TRIPLE POSITIVE GROUP
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I meant to mention the same regarding the drains - I had no problem with any discomfort when they were removed and I had two on each side for quite some time and then another one placed on the right side after a second surgery to remove Alloderm that didn't "take."
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New Jersey...lago and SpecialK....am very interested in knowing if you had preapproval for breasted MRI. My first potential surgeon ordered one...and now insurance company wants to deny payment. It's being resubmitted...and I have my fingers crossed. Any pointers or good buzz words I can use in a letter to insurance company?? Hospital said they got approval and knew exact amount for me to pay...I'm stumped.
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I guess I'm lucky then, I have two drains. One on each side! I'm having very little draining, like less than 10 cc on each side. I hope tgis is a good thing! So, I've heard both now they do/dont hurt coming out. It really doesn't matter though, they are coming out one way or the other!
Thanks ladies!0 -
Barber,
Sounds like they are ready to come out! It's just one more step in the putting-this-behind-you journey!
For the ladies in active chemo right now...how are you all feeling?
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rivercottagegal after my diagnostic mammo/US it was recommened I have both a biopsy and an MRI. I was told they did the biopsy first because that was the only way the insurance would approve it (according to my BS' nurse). I'm not so sure that was true. Also, I do have dense breast tissue so that might have helped the cause. I know in CT that if you have dense breast tissue you can get an MRI instead of just a mammo. But my BS did an MRI on both breasts. Good thing he did because he found LCIS in the "good" breast. They would have never seen that otherwise. That's when my BS recommended the BMX.
barberchic I only had 2 drains for a week.
Tonlee I have another recipe you might like. Haven't tried it but it sounds good and I don't even like whipped cream (but love coconut): Coconut Whipped Cream
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TonLee,
You mentioned you take prescription Niacin, and I read this article today re: Niacin from www.consumerlab.com, so I thought some of its contents might be of interest to you:
"The adult upper limit for niacin (B3) is 35 mg/day. Doses much higher than the upper limit are used medically to improve cholesterol levels; however, high doses of niacin can cause liver inflammation. It should also be noted that various forms of niacin vary regarding their use and side effects:
NICOTINIC ACID: in high doses, it lowers cholesterol levels but can cause flushing of the skin;
NIANINAMIDE: improves cholesterol levels with no flushing of the skin."
Shasha10, thinking of you today as you undergo Treatment No., 2. You have learned a lot from Round #1, and I hope Round #2 is easier for your mind, body and spirit.
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Thanks Lago! I love coconut! That looks yuuuuuumy.
Gratitude,
Thanks for the info. I've read about the SEs before, but compared to the SE of Lipitor and other cholesterol lowering drugs....Niacin is a walk in the park. Since my cholesterol is hereditary and not diet ... I don't really have a lot of options.
Also I think the liver issue is a problem with the extended release one.. I don't take that one.
Since B vitamins are water soluble, I just make sure I drink plenty every day:)
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Re: active chemo group
As of Saturday I started feeling more like myself again following round four. The side effects started sooner and lasted longer. I had fluids this past Wednesday but not really because of nausea but because I was just feeling rundown/crappy. Finally, on Saturday morning - which was day eleven, I woke up feeling a bit more human. My hemoglobin is 9.3 which might account for some of the fatigue.
If they could all be like round three I would be one pretty happy camper.
(And thanks for asking, TonLee)
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LeeA,
TWO MORE!! You're over half way
That's awesome!For some reason the 4th tx was the hardest for me. I remember going into #5 thinking...I'm not fully recovered from #4! But #5 wasn't as bad.
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Lee, my Hbg went down to 7 during my chemo. I was sure my shortness of breath was due to cardiac dysfunction from the Herceptin. Around chemo 9, I got a unit of packed RBCs and I felt like a different person! And my MUGA scan showed a perfectly happy heart.
It is really hard to believe how crappy you can feel without a lot of red blood cells!!
