Hormonal Treatment for Stage IV
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Thanks, Mazie. Was the lump you had removed bothering you as in painful or irritating? Mine is not giving me any problems, except that some of the hair in that area has come out so I have to be careful to arrange my hair to cover the bare spot. I'm having a bone scan and head CT scan next Tuesday, so I guess they will let me know if the lump is BC for sure. I'm pretty sure it is, but don't want to mess with it if I don't have to....e.g. surgery, radiation, or (god forbid) chemo. I'm so sick of constantly undergoing procedures....*sigh*
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Another month, and another month of declining numbers. Oncologist is thrilled. He prefers these slow drops, and he told me why and for some reason I can't remember the word!
Today's meeting was quite far-reaching. We discussed my difficulties with getting a new insurance plan with better RX coverage, banking and medicare fraud, REITs, the best Middle Eastern restaurants in town, and my level of intelligence. I am feeling stupid. Just this week I opened some files I had programmed a few years ago, and I didn't understand it! Took me a long time to even figure out a workaround.
If this continues, and I am unable to do the work that pays me money, he will sign whatever disability forms the government sent. He too is worried that the current climate will lead to reduction of medicare benefits for those who are disabled. This is a worry I have and I wonder if I shouldn't get in the system before it gets broken even further.
So hanging with the Stable Boy again.
*susan*
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susan - sorry to hear about your difficulties. I hope you can get things figured out as to what is right for you concerning getting the benifits you are intitled to and have worked and paid into for years.
I got into the "system" in January, but I have to be on disability for 2 years before I can get the medical benefits. I am looking for a loophole in all of the red tape. There are so many regulations that even the people that are supposed to know them keep giving different answers to the same questions. By the time I am "eligible" for Medicaid I will be old enought for Medicare"!
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SuSu, did you have your biopsy? I hope all turns out well for you. I also gained weight that I could not take off while on tamoxifen, but they kept telling me, Oh that isn't a SE with tamoxifen....well, it was with me and I lost it while on aromasin. I sometimes wonder what they think we will do if they say yes, it's a SE....like we would say Ok, I quit . Susan, Congrats on being stable....it's a wonderful place to be. Chemo can definitely mess with the thought process. I don't have a lot of problems with chemo brain, but am having some physical effects that impair my work skills (neuropathy, chronic back problems), but not enough to cause me to quit yet although I am slowing easing into disability. I would come out better getting it than if I worked until I am 67, 68 or whatever it is now. Being Stage lV I qualify, but since I think my work is good therapy for me, I just keep putting it off. I think getting a new ins once you have had BC is next to impossible. I called all those adds on tv, Need insurance? Call us. We insure any condition. Yeh, right. I called every time there would be an open enrollment, answered all the solitations that came in the mail....Sorry, we can't do anything for you. I was even checking with the State as they told me to do. No dice. So I ended up marrying someone strictly for ins which makes me sound terrible, but he knew that was the reason and offered to do it. Re Medicare, I don't know what is going to happen there...think maybe our generation is not going to be affected as much as the next.
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The disability question is a big one, and I am only considering it because my cognitive process is impaired and I need to insure that I have medical coverage later on.
The cognitive function issues are probably more related to estrogen deprivation than chemo [which I finished in Nov 2005.] Since I am on two estrogen blockers, aromasin and faslodex, I am getting a double whammy. The decrease in cognitive function can be tied to when the faslodex was added to the mix.
I won't make it to 67 probably, so waiting for some magic number where the benefits are maximized will not be part of my calculations.
The problem for me really is, I love what I do. I have no idea how I would fill my days without work. I have never had hobbies. The two careers that I have had require full immersion and have given my life its value.
Wow. That was more than I planned to write, but it felt good to say it "out loud."
*susan*
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Hi everyone,
I haven't been posting much lately, but am trying to catch up. I went on SSDI 18 months ago. I had already retired and was feeling lousy with SE's from the Femara. Then I had quite a good period with limited SE's. I'm currently NED, and am almost due for my 6-month PET. The past week, though, I've experienced increased SE's, intense itching at times, lots of pain in the outside of my wrists, fatigue, etc. I wonder if I'm developing an allergic reaction to the Femara after 2 years. Will ask my onc next week. The SE's are about the same as they were when I first started treatment, but now with itching, although the itching isn't constant. Benadryl helps. Anyone had this happen? Femara has worked so well for me.
