Anyone starting Chemo in August 07?

Hi all,

I have to to say that your posts made me cry the first happy tears in a couple of days. 

I am waiting for the radiology dept to call with a date and time  for the pet scan.

Im going to get a second opinion as well but dont have a date for that either.

So the short of it is I dont know alot about much.

Funny how much I was dreading the mastectomy now I wish thats all it would take. At least then I still had hope of a cure. Now I suppose Ill be fighting BC for as long as Im destined to be here. WHAT A DRAG!!!!!! 

Sorry if Im depressing but Im really having trouble finding my happy thoughts.

Harley -  WOW its great to hear your doing so well. You Da Bomb.

Kim 

Kim,

I HAVE been feeling good, overall.  Thanks for the encouragement!

I am praying that your PET scan will show nothing... only b9 results!

Hugs

Harley

Kaye,

Hi... Hope you don't have any lung damage! 

Yes, I AM doing well.  Maybe 'cause I didn't ALSO have rads?  I don't know why, but anyway, I am doing just fine.  I DO struggle with fatigue still, but my thyroid is off again, and my primary care dr. LOWERED my dose of Synthroid, and I think she lowered it TOO MUCH!  I'll be seeing her next week for a follow up, so I'll know something then.  I worry about the fatigue, since that was the only symptom I had a year or so prior to my bc dx...  my ex primary care dr. told me "there are lots of causes for fatigue... for instance, you may have cancer...."  Fast forward a year or too, to March 2007, and my bc dx.  It is too eerie, and now whenever I feel tired, I get worried and scared about bc recurrence. 

I DO still have eyebrows, but only 'cause my eyebrows used to be EXTREMELY thick!, but they are very thin.  AND no eyelashes!  I look like a plucked chicken!  Only now, I no longer look like Sluggo, since the hair on my head seems to be coming in, and getting darker.  But, it is STILL so short!, and the outer edges are even shorter, and WHITE!  I had SO wanted it to turn darker, but it looks like that ain't happening. 

I am SEVEN weeks post chemo, and THREE weeks post reconstruction surgery...  WHEW!  Also, just over a week ago, I started taking the dreaded Tamoxifen!  So far, it feels like I have been getting some hot flashes occasionally, but I can't tell, since it was warm here for about a week, just a few days after I started taking it...  I guess we'll see....

Keeping you in my prayers! 

Kim,

You are in my prayers!  When is your PET scan?

Nash,

Sorry about the skin issues.  Let us know about the nail biopsy!  I'm keeping you in my prayers! 

Why did the Italics go on.... this is so weird!

Hugs to all,

Harley 

Hi,

Nash -  Im still here. Feeling a tad better but tears still come way to easy.

Mt PET scan is tuesday of next week. The lady told me since I have cancer in both breast they will have to give me the IV in the FOOT!!!!!!!!!Has anyone out there ever had that?????????? I want to cancel the scan Im so scared. I ask her if they would numb it first and she said No, whats up with that?? she said something about it messing with the test but I tend not to believe it.

Im sorry to hear your having so many issues as well. Ive never heard of the nail thing but Your in my thoughts. 

Harley - The plucked chicken comment was a gas!!! I wont be having any hair for awhile so Im just going to live vicariously thru your hair. LOL

Kidsmom - Thanks for the uplifting story it helped .

OK Im going to pick your brains for a minute.

Heres my situation Id like your advise as fellow BC sisters. Or maybe one of you have had experience with this. Anyway Im going to get a second opinion but I really cherish your advise.

I have IBC in both breast. The rt breast is still dark pink and slightly thick even after 6 rounds of chemo. I also have cancer In the nodes under both arms.But the cancer has gotten smaller with chemo.

The original plan was 6 rounds of chemo then surgery then rads. Hopefully achieving NED status. (or even a cure)

Now that the bone mets have reared there ugly heads I have two conflicting words of advice from two oncologists.

Doc #1 says - Go forward with surgery, then more chemo than rads. Hoping to bring me to NED. Saying the surgery will help control the disease since the right breast has the most cancer.

OK

Doc # 2 says - There is no real need for the surgery because the surgery will not effect my rate of survival. So Go back into chemo now and blast the cancer more. Then maybe rads. Hopefully achieving NED status.

In my uneducated mind it seems to make since to have the surgery (even though In will HATE it) because the right breast still has a good deal of cancer in it. If they take them off there would be less cancer to fight there for giving me a better chance at achieving NED status. The surgery would remove both breast and the nodes under both arms.

Doc # 2 says even though it seems that way statistics say thats not how it works.

What do you all think? I know your not Doctors. I just want to bounce it off of you.

Thanks Kim 

• Kim, I agree with the other girls.  A third opinion with a heavy-duty onc would be super if you can manage it and do so fairly quickly.  As simply a bc sister, I think surgery makes most sense.  As I understand, cancer in the breast can very easily break off and travel to other locations in the body.  I would think cutting off the supply would be the best idea (isn't that how we northerners won the Civil War?).  If it were me, I would want to know that i did everything under the sun and was as aggressively treating the cancer as I could be.  Maybe it's all in my head, but I would want the mast & node removal to get those nasty large spots of cancer out of there.  Finally, again, maybe all in my head and not supported by logic or science, but it seems more optimistic to go ahead with the surgery.  "Yes, new hardships have arisen, but here are a few areas we know we CAN take care of and get rid of the cancer."  Surgery will work to remove the cancer in your breasts and nodes, I would want it at least for peace of mind.