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Yes, Tonlee, thanks for asking. My TCH #6 is coming up Friday. Like Lee, my SEs have lasted longer each time. The week after, I spent most of Monday through Wednesday on the couch. I'd say I started feeling almost normal by two weeks after, with the return of tastebud function. My blood counts have been good with the Neulasta, but the NP did call in a potassium supplement for me.
Although I am not exercising, my weight has bounced up and down, but hasn't gotten above where I started. I'm so proud of you girls who are dedicated to your workouts. You are inspiring me to get on the ball! Or at least to think about getting on the ball.
Martha0 -
Martha,
I am so happy for you!! That you're almost done!! WOOT WOOT!!
#6 was harder on me mentally because I thought...well now I'm done, time to feel better!! I hated every second of SEs after that one...lol.
The weight is tricky. I think you'll be surprised how much of it is fluid that dissipates over the next several weeks (well after #6).
We all do what we can. My best to you for this upcoming tx Martha
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So according to this study, it appears that Herceptin allows Her2+ women to live longer without cancer, but when it comes back it seems to have an increased risk of coming back in the brain (CNS) with women who have Herceptin. I haven't had time to read it all....has anyone else heard this?! Is this new?? (Edited, yes it is new...I guess March 4th? Anyone else been reading this on your BC sites?)
http://annonc.oxfordjournals.org/content/early/2013/03/04/annonc.mdt036.abstract
Conclusion: "Adjuvant trastuzumab is associated with a significant increased risk of CNS metastases as the site of first recurrence in HER2-positive breast cancer patients."
Ann Oncol (2013) doi: 10.1093/annonc/mdt036 First published online: March 4, 20130 -
TonLee yes I have heard this for years (well a couple of years). The theory is that Herceptin works so well that does get all the stray cancer, except that in the brain because as we know Herceptin doesn't cross the blood/brain barrier.
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According to several articles I 've seen, this new study confirms previous thinking over the past decade. Apparently herceptin molecules are too large to pass the blood brain barrier. My BS told me about it last year.
http://www.medscape.com/viewarticle/7808020 -
Thanks ladies. I was a little surprised to see it. Makes sense though.
I don't remember hearing it...but I've probably just forgotten.0 -
Yes my doctor told me about that months ago, It scares the crap out of me But I try not to think of recurrence.
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Ang this shouldn't be perceived as a bad thing. It means that Herceptin does work!
It doesn't mean that if the cancer can't spread to other parts of your body it will automatically go to your brain… it means that those unfortunate subset of HER2+ who have spread to the brain need something other than Herceptin (like Tykerb) that can cross that barrier battle it.0 -
Powermom - I did not exercise during my TCH....but I did walk around my house...it helped with the bone pain. I started serious walking about 6 weeks after my last TCH, but only 30 mins...slow slow. It will come...movement is SO good so try to do a couple laps around your house when you can and I seriously think you'll see improvement. Woo hoo on coming up 6th tx...I was on couch or in bed for a week by that time. Jes kicked my butt a little more/longer after each tx.
LeeA - yes it was rough time,,,and that is exactly why I thot he 'was meant' to come into our lives. I can relate to your se's. Would love to say rnd 5 and 6 will b like rnd 3...sorry, but usually not.
Rivercottage - I had biopsy and after that...MRI, PET, CT, BONE...all approved with no problems. Good Luck...I can't believe how some insurances treat us...pisses me off!
Lago - I to with the dense tissue. And I have not heard of Paget's, but my tumor started very close to my nipple too. But I guess I didn't have that?
Pbrain - mine RBC did same thing...they were threatening transfusion/infusion, I dunno. I live 80 miles from my docs/tx center...so I had to go everyday to local hosp for blood draw...it went up on it's own...go figure!!
To all of you...sorry if I missed anyone...but kno you are all still in my prayers!!
