Arimidex - Coping with the SE's
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Hi, I am going to jump in here after reading several pages.
Flannelette- would you mind sharing the oil infusion of some herb. I did not have chemo but am on Arimidex( 1 1/2 yrs) and I feel like my hair folicles might be in trouble! I am experiencing "thorn-like" feeling in athe left anterior side of my head. I haven't got answers on what this is, no one has heard of it or why it is happening.??? I don't no either but if it is hair loss or thinning I want to be pro active and do something. I am not familiar with the penguin cold caps or if it would even be available to me. Any advise from anyone would be greatly appreciated! Thanks!!!
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Balsie
Would you please LIST the ingredients of the Reumofan from the bottle you have. All the websites I've seen have not been specific. I'd like to know EXACTLY what's in it, and amounts. Thanks.
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Taking my first little white pill this morning....are you jumping with me Anne?
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Poor Jenn, I truly don't know how they can say that your back wouldn't be hurting with two herniated discs!!! Really, how could it NOT be hurting! Get the epidural, but if it doesn't improve make sure they just don't blow it off. My sister injured her back in an accident years ago, was in continual pain, which the doctors couldn't explain, until she insisted on an exploratory sugery where they discovered bone shards in her muscles (which, at that time anyway, couldn't be detected by non-invasive means). I know what you mean about hating the trips to the doctors; I was 100 miles away from my treatment center too. And now I hate to even go to that town for shopping!
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Stage1 - my nails have always been crappy with vertical ridges, peeling, etc thanks to thyroid issues. Chemo was horrible on them - they lifted, some came off completely! Now I am 6 months PFC and still on thyroid meds of course - but with arimidex my nails are amazing! Long, strong, and the best nails I've ever had!
Once your chemo nails grow out I hope you have the same results!
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mtks: the Penguin Cold Caps are used to prevent hair loss during chemo infusions. They have been used in Europe for decades and are built right into the cancer centers there. I was the first user at my cancer center, but UCSF has just completed a clinical study and our hopes are that they will soon have FDA approval. The concept is simple: you freeze your hair follicle during (and 4 hours after) each infusion; the hair does not absorb the chemo so does not fall out. Cold is also long known to stimulate new hair growth.
PCCs are nearly 100% effective with TC treatments, somewhat less effective with ACT treatments. It is *cold* but it was amazing to have all of my hair throughout chemo; nobody knew what I was going through unless I told them. My physicians were initially supportive but skeptical, and now they all recommend PCCs to their newly-diagnosed patients facing chemo. My obgyn even referred her best friend to me.
There is a very active discussion board here if you want to know more: I came in on page 16 of the group and it's now at about 173 pages (Good Morning America did a story on us in 2010 and word has finally got out. Most physicians still don't know about PCCs).
Penguin Cold Caps are rented during the infusion, but I have a demo cap which I use when I coach new PCC users. Between chemo infusions, many women will wear the cap out of the freezer for an hour or so a couple of times a week; this preserves the hair and also stimulates new growth. I'm thinking that if I do that with my demo cap, it might prevent loss.
I'll check with Frank Fronda, the inventor of the PCC, to see if he's had any experience with the caps and Arimidex. There is another cold cap called Elasto-Gels, which are purchased and which are less expensive, and they might also make sense in terms of Arimidex SEs.
I'll report back what I hear!
Does Femara have the same hair loss side effect? Is the hair loss SE generally known among the doctors? It didn't come up in my conversations with my MO.
Susan
p.s. Penguin Cold Caps in the US are at http://www.msc-worldwide.com/indexusa.html
I have no formal affiliation with the company other than being an extremely happy customer; I discovered them by accident the night I learned I'd need to go through chemo. I'm determined to help spread the word about this option for those who wish to battle the hair loss SE of chemo.
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Sure the ingredients are :
Guasima: Plant very common in Cuba used in the aid of contusion and toprevent hair loss.
