, I'm not so sure they really help. My trigycerides are low and I think that's more important.
0 -
Hi everyone...totally agree on not taking statins. I know so many people who have experienced nasty side effects, including neuropathy! I'm not convinced high cholesterol in women is a marker for heart disease. Good luck to all
0 -
Nancy, have you tried taking Claritin for the joint pain? It has helped me quite a lot (and with my crazy sinuses). My BP has gone up on the meds. I was always low so I am still within the normal range but high side of normal now.The worst is my sugar cravings are totally off the rails and my appetite! My weight is climbing. I need to stop eating.
0 -
Molly, your appetite and sugar cravings describe me perfectly. I gained 15 pds in one year on Aromasin. I was approved for a 30 day holiday from the AI at my request in order to lose the weight and try to get my hair regrowing. I am 2 weeks into the holiday and am feeling such relief from the cravings and uncontrollable appetite. In two weeks I will resume a different AI. The steroid effects of Aromasin are just not for me.
Best to you and all who are working hard to live with AI in our lives.
0 -
I have terrible sugar and carb cravings!!! Was not aware that Aromasin did that. I have not tried Claritan. Typially, those types of medications wreak havoc with my sleep, so I've not been eager to try.
I AM feeling better this week and I think it's the lotion I made. I used a fragrance free lotion and added cannibis essential oil (not CDB) and copaiba essential oil and put it on my hips, thighs, butt, and shoulders at bedtime and I no longer wake up with pain during the night and very little in the morning. I also take 3 ibuprofen at bedtime which wasn't touching the pain in the past.
0 -
I appreciate your candor!
Ton
0 -
I think I'm going to have to finally get myself to a dispensary and try the mj remedies for pain. I don't want to take more and more ibuprofen. An essential oil lotion sounds good. I've used rosemary and it seems to help me some, but my family hates the smell! Oh well, too bad!
Nancy, I didn't realize there is a cannabis essential oil. Did you get it from a dispensary? I didn't know about copaiba either. Thanks for sharing.
0 -
Jazzygirl, that's awesome!! Congrats on finishing that crap!!
0 -
Hi ladies, I have been on lupron for 1.5 years and Aromasin for 8 months. My estrogen level was 17 when started Aromasin, now it is 21! I freaked out because I know the preferred estrogen level should be < 10. I am afraid Aromasin is less effective when estrogen is not low enough. Any thoughts? Thanks!
0
