Hormonal Treatment for Stage IV
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It is rather comic on the little things that can get us so excited! Having accomplished the standing up and putting pants on, I think I have a ways to go before I try socks...shaving the legs in the shower is still an adventure, I can do the left one now but somehow, that darn right one requires after shower major touch up...lol I gotta laugh...one nice cleanly shaven leg and one patchwork quilt - it looks like a drunken farmer took his John Deere to the field...
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Hi! Has anyone been on the drug Megace? My doc just put me on this after I had a severe reaction to my 8th round of carboplaten. Have already tried tamox, arimidex and faslodex. Really would like to know how it is. Thanks,
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Hi! Has anyone been on the drug Megace? My doc just put me on this after I had a severe reaction to my 8th round of carboplaten. Have already tried tamox, arimidex and faslodex. Really would like to know how it is. Thanks,0
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Sbraatz, I was on megace for about 6 months....the onco I consulted with at MDAnderson wanted to try it since I had been very receptive to hormonal treatment in the past....alas it did not work for me, nor did aromasin which I did great with the first time around. Megace is actually a pretty old treatment and they used to use it before they came out with tamoxifen....the main SE is weight gain....in fact it is used for that, to help people who have no appetite or need to put on weight. I was warned about this so went on WW the day I started the megace and I was able to keep my weight under control and only gained about 3 lbs. I felt good while taking it and even though I was not looking forward to gaining weight figured that was a small price to pay if it worked, especially compared to some of the SEs I had with chemo. Hope it works for you.
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Thanks, what are you on now?
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I haven't posted anything in a while on this thread since I am doing Radiation txs in addition to the hormone treatment. I found out today that the RO increased the number of treatments from 10 - 12. I go so sick after #3 that they back off the amount I was getting and added the 2 extra days. I still get sick, just not as bad. I get the hiccups, then a pain in my chest then the nausea sets in and after I throw up I feel fine. Until the next round of hiccups. They gave me something to take for the nausea and something for the hiccups, but so far neither has done much good. They have told me the pain in my chest is gas and this stuff they call mouth wash is supposed to help get rid of the gas and ease the pain. They told me not to swish it around in my mouth and just to swallow 1 teaspoon every 3 hours. I don't know why they call it a mouthwash. It taste nasty and numbs by tongue The pharmacist made it with Cherry flavor and it still taste nasty, but is a little better than the plain stuff. Anyway I will be done with this round on Friday 12/3 then that afternoon I am off to the beach for the weekend. Hope everyone has a wonderful Thanksgiving and enjoy being with family and friends.
Amy Jo
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Sbraatz, I am presently doing navelbine and also get zometa for the bones.
Amyjo, You rest up for next weekend. Sorry the rads are so hard on you.
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amyjo,
I've been wondering how you are doing. So sorry you've had some problems with the radiation, but, hopefully, things will improve.
Just get away and enjoy, and try to forget the sad things.
Happy Thanksgiving, and hugs to you,
Lane
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The ucky mouthwash works! I have not been sick today and only has 2 very weak hiccups all day. No pain, or nausea today so I got to really enjoy a wonderful Thanksgiving dinner. I kept the portions small and ate slowly so I finished about the same time as everyone else that got plates piled high. The smaller portions were just enough to keep me from eating so much I would have been miserable. Really enjoyed the day with friends, had lots of laughs as well as all the good food.
Hope everyone else had a wonderful Thanksgiving. I feel so much better and I got the best nights sleep last night. I haven't slept that good in about 2 months. New mattress does wonders, it is so comfy.
Marybe - I will definitely get all the rest I can so that I will be ready for the weekend. So excited about going and getting to meet everyone. I am off to bed as soon as my Texas Aggies beat UT. Gig' em Aggies!
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Howdy Everyone! Hope all had a great Thanksgiving!
I am in work today...I think I am one of two people on my floor but this crap used up my PTO time soooo, I can't afford a day with no pay so close to Chistmas.
