Afinitor/Aromasin
Comments
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Judy,
I'm glad taxol is working well for you, especially with no SE's. Hope you are feeling extremely well for all the festivities with your son's wedding.
Terri
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So glad the Taxol is helping so much. I took it too and don't remember too well how it was. I always took Dexamethasone (a steroid) when the nausea got bad. Glad you are feeling better.
I have a question for you all. Can this combo cause a flare, making bone met pain suddenly worse as it starts to work on the tumour? I read that that can happen with tamoxifen, and it does with external radiation. I want to know right away if the pain that has increased dramatically during the second week of A/A means a progression or a flare. I have an appt Thursday to talk to my onc about it to see if I need another MRI to assess things. But you know how it is, I want to have some idea right away. We all hate this kind of waiting, don't we?
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I also take the steroid the night before the chemo treatment! My onc is reducing it from 5 to 4 pills and then from 4 down to 3 since I'm not having really bad SE's!!
Thanks for the responses!! I am so glad that I have this site to go to at any time of the day or night!! It helps so much to have this kind of support!!!
I hope they keep coming out with newer and better drugs!! Ten years ago I lost two dear friends because they didn't have the drugs we have now!! They were so brave!! One kept working until the day she had to go to hospice for care; the other friend worked until she just couldn't go anymore!! They are my inspiration now as are all of you on this site!!!
Keep up the fight!!!
Love,
Judy
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Good news everybody! Adding a diuretic to my blood pressure medication made the difference and now my blood pressure readings are good. I feel pretty good this way. In a few hours I will see my onc about what could be a flare in my bone met that has been causing increasing pain over the last few weeks since I started the A/A combo. If it isn't a response to the drug, but rather a continuing progression, I would want it rescanned and radiated, having pain in the pelvic area is especially stressful emotionally, somehow, and I definitely want this treated before I start limping. That was happening with the first met, a few inches away from this one. Radiation in the pelvic area can have uncomfortable side effects, but the radiotherapist said they wouldn't likely be too bad in my case. Last time there was a flare in the middle of treatment, as expected, and after it was all over the pain was completely gone for two years until the second met got started.
In general though I am feeling pretty well and ready to increase from five to ten mg. or perhaps to 7.5 mg. if that is how he wants to do it. I tire easily but that has always been the case.
Judy, you are so right about the advances in meds extending our lives. It is a call to gratitude and optimism. All our feelings, good or bad, are okay to have on this roller coaster.
Love,
LIsa
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Lisa-I'm glad you are feeling better! I hope your appointment goes well.
I agree-the advances in meds have my gratitude and all of my hope in a great future for all of us.
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Hi Thea and all,
I did get to take my 12 day vacation and just got back last night! I was so scared that I wasn't going to be able make this, driving about 2,500 miles! But I broke the trip up and visited so many beautiful places. Surprisingly, the vacation was more invigorating than I ever could imagine! I am exhausted, but in a good way. I just took an Epsom Salt bath and suddenly realized, as I was soaking, I was suddenly "thinking" about my cancer again. Not that you ever stop thinking about it, what with so many doctor appts. se's from meds etc. but I realized while seeing new sites and out of my normal routine, cancer became such background for me. I want to see if I can keep it pushed back now too even though I have 2 upcoming doctor appts.
I also realized that I found so many new foods that did taste good that I can cook at home now. Thea, yes, drinking lots of water seems to be key. I have never been a big water drinker but now I seem to crave it. I have lost 12 pounds and that has made the loss and desire for sweets a good thing! I felt like my eyes were opened on this trip when I saw some of the foods people were eating, my goodness, it's a wonder everyone isn't sick from all that pizza and curly fries loaded on folks plates! My salads just tasted so divine.
My blood sugar is still a little high (se from the afinitor-making me diabetic) but not as high as it was before being put on Metforin so I feel better and more energenic than before my trip when I couldn't get out of bed. Face sores and head sores are re-emerging but seem to leave sooner than they did before.
But all in all, if the AA combo is doing what it's supposed to do, than I feel I can make this work by drinking lots of water and remembering to BREATHE deeply when I become stressed, frightened or tired, tired, tired of having cancer.
Good Luck everyone, gotta unpack some more and do lots of laundry!
Love, Di
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hi all
I've been off the boards for a bit...checking in
Thea - good to here that things are working out for you. Let us know how the increase goes.
Diane - sounds like you had a wonderful trip! I took a trip with my family in the spring and you are 100% right; the cancer does fade into the background when you are traveling and having a great time.