When i get overwhelmed at work, I make lists of what I need to do and as I feel myself getting sidetracked, I remind myself to "Work the List."  As i see it, having the mastectomy to remove the cancer in the breasts and nodes is at the top of your list.  It's something you know will work and will solve one part of your problem-- it's progress.  After a mast, you can work down the list and attack the mets.  It makes sense in my head, but whether it's medically sound, I obviously have no idea. 

Clearly, we all know you need the advice of an onc you trust and a treatment plan that you feel good about.  One thing I have learned from everyone here is that you need to really advocate for yourself thru all this and be sure you are really heard by docs, and nurses, and rad techs, and everyone.   

I really hope this works out for you.  You are often in my thoughts these days.  Angie

Kim--The girls have given you good advice. One thing I would add is that based on my anecdotal experience, many oncs delay or forgo surgery in a Stage IV setting. The logic is that the chemo will take care of the cancer, and since it's already traveled systemically, it doesn't matter if the breast are on or off. That's been the case for my mom (she never gets mammos on the remaining breast b/c she's always on chemo). I know of others who have presented at Stage IV and had their surgeries put on hold.

That being said, it seems to make more sense to eliminate a good portion of the tumor load, like onc #1 said. It seems like an unnecessary strain on  your immune system.

What do the girls on the IBC and recurrence boards say? There probably are several of them in the same situation over there.  

An option might be to delay the surgery for now, do more chemo, then do the surgery when they get the bone mets under control/eliminated. One advantage of leaving the breasts on is it gives you a good barometer of how the chemo is working--you can see the results with your own eyes. Also, if you delay the surgery, you can get going with the chemo right away.

It's unfortantely one of those decisions where there are an equal amount of pros and cons. I have no idea what is the most prudent decision medically, and obviously the oncs don't know 100% either. So it will come down to your gut feeling.

DeAnn--I've got you in my thoughts today, too--sending Happy Herceptin vibes your way. 

Hey Ho Ladies,

I got my Herceptin today without any trouble at all. Hooray! So, I'm back on the Herceptin bus (better get my Kleenex packages back in my purse for the "herceptin shnoz" as Nash's mom refers to it!), but I just increased my chances today of staying NED by about 50%! Whew!

Kimmie, a really good clinic will usually find some way to fit you in,especially if you get a referral. Don't be afraid to ask your onc for a referral to a major institution near you for a breast cancer specialist. That helps to grease the wheels, and, unless you've got a headcase doctor, most are more than glad to help you get an outside opinion and will facilitate by providing all the scans and treatment paperwork. Mayo clinic fit me in two days after I called (with the help of my onc referring me. Without her help it would have taken about 9 days to get in). For some of these really large, prestigious clinics, over half of their business is just providing second or third opinions.  It is so worth it. I got such piece of mind from talking to them because they have often seen EVERYTHING and have access to clinical trials, etc that smaller offices won't know about. Of the top ten cancer hospitals according to US News & World Report, two are in your region. Johns Hopkins Hospital in Baltimore, and Duke University Medical Center in Durham NC. Probably both are a drive for you, but they would be great places to look into. I think the extra experience that another, objective doctor brings to the picture can be invaluable. Let me know if you need any of their web address or anything. (By the way, I got the info out of Kris Carr's "Crazy Sexy Cancer Tips" book. I love the book and highly recommend it. Makes you feel empowered!)

DeAnn  

DeAnn--hooray! So glad the Herceptin went off w/o a hitch! That's really great. I had all my fingers and toes crossed for you today.

Jackie--I'm supposed to meet with the rad onc before doing the simulation. I'd assume that's standard--I'm surprised you didn't get a chance to do that. I'd be annoyed, too!

June,

So sorry to hear this news.  The whole situation is horrible, but surgery so close the the holidays!!You certainly don't deserve that.  I pray for your strength.  Maybe blocking it out right now is a good thing.  One positive thought is that you will probable feel a relief when the mast is done.  You will have some peace of mind.  Please try to stay positive.

Lots of hugs, Jackie

June,

I just wanted to say that I am very sorry to hear that you found a new lump.  That really stinks!

Hugs

Harley

Hi all,  i will address the good news first, to benefit from the endorphins:

Kaye- I am glad to hear you aren't having skin reactions.  Since I don't start rads until jan '08, i am happy to hear your good report.  I keep saying I have heard rads is the easy part-- glad for once I may not be full of it!

DeAnn- I am sooo happy to hear the Herceptin didn't give you any negative reactions this time.  You must have been nervous, but powered thru.  You are an amazing lady.

Ok, good news is over.  Sorry to hear of your new problem June.  I know it's hard but try not to worry.  The surgery will take care of the breasts and nodes.  And I bet the path really doesn't take that long.  I had my surg on 10/25 and had my path reports early the next week.  Try not to fret too much and I will be thinking of you.

Try to have a good weekend everyone.  We've finally got a snow that's sticking to the ground here in NY.  Maybe between post-chemo naps & drooling, the fam & I will get the Christmas tree put up.  Uggghhh.  Tis the season!!  Angie