Hormonal Treatment for Stage IV
Comments
-
Darla, there are lots of options out there so ask your onc about them. You do not have to be in that much pain and discomfort! You can rant anytime you need to.
Love n hugs. Chrissy
0 -
I have been on Zometa for almost 6 years. My teeth are being deeply cleaned, but the dentist said I have great teeth and only some bone loss. Don't be afraid of Zometa..its worked for me!
0 -
Darla,
Faslodex will not affect your blood markers for at least 6 months. Now that isn't to say you shouldn't stop with the shots due to pain; but don't take the markers into account just yet. Did you do any of the AI's or tamoxifen in the past? Did you have pain and discomfort on them as well?
See what other options your team can come up with that gives you a good quality of life and stops this bloody cancer in its tracks.
Good luck,
*susan*
0 -
Okay, what is up with this generic Femara? I took brand Femara for 8 months before going on generic 12 weeks ago.
Maybe I'm crazy, maybe I'm imagining things... but golly, I just feel worse. I hurt more, the hot flashes are bothering me more, and I'm feeling gloomier -- like I have to fight a lot harder to stay upbeat. My weight is climbing a bit faster. And then there was the echocardiogram I had to have because my heart went berserk for a while -- as in, my resting heart rate hovering around 100 for hours on end even though I was lying in bed the whole time. Related? Who knows. But it started right after I switched.
Can I get a witness? Anybody else have a similar story? I see my onc tomorrow afternoon for the first time since switching and I'm really curious to see what she says is happening with her other Femara gals who have switched.
~lulubee
0 -
Thanks Chrissy,
Susan, I was on Femara for over two years and it caused me bone pain but nothing like this is doing to me. I walk three steps and have to stop and wait for the aches in my muscles and joints to calm down before I can take a few more steps.
The Femara had me NED for about a year but then it quit working and all my liver lesions are back slightly larger so that is no longer an option. Thanks, Ladies, I love you all. Darla
0 -
I have been on Femera almost 2 years. I was switched to the generic in late May. By July I was having issues sleeping. I would maybe get 3-4 hours a sleep per night - also had more aches & pains. I switched back to the non-generic formula and by mid August I was sleeping fine again. I told my oncologist what happened. I will not go back on the generic version.
0 -
Darla, Then clearly you need something else. That kind of pain isn't really acceptable. Any chance that aromasin would get you another year? :;grasping at straws::
lulu, you might want to check on the Hormonal area of this site. Lots of women have gone generic and some might be having the same issues that you are.
Tomorrow is my "show me your butt" day. I don't remember the number anymore.
*susan*
0 -
My recent scan showed alot of progession since being on Xeloda so my onc has switched me to Aromasin starting today. Anyone on this that could share their experience as to what I might expect?
0 -
I have been on aromasin since december 2005. If you read through this thread, I think there are a lot of reports, but I will give you my experience.
My side effects have not remained constant; changing as my body does. I have certainly had bone pain [feet and ankles], joint achiness, and fatigue. All of these to greater or less extents. I went from being post-menopaulsal to 70-yr old post-meno woman. [Or what I imagine that might be like.] My hair did do a bit of thinning, but in my case that isn't an issue. I had plenty extra. I have had insomnia, increased appetite.... well, every item on the list except for loss of appetite!
I found the first 6 months to be the most difficult, however, I was recovering from a harsh set of radiation treatments then as well.
And then there are plenty of women who have zero side effects. Will hope that is you!
*susan*
0 -
Talked to onc. today and told him I would not do another Faslodex tx, so if we could do something else on Thurs. that was fine but I won't take anymore of the shots. He said we were running out of options and I told him I was aware of that but almost a month after the last shots I still have large knots in my hips and they are still sore. He said we would decide something on Thursday and I agreed (but it won't be the shots). Gotta be your own advocate. Darla
0 -
Okay, I just got some really good news. WHEW. I like good news, more all the time, y'know?
A few days ago I posted here about all my problems with generic letrozole (above, on this same page 26), which I started taking on July 1st after eight months on brand Femara.
So here's my update:
My onc felt the prolonged episode of tachycardia which started a week after starting on the generic was enough to warrant "no substitution of generic" on my script. That heart scare landed me in the hospital for an echocardiogram during my second or third week on the generic. The echo showed a perfectly functioning heart, despite the fact that it was getting jammed at 100+ bmp resting rate all the time. As in, middle of the night I would wake up with it pounding away anywhere from 100 to 115 bpm. I was exhausted all the time from it. All my other side effects ramped up after the switch also, including more bone pain, hobbly feet, depression and anxiety, and more severe hot flashes. My belly was huge and my hair was falling out.
