Why was I stronger DURING treatment than I am now?
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....and what janet said, is so true! i thought it was just me, being the biggest wimp, but she is spot-on. good to hear that, cause i was a basket case.
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Janet - you are so right!
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Thanks kathec
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Wintersocks ....HAPPY BIRTHDAY TO YA..., sung like the Beatles song....I hope you are feeling better, ah, it's so hard to be struggling with this stinkin' disease & have a virus. Cake & tea might help.
Peacestrength, please tell me about your Zometa infusion, mainly what I want to know is did you push for it? Did your MO suggest it? I am hoping to get my MO to agree and have one in the future, & then once or twice a year. The new studies show it helps prevent distant mets. My MO told me that my insurance would not cover it, but I think if I really push she will do it. If I have to pay myself, I will.
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Holeinone - I had to push but not hard since the San Antiono Breast Cancer conference came out with the highest forms of study indicating that it can help with preventing mets. My MO said I beat her to the discussion since she was going to recommend it.
I had my ovaries removed and now taking Femara - which can cause bone loss - my insurance approved because of the bone loss preventative. It also happens to help with preventing mets. Double bonus.
I will have infusions 2x per year for 3 years.
Are you taking an AI?
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Another thing to add - one doctor at the conference stated that it will likely become standard of care in the next year for "early stage" breast cancer.
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My onco said that it causes terrible flu like symptoms and that discouraged me. When he left his nurse told me "It's not that bad, I don't know why he scares everyone."
Have you had any side effects?
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peace strength,
I started Arimidex 2 weeks ago. I told MO about that article, she was unaware of it, and spent the entire time trying to find it. I was so mad at myself that I had not printed it off and brought it with me. But last Friday, I was back at the cancer center & dropped a copy off for her. So, hopefully she will receive it. I had a appt. with an oncology nurse for a survivorship appt., & she looked at it. She said push for it. I really enjoyed this appt. as you got one full hour to talk about your dx, tx & getting back to normal.
I was very excited to find that article, I was following the San Antonio BC Symposium, and with so much cancer in the axillary ( I had extranodal extension ) I will be paranoid about mets for a long time. Or forever...thanks so much for your response, and I am excited that you can lead the way. I am willing to put up with whatever the SE are, if any.
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Wintersocks: We're glad you were born. Happy Birthday!
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Oh Purl,
That is so lovely!
Thank - you xx
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Winter - A belated Happy Birthday. I hope you're feeling better, and that the future hold happy surprises. Here's one of my favourite quotes ever from these threads, 'Sometimes when things are falling apart, they're actually falling into place'.
Or, 'As long as there's breath, there's hope'. Which I take to mean that - as long as you are living, there's always the chance that Pierce Brosnan might walk into the room.
Lots of Love, Janet
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Happy Birthday Winter! This is one group of women who can really appreciate getting older!
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Just got home from Zometa infusion. Pretty uneventful so far. Need to watch for mild fever and flu like symptoms.
Wishing each of you a good day.
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Good luck and keep us posted peace!
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Zometa? I hadn't even heard of it. I've had some bone loss in the last year... Should I ask my MO when I see him in March?
I may be having a bone scan in a few weeks due to ongoing pain in hip. Hoping it will go away so I can cancel it!!0 -
Lisa,
Go to the home page of BCO, enter Biophosphonates, Jan. 28, 2014 in the search box. A article that is titled Which Women will Benefit from Biophosphonates. Something close to that, it should be the first article to pop up. It is from the San Antonio Breast Cancer Symposium.
I printed it off, sent it to my MO. She told me insurance would not pay. I will push for it in May when I see her again.
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Just wanted to send an update - I'm doing ok since Zometa infusion. The next day I had high fever, chills and body aches. I expected flu like se's but surprised by the 102 temp - it only lasted a day though. Body aches are slight today. I'm not complaining because I truly believe in continuing to fight this gun battle with bullets - not a sword.
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peace strong,
Sorry it was not as symptom free as we were hoping. I still will push for it, & get it, even if I have to change MO. So do you still have your port? Did your MO talk about if you would get the next treatment in 6 months or a year?
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is it a long infusion? How often?
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I had my port removed during my mx surgery in Sept. My nurse started an IV in my arm and the infusion took only 30 minutes. I am scheduled to have Zometa 2x per year for 3 years. Every 6 months. Since my fever was high, my MO wants to give me pain relief and steriod before starting the infusion next time. I'm ok with the tylenol but may refuse the steriod.
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Had my rad onc follow-up today. All good news! Didn't expect otherwise, but it's still nerve-wracking.
Anyone else had issues with distraction/lack of focus? My fatigue is mostly better now, but I still feel like I have a bad case of ADD some days. I'm not tired or depressed but I seem to have the hardest time settling down to do anything.
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cfdr, yes, I have a hard time concentrating, or remembering stuff. But, I am just 3 months post chemo. Still healing from radiation.
Peace strength, how are you feeling? I read on another thread that that treatment can cause bone pain. I am going through that right now with the Arimidex, went for a long walk yesterday & today, hips are hurting. It's only been 3 weeks on Arimidex, I am guessing it takes awhile to get use to it.
Timbuktu, how are you feeling? Getting your strength back?
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The joint pain from the aromatase inhibitors does seem to be worse at the beginning. I do a lot of walking, jogging, and tai chi, and a little bit of yoga, and it seems to help. I also started having tart cherries on my oatmeal...a lot pricier than raisins, but they seem to help.
