TRIPLE POSITIVE GROUP
Comments
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chickad - You are right to have this checked out but know that reduced hemoglobin will make you short of breath and easily winded. Since you just finished chemo your hemoglobin is most likely at its lowest in the process. Most of us noticed an increase in energy at about the 6-8 week point PFC. Ask for a CBC to be done so they can look at your Hgb level.
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Not sure if anyone posted this..
I wish I had gotten it!!!!!!!
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Cgesq
Looks like it's coming soon. Good to know it's out there just in case.0 -
Thanks Miss SpecialK....I looked at my cbc from last week BEFORE chemo and hgb level was very low...and that was before I got the chemo...
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ChickD,
Your tumor is small and zero nodes & mastectomy. I thought when your tumor less than 5 cm, zero nodes or mastectomy you don't need radiation. I am confused! Thanks!0 -
soriya - sometimes you still need radiation even if you have a mastectomy, despite negative nodes, if the tumor is too close to skin or chest wall.
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Ok thank you specialk!
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Very close to my chest wall!
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Ashla , I have pre existing arrhythmia that I take a beta blocker for .
I did AC q2wks n will be doing the herceptin every three wks when done with taxol.0 -
Yes, I too had to have radiation post BMX despite negative nodes due to close margins, both at the chest wall and near the skin.
I also had TCHX4 for a 3 mm HER2+ tumor. But tx for less than 5 millimeters is not the NCCN standard. MD Anderson recommended chemo for me b/c I am younger, based upon their retrospective studies. I went the aggressive route. Many choose not to.
If you are > 5 mm HER2+ IDC the advisement is always chemo with Herceptin.
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@momx
My wife just completed her 2nd weekly taxol. Other than being tired after, she's been doing her usual routine, work, gym. She even made me dinner a few times, I'm usually the cook 4-5 days a week.
Next week they add herceptin, curious to see how it goes with you. Wishing u all the best.
My advice is to get to chemo day early @ Columbia pres, thus way they get blood work going. We had an empty room this week when we steered, got a nice view.0 -
Art123 , glad to hear your wife is doing well.
I'll keep you posted on how it goes for me .
Thank you !0 -
Art123 & momx2
Sorry you guys need to go there but nice that you can share your experience @ Columbia Presbyterian in real time. That's a first since I've been here.
Great Art that your wife is doing well.0 -
Arlene, I had macrocytosis all through chemo. After Christmas, a substitute NP came into my chemo room and lectured me about my super-high mean corpuscular volumes (MCV). My buddy John was there (he's a nurse) and he joked that it had to be the wine, so she assumed my issue was caused by drinking my holidays away. It wasn't--my MCV is normal now. But I did start taking B12 and folate regularly. Macrocytosis is almost always caused by chronic drinking and/or being B12 or folate deficient. There are other causes, but I haven't heard of liver cancer being one.
BTW, to take vitamin B12, I use a sublingual pill. The vitamin needs a protective protein called intrinsic factor to bind it and take it through the acidic stomach environment. As we get older, we make less intrinsic factor so we absorb less intact vitamin B12. Taking it under the tongue or as a shot gets it directly into the blood stream. I take it because I'm not much of a meat eater and it is found in animal products mostly.
Chicka, I was extremely short of breath after about my 6th taxol/herceptin treatment. Turns out I had a hemoglobin of 6. They just pumped me full of one unit of packed red blood cells and I was good to go. I felt like wonder woman!
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PBrain: Thank you SO much for the information. She is quite the wine drinker and not just holidays so that's probably it. She didn't stop during chemo either so I'm guessing you are right on. Thank you!
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Arlene, she sounds like me ;-) No one said "don't drink during chemo" to me, so I just went ahead and did it. It probably did contribute to my macrocytosis, but a day without wine is like a day without sunshine!
MomX2, this board helped while I did my weekly taxols:
http://community.breastcancer.org/forum/69/topic/788735?page=61#idx_1801
You might be just fine. I struggled, but that's just me. It was way better than TCH though, way better! Food still tasted ok, I took the anti-emetics every day, got really anemic but I got through it. Watch out for neuropathy though, it sneaks up on you. It will start as little tingles in your hands or feet. Tell your oncologist because they don't want to cause something that doesn't go away. Mine was pretty bad by the end and it has gone away after ~6 months. Take vitamin B6 for it. It is water soluble, so what you don't need you just pee out.
Keep us posted!
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I have another question for you ladies... I saw a radiation oncologist this week and he said I absolutely will not need radiation. I was very surprised since I swear my surgeon told me that if I had ANY cancer in my lymph nodes ( I had less than 3 mm in my sentinol node) I would have to have radiation. I'm going for a second opinion on Monday. But did everyone who had a mastectomy and lymph node involvement get radiation??? I ended up getting 25 nodes removed and only the sentinol node had cancer.
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Miss Marisa...I had no node involvement and i
am scheduled for radiation next month
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PBrain I could have sworn that there is micro and macro having something to do with red blood cells--and just assumed micro meant smaller measured--but remember this is me thinking not someone who knows.
Art I'm glad u'r wife is reacting well to all of this some do so hoping this continues.
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marisa - I had a positive sentinel and a much larger positive node. I had ALND and did not have rads. I asked my BS and MO twice each, they said not necessary for me. I just went to my annual BS appt. in June and had a different doc - I asked him too since he was a fresh face - he agreed with the BS and MO. Have you had a rads consult?
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How hopeful for us Her2 gals! Dr Sledge's Speech at ASCO today:
http://www.ascopost.com/ViewNews.aspx?nid=85280 -
Geewhiz...
I'm still not quite sure what he means on Her2 pos. Gonna print that out and ask my MO next month. Defiitely optimistic though!0 -
Ashla - Im keeping my fingers and toes crossed that he is referencing a Her2 diagnosis as highly treatable. Those percentages with Kadycla and Perjeta look great.
He rains on my parade a bit later by saying that estrogen positives recurring later are possibly a result of dormant micromets and remain an area of study concern. We need more studies of stem cells!!
Let us know your onc's take on it! I see mine in 3 weeks for my 4 year checkup.0 -
Marisa, I had a positive node removed last fall (at least 2 others showed up on the PET and MRI) then I did chemo and had ALND. I did not have radiation by choice. RO said I should, BS said it was not necessary. In the end I went with my gut and declined to do rads.
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And for another "GEEWHIZ" moment in my life....
I just got an MRI back today showing a torn MCL and a completely torn meniscus in my knee. I am supposed to be playing in the state finals. So disappointed. I still don't even have nipple recon done and at the rate my PS schedules, it won't happen anytime soon. I just want it ALL finished!!0 -
Geewhiz...
State finals. in what? Can you say? Seems there 's always another issue . Just trying to keep a positive thing going in between issues.0 -
Cami, you are 100% correct. So never doubt your brainy-ness!
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PBrain I'm actually right on something--Holy Chit I don't know why I knew that it must have happened to someone??? LOL
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Ashla- tennis. Lots of tennis.
It keeps me as sane as Im going to be : )0 -
Pbrain: Thank you so much. I sent my friend your information and she's ecstatic. She pretty much thought she was a gonner and I kept telling her to stay positive. Thank you again!
Ashla: It will be great to see all the new information that comes out re: Her-2+
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