Faslodex Girls

ming · July 2007

I have started faslodex after progression while taking femara. A good thread was going under hormonal, but I think only advanced breas cancer patients take this drug.

The other thread gave advice about how to best take the shots - standing with weight on opposite hip and pressing weight toward big toe! It works!

They tell you the shot hurts, but it doesn't hurt to get the stick of the needle. It just takes a little while to empty the syringe. My nurse said to take a deep breath right before the insertion of the needle (ask the nurse to tell you just before) and then breathe out real slowly while they unload the medicine. SHe also said rub the site often so it won't develop a hard lump there.

I got two shots the first time. I go back two weeks from the first time to get another shot. The two weeks later - then montly. It's a load dose that way.

My new onc says she is seeing long term working of this drug - even longer than femara. She said it doesn't work real fast but you find out within a few months if it is going to work for you.

I am wondering if anyone else has had a sort of wierd side effect - couging, post-nasal drip. We've checked it out to be sure it's not anything else. I don't know if it is just an emotional reaction to finding out I had progression on femara, completely unrelated, or a faslodex SE.

Please anyone with experience about faslodex post and let's help each other.

kansas · July 2007

Ming:

I've had the Faslodex shot four times. Ready for my fifth next week.

The only side effects I've had were/are horrendous. The muscle at the top of my leg hurt so badly, I was taking 8 Vicodin a day. I called AstraZeneca, and they showed that this was not a side effect.

I've been off Vicodin for a couple of days, and my leg is better, after three painful months.

Kansas

LuAnnH · July 2007

I have no problems with my faslodex shot. Next month will be 3 months. I think it is working as the lesion on my sternum has gotten smaller. We also added herceptin with the faslodex. I do have a drippy nose but I think that is from the herceptin.

LuAnn

RobinWendy · July 2007

I have been on Faslodex for almost 8 weeks now after coming off Femara. I don't really find the shots painful but it may be all relative. I currently also get Zolodex shots in the stomach (for the past 3 1/2 years)... now THAT is painful. I haven't had any side effects from the shots and I have not noticed any nasal drippiness. I am happy to hear that your doctor expects even better results from Faslodex than Femara... I was on Femara for three years before it stopped working. I would certainly love even more years NED with the Faslodex.

Good luck with your treatement!

mom2acat · July 2007

I just had my 3rd Faslodex injection last month; I also get my Zometa on the same day, so any side effects I can't really tell which is from what drug.

JeanOneal · July 2007

I had my 5th Faslodex injection Friday along with Zometa I.V. No side effects as I can tell. My tumor markers have gone down for the 3rd mo. (1st time in 3 yrs.). Am also on Xeloda by mouth (chemo) so will keep everything going.

Anonymous · July 2007

Hi Ming,

I have been on Faslodex for 13 months. I can concur with everyone else, no side effects (except for sore hip for few days). I just wanted to post since I've been on Faslodex for over a year. Anyone else been on Faslodex longer?
Take care,
Bethie

Boop · July 2007

Hi Ming,

I just started faslodex myself, I had my loading dose the first of June..I had some really bad bone pain for about 3 or 4 days..The second day was the worst..I have had two shots since then and I have had no side effects from them..Maybe a little achy and a sore hip..

I was diagnosed with multiple bone mets in Jan. 2003..I have been on chemo twice and I hope this faslodex will work for a while..So far it has pretty easy other than the loading dose..My tumor markers went up a little this last time, so I am praying that they will start going down...

Hugs and God Bless,
Cherie

ming · July 2007

Thanks to everyone for weighing in. Let's keep each other posted on how our tumor markers and scans go. I'm not sure what has been going on with the postnasal drip and couph but ears started hurting and eyes sticky when I woke up = called regular dr and got prescripton for antibiotic. So maybe it was just not related.

Glad Kansas' muscle pain better and LuAnn's sternum mets smaller. Glad this drug is working so well for us. Hope more folks will join in if they've had faslodex or are taking it.

