stage 4 zoladex users

AnnE16

Hi,

I have been on Zoladex for 5 1/2 years.  I am trying to figure out where this lower leg edema is coming from.  Both Zoladex and Femara list lower leg edema but my oncologist last week said no way is it coming from the drugs!?  I was reading Zoladex PI this morning and it said to inject below the naval line (which my nurses always go to the side of my belly button) and then it said make sure not to inject into muscle or peritoneum.  After all these years, I have noticed that my stomach feels hard on both sides and I was thinking it was scar tissue from the shot.  Technically don't they inject the shot into our muscle and peritoneum each time they give us the shot?  You would think muscle for sure!  Would be curious to hear thoughts if you are on this drug and any weird side effects you may have?

Anonymous

Sorry, I dont know this drug, however, if it is meant to be given just under the skin, then the nurses will use a small short needle and use a different injection technique to get it to the right place. If it was given into muscle, it would be given with a long needle (at least 1.5 inches) and you would feel it more.Injections meant to be given into muscles are usually given in the arm or butt or thigh. those into fat are given into stomach, back of arm, etc. with a small needle and at an angle. Even if you are thin, it will go into fat.

AnnE16

Thanks thisisme for your response!  Actually, the needle on this drug is HUGE.  I have the nurses give me lidacain (sp?) first and then the injection. If the nurse doesn't wait long enough for the area to get numb, it can actually be painful.  And I have a high tolerance for pain!  I was curious about your treatments in your signature...is Affinitor an oral agent or is that IV?  Is that what they are putting with Aromasin?  I think my doctor mentioned this drug to me recently.

tonihicks1

I get this every month and the needle is HUGE!  It is like a stapler injecting the end of a pencil lead into your belly.  I also get it just below and left of my belly button.  I always get it in a fatty section.  I do not get lidocaine, not because I am brave but because I was never offered anything but an ice pack.  So I just skipped it.  I do not get any lymphedema from it.  In fact, I have not noticed any se.  Hang in there.

AnnE16

Hi tonihicks1, I was doing it on one side for awhile and then I can't remember if I read it in PI or if the nurses told me but they said you are supposed to alternate shot every month.  Have you heard this before?  So for the past 3 years, I have been alternating sides.  I am usually left with a good size bruise and I am a bleeder!

tonihicks1

You know, now that you say it, I think I have alternated!  Gosh - shame on me for sharing incorrect information!  The woman who gives me the injection usually has me laughing so hard that its hard to remember.  She is hilarious!  I am also a bruiser and bleeder!

Anonymous

smiley,the aromasin/afintor combo is given to women who have failed some of the hormonals. It is in pill form. here is info from BCO:Afinitor

Afinitor (chemical name: everolimus) is an mTOR (mammalian target of rapamycin) inhibitor. Afinitor works against hormone-receptor-positive breast cancers that have stopped responding to Arimidex or Femara by stopping the cancer cells from getting the energy they need.
I also read on the sloan kettering site (I think) that Afinitor stops the cancer's ability to grow resistant to AIs. i dont think it would be given before other hormonals are tried.  I am not finding it too bad but others are really struggling with it.
Oh, and in regards to the size of needle, I do think that the needle for zoladex is bigger because it is depositing a depot of the drug, like a tiny grain of rice so the needle is thicker. you will also notice that the med comes with its own syringe for this as it would not work with regular syringes.

Anonymous

smiley,the aromasin/afintor combo is given to women who have failed some of the hormonals. It is in pill form. here is info from BCO:Afinitor

Afinitor (chemical name: everolimus) is an mTOR (mammalian target of rapamycin) inhibitor. Afinitor works against hormone-receptor-positive breast cancers that have stopped responding to Arimidex or Femara by stopping the cancer cells from getting the energy they need.
I also read on the sloan kettering site (I think) that Afinitor stops the cancer's ability to grow resistant to AIs. i dont think it would be given before other hormonals are tried.  I am not finding it too bad but others are really struggling with it.
Oh, and in regards to the size of needle, I do think that the needle for zoladex is bigger because it is depositing a depot of the drug, like a tiny grain of rice so the needle is thicker. you will also notice that the med comes with its own syringe for this as it would not work with regular syringes.

