TRIPLE POSITIVE GROUP
Comments
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Thank you lago - I will!
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Kay, thanks for caring. For whatever reason I am super sensitive to toxicity of drugs. I'm reluctant to do the fourth Herceptin next Monday. After going on three weeks since last infusion, I'm just beginning to have a little of my old energy back. My oncologist wants me to do it with a followup of another echocardiogramn. I am pretty sure my EF will below 50. I just hope it's not too dangerously low. My oncologist said she will take me off it for awhile (it is already at 50) to see if my heart bounces back and if it doesn't she won't put me back on it.
I won't be taking tamoxifen due to heart and stroke risk. I've tried two drugs so far and both have done a number on me so I'm not thrilled about putting my body through more torture
' I also can tell my immunity is low as I'm again fighting mouth sores and swollen glands. I read about Tykerb and it too is hard on your heart.
I just pray that I had enough Herceptin. I know it stays in your system for awhile after conclusion of therapy. If not, I'll deal with it IF I am ever dx again with cancer. For now, I'm so ready to just feel better and get on with life.
Although last night or this morning I had a dream I was in my daughters car and I became very ill, spitting up blood. I went into a restuarant to eat and this guy, who is a nurse at the hospital said I needed to go to the hospital because I was dying. Not a good thought to wake up to.
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Thinking of you evebarry - They did get good results with the FinHer Trial where the participants got herceptin for 9 weeks.0
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evebarry - there is a clinical trial going on right now where they are putting patients on ace inhibitors to try to prevent heart damage. Perhaps this is something you would want to ask your onc about prior to your next infusion? Just thought it might give you more confidence going foward.
http://clinicaltrials.gov/ct2/show/NCT01009918?term=her2+AND+ace+inhibitor&rank=2
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Great discussion! I didn't know about the relation of low vitamin D AND BC. I spend a LOT of Time in the sun so was very surprised to have a low D level at my physical in December. I started 1,000 mg at my Dr's recommendation in January...just 1 month before I discovered the lump!
Dance, I too knew better and was too lazy or forgetful to take calcium supps.......but now I do! 600mg (w/400 of D) and a multi with 500 mg calcium and 1000 D.... And an additional 1,000 D!
So I've replaced all my HRT pills with vitamins and Prozac! Lol
It will be interesting to find out how my D level improves!0 -
((((evebarry)))))). Hugs! FYI some medications produce " abnormal" dreams" , like antidepressants.
God bless you!0 -
The last 4 mornings I've awoke to numb arms....when I did some dispatch/911 work in Texas I had to type over 90wpm for 8-10 hours a day....most of the people I worked with had carpal tunnel...my arms ached and went to sleep JUST LIKE THEY'RE DOING NOW!!
Hope this passes. I can't stand the feeling.
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Wow, another EXCELLENT article just came into my inbox.
Adverse Effects Hinder Extended Aromatase Inhibitor Therapy
First of all, the article certainly validates the side effects women report with endocrine therapy.
Secondly, it shows that those who do the combined tamox w/letrozole (specifically, not just any AI) for 5 years were more likely to tolerate the additional 5 years of letrozole. Oh and if you didn't have a delay between the two you were more likely to be compliant overall.
One thing is it doesn't have an explanation for the compliance being better in these situations. Is it b/c with this combo you end up with fewer side effects? Or are there other factors? Interesting, none-the-less, and makes me more inclined to follow the tamox/letrozole path if I can.
The other thing it said is the jury is still out on whether or not that 2nd 5 years of an AI is helpful or not. Waiting for data to come back from trials before definitive recommendations can be made.
This was a really helpful article for me to read, being a newbie on this stuff and not having started Tamox yet.
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Oh no Ton Lee! Is the entire arm or just the hands??? Splinting at night can help prevent carpal tunnel in a big way.
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TonLee - I had numb hand last night too.0
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Oh no what's with the numb hands. I did have a numb thumb in the morning for a while but haven't had that in months. I hope it goes away for you guys.
DanceT they are very aware that many women don't finish AIs because of SE. My NP even discussed this last time I saw her. I did ask if my SE would get any worse. She said no. It's been a little over a year.