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Cfdr - Yes! Huge issues with distraction! And no ability whatsoever to focus, unless I'm in a quiet room.
What is that?! I'm like a friggin' Jack Russell.
I don't know if it's a product of treatment, (almost two years ago) or DIEP ( six months ago) or turning 50. I feel alert, and healthy, but my brain feels it's one giant pinball machine, and whoever is playing as a never ending supply of quarters. I can't remember the last time I was even able to read for any length of time. I used to read whole books in one sitting but now I'm down to a couple of pages. The only time I can read is when I'm in an airplane, cus I'm strapped in and have nowwhere to go.
Weird. But not awful.
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Janet, I really wonder if anyone's has researched the possibility that chemo can trigger ADD. Pre-cancer I was super-focused...my husband once said I "had blinders on" when I was working. I had a friend who used to bring me lunch because it drove her nuts that I would work all day without a break, and suddenly realize I was hungry at 4pm. I usually stopped my work day at 7pm when I heard my husband sit down to watch Jeopardy in the next room.
My doctor gave me (at my request) ritalin for fatigue. I don't take it much, but I took it yesterday, and what a difference!!! Worked an 8-hour day for the first time in a while. No facebook or candy crush saga "breaks", no naps, no 20 trips up and down the stairs for another glass of water or cup of tea. Just work, work, work. I think I'm going to try taking it once or twice a week...maybe in time I'll get back in the habit of focusing. I think what's going on is a combination of bad habits picked up during 2 years of fatigue, plus residual chemo brain. If I can use the ritalin to overcome the brain issue, and bit by bit work my way back to good work habits, maybe I can actually earn a living again!
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Janet, I'm almost 3 years out (and also 50 this year), but I found that using an app with games for memory, mathematics, attention and speed really help sharpen me up. I too haven't read a book in forever, but I'm still reading the newspaper, internet or anything of interest. Somehow the idea of a fictional story just doesn't cut it. The only time I really quiet my mind is at my tai chi class or watching a tv show in the evenings.
BTW, I did find this article today and it does explain a bit about our fatigue, etc. Anyone interested should check it out. Chemo effects on our DNA
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Hi everyone,
Missed you all. I have just been very busy and mostly life is actually much better emotionally lately. The deep blues and panic I was feeling has abated. I think I mentioned that I have now been diagnosed with auto-immune disease of the thyroid (Hosimoto's) and auto-immune of the joints and bones (fairly sever osteo-arthritis). Been doing aqua therapy, pain meds and exercise plus have gone gluten free and just did a two week "sugar cleanse". I hated it at first but did start feeling much better without sugar, and am surprised how many foods sugar, artificial sweeteners (which I also could not have), honey, maple syrup (all off the list) are in. Anyway, I can slowly start adding back a few things but haven't actually wanted sugar yet, I missed things like beans and potatoes, which were off my list for two weeks.
Anyway, if it works might as well stick with it.
I just wanted to welcome all the new members and tell you that this is a safe a good place to come and "talk". We are all supportive and understand that this is most definitely a process. The year after my treatment was over was the hardest. I hit the one year from the end of chemo at the beginning of January this year, I am coming up on my two years from diagnosis and surgery this June/July and in Sept it will be a full year since I finished my Herceptin (my last chemo).
I am so glad I had everyone hear to make me not feel crazy - to validate the process, the deep, deep lows I hit during last year and the joys of finding all of you and the support that brought me.
Wintersocks - apologies I haven't signed on in a bit - Happy Belated Birthday.
CFDR - God yes I feel so ADHD. And now with my thyroid disease I think I am all over the place in terms of energy. But, lately I have been able to sit and write - although I usually am working on three or four things at a time and skipping back and forth to email, Facebook and god knows what else. But, the mind is beginning to return…slowly.
Love to all - missed you and glad to read the thread and catch up with everyone.
Julieho
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Rockym, thanks for the link. Very enlightening, and validating. It drives me nuts when someone says "Oh, you're fatigued? Well, we're all getting older." Now my new response will be: "Has your DNA been methylated?"
When I turned 53 I felt 10 years older than I did when I turned 43. When I turned 53-1/2, I felt 10 years older than I did when I turned 53. No comparison to the normal aging process.
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cfdr - I so agree with you on the comments so many of my doctors now make. Well you are aging. Like somehow before I had cancer, four surgeries and chemo I wasn't and now that is all that is happening. I know the difference. I WAS aging. Now I am in awful pain, due to joint and bone arthritis becoming VERY progressive in a VERY short time, I am unusally fatigued which is probably the chemo and the thyroid auto-immune disease and most of all I KNOW THE DIFFERENCE. So please don't treat me like an idiot.
UGH - sorry I ranted here but I really connected with what you said.
Julieho
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Okay, so now I can throw this into the pot. Before cancer and chemo/rads I was at my perfect weight, very healthy with little concern about my body in a physical sense. After IDC on the left side, I've had lymphedema on the left trunk and breast, blurry vision with the left eye, three trigger fingers needing surgery on the left hand, left thigh pain, torn left knee meniscus and a broken left foot that doesn't want to finish healing after almost 6 months. When I mentioned some of these issues to my MO all I got was a grin. He didn't think they were related. Is it just some bizarre coincidence everything is on the left?? Fortunately, it all began at the breast and then eyes so perhaps now that it's to the foot, it will be the end.
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