JeanOneal · July 2007

This was my 3rd mo. with my tumor markers going down-for the 1st time in 3 years. Have been on Faslodex about 5 mos. now and also on Xeloda. Whether it is the Faslodex, Xeloda or combination, I am grateful and will keep it up as long as it works.

ming · July 2007

Just an update - second time at onc for shots - at two weeks after first shots (2 for load dose). Different nurse and she added a new wrinkle to shot tips. She warmed up the shot - said it comes in prefilled syringe and is stored in refrig. She says warming helps discomfort while shot empties. We did the standing, weight on leg opposite hip for shot thing. Take deep breath right before she says shot to start. Let air out slowly as syringe empties.

Tumor markers down a little and liver tests good too. Here's hoping faslodex is working to stop progression and shrink what's there! I go bak for another shot in 2 weeks and see onc. Praying for all the faslodex girls!!

carole2 · July 2007

I'm interested in hearing more about experiences with Faslodex. I finished Abraxane/Avastin/Zometa treatments for bone mets on May 11th. PET/CT scan was negative (complete response to therapy, praise the Lord!) on June 1, so I have started maintenance treatments every 4 weeks of Faslodex and Zometa.

I am having increasingly painful joints @ 2 1/2 weeks from initial treatment. Have any of you experienced joint pain or increase in arithritis pain with this drug? If so, does it ever improve or just get worse?

RobinWendy · July 2007

As I posted separately, after 8 weeks on Faslodex, one nodule in my liver grew although all other nodules were stable. Has anyone on Faslodex had a rough start where it was not initially working only to find that the next scan showed improvement? I will be speaking with my onc tomorrow morning and would really like to know if there would be any reason to ask him if i should stay on it to see if things turn around.

Thanks..

Robin

LuAnnH · July 2007

You shouldn't have increased joint pain with faslodex. This drug does not stop your estrogen production. It clogs the receptor cells that the cancer needs to live. You might want to have your Rheumatoid factor checked and/or an ANA panel. My onc ran mine and found out I had rheumotoid arthritis & Lupus. These diseases were brought on by the Arimidex (which stops your estrogen). I have been being treated by a rheumotologist since we determined that was what caused my pain. That is now pretty much under control with meds. I am on a med, the generic name is combogen, it is a vitamin with lots of B6 & folic acid. This is supposed to help joint pains associated with the RA. I have only had 3 faslodex injections so far and it has been such an easy drug to take that I hope it works for years for me.

LuAnn

joanalice · July 2007

I just had my 2nd Faslodex shot a week ago. I don't find it too painful, but I have terrible fatigue that my onc can't explain. My scans all show no evidence of cancer activity but my tumor markers still are going up. My onc says it may take 6 month for any response. Muscle, joint and bone pain are much better with this drug that with other estrogen inhibitors.

Zippychick · July 2007

I had my 5th Faslodex injection July 13, 2007. The only side effects that I have found is a swollen/dry feeling throat that I constantly have to clear, but no cough. I have become slightly anemic on this drug including a lowered platelet count. My Hemiglobin, RBC and Hemocrit has finally gone up (Yahoo) the first time since April. My Onc. has said that the iron studies indicated my iron levels were fine and that either the Faslodex or the disease itself is causing the low blood counts. White Blood Count and Bilirubin, by the way is fine. My tumor markers CA 27-29 have continued to rise 7-10 points per month while on Faslodex and I had a PET/CT just yesterday. Keep me in your thoughts.

mom2acat · July 2007

I have had 4 Faslodex injections so far, but because I get my Zometa the same day, I'm not sure what causes my side effects. I am also on Lupron.

I get a bad headache the day I get my Faslodex and Zometa; the first time it happened, I went to the ER with a severe migraine, but since then, I have gotten some prescription headache meds from my doctor. I take them as soon as I feel a headache coming on, usually it's a few hours after my Zometa infusion is done. It makes me feel kind of dopey the rest of the day and into part of the next, but it does stop the headache from turning into a migraine. And having it happen just once per month, I can put up with it. My days off of work are always Tuesdays and Wednesdays, and my treatments are always on Tuesdays, so that helps a lot.