And now...(drumroll please) for the scan results! THE SAME...drat! First, the great news...all still in the bones. That is enough to do the Happy Dance! But, once again, some resolution, some shrinkage and mild progression. Geez. The good part, the Faslodex is shrinking the one stubborn lesion and resolved others and of course, kept the spread confined to the bone only. The down side, mild progression. I am such an oddball - even my onc is finding it confusing as none of the new things showed up on the MRI from June when I was having the numby arms thing. We talked a bit and I did suggest the adding the Arimidex back in and he was hesitant - it is relatively new thinking but, I know him and he will be checking into it. He is 70% sure it is real new spots but he has that 30% that says it might not be soooo, since I had only had 2 of the double shots of Faslodex and it is known to be slow to work and that it DID have an effect on the largest of the lesions (2cm down to 1.5cm), we both decided to stay the course, get in another two rounds of the double shots and do an MRI in February to see what is really going on with the bone. I think the most puzzling was a new spot on C7 - given the neck issues that were causing the numb arms and the fact that is has gotten under control and there is no pain there and nothing but sprinkles showed on the MRI from mid June - allowing the Faslodex a little more time seemed a good option.
My thoughts are that it is likely that suppression of both forms of estrogen expression could be the solution since the Arimidex did allow only the one lesion to grow - I still have positive receptors but they do seem to act differently. *susan* - with you being the only one I know of on here that has taken that path, I think you can be confident that the Faslodex will act on the areas that the Femara didn't and the Fermara will keep in check what it already has shown to do. A question...I know I saw an article just recently on this but do you think I could find it in time for my onc visit? Good 'ole fade brain at it again! Most exciting is that the Faslodex did hit the stubborn lesion and, I feel bad sometimes saying this on here - it is still in bone only so...not stable but I think it is a scan worth letting out a bit of Woo-Hoo - and that L3 pain WAS healing pain! Thanks to all of you for all the support - it was the shortest scanxiety I have ever had but I have to say - around 10:30am on Wednesday at work knowing I was leaving at 11:30 for the appointment - it was the longest and most stressful hour I have spent in a long while (well, what is long - with this crap...long is only a little over a year ago when I was first dx'd) I thought I would barf I had myself so worked up. Once I got to the clinic, well, I slipped back into my 'somewhat troublemaking' self and had a good time with treatment - particularly with the newly aquired massive technacolor bruise on my butt from falling on the ice - first the onc got a peek and then my nursey when I got the shots - she was very kind to avoid it as it was right where they would usually stick me. What a wonderful treatment team I have - if any of you are not happy with yours - do try to get into a different place...it so makes all the difference!
AmyJo and Marybe...enjoy the beach! And AmyJo...you WILL get through this...so glad Marybe's suggestion of the mouthrinse helped and you got to enjoy dinner.
Lane...as always, hugs to ya!
sbrastz...wishing you success with the Megace...I don't have any experience with it so can only send you a cyber hug!
*susan*...I like your onc's thinking...and I believe that mine will come to the same conclusion - he always goes off and looks into anything I bring up - especially since it is rather odd that each type has done different things, I believe there is a good arguement for giving it at least a 3 month try after we look at the MRI. No talk about the new Denabaum (sp) for the bones - apparently he is quite satisfied with the results I am getting from the Aredia - bones are pretty strong if I didn't break anything with the fall on the ice - honestly, I am surprised I didn't...LOL.
And to all the rest of you anti-hormonal guys and gals...let's Woo Hoo our way into the new year!
LowRider
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Low,
I've been thinking about you and hoping that you got your results on Wed. as planned. I think it sounds like pretty good news and you have options after reviewing the next scans.
Didn't know about the fall on the ice. Damn! I did the same thing 3 years ago and broke my leg. The bone builders must do a good job. Maybe I wouldn't have broken mine if I had been on Zometa at the time.
Well, I think the AI's still sound very hopeful for you. At least it's still in the bones. I agree that having a great relationship with your healthcare team is so very important.
Hope you can enjoy the rest of the weekend now and we can all woo hoo through the holidays. Let's try to let loose a little and forget scans for a while!
Lane
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Low,
Have sent you my Onc's name in a PM in case your onc would like to touch base with him.
*susan*
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Low, great news!!! WooooHooooo!!! jumping fpr joy here!