Holm Oak: Plant easily found in Dugango, mexico. It has anti-inflammatory and antibiotic properties, it is believed it also has cancer preventive properties.
Eastern teaberry: used against rheumatic pain as laxative and diuretic, anti-inflammatory, analgesic: muscular pain/inflammation or articular, headache and gota arthritis, rheumatism, ciatica and neuralgia
Cancerina: anti-inflammatory properties and contusions
Matarique: plant used by tarahumaras to treat diabetes, rheumatism, constipation, neuralgia, it also helps with production of scar tissue.
Shark Cartilage. Strong anti-inflammartory, analgesic, stimulates immune sysem; regulates angiogenesis and inibits tumor growth.
white willow: called the natual aspirin for its beneficial effects. it also has anti-rheumatic properties,
Glucosamine: very useful in the treatment of arthritis aids in the recovery of articular and tissue damage, also fights osteoporosis.
curcumin from India, soothes the pain caused by arthritis, excellent anti-infammatory properties
Vitamin C: neccessary to produce collagen and for wounds to heal properly, repair and maintanence of the body.
Vitamin E: strong antioxidant (helps protect muscular tissue)
Magnessium: Natual relaxant with proteins has a diret effect in the production of collage which helps prevent pain caused by arthrosis and osteoporosis
calcium combined with Magnesium helps control function a important as cardiac rhythm
Dose:
Th recommended dose is 1 tablet in the morning and 1 in the evening (1 every 12hours) The full treatment is for 2 months, if the symptoms have gotten better by then you can lower the dose to 1 tablet everyday for 1 week and after hat 1 every other day depending on houw you feel.
since it has a light energizing effect it is not recommended to have it before going to bed specially if you have problems with insomnia.
I copied this off the paper that was given to me by lady who sold me the pills.
I have no more joint pain. I actually wondered if the pharmacy gave me the wrong prescription and that maybe it wasn't Arimidex in that bottle. Went and checked and it said A-7 on the pill. I think that is the generic form from TEVA. I alway check because the pharmacy I go to has been known to give out the wrong pills.YIKES!
Be well
Balsie
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Hi, its been a long while since Ive posted here.
Im wondering how many of you have experienced vaginal bleeding as a SE to Arimidex? If so how long did it last?
Ive started on Arimidex just over a week ago after finishing 2 years on Tamox. 3 days ago I started bleeding equivalent to light menstruation and still going. I freaked out at 1st knowing I cant get to my Doc til tomorrow, at best. OF COURSE it had to happen at the beginning of a row of public holidays.
On the support brochure that came with the tablets it didnt state bleeding as a side affect. It doesnt on this site either. I looked on a NZ site for data sheets concerning medications and it does state it as a SE, so I relaxed a little. How long should this go on for before I need to be concerned?
Id appreciate your comments.
Musical
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Hi mtks - it was burdock seed oil infused oil (arctium lappa) seeds not root, and an infused not essential oil. Herbalists infuse the seeds in oil for a certain amount of time. I bought mine in Canada from Judy's organic herbs (www.earthmedicine.com or .ca) Says it will restore hair thickness with continual use, and is popular in slavic countries. Mine cost about $23 for about a half-cup (100 ml) but bet you find find good organic stuff in the US. I'd search out a reputable organic herb farm where they make ther own, or you can make your own following susun Weed's recipes. I think I'm either going to make me a batch, or order it already made - had totally forgotten about it.
About pains - sorry, don't know.
My hair (and my boobs) were my best features! wahhhh
Arlene
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musical, I would call my doctor right away.
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Thanks ruthbru for your response.
Yesterday I did ring what we have as an afterhours # where a registered nurse 'evaluates' whether it is urgent or not. She told me as well that bleeding can be a SE of Arimidex. The data sheet states it can happen, especially in the 1st 2 weeks. So, you basically have 2 choices. If its urgent you go to ED (Emergency Dept of Hospital) what I call the 'bug factory' where you can wait hours and get everyone elses bugs as a bonus, or you can go to an 'on call' Doctor, which Id prefer not to unless really necessary. Id prefer to see my own Doc.
