TRIPLE POSITIVE GROUP

NWArtLady

Beachbum, one of the best things I heard was from a wise friend who told me that she and I had cancer as soon as they took it out of us!

moni731

Lago- Thanks, I'll check those links.

cornishmaid46

Thanks  for the replies,much appreciated,had reasonable amount of sleep last night , just got to wait ow for scan appointments xxxx best wishes to all xx

Jennt28

Hi Cornishmaid,



I hope you get your appts soon and that all is as good as it can be :-)



Jenn

TonLee

Have, had.

As a general rule, I haven't really told people about my cancer.  And the few times it was pertinent I said, "I was diagnosed with BC in 2010."

But have/had?  That's a good question.  It does feel dishonest to say, I HAVE cancer, because I don't know if right at this minute there is any inside of me. 

It also feels a bit presumptuous to say I HAD cancer for the exact same reason and because in my life experience everyone has eventually succumbed to it.  (Morose I know, but that's my experience.)

I guess, for me, there is no all encompassing one word answer. 

Yet. 

lago

Tonlee there is a woman in my building that is a 35 year survivor. I understand that in your circles everyone may have succumbed to it but there are many people outside your circle. I had shingles… but the virus is still in me. I don't assume I'm getting again. (knock on wood. Shingles are the worst).

TonLee

Lago,

That's great about the woman in your building.  The fact you can name one, or two or even three is a sad state of affairs compared to the number of women who do die of this awful disease every year.

I know there are women out there who live long lives without recurrence.  My neighbor is one so far, though she said she was stage 0?  But as I said, all the long term survivors I know personally, most especially in my family...on my dad's side every single person who died in the last thirty years, died of cancer...and all but one (died from chemo complications), were told it was "gone."  I think I'd be somewhat foolish to believe, with my family history, I beat stage 3 cancer.  I have no doubts, barring an accident or a cure, it will be what eventually takes my life.

That actually doesn't bother me as much anymore.  We all die.  Some days I try to remember back before BC....I wonder how I lived with the uncertainty of death's method...of not having a specific thing to fight.  Now that BC has made me focus on death, made me reconcile the finality of it, the method isn't really important.  The peace is. 

EDITED TO ADD:  I reserve the right to change my opinion!!  lol

Kelloggs

 Tonlee - I know exactly how you feel.  When I was diagnosed as IIb I thought I was gonna kick it's ass, no problem.  During the routine scans I found out that I was actually stage IV from the get go.  I intend to continue kicking it's ass, (NED after chemo) but I also realize that this is probably what I will die from someday.  I may live with stage IV for a long time, but I will more than likely die from breast cancer.  I am ok with that in a strange kind of peaceful way.  The only thing that bothers me is what that will do to my family.

I also reserve the right to change my opinion! LOL

ArleneA

I definitely use the term HAD and my initial diagnosis was December 2010.  I feel every attempt to remain positive is so important.  I do think about it almost daily though and still have many sleepless nights.  And, the decision to return to Herceptin has me stressing all over again.  Still haven't decided what to do.

After I reported my issues to Genentech, they sent me a letter asking for further information so they can report my effects to the FDA. 

Arlene

lago

I do know what you mean Tonlee. Both my grandmothers died in their late 60s of cancer (colon & lymphoma). But my mom is going to be 75 and dad just turned 80. You seem to have taken such good care of yourself that even with this diagnosis I still feel you have a chance of already having it beat. So far I have every reason to believe I have beat it too.

Arlene what issue did you report to Genentech?

ArleneA

Hi Lago:  My EF dropped and they stopped Herceptin after 10 treatments and now want to start me again and try to get 4 more treatments in me....I don't think I'm going to do it.  I called Genentech to see what their experts thought and they were happy I called and gave them feedback on negative impacts from the drug.  I'm guessing a lot of the oncologists don't take the time to report the issues.

TonLee

Lago,

Call me optimistic but I'm hoping to last long enough to say..."remember when women died of breast cancer?"  lol  Science is a moving thing!

Kelloggs, I am so glad you are NED!  And I pray it stays that way!

TonLee

Oh I almost forgot!  I have my exchange dates!!  Looks like I will fly to Texas July 15th, pre-op the 16th and EXCHANGE JULY 18th!  Then I have to stay two weeks for a post op follow up.

My husband will only be there the day before, of, and one after the exchange..then he is coming back to Ohio to be with the boys.

At some point I will have to check out the exchange thread.  I'm hoping it won't be to big a deal and plan on driving two days after...I drove with the MX and drain a couple days after because I didn't need the pain killer...I can't imagine the exchange will be any worse than that.

Of course now that I've said that......lol

lago

Tonlee the exchange is much much easier than MX. Remember they don't take nodes which was the worst part of the MX. I had fat transfer so my tummy was sore but the exchange part was easy. My issue was the anesthesia again. Very nauseous but day 2 I was fine. My friend from this site who just had her BMX last week got Emmend for nausea. I saw her the next day and she was sitting up in a chair. Wish they gave me that but I didn't know I would be that way. She's had surgery before.

