TRIPLE POSITIVE GROUP

PoseyGirl

Debiann, thanks...I started the krill oil about 6 weeks ago? And the first little episode of this was about 3 weeks ago? I was going to remove one supplement at a time to see...thanks for the thought.

SpecialK, did you have stomach issues? Any probiotic you recommend? I will go to the health store.

Deni, thanks for that too. I truly hope it's the Herceptin. My last infusion was July 13 and this really kicked on July 18, so I'm just not sure.

I'm so scared about liver. The nurse doesn't think it sounds like that and said my July 5 bloodwork showed normal levels on the liver markers. I asked her "could there be liver issues and yet normal blood results?". She replied that if there was a problem there, the blood would show something wonky. I hope she's right.

Icedgem

Thank you everyone for the support, I'm so glad I found you.

deni1661 - I totally agree with you, as soon as the oncologists decide on my treatment plan, I will be a lot happier and can focus on fighting back

I am meeting with my MO tomorrow, so hopefully I might get an indication of what is going to happen. The tumor board meeting is tomorrow also, so it's a big day - I hope. I'm expecting to be told something.

Tough cookie - thank you for coming forward, I was led to believe it was a fairly rare combo, but i am on information overload right now after that genetic test.

Will keep you posted - Thanks again and take care

Tresjoli2

Posey the same thing happened to me. My doctor had me take prilosec for four weeks to "reset" my stomach...it worked like a charm. I can't remember why now...but I remember that happening to me.

emily_mh

Thank you all for answering my question about lymph node biopsy and staging. I guess I'll just have to wait until surgery to find out.

Also, today I found out I have an infection around my port. Has anyone had this problem and did antibiotics clear it up in time for next round? I wonder if I can just change to IV in arm

Tresjoli2

Posey forgot to mention the prilosec was 2x a day for the 1st two weeks and then 1x a day

moodyblues

Hey everyone, had a bit of a setback this week, my labs came back very low with my platelets on Wednesday at 45,000 and then by Friday they dropped to 27,000 and they sent me for a platelet transfusion.  At those numbers, I have an increased risk of bleeding without injury.  I REALLY did not want the infusion but the oncology nurse and MO felt it was necessary in order to keep me safe.  Of all the things in the world I didn't want, was this.  I wanted to wait till Monday to check again (before transfusion) but they seemed very concerned about me waiting that long.  I was told that they would adjust my chemo on Wednesday but I have to have labs again Monday before even proceeding.  As much as I hate chemo, I don't want this to set me back!!

Melanie

coachvicky

Moody Blues (Melanie)

Happy you trusted your Oncology Team and did what they recommended. I think this won't set you back but help you move forward.

Vicky

ElaineTherese

Moody Blues,

In the short run, it's no fun to prolong treatment. In the long run, this infusion will be but a blip. Take it easy and listen to your doctors. ((Hugs))

Lita19901

My surgeon called this morning and I am lymph node negative! Stage 1A, 1.5 cm, clear margins, Grade 2. Funny how your perspective changes, but this is such a relief

moodyblues

Thank you Vicky and Elaine.  Trying to do what they tell me to do and rest.  Have a great weekend!

TYE89

----Posted this in main Her2+ Forum & also posting here----

Hello ladies! This is my first post. I have been reading for a couple months. This forum is priceless!

Here's is my story:

-initial path report IDC 2.3cm Grade 1, ER 90%, PR 90%, Her2+ (FISH ratio 2.0), nodes look clear

-second path report at MDA Houston - notice Her2 - IDC 1.8cm Grade 1, ER/PR 90%, Her2- (FISH 1.81), nodes look clear

-dbl mastectomy by choice at MDA - I am 48, with wonderful DH & 3 children - I want to take no chances of Her2+ issues

-surgical path report - IDC 1.6cm, Grade 1 or 2 (discrepancy on report - values add up to 5, so still Grade 1, but says Grade 2. Waiting for response from pathologist), ER/PR 90%, HER2 + (FISH ratio 2.0), 1mm micromet in 1/5 sentinel nodes. -------- self contained, no LVI, very negative margins, 5 SENTINEL NODES REMOVED (4 were tiny, 1 normal size, all clear during surgery), the normal sized node ended up with a 1MM MICROMETS.

-I met with surgeon last week. MDA nomogram says 3% chance it is in other nodes, Sloan Kettering says 5%. OS doesn't expect RO to recommend radiation bc of my tumor size. I am left with the decision of watch nodes via US or go back in for ALND.

-Surgeon says lymph nodes & chemo are treated independent of one another.

-I meet with MO Monday & RO Tuesday.

-Before surgery, MO said if tumor stays under 2.0 cm, I would have 12 wks Taxol w/ Herceptin

-I have have BMI of 22, work out regularly doing spin & barre classes, eat pretty healthy & have slight CORDING from SLND. I am ready to do what's I have to do to rid my body and every cancer cell!

-Below are my questions/concerns. Any info/opinions/advice you girls could give is much appreciated!

1. WIll my chemo be changed due to the 1mm micromets?

2. If chemo doesn't change, will chemo (Taxol+Herceptin) be enough for the micromets or should I have ALND?

3. Should the low Her2 & grade 2 (was grade 1 on 2 biopsy results) have any affect on my decision to have ALND? I am worried I would experience more severe side effects. Although if that's what should be done I am ok in dealing with side effects.

4. It looks like I may have a possible decision to make on LNodes between wait & watch, ALND, or radiation to MX breast & I have no idea what to do!

I am having a difficult time finding anyone with a similar diagnosis!