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I agree...I don't think it is an emergency or anything but you will want to get into him/her as soon as you can as it doesn't seem right either.
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Thanks again for your comments. I dont reckon it seems right either. I'm still wondering how many people have experienced this. Anyway thats what I will do 1st thing tomorrow. Now lets hope DOC isnt on holiday.
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Hi everyone!
It's been a while since I checked in. I have only posted a few times, but I LOVE reading everyone's tips and advice.
Musical: I have bled (very lightly) on AI's and consulted with my Dr. I got a vaginal ultrasound to be safe and everything was fine and have not had it since. This March I will be on them 2 yrs.
I wanted also to let you all know something I have found that has greatley reduced my aching joints. It's so good I still really can't believe it. I found out about a self treatment program called "MELT." It involves pressure points on the hands and feet.... almost like reflexology that are activated with small balls. You can google "the MELT method" and you'll find it. I took a class and have been doing it for about a month. Just like so many of us I was having trouble getting out of bed, getting up from a chair after sitting a while.... you know the deal. I took this instructional class and my pain/discomfort/etc. went from about an 8 to anywhere from a 0-2 (on a 1-10 scale)! It is hard to describe so going to the website will explain it better. No drugs, no crazy potions, etc. It takes about 20-30 mins and they say you can do it as much as one time per day to three times per week to feel the benefits. I like it enough that I am looking into becoming an instructor myself to get the word out to others. The total cost was $65.00 ($25 for the group class and $40 for the kit).
Let me know if you try it. I'd love to see what you think.
I sure wish I knew about those cold caps! I didn't have the greatest hair before chemo and now the AI's are making it even thinner. I'll take any advice anyone has!
I hope you all have a great 2012!
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Lyncerock, thanks for your input. REALLY appreciated.
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Musical, I had light spotting for about 2...maybe 3 days after about 2 or 3 months on arimidex.
I emailed my onco and she said she was nearly sure it was arimidex switch over related...very common she said. Since I had had an endometrial biopsy about 6 or 8 months prior from spotting when on tamoxifen (and it was b-9), no one seemed to care. I still occasionally have phantom period symptoms but no more bleeding. If I did bleed again, I am sure they'd investigate now (maybe), but after the intial spotting, nothing else has reared its ugly head.
I have read where women well into their 70s periodically will have a period, once a year and it is never anything. Of course, now, we are always watchful and worried. Best to you.
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Lyncerock - I just googled the Melt Method - did you buy the set of balls? I don't think there is anyone near me to do training - if you buy the dvd, instructons etc, do you think you could catch on with the ball use at home? this really intrigues me!
Thanks
Arlene
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MamaV, about the nail ridges...I had these before BC, did not have chemo, still I feel like one of my nails is loose...big ridges. I am going to the PCP on Thursday, I'll let you know what he says. I am going to try to increase my protein. But I think it is the thyroid medication. I am on arimidex, since July...
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Wallycat, thanks for your comments. Great to have this resource where we can 'compare notes'. It really does help.
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stage1 - It's probably thyroid then ... maybe they can give you some kind of super vitamin
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Balsie
THANK YOU THANK YOU THANK YOU - that souds like all good "stuff" - if my joint pain ever returns, I would try it.
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Arlene,
I took one instruction course and felt that it was enough but not terribly necessary. I bought the kit from the instructor and it comes with a handy and small instruction manual.... cheat sheet ..... that I use every time to make sure I am doing it correctly. The kit comes with the balls and also a DVD to walk you through it. It's very user friendly and clear. The people are also very accessible (I have emailed them with questions) and pretty quick with responses. I did experience a little naseau at first but it disappeared, fyi. I would love to know how you respond if you do it!! I really hope it helps you the way it helped me. Like I said, I responded so well I may take the instructor course so I can help others. Good luck!!
Lynne
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MamaV, Either thyroid or lack of iodine. I will talk to the PCP on Thursday.