JanMelby · August 2007

I have been on Faslodex since January and Zometa since February. I've been having pain in my hips and upper thighs and I'm not really sure which drug is causing the problem. It didn't start after the first few treatments. I also started having a shoulder pain which is also something new to me. I had a bone scan after these treatments but the onc said it's hard to tell at this point and to have another bone scan in 3 months. I haven't had any other tests. My onc never talks about tumor markers etc either. I'm really nervous about it. My cancer came back after 13 yrs to the bone. I was on femara for 3 yrs and then the scan in Dec showed the femara stopped working but he said it wasn't as bad as when I started on the Femara. I also learned that the femara made my osteoporosis worse. Any comments would be appreciated

joanalice · August 2007

It sounds like you onc is not very communicative. My cancer came back after 8 years and it landed in my spine. I had radiation and was on Arimidex and Aromasin. I guess my onc felt they were'nt working, because my tumor markers kept going up. My scans were all negative. I also have pain to my upper thigh, which I hope is bursitis but who knows? Every little pain makes me think of cancer, which causes a lot of worry. Try to get your onc to give you more information, such as what your tumor markers are doing and possibly have a Pet scan which is supposed to be the most reliable diagnostic tool. Let me know how you are doing?
Joni

JanMelby · August 2007

My doctor never even suggested a Pet scan. How many people have gotten pet scans. When I see my onc next month I'm going to ask him about tumor markers. He never talks about that. I'm afraid to ask to many questions because I'm afraid of the answers. He keeps saying I'm tough and I don't feel like that sometimes. Every pain makes me worried and then I get depressed. I talked about an antidepressant and He said I really don't need one. I'm ok when I'm at work but when I come home that's when I start my negative thinking. I'm just scared.

ming · August 2007

JanMelby see if you if can improve communication with your onc. I recently changed oncs and am so glad because you have to be able to talk and ask questions. Tumor markers and scans are how we can keep on top of things. Would a second opinion/consultation at a major cancer center be a possibility? You had a great response to femara and my onc says that bodes well for a long run on faslodex. 3 years wow.

Also Zippy - praying for your scan results - keep us posted

JanMelby · August 2007

Ming, Did you have side effects from faslodex? I'm not sure which is causing me the problem. The nurse feels it's the zometa. I could get a second opinion but I feel odd doing that because I've been seeing this onc since 1991 and I really like him.

LuAnnH · August 2007

Jan,

Zometa can cause bone pain. I have that problem and have had them slow down my infusion, it takes 30 minutes instead of 15. It makes a huge difference as far as bone pain. I am on faslodex and seem to have no side effects from it.

As far as your onc is concerned, you need to open your communication up. If you want more answers you shouldn't be afraid to ask. I have never had a PET scan, we have just done CT & bone scans to date. Due to costs of the PET my onc usually orders bone & CT scans. He did tell me he would order a PET if he felt something needed further investigation. We run tumor markers every about every 3 months. Not all doctors check tumor markers. In some people they are an accurate picture of what is going on, in others they are meaningless. I would suggest meeting with another onc for a 2nd opinion. I feel it is very important to have a good repore with your onc. You never know you may find an onc that is more responsive to your needs.

LuAnn

JanMelby · August 2007

LuAnn, What is a CT scan. All I've had since bone mets have been bone scans. As far as the zometa goes, I have asked them to take 30 minutes. The last nurse was especially nice, in fact she let the bag of fluids drain out too because I told her about my bone pain. She said to drink a lot of fluids the day of the infusion. My onc said that they are looking at using zometa every 3 months instead of every 4 weeks. When I see him next month Im going to ask him about it. Also, how often do you have your scans? Also, how long have you been on zometa and faslodex? I sure am glad I found this site because it really helps to know you're not alone.
Jan

LuAnnH · August 2007

The CT scan is sometimes referred to as a cat scan. You are scan through a round machine. You have to drink the nasty white cocktail before your scan. It is fairly accurate. They are usually 1/4 of the price of a PET scan.

So far I have been having scans every three months so far. I would be due for scans this month but probably will wait a few more months since I know my tx is working. I have been on faslodex since May, we changed from aromasin to faslodex and added herceptin. I hope to get a good long run from this combo. We are looking at backing off my zometa to every 6 weeks because my kidney function tests are becoming abnormal. I have rheumotiod arthritis also and the meds for that as well as the zometa affect my kidneys badly.