I'm telling you, I had a tail-whooping reaction to the generic. I've had reactions to several meds, so I'm not really surprised. And I don't want to scare anyone-- some of you may do just fine on generic.
FWIW, they were the pink (and c'mon, really? -- pink?) pills from Mylan.
However... I simply cannot afford my $358.12 copay for brand Femara. So I called the oncology patient navigator at my hospital for help. She worked with my oncologist to appeal my case to my insurance company. AND...I just got the phone call that the appeal was approved!! I will now get brand Femara for $25 copay per month for the next twelve months. Thank you, LORD! That means I can still afford all my supplements to fight this devil another year. No small thing!
All the garbage that happens with these drug prices and insurance companies is immoral. It's wrong that one woman gets her drugs for $4 a month and another pays $400. There are millions of us BC patients out here messing with this issue! Maybe we are not being a big enough nuisance!!
Even though I can start feeling helpless and defeated sometimes, right now today I'm saying NEVER GIVE UP, LADIES! Fight hard and fight smart. If generics mess up your life, see what you can do. Find out if there's a patient advocate in your medical world somewhere that you aren't aware of. Be a PROBLEM to your insurance company. Fuss at your oncologist and ask for an appeal! You just never know what bureaucrats will do to avoid messing with a fuming mad woman with zero estrogen. HA!!
~lulubee
0 -
...and a pounding heart! Lol.
SO happy for you!
0 -
After 17 months of FEMARA, I have progression. Switching to Megace next week after a PET scan. Anyone familiar with Megace? Jean
0 -
Greetings, I haven't posted on this forum before so apologize in advance if I'm repeating stuff already out there - I've read some but if I'm going to post tonight I'd better get started :-) I've done Femara for 4.5 years now. I went from pre-meno to full meno to over the top meno in about six months. I have my coping stragegies pretty fine tuned so for me this is what works on Femara (in order of what I consider the most important):
1. I take a Cox 2 inhibitor (Celebrix). Its an anti-inflammatory but there is some research out that it might make a difference for some metastatic lung cancers (at the nodule stage) and has a protective effect in breast cancer - I thought it couldn't hurt. My Dr's though are more interested in reduced bone/muscle pain 2. Keep Vit D levels high and test frequently - the moment my D levels drop below 100 I start to 'feel the pain' - there is also some research to support this observation. 3. Mositurize everywhere, all the time, and stay super clean - my skin/nails/hair/gums etc. etc. are like fragile paper - but it only gets ugly when I get lazy. 4. Stay cold especially at night. If the room temp is over 20 C I have hot flashes all night long - worse I don't seem to hit deep sleep at all. 5. Learn to manage anxiety attacks - not all the way there yet but using meditation so I don't feel so consumed by my fears - especially at night.I used anti anxiety meds for the first couple of years
And completely unrelated - I pretty pleased about the new results reported on Affintor and hormone therapy resistence. Anyone here doing Affinitor with their hormonal?
0 -
Sophie Jean, I've never even heard of Affinitor. What can you tell us about it?
I've been on Femara for almost a year now, and I'm grateful for your reminder about keeping the room colder (Texas is still HOT!).
How much D3 do you take per day/week? My onc says 50,000 IUs per week for me, but my counts are not anywhere close to 100 and I wish they would get there!
And also, do you mind telling what you took for anxiety? I am really having trouble with this because of some recent family troubles, and my PTSD is flaring again. I know I need to make an appointment to talk about some meds for this, but I've been dragging my feet and just hoping it would get better. And, uhhhh, it ain't.
Thanks-
~lulubee
0 -
Hi Lulubee, Its fall up north here (Canada), and while day time temps are warm its chilly and sometimes frosty at night. Its nice to be able to turn the air conditioner off and just crank open a window at night.
Affinitor is also known as everolimus and is already approved for a couple of different forms of cancer. These clinical trials are just reporting in and so far the news is all good.
http://www.medicalnewstoday.com/articles/234983.php.
This trial reports in on affinitor combined with exemestane but I've seen similar results reported when paired with taxoxifin. I understand Doc's can do affinitor off label so fingers crossed that access will be quick for ladies that would benefit.
I don't know much more but will be my first question when it comes time to change hormonals.