I believe I'll be eligible for Medicare this fall, when it will be 2 years since I went on SSDI. I have a secondary ins from my retirement program. So, I'm trying to find out how the 2 will coordinate claims. It's my understanding that medicare will be primary since I've retired and am not working, am under 65, and my secondary plan is from MY retirement plan, not my DH's. It's confusing, but I'm pulling it together. But, I feel like I can't always trust what I'm told.
I read that ChrissyB is coming to the US!!! I've told her she should come to CO to visit. By the way, any of you are welcome to stop by if you plan to travel in this direction! I'd love it!
Lane
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Lane, IMO femara side effects can be cumulative. Your skin is probably trying to tell you, enough, enough! With my itchy skin, I slathered oil on it. For the painful joints, I tried to keep moving them. For fatigue, I stuck to an exercise routine. I've been on femara now fr three years and NED for the same amount f time.
Susan, glad to her you are still with the stable boy! Insurance problems are depressing. I'm also thinking of Marybe having to marry to get insurance. that should not have to happen!0 -
Lane,
The great thing about AIs are there are three of them! If one isn't right, you can switch to another one. Armidex is the cheapest now that there is a generic equivalent, which has some appeal. Worth switching if the SE are diminishing your quality of life.
*susan*
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Thanks, Heidi and Susan,
I'll see what my onc says next Thurs. These increased SE's have happened every few months, then they subside, but this time it seems worse. Never had the itching. Hope I don't have to switch AI's, but at least there are options. Femara started working immediately for me, and I'm so grateful for that. Exercise does help the larger joints and muscles, but my wrists are very painful. We'll see! And, I hate to complain since it's working, but guess I should tell him.
Lane
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Lane - I have been on Femara since last August and it is working very well for me too. My CA27/29 is now down to 39.8 and my curculating tumor marker is down to 13! I too had the itchy skin and benedryl does help. I told my MO and he is the one that told me to take the benedryl. Mine was not so bad that is was affecting my asthma so I elected to stay on it. Do talk to your doctor, because there are a lot of options for us if one causes SEs that we cannot deal with. Due to my asthma and the lung mets they keep a close eye on anything that causes an alergic reaction.
My current insurance runs out in August and I am not sure what will happen then. I will have the ooption of going on Cobra, but that is so expensive. I won't be eligible for Medicaid until Jan. 2013! I will be 63 then. Does anyone know if you can get on Medicare before age 65? If I could get on Medicare at 62 then I would only have to be on Cobra for 3 - 4 months. This is all so confusing and I am so tired.
On a brighter note I have finished 19 of 30 rad treatments - 11 left to go then it will be party time. I think after I am finished and have started to regain my strength I will get DH to take me to NYC to see a Broadway play. Guess I need to start looking for tickets now.
Hope everyone has had a restful weekend. I know I have - all I have done the last 2 days is sleep all day. Amy Jo
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I switched to the generic Arimidex and the price break was a great relief. Unfortunately, after two months, I started to break out. And it was just small pimples. They were very large under the skin type of pimples. I called them boils. I asked my onc to give me a prescript asking for no generics and they immediately went away. I'm guessing I must be allergic to whatever the fillers are.
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Hi Amyjo and Frapp,
I've heard of problems with the generics. Femara doesn't have a generic yet. I'll let you know what my onc says on thurs. I'm hoping it all quits by then. In the past, it has calmed down after a few days of resurgence. Just a "friendly" reminder to me that things aren't as peachy as I was thinking!!!
Amy Jo, you are past the halfway mark with your rads. That's great. Yes, you'll need to go somewhere to celebrate! You can get on medicare if you've been on SS Disability for 2 years. It's automatic. Regardless of age. I will get it later this year. I'm 61. Hope things continue to go well for you!