BTW the last time I read about more than 5 years on AIs it specified that luminal A benefited but luminal B didn't. It's an older smaller study. I got the feeling that more luminal B's reoccurred before 5 years and that's maybe why. I can't find the article but I think this is the study: linky and this from Dr. Love's site: linky
You will find overtime that what is said one week might change the next. So many studies, some biased and flawed, some too small etc. That's why I always say review with your onc.
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lago - I have no idea! Didn't get it before, I don't know, maybe it's chemopause lack of estrogen? Maybe the phase of the moon.0
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chachamom, I don't take anti-depressants. The dream is problably cause by bc fears of recurrence. I'm sure the longer I am NED those fears will subside. It might also come from the comment my oncologist said that any unusual pains will be scanned. It's the idea in the back of my mind that they are suspect of any new pain being cancer. You would hope once surgery and treatment are done that cancer is behind you and you can move on...I'm learning it never will be gone if I'm looking at every new pain or strange physical problems as probable cancer, which can be why we dream about dying...because it's in the back of our brain that this disease could take our life. To add ... most of my dreams although I rarely recall my dreams anymore, are good ones. I rebuke the bad ones and keep the good ones.
I'll ask my oncologist about the Ace prohibitor, but, I'm so ready to be done with herceptin. It is a lot harsher treatment than I initially thought.
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Im the middle of the road girl, I think! My path was 40% er, 14% pr and ki-67 said 15, intermediate. However, on my first biopsy, when they only found lcis, that was 80% er.
Eve, my blood pressure wenr up just enough to require treatment when diagnosed. My doc put me on a low dose of metoprolol. I think it is a beta blocker. He said he read that they were doing studies using beta blockers to help protect the heart from chemo and since I needed something, it might as well be that and maybe it would do double duty. He did say the dose was probably too small to help a lot, but couldnt hurt.
My lvef dropped to 50-55 at its lowest. It was back to 60-65 in June. If you are at 50, you are still considered normal, just low normal.0 -
Lago, guess it depends which study your onc looks at and believes in. LOL. I know it's all a crap shoot for a lot of this stuff that the jury is still out on.
Oh - I discovered that if you are on any acid reduction drugs you may be better off with calcium citrate vs carbonate. Here's a pretty good primer on Calcium for anyone who is interested.
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I do eat yogurt and lots of leafy greens but I guess I needed the extra Calcium because I didn't get much bone loss 5 months after starting ESD and after chemo (chemopause). I'll find out this fall how I'm doing. Getting another bone density then.
I do trust my onc. She goes to all the conferences so I know she's up on the latest.
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Evebarry....wishing you sweet dreams tonight!
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hi all
haven't been on in awhile...catching up on all the info
some interesting reads...especially the article on the 10 subtypes of bc
i have had 2 appt with PS about my upcoming surgery in august, seems i will have to do the flap procedure on the radiated side
i REALLY dont want this, a scar on my back is not pretty but apparently i can't use alloderm either. has anyone had the flap procedure...how does the scar look?
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Thanks Kay...I may try it if it doesn't get better....
Ok...my arms are both numb from the elbows down to the fingertips...you know that heavy tingly feeling right before they go totally numb? It started with sore elbows...now my elbows aren't sore but I have the heavy numb arms in the morning.
I will give it a couple weeks...if it doesn't work out, I will try the arm splints....
