Faslodex Girls

Redrawn, I agree with the others in saying it is too early to say if faslodex is working.

Oh and yes he is doing ct scan every 3 months or so and I had increase in size of liver tumor that had been shrinking . sorry I forgot that part. 

Redroan

Tina2,

I'm still having pain with my injections the hip pain after shots is relieved for me with Lyrica, Volteran Cream and LMX cream rubbed all over right after they give the injections.  I actually do the LMX cream fifteen minutes before while I'm doind chemo.  

Tomorrows discussion after PET Scan will be are these working because I believe my bone mets have moved into my right arm and shoulder.  I can't imagine having the Faslodex shots in my right hip after the bone marrow surgery!  I have a painful lower back with everything I do since I started these shots.  I use to be able to walk five miles a day, now I walk half a block and the lower back pain sets in big time that it stops me in my steps.

If you have arthritis and are Stage IV, I would discuss with your Rheumatologist to talk with Oncologist about  adding Cytoxan.  I would not be able to do the Faslodex shots without Cytoxan.  I only have lower back pain and pain where there is cancer in the bone.  But the swelling and joint pain, feet swelling pain also gone since doctors put me on Cytoxan.  If my blood levels are down and they can't give Cytoxan they also wait to give me my Faslodex, knowing what happens to me from them.

I have found that women who have arthritis or other soft tissue and bone diseases seem to have much more pain than those who don't, my doctors say that it causes flairs with arthritis and it's important to find a way to ease the situation.  Like I said before all the meds before have helped me to be able to stay on Faslodex.

Now if the Scans tomorrow show even more cancer and tumor growth, they are thinking of changing me out to something else.  I've seen how many women have done so well with Faslodex and I really want to keep on it. 

My metastases are to the right hip (which had to be replaced because it was about to fracture) and the right ilium near the SI joint. I've also had radiation to both areas. I find that the Faslodex injection on the left (unaffected) side doesn't hurt much, at least so far, but I have a lot of pain on the right side. In fact, I have more pain with walking now than I did a couple of weeks after the hip replacement! I can hardly walk for about 10 days after the injections. I'm going to try all your suggestions--alternating heat and cold and rubbing the lump. Do I need a prescription for the Volteran or LMX cream?

Is anyone taking Tamoxifen along with Faslodex? My MO wants me to take a bisphosphonate or similar drug, but I just really, really can't. I'm terrified of ONJ. I'm wondering if the Tamoxifen would help my bones, at least a little, and satisfy the doctor!

Sandilee, I hadn't thought about taking Xgeva for just a short time. Actually, I don't know much about which people are more likely to get ONJ. I had to have a tooth extracted after being on oral bisphosphonates, and had to stop the drug and wait for 8 months to have the tooth out. My oral surgeon told me about ONJ and described it as "horrendous". When I looked it up, it really was horrendous. I planned never to take those drugs again, and then i was diagnosed with bone mets and was so upset when i found out that bisphosphonates are used to treat bone mets. Do you know what percentage of women taking Xgeva get ONJ?

Tina2, I'm having quite a bit of pain from the injections. My mets are to the right hip and right ilium near the SI joint. I had a hip replacement and radiation to both areas. The injection on the right side is painful when I get it, and then gets a lot more painful. My last one was 2 1/2 weeks ago, and I'm just now walking with less pain. Walking is harder now than it was a couple of weeks after my surgery. The injection on the left side is ok so far. I think the pain on the right side is probably from continuing trauma to an already traumatized area.

Hi MaryLW,

I already posted to you the Abbreviations from BCO (Breastcancerorganisation)

Best

Usha

Hi MaryLW,

I already posted to you the Abbreviations from BCO (Breastcancerorganisation)

Best

Usha

M360 reading your post made my hair stand on edge. I was so sorry to read it. I do hope something is found that will work for you and won't have any side effects. Sending you light and love and good vibes.

Teresa

It's not me, Tina, its m360. But I agree with Tina. Holy s---t and let us know where you will continue to post so that we can stay together.

M360,

My heart goes out to you. I hope you have good care and this mess is getting cleaned up. Sending you hugs, healing light and a big dose of fight it off attidude your way.

Tish

Hi everyone.  Today I am officially a Faslodex girl.  Got my first shots today.  I have read with great interest many of the posts.  If I were to experience any side effects, how soon after the shot should I expect them?  I'm hoping I have few but reading here I'm a little concerned that I may blossom out with something in the middle of the night.

I also got a xgeva shot as I have some mets to the hip socket and some in lower spine.   Nothing so far in terms of injection site swelling or soreness with either shots.

Looking forward to your replies.  Sue

Sue, welcome to the Fanny Pack! I've been on Faslodex for nearly two years. It has knocked my lung mets into mere shadows of their former selves and I am grateful. That said, here's my litany of my SEs:

I had a fair amount of strong hot flashes in the first months, but they've eased up--or I've just gotten accustomed to them. For the first year or so I had very itchy red welts at the injection site, then figured out that I was allergic to the adhesive in bandaids, so I began asking for paper tape and that was pretty much the end of the itching. Sometimes the injections really hurt as they're being given, sometimes not. My nurse now uses a numbing spray beforehand, which helps somewhat.

Sometimes I have nausea. I often have bruising around the site , some months worse than others. Lumpiness under the skin continues. The skin on my upper buttocks and hips is sore in some places, numb in others. Deep and abiding pain in my lower back that I attribute to the injections is a sorry fact of my life now, but I'm learning how to deal with it with NSAIDs and muscle relaxants.

The important thing I keep firmly in mind is that the stuff is working. This thought makes the SEs bearable, although what just happened to M360 is really frightening and a reminder to us all that being on this stuff is serious business, no matter how "mild" our SEs may appear compared to those of "harsher" chemos.

Tina

Hi Sue, I go for my fourth set of shots on Monday.  The first set was a breeze.  Second/third I had a stinging rear from the evening of the shots to the next morning.  After that sore for a couple of days. 

I am allergic to the shots somehow.  Get rashes at the injection site.  On advice here I'm going to take benadryl this time. 

As for systemic side effects, I've been taking Lupron and tamoxifen for years now.  I don't notice anything different in the realm of menopausal symptoms.  Although I do notice more hair on my comb.  Sigh.