Romansma -thanks for reminding us of the importance of drinking lots of liquids...sometimes I just don't drink enough. The one thing that I do like to drink if I'm feeling a little dehydrated is smart water instead of Gatorade. Has all the electrolytes and none of the sugar. I really should keep more in the house.
Now on 5 mg of A/A, up from a week of taking 2.5mg. Mild headaches and some bone pain. But I've been taking Celebrex, which really helps. Everyone brace yourself for "PUKETOBER!!!
Marian
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Totally.
Mompsych, glad you are getting back on A/A slowly. I was told Thursday by my onc that we would go up a step every four weeks, so in a week we go up to 7.5 and the month after to ten. I think part of the reason for waiting that long between increases is because here in Germany they only give out sealed boxes of pills rather than counting them out into vials. It is a huge waste when a drug doesn't work out and they wind up in the trash. He says my Afinitor pills for the month are 5,000 dollars for the insurance company. I pay a $6.50 copay. Anyway, at the moment I really have no side effects from the Afinitor, having added a second med for preexisting high blood pressure. The increasing pain I wrote about will be scanned in a few weeks to see what is going on, whether it is a flare from the pills working or further progression.
Diane, great to hear about your vacation. Tired in a good way, that is a great feeling. I have just finished my coffee, now to go drink some water...
Lisa
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Things have changed. I have so much pain now that I am worried that the bone will break, it is a small sit bone in the pelvic floor. The orthopedist wanted it radiated when he saw the MRI but when the radiotherapist saw the CAT scan he gave me the option to wait a few months and see if it had gotten bigger or less stable as far as whether it could break. Then I started the A/A two months later and now this flare. I am spending the day in bed and calling my onc tomorrow morning to ask for a referral for the scan. The kids are home and I don't want to go to the ER especially while my husband is away, he will be back late tomorrow night. Meanwhile I have a heating pad and am keeping still in bed, without telling them anything but that my hip hurts. They don't know I have mets.
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Thea, I hate to hear that you are in a lot of pain! I think you are wise to call your onc as soon as possible! I hope it's just the meds!
I'll be anxious to hear the latest !
Judy
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Hi Thea,
I'm not sure about your pain, but I have a Zometa IV drip every 3 months to keep my bones strong as my cancer did spread to them. I had the IV monthly and went every 3 months about 2 years ago and my scans show the bones "good" as in no further spreading. Just a thought.
And Mompsych, I love smart water, another I have found similar and like the taste better, is eternal water. Usually found in Harris Teter, also no sugar in it and balanced electrolytes. Water seems to be a key in my feeling better...whenever I find I get that funky feeling, I start to drink it and it seems to flush the funk away...gotta be a good sign!
Love and Hope to all!~Di
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Hi Diane, Hi Judy,
It took a while to get to writing what happened yesterday because it was sort of depressing, but now I am feeling good. My husband came back from a week away on business last night and we hung out for a while until he went to work just now.
First thing yesterday morning I spoke with the Onc nurse and she said I could come by and pick up a referral to get the scan. When I got there she asked how the Affinitor was working out and I said, really well, there aren't any side effects now, and then I started to talk about how I wanted the scan to rule out any fracture risk in the pelvic bone where the met is (the bone is called the ilium, if anyone is wondering) and she became very dismissive. She said something about all the strange thoughts that go around in our minds, as if my concerns were not valid. I used to adore this nurse, so my feelings were pretty hurt. But I just limped away to the radiologist, where I made the scan appt for Oct. 24, the soonest I could get. I also have an appt to talk with the radiotherapist to ask a few questions about whether he thinks I should have the scan then or postpone it and get a better picture of how the A/A combo is working. That is for next Tuesday. I stopped by the orthopedist to tell them I felt I needed a cane and they said they would have one for me today. Today I used a lot of pain medication, I still have to limp but at least it doesn't hurt too much. Yesterday I was really tired after coming home and had a long, luxurious nap. But while I was out and about the nurse's reaction to my request for a scan had me in a real funk You mentioned the Zometa, this same nurse gives me a Zometa IV every four weeks, but lately I feel like the vibe is changing somewhat. Maybe I have become pushy without realising it since this recent progression. I actually enjoy that infusion and look forward to it because of the spa like environment, the cushy chair, the relaxation music, and the cup of coffee they offer.
On the way home I talked with a good friend and she arranged to help me with my daughter so I wouldn't have to go across town later that evening to pick her up from a birthday party she was at. I was so grateful to just go home and lie down instead. That was a great feeling.
Love to all,
Lisa
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Just curious... Does anyone else have bruises that last forever? I've had them on my legs since May....I keep getting more and the old ones are still there! It's been getting worse the longer I'm on A/A. I've been on A/A for 16 mo. now. Not a big deal, they don't hurt more or anything...my legs are just going to be completely gray soon! Just wondering...
