Hormonal Treatment for Stage IV
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hey Romansma. Thanks for the info. I hope your Pet turned out ok.
Dee
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Lynne,
Hoping for good news with your scans! I'll have mine mid August to see if Femara is working. I also have mild to moderate hot flashes. Worse than when I was on Tamoxifen. Has anyone else had gabapentin for hot flashes? I take a low dose at night to help me sleep.
Lisa
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Hi Lynne!
First thing is to say that I wish you the best of luck. I am on Faslodex (that shot certainly hurts!), femara and zometa and I have a decrease in appetite but I don't know if thats the pain because I fractured my vertabrae (bra?) also. I had terrible side effects on arimidex 5 years ago but seemingly none on femara. Seems like nothing is predictable so all ought to be tried. This is all so scary some days and other days I have a lot of peace about it. I see you live in Manchester...do u go to Boston for treatment? Keep us updated!
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I like your quote Lisa! Seems so right on the money
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I have been on Femara for about a year and my tumor markers are starting to rise so I have a PET scan this week to see what is going on.
Reading your posts, I wonder why my Dr didn't put me on Falsodex with the Femara? I was on Tamoxifen for a year until it failed and we switched to Femara. Just now I am wondering why he didn't add the Falsodex. I have widespread mets, bone, GI tract, too depressing to list them all.
My Onc mentioned switching to A/A if the PET indicated progression. My markers have been true indicators of disease so I am bracing myself for bad news. What about Arimdex instead of A/A? I will certainly ask my Onc, but I wondered if anyone here has experience or knowledge about it.
Good luck to everyone awaiting scan results. It sounds like there are a few of us!
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Starbrightlyshines, it is a good question for your onc, but I can tell you when we were first talking treatments, my onc said she prefers to do hormonal therapies one at a time because it lets us know if one stops working so you have a better idea what to go to next and you don't keep getting a drug with side effects that isn't doing you any good anyway. I can see other sides of the issue, but that made sense to me.
Hope that helps!
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Hi Ladies, trial is going pretty good. Had my first blood work last Thursday and was told everything looks good. All ECG's good and only thing that was not good was low sodium. I do notice I am having extensive bruising where I do my insulin injections. That could mean I'm getting the real deal vs the plecbo but hard to tell. Increased hot flashes now too.Cathy
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Thank you Roses, it sounds like something he has said in the past. We talk about so many things that I often don't remember the details. I will ask again. I wonder if Femara did fail, does that mean I could go on Falsodex or Arimidex? He made it sounds like the next thing would be A/A.
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Zoladex question - Anyone in here been on Zoladex and delayed your monthly injection for traveling or other issues? I plan to take a family vacation and have to coordinate it with my infusions, so I figured Zoladex would be the easier to get while out of town. I didn't realize you can't order it to a regular pharmacy (as I was planning to have it administered at a internist's office that I know who will be near where we are staying). My MO is comfortable with me delaying it the 10 days until I return, but I tend to be neurotic and thus am feeling uneasy about this. Anyone of you ladies delay yours or discuss it with your doctors? Thank you!
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Hi Starbright<
So sorry for all your stress and overwhelming results....awful. My onc put me on Faslodex and Femara because he said to hit it twice when I had no side effects with Femara gave me better chances. I trust this guy with my life so I do what he says but I don't have any technical info to pass along. I know he doesn't want to do chemo or radiation til all else fails. I am so game with that. Everyone and everyone's body and cancer is different but i know I feel a lot better when i ask as many questions as I have. I like to write them down before i go. I tend not to ba able to think when i get there! I am getting my second Faslodex shot tomorrow so look forward to 10 days of a sore ass! What is A/A by the way? And Cathy, I hope you got the real thing (what is that by the way?) Good luck and God bless us all!
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Valerie - I'm in the palbocibic / Letrozole drug trial. There is a thread here if you want to know more search palbocibic. It's Pfizers drug study for stage IV bc post menopausal women as a first line treatment. My oncologist said very promising findings coming in so far.Cathy
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The results of the bone scan was inconclusive. There was a tiny spot on a rib but even the specialist couldn't say what it was. I guess I can consider it good news. My onc has decided to take me off Femara and to begin giving me Faslodex injections. Will see how it goes. Hope all is a having a good day
Highhopes
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That sounds like good news to me, high hopes. Come join the fanny pack over on the Faslodex thread.
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sandlee, thanks I will join the fanny pack on the Faslodex thread.
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Me too. Got my second Faslodex shot yesterday. MUCH less pain....different nurse put it in a better spot but nausea this AM. I'll also join the other thread. Thanks!
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Hi Ladies, just got my scans back (the results) yesterday and my lung tumor is bigger, as are the spots on my bones plus new ones on my skull, in the 2.5 months since last scans. Markers are up to 480. Doc is taking me off A/A combo and starting me on Faslodex as of yesterday. I'm thinking this is going to be like the little kid roller coaster ride, slow ups and downs, although I am waiting for some stability or better yet backwards movement. Sigh.
I'm not taking xgeva because of the sorbitol. And I'm not getting any more Zometa because of the side effects.
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Skylotus, I will send up some especially fervent prayers for you....Carolyn
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Syklotus - my immediate reaction to your post was unprintable obscene language. So...humm...politically correct - darn it! THAT SUCKS! I'm sorry you're going through this. Sending good thoughts your way for Faslodex = no progression and markers down.
Hugs,
Terre
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thanks Kiwi and Car,
And I'm doing all the alternative therapies as well. So now I'm thinking, heck with the special diets, I'm going to eat what I feel like eating! I don't eat junk, so I'm not going to get too crazy here! But, I'm going to have that gelato if I feel like it! ;-)
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skylotus,
I'm all for healthy eating but I also think enjoying life is important. I don't live on gelato, cookies and wine, but if I want those things, I eat then with gusto and no guilt. Take care.