I also do the 50,000 IU's a week also and it seems after about 6 months I can drop back to bi-weekly. Any less and I start to drop levels quite quickly. Its funny cause I'm a gardner and no longer use any sun screen. I spend hours in the sun. You'd think I'd be so overdosed on D....but I'm not. Holding in the low 100's with huge supplements - but if thats what it takes.
Finally for anxiety I do Clorazapam at night to get to sleep (and shut my brain down). ativan during tests and for when it gets really bad for whatever reason. In terms of meditation I-Rest yoga nidra has made a huge difference. It was actually developed for PTSD soldiers and is offered at a local cancer support facility. I'm not sure though how I'd be doing in the face of progression though. I'd like to think I have more skills now but its also true that I've been pretty stable for a long time. I feel like I have a bit of a window though to do what I can to learn to be more "alive" and less eaten up by fear.So I try hard to practice often.
HOpe these answers help and I hope you're in a good place and Femara is working its magic for you also.
Best, Sophie
0 -
Thanks for all the info and insights, Sophie! Lots to look into. I haven't heard of that type of yoga before.
Enjoy your cooler weather up there! It's easing up down here a little, but we sure need rain.
~lulubee
0 -
Whoopie, I'm off the Faslodex and have started Aromasin. Still have sore knots in my hips from shots of Faslodex over a month ago. Onc. says we won't know if the new AI is working until Dec. My tm's had gone down but he agreed I didn't tolerate the shots well. Darla
0 -
mcbird - hope the Aromasin does the trick for you and that you can tolerate it better than the Faslodex shots. Keep us posted.
0 -
Before starting zometa,my onc told me to see a dentist and get my teeth taken care of.
I saw one dentist that was way too expensive,and then went to a second one and had 3 fillings. Had to go to get a wisdom tooth extracted by an oral surgeon.(Both dentists and oral surgeon very aware of SE of biophosphates.)
It's been 6 1/2 weeks and area is still not totally healed(I'm diabetic,so maybe that's why).
Last week got a call from onc's office;my health insurance co wanted 24 hr urine for creatinine clearance before they will approve zometa treatment.
Still waiting to see if they'll pay for the zometa.It's $1000 a month and supposed to be covered by Part B medicare as a medical treatment in the onc's office.
0 -
my doc routinely orders kidney functions before each zometa infusion. She also makes sure I have had my teeth cleaned within the last 6 months.
0 -
Hi there,
I have been through a bit of an adventure since my last posting. Had a really sudden bout of ascites - one day everything was fine, I even went running, next day, of course while on a four day journey, I suddenly had a huge belly and felt quite sich. Somehow survived the four days and back home was hospitalized immediately, first just to be punctured to get out the fluid, but then they decided to keep me there and do chemo straight away. Chemo was still on when results from testing the fluid came in which showed bacterial infection! So they gave me two antibiotics on top, through the vein, and told me I had to stay until infection markers went down. While still fine and quite fit even with my 6 months-baby-belly and for the first days in hospital, chemo plus antibiotics eventually knocked me out, and when I finally got out after a week, the first oral dosis of the two antibiotics had me totally sick (it might also have been a stomach bug), anyway, those were some terrible days...However, things have improved, I have even been back to work! I lost more weight than ever in my life and find it hard to put it on again, still feeling sick very easily.
Now one interesting information: I thought I had to move threads, because surely I would be taken off Femara while being on chemo (carboplatin with taxol), but no, I was told to keep on taking it. Because, strangely, my tumor markers had been going down slowly but clearly and the CT they took after letting off the fluid, actually showed stable everywhere else, so the Femara seems to do its job - they have no idea why the ascites and the infection came at this moment in time.
I never heard of any case here on the board of chemo and AIs being given at the same time, but it seems logical to me, because with chemo we want to get the cells that do not have hormone receptors, and with rising hormone levels without the AIs the cells with hormone receptors would thrive again and be the ones killed by chemo.
What do you think?
0 -
Susa,
I think you lead an interesting life. Your lastest adventure is like nothing else that I have heard!
I always gets very ill when given antibiotics, but the rest... fluid, chemo, AI's all while in a hospital are totally new to me. Never heard of such a turn of events. Especially a chemo in combination with an AI.
Glad these days are behind you. Are the doctors worried about your weight loss? This is a side effect that I have never had. :-(
*susan*
0 -
Susan,
that´s it, really interesting!
And it´s not the first time, actually it happened to me twice during my first chemo 5 years ago - they kept me in hospital once because of the flu (I didn´t think anything of it but they seemed to worry), the second time because of strange bouts of fever that disappeared as quickly as they´d appeared, which was a bit scary. And last February with the 8 cm ovary met, the same story, they had a look on the U/S and sent me straight up to the ward for op next morning.... And in the 20 months since then I haven´t missed a single day at work, never bother with common colds or back pains and things like that...