Julie
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jnh, how are your platelets? I would mention it to your onc.
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Diane- love the name Eternal water! Does that mean if we drink it we will live forever??? How about a normal life span. That would work too : ) Thea - sorry the nurse was so dismissive of your pain. It's sorta like a punch in the stomach when you get a response like that. Hope that the next time you see her she is more responsive. Julie- sorry about the bruises- Tina's thoughts re: platelets seem good.
As for me, I'm sticking with 5mg for now. Mildly nauseous at times, skin is breaking out, a few mouth sores and some rib pain. The rib pain sucks- the rest I can deal with. I'm taking Celebrex which does help. Onward and upward.
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Thanks, ladies! I'll mention to him again. I know blood work was good first time we talked about it months ago and he wasn't real concerned. I appreciate your thoughts!
Julie
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And you'll love the bottle shape of Eternal water too! Yes, our Fountain of Youth!
I agree with you in your response to Thea too and the nurse's dismissive response. Funny, but until one walks in our shoes, even though I know their jobs must get overwhelming, our lives are even more so! And, our sensitivity seems to increase to any kind of remarks that tinge on such dismissiveness. It seems my past 4 years since my diagnosis have been spent more on my forgiving of those that just don't get it. I have some friends who are so sensitive they'll say things like "oh, I hate to even mention needing my knees replaced with what you are going through" to which I responded, "Are you kidding! I would hate to be going through knee replacement, bitch away!" And then the opposite, as in my sister "Well, we're all going to die one day so I hope you won't start looking for sympathy"...yeah, you know how long I've been working on forgiveness for that remark! Who am I kidding, 4 years and counting and I'm still working on that one-ha!
Stay true folks, stay strong, we're in this boat together and we're sharing turns rowing for each other when one of us can't. It's a helluva haul but hey, so glad to have "met" you all!
Love and Best Wishes, Di
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Diane- Your sister's comment (Well we're all going to die one day so I hope you won't start looking for sympathy) leaves me speechless. That's ignorant and rude and an unfeeling miserable thing to say. Wow. I can't even think of a come back comment... she must be something.
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Diane, you are too funny. Glad to have "met" us all. It made me wonder if you are not perhaps on some serious painkillers right now! I myself have started on Tramadol today, which is a synthetic opiate type of thing. I was taking something that is not allowed in the US, I believe, it is called metamizol and can cause a rare and fatal blood disorder as a side effect, so I decided to try the tramadol and see if I could get more comfortable. I have already gotten over the nurse's remark, if only because the tramadol has given me more of a sense of humour. What your sister said is just ridiculous but I have heard such things before. At least the part about "we are all going to die sooner or later anyway". It was from the man next to me on a plane. He just had no idea. Maybe the nurse just wanted me to stop worrying about something that she thought was highly unlikely to happen, and I am certain she didn't set out to be callous. But I can understand how forgiving your own sister for a nasty remark like that could take years. We feel more strongly about family members than about others. Anyway, I am glad you are in this boat with us, you really have a way with words.
Love to all,
Lisa
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Thanks Rosevalley and Thea...no Thea,I'm not on pain meds-ha! I did take tramadol for my headaches but they never seemed to take them away. My friend with knee replacement loves them...don't know why they were not effective for me but my severe headaches from the A/A combo have subsided now so I'm so grateful not to have any more pills than necessary in my system.
Yes, I really was floored speechless by my sister...my Father use to love to say "We're all terminal" and he proved it true last year when he died. I guess my sister didn't fall as far away from that tree as I did in the empathy department!
But I remember reading an interesting comment in a breast cancer book one time, where the author (who had breast cancer) said that it's like "we're all walking across a busy highway and could all get hit by a car at any time. The difference for cancer patients is that it's like we have blindfolds on". For some reason I resonated with that comment!
So dear friends, I'll leave you all with that tonight hoping everyone finds comfort wherever you can and everyone sleeps well!
Love,
Di
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I don't post much, but the small facebook group I belong too of women under 40 with Mets, three of us are on a/a and we all just started. So I kinda was hoping to connect with people who are on it, doing well and how they responded. This thread is so long I tried to read all your posts but I got burnt out lol.
Just an intro: diagnosed with stage 2 in 2010 at 26. Had bilateral mastectomy, ec x 4 / taxol x 12, 28rads and I was diagnosed with stage 4 after two years on tamoxifen. I had a malignant pleural effusion, lymph nodes in chest, and a spot on a rib. Did zometa, Lupron, and femara up until yesterday. Markers rose and after femara cleared up most of my Mets and kept me stable, a node grew and a new met in my t4 and another rib. Now I move onto a/a with Lupron and zometa. Hope this works.
