Hormonal Treatment for Stage IV
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Hey Jill,
Welcome, sorry you have to be here, but we are all in this together and have plenty of hugs, encouragement and ears to listen.
The pain in my tail bone is arthritis and they are not doing anything other than the pain meds for that but the pain that is up higher, just below my shoulder bladed is the area that is so painful and will be getting zapped. I thought they would have started by now but this seems to be a much slower process. Had the consult, new bone scan, form and markings, virtual run, then finally the radiation will start. I had hoped to have started the rads last week, but it looks like it will be next week for the virtual run, then the next Monday the rads will start. I am going to call my FP to see if he can get things on a faster pace. I really wanted to be done by Thanksgiving, but now it will December, maybe I'll be done by my birthday. If this is not speeded up a little I may be looking for an new RO.
Time for me to go to bed or I will not be able to make it to my physical therapy session tomorrow, er uh. later today. Night all have a restful night.
Amy Jo
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Hi Amyjo,
I guess things don't usually run as quickly as we'd like. I certainly hope all is finished by your birthday, then you can really celebrate.
Guess we are 2 "pain in the asses". What are you taking for your pain in the tailbone? My onc thinks mine is arthritis, also. Jeez, it's taking over my entire body, it seems! I'm just taking ibuprofen for now. It doesn't really hurt except while lowering myself to sit down, and again when standing from a sit. Maybe I should just never rest? ha, ha.
Good luck with everything next week!
Lane
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Amy Jo...just an fyi...at my initial dx, I never could get the recon finished...left the expander in and slightly filled so there would be an opportunity later. Well, I just had it done last year when the expander HAD to come out when the mets appeared. I ended up with a B implant and a reduction on the good breast so at 56, I have two perky B cups! The one up side to the mets dx...LOL. I wouldn't suggest waiting the 10 years but you can surely wait until it is not so uncomfortable.
Hugs and yes...we are heading for snow this weekend - a slushy one since it has been so warm this week and the ground is still very warm - once it starts - it is usually April until the grass appears again...gotta love Minnesota!
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Hi All,
I did all the rounds of hormone treatments and did go on male hormones for almost a year - Androxy. Yes, I gained weight and had to deal with hair on my face and chest, it did give me an extra year and I was happy! I now know why man are easy going!! I was diagnosed in Oct 2004 and have been on naturapathic IV's for almost a year now. Markers going up so chemo in my future but I've had a great year without anything except naturapathic IV's and Avastin.
Annie
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Annie - so sorry you are having to face chemo. Know that we will be here to offer any help, encouragement, and support for your journey.
LWD - I have a Fentanyl patch that I replace every 3 days and I also take 1 or 2 Aleve depending on the day of the patch. The 1st day the patch is usually enough, the 2nd day I usually need 1 Aleve and the 3rd day I usually need 2 Aleve to keep the pain under control. I also have arthritis in my left knee, both hips, lower back, and both hands. I worry sometimes that the pain meds may be masking other problems, but it is good not to hurt everywhere all the time. I think they may increase the dose of the patch so that I don't have to take the Aleve.
Lowrider - Wish I was where the snow was. I love the cold weather, we were going to retire to Maine, but that changed with the economy so now we are hoping this is the year for some big snows in NC.
I decided to continue with the reconstruction and not do another surgery to try and get clear margins since the BS does not think that additional surgery would be of any benefit and I think she is right. (Just one of those feelings that I cannot really explain, but I just know she is right.) I would be happy with perky B cups as I was alway "well endowed" and had to buy top 2 sizes bigger than skirts and pants and forget about finding a dress that looked nice. Hopefully I will get the TEx removed and the permanent implants done sometime in Jan. 2011.
I am seriously considering changing to a different RO. I tend to be in a confrontational mode when I go to see the current one since he seems to be trying to convince me to do something I don't want to do or feel comfortable with. I don't need or want anything to fight about or get upset about. My DH says this RO has not learned that with me I tend to want things my way or it is hit the highway for them. He says I should just get through the 10 treatments for my spine then make a change if that is still what I want to do. We'll see what happens in the next couple of weeks.
Hope everyone has a restful evening.
Amy Jo
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Hope everyone is doing okay. It is kind of quiet on here. I just got back from the onco and my 3rd Aredia treatment. I had some good news. No blood transfusion needed at this time. My score went up from 7 to 9. Anything 8 or below they want you to get a transfusion. He recommended that I also take some Folic Acid with the iron to bring it up even more. My CTMC went down from 1554 5o 1152 and there was another marker test count that went from 640 to 215. All of this means the Femera and Areda are working. He also upped the does for the Fentanyl from 12 mgc/h to 37 mgc/h so we will see how that does. He also gave me the name of a new RO and said that I could change anytime, even tomorrow any it would not change anything as far as my treatment. I love my onco.