Lane
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Hi Lane, I'm on Femara as well and find I get the itches particularly my head and face. By taking an over the counter anti-histamine with the Femara these symptoms are more controlled. Have you tried doing that? Thanks for the invite to pop in while I'm in the USA I'll add it to my list.......I have so many who want to meet me. CO, I am presuming that is Colorado? If not, can you correct me please? thanks.
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You are coming to the states? Where? When? And yes, CO = Colorado.
*susan*
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Yes Susan, I'm coming for the get together at Marybe's Uncle Bills in Missourri come September. I will be visiting with a couple of the girls also and I will try to see as much as possible while there. I will be there for probably 4 or 5 weeks.
Love n hugs. Chrissy
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Ruthbru shared some info on the arimidex thread which I think is great (thanks Ruth, if you read this)
http://community.breastcancer.org/forum/78/topic/755969?page=65#idx_1943
Lane, My onc recommended magnesium and chondroitin for the joint pain at some point. They helped a bit but not enough so I stopped taking them. They may work for you. I don't take a multivitamin, but I did start drinking ovaltine this winter. It does have magnesium and b complex so it may be the combo is better for my pains as this winter was way better than last. I also did a lot more stretching this time, which helped I'm sure.
Amyjo, I hope you get your insurance problems sorted out. I'm just learning about the US benefits system n this board. I paid in for 20 years, but now live in Switzerland. I just read being NED 3 years disqualifies me from SSD, assuming I can get benefits living overseas. In your shoes I would apply for SSD now if you haven't yet.0 -
SuSu1976:
I'm sorry I wasn't able to post sooner. I was getting tests done (blood, PET, etc) you know the drill.
To answer your question, no, the lump didn't hurt but itched some. I'm just glad it's gone. Having mets after all these years has been driving me crazy but, I got through it before and will again. We are a very strong group of women.
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Heidi,
I'm taking osteobiflex for the joints. I'll ask about extra magnesium, although I'm also taking a multivitamin. But, maybe something's out of whack. Benadryl does seem to help the itchies. Since Femara is working, I think my onc will want me to stay on it, and I'd rather not switch. These SE's are not unbearable, especially compared to what so many are dealing with. I'm a little embarrassed even complaining about it!
Amy Jo,
You can apply on line for SSDI and it's painless. They called me within 3 days and didn't even require me to send in any paperwork. (I had already begun gathering everything to mail in!) It was about a 45 min. phone interview, just verifying what I had written in the application. They approved me within a couple of weeks, based on Stage IV, but there is a waiting period before you receive your first check - 5 months I think. But you receive backpay, then a monthly check. I think you're my age - is that right? (61 tee hee!) - so you would be under 65 when they put you on Medicare 2 years after you start collecting SSDI. The SSDI is a little more than you would collect at age 62. It shows the amount on your yearly SS statement, to give you an idea. Hope this helps. Let me know if you have any questions.
Lane
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I have my bone scan and head CT tomorrow. Hope I don't have to wait long for answers to what is going on with my scalp lesion. Mine is somewhat itchy, too, but not sore. I have had lots of itching on both Tamoxifen and Femara. I take hydroxyzine, which an allergist prescribed for me. I take it at night and it also helps me sleep through the night (otherwise, I would be wide awake at 2:00 am). The script is super cheap and very benign.
Funny, I've been thinking about retirement myself lately. I'm Stage IV, but don't you also have to be "untreatable"? In other words, if we are taking Femara doesn't that make us ineligible? Maybe I'm reading it wrong. The SSI website is not that user friendly.
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Susu,
To answer your question, you do NOT have to be untreatable. With bc, if you are Stage IV you should be eligible. I know, the website can be very confusing. There is a limitation on how much you can work after you begin collecting SSDI, so that's definitely something to consider. And, at least in my case, the SSDI monthly $ is a little more than what I would have collected if I'd waited until age 62, but, then, that amount continues for life. You wouldn't lose that added amount after age 62. I was close enough to 62 that I decided it would be worth it to apply for SSDI.
Best of luck with your scans tomorrow!
Lane
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I am getting the SSD but I have too much savings to get the SSDI and they tell me I have to get the SSD for 2 years before I qualify for medicaid. I don't understand why the amount I have in savings makes a difference now, but will not in 2 years. Oh well, I will have to figure out something to do for the year and a half between the time my company health insurance ends and the time I can get on Mediaid or Medicare.