Thank you so much girls! Your knowledge & sisterhood is invaluable

bareclaws

moody blues, please stay in touch about the platelet issue. What chemo are you getting? My first chemo infusion gave me acute ITP, and hematologist/oncologist suspects Herceptin, but no one knows for sure. I had several platelet infusions but they wouldn't keep the numbers up and finally had to have IVIG twice, then months of steroids.. Then had to switch chemo drugs and finally I am back to getting Herceptin, but as a weekly low dose instead of every three weeks.

ElaineTherese

TYE89,

I answered you on your other thread, but I wanted to welcome you to the Triple Positive thread!

I hope you have productive meetings with your oncologists this week.

wabals

Right on HapB

moodyblues

Bareclaws. .  Feeling much better two days out.  I go for labs Monday and they will check the platelets again and according to oncology nurse they will more than likely adjust the chemo.  The crazy thing is that I was out of breath and thought it was a normal side effect, I never thought it was my platelets being low.  Three more treatments of the TCH and then 6 treatments of Herceptin alone.  I cannot wait till this treatment is over!  Thanks for checking on me. 

Melanie

moodyblues

Bareclaws.    What is ITP?  Thanks 

bareclaws

moody blues, this explains it better than I can:

http://www.itpfoundation.org/itpdefined.htm

moodyblues

Thank you Bareclaws!

toughcookie_21

TYE- my diagnosis is very similar to yours. I am awaiting my final surgical pathology results this Wednesday when I also meet with the MO. I have been told several times over the past few weeks that my tumor is a head scratcher due to it being low grade but her2+. I was node negative out of my BMX. I'm anxious to hear their recommendations on Wednesday. I'll update once I know the next steps.

TYE89

Thank you Elaine!

Toughcookie - so glad to hear from someone with a similar diagnosis! I am still waiting to find out if I am Grade 1 or 2 post surgery. Do you know what your FISH ratio was? Mine was 2.0, the lowest value to be positive. It seems every characteristic of my cancer is head scratching except ER/PR 90%.

I will update after my Dr AppStore tomorrow & Tuesday.

Leslie2016

Hey everyone. This week is Herceptin #11 for me. Hitting the home stretch! Luckily I don't seem to have any major SE's from the herceptin or the tamoxifen. Except hot flashes...but they started when the chemo threw me into menopause.

Just a quick question for those gurus out there who know these things. I'm just curious...Hopefully I never have to find out, but if you have a recurrence, CAN they give you the same chemo? Or is it once you have had a certain type of chemo you can't do it again?

ElaineTherese

Leslie,

There's a life-time limit for Adriamycin, but not for the taxanes like Taxotere and Taxol. I've seen Stage IV patients do weekly Taxol on this board.

Congrats on coming to the finish line!

Leslie2016

Thanks Elaine. That's interesting. I wonder why some are once and done and others you can do again. Anyway...was just curiosity. Thanks for answering!

ElaineTherese

Leslie,

Adriamycin has a lifetime limit because of the potential of cardiotoxicity -- it can really be tough on the heart. As my old oncologist always says, "You only have one heart, so we wouldn't want to damage that."

FleurDeLis49

Hello, all!

I had my second surgical consult today and got the results from last week's MRI. Confirmed a single tumor (they described it as 15 mm x 6 mm - US had said 10 mm) with no other lesions in either breast & no evidence of lymph node involvement!

Next stop is lumpectomy on August 15th with sentinal node biopsy at that time. I haven't met with an oncologist yet, but I'm still hopeful of avoiding chemo. Obviously I'll do what I must, but radiation would be much easier to manage, especially since my husband works in another state. If he has to come home to take care of me, we'd have no income (or 60% if we both take FMLA) but a better support network; if I can get treatment there, he can still work (part in-office / part at-home), but he'd be the sole caregiver as we don't really know anyone there. From what I've reading, with rads only, I think I could manage mostly by myself here with our support network.

Has anyone else here had a similar situation, either in regards to work/support and/or in terms of getting treatment somewhere other than where you usually get care?

ElaineTherese

Hi Fleur!

It sounds like you've got a challenging situation there with DH being in another state. Another option is just to work through treatment. I worked during chemo, radiation, and the year of targeted therapy (Herceptin). That way, we didn't lose any income.

Frankly, my DH didn't help much anyways. He worked all day and late into the evening on my chemo/infusion days (Wednesdays). I had a friend help out at chemo, and friends brought dinner on Wednesday nights. The side effects would hit on Friday, and I had Saturday and Sunday to get in shape for another work week.

So, I would say having a support network was more important to me than DH's availability. I should also note that many women have had a more difficult time with treatment than me, and that everyone reacts differently.

Good luck with your lumpectomy! I found the ladies in the "Lumpectomy Lounge" to be very helpful.

FleurDeLis49

Elaine, thanks for the encouragement! I've never had any experience with BC or any other serious illness so I guess I'm planning for worst case re: treatment, SE, etc. and hoping for better!

HapB, I admire your strength in caring for yourself, as so often we women have to do! I am HER2+ as well as ER+/PR+.

debiann

Anyone else on AI's with dry mouth and eyes?  I know they dry out the lady parts, but I also have dry eyes and mouth.  MO is saying its not the AI's but just wanted to ask if anyone else has this.

ElaineTherese

Debiann,

I'm on Aromasin and have dry eyes. Dry mouth? Sort-of, but I'm not sure I can blame that solely on Aromasin. I'm on a three-drug cocktail for high blood pressure, and recently added Fosamax to my list of prescribed drugs. (I now have full-blown osteoporosis -- Thanks, Aromasin + Zoladex!) Fosamax can make your mouth feel dry and make swallowing more difficult.

In general, I feel like the Aromasin has dried me out. I've always had oily skin and hair, and now I don't.

Nice to hear from you Debiann!

FleurDeLis49

HapB, thanks for the recommendation on chemo Fridays! That would actually work out quite well - his schedule has him off every other Friday so that would reduce the impact by half!