I will be calling my family doctor again tomorrow to see if there is some of the meds I am currently taking that I can stop taking. Hopefully I will be able to stop some of them. I called his this morning and told him the problem with the RO and he said he would get with the onco and see what they could do and that he would do his best to get the rads started on Wed so that I would be finished by Dec 2nd.
I an feeling crummy and almost sick, but I am feeling better about the situation with the RO.
Hoep everyone has a restful evening.
Amy Jo
Amyji.......................................................................................................................................................................................................................................................
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Amy Jo...that is excellent! Thanks for keeping us up to date. Remember water with the Aredia - it does amazing things - I am not a water drinker but 2 days before treatment, I start guzzling it - I bring 2-3 bottles to treatment (and have lots before) and then for a day or two after and you don't feel as bad.
So glad you are happy with your onc...that means a lot with this crap!
Hugs...LowRider
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Lowrider - Thanks for the advise. I know how importance of staying well hydrated. I always drink tons of water every day my normal minimum is 64 oz. per day.
Today was good for a day the sucks.
Good part -- Went to the RO and for the run through to check the alignment for my treatments and thought that would be all they would do, but they actually started the radiation treatments today! Yeah I will be done by December 1st. Evidently my call to my Family Physician and the talks with the onco did some good. I saw a new RO today and I really like her. She asked questions about how I was feeling and then listened to what I was saying. She is in the same treatment center so I don't have to go to a different place and she had access to all my records right then.
Bad part -- Started the day feeling okay, but that did not last long. Made the mistake of eating breakfast the day after my Aredia IV, BIG BIG mistake. Been vomiting all day even water won't stay down and anything I try to eat or drink taste awful. The SEs from this get worse after every treatment. Called the onco's PA and she had the onco send in an Rx that my DH has gone to get and she told me that if nausea does not get better by in the morning to call and come in to the office or if I do not stop vomiting within an hour after taking the med with a little food then go to the ER tonight. She said next time they will give me something to manage the SEs when the give me the Aredia so that i will not have to go through this again. Will try to post again later.
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Hi AmyJo,
Have been out of town for a few days. Thanks for letting us know what has been going on, and for your PM. So glad they have started the rad treatments. That's great. The Aredia part, not so good. Hope you don't have to experience such SE's again! Glad you are speaking up. Sounds like it has done some good. Who will do it if we don't???
Let us know how it goes. Hope you are feeling better by now and no ER visits on the agenda!
Thinking of you,
Lane
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Just a quick update -- I am feeling better this morning and did not go to the ER last night. The meds stopped the vomiting and eased the nausea within about 20 minutes. Still feel a little shaky, but I get that way when I have not eaten. I did eat 1/2 piece of toast this morning and managed to ride my bike for about 10 minutes. I usually ride for 20 but thought I better not push things too much or I would be back in the same place as yesterday. I am still on the flat ginger ale with green tea and will try plain water when I am done with this bottle. Even my water tastes funny and normally it does not have any taste to it.
Lane - Thank all of you for your thoughts and prayers. I have another rad treatment at 9:30 and my DH is taking me so that I won't be alone or have to drive by myself. I honestly do not know how I would make it through this without him. He takes such good care of me both physically and emotionally.
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off for "shot-in-the-butt' no 8. feeling a little grumpy about it this morning.
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I'm with you, Susan. I had Faslodex #3 on Monday and I'm starting to hate them. It's hard to even get up in the morning. Top it off, the nurse could still see where the other shots were and said if they don't heal by December she may have to stick the needles into the tops of my thighs, which would mean watching it go in. (!!!) Maybe that's what made me queasy. That or the side of Zometa I had with it.
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By the way, has anyone else had a lot of nausea from the Faslodex? I thought it might have been the Zometa infusion, even though I hydrated all day before I had it. It's going on day 3 and I'm still really woozy and my back is killing me.
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I began receiving faslodex injections 4 weeks ago.When I was first diagnosed I took tamoxifen and lupron injections. Tamoxifen didn't work well, had an oophrectomy and was started on femara and zometa. Did really well on these two meds for 15 months and then my numbers started to creep back up and my tumor started growing again. I had a bilateral masectomy in September. My tissue expanders are almost completely filled. I was switched to the faslodex and continue with the zometa. My numbers are going down already after only 3 double injections of the faslodex. Has anyone been on the faslodex long term? The side effects from the drug are very minimal but the soreness from the injections is bothersome. Not complaining much because the drug is working and I feel pretty good.