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Caite: Hope your new treatment works well for you. Zometa has been great for the bone mets; I've been on it for 5 years. I'm on 2nd AI, Aromasin & Affinitor as well as continuing Zometa. A/A takes a while to work.
Terri
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how long does it take for markers to drop? I am getting labs in 6 weeks followed by scans and labs at the 3months Mark.
I am also asking for a new biopsy to get the receptor status double checked. I was mild her 2 neu 4yrs ago. I was wondering how they biopsy bones or lymph nodes.
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My markers were cut in half after the first 3 mos and the 40% increase in my liver tumor had significant shrinkage as did the 5 new tumors in my lungs. All after 3 mos of TX. This is why, despite the se's, especially now having diabetes from the A/A meds, it was worth staying on them for me. I'll have more scans in Nov. and am hoping hard that the shrinkage has continued! Good Luck Caite!
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I have news again. I just started the 7.5 mg to take this month, 5 mg. was last month. I saw the radiotherapist today to ask if he thought the scan date I got for Oct. 24 was soon enough, I told him that I was worried the bone might break. He reassured me that the pelvis is stronger than the orthopedist led me to believe, and we made an appt to discuss the CAT scan the following week, on Oct. 30. Meanwhile the initial side effects of lessened appetite are gone,and apart from a pimple that appeared yesterday I don't have any now except that this pain in the hip could mean the Afinitor is working. So I guess things are looking good, in spite of the pain. Perhaps taking the starting dose of Tramadol is enough to mask discomfort I would be feeling from the Afinitor, like headaches or whatever. I have been using a cane or walker around the house and out and about, and it is much easier than doing without. If I were to lie around all day to try to avoid putting any weight on the pelvis, that would be really bad.
I just today got a bra in a larger size. My old one was down to one hook and it was trying so hard!
It is very relaxing not to worry about sudden wardrobe malfunction. I bought lots of new underwear while I was at it. It was about time. Shopping can be especially therapeutic when it is for something that you really need. Too often, though, I go shopping when I don't really need anything, and wind up spending either too much (guilt) or nothing (waste of time). It is much better to spend that time connecting with people, like here on this website, than to shop alone.0 -
Hi everyone! I haven't been on BC for a while. Glad you are all doing well. I've had increasing pain this past month. I suspect something is on the move, but not sure I really want to know, you know? Anyway, decided on a whim to go to Game 5 of the NLCS in SF. In a hotel tonight with my son and will be at the game tomorrow night. Can't wait! I've had an increasing need to check off some bucket list items lately!
Julie, did you figure out the bruising? I've had problems with bruising on and off throufhout the AA treatment. My platelets get low from time to time. I had a pedicure over the summer and the leg massage caused black and blue bruises all up and down my lower legs.
Caite, welcome. I hope things go well. This is a powerful drug combo that works well for many. If I can answer any questions, please don't hesitate to ask. I've been on AA for 10 months now, with a couple of small breaks. My last scan a few months ago showed my numerous bone mets to be stabilizing, for the most part.
I'm hoping my increasing pain is something else and that this combo is still working. However, the trials didn't typically get this long for effectiveness. We shall see. For now, all I can say is, GO GIANTS!
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Just finishing my 7th month on A/A and went for my scan today. Results next week. Feeling Ok still so hope all is good. i promised myself that if all was well, I would visit my friend in Paris. I would leave right after halloween and be back in time for 10yr old's birthday on Nov 13. I would have 13 days to myself in Paris and just enjoy. Keep your fingers crossed for me. As Romansma says, the trials suggest about 7 months of effecitveness so hoping I get just a little bit more out of it.
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Hoping your scans go well and especially hoping you go to Paris! Sounds incredible!
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Romansma,
I love the Giants and have been watching the games. Glad you will get a chance to see the 5th playoff game. Look for Steve Perry singing Journey songs in the crowd. He's been at every play off game. Enjoy.
Terri
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Best night ever! Yup, he was there! Sing along with Steve Perry to Don't Stop Believing! Before the game started, a ladybug landed on my jersey, so I knew luck was on our side. Then the ladybug moved to my hand, reassuring me luck was on MY side too! They won, of course! See, back in October of 2010, I was being diagnosed with breast cancer. With each test, the news kept getting worse. However, the Giants kept winning, game after game! They went all the way and in doing so, they got me through one of the toughest months of. my life! Don't Stop Believing!
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