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Lowrider that's great news! My onc is hesitant too in using faslodex with femara as there are no studies to date that show they work well together. Faslodex is also an estrogen antagonist, as is tamoxifen. Studies did show that using tamoxifen AND femara significantly decreased survival, hence not a good idea for that combo. There is a phase 2 study (NCT00206414) underway studying Arimidex + Faslodex + Iressa as a combo. The prelim results should have been out by Jan 2010, and final completeion is expected 2012 (...mmm sounds like a long time from now)....I too want to know for sure as I have mets in more bones in my body than not, and I can't afford for this disease to extend any further (otherwise I'm in very deep S___T!), xox
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That is good news! Mild progression is better than wild progression. It sounds like everything may hold steady. You've got me looking forward to February when I hope to hear everything is stable! I'm starting to think the double-shots are where it's at. I get scanned next month after 2 months of double-shots so keep those fingers crossed.
Karen
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All you ladies with bone mets, I am with you. I am afraid to step off a curb without holding on to something or someone. I think if I ever fell I would be like Humpty Dumpty and break into a gazillion pieces. Hopefully the Aredia will work for me. I have not seen my onco since the last scan and he went to India for a few weeks. There are other onco on-call for him, but I would rather not think about it until my onco gets back and I talk with him.
The radiation is helping the most painful place in my back, but it is making me so sick. They have discovered I am one of those that do not tolerate getting zapped very well.
Hope everyone gets a restful evening and has a joyous day tomorrow.
Amy Jo
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Lowrider,
just read your long post a page back. If I don´t get this right it´s because I haven´t read the three million previous posts - sorry! But have you only started Faslodex a short while ago? You´ve only had two rounds or so? I am asking because your saying, one bone met has grown. Same happened with me: On the first CT after starting Faslodex there was one spot that had grown from 0.3 to 0.8 cm. My onc said it could be that the actual healing of the bone is making it look like it has grown while it has actually died! The cells were invisible while alive and now that they are dead, they become visibile. On the next scan, the spot hadn´t grown any further.
So I think your onc is right to recommend waiting a bit longer to see how it works and only add the AI when you´re sure. We have to cook this low, don´t waste our chances.
By the way, I am on Faslodex, too, since february. From May onwards my TM was slowly rising. After rising continuously for four months he finally gave in to my pleas and gave me double dosis. And the miracle happened - immediately the marker dropped, twice by now. Will have new results in two weeks - hoping for the best....
As to taking an AI parallely, my onc´s so conservative, I am sure he wouldn´t let me do that. But there is still a box with two months worth of Arimidex in my cupboard, my secret weapon. (only took them for 6 weeks a year ago until my hormones came back),. If need be I would just take it and see what happens, at least that´s my little rebellious thinking....
All the best
Susaloh
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Hi Susaloh...
When the Arimidex allowed the one lesion to grow at L3, I was switched to Faslodex in June 2010 even though there was complete resolution of some spots and shrinkage of others on the Arimidex - this one at L3 doubled in size. Faslodex was only approved as a single shot of 250mg at that time. In late September, I got a call that the FDA just approved Faslodex as a double shot, 500mg and Oct 1, I got my first double dose. I had the PET scan on the 22nd of November which showed new uptake, resolution and shrinkage. Since I had only had 4 single shots and 2 double shots of the Faslodex, we elected to continue the double shots for 2 more rounds and do an MRI to see exactly what is going on. The fact that it shrunk the L3 lesion was a very positive indicator and Faslodex is slow to work so we shall see in 2 months what is really happening. Another good indicator is it has remained in the bone only.
The adding back the other suppression of estrogen expression (Faslodex suppresses the estrogen expression in a different way) is new thinking and depending on the anti-hormonal, there are contra-indications with Faslodex so it is something that will need to be looked into more closely. The only gal that is doing it on these boards is taking Femara with a single shot of Faslodex. She has her scans soon so I am very curious to see how she is doing. My onc was reluctant to jump on anything until we see the MRI which will look more closely at the bone itself - I have mets sprinkles all over the place in my spine, some in the pelvic area, one on the clavicle and sternum and 3 ribs - only a few are even measurable so when the uptake increases, it would seem to indicate progression but it could also be a sprinkle healing. The sternum is surely arthritic in nature as I broke my sternum and 3 ribs in a bad auto crash in 1977. I am 56 and I have often had achey sensations there when the weather gets cold.
