TRIPLE POSITIVE GROUP
Comments
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To the mom of the daughter too, First I am so sorry you are having to go through this. I too am 38 and just was disagnosed in Jan. The hardest thing I think I had to do was tell my mom. It's just been her and I growing up. While my mom has been supportive and overly helpful one of the hardest thing was to deal with her emotions and mine as well. At times I feel like I have to be the strong one for us both.
The best thing she could do is listen, be there when I ask and offer her opinion when I ask. But it is my body and my decision that I have to live with. I too had the choice and I have decided to have both. My step mom doesnt understand, and even thinks I should postpone my surgery so I can enjoy a vacation before. She has no idea what its like for me to be "sleeping with the enemy" every night plus with 2 young kids I want to do every single thing to help me live a long and happy life!
If she will let you, go with her to the appts as a silent observer. I am lucky to have my husband go with me as what he hears and remembers is sometimes different than I do. That alone can be a big help to her when making these decisions. So many dr.s and so much information! Let her know you love her and support her without smothering. It sounds like you will do the best for her and I wish you both the very best as we make this journey together
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Fluff I agree the food at the purple pig was awesome. Hmmm I'm meeting a friend for lunch this Friday. Seriously I need to bring my husband there.
Next time you're in we'll flash. You might have more to show. Glad you liked Uno's.
So glad we met up. I had fun. Too funny about DH but actually I do believe him. The cabbies here are on autopilot. They see tourist they are going to think Watertower not State St. You don't know how many cabbies want to drive through the park to bring me home! (Hello I live here. I don't need the scenic view. Take Lincoln Park West not Stockton Dr.)
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Fluff and Lago, glad you had fun. Love the DH story.
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Hey triple positives,is anyone on lapatinib/Tykerb and suffering from a rash?
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Jen...my husband was a huge help at appointments also, but surprisingly, he said he would back any decision I made. One idea, take an inexpensive tape recorder with you to the appointments. It helped us immensely to go back and listen. I was always amazed at how much I missed.
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I tape my appts, too. This is especially helpful when my husband is unable to come due to work. And I also am amazed by how much I missed when I relisten to the tapes.
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Omaz and lago, my Onc put me on a daily dose of low-dosage aspirin for my heart. I then put my husband on it as well!
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nwartlady - I had this conversation with my MO last appt - they definitely want a low-dose aspirin daily. I had not started it because I was just about to have my exchange surgery, and could not take aspirin. Now that I am past that I will be starting. My DH has been taking it for several years now. He has cardiac issues on both sides of his family but his doc says his cardiac health is stellar - used the word "teflon" in describing his vascular system. Total cholesterol is like 150 - low BP, low resting heart rate. Me, on the other hand, low BP but bad cholesterol (genetic) so I get to take Lipitor too.
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I used o take a low dose religiously, then got away from it. I think I will start back up again. It ought to go well with the metformin I am taking. lol.
I sarted effexor today, after weaning myself off pristiq in January. I decided it wasn't helping hot flashes and I didn't need it any more for the panic disorder I had when first diagnosed. Well, for the last month, my hot flashes have been worse than terrible, literally making me feel sick. I told the ONC, and he said I told you to keep taking it...what are you having three or four a day? Seriously? Try three or four an hour. When I gave him the look and said that, he said, Oh goodness that's a lot. So I told him I wanted to try effexor as it has a generic and is much cheaper and if I am going to take something that doesn't work, it might as well be a reasonable cost.
So far today, my hot flashes have been really mild, more like a flush. If that keeps up, it will be worth it.
SpecialK...I am submitting the study information to Wake Forest. My ONC went to a conference in Miami last week that was on vaccine trials I believe, or a big component of it was. He thinks there are great things happening. The drive is virtually the same time, very little difference. Flight costs are pretty similar if I do that, however, the hotel room costs are hugely different. He said even if all I got was the gsm stuff, it would be good. So, I think I will give it a shot...get it? Bahahaha!0 -
Hi Everyone-- I have a question.....are any of you getting Zometa? At my Herceptin tx and MO appt. last week, my MO is going to check with my insurance company to see if they would cover it. Apparently the jury is still out about it helping with recurrance in the bone for early stagers but my MO seems to think that it was a good idea.
If anyone has any input, I would greatly appreciate it
Happy Saturday everyone!!!
fluff and lago-- sounds like a great time you both had!!!!
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bucky - I am not getting Zometa but I am getting Prolia. I was osteopenic prior to treatment and that has worsened after chemo and 6 months of Femara. My insurance will pay because it is both treating and preventing. If I get a possible benefit of bone met prevention all the better.