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Small update.... another month and almost no marker movement. 27.29 moved from 85 to 86 which is statistically irrelevant while the CEA went from 4.0 to 4.1.
I had small hopes that the numbers would drop dramatically once again, but I am delighted to see no upward jumps.
*susan*
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I'm new on this site. First diagnosed in 2003 and had mastectomy and put on Tamoxifen, Stage II. Didn't have chemo or radiation due to inability to get to treatment center. By 2007, learned it had metastasized to my bones, and am now at Stage IV. Was placed on Femara on 6/15/07 and my remission lasted until 11/1/09. By 12/15/09, was put on Aromasin, and had radiation on right side in Jan. & Feb. of 2010. Cancer markers have been gradually increasing, so on 11/17/10 was started on Faslodex injections (didn't hurt a bit, and injection site is fine). So far I have been lucky about not having any serious side effects and hope my luck holds. I did think I had a few hot flashes when on Femara, but that was all. I have not suffered from bone aching--yet. I'm 71, and hoping to make it for another year or two. My onc. says that he has some patients that have had very good results from the Faslodex, so am keeping my fingers crossed that I will have good results too.
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Amy Jo: Guess I may be lucky that I live in a rural area of southwest Montana. Last year, I developed severe pain all along my right side and it was determined that I needed radiation. I was referred the same day I saw my oncologist, and had my initial visit with the radiologist. I was immediately sent to the radiation dept. and the form was made and the markers were tatooed. As I recall, this occured on a Friday, and the following Monday I began the rad. treatments. I received a total of 15 treatments, noticed improvement by the 4th treatment, and I have been pain free there for nearly a year now. I hope you have as much success as I had
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Hi Lorene, a big welcome to you. I too was diagnosed in 2003 so we are year sisters. My mets to the bone came in May 2009. I had rads and as you say, by the third round for me there was a marked difference in pain level. I was NED on Arimidex for 15 months but was changed to Femara a couple of weeks ago after another very small spot was found on my ribs and the A side effects were beginning to give me no QOL. The change from A to F, even though only a couple of weeks, is quite remarkable and I am beginning to feel like I am rejoining life. Yahooooo! Once again, welcome to a great big family known as BCO.
Peace, strength, Love n hugs. chrissyb
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ChrissyB: Chrissy, I hope you have as much good luck as I did with Femara--I was in remission for 2 1/2 years! I occasionally noticed some mild hot flashes, but nothing to get excited about. Yes, it's good to find another "year-mate." After my success with Femara, I only lasted about 11 months on Aromasin, but it was a good 11 months, so can't complain. I really hope that this Faslodex (fulvestrant) keeps me going for at least another year or so. I am hopeful anyway.
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Lorene - welcome to the site, sorry you have to be here, but this is the best place for support and encouragement.
I had my 3rd radiation treatment today and is went well. My 4th treatment will be Sunday morning and everyone seems to think that will be the one that will start to make the difference in my pain. I hope that turns out to be the case.
I have discovered that the Aredia was not the cause of me being so sick it was the Fentanyl. My system could not handle the dramatic increase in the dosage. All is better now that I have gotten used to the dosage and have some medication for the nausea.
I am tired tonight so I think I will head to bed. Hope everyone has a restful night.
Amy Jo
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Hi, This is my first time I have ever joined a discussion board. I am 39 years of age and have just been diagnosed 10 weeks ago with Stage 4 ductal breast cancer, with widespread skeletal metastasis (most bones in my body have cancer), and liver mets. I have 5 beautiful children, and it is inspiring to read all your stories...I've just had XRT to my back for pain, and now am on Femara & Zomeda only. Does anyone use Faslodex in association with Femara? Does anyone follow special diets?
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Hi Kouragio, welcome to the family of BCO. Sorry you need to be here but really glad you are. I have mets to bone also but I am only on Femara at present. I am sure there will be others here very soon as it's still early and they can give you more information on the Faslodex.