ArleneA

Good luck TonLee.  I'm sure it will go just fine.  Hey, did you shut down the Herceptin blog?

Moonflwr912

Good luck, Tonlee

vickilind61

TonLee,  great news about the exchange.  Being a bit snoopy, but since you live in OH, why are you going to TX for the surgery?  Just wondering, and if it's none of my business, just tell me. 

TonLee

Arlene,

No the Herceptin Heart Attack thread is still alive and kicking.  http://community.breastcancer.org/forum/69/topic/776430?page=18#idx_514

Vicki, my PS is military.  He moved to Texas and the woman who replaced him is right out of training.  Since she is somewhat inexperienced, and since I had healing issues (open MX for 6 months), and he's been in there a couple times already, I feel it is in my best interest to have him finish what he started.

Of course continuity of care is not a concern for the military, so what that the new PS is right out of training!  My PS wrote a letter explaining he was best suited to finish my reconstruction, his concerns etc.  But policy is policy.

So we are paying for travel, accomodations, etc out of pocket.  And juggling two kids very busy schedules.  It's tuff.

dancetrancer

TonLee...you may already be aware...but there are some angel flight programs that will pay for your flight if you need treatment somewhere else.  Also, some of the bigger cities have free or low cost lodging for cancer patients - check the American Cancer Society - you can search by city.   Oh and many hotels will offer a medical rate if you ask. 

sheila888

TonLee..I know NY has free accommodations if you are out of State and receiving treatment

i don't know if it's just the patient or the family also???

Where are you traveling and what Hospital ????

If they have a place...you are eligible for the help......

♥

Anonymous

Tonlee....i think you will be fine. With my implants, the only painful part was where he lipod under my armpit.

Jennt28

Here's my Facebook update this morning. I'm hoping somebody can relate...



Tissues. Never thought that tissues (the having of them) would dominate my life. But they are now.



In fact, if you've been thinking "what can I do to help Jenn" the answer is easy. Just have a dozen boxes of Sorbent Velvet tissues delivered. Gift wrap optional.



Why tissues? Well, I'm going through them at a fast rate. You see, the Herceptin that I will get every 3 weeks until March next year gives you a runny nose (and hopefully keeps me from ever getting breast cancer again). It's not your normal "oh I need to blow my nose" type of drip though. No, this is a constant drip and what nobody told me ahead of time is that my sinuses would be sensitive and so the drip is actually a very regular, elegant, light bleed! It's not pretty...



So currently my life is dominated by tissues. Having them and disposing of them discretely. If I don't have one I drip. I panicked the other day that the dog was injured because he appeared to be bleeding. But no, I had dripped on him...



Forget meals! Send tissues!



Jenn

Momof2inME

Jenn: I too have the extra drippy nose and nosebleeds. I have tissue boxes in every room of  my house and about 4 extra boxes stock piled in the closet. Saw my kiddos' ENT last Friday told me my septum is "shredded". Yay (sarcasm) another chemo gift...

Jennt28

Shredded? Did he explain what exactly that means? Will it get better after we finish the Herceptin?



My docs don't seem concerned at all...



Jenn

Momof2inME

Jenn,

He suggested each side of my septum be cauterized. Freaked me out too much so I am trying a product he suggested and rechecking 3 weeks after finishing taxol. If still bad then I will attriute it to Herceptin, bite the bullet and have it done. My nosebleeds are pretty bad. 2-3/day. My onc actually sugested having it done after taxol#2 when the nosebleeds started, but I really just didn't want to deal with anymore doctor. It's been 2 months and I can't have nosebleeds forver I hope.

dancetrancer

Jenn - I'm still WAY too early to know if my dripping nose (and blood one time) is due to the chemo or the Herceptin (I'm only finished with 2 TCH's, #3 tomorrow).  However, the advice I got was to keep the nose moisturized in some way.  Some here had success with running a vaporizor at night, using Aquafor in the nose, or using natural saline nose spray.  I experimented with putting a bit of baby oil in my nose once a day (using a Q-tip) when my nose seemed dry and yet runny.  It seems to clear the issue up within a day or two.  Again, this may be due to the Taxotere and may not fix the Herceptin only "runnies".  But maybe?  

dancetrancer

Wow Momof2 - that sounds bad.  I sure do hope you get some relief soon!

Momof2inME

Thanks dancetrancer!!

Feels like I need to handle one problem at a time and right now it's finishing taxol tomorrow.

Anonymous

I had some nosebleeds also, although they werent terrible. They stopped after chemo.



The runny nose continued while on herceptin, and surprisingly to me, has continued now that I am 2 months past it. I literally can bend over to pick up something on the floor, and boom, dripping. Tissues are my friend! I too keep them everywhere. I dont even have to blow it now. Just wipe. It is totally clear and almost like tears.



During chemo I used ayr gel and Ayr spray and it helped a lot. Tried the nettie pot. Didnt do much for what I was having.

vickilind61

TonLee, I am an army brat and ex of air force, so I understand.  Glad the military decided to accomodate your needs.  Good doc you have! 

JennT, you make me laugh, and yet, knowing I am heading toward this, it is also a little discomfitting.  Guess I better start stocking up!