I'm going to read that article next Dance....thanks
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Hmm TonLee - my symptoms at night resolve pretty quick. If yours are continuing maybe you should call the doctor. I am not sure, but I don't *think* the elbow is involved in carpal tunnel, but someone else should know more about that than me. I thought it was just from the wrist down into the hand.0
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Ton Lee, Omaz is correct. Carpal tunnel syndrome affects the hands, typically the thumb and first two fingers. Symptoms above the wrist would be coming from nerve compression up higher - most likely at the shoulder or neck...if it is on both sides, neck issues are most suspect...as Omaz said, maybe see your doc for evaluation. If you are having any weakness, it's important to get in as soon as possible.0
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My chiopractor says that hand, wrist and arm pain can be caused by the shoulder or neck. My daughter especially struggles with it. One specialist said to her it was caused by deferred pain from her neck. Another said it was a too tiny wrist. One way to know if it is carpal tunnal or tendonitis is to first treat the tendonitis with a splint. I had tendinitis so bad in an elbow. I had a splint put on it for 10 days. Totally disappeared. The same thing for the thumb. Another way is a choritizone relieves tendenistis but not so much carpal tunnal. Carpal tunnel is inflammation in the wrist area as I understand builds up scar tissue which puts pressure on your nerves
There are also tests that can be done to determine if the pain is carpal tunnal or tendonistis.
I have had a few frozen shoulders in the past that effected my whole arm. This is also something to consider especially if it hurts to lift your arm. Cortizone shots and massage ...and swimming have helped me to keep these past problems at bay. I haven't swam in awhile due to surgery and reconstruction. I feel bone pain in my upper right arm that is problably due to the recent surgeries. I need to get back to the pool
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Ton Lee, vitamin B12 deficiency results in numb/tingling arms and legs. As a Pegan (fish-eating vegan!) I take a B12 supplement and the tingling in my arms comes back if I forget.
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Thanks...you guys are such a source of great info!!
So let me ask this....does anyone here take milk thistle? It is supposed to be great for the liver...and I figure after chemo ...
But I take a lot of supplements.
Magnesium Citrate
Fish oil
Vit A
Vit E
Vit C
Calcium
D3
Biotin
L-Carn.
Sea Weed (Iodine)
Multi
Joint pill (those big horse ones...lol)
Meds (Femara, thyroid, Niaspan, Claritin)
I also occasionally take other things when I remember....but I track my nutrition at fitday.com (free!) and it shows a daily thiamine, vit A, vit E, deficit before my multi...I take SO many supplements...I hate to add another one.
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About the Carpal....the women I worked with had scars from the elbow down into the palms of their hands.....and it was all classified CT. But maybe that was an Insurance thing...I dunno.
This could easily be from the neck. I've started lifting heavier in an effort to counter act bone loss from Femara (I'll let you know how that goes for me at my next bone scan in a year!)
Also the women in my family tend to get that neck hump thing from degenerated discs in the neck....we carry all our tension there....when I am tense and a massage therapist touches it...I get really nauseous. Botox in the back of the neck is a miracle cure for tense neck muscle pain....but when it wears off....OUCH!
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Not taking B6 are you TonLee? If you take too much of it, it can cause neuropathy (yet if the right amount, it can help prevent it during chemo). From what I've read the neuropathy from it is reversible once you stop it. I was getting increased tingling at 100 mg (which is supposed to be safe), and when I backed down to 50 mg the tingling stopped...
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DT,
No I stopped B6 about 6 months after chemo...wanted to make sure I gave it enough time to repair any nerve damage....but even then it was only 50mg a day. (When I remembered!)
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Here's my list:
DRUGS
• Start 3.1.2011 Anastrozole 1mg
SUPPLIMENTS
• calcium 1200
• Vitamin D 400 IU (included in calcium)
• Vitamin D3 1000 IU
• Acety-L-Carnitine 500 mg
• Vita-Acidophilus 1.5 billion cells
• Biotin 5 mg
• Multivitamin/Multimineral Centrum
• Rogaine 2% (1x a day)
I probably should be taking fish oil too. My gyn from 5 years ago told me to start taking it.
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That's crazy about the "carpal" scars Ton Lee. They must have had something additional going on, b/c the only carpal tunnel release scars I've ever seen were on the palm of the hand/anterior wrist (over the area where it becomes bound and restricted). Of course, I'm not a hand specialist...they may have had compression of the median nerve higher in the forearm, too...but it's not nearly as common in my experience.
Watch that neck girl! Fingers crossed that this improves for you spontaneously if you back off on the weight.
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The only caution I'd throw out there about milk thistle (I'm WAY far removed from being an expert, though), is that I read it may have estrogen-like properties...would be worth further research before jumping in.
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