No, it´s just me being worried about losing weight because just thinking of the next chemo makes me sick...I couldn´t eat for 10 days...I used to do very well with the medication against sickness, and I know I will again, because all this sickness I experienced this time was mainly due to all those pills I had to take. The terrible taste in my mouth made me gag when I tried to eat something. So I lost about 5 kilos and I am wearing my daughter´s skinny Teenage jeans right now, which is fun in a way, but I can also tell I get very weak, there is no reserves, if you know what I mean. And when I don´t eat enough I get sick from not eating.Right now things taste good and I had a large piece of chocolate pavlova tonight, that will probably do the trick!
.
0 -
Susa, I'm sorry to hear about the latest turn of events. (I'm just back from a sailing vacation and still feel woozy from my trip.) My understanding is that chemo reduces estrogen levels because it destroys ovarian cells which produce estrogen. Since you have had an ooph, maybe that's the reason they combine it with an AI. Glad to hear, however, that you are stable!
0 -
I am quite sure I am going to be going off Xeloda since my tumor makers went up yet again.....4,181.9!! if you can believe that. And then the CAT scan showed that the liver tumors have increased in size and number and they are talking about a conglomerate mass so I don't know if that means a bunch of them are globbed together now or what. I have not talked to my onco and doubt if I will before my appt on the 26th. I will get a new bone scan this coming Wed. As usual I feel fine and look healthy and my liver function is still perfectly normal so I am not in a panic.
I doubt if my onco has even looked at my scan report, However, I did hear back from my onco at MDA. He is just wonderful about responding quickly and I am just waiting for him to tell me if he feels I should go back down there as I would be perfectly willing to stay awhile and do any testing there they might feel necessary. He said he wants to review my records and will get back to me, but get this.....he mentioned Androxy which is actually like testosterone so IF I try that it says SEs are weight gain, facial hair and deepening of my voice......Great!!.....but I guess I could start WW the way I did when I tried the megace and that went pretty well, didn't lose, but didn't get fat either.....and I could do waxing....the voice, well, I guess it could maybe be just husky to the point of being sexy? Trying to think positive here. And also he mentioned highdose estrogen which I know my onco is totally opposed to.....however as crazy as it sounds for someone who has tumors that are fed by estrogen, I have head of cases where it worked. So I may be doing hormonal treatments of some sort again and will be back on here as a regular if that is the case.
I am thinking there is someone I get treatment with who gets chemo along with faslodex....or maybe it is herceptin she gets, but it is something in an IV.....I will ask about this when I am there again.
Cheryl, Did you get your dental treatment completed? Have you seen that thread about root canals and breast cancer......having worked in the dental field for over 40 years I find it a pretty crazy theory myself, but to each his own.....guess we all have to find something to blame it on. I myself think it's just the luck of (bad luck) of the draw.
0 -
Marybe - hope you can find something that will bring those numbers down. I know they are really high, but I know that even if they go higher like mine were, they can be brought back way down with the right treatment. I just hope you find the right treatment soon. I am glad to hear that you are still feeling fine inspite of the numbers and the results of the last scan. Take care my dear friend.
0 -
Marybe, waxing is not so bad. I've been doing it ever since the ooph + Femara came along.
And if you want some good coaching in using a deep voice to your best advantage, just watch Suzanne Pleshette on those old Bob Newhart episodes! "Oh, Bob!" I'm noticing that alto is getting easier than soprano these days, myself. Oh, well, at least I'm still here to sing, right?!
Hang in there... I'm believing those markers are gonna start to fall soon!
~lulubee
0 -
Oh yes, Suzanne Pleushette.....had not thought of her for awhile although I did see some movie where she was the mother not long ago. Bob Newhart was the doctor in one of those stories in Five, the movie Demi Moore produced for breast cancer awareness month.
Oddly enough I am not too upset about my scans or numbers since I feel I had been having an extremely good run for a long time. If I had pain or aggressive cancer, I would be worried, but so far so good.
0 -
Another set of injections today. Last month Nurse Linda aimed those little suckers higher up the butt. Just about around the panty line. The pain of the injection was less, but the big surprise was that I had almost no soreness in the next several days. This month I requested that she try this again. Again less pain during the injection. The soreness, well, will just have to see.
Time for my post Faslodex nap. Right after the impending hot flash.
*susan*
0