Peace, strength, love n hugs. chrissyb
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Kouragio, I no longer do the hormonal treatments, wish I did, but I check in here every so often. I have the same mets as you do, bones and liver and just wanted to encourage you to keep on fighting and not give up hope.....I have been doing this a long time. I used to get a faslodex injection every month and think we did this for several years. A lot of women complain about how painful it is, but I must have lots of padding because I did not find it that bad and when you stop to think a simple injection once a month....it's not that bad. Plus it worked. And zometa, I get that also and have been doing it for a long long time. Hope the rads got rid of your pain and hope you have success with your treatments. Marybe
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Kouragio: Welcome to this board! I just started in earnest on this board yesterday, and have felt very welcomed by everyone. I am 71-years old and was first diagnosed with ductal carcinoma in Feb, 2003. In April 2007, I accidentally learned that I had bone mets. Had been on Tamoxifen up to this point, and then in June 2007, started on Femara, and it was great until Nov-Dec of 2009, when it obviously wasn't working anymore. I was then started on Aromasin, and it was doing okay until this past week, when it appeared that my markers are gradually increasing, so was started on the Faslodex injections. This medication was first warmed, and each injection took a minute or two, and the injection was then massaged by the nurse. I had absolutely no discomfort so am hoping that it stays this way. I have also been on Zometa since June 2007, and I have no trouble with that either. I have been extremely lucky (so far) that I have experienced no serious side effects from these medications.
However, I had been on Fosamax and Actonel since 2000 for osteoarthritis (low bone density), and when I learned that I needed to be started on Zometa in 2007, I was advised to see my dentist. I knew that I needed dental work, so got a quick appointment and had two extractions: one on my lower jaw and one on my upper jaw. Within days it became apparent that there was a serious problem with my lower jaw, and I was subsequently diagnosed with osteonecrosis of the my lower jaw which was caused by the seven years of taking Fosamax and Actonel.
With ONJ, the jawbone actually dies as there is no longer any blood supply to the bone. The bone then begins to disintegrate and pieces and shards of bone to appear from time to time. I have had oral surgery to correct some of the problems associated with ONJ when they appear and I am prone to frequent infections of my jaw. Because Fosamax, Actonel, Boniva and Zometa are all in the bisphosphonate family, it was felt I needed to be careful with the Zometa infections. Later it was learned that once you have ONJ the Zometa does not make the condition worse. So, I am back on monthly infusions of the Zometa.
I sure would warn women diagnosed with osteoarthritis not to stay on the Fosamax, Actonel, Boniva-type medications for this condition for any longer than 5 years. You should then go off of these meds for a 5-year period (there is only very little loss of bone density during this off-phase according to an article in my oral surgeon's medical journal in May, 2009), and then resume these medications if it is felt necessary. I would advise all osteoporsis women to use caution with those drugs, because if you develop hormone fed breast cancer, you will have problems with the Zometa that is prescribed for your bone mets.
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Kouragio,
Welcome, and like the others, I wish you hadn't needed to find us. At this point, I believe that I am the only member of the AI group that is doing both an AI and Faslodex in combination. I am on aromasin [and have been since ending active treatment for stage 2b in 2005] along with a single dose of Faslodex.
My blood markers indicate that I am least regressing but might be NED. Onc is not doing scans since he is seeing such a positive response through the markers.
*susan*
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I think you are too Susan...I had my scans today...results on Wednesday. One of the options if things are progressing is adding back the Arimidex so it seems the thinking is swinging with stopping of both types of estrogen expression. I only had one lesion grow on the Arimidex and will soon know if the Faslodex is doing its thing - 4 singles shots and 2 double shots and likely another double shot on Wednesday, I feel confident about the scans, I think.
khartoregon - I have had no upset tummy at all. If it continues, the Ativan should calm that down.
Lorene - welcome to the SS Mets Cruise Line - sorry you have to be here but it is a great place!
AmyJo - thanks for the update - sounds like you are getting into a groove! It makes things go easier.
Kouragio - I saw you post on the supplements...the calcium, magnesium and zinc are good but be sure to get it with vitamin D3. If you are concerned, have them check your D levels - fatigue could indicate you may need more - there is usually 200 - 500 with the calcium mix but I am taking another 2000 on top of that. I try to reduce gluten - it helps minimize the joint pain that is associated with the anti-hormonals.
Hugs All
Low
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Thanks Lowrider! Actually the few times I've taken ativan to calm nausea I've thrown it up a few minutes later hahahahahahahaha. It's kind of like a hangover without the fun, but I'd never had it carry over more than a day before. Crazy. All better now tho'.
Man, I hope this stuff is working. I can't wait to hear about your scans. I meant to congratulate you before on bending (how silly that we congratulate each other on bending). I look forward to the day when I won't have to sit down to put on socks.
Karen
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Low,
Hoping the best possible news from your scans. Let us know. Sending positive energy your way!
Lane
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Low.
Oh I am going to be paying close attention to the results from these scans. Aren't we on just about the same schedule? Interesting that you might be adding an AI. That would match my protocol. Keep us posted, please.
*susan*
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Lorene and Kouragio,
Welcome to our group. You will find you are supported, comforted, and loved by your fellow members. I wish all the best to you and your families during this holiday season. We are here for you!
Lane
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