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I guess i misunderstood you, Amy Jo. I was speaking of medicare, not medicaid, in regards to how long you must be on SS disability before you qualify. It's all a mess, trying to figure it out, isn't it? I hope you can get it arranged. Enough to worry about aside from the insurance!
Hope all goes very well for you tomorrow,
Lane
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There is a two year waiting period for medicare after going on disability. You have to buy your own insurance during that time. It is kind of rough, isn't it?
*susan*
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Hope this link works...lots of links to places to uncover the mysteries of money and mets...
http://community.breastcancer.org/forum/8/topic/757566?page=2#idx_42
I will also bump the topic on the stage iv forum.
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Okay my fellow AI'ers.... Faslodex gals to be specific. Last month, about 10 days after my injection, my injection site became very sore, bordering on painful. I am not very good at the number system so painful in this case meant, it woke me up when I moved around during sleep and slid a bit on the site. At the same time, I felt a bit feverish and my gingivitis flared indicating infection.
This month, same time period my injection site is sore, and more painful than last month. This time I have a rash around the site about the size of a quarter. Again, feeling feverish.
The faslodex insert indicates that this is not a good thing, even indicates that I should go for medical treatment. However, I am not going to the ER during a full moon cycle. If the rash is still there tomorrow, I will call my oncologist.
Just wondering. Has anyone had anything like this?
*susan*
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Susan - call your MO even if the rash is starting to clear up. This can be serious and he/she needs to know about it.
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Just so others know how this turned out.... they think that my rash is an injection site irritation as opposed to an infection. An infection will continue to grow bigger and should be accompanied by fever spikes. So, I am supposed to do a butt inspection regularly and come in if the rash increases in size.
Still hurts, but guess that is the price of treatment by needle.
*susan*
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Yea Susan for staying stable!
I feel you when talking about working at a job you love - it has reached the 'bubble' point for me - I promised myself that once all I could do was work, it was time to stop working. It is time. Still doing the Faslodex and on April 15th, I have the onc visit and I will be bringing up my quality of life. I am sure he will have no issue with signing off on the paperwork. I think I am rather lucky that my employer will continue my health benefits just as if I am an employee through STD and LTD. I will have to apply for SSDI but not for Medicaid/Medicare until I am of age to do so. I am 56 - bone mets only so I might just have to fiddle around with it but for now, I plan on getting the most years out of my life and the most life out of my living as possible.
Hugs All...LowRider
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Humm...wonder how that will impact the employer-provided benefits - I should continue to get them and Medicare A would only pick up what the plan disqualifies? The deeper into this (and closer to the end of my working days), the more questions I seem to have.
Resolved another issue today - I contacted the Specialty Care Services portion of my health coverage, specifically, the Cancer Resource Services area. The nurse that phoned in response to my email was wonderful! I will receive an enrollment package - I have to 'enroll' since it is voluntary participation. I can name other people to contact them on my behalf. I discovered that the acupunture treatments are unlimited since it is a part of 'pain management' due to the cancer, they have a major dental program should my teeth become destroyed (on top of my existing dental coverage), there are specialists on staff for concerns about treatments, support folks that just listen, financial assistance for things like transportation if I find I cannot drive myself, and the two that mean the most to me - clinical trial assistance, covering accomodations and travel and hospice/pallative care. No one needs to deal with it - a phone call to this group and they get on it and do the legwork. The other thing I found most excellent - if care that I need is considered 'out of network', a call to these folks will bring it 'into network' making it fully covered under my plan. I am so glad I did what DarleneDenise suggested - order a complete packet of the coverage provided by your employer directly from the provider. This is all covered and a part of my coverage at no additional cost. Amazing!
Sorry - got off topic a bit, I was just so excited!
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Low - how wonderful for you to find out that all of this is available to you. I know this will take a load off your mind and help releive the stress that comes from not knowing what medical coverage is available to you. You do have an excellent plan through your employer, so congratulations on getting signed up for all the extra help and care provision available. I am so very happy for you.
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