I am so happy for you that it is working! You give me hope that just a little more time and I could be messing with the Stable Boy! Wow! Thank you for sharing!
Hugs....LowRider
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How are you tolerating navelbine? Dr wants to put me on xeloda and navelbine.
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Sbraatz, I assume you as asking me since I don't know if anyone else is on navelbine....I tolerate it just fine. Hardly any SEs. Constipation is really my only complaint and I take senna S so that takes care of that. I have slight neuropathy in my feet, but nothing compared to what I got from Abraxane. I do think it was causing me to have heartburn or acid reflux or something right after the treatments so they put pepcid in with my premeds to control that. I know sevreal women on xeloda who are doing well with it. I probably should add I no longer think the navelbine is working, but my onco does so until we switch or do the procedure he wants to do on my liver, he is keeping me on it. My onco told me it was a gentle chemo when he started me on it and I thought Yeh, right, like there is such a thing, but honestly he did not lie. Of course, each of us react differently, but for me it is gentle. I get it weekly.
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MaryBe - I have been doing acupuncture for my neuropathy in my feet and it is fantastic. I've had two treatments and I hardly have any pain left. You should try it. Thanks for the infor on navelbine and xeloda. I appreciate it.
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Hello,
I'm writing for my 68 y.o. mom, diagnosed Oct of this year with breast CA and mets to bones (all at once)--skull, hip, right/left shoulder, etc. etc. No mets elsewhere...her onc has put her on clodronate pills and letrozole--no chemo (yet?)...wondering if this is a common treatment for someone in her condition? The absorption of clodronate tabs seems pretty low, wondering if she should be on an I.V. bisphosphonate??
Thanks.
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Hi support4mom...typically, bones only mets is treated differently, saving the big guns if the gentler treatments are not effective. I am sure they have scans in mind either at the 3 or 6 month mark to determine her response to the treatment and will make adjustments at that time. That is how it worked for me.
Bless you for being there for her - be sure to have yourself listed for access to her medical records so you can assist in monitoring her progress. HIPPA rules are tough.
Hugs...LowRider
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good reminder on the medical access forms. I always forget and it is so important.
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Thanks for the info LowRider...I will def make myself listed for access to her records.
I can't imagine NOT being there for her--she seems so thankful for the smallest things I do--I know she'd do anything for me.
Thanks again,
S4M
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support4mom, your Mom has to fill out a HIPPA form for each of her doctors in order for you to have access to her records. My Mom has one filled out with her GP, Oncologist, Rad Onc, and Orthopedist. I can get all her information in each office. I wish one form would cover every doctor, but they're all separate.
Peggy
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Mom lives on Vancouver Island (Victoria, British Columbia)--not sure what the protocol is regarding access to med records but I'll certainly find out. SCD--it's unfortunate (and silly AND impractical) that you have to fill out a form per doc...
And I just want to add that this forum is the one source of hope I've managed to come across since learning of Mom's diagnosis, you women are ALL amazing, and supportive, and caring--Google is not always your "friend"
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I hope it's easier to get medical records in Canada. We have to jump through hoops here in the U.S. to get them released to relatives, etc. I'm in the same spot as you, S4M. I know just how you feel. We need to be as fully informed as possible to make sure our Moms get the best medical care.
Peggy
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I am almost too embarrassed to ask this question, but for the other Faslodex gals, is your butt just plain tender? A few times, injection sites are painful, but for the most part I just hurt. Anyone else?
I have no 9 this week and am dreading it just a bit. Not a big pain-lover.
*susan*
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Just got 2 more today and I think it definitely has something to do with who does the shots. I had a new nurse today (Nurse Summer) and she popped both those suckers right in and got them done badda-boom badda-bing. They were stinging a bit at the time, but they feel just fine now, which is kind of new for me. If all goes according to plan they'll be itchy tomorrow, but they're definitely better on the tender pain this time.
Bad news is oncologist hinted that he doesn't think this treatment is working. I get another PET in a couple of weeks and I get the answer on January 3rd. nertz.
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