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stage1 let me know what PCP says ...
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I had a bunionectomy yesterday and after my surgery was completed, my doctor told my husband that my bones are very soft. I have an oncology appointment next month and will discuss the bone issue with my onc. I hope it isn't as bad as I fear.
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Rocket--hopefully the soft bone is only in the bunion area, but a bone density test would give you good info about the rest of your skeleton.
I saw my Med Onc yesterday and she is going to stop the arimidex in October. She's counting the time I was on tamoxifen, time I feel I wasn't getting any treatment (no hot flashes, taking large dose of prozac, no side effects) so I will have gotten 4 years, 5 months treatment in October. And she's going to have me do another bone density test this summer. After the Arimidex is over she turns me over to my PCP--no more onc appointments, "very liberating" is her description. I already have doubts about getting the care I should since I refused chemo and becuase of the delays before every stage of treatment. No one has said one word about long term problems, what I should be looking for, what I'm at risk for, etc. Even though I've never trusted that I was gettnig the right care, now I feel like I'm going to be abandoned in October. Why a bone density test this summer if I'm just going to be dropped in October? She said some of her patients are staying on an AI after the 5th year because the studies on the optimal time for AI therapy will be reporting results in the next year or so, but she didn't offer me that option. I told her I didn't feel I was getting any treatment on tamoxifen, that's why I've been putting up with the lupron shot torture every 4 months for the last almost 4 years, so I could be on something that was working. If I'm just dropped after October and next spring they find out that the best length of time to be on an AI is more than 5 years, what happens to me? Do I have to go through the process of getting a referral to an oncologist to get put back on it?
Good Lord, I would give a lot to get oncology care that I could have confidence in.
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NativeMainer - Guess I've been so focused on the "one step at a time" plan and getting through year one that I hadn't thought 5 years out. I imagine it will feel very strange to suddenly be cut loose! I would hope that my oncologist would still be available to me for a direct question every now and then instead of having to go through the PCP. We'll see....
Sorry you've had less than the utmost confidence in your care. I've had that feeling about other medical issues in the past with previous doctors that I ended up severing ties with (not any of my breast cancer docs) and it can be truly stressful. Hang in there!
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Shouldn't you still get a yearly check with an oncologist? Not that I love going to the doctor, but I am not going to be very happy if they just dump me off on the curb after 5 years (which is coming up for me too).
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Apparently getting a yearly check is not what is planned for me. But I did refuse chemo and I know that makes me not eligible for a lot of services (social work/counseling, Look Good/Feel Better classes, breast MRI rather than mammograms) so I guess that I don't qualify for yearly checks with onc after treatment is done either. I don't love going to the doc either, but I don't know what long term stuff to be looking out for, had hoped that I would be seeing the onc once a year to cover that kind of stuff. My PCP is more than willing to do whatever is needed, but she's usually told by the oncs to keep out of the "cancer care" stuff so she doesn't know either. I keep reading about "survivorship plans" but apparently that only applies to people who get chemo, too. Maybe I should to talk to my PCP and find out if she is willing to do the lupron and prescribe the arimidex and gabapentin. If she is then I can dump the onc now and quit driving 90 miles (one way) just for the shot and prescriptions. My PCP I can trust.
Of course, I am in Maine and that means that I'm in a medical care system that is 5 to 10 years behind rest of the country. Oncotype testing isn't routinely done here yet, Her2 testing was just starting to be done routinely when I was diagnosed in 2007 ( I had to ask for it). I often wish I'd had the energy and forsight to get treatment through one of the Boston centers, but I didn't. HInd sight always is 20/20. I'll figure out something, I've had to manage all my own care all along, I guess I shouldn't be surprised about needing to do it in the future.
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NativeMaine who told you you were not able to participate in all of these services? It sounds wrong to me, perhaps someone extrapolated from your refusal of chemo to this huge jump in logic. Aren't some of the things sponsored by the American Cancer Society?
I hope things go well.
GInger
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