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Thanks hillck and specialk
I did have a bone density done shortly after I started Anastrozole which showed very mild osteopenia in my lumbosacral spine. So.....that probably means that my insurance company will not cover it. Damn!!!! My MO who "poo-poos" alot of things ie...CT and Pet Scans, the diabetic drug (can't remember the name of it, lol) Damn!!.... still have chemo brain
, was eager for me to get this. It costs roughly $1000.00 per tx. Why do these drugs have to be so EXPENSIVE???!!!Special K Is the cost of the Prolia the same?
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Bucky my onc was orginally going to put me on it but that year the study said it wasn't effective on perimenopausal women so we changed course. Now a year later is says that it is. She was going to use the excuse that I was slightly osteopenic, family history of osteoporosis etc. To be honest I'm not so sure I was all that excited to go on it. Bisphosphonates have SE too.0
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bucky - I believe Prolia is a little less. My MO's financial person had not yet received notice of whether or not insurance would pay for the injection (it is sub cutaneous, like Neulasta) but had me sign a form that was submitted to the manufacturer. It replaces their resident dose if my insurance does not cover. I have not heard anything from my insurer, or the MO office, so I assume it was covered. Because I had provable progression I would be surprised if they did not cover it. Prolia is actually not a bisphosphanate, it is a human monoclonal antibody, as Herceptin is. It is relatively newly approved drug and my MO likes it as it is preventive and treating. I will receive it every 6 months. It does have similar SE to bisphosphanates, but I experienced no flu-like symptoms or aching. I was davised not to have invasive dental work done until 3-4 months after the injection. Most of the people who have had jaw necrosis issues were predisposed due to dental compromise.
P.S. the diabetic drug is Metformin.
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hillck they all can cause bones to become brittle/break if you are on them too long. I know if I end up going on any of these I will want a break after 5 years.0
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Hi Everyone,
New member to the group. My Lumpectomy is scheduled for April 3rd and I will find out my Staging and treatment after that. Just wanted to say hello and introduce myself.
Lori
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Welcome Lori, glad you found us!0
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Welcome Lori! Good luck with the lumpectomy. Mine went pretty smoothly and without too much discomfort - I hope yours does too.
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it is hard to know what to take. With the kidney stone followup that I just had, the doc said to go easy on calcium as that can contribute. But, based on age and lack of estrogen PCP advised taking it. After I told him about the kidney recommendation, he said I am between a rock and a hard place. That is helpful. lol
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Hello Lori, the waiting is the hardest. Welcome
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Between a rock and a hard place is right - here take this medicine that causes bone loss but stops your ER+ cancer from being fed, and then here is another medicine that fixes your bone loss but may screw up your bones! Awesome!
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Special K Thanks for the memory refresher
( Metformin) lol!!! I will ask my MO about the Prolia. The Zometa is given in an IV twice a year....the Prolia sounds better....since it is by injection. I have been taking 2,000 of Vit D daily and only a daily multi vitamin with a little calcium in it. My chemo nurse gave me a little booklet of info on the Zometa and told me to "bone" up (lol!!) and start taking Calcium 500 mg daily. She very simply told me that Zometa sucks up calcium from your bloodstream to help strengthen your bones. I read about all the numerous side effects... ugh.... and the only one I like is "decreased weight" still have a few pounds to lose.
It is so true about our meds!!
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Welcome Lori!!!
Lago did you start it yet? or are you still on the fence?
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Forgot to add I have the initial bone loss from the hyst/ooph 10 years ago that also caused my cholesterol to go up so I have to take Lipitor for that! Argghhh! Feel like I am chasing my own tail! I don't really have a tail - they would probably prescribe something for that too!
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lori, welcome! (i'm not triple positive, but i love the women here!) let us know what you find out about your pathology after your lumpectomy. for me, my lumpectomy was a piece of cake. i was prescribed 30 pain pills and i only took one, but that was at the end of radiation. i hope you have an easy surgery and excellent results. specialK, you're cracking me up tonight!0
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yaya - glad I could entertain! We all need a laugh, don't we? How is your family - wasn't there a surgery/flu dilemma?
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specialK, yes, i was exposed to my grandson and his mother, but i am fine. thank you for asking.0
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yaya - oh good, glad you did not get sick! I can't have a flu shot (or pneumovax) because I am allergic to albumin based vaccines ( and apparently there is no pill for that, lol!) so I sometimes worry about exposure. I don't usually catch colds, or stomach bugs, etc. so I just have to take my chances.
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TonLee!!!
Great news!!!!!!!
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Hiya Lori! I hope your lumpectomy goes well!
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