LuAnn

JanMelby · August 2007

Does the cat scan check other parts of the body other than the bones? Just curious. I will probably go for another bone scan in Oct. The onc said that it takes time for a good result to show up on the bone scan because the bone goes through different stages. It's hard to understand all this. He said when I was on the femara I did real good for 3 years and then it stopped working. The reason for zometa was because my bone density test was worse from the femara. It sucks, you take one drug to help one thing and it destroys another. It really sucks but I'm trying to keep a positvie attitude. I just wonder about these different aches. Thanks for responding to my questions.

LuAnnH · August 2007

my cat scans scan my chest, abdomen & pelvis. This will detect mets in soft tissues. The CT scan also confirmed my mets to the sternum, so I assume it can pick up bone mets also. You should have been on zometa from the start. It helps stregthen your bones. It coats your bones and makes it harder for the cancer to set up house. It also does something with controlling the calcium in your system.

LuAnn

JanMelby · August 2007

Luann, How long have you had bone mets? Also when were you first diagnosed with bc? I'm going to ask my onc about a cat scan when I see him next because I've been having trouble with shoulder pain which he knows about. A spot showed up on my clavicle and he then sent me for an xray and he said it was ok and I didn't have to have more radiation. I just keep hoping that one of these days I'll start feeling better. My onc says you look good and I'm still working so he wants to keep on this course of treatment. When you found out about the mets to your sternum did you have pain? Everytime I tell him about a pain and then it goes away, he tells me that cancer pain doesn't go away and it's probably muscle pain.
Jan

LuAnnH · August 2007

I was dx with cancer in 1998, I was stage II, IDC, ER/PR+, HER2+++. I did not have any nodes postive for cancer. I did chemo and rads and figured I was good to go. I was dx with mets in July 2006. I have had my mets now a little over a year. I was working fulltime until a few weeks ago. I just left work on disability. I was very scared to make the jump but now I'm glad I did it. My sternum was very painful at first, you could literally see the tumor on my sternum it stuck out so far. It is much better right now, the herceptin has shrunk my cancer. Arimidex really took a toll on me, I developed Lupus & RA while on it. I have had my spine, knees and shoulders MRIed due to pains. They all turned out to be arthritis. I think the MRI will give you one of the best shots, they are just time consuming. The AI's can cause alot of joint issues but it doesn't hurt to check them out. I would ask for an MRI of the shoulder just to be sure it is not mets. It will ease your mind a whole lot. If you want to chat on the phone just send me a PM with your phone number and we can talk in more detail on the phone. If you want, I will send you my number.

LuAnn

ming · August 2007

Jan I just reread your question about hip and thigh pain - could it be related to the faslodex shot itself? I have had a similar pain and I think it was related to where the shot was that month. They have told me to rub the site of the shot to keep from having pain. One time I didn't and I had pain in my hip/butt and my thigh when I lifted my knee. Is this similar to your pain?

Also - you were asking us about our histories - I was dx Oct 2005 with stage iv with mets to sternum. No pain at that time in sternum. Was on femara until June when progression in primary tumor(no surgery cause found mets at same time) sternum and new area in hip. I feel little pains for a few days in areas like shin or chest - stay a few days and then go away. I/m learning to not worry about this. The tests every few months will show if my medicine has stopped working and a new med is in order. Like you said we worry about everything - and this worry can come when we are trying to SLEEP!!

Just know we are all in this together and this is a war and we have great weapons with more on the drawing board. We can regain territory that the enemy has moved into with our next weapon.

JanMelby · August 2007

Thanks for your answers to my questions. I'm learning to live with the aches and pains. I have a pain and then if I rest a few days it does go away. The hip and thigh pain comes and goes depending on my activity. I don't feel as if I could go for a long walk anymore without pain. Good thing I sit at my desk at work all day. I'm trying so hard to think positive and keep upbeat but it really gets hard some days. LuAnn, if you would like to call me my # is 630-293-5363 and I live in Illinois. If you'd like to give me your # I could call you too as I have lots of minutes on my cell phone. It's great to know we're not alone.

Faslodex Girls

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