Cytoxan and Taxotere ?

Harley44

shrink,

Well, until you have seen the "other side" of things, you don't know if what you've been told is REALLY correct, or if you are getting told a "cover story". I say get as much info. as you can, because you CAN NOT trust any other person, even the GOSH ALMIGHTY DOCTORS!, because they will not always do the thing that is best for you... Only you can know that.

I sure don't want to end up with an infection, just because my onc doesn't want to spend a couple of dollars for a shot that may save my life!

HARLEY

shrink

I go to Lankenau Hospital (part of Jeff). My BS was trained at Fox Chase though - Ned Carp. I do ask questions, ask for all of the reports, check I'm getting the right stuff, etc. The nurse asks my name and tells me what the results of my blood tests are and what she's putting in the IV. My treatments are every 3 weeks, so meds are probably different for those having infusions at shorter intervals. I don't really know.

I agree, there's something to be said for squeaky wheels.

Harley44

Joanne Elizabeth,

Yes, it is truly up to US to take charge of our health care. But the scary thing is that I don't know enough about all of this to know what is the STANDARD OPERATING PROCEDURE, and what is done "just to save a buck".

I sure can't wait til this is all over! I am so afraid that this dr. is only doing what he does because of the COST involved! and it is SO SCARY!!

Thanks!
HARLEY

shrink

Harley, I think I've done as much research in these last three months as I ever had on any subject since my life is at stake here. What I am unaware of (and I'm probably naive about this) is the cost of different treatments. All I know is that my insurance company is getting billed for $5000/infusion, plus drs. fees. etc. Thankfully, it's all covered. Maybe it would be to the doctor's benefit to go for the more expensive treatment including the Neulasta at $3000 a pop. I read that figure somewhere. I do want to make sure I'm getting the proper treatment based on what's in my best interest not on economics as you do but I have to have some trust somewhere or I'll drive myself crazy. I'm probably already half there.

Shrink
----------------------

"My life so far has been a long series of things I wasn't ready for." Ashleigh Brilliant

Harley44

shrink,

You are probably fine, since maybe your insurance will cover 100%, but I found that MOST insurances, mine included, have "allowable" charges. And, if you have a good insurance company, if you are seeing a dr. who's in the plan, you will be covered 100% of these allowable charges. Sometime, the dr. doesn't get ALL the money that he charges for a service... Now I know why I didnt' get Neulasta, if it costs $3000. That is a REAL shame what this has come to, if I can't have a treatment that will help keep me from ending up in the hospital, just because my DR. won't get 100% of HIS $3000 fee from my insurance company! I have Military insurance, and after the soldiers and sailors and other military personnel risk their LIFE for us, they should be able to know that their dr. will accept the TRICARE "Allowable charges", even if it is less than they normally charge... I am just FLABBERGASTED!

so, if you are ever told that you DON'T NEED a drug or something that should be part of your treatment, just think for a minute, HOW MUCH WILL THIS COST? and HOW MUCH WILL MY INSURANCE COMPANY PAY THE DOCTOR??

Sorry, but I am so upset to find out the charge for the Neulasta shot. No wonder he didn't think I needed it. Sure... let me DIE rather than give me something that may keep me out of the hospital and even save my life!

Sorry for going on... but this really stinks!
HARLEY

shrink

Let me find out if that's really true, OK? Didn't want to upset you.

Shrink

shrink

According to the Cancer.org message board the cost for one shot of Neulasta is $3000 indeed. Sorry to add fuel to the fire, Harley. However, you are looking out for your own best interests and I'm sure that will serve you well. You're a fighter! You shouldn't have to be dealing with this now. I would expect the govt/military to take care of those who are putting their lives on the line every day and their families but sadly, that doesn't appear to be the case.

All the best, Shrink

sharebear

I did have to fight with my insurance company to cover the Neulasta shot as it wasn't on their preferred list of medicines and was going to cost me $3,000 per shot. They worked with me and had it covered under my medical treatment vs prescription coverage by getting home medical company to come to my house and give me my injection as part of my treatment. My Onocology clinic did not carry the neulasta shot. They also carried the neupogen shot because of the price difference but my dr. wanted me to get the neulasta because the shot only had to be given once and not multiple times. So he had to prescribe it and have the home medical group give it to me. 5 of them would have cost me $15,000.

Sharon

Harley44

Sharon,

Thanks for the info. I know that all insurance companies are different. I am so upset! I will call my insurance case manager, and see what can be done, because I don't want to die from these treatments. I may have to stop them altogether.

My insurance only pays 75% of the chemo charge, so the doc is having to take a 25% loss from what he NORMALLY charges. But, that is I'm sure, far above HIS cost!

HARLEY

Cynthia1962

Hi Harley,

As you know, I've always been given the Neupogen. I don't think my dr even gives the Neulasta. While it's quite possible that your dr didn't give you the Neulasta for financial reasons (since he's an ass), it's probably not that uncommon for an onc to wait until a wk after the first tx to see how your counts do. Some women do fine without either shot, but you'd never know that if you were automatically given the neulasta. The main benefit of the neulasta is convenience, but it seems to me that it's se's are a bit more severe than the neupogen's for some women. I was relieved to get the neupogen instead because I was afraid to get a shot that lasted so long in case I couldn't handle the se's.

I've also read that while there isn't really a whole lot you can do to raise your white counts, resting and eating a lot of protein can help. So, running or heavy exercise probably isn't a good idea when your counts are low. Also, as other posters have said, avoiding germs will help as well. I just automatically assume my counts are low starting about 5 days after chemo until I get my counts checked after I've had the neupogen (day 14). It's a pita, but better safe than sorry. Then, once I know my counts are good, I stuff my face with all the food I'd been avoiding.

The neupogen should have your white count back up within a few days. When do you have blood work again?

Hang in there - infections are not a given! I'm still infection free (knock on wood) and my children have now been sick on two separate occasions and they aren't shy about coughing and sneezing on me. lol

Cynthia

Harley44

Cynthia,

Thanks.

No I didn't run on Day 5, only the first 2, because I was feeling good. I felt good until ONE week after chemo, and now, since the Neupogen, I'm having terrible back pain, worse than before, and other muscle aches. I was feeling feverish, too.

I don't know how you do it, because I would rather have ONE shot than 4!!! I had trouble getting all of it to go in, too. So at least my dh can do it this time, but next time, I'll have no one....

Thanks!
HARLEY

Anonymous

Harley...you are so brave! I don't think I could ever give my self a shot. My mom had 7 siblings, all but one had diabetis, so there's a chance some day I might have to take insulin. I just don't know how I could do it. I hate needles and can't watch when I get a shot or IV.

talktome

I am having 6TC"s My onc changed from 4 because of research that I can't find. I have ILC so extra bummer since
they are not sure that that type even responds to chemo. I had no.4 today. 3 was bad I had all the se's including crazy itching all over starting on day 14! Does anyone else have that( not tingling or numbness- itching ) It was the 1st cycle that I tried L glutamine so I wondered if that made me feel sicker in my stomach& diarrhea. Do you all get the neulaster shots?

Cynthia1962

Harley - If it's any consulation, I HATE getting the shots! The medicine stings something awful going in. Where are you giving yourself the shots? I've heard that it hurts less in the stomach, but I've never had them there. It also stings more if it isn't at room temperature and I know that from personal experience.

I wish I could give them to myself and avoid the hr round trip to get them, but my onc's office has never offered and I haven't asked because they would need to get approval from my insurance and then I would need to be careful not to break them, lol (they aren't cheap either - like $400 a piece, I think).

I hope your back pain eases up soon. Sounds as if the neupogen is working, though!

Cynthia

sdstarfish

I have a suggestion for lower back pain that has worked wonders for me - check these things out:
http://www.thermacare.com/index.jsp
They are pads that stick to your body for up to 8 hours. They provide natural heat. I know it is summer, but sit in the a/c and slap one of these babies on. You will be so glad you did!
Cynthia, thanks for the Nuepagen encouragement. It hasn't be s/e-free, but it is nowhere near the excrutiating pain I experienced with Nuelasta!

joanne_elizabeth

Hi everyone,
My husband gives me the bone shots in the stomach. Not fun, but certainly easier than half the other stuff we go thru!
It all depends on your insurance co. whether or not you can get them at home. We asked to do it this way. Some companies allow you to do this, others insist you get them in a doctors/hospital office. The shots need to be refrigerated before use, but they are premeasured, etc and ready to go the way they are shipped.I believe the shots cost a couple thousand a piece since the prices are not regulated for these drugs even though our tax dollars help to fund the research on them!
I am getting crazy itching as well, but I think it is an allergic reaction to an anti-diarhea medicine I tried.Who knows though with the cocktail of drugs we take?
One more work day to get thru !

Cynthia, I agree with you about the running. I don't think heavy exercise is good during chemo, walking is probably the best for awhile. Are you done your Ts?
Harley, you are brave! I can't imagine giving this to myself, but hopefully I won't have to try that any time soon. Hope the back pain ia easing up. It is supposed to be lovely in the Phila are this weekend !
Hope everyone is well.
Joanne

Harley44

Jean,

It was not really painful, since I put it in my stomach, but I am an idiot, since I couldn't get it all to go in. My dh is here, so he just re-inserted it, and emptied it all the way in...

HARLEY

Harley44

Cynthia,

I would give anything to have ONE shot, not FOUR!! The back is feeling better, but I guess it will start again tonight. Man, I've never had pain like that before!

I have to give it in my stomach, since I'm small and it's the only place where I have any fat... figures! I look like an undernourished Ethiopian, with a pot belly!

Well, the nurse said that these Nuepogen shots were "freebies", so I took that to mean that THEY get them free from the drug rep...

I will have to really be careful next time (after the Aug 28th tx), since my dh won't be here to help me with it. I didnt' get it all to go in, so he had to re-insert it and empty it all the way.

It's a TWO hr. round trip to my onc!

Only one more neupogen shot to go! But, now I am starting ALL OVER again, since the next tx is on Aug 28th!

At this rate, I'll never be finished! sigh...

HARLEY

Harley44

Joanne,

The back is feeling better, thanks! I think I could give myself the shot, because it doesn't really hurt, if you give it in your stomach. You just grab some fat from the stomach area, and stick the needle in! The hard part is when you push the plunger down, because it was hard to get it all the way in... you have to press it S L O W L Y! Otherwise, it will burn!

Thanks
HARLEY

Anonymous

This may sound strange but has any one on TC lost feelings in their Tongue? My tongue has been numb all day.

joanne_elizabeth

Hope everyone is doing well.
I haven't had that with my tongue, but they list swelling or tingling in the mouth of throat as one of the SEs for taxotere.

Joanne

KaraMac

Ladies,
Hair and breasts don't define the woman you are. It is all on the inside! People may look at you differently but I have found it is just for a moment then you are the same person you always were to them.

I lost my hair the first time in 2001 and it came back exactly the same (darn I wanted curls). The second time was in 2006 and it came back grayer and curly (curls never go the way you want them to). This time it seems to be growing back more salt and pepper and straighter.

The great part was that my husband thought my shaved head and lack of pubic hair was very sexy!

sharebear

My tongue feels like when you bite into something very hot and burn your tongue or the roof of your mouth. I suppose that's still better than having sores.

Sharon

sdstarfish

Jean:
Not my toungue, but I have a pin/needle feeling in one thumb sometimes. Taxotere?

Sharon: If you can handle them, DGL licorice tablets really help moth sores. They contain no sugar. You get them at a health food store. You chew them. They are bitter, but immediately your mouth ulcers feel better. Works for stomach ulcers too.

Joanne: I spent my summers growing up in South Jersey. When I was little we went to Wildwood, and as I got older I spent time in Long Beach Island and Cape May. Which general area do you live in?

joanne_elizabeth

Hi Lisa,
How are you feeling lately?
I live in Haddonfield, about 7 miles outside of Phila. We go to Ocean City, NJ at the shore. I grew up in North Jersey though and vacationed at Long Beach Island.
Haven't been to Cape May since I was pregnant with my first son. Stayed at a B + B which doesn't allow kids !

Joanne

sdstarfish

Hi, Joanne,
I know where Haddonfield is. Love the B&B's in Cape May, too! I feel pretty good. Very tired, but I believe the acupuncture helps a lot. After my week of hell I am generally ok for two weeks. Isn't it wierd to think that we have 1 more left? (Thank God). I was just remembering that awful feeling of getting ready to start chemo, when we didn't really know what to expect. But we're getting there!I am starting to see the light at the end of the tunnel. Still need a mastectomy though...I hate knowing that my tumor is partially still in there...very nerve-wracking. Plastic surgery consult on Wed. How are you this time around?

Footsox1

Quick question - Is Taxol the same thing as Taxotere? I get my first Taxol treatment in 2 weeks. I've been getting Adriamycin and Cytoxan for 3 times now... Taxol is next.

Yolanda

joanne_elizabeth

Lisa,
I think I was worse after tx3 than tx 2, not sure why. Just got me sooner and seemed to be more debilitating, but now it is much better as you said. I am glad there is only 1 more, although in some odd way it gives you a feeling that they are keeping the cancer at least at bay through treatment. I have a bit of an insecure feeling when it is done, what will do it then?
I had the mastectomy before surgery, but did not do reconstruction. I did do some physical therapy which seemed to help the range of motion issues alot. Not sure if I will do recon, but right now can't tolerate the idea of additional doctors or surgeries. Good luck with the consult!
Taxol is not the same as taxotere, one is Paclitaxel the other is Docetaxel.How they are different, I do not know. Taxol is the add on for some ACs.
Taxotere is given with C, which is what this discussion targets, or as TAC I believe.
Joanne

sdstarfish

Eyeball question:
I know it is a Taxotere s/e to have teary eyes...but mine seem to be goopy, too. Not like pink-eye...more like a clogged tear duct? Not sure.
I still have eyebrows and about half of my eyelashes. And I still haven't lost my peach fuzz. My little daughter calls me "Baby Head". How is everyone else doing with hair?

Cynthia1962

Lisa - so glad the neupogen is working out for you. All the hair I lost is coming back in now, and I already have a good amount on my head, but my eyelashes are thinning further. My eyebrows look like they might hang around so I'll take them over my eyelashes. lol I hope your eye issue goes away. I've managed to dodge that se so far.

Cynthia