TRIPLE POSITIVE GROUP

My lab wouldn't use my port for blood draws. I was disappointed, especially since I always had to use the right arm due to having lymph nodes removed on the left. My port was only used for chemo, except after my diep surgery when my IV was getting so sore. Even then I had to beg them to use the port. Apparently not everyone feels comfortable accessing a port.

i cannot tolerated the l glutamine powder dissolved in water ( for the prevention of neuropathy), makes me nauseous. do you know if the tablet form is just as effective?

Thanks guys for the info on your own experiences. Feel a small bit better today so hopefully if it improves a little every day it will feel a lot better in a weeks time. Yeah having the whole shebang including herceptin for a year so I'm sure I'll be happier to have the port in the long run. It's just I suppose I was prepared for pain and discomfort after the operations but not after the port so it came as a bit of a shock.

Started my B6 tablets following all your advice too :-)

Cath, HER2+ breast cancer is serious business. Some people with small ER+PR+ HER2- tumours do well with lifestyle changes instead of chemo etc, but that is the easiest kind of breast cancer to beat. Before Herceptin, the five-year survival for HER+ breast cancer was 40%. Before you decide how to proceed, consider what you have to live for and how much temporary inconvenience you are willing to bear to protect that.

That said, you might find what you are lookibg for in some of the alternative therapy threads here.

Tunegrrl - Does this mean 40% of the HER2+ women without herceptin died within 5 years of diagnosis or just their cancer returned within 5 years of diagnosis? I've wondered about it but no one seems to discuss it.

guys, for those using lupron, how often do you get the shot?thanks

I would never dear to try something different than what the medical team is suggesting against this cancer. It is hard time with all the treatments and psychological issues that follows, at least for me. When everyone is explaining how aggressive this type of cancer is I do have to admit I have a hard time grasping this statement and do not understan completely the aggressiveness. How aggressive is triple positiv cancer? What is the meaning of the word aggressive in this context? I just finished radiation and feel completely "beat". The worst of it all is in my head and the fear for this to come back. Yesterday I was put in a big machine to check my bones, in a few weeks I am heading for another machine checking my lungs and other organs...Results in a few weeks...the constant poking, needles, tests and so forth is wearing me thin. I know I can not go back to my previous work because I would not be able to handle it. What will I do with my life if I am forced back to some kind of work. What would I do to support myself? I am worried and alone. Regarding the question regarding the type of toothbrush. I was told to visit the dentist at this point before further treatment. They suggested a soft electric toothbrush. They also had to pull out a tooth due to the roots being broken. So now I have one breast and lost a tooth. I do feel broken.

Kae I get my lupron shot every three months. While I was in active treatment my insurance covered this 100%. Now that I'm "better" they are not considering it preventative and I now have to cough up 10% of the price of the shot. I am fighting this on appeal with my MO's help, as the shot is VERY expensive.

Kattis,

I'm sorry you feel so wiped out by treatment. I know how that feels. While radiation was easier on my body than chemo, I did feel that it was somewhat dehumanizing. The techs were all very nice, but they were pushing my body into a very specific position on a daily basis. It's hard not to feel like a piece of meat. Re: "aggressive" -- HER2+ cancer has an overexpression of the protein HER2, which tells cells to keep replicating. As a result, it is typically Grade 2 or 3, and can grow/spread very fast. Re: going back to work -- it may take awhile for you to figure your next step. Take some time to heal first. ((Hugs))

Thanks Tunegrrl - I'll check it out just to keep my head out of the sand. Annual mammo is Monday and although I don't borrow trouble, looking forward to having it over with.

kae, there are actually 1, 3 and 6-month doses of lupron available (about $400/month here no matter which way it is administered).

I started with three monthly doses and ended with a single three-month dose because it was covered for me at that time (in Ontario during chemo most drugs are). I even filled a rX for another three-month dose, in case it would offer a survival advantage but then decided against it as per my MO (the pharmacy held onto it while i found out and just returned it into their system).

My hot flashes dissipated and went away about six weeks after chemo ended, despite being still officially under the influence of lupron. So i think chemo+lupron really slammed me into chemopause, and the lupron alone did not account for my hot flashes.

As for food, i developed a passion for canned minestrone soup and baby potatoes with butter and salt. I have a friend that survived on 20 cheerios one day during chemo. Whatever it takes. I hope you find something yummy soon.

Ha! I liked salty foods during chemo, too. I also found sweets bearable, even though I usually don't have a sweet tooth. My friend Aimee used to bake me chocolate chip cookies every week. Yep, whatever gets you through....

my three month shot is over $2,100 here in Boston. I was fully covered until I switched insurance in June. Then I was on the hook for 10% of the price for September and December. I switched insurance again in January (company I work for switched plans) and I've requested an estimate of what they will cover before I get the shot in March.

The argument I had with the insurer was ridiculous. "We don't consider it preventative because you already had cancer." So they'd obviously rather pay for my recurrence than pay for the darn shot. My cancer eats estrogen for lunch dangit! Sigh....

was able to eat a whole apple yesterday with lots of salt.i will try that with grapes today. SpecialK, will try plastic spoons. have GI issues also, reflux is bad so bland diet for me in the beginning also.. i will try cookies also.thanks ladies.

Kae, I was able to tolerate cottage cheese well and anything potatoes, especially potato dumplings. The saltier the better.

I have a very sweet tooth, but I couldn't even look at anything sweet without overwhelming nausea. I was told to avoid raw foods, so I didn't have any. I love pizza, but the tomato sauce on the pizza felt revolting to me.