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Hi SkyLotus.....I'm sorry to hear about your scans, but hopeful that your oncologist will find the right combination. I've changed hormonal therapies no less than five times in six months trying to find one with limited side effects (is there such a thing?) but my scans have all showed stability. She finally sat me down about a month ago and told me I had to "stick to one protocol"....I was thinking, why? It's working! Unrealistic, I know. Anyway, one of the things that this board has taught me is that there are so many different options available, so perhaps Faslodex will be the one for you. I love that you sound so calm about it and I am curious as to what other alternative therapies you are doing. And as far as diet - definitely have that gelato! My personal favorite is sea salt chocolate.
Keep us posted!
xoxo
Andrea
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intothewoods - just seen your question about gabapentin and yes I have taken it for hot flashes and it helped but minimally. My onco told me if my hot flashes return on femara as bad as they were on Tam then he would give me Effexor (suppose to be quite effective). My hot flashes have increased but not nearly as bad as with Tamoxifen.Cathy
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Hi ExBrnx and Andi,
I am really grateful for the threads and all that post here. I feel like it's the only place I can go and people really get it. What this is all about. I'm coming up on one year and I'm starting to settle in with a little less anxiousness, that this is life. This is my life, and unfortunately it includes a Stage 4 cancer dx. Again, thanks to all who post here and share. It's great to be able to lean on each other.
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Seems that this has been a season of up/down/all around for many of us! I was relatively recently diagnosed, last Nov - with occult BC that appeared first in my gut. I was put on Femara, changed briefly to Arimidex to try to limit the SEs, but they seemed even worse so back to Femara. After a couple of months on Femara, though, my SEs have returned with a vengeance: joint pain and stiffness to the point of immobility, and acne/rashes everywhere as well. My MO seems puzzled and is sending me for ortho and derm consults although both problems have arisen since my dx; I had a PET scan in May that showed NP. I'm wondering if maybe the source of my generic Femara might be a factor: I've heard that the inactive ingredients can affect tolerance of the med. Any info that you can provide would be most welcome - I'm trying to focus on playing Sherlock Holmes to keep from running down the street screaming like a banshee!
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Dear Critterzmom.
As I have previously posted, I am doing beautifully with brand name Arimidex. I did not feel well with the generic from sun labs in India...I strongly encourage people to look into the brand name vs. generic...I know that there are limitations for insurance and money...For me it is important enough for me to pay out of my pocket for the only thing that stands in between me so far and progression. Don't know anything about Femara but I would encourage you to google your drug's manufacturer and find out information..There is a lot more information out there than one would initially think. Carolyn
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Critterzmom, I take the brand name Femara and have had few SE and none, other than hot flashes, that hung around longer than a month or two.........Arimidex on the other hand gave me the worst SE. I was stooped over because of pain in my back, I was in such a deep dark hole mentally......totally not like me at all......and I stacked on so much weight which made the joint and muscle pain ten times worse.
Please check out the brand name as even though the drug is the same in all the fillers used are different and it is they more than the drug itself which gives us the the SE.
Love n hugs. Chrissy
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I am also a 100% supporter of brand name formularies. I was switched to generic Arimidex and my SE went wild. A return to brand name has got my SE much more under control.
Carolyn, Arimidex Direct will sell you the brand name for $90 for a 90 day supply, straight from the. US manufacturer.
Skylotus,
Thank you for expressing my feelings so well. These pages have made such a difference for me. Seeing you all live your lives with such grace and strength is such a gift for me. It gives me such confidence.
Virginia
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I so agree with Crissyb. I did so poorly on Arimidex that I thought that letting the disease take its course was how I was going to go. I switched to femara when the BC spread and have some joint pain but totally tolerable and the depression lifted COMPLETELY! I actually feel pretty good oddly enough! I am so surprised. I can live life one second at a time and enjoy all the little things i missed before.
I am also doing an acupressure energy therapy called TFT (Thought Field Therapy) which addresses the emotional blockages that make and keep us sick. I am not a hoopy kind of person but I feel a lot better since I started it. I also do some acupuncture and as soon as my spine heals I am gonna start yoga. I am going to work on quality of life as well as prolonging it.
There are also soooooo many treatments that we just have to try and keep pushing through. Because one doesn't work, there are meds of the same sort and meds that are totally different. Even if there are a lot of tears, make sure you notice and hold onto the positive moments. There are those which cancer can't even touch. Love you all.
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Valerie,
Thank you. "There are those which cancer can't even touch." Amen to that! Those are the moments we keep pushing through for. I had my teeth cleaned a couple of weeks ago and, while driving home, chuckled because a couple of months after my diagnosis I would have thought I was never again going do something normal like getting my teeth cleaned! I guess it's all relative. Keeping it all in perspective and pushing through. The name of the game.
Virginia
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Valerie yes I was moved from Arimidex to Femara because of progression but I was truly miserable for fifteen months before that happened. The nice thing was, about two weeks after the swap, my two daughters said it was nice to see me laugh again as they hadn't heard it the whole time I was on Arimidex. It is in my nature to laugh every day even if it's at a look that my dog gives me.........sometimes I swear she can read my mind and over the years has developed these expressions that just crack me up!.......oops! I digress .......
we are all different and for some Arimidex is perfect and Femara is the monster but I do feel, and I say this through experience, that these generic meds, although good for the pocket are not necessarily good for every one but in order to find that out, we have to try them. I am to the point that if my pharmacist gives me a generic in error (I have a no generics notice on my account) I hand it back and say no thank you if you are out of stock of brand I will wait the two or three days it takes you to get it in. Sometimes he doesn't like me but that's not my problem I just refuse to take generic anything.
Love n hugs all! Chrissy
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