Anonymous

smiley, have you considered having your ovaries out so that you dont need to get these shots anymore and also, you would have the AIs as treatment options? i dont think that you can use AIs unless you are menopausal and I dont think that using zoladex counts, but not sure about this.

AnnE16

Hi thisisme, I have thought about taking the ovaries out but after my mastectomy that same year I had my belly button hernia taken care of.  So, if I take the ovaries out they can't go laparoscopic b/c of the mesh.  So they would have to go the old way which is essentially like the csection I had and longer recovery, etc.  The main reason though is my husband got a new job and our insurance SUCKS!!!  We have paid so much money out of pocket this year.  The time to have done it was when we had BCBS. 

I am also on Femara. They put me on that at initial stage 4 diagnosis.  I am certainly menopausal now! I haven't had a period for awhile now! That I do not miss!

CJRT

This is so weird! I stumbled on this after searching for Zoladex because I wanted to ask a question about scheduling a vacation while on Zoladex. (I will be getting infusion 10 days late and it makes me very uneasy!) But, I have the lower leg swelling thing!! I have had it intermittently for a very long time. Initially it was attributed to swelling draining down from my hip replacement, but it's been over a year since I had the hip replaced. I have no ankle or foot swelling. Just the outer part of my lower leg/side of calf area.  Two months ago they sent me for an ultrasound to make sure it wasn't a DVT. I have yet to get an answer other than it's not cancer and it shouldn't be related to the medication!

CJRT

Excuse me for hijacking your thread Smiley, but since you've been on it for this long, I was wondering if you have ever delayed your regular 28-day schedule. I don't know if I should drive myself crazy looking to get it somewhere on my trip or just get it 10 days late. I happen to know a doctor where I'll be traveling, but my MO said this was not the type of medication you can just pick up at a regular pharmacy.

AnnE16

Hi CJRT,

I have gone a few times with not getting it at exactly 28 days.  I have postponed it due to flu or not feeling well, snow, bad weather, etc.  I don't sweat it.  That shit is in our bodies and being on it for 5 1/2 years, I don't think my ovaries are going to immediately awaken if I miss a week or so!  Those things are probably in a coma by now!  I would go enjoy your vacation and just schedule your shot for when you get back! I think I saw on this site somewhere that there are some girls that are doing it every other month!? 

But I do think that is very interesting that you have the swollen lower leg too!  I went to see another doctor today to get an order for my lymphadema lady to start treating it.  She thinks I have "subclinical lymphedema".  It is very minor swelling and you wouldn't even notice a difference in my legs but I can FEEL the difference.  Do you have any feelings of fullness, tightness or fuzzy feeling sometimes?

I think it is ridiculous that these doctors say that it can't be the medication...it says in the package insert under side effects (I think "rare") that it causes "LOWER LEG EDEMA".  Zoladex and Femara BOTH say it in their PI's and I am on both drugs.  Someone has to be the 1-3% right?!  I swear these doctors don't even know what the hell is printed in these package inserts!

CJRT

Thanks so much for sharing your experience Smiley!  I get a weird sensation in the leg that is really hard to describe....feels like tightness or stretching.  The fullness you mention also seems to match how I feel.  Mine is slightly noticeable since I have become leaner and more muscular.  Random providers only notice it once I say something. Then they will respond, "Oh yes, right here" and then feel the area.  I pointed it out to my MO who just shrugged it off and said the ultrasound was fine.  Mine starts about 2 inches above the ankle and runs about 4-6 inches up the outside.  Honestly, it wasn't even mentioned to me that it could be a side effect.  I directly asked too!

Redheadfriendship

Hi!

I joined this forum because I have a friend that has stage 4. She really doesn't have much of a support system, and I want to be a really good friend to her.

My friend reached out to me because she was worried that zoladex might give her wrinkles. (When you are 42 and given 7 years to live...)

Is there any advice with this drug? Any advice how I be supportive? ( I adore her attitude! We both make each other laugh).

Any and all advice would be helpful.

Love!!!