Sue
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Thanks for asking about those of us still in treatment TonLee. I had my last TC last week and even though my MO reduced my dosage by 25% I think some my SE's are worse that ever. My thighs are more sore than they have ever been and the eye tearing has gotten worse. My WBC, RBC and HGB were a little higher than they they have been, but I sure can't seem to get any energy back. Plus I have a new SE - the bottoms of my feet are so tender it is painful to walk. I know I need to be patient but now that the chemo is done I am just want to feel better. Like now
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Bren I had the burning bottoms of the feet starting with the 1st or 2nd treatment when I would walk for long periods. It would resolve by next chemo. Its that damn nueropathy. The teary eye thing got so bad that I couldn't read. I would walk down the street with tears running down my cheeks. My thighs were so stiff I never thought I would feel normal again… but at week 5 all of a sudden my thighs started to feel better. Trust me these things will improve.
But as I mentioned before everyone is "yay chemo is over" but it isn't because you are still experiencing the cycle and cumulative SE. 2 weeks PFC I "celebrated" myf 50th birthday (actually 49+1 birthday). It sucked. I felt like shit. I still had digestive issues and bloated so I didn't even enjoy dinner.
So remind us in 5 weeks when you start to feel better. That's when the happy dancing can start. ♥
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Bren,
My thighs seemed to hurt longer than anyone else on the board at that time. It was about 6 weeks PFC that I got any relief, and it wasn't a lot. I remember it was one of the worst SEs. I thought maybe mine was a little worse because of the heart damage from herceptin...but maybe not.
If you can tolerate it...get a massage and have him/her spend a majority of the hour on your legs....just have them go in upward strokes. I can't tell you how much that helped me, and frankly still does. My thighs still retain fluid because of the heart thing.
Fortunately spring is just around the corner for us, so you will be able to get outside and move a little bit. Don't rush it. Let your body recover. It just took a serious beat down. Baby steps!
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Thanks lago. I look forward to the happy dancing, everything is too painful to dance right now.
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JLynn,
It's been about 10 days since your first TCH...how are you doing???
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Catching up again.
Bren - I so remember the horrible pain in my thighs too. I can't even remember when it went away but it wasn't quick enough. Darn taxotere has so many SE's. Watery eyes, I still get them and drippy nose too and goodness June 6th will be 2 years for me.
On a positive note, I did the Sarasota Half Marathon yesterday so ladies there is hope! It takes a while and I'm far from back because my body is still feeling all the effects of those treatments but it does get better.
Arlene
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Bren give yourself time to heal. It's done am s very personal schedule, no one else us the same. If it takes you longer, you'll still get there, just a slight detour.
To those still in tx, hang in there. You are stronger than you know.
I had to have two transfusions during tx. I felt so much better after each one. I wasn't expecting that to happen. Just like I wasn't teal happy to find out I needed another magnesium IV when I went in this week for a blood draw. But it explained why I fell asleep the minute I sat down. I tried to eat more magnesium heavy food, but it didn't help. Oh well. I suppose I should just get used to getting them every now and then. LOL. Much love to all.0 -
Moon,
I'm glad you're getting what you need Magnesium wise. I've read transfusions can really be helpful in the feeling better department.
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Leea My Blood was low 10.1 and I had gone back to eating meat, so food doesn't make a difference for me.
My Dr said just to continue meat until the chemo is over. Just was invited to a Bar Mitzvah in May. I'll have to wear the wig... Maybe do the halo with a pretty hat though. Will see.
Just did round 2 yesterday of TCH going in for Neulasta today. Hope I don't end up the er again. ready with my pain killers this time
Good luck to everyone
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Anyone know how long Herceptin is in your system? I'm finished and was just curious.
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Shasha the only weekend I work my wig was my nieces Bat Mitzvah. It was either just before or after tx4. No one noticed. I did go to a wedding the following May but I was topless by then… but it was barely 30 degrees and windy. I could have used the wig. It was freeezing.
Maybe you need to eat some salmon and spinach too.
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