Cytoxan and Taxotere ?

Anonymous

Harley

Many of the nurses mentioned names of good ONC, and one name continued to come up. He also is the head of the infusion center, He performed a gene-test on me last year, very nice man. My DH called my PCP's office and asked if she would please refer me to him.

We will be seeing our oncologist for years, so we really need to have a good feeling about them.

Harley44

Jean,

Yes, I agree, and I'm not too happy with my onc now, after he tried to switch me to Adriamycin, 'because it is less expensive', and he'll recoup MORE of his money that way! Because, my insurance is MILITARY, and he can't charge me the 25% he's losing it!! Only problem is that in my area, there are no 'in network' oncologists, so I may be stuck with him for awhile. At least til the treatment is done, and the hormone treatment starts... maybe after a year, I can get in to see a different onc, but who? I really do understand about dr. problems, and you REALLY DO need to be comfortable with your onc, since we'll be seeing them for many years down the road...

This is a tough battle, but we are going to WIN!!
HARLEY

Anonymous

Harley, there must be some other doctor in that area that treats cancer patients. He can't be the only game in town. I'd check back with your insurnace.

Harley44

Jean,

Well, this guy was a 2nd opinion for me, and the 1st guy was not too good, either. So... I'll have to do some more checking, but it doesn't look good. There are no oncs. in the TRICARE North region in North Carolina...

HARLEY

joanne_elizabeth

Hi everyone,
I am starting on day seven to have periods of normalcy after the last TC. I was spiking a fever and have severe GI distress this round.
I also have a port because we debated TAC vs TC for a bit so I got it just in case I opted for the TAC. I also got a MUGA scan only because we debated TAC vs TC. You need a port with adriamycin(sp). It has not been a big issue though I was surprised at the long scar to put it into me. Every once in awhile I smash into it with something and that is uncomfortable, but the nurses assure me it makes IVing me easier. TC is not associated with the heart risks of Adriamycin (sp) so they typically do not do MUGA scans for it.
Harley, I wish you the best finding a good onc. I am fortunate this young woman I got seems competent.
I empathize with all of you about going bald. I still have some hairs on my head, but I don't go naked except in my living room with the shades drawn.

Joanne

sdstarfish

Hi, Joanne: It took me seven days this time to recuperate as well. And I empathize completely. Although I'm glad round 4 will be the last one, I am kind of scared to see what shape my stomach lining will be in.

Harley, I really hope you are able to find another onc who would give you TC.

I think the waiting for baldness/hair loss is the hard part. Once it starts to fall out, you may find that you become ready (if not thrilled)to have it shaved.

So bummed. My white count was down to 1 today, and onc says the lowest it should ever be is 4. So they gave me the talk about ending up in the hospital, and then I got the darn shot again. This time, no Nulasta. Nupagen instead, 3 days in a row (at least). I hope the migraines stay away.

Cynthia1962

Lisa,

Wow, 1 as in 1.0? I had my bloodwork today and it's 3.6 and they sent me on my way without more neupogen. I have my last chemo in a week and I'm worried it won't be high enough by then. It was almost too low last time (2.2), but they gave me chemo anyway and just had me come back the rest of the week for the shots. Then when they checked my counts again a week after the chemo, it was still 2.2. So, I had 3 more neupogen and it's only 3.6. It's so frustrating. My poor bone marrow has had enough I think.

I hope the migraines stay away this time! You deserve a break.

Thinking of everyone - take care,

Cynthia

joanne_elizabeth

Lisa,
Best of luck with the Nupagen, hope the headaches stay away.
This TC is certainly not getting easier as it goes on, though it seems more tolerable for some than others.
I agree what can my GI system be like after the next one?
One more to go, thank goodness.
Losing hair is very tough, but at this point feeling semi-normal for awhile is my priority.

Joanne

sharebear

I often wonder what is normal to some of the drs. When I'm not on chemo and before my reoccurrence my normal wbc is only between 3.5 and 4. That's when I'm not ill. My count went as low as 0.9 the week after my AC and that was with my neulasta shot. It went back up to 2.5 by the next week and I still got my AC. Now on Taxatere I stay right around 2.3 every week and they say that's fine. The surgeon even did a biopsy on Friday (an area he thinks is just fat necrosis but wants to make sure) and wasn't worried about infections because my wbc has been so stable at 2.3.

So what is good and normal? Maybe everyone's normal is a little different?

Sharon

Anonymous

I've been having problems with my onc. Now I am really upset. I had my 2nd TC last Friday and my Onc feels it is NOT important to take a WBC this week so cancelled this weeks appointment! I won't see her until next week...day 14th. Day 6 or 7 of my first cycle my WBC was very ...very ...low. I'd think she'd be concerned it may happen again. I AM.

sharebear

Jean,

I would also be upset. If your wbc is low there are precautions you need to follow or possible get some help from a shot. Personally I think not checking it is irresponsible and you should be monitored.

Your Dr. doesn't have to be there to take the blood. I only see my Dr. ever 3 weeks, but the nurses do a cbc every week along with my chemo. Can you call the office and state your concerns and see if the nurse can do a blood draw for you?

I now must go for my weekly taxatere. Hope all goes well.

Sharon

Anonymous

I am absolutely amazed with some of these oncs. I had dose dense AC/Taxol. I had a neulasta shot the day after treatment. When I went in for my treatment my blood work was done BEFORE I could have chemo. My WBC was always high due to the Neulasta. What are some of these doctor's thinking? Perhaps there's a difference in which chemo we do? I don't know. However, when I did Taxol all by itself (no combo) I still got the neulasta and bloodworkd the same as when I did AC.

Geez!
Shirley

Anonymous

I get my Neulastia the day after my chemo, but that still didn't prevent my WBC from dropping to around "1" on day 6-7 on my first cycle. I assume it has done the same this on this cylce, (2nd treatment) as I, again, feel very weak, tired and dizzy.

My Onc told me to stay away from my dogs and birds. She inferred I should lock them away somewhere during my time on chemo. (This will be months as I have 6 treatments then surgery then more chemo.) I find this an unbelievably cruel way to tell a patient to treat their beloved pets. It's bad enough that they can tell something is wrong, my hair is all gone, but to abuse them is beyond belief.

I understand that when my WBC is low, I cannot get scatched etc., but to lock them away! Thank God my son and DIL are staying with me, as my DH husband is a ship's captain and gone 5 days a week. Without a little help, they would be dead.

sharebear

Jean,

I have 2 cats and 2 dogs. When I was getting AC my WBC always dropped very low the lowest being 0.9 around the 7th day and that was even after getting my Neulasta the day after chemo. I was told to be careful but never to get rid of the pets. Just be careful not to get scratched and have someone else pick up their poop. Of course I do have teenagers....not a problem. My husband and daughters have jobs and school. I am the one that's home with the pets all day. I feed them and let them out to do their business. I Just had to lock the cats in the spare bedroom right after my surgery cuz they like to sit in my lap and on my chest. The dogs know not to but cats have a mind of their own and would just jump up when I was taking a nap.....definitely not good. When I was awake I could discourage them and they were O.K.

Good luck!

Sharon

Anonymous

Sharon
I worry about after my mast more than with the chemo. (Aware of the scratches & Poop, and use a surgical mask & gloves to pull out a sheet of paper from the bird cage).

My poodles are used to sleeping with me and are crushed. They look up at me with their big eyes, like their asking, "What did I do?", "Why am I being punished?"

I do worry about after surgery. They get playful and jump around and might jump on my chest. I hear you must lay flat on your back after a mastectomy and then there's the issue of drains.

JayDub

Hi All-

Just checking in. I had my second TC last Thursday, and all went well. I had my count checked the week before (about 14 days after treatment 1) and my count had dropped to .6, but the Dr. expected it to pop back up within the normal range (which runs 4-11 for WBC). If not, they would do treatment #2 anyway and start with Neupogen. They checked the count on treatment day and it had popped up to 17...off the charts! I was high to begin with (before chemo I scored 14), but the Dr. said that the steroids tend to make it run a tad high. So, the bottom line is that (once again) everyone is different; there is no standard. I have been able to avoid an IV port after 2 treatments, and for that I am grateful. I did not take it easy after round 2 and paid the price for it over the weekend: tired and queasy (cured by naps and ginger ale). I am not liking the no-hair thing; I definitely feel like a freak, and have taken to wearing scarves at home when the kids are around. Funny thing is that my hair is starting to grow...tiny nubs all over my head. Is that normal?

Otherwise, business as usual. Two down, two to go. Take care everyone, keep your chin up!

Jessie

Harley44

Jessie,

Glad to hear that you're HALFWAY THROUGH!! YEAH!

About the hair... mine will fall out next week, and I feel the same way... I'll be a freak!! I have a wig, but realize I can't wear that ALL THE TIME! So, I'll have to get some bandanas or scarves.

My WBC was .9 at my bloodwork yesterday, so I got nupogen shots to take home and antibiotics. Stupid oaf of an onc! If he'd given me the Neulasta, this wouldn't have happened!! My pre treatment WBC was 14, but I got the b/w 3 days before the tx.

I drank lots of water & ginger ale after my last tx. My 2nd will be on Aug 28th.

Take care,
HARLEY

Harley44

jean,

I am hoping that cleaning the litter box will be ok, I am going to wear gloves, and now try to wear a mask too. Also, someone told me you are not to clean the toilet, either while getting chemo.

It's so hard, but we have to be vigilant!

hugs,
HARLEY

JayDub

Hi Harley-

Your count is supposed to drop to nothing in between treatments; that means the treatment is working. The count is supposed to go back up in time for the next treatment, and if it doesn't they want to give you the shots to help it do so.

Yes, wigs are not to be worn 24X7...I'm good for about 6 hours a stretch and then I need to leave work! Check out headcovers.com for some nice head gear.

Jessie

Harley44

Jessie,

Yes, I know that the WBC drops after chemo, but... it seems dangerous to let it get so low, b/c of the risk of infection! If I end up in the hospital, there will be HELL to pay!

Thanks for the website info... I read about it here, but haven't checked it out yet. I just can't stand the idea of NO hair... and my hair may not grow back for years, b/c it grows so slow!

HARLEY

JayDub

Yes, the risk of infection is high. My doctor wants me taking my temperature days 10-14 as my counts bottom out, and to call as soon as it hits 99.5 at which point they would pump me with antiobiotics. The list of things to do to avoid infection is huge...but worth sticking to. I miss my fresh fruits and veggies, no raw nuts, I've had my acrylic nails removed, lots of handwashing. I'm contemplating working from home those days as well.

Jessie

Harley44

Jesse,

Don't you get a Neulasta shot to keep your WBC up? I hear on these boards that everyone gets them, or else they have problems.

HARLEY

shrink

Harley; I haven't gotten Neulasta shots at all. I've just finished my 4th tx and my counts are good.

Harley44

hmmm... thanks Shrink... I guess you are the lucky one!

As for me, I'm going to insist on Neulasta next time! I may end up getting kicked out of his office, mid-treatment! That would be MY luck!

HARLEY

Anonymous

Harley....wear glasses also. I think sometimes these doctors just don't think (sometimes?) What's worse, spending 15 seconds cleaning, with mask, gloves, eye protectors, or letting the stuff float around in room...it has to get into the air.

Harley44

Jean,

Thanks! I wear glasses anyway, so I think I'm covered.

HARLEY

JayDub

Harley-

No, I have not been getting shots to boost my counts...I was trying to avoid any more meds if unnecessary. It sounds like ladies have had ugly side effects with these shots; fortunately, my counts have popped back up on their own. My onco threatened the shot if my counts were not back within range, but no need. I attribute this to clean living and lots of luck!! Hopefully, that luck will continue for TC #3 and #4.

Jessie

Harley44

Jessie,

Good for you! I was doing great after my first tx, even walking and running every day! So, I think low blood counts are dangerous, and I don't want to end up in the hospital. If that onc won't give me the shot, and I end up in the hospital, he will NEVER hear the end of it!

HARLEY

shrink

Harley, I don't know how lucky I am but the onc explained to me that Neulasta is not given preventively, only if counts were low (as least at my cancer center in Phila).

I have asked my doctors probably 100's of questions which they have answered patiently and in a way I could understand and which made sense to me. I have faith in the team and assume they know far better than I do what the next steps should be. For example the choice of Adriamycin fit my dx, stage, age, nuclear grade, size of tumor, ER etc. I never dreamed that I was getting it because it was cheaper than something else. I'm sorry you don't have the same confidence in your group.

Best of luck, Harley. Sounds like you're on the case.

joanne_elizabeth

Hey Shrink,
Which ca center in Phila, Fox Chase or Penn or Jeff? I live in So Jersey and go to Cooper though I did get a couple consults at Fox Chase.
As I said I routinely get the bone shots and fortunately so far I haven't had many issues with them.

Harley,
Good luck getting what you want. I often think the squeaky wheel ...
They almost double dosed me on steroids the last treatment til I questioned the nurse. I feel I really need to try to manage the docs and nurses even though they probably have good intentions.