TRIPLE POSITIVE GROUP
Comments
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SpecialK,
Thanks for your insight. I hadn't really thought of it that way. I definitely will not donate now.
G
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facing life, I think you posted on the wrong thread
but keep trying. Good luck. EF is that your last tx?
Debiann, take what ever you need to get through. You can do it.
Much love to all
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I always used to donate blood too, and am sad that I won't be able to again. SpecialK, thank you for your insight into this as someone who used to work in transfusion services.
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I am glad that you understand - I don't want to preach, but I think the disconnect comes in thinking about who exactly gets your blood - because it always feels like such a good thing to donate. Because I saw the diagnoses for those patients, and sent the units of blood for open heart patients, babies in the NICU, and cancer patients getting units of blood so they could get more chemo, I made the personal decision that I would not donate again. The company I worked for will allow certain types of cancer patients to donate after a year NED, but I can't bring myself to do it. I returned to work briefly 30 days PFC, but I was too whipped from chemo and still doing Herceptin, needed PT for LE, and a surgery to put my expander back - I decided to resign because I was concerned about patient safety - specifically that I would make a mistake that would hurt someone. I feel the same way about donating - I wouldn't want to take the risk, the integrity of the blood supply is too important.
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Special K, how are your doing? Are you close to getting the new implant? I haven't been on the TE trouble board lately
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LAST Herceptin treatment today! My Onc said I have a very long life ahead of me and really thinks that I am "good" and will not have to deal with this beast again. He said Herceptin is the magic bullet with Triple Positive women. Feeling grateful as I continue to celebrate the gift of life everyday. To you newbies, I am 1 yr and 3 months out from diagnosis and I promise it DOES get better and the darkness eventually gets lighter again. I'm living proof. 💜 Diagnosed at 32 with two little girls to live for : ages 6 & 4.



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Nicole! Congrats on ringing the bell!
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Congrats Nichole! I hope you have many many years ahead with your hubby and beautiful girls!
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congratulations Nicole! Just finished chemo, now need to finish herceptin and rads. Thanks for inspiring us!
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Congrats Nicole and congrats Efcjax - you have finish one part of your journey!
Getting ready to head out for my xray and bone scan - everyone chant "no uptake" with me.
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Nichole & efcjax
Some good... not good.... GREAT news!
congratulations!!
Linda505
" no uptake"
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no uptake no uptake no uptake!
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Yay Nicole!!! You're done!
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Linda- prayers for NO UPTAKE. -
Dx and efc - yay!
linda - I hope your scan is a non-event! No uptake!
fluff - I go on 8/29 for an apt with the PS, he will set the surgery for a new expander. Hard to believe I have to go through that process again. We will most likely do it slow - 25cc weekly, then exchange again. Maybe by the end of the year? We will see. On a good note DD got a job (yay for the job, but on a bad note - it is with alligators...) so she will be local again and can take care of her dog during the surgery/TE timeframe. The dog is a lovebug, but he is strong and not good on a leash so it is always a challenge right around a surgery for me.
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Congrats Nicole! Thanks for the inspiration.
Linda, no uptake! No uptake! No uptake!
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SpecialK - I now have a visual of your DD as an alligator wrestler.
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Linda, keep the faith. I'm sure you're fine. Have you had your vitamin D checked? Bone can leak lots of alk phos if its constant cycling between breaking down and building up gets out of order. Do you have osteoporosis?
Oh, and another thing I thought of--you might be having a problem with the solvent the herceptin is dissolved in. Since herceptin is a biological drug (meaning made of animal or plant tissue, in this case made with antibodies to the her2 receptor), it has to be injected (not ingested) and it also solubilized in solution. That solubilization is a very tricky part of development of biologics. I would DEFINITELY talk to your MO about that. I have heard that some people are sensitive to the solvent, and the pharmacologist at your chemo center can solubilize the drug in a alternate solution.
Your doctor can run an alk phos isoenzyme test to determine if it is coming from your bone or your liver. It isn't a super common test, but it does help pinpoint what tissue is peeved. Remember, if it is your liver, it does take time to regenerate. And if it keeps going up, it could be a blocked bile duct, which can be fixed. So do your best not to get too freaked...I know, easy for me to say....
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....and that is another reason we love pbrain!!!
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ahhh, shucks...thanks Kathec. ;-) And Debiann, I had a half a xanax on board at every taxol (2.3 mgs).
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linda - your picture is actually about right. There is a big pool with gators right at the front of the park - those will be hers. She is excited about this - I am not.
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Battling shingles but grateful that my doctor diagnosed it early and has put me on an anti-viral. This is my second bout of shingles and when able, will get the vaccine. Had to cancel my port removal surgery for a second time this summer due to this.
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oh honeybair, I am sorry. I was DX'd with them last week. The anti-viral has helped along with Neurontin. Hopefully it will be a mild case for you.
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Thanks all and thanks Pbrain for you vast knowledge that you so kindly share!! I have mild osteopenia according to my bone density and my D is low - it was 25. I really wouldn't be worried about this if my mid back would stop hurting or at least improve. I have never had back pain in that area and it started on May 18th - I was keeping a log of SE's or I wouldn't know the date. At that time they said it was the neulasta shot then when it didn't go away they said it was the chemo but it isn't improving at all - just gets a bit worse. I am hoping that chemo just did a job on my bones or the pain in my back is due to my low hgb - which is still a bit low.
SpecialK - I wouldn't be happy if my DD was working with gators either - not a fav creature of mine. She working at a park in Tampa?
Honeybair - so sorry about getting shingles for the 2nd time and delaying your surgery - I hope you have a very speedy recovery. I had chickenpox when I was a kid also - I guess I should look into get the vaccine? Since we had chemo and have a compromised immune system do the insurance companies allow us to get these before we are 60 and pay for it?
Bren58 - so sorry that you have them too!
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honeybair not you too. I hope yours is resolved quickly. I had to postpone my exchange surgery because of my outbreak.
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What is up with shingle-mania ladies?
linda - yes, she will again be local, so that is nice. Just wish she was not working with things that could eat her.
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i wish she wouldn't, either.
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kathec - lol! I am supposed to reduce my stress, right? I will be a meditating fool - all day, every day! The bad thing about the DD, she likes a challenge! Also, the good thing about DD, so what's a mom to do?
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SpecialK-don't let her take the dog to work!
All you shingle people.....sheesh, makes me want to sterilize my iPad just in case it is coming through!
Linda-I think you should print out pbrains comment and go into your docs office reading it and making him answer all those questions? He will FREAK out, lol! If I spouted all that off in a knowledgeable fashion and got through it without laughing, it would be worth it to see my docs face. I don't care how much research I do, it would never be enough to know to ask for that info.
Pbrain, you are a gift to this board!
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pbrain rocks!
fluff - the dog will be staying at home! However, we have our own resident gator in the pond across the street so I have to be careful that he doesn't get out all the time! Typical Florida!
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