Hormonal Treatment for Stage IV
Comments
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Dear Chrissy,
Agree with you 100%. I wish all could get the brand name med...I truly believe there are differences not all the time of course but for me the brand name Arimidex is SO much better . Carolyn
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Good Morning Ladies,
Please send all the positive BCO Sister vibes you can spare my way! I've just finished my quarterly CAT and Bone Scans and am waiting for results.
My last set of scans showed some slight new activity. This was after three plus years of quiet while taking Arimidex. This activity showed up shortly after I had complained about new & worse SE after an insurance-switch to Generic Anastrozole. My MO felt that this might well be the reason for the NA so we decided to try name-brand for three months and then retest.
I'm more anxious about this set of scans than I have been in a long time. While there are SE on Arimidex that I could do without, the thought of switching really scares me. I know it happens, and is inevitable but I'd like a little more time before switching. I feel guilty asking because so many of you have faced this change with courage and grace. If I have to I'll put on my big girl panties and deal with it. But, the devil you know etc.
Thank you so much for being there. Having y'all just a click away is such a good thing for me. When I mentioned this switch to a cousin, who usually gets it, she said "Why be worried? It's not like you haven't known all along that this was going to happen. This is just the next step, right?" Inside I was screaming "No, it's not right!!" But I knew that I didn't have the strength to explain it then.
Happy, sunny days to each of you,
Virginia
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Virginia, I had CT and Bone Scans done on Monday, too. I am hoping to get the results next Monday when I see my onco and have my monthly Faslodex/Zometa treatment. I am also taking Arimidex like you are. I have been having more back pain than usual, and I am praying that the mets have not progressed.I'll be praying for you to have great results, and holding your hand. Sorry your cousin was so insensitive. People can say such stupid, thoughtless things.
Let's post when we get our results. I helps me so much to have all of you ladies here who "get it".
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Virginia and Birdlady,
Sending all the positive vibes I can your way! Let us know when you hear back.
Big hugs, Susan
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Sending positive vibes and good energy your way!
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Vadre & birdlady - hoping for good reports for both of you!
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Virginia and Birdlady, sending good strong vibes your way to get good results with your scans!!
Love n hugs. Chrissy
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Vadre,
I am thinking of you this moment and hoping that all is well for you. Since I take the brand name Arimidex, I am fascinated to know what your doctor thinks and the outcome of your tests. Noone can ever positively prove there is a difference but I think so and then again the brain controls some of our thoughts. Nevertheless, I am happy for you that the new activity has been caught so soon. I am sure your oncologist has a good plan and that you can reattain the stability you had for so long. Carolyn
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Birdlady,
You're on! I'm holding your hand while we wait! Sounds like you'll have news on Monday. My appointment is Tuesday. My husband fees SO confident this time that it's making it a little easier for me. I've been having a little more back pain too but I think that might also be because I have been so lax about exercise lately. I feel better when I move around but it's so hard sometimes and it's been so dang hot.... Wow! Have I got that whine down or what?! ; ) So I'm sending special prayers for Peace and good results your way. Which is your favorite bird?
Carolyn, My MO is absolutely on board with the thought that there can be a huge difference between generic & name-brand. I'll let you know what she thinks when we've got results. When I got my initial diagnosis and second opinion, the second opinion doc from Johns Hopkins said "Ride that Arimidex as long as you can. It is your friend!" That's my plan!
Thank you all for your sweet words and strong thoughts. I cried as I read your simple messages of support. How many times can we say "it feels so good to know someone understand!"
Hugs!
Virginia
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I can't thank all of you enough for supporting my suspicion re: the generics! Valerie, you expressed my current feelings so well - I've been thinking that the ca will take my life, but the meds are for getting me ready to go!
I'm googling today and will call my MO in the morning!
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I've been on arimidex and then the generic since 2008. For me, no difference betw icky side effects of brand name and generic. My understanding is that if you have a little arthritis, then the Arimidex magnifies and potentiates it. I hate it but I have been NED since 2008 thanks to Arimidex and Herceptin. When I was off arimidex for about 10 days because I left my arimidex behind when on vacation, my joints and arthritis symptoms were much, much better AND I GOT A WAIST BACK temporarily. I am a big supporter of curcumin, the concentrated form of turmeric: I take 2 grams of Doctors Best C3 curcumin, 1.5 grams of Doctors Best curcumin phytosome/Meriva plus 600 mgs dbl strengthTtheracurmin - plus curcumin added to other stuff. I also take boswellia 600 mg. plus glucosamine/chrondroitin/MSM, hyaluronic acid and Zyflamend. On the energy side I take sublingual B-12 wi B6& folate 3x week. And 300 mg ubiquinol (CoQ10) with 20 mg PQQ.
When I upped the acetyl L-carnitine from 500 mg. to 1000 mg a day (wi 300 mg. of alpha lipoic), my leg pains were immediately reduced.
Like others, stretching and exercising unkinks the joints and reduces the pain. I use nordic type walking sticks. It takes pressure off the knees, feet and ankles and makes walking much easier. I can go about 2-3 miles with no problem. Otherwise my distance is much more limited from what feels like 200 achey joints in my ankles and feet. I urge people to try nordic type walking sticks to see if reducing pressure helps. it is also supposed to increase the calories used in walking by 20% but my buddha stomach is still there.
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MiracleMile,
You have described the difficulty of Generic vs Name Brand precisely. Some people do well on both versions of the medication. It seems to be affected by how we react to the "fillers" used in each. Some of us also react to the differences in which Generic manufacturer produced the medication. I was fine dealing with the different SE each had, but recently I had new activity which appeared after a long period of generic use. A switch back to name brand has quieted the activity and that is what it's all about! I'm glad you respond well to both - it probably adds to the tricks in your bag!
CreiierzMom,
"Arimidex Direct" is the web site that connects you to the program that gets you name brand at $90 for 90 days. For me it was as simple as filling out the form and having my MO fax an Rx. I received my Arimidex in the mail within a week! Good luck!
This is why I LOVE this site. Shared information, shared support! Sisters holding hands, in a circle, supporting each other. My life is better from findin y'all!
Virginia
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Virginia and Birdlady.....holding out my hands to both of you and sending love, support and positive thoughts your way. Do keep us posted on the results.....
Virginia - I laughed out loud at your "big girl panties" comment.....not because facing a switch after three years is anything to laugh about, but because I myself am such a baby that I complained about the SE's so much I ended up trying all three AI's and Faslodex in about an eight month period until my oncologist finally said "enough - choose one!". I also had no idea that there could be a difference between name brand and generic, and looking at my pill bottles (all of them!) I know that I was always getting the generic....I wonder if switching would make a difference for me.
Anyway - thinking of both of you and hello to everyone else..... hope everyone has a good week!
xoxo
Andi
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Help. Jumping in again. My tumor markers CA25/27 or whatever, have
NEVER been normal. In June 2013 when I was first diagnosed, they were
898. Slowly, after being on Armidex since June 28, they began dropping,
very rapidly at first. Then in February of 2014 they stopped dropping and got to 132. Then the bad: April 166.6, May 196.7, July (last week) 272.9. My
PET scans have gotten BETTER. The one in June 2014 was better than the
one in Feb. 2014. However, now my onc. is feeling something's not right.
He is wanting another PET scan the first week in August, and an MRI of
the brain. Coincidentally, my regular dr. had an MRI done April 17, 2014
and it was fine. But the onc is now worried.
HELP.
Me: stage
IIIA in 2002. Diagnosed Stage IV in June 2013. Mets to skull, spine,
ribs, sternum, pelvis, upper left arm, left thigh. Nodules on outside of
right lung gone, had Pleural effusion June 28, 2014, drained 900 ml,
it's gone (just a little remains). Had positive lymph nodes in chest,
gone now too.
Still on Armidex and Xgeva shots once a month.
What is going on????0 -
Hi Wanderingspirit, your numbers are definitely jumping but it not a huge amount but strange. Even if the PET was clear in MAY that was three months ago.........I think I'd stand with your onc about having that PET. As you know, with BC things can change very quickly so it sounds like your once want to stay on top of things and that's a really good thing so another PET will sow anything that shouldn't be there. I know it's all so frustrating being stage IV and having tests and scans so often can be a right pain in the .......well, you know what but come on, let's be honest here, wouldn't we prefer that our docs were a little over cautious than not cautious enough?
Big deep breath.....now, let it out slowly. Stop worrying and go get that PET........you will only make yourself sick with worry until you have some answers. As we all know, markers can jump around if there is infection and inflammation but you'll never know if that's the problem or something else until your onc can rule out progression.
Hope it all goes well and comes back clear.
Love n hugs. Chrissy
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Just got back from my treatment/onco appointment. GREAT news! Results from CT and Bone scans were all wonderful. No new spots, and "remarkable " healing of bone mets. Lung mets are totally gone. My onco was so happy!
Thank you Virginia and others for holding my hand, and your continued thoughts and prayers. Virginia, I hope you get wonderful results, too. In answer to your question, I have pet birds. Hard to pick a favorite because they are like family, but I guess it would be my Scarlet Macaw. (shhh....don't tell the others)
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🎉Yippee, BirdLady!! That I such wonderful news! I am SO happy for you. I'm sure we all are. Phew! Such a happy day. I hope you have plans to celebrate. I'm glad the hand holding helped, it always helps me so don't you dare let go yet! About ten hours to go till I get my results too. I hope they are as good as yours!
I would love some birds for inside. I had parakeets when I was in High School. For now I'm enjoying the fine feathered variety in my yard. I've got scads of hummingbirds right now. Went from about four or five to a dozen, all flitting about the yard. They make me smile! I also have a nest on my back porch. A pair of Carolina Wrens have two, maybe three chicks in the nest. I get such a kick of them and their antics.
I'll give you all my news as soon as I can. Keep holding my hands right!
Virginia
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Sweet Wandering Spirit,
I am sorry that you are feeling so frightened right now. I know nothing about Tumor Markers myself as my system doesn't appear to have them. I do know that they can be a wonderful thing or a unhappy thing and sometimes you don't know why. I have come to realize that, for me, almost the hardest thing about this f#%king disease is the waiting! I agree with Chrissy in that it sounds like your MO is taking every precaution for you. That is a great thing even though it sometimes means an extra test or two and more waiting. Having a proactive MO is a wonderful thing. So let him worry about which test to do or not to do. You just take care of yourself as best you can right now.
Get plenty of rest and maybe take a walk or two. Try to do something fun with someone or two or three friends who 'get' it & can help you laugh. Deep breathing and peaceful thoughts. We are all thinking of you and standing in a huge circle, holding your hands and surrounding you with our love and support.
Hugs,
Virginia
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My wife has metastatic ER positve, PR/HER2 negative invasive lobular carcinoma of the breast. I'm her caregiver. She is undergoing hormone therapy. One of her oncologist mentioned a new drug produced by Pfizer (Palbociclib) which is pending FDA approval. Some clinical trials are underway. He feels it could be a break-through drug. Has anyone participated in a clinical trial using this new drug, Palbociclib?
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Sorry to hear about your wife. I don't know anything about this drug but we do have an existing thread where you may be able to find out more:
https://community.breastcancer.org/forum/8/topic/8...
Wishing the best for you and your wife.
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Essexman, Welcome to our Community. I know that many of us have a special appreciation for Caregivers and are glad to offer our support to you.
I have not been on a Clinical Trial of Palbociclib my Oncologist is also very excited about it as a great breakthrough. She feels that it has the potential to turn some types of Breast Cancer from ongoing, life-threatening disease to a chronic ailment not unlike AIDS which can be managed, long-term! My Oncologist says she is more excited about this than anything that has come out in ages. She has actually had me feeling quite optimistic myself. If I recall correctly I think she thought they would be available in the next two to three years. Let's keep our fingers & toes crossed!!
I hope your wife is doing well and that her side effects are well managed so that you enjoy many sunny days.
All the best,
Virginia
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Thank you for your comments. Our oncologist believes this drug will receive approval by the end of 2014.
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Vadre _ I sure hope your right! I am on the trail and am patiently awaiting my next scan which should be mid Sept. My cancer centers (whole hospitals) cat scan dept is so backed up that wait lists are for 4 months now. Hoping this does not effect my required scans to stay in trial. My doctor asked that being the case can I get them done at a different hospital and the trial team said NO. Only that hospital or sister hospital related to this drug trial can do them because of the availability issues of being in trial and the Food and Drug Admin following the results so closely.Cathy
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I am so happy for you. Live long and well.
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Today was a very happy day for me!! I had an appointment with my MO to review the results of my quarterly scans... "No new activity seen anywhere! There is even a 20% reduction in the size of the new area of activity found on the last set of scans!!" My dear MO was all smiles as was my husband. You all know how I felt! So the switch back to the name-brand Arimidex seems to have done the trick for now.
Thank you so much, sisters! I felt your support all day. It was so special to know that when I came home and posted this message you would celebrate with me!!
{{{{hugs}}}} Virginia
PS I apologize that this is going to be repeated on several feeds. You may end up reading it a couple of times...but it will still be good news. 😃
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Oh WOW Virginia!!!! That sure is super news! Happy dancing for you!!!! Yay!!!!!
Love n hugs. Chrissy
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Whoo hoo Virginia!
Essexman - I've seen posts from several people in the trail; try the tread posted above and maybe try the Femera thread as well as that may be where I saw something about it.
Hugs to all,
Terre0 -
Congratulations to both Birdlady and Virginia..... GREAT NEWS, and now we are all relieved! Yay! I did think about both of you over the last two days and sent positive thoughts your way. I am so happy for both of you.xoxo
Andi
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Hi Lisa and Valarie. I got my scan results last week. Not good. More tumors in my lungs and liver, and the ones that were there, as well as my lymph nodes are getting bigger.
I am going to Dana Farber, in Boston, tomorrow to see what my breast oncologist's next treatment decision will be. I see my oncologist in Hooksett on Friday. I always go to Boston whenever I have a bad scan. Last time they had two different opinions of what treatment I should do. I went with Boston. She feels I should stay on the hormone treatments first before I do the chemo ones. I know she said that a clinical trial of a new hormone treatment was coming out in May and works similar to Faslodex, which worked for a year and a half for me. She may suggest that one. I will let you know what they say.
I am also on Gabapentin for hot flashes. I take two twice a day, and have been on it for 8 years, since my instant menopause after having a complete hysterectomy to get rid of those estrogen ovaries, after I was first diagnosed, at 43 and premenopausal , nine years ago.
Good luck everyone!
Lynne
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Yay, Virginia!! I am so happy for your great news! I have been thinking about you every day and hoping for the best. I am thankful that we held hands through this one. I really needed the support from all of the ladies here who are in the same situation when it comes to waiting for results. Andi, I really appreciate all of your positive thoughts! I know they help.Lynne, I'm sorry that your results were not as good, but my onco always tells me there are different options if what we are using doesn't work. I hope that your trip to Boston gives you new treatment options that will be just right for you. I will be thinking of you and sending positive thoughts your way, and of course holding your hand as you face and make new decisions.
Gentle